Post Thirty Seven. The Invisible Ones.

My request for the band Suede – please help to make live music accessible for your disabled and/or chronically ill fans who live in permanent lockdown.

I have a request for the music industry. I would like bands to start live streaming at least one performance from each tour, as standard. Not just in times of Covid, but always.

I’m kicking off my campaign (if I can call it that – so far it’s just me screaming into the void) with the band Suede for no other reason than timing. They just happen to be the band taking up the most space in my head at the moment, because they’re who I’d next be seeing live, if I were able to.

I was a teenager in the 90’s and I was obsessed with Britpop, a British music and cultural movement that grew out of a desire to place the spotlight on British indie music over the American grunge scene. Looking back, I actually have some reservations about Britpop, not with the music, which at the time I felt had saved me from my tween self whose musical tastes were, questionable, but with the movement as a whole. I didn’t recognise it back then, but now I see the nationalistic overtones, the whole ‘Cool Britannia’ thing that was so embraced by Tony Blair and New Labour, which gives me the cringe, and the overwhelming whiteness and maleness of the scene, it doesn’t sit quite right with me anymore. So while the movement may have been, in Brett Anderson from Suede’s own words, “…a laddish, distasteful, misogynistic, nationalistic cartoon“, and I think we can agree it’s best left in the past, I am still very fond of a lot of the music from the time.

Despite my fondness for the music though, I rarely listen to it anymore, not unless I’m feeling particularly sentimental. The one exception is Suede. Suede I listen to not for the sake of nostalgia, but simply because they’re great. Their last three albums, since they reformed after splitting up, have been sensational, with their last album being, in my opinion, an absolute masterpiece. Unlike many bands who seem to get a bit lost the further away they get from their heyday, Suede, since their comeback, have been consistently strong, it could be said that they just get better with age.

My current top five albums in no particular order:

The Blue Hour, by Suede

Enter 4, by Hjaltalín

Team Dreams, by Sóley, Sin Fang & Örvar Smárason (their 2017 collaboration)

Island Intervals, by Death Vessel

Hvarf/Heim, by Sigur Rós (a compilation album)

Click on the album titles to listen to these on Spotify.

As a young teenager I’d heard of Suede, but it wasn’t until the release of their third album, Coming Up, that I really got into them, which happens to have been twenty five years ago this month, and I was sixteen years old. My friends and I had managed to obtain almost complete control over the jukebox in our high school canteen, and I still can’t listen to the song ‘Trash’ from Coming Up without flashbacks to our usual lunch table, next to the jukebox, obvs!

Despite Suede featuring heavily in the soundtrack of my teenage years, for some reason I never saw them live, and I have no idea why. I had pretty relaxed parents who were happy to let me go into Edinburgh or Glasgow, even on a school night, to go to gigs, usually at the Liquid Room or the Glasgow Barrowlands. My friends and I always got there early to be at the front of the queue to ensure we got a place right at the front by the barrier. I’ve held many a sweaty hand of various Britpop singers, and I almost always managed to get hold of one of the setlists that had been taped to the stage floor. I have so many wonderful memories of the gigs I went to in the 90’s, but none of Suede, and that’s something I really regret.

With that in mind, it perhaps wasn’t surprising that when Suede announced a tour to mark the 25th anniversary of the release of Coming Up, I excitedly booked a ticket. I’d finally get to see them live, and I’d get to relive the 90’s with the promise that they’d be performing Coming Up in full. There’s a bit of problem though… I have severe ME and I’m predominantly housebound.

So why did I do it? Because I’m addicted to my old life, the life I had before ME. The desire to do the things that make me happy never went away. All I could focus on was the idea of getting to see Suede perform the album that I first discovered them with, and my natural instincts kicked in.

I’m not completely detached from reality, I was fully aware that I may never get to use the ticket. When a situation like this arises though, I can’t help but make myself believe that a spontaneous and miraculous recovery isn’t completely out of the question, and I certainly can’t go if I don’t have a ticket. That’s how I manage to justify it.

But after the anticipation, buzz and excitement of securing a ticket, comes the depression and anxiety as I scold myself for being stupid enough to put myself through this again. Because I’ve done this before. It turns out that I have a pattern when it comes to this particular situation…

  • I see an announcement about a concert that I’d like to attend and…
  • I check when the tickets go on sale.
  • I check the dates of the concert to ensure I don’t have a hospital appointment that week.
  • I go to the venue website to check out access and look for the seating plan to find out where the wheelchair spaces are.
  • I look to see if I’ll be able to book a wheelchair space online but somewhat ironically accessible tickets are never available online (ahem, accessibly), so I email the venue to ask how I go about booking an accessible ticket and hope they reply before the tickets go on sale and sell out. *I can’t call them because speaking on the phone triggers my migraines and I already average eighteen migraine days per month.
  • I find out where the closest accessible parking to the venue is and check that I can use my Blue Badge there.
  • I find someone who can drive me and accompany me using the free companion ticket that tends to come with an accessible ticket.
  • I check the refund policy, because it’s not like I can sell a wheelchair space on Gumtree and there are always so few wheelchair spaces that I want to give someone else the chance to buy it if I can’t go.
  • If, by the time I have all the information I need (which can take a few days because this stuff is never made freely available on their website and emailing back and forth takes time) and the tickets haven’t already sold out (which has happened), I book my ticket(s).
  • I spend a long time hoping I can actually make it this time. Every time I don’t crash as badly as I think I will, or I don’t have a migraine when I usually would, I start to wonder if my ME is improving.
  • But inevitably I conclude that I won’t be able to go, so I contact the box office and either get a refund or lose the money.
  • My mental health will then suffer as my heart aches for everything I’m missing and I’ll feel increasingly resentful of all the people who have the privilege of being able to do the things they want to do.
  • I’ll tell myself to never do this again.
  • I’ll do it again, because life is just too tempting.

This pattern that I follow is driven by my longing to live my life as I did before ME, and even after seven years, letting go of that is not as easy as you might think. Saying that, if you found it difficult not being able to do the things you usually enjoy during lockdown, then you may well have an inkling of understanding. The longer it goes on doesn’t make it any easier by the way, well it hasn’t for me.

So this is exactly what I did when Suede announced their Coming Up anniversary tour. It was originally meant to be in October 2020 but Covid forced them to reschedule, which they did for April 2021, and then Covid forced another change of date, to November 2021, performing at The Usher Hall in Edinburgh on 3rd November.

I might have been the only person who was delighted by the repeated postponement of the tour, because the further away it was, the longer I would have for my miraculous recovery. Now it’s less than two months away, and I won’t be going. That’s pretty much a complete certainty.

The day of the concert will be difficult for me. I’ll have to avoid social media so I don’t see photos or mentions of the concert – deliberately isolating myself even further than I already am in order to shield myself. Then afterwards I’ll be too sad to listen to Suede for a while because it will remind me of missing the concert, and everything else that I’m missing because of this illness.

Online events don’t have to be just for lockdown.

However, there is something that Suede could do to save me, and others like me, from this cycle of emotional trauma. With every tour they go on, they could live stream one of their performances, for a fee, if they wish, I’d pay for a virtual ticket, to allow their housebound fans to participate in the live music experience.

If I knew from the beginning that attending the concert virtually was an option, it would save me from repeating my ridiculous pattern, the crushing disappointment that it always brings and the subsequent crash that my ME will suffer.

My hope is that the live stream would also be made available to tickets holders for a time after the initial event as well. This would allow those of us with energy impairments and/or fluctuating conditions time to watch it after the live stream, or in short chunks over a few days, if that’s what we need.

Importantly, I would also hope that when the band address the audience, they include those of us at home. This would give us a sense of belonging, allow us to feel included, part of the experience, and as valued as the audience that they see standing right in front of them.

Of course it won’t be the same as attending a concert in person, there’s no substitute for the energy or the atmosphere, but it’s the best doable solution that I can think of. It will go a little way at least in closing the gap between live music fans who are housebound due to disability and/or chronic illness, and the bands that they love.

What I’m proposing isn’t particularly radical, but it’s something that we all know can be done, lockdown taught us so. So now it’s just a matter of, do Suede and the music industry at large want to make their live shows accessible to housebound fans? Yes or no?

I’ve tried to make contact with Suede’s people in the hope they would offer to trial my idea on the upcoming tour, but they’re proving to be impossible to reach, or at least impossible to elicit a reply from. I tried Twitter and Facebook, and heard nothing. I emailed the manager of Suede’s fan club, The Insatiable Ones, and asked if they could help. They liked my idea and forwarded my email to the band’s management, but they didn’t respond.

I genuinely thought that my proposal might be something that Suede would consider. Last year, to compensate for the postponement of the tour, they regularly shared old live performances on YouTube. So they do seem to recognise the value of making their music accessible, but sadly it seems that this was only for the time when it primarily benefited fans who were temporarily stuck at home. When it would primarily benefit disabled fans who are permanently housebound, it seems it’s less of a priority.

“…people seem unable to acknowledge that everything they’ve found hardest about the last year is just a way of life for many of us. And now they’re “back to normal” and it feels like we’re forgotten and left behind all over again. It’s hard.

@lornamcfindy, Twitter

At the start of lockdown it was heartwarming to see how communities rallied to support their vulnerable neighbours, and how society opened up and offered online opportunities that disabled people have dreamt of for years. I’d hoped that this new more accessible society would stick around, but now that non-disabled people have decided it’s time for life to go back to ‘normal’, there’s been a noticeable shift in attitudes towards vulnerable/disabled people. This is something that I’m finding incredibly difficult to witness, traumatic even, to see the world opening back up for most people, while closing down again for disabled people. Knowing that access to such events was always possible, but that it was only done (mainly) for the benefit of non-disabled people, for the short time they needed it, really stings.

My guess as to why this is happening is that disabled people just aren’t high on non-disabled people’s radars, if at all. Unless someone is disabled themselves, or they care for a disabled family member, or they work for a disability organisation/charity, generally speaking, people don’t tend to consider disabled people.

The last concert I went to was in Reykjavík, Iceland, in December 2017. As I was planning the trip I asked in an Iceland travel based Facebook group if anyone could tell me the rough cost of a taxi from the bus terminal to the street where my Airbnb was. I made it clear that I’d been to Reykjavík many times before and I knew it was a short distance. These are the replies I got…

If the weather is good and you don’t have a lot of luggage walking is easy.

I would walk both trips with ‘the long way around’…Plenty to see and feel if eyes and heart are open.

You can walk there. It’s about ten minutes.

No one considered the fact that I was asking this question for a reason. No one considered that I would need to take a taxi (for what I acknowledged to be a short distance because I’d been there before) because I am disabled. They all assumed that walking was an option, even when I’d given them a pretty big hint that it wasn’t. For the full story of this little holiday read Post Twenty Three. Wheelchair’s First Holiday.

Perhaps this ableist attitude stems from the fact that disability tends to be a foreign and scary concept for most people. They hate to think that it’s something that will ever touch them, so it’s easier to pretend it’s not there at all, but disability can happen to anyone. It’s the one minority group that anyone can join, it could happen to you tomorrow. It doesn’t matter how healthy you are, how much yoga you do, how many wellness blogs you subscribe to, how many vitamins you take, or how ‘clean’ your diet is… whether through an accident or injury, genetics or bad luck, you could become disabled one day.

Disability is not as far away from most people as they think it is, so it’s best not to pretend it’s not there. Instead, acknowledge it, welcome it, and be active in creating a more accessible world. Then if you yourself one day become disabled, you’ll have far more equal opportunities to participate in society than those who came before you.

The Social Model of Disability

The model says that people are disabled by barriers in society, not by their impairment or difference. Barriers can be physical, like buildings not having accessible toilets. Or they can be caused by people’s attitudes to difference, like assuming disabled people can’t do certain things.

The social model helps us recognise barriers that make life harder for disabled people. Removing these barriers creates equality and offers disabled people more independence, choice and control.

SCOPE

Sadly it’s a common attitude of non-disabled people though, that disabled people have no interest in the world around them. That we aren’t well-rounded autonomous human beings with hobbies, interests and passions, just the same as non-disabled people. So they have little in the way of motivation to make the changes that would allow disabled people to fully participate in society.

The only reason I can think of why live-streaming events isn’t the norm, outside of a pandemic, is because the people who make events have simply never considered that there’s an audience. Either they genuinely don’t know that housebound people exist, or they they fall into the camp of “why would disabled people want this?”. They’ve been so well conditioned by a society that dehumanises disabled people, that they don’t realise that disabled people crave joy and variety from life as much as they do.

And perhaps that’s part of the problem. Cultural prejudice around disability means it is still too often assumed that disabled people do not actually “have a life, just like anyone else”: that they don’t have careers, relationships, interests or children.”

Frances Ryan, The Guardian

We’re lucky to live in a world in which the knowledge and technology exists to allow online access to events, so why aren’t we fully embracing it? Thanks to lockdown we all understand the value that it brings, so why wouldn’t we want to open up the world and bring joy to those who are forced to live in permanent lockdown?

I don’t know how to reach them.

While I had little luck with Suede’s management, I’m wondering if I’d have better luck with the band members themselves.

I could really do with this blog post somehow falling into the laps of Brett Anderson, Neil Codling, Simon Gilbert, Richard Oakes and/or Mat Osman. I don’t have a clue how to make contact with them though, not with the impenetrable wall that is their management standing between me and them.

So please PLEASE share the crap out of this post!!!

On the remote chance that I can make contact with Suede and they agree to trial my idea, I’m hoping I can use that as a launch pad to start a proper campaign, and have other bands/artists/musicians follow suit.

It would make me deliriously happy if this could happen in time for the Coming Up tour, but I expect it’s too late now. I believe they have a new album in the works though, so maybe then…

I’m quite sure that Suede have the power to make this happen. I can only hope that they value their invisible fans enough to be the band who lead the way in improving access to live music.

Wouldn’t that be a tremendous thing!

~

UPDATE – Friday 17th September

After publishing this post (on Tuesday 14th September) I contacted Suede’s manager directly (I managed to correctly guess his email address!) to explain my situation and I included a link to my blog. Yesterday I received a lovely reply.

It was a really encouraging email.

He likes the idea a lot and he understands how inclusive and significant it would be for the band’s disabled/housebound fans to be able to access Suede’s live shows via a live stream.

As I suspected it’s too soon to be able to make it happen for the Coming Up tour in November, but he and the band’s tour manager are discussing how they might be able to make it work for future tours. Though they can’t make any guarantees.

Overall I felt it was a really positive response.

He also commented on how well I explained my situation regarding gig-going, how well written it was, and that I got my message across incredibly well, which was very kind of him.

I’ll share any further updates if/when they happen.

~

For my personal ‘best of Suede’, click here to take you to a Spotify playlist I made recently for a friend. It’s in chronological order and includes 1-3 songs from all but one of their albums, and 2 b-sides. All of my favourites!

~

NEWS

ME Science & Research

The Guardian. UK to launch world’s largest genetic study into chronic fatigue syndrome

DeCode ME: The ME/CFS Study

Health Rising. The Cortene Drug Trial Results for ME/CFS Are In.

ME/CFS Skeptic. InTime: the results of Cortene’s CT38 trial.

Doctors With ME. Founding father of Human Genome Project joins Doctors with M.E. with leading evidence based policy expert as Honorary Fellows

ME In The News

The Guardian. We’re about to see a wave of long Covid. When will ministers take it seriously?

The Guardian. Apparently just by talking about it, I’m super-spreading long Covid

The Atlantic. Long-haulers are fighting for their future

The Times. Link between long Covid and ME could transform the lives of sufferers

General Disability & Chronic Illness

Forbes. We Need To Rethink The Penalties And Rewards Of Identifying As “Disabled”

Huff Post. Wellness Culture Is Ableism In Sheep’s Clothing

Metro. When spaces are made accessible for disabled people, everyone benefits

The Guardian. Disabled and clinically vulnerable shut out from return of live music and theatre

Post Thirty Six. NICE Delay Publication Of New Guidelines.

Wednesday 18th August 2021 was meant to be a good day. It was meant to see the publication of the long awaited review of the NICE guidelines on the treatment of ME. It was supposed to be a new beginning. The beginning of a future in which people with ME would be taken seriously.

NICE are the National Institute for Health and Care Excellence, the English public body who provide guidance on the appropriate treatment and care of people with specific diseases and conditions. An English organisation, but they also have influence over the Scottish Good Practice Statement, the Scottish version of the NICE guidelines.

We are going to tear it up and start again. We won’t allow it to look the same.”

Professor Mark Baker, Director of the Centre for Guidelines speaking at a NICE stakeholder meeting for CG53: 16th January 2018.

When NICE announced that they were going to review the ME guidelines, I was sceptical, but as I learned more about the review process, and heard what the Director of the Centre for Guidelines had to say, I began to trust them. I trusted that they were going to do right by people with ME.

The old guidelines would unfortunately remain in place until the review was complete, but there was hope that the current recommended Cognitive Behavioural Therapy and Graded Exercise Therapy (CBT/GET) would eventually be scrapped.

These therapies are based on the now discredited theory that ME is not a physiological illness, but a psychiatric condition in which patients have ‘false illness beliefs’. We ‘believe’ we are unwell, we ‘believe’ that we have an intolerance to exertion, and as such we fear exercise and become deconditioned.

The idea behind the therapies is that CBT can cure us of our false illness beliefs, then we undertake a programme of GET to gradually increase our activity, and recover.

This was supposedly proven in the now discredited PACE Trial.

The PACE Trial is the basis on which the NHS ‘treat’ ME. It also impacts heavily on clinical policy abroad, both in terms of government funded healthcare and the private medical insurance industry. Due to the influence of the trial’s authors, funding of ME research in the UK has primarily been poured into psychiatry, rather than much needed biomedical research. Misconceptions about ME already existed, but the PACE Trial cemented these into the minds of the government, the medical establishment, the media and the general public.

The results of the trial were published in 2011. PACE found that patients being treated with CBT/GET over a six-month period improved by 60% while the recovery rate was 20%. However, thanks to a Freedom of Information request by a group of ME patients (which involved a drawn out five year legal battle with the PACE Trial authors spending £200,000 in an attempt to stop the data from being released) it came to light that the researchers changed midway through the trial what constituted as improved and recovered. Participants could end the trial being more unwell than when they started, yet they were still categorised as recovered. The authors basically manipulated the data to reach the conclusion that they wanted. When the authors were forced to release the raw data, new analysis found that patients actually only experienced a 20% improvement, and only 5% could be considered as recovered. Would a pharmaceutical intervention with such low odds be approved for use?

Uniquely for a clinical trial, and very strangely, the PACE Trial was partially funded by the Department for Work and Pensions (DWP), the UK government department for sickness, disability and pension benefits. Is it a coincidence that the PACE Trial is often used to deny ME patients disability benefits?

It’s also worth noting that the trial used the Oxford criteria for the diagnosis of the participants, which is widely considered to be overly broad and it doesn’t include the cardinal symptom of ME, Post Exertional Malaise (PEM), an intolerance to exercise/exertion. Rather, it lists fatigue as the main symptom. Furthermore, research has shown that for every fifteen patients selected under the Oxford Criteria, fourteen will be false positives when compared to the more up-to-date and robust Canadian Consensus Criteria. So we don’t even know how many of the trial participants had ME to begin with.

Thankfully, the truth came out, and while the trial hasn’t yet been officially retracted, it is widely discredited. It’s even being taught at the University of California, Berkeley, as an example of how not to conduct a clinical trial. Very embarrassing for the trial’s authors!

I think that when the full details of the trial become known, it will be considered one of the biggest medical scandals of the 21st century.

Carol Monaghan MP speaking at the PACE Trial: People with ME, House of Commons Debate, 20th February 2018

As if the bad science wasn’t enough, it gets worse. It turns out that the PACE Trial authors failed to disclose a conflict of interest. The main investigators of the trial had financial and consulting relationships with disability insurance companies, advising them that rehabilitative therapies like CBT and GET could help ME claimants get off benefits and back to work. They gave the medical insurance industry a reason to withhold payouts – a condition of the payout would be that the ME patient undergoes a GET programme, which many refuse to do as they know it would make them worse. So, it’s not surprising why the trial authors have such a vested interest in keeping these therapies in the NICE guidelines.

The proponents of CBT/GET have nothing but contempt for ME patients. They believe us to be ‘malingerers’, that we perpetuate our false illness beliefs for ‘secondary gains’. Meaning, they think that we benefit from having a disability in terms of what we can gain from it: social security/benefits, equipment, accommodation, support, care and attention from family and friends, a good excuse to avoid things we don’t want to do, and my favourite, apparently we enjoy the ‘social mystique’!

Image of a slide from a presentation “Medically Unexplained Symptoms” – an approach to rehabilitation by Prof Lynne Turner-Stokes at Northwick Park Hospital. ME is listed as an example of one of these illnesses.

Now that I think about it, of course these gains make up for the loss of my career, having to sell my beautiful flat in Edinbugh, having to withdraw from my dream-come-true of spending four months living and working in Antarctica, the loss of friendships, the loss of income, my loss of self-worth and sense of purpose, the pain, the chronic migraines, the comorbidities, the loss of my fertility, the loss of my strength, fitness and stamina, not being able to participate in my hobbies, the food intolerances, the isolation, the loneliness, the anxiety, the fear, the depression, the suicidal ideation, the loss of my freedom and independence, the stigma, the ‘yuppie flu’ jokes, the intolerance, the ableism, the discrimination and the inaccessibility. Yep, I’m good with these, because never mind Antarctica, all I’ve ever wanted is to have my sole income be at the mercy of the grotesquely inhumane DWP, and don’t forget my ‘social mystique’.

One of the cardinal symptoms of ME, in fact, THE cardinal symptom of ME is exertion/exercise intolerance. This is backed up by science – people with ME have a pathological inability to produce energy on demand at a cellular level. Research has found immune cells taken from the blood of people with ME show clear signs of low energy production. Simply put, if exercise makes you feel better, then that in itself rules out an ME diagnosis.

CBT and other talking therapies can be helpful to support ME patients as they learn to cope with having a chronic illness, but in the context of the NICE guidelines, that is not the manner in which CBT is currently recommended. It also seems that GET may be an effective treatment for some conditions, but not only is it ineffective for people with ME, it’s dangerous.

For ME patients, GET is “extremely barbaric” and “government sponsored malpractice”.

Ron Davis, Professor of Biochemistry & Genetics and Director of the Stanford Genome Technology Center at Stanford University, and the Open Medicine Foundation’s Scientific Advisory Board Director, speaking at an Emerge Australia research symposium.

Ron Davis speaking at an Emerge Australia research symposium. Full video can be found here.

There is a long history of GET harming people. So many stories around the world from adults and children whose ME worsened after GET. People who could walk pre-GET but required a wheelchair afterwards. People who previously had a life outside of their homes but became bedbound. People who knew GET was harming them but were forced through it in order to access benefits or medical insurance payouts. GET has forced young adults with no alternative support system into care homes for the elderly. GET has stripped people of what little quality of life they had. GET has caused Post-Traumatic Stress Disorder (PTSD). GET has caused permanent and severe disability. GET has resulted in loss of life. There’s no official record of this though. Unlike with pharmaceutical interventions, in which (in the UK) we can report side-effects through the Yellow Card Scheme, there is no official channel to report the harm caused by these therapies. So all the evidence is anecdotal, and for some, that’s not proof enough.

After decades of GET being forced upon ME patients, after all the harm that has been caused, we finally began to believe that things were going to change. In November 2020 NICE released the draft of the new guidelines, and the ME community were collectively delighted to find that GET was to be scrapped, and that CBT should only be used to help patients cope with having ME. This was monumentous news. ME patients in the UK were no longer going to be harmed by this dangerous practice, and it would hopefully also influence ME guidelines worldwide.

“Do not offer people with ME/CFS: any programme based on fixed incremental increases in physical activity or exercise, for example Graded Exercise Therapy.”

Excerpt from NICE Draft Guideline

“Only offer cognitive behavioural therapy (CBT) to people with ME/CFS who would like to use it to support them in managing their symptoms of ME/CFS and to reduce the psychological distress associated with having a chronic illness. Do not offer CBT as a treatment or cure for ME/CFS.”

Excerpt from NICE Draft Guideline

“Recognise that people with ME/CFS may have experienced prejudice and disbelief and feel stigmatised by people who do not understand their illness.”

Excerpt from NICE Draft Guideline

Click here for the full draft guidelines.

I think we were all fairly confident that this would make it into the final guidelines, and the date for publication was set for Wednesday 18th August 2021.

Then on Tuesday 17th August 2021, NICE released a statement…

NICE pauses publication of updated guideline on diagnosis and management of ME/CFS

NICE has today (17 August 2021) taken the decision to pause publication of its updated guideline on the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS).

The guideline recognises that ME/CFS is a complex, multi-system, chronic medical condition where there is no ‘one size fits all’ approach to managing symptoms. The causes of ME/CFS are still poorly understood and because of this there are strong views around the management of this debilitating condition.

Because of issues raised during the pre-publication period with the final guideline, we need to take time to consider next steps. We will hold conversations with professional and patient stakeholder groups to do this. We need to do this so that the guideline is supported.

NICE has used its usual rigorous methodology and process in developing this guideline but despite the best efforts of the committee, that followed these to the letter to bring together the available evidence and the real, lived experience and testimony of people with ME/CFS, we have not been able to produce a guideline that is supported by all.

We want to thank everyone who has contributed to this guideline and particularly the committee and the patient groups who have worked so diligently. However, unless the recommendations in the guideline are supported and implemented by professionals and the NHS, people with ME/CFS may not get the care and help they need.

In order to have the desired impact, the recommendations must be supported by those who will implement them and NICE will now explore if this support can be achieved.

NICE 17 August 2021

We all knew that not all medical professionals were on board with the removal of CBT/GET. Not because they have ME patient’s interests at heart, but because there are some very influential people with a vested interest in keeping CBT/GET in the guidelines. Disappointingly it now appears that NICE are bowing down to pressure from within the medical establishment. This isn’t about science, or evidence, or medicine, it’s about politics, and perhaps even nepotism.

I knew there would be significant push back from certain parties. Before NICE released their statement on Tuesday I posted on Twitter…

How long until Wessely, Sharpe & co publicly push back against the new NICE guidelines? They’ll be desperately trying to save their professional reputations in the wake of NICE formally denouncing their life’s work on #MEcfs.

@PhoebsBo, Twitter, 17/08/21 2.06pm

I didn’t expect it to happen QUITE so quickly, I Tweeted this less than three hours later…

Well, right away it seems. I can’t think of any other reason why @NICEComms are now delaying the publication of the new guidelines, other than the interference of Wessely, Sharpe & co. NICE are not above corruption, it seems.

@PhoebsBo, Twitter, 17/08/21 4.44pm

Interestingly The Times reported on Tuesday about a planned backlash from within the medical establishment…

Disputed therapies for myalgic encephalomyelitis abandoned

The Times understands that leading medical bodies are considering refusing to endorse the guidance.”

Sean O’Neill, The Times Tuesday 17th August 2021
The Times, Sean O’Neill, Tuesday 17th August 2021 (because the above link is behind a paywall)

In my Tweets I mention Simon Wessely and Michael Sharpe, both of whom are amongst those with the vested interests.

Simon Wessely is a British Professor of Psychiatry at King’s College London. He helped develop the cognitive behavioural model of ME/CFS, a rehabilitation-based model in which unhelpful thoughts and avoidance behavior are believed to perpetuate the symptoms of ME/CFS, and he helped design the PACE Trial. Wessely believes ME/CFS to be a ‘general disorder of perception’.

Michael Sharpe is a British Professor of Psychological Medicine at St Cross College, Oxford University. Sharpe was author of the Oxford ME/CFS diagnostic criteria, he helped develop the cognitive behavioral model for ME/CFS and ‘medically unexplained symptoms’, and was one of the principal investigators of the PACE Trial, along with Peter White and Trudie Chalder.

Wessely, Sharpe, White and Chalder are some of the UK’s biggest CBT/GET proponents. They are responsible for CBT/GET being in the NICE guidelines to begin with, so of course they don’t want them to be scrapped. As well as screwing up their relationship (and cash flow) with the medical insurance industry, it would essentially mean that NICE were formally denouncing their life’s work on ME. It would leave their professional reputations in tatters.

Photograph of Simon Wessely, Michael Sharpe, Peter White and others attending a meeting on ‘Malingering and Illness Deception’ in 2001. This meeting was funded by the Department for Work and Pensions (DWP), the UK government department for sickness, disability and pension benefits, who also funded the PACE Trial.

It is believed, though I don’t know if confirmed, that that the medical establishments at the heart of the above mentioned backlash are the Royal College of Physicians, the Royal College of Paediatrics and Child Health, and the Royal College of General Practitioners. Now, what is it about the RCGP, oh yes, their President is Dr Clare Gerada, wife of Simon Wessely.

It’s also interesting to note that just two weeks (or so) before the publication date three members of the NICE guideline review panel suddenly quit. They were known proponents of CBT/GET (the panel included professionals both for and against for the sake of balance), and seemingly they quit because they didn’t support the new guidelines. Of the three who quit, two of them work as clinical leads for ‘fatigue services’ in the UK and the third is a senior physiotherapist at another similar service. All of these services of course offer CBT/GET as treatments, and I’m guessing that if they are scrapped, these three will be out of a job. Is that not a huge conflict of interest?

It is my belief that it really doesn’t matter if not all doctors are behind the new guidelines. Presumably not all doctors were behind the last lot of guidelines, but NICE went ahead and published them. NICE are there to provide guidance to the NHS, they don’t take their orders from individual doctors or medical associations. They should not allow themselves to be dictated to by a handful of rotten doctors who don’t care a jot about ME patient welfare. So I say, publish the new guidelines anyway and THEN deal with those who refuse to implement them, perhaps by removing their privilege to practice medicine?

Some argue that by removing CBT/GET from the guidelines we’ll be left with nothing, no recommended treatments. GOOD! No treatment is better than a harmful treatment. How anyone is unable to grasp this is beyond me. Even without a treatment there is still plenty that NICE can do to guide the NHS. They can guide GPs on how they can best support their ME patients, how to manage symptoms, to advise their patients to rest and pace, how to support patients who are severe/very severe, when to offer home visits, how to handle hospital admissions, how to support disability benefit, Blue Badge and social care applications, etc. Removing CBT/GET doesn’t mean we’ll be left with a blank page where the guidelines used to be. Even if it did, that would be infinitely better than guidance that knowingly harms patients. The removal of CBT/GET will also pave the way for future funding of biomedical research, because the government will no longer be able to deny funding for research with the excuse that ME already has ‘treatments’.

I have so many questions rolling around my bewildered head…

  • Have NICE ever bowed down to pressure from medical professionals upon the pending release of guidelines for any other condition?
  • Why aren’t they standing behind their own procedures?
  • Do they not have confidence in their own investigative process?
  • Why spend over three years studying the evidence, come to a solid conclusion, only to back down the day before?
  • NICE previously reported that the evidence used to back up CBT/GET to be of “low” or “very low quality”, so why change their minds now?
  • What new evidence came to light in the hours before publication?
  • Are they saying that the last three years of work were a waste of time?
  • Are they worried that Wessely, Sharpe & co are going to take legal action, and they’re buying time to plan their defence?
  • Instead of coddling a group of tantruming ME sceptics, shouldn’t they focus on doing what is right by the ME community – a community who they acknowledge has historically experienced prejudice, disbelief and stigma by people who do not understand ME?
  • Why are they so overly concerned about pleasing all of the medical professionals at the expense of patients?
  • Why are ME patients not their priority?
  • Since when did the practitioner of the therapy trump the needs of the patient?
  • Why are the people who are responsible for harming us still being allowed to influence our healthcare?
  • Are NICE exceedingly weak, or are they corrupt?

The ME community need answers. NICE owe us transparency. So many ME patients gave their time and energy to inform the new guidelines, filling out questionnaires, sending evidence of harm caused by GET and encouraging others to do the same. In fact NICE received 4000 responses to their consultation, which they said was “significantly higher” than usual. As such they had to delay publication of the final guidance by several months to give themselves time to consider them. I think many of us appreciated that they were taking the process so seriously and we’ve waited patiently. But now, after all we’ve given, all we’ve been through, the trauma of having such a maligned illness, the gaslighting we’ve endured, we deserve the truth. They can’t leave us here, abandoned, dangling in limbo, having no idea what our future holds.

So many of us were ‘living’ for this moment. I have told myself previously, on occasions when I’ve felt suicidal, that I must wait until the NICE guidelines review. I mustn’t do anything permanent, not yet, not when there’s hope that attitudes towards ME may change. I had to hang on, at least until the publication of the new guidelines. I don’t feel the same now, but there are many who do. What do they do now? Keep waiting, indefinitely? ME patients have been waiting for change for decades, it has never happened, so why should we believe it ever will?

The ME community are currently devastated beyond belief. It’s been a long time since I’ve felt quite so dejected and let down, and by an organisation who told us they were going to help us. NICE gave us hope of a lifeline, then snatched it away in the final moments. Unfortunately this situation perfectly represents the way in which ME patients are used to being treated, with disdain, neglect, and a complete lack of care or respect.

NICE should be utterly ashamed of themselves.

#MEACTION PETITION

Please sign this #MEAction petition calling upon NICE to publish the finalised ME guideline in its current form.

SOME NOTABLE REACTIONS TO THE NICE STATEMENT

“For many years, campaigners for psycho-behavioral interventions for ME/CFS have accused patients who objected to the research as being anti-scientific zealots. It was always a ridiculous charge, but developments this week have made it clear, if there was any doubt, that these entitled bullies are the ones immune to the actual evidence…”

David Tuller, Virology Blog. Trial By Error: NICE Squares Off Against Royal College Bullies Over New ME/CFS Guidelines.

I feel frustrated and angry. The action of a small number of people who have persuaded the leadership at the Royal College of Physicians, the Royal College of Paediatrics and Child Health, and possibly other Royal Colleges, to put pressure on NICE to reconsider what had already been agreed by the guideline committee, is reprehensible…

Dr Charles Shepherd, ME Association, Medical Advisor. The NICE Guideline ME/CFS: Personal Observations

@NICEComms has to decide whether it’s a science-based organisation, or whether it’s beholden to a lobby group that refuses to let go of dangerous and long-discredited quack “treatments” for ME/CFS. Its credibility hangs on the outcome.

George Monbiot, Journalist, Twitter

Decision of NICE to delay publication of new guidelines for management of ME is a massive blow to patients & charities who have campaigned for better treatment. Have the three years NICE has spent on this been wasted? ME community deserves so much better!

Carol Monaghan, MP, Twitter

Dear NICE, What new evidence was presented 24h before publication of the new ME/CFS Guidelines? Your draft guidelines said that quality of all 236 separate CBT/GET outcomes was “Low” or “Very Low”. To progress science & clinical care we need to see the evidence.

Professor Chris Ponting, Section Head at Biomedical Genomics, Chair of Medical Bioinformatics, and Principal Investigator at the MRC Human Genetics Unit, Institute of Genetics and Molecular Medicine at the University of Edinburgh. Deputy Chair of the UK CFS/ME Research Collaborative and Principal Investigator for the DeCode ME/CFS Study, Twitter

“Unbelievable. A tiny cadre of powerful psychiatrists with their legacies on the line are stepping in to try to overturn scientific consensus and the advocacy of tens of thousands of ME patients. UK healthcare is just as broken as US healthcare, just in a different way.”

Jennifer Brea, Co-founder of #MEAction, Director of ME Film Documentary Unrest, Twitter

NICE has delayed publication of new treatment guidelines for ME after @thetimes revealed a planned backlash from the medical establishment. The only losers here are people with ME.”

Sean O’Neill, Journalist, Twitter

ME CHARITY STATEMENTS

The ME Association

Action For ME

#MEAction

Invest In ME Research

ME Research UK

Doctors With ME

IN THE NEWS

Please note, in an effort keep my stress levels down I haven’t read any of these articles, so I can’t vouch for the accuracy.

BBC Outrage at chronic fatigue syndrome advice update pause

The Guardian UK health standards body delays new ME guidance in therapy row

Huff Post ‘We Are In The Dark’: Despair For ME Patients As Doctors Can’t Agree On Treatment

The Canary A national health body seems set to throw millions of people under the bus

Daily Mail Health watchdog PAUSES publication of NHS guidelines for treating chronic fatigue syndrome amid dispute over right way to treat the condition

The Independent Health watchdog accused of ‘capitulating to vested interests’ over chronic fatigue as it delays new advice

The Telegraph Health watchdog pauses plans to scrap therapy and exercise as treatments for ME

The National Carol Monaghan hits out over delay to guidance for ME diagnosis and management

Post Twenty Six. How Having ME Has Affected My Mental Health.

I would like to warn you that this post may be triggering to those who have experienced suicidal thoughts.

I feel like this post is a bit all over the place. I’m currently struggling to put my thoughts in order, and I keep going back for further edits. I have so much to say, and so much I’m scared to say, but I feel that it’s important to be honest about how having ME really affects me. I often feel I’m a failure for succumbing to depression since having ME, but the more I share, the more I hear from others who are in the same situation, and that makes me feel like I’m maybe not quite so crazy after all.

I’ve become used to sharing details about my life with ME, and I want to become used to sharing details about my depression and anxiety too. They all have stigmas attached, they needn’t and they shouldn’t, but they do, and the only way I can see to remove the stigmas attached to these illnesses is to normalise them, and that means talking about them, and how they affect me. I love what Geroge Monbiot said in a recent-ish article in The Guardian about his prostate cancer diagnosis…

“There are, I believe, three steps to overcoming fear: name it, normalise it, socialise it. For too long, cancer has been locked in the drawer labelled Things We Don’t Talk About. When we call it the Big C, it becomes, as the term suggests, not smaller, but larger in our minds. He Who Must Not Be Named is diminished by being identified, and diminished further when he becomes a topic of daily conversation.”

I love that, “name it, normalise it, socialise it.”. I think that can be applied to ME, depression and anxiety, and any stigmatised illness. The attached stigma, the misunderstanding, the shame, the mystery, will diminish when it becomes a topic of daily conversation. So I plan to do that, here and in person, no matter how uncomfortable people are to hear it.

It’s not at all uncommon for people with ME to develop depression and/or anxiety. I always feel quite amazed when I hear from someone with ME who hasn’t had it impact heavily on their mental health. I would be one of those people if I could. But just as I can’t ‘just stop’ having ME, I also can’t ‘just stop’ having depression or anxiety. This seems to be a difficult concept for some people. They can say they understand, but then their lack of understanding can jump out at me during conversation. When talking to people about how my depression or anxiety is affecting me, I’ve been told “you just need to not let it upset you” or “you just need to stop worrying about that”. But would the same people say, about my ME symptoms, “you just need to not let that migraine hurt your head”? I don’t think so. ME gives me symptoms. Depression and anxiety also give me symptoms. That’s how it is.

Right now, one of my main obstacles (symptoms) is, what I call, the nervous dread. It’s the feeling of fear that I often get, and is the exact same feeling that I had as a child when I woke up terrified after a nightmare, except now, the nightmare is my life, and the feeling can last for days at a time. What comforted me as a child, when I woke up after a nightmare, was to crawl into my mum and dad’s room, make a little nest on the floor with my quilt and go to sleep there. That helped me because I knew I was safe, that I had someone looking out for me and that I wasn’t alone. This feeling of dread is often how my anxiety and depression manifests, and I (and my counsellor) believe that it basically stems from the same place, the fear of being alone, forgotten or abandoned. I don’t just mean the literal isolation that I live in, or the fear of being abandoned and forgotten by the people in my life, although that affects me deeply too. I’m also talking about the general lack of understanding about ME as a whole –  the lack of funding for biomedical research, the lack of support from our healthcare providers, the lack of recognition by our governments and our media that ME is a serious, disabling and life-threatening illness – this too all makes me feel abandoned and forgotten, invisible.

It’s not just ME, depression and anxiety are vastly misunderstood illnesses too. I used to be one of the people who didn’t fully understand depression, but I’ve never disbelieved anyone. When someone told me how their depression affected them, I can’t say I always understood it, but I believed them, because why on earth would someone lie about that? I’ve had people confide in me about suicidal feelings, before I ever felt such things myself. The first time I had no idea what to say, I just had to wing it, I sensed that my friend needed to talk, so I let them talk. I think, I hope, I handled it sensitively. I always think about what my words mean to others, I never want my words to hurt anyone. Importantly, I didn’t tell them how they should be feeling. I never tell people what they should feel, people tell me what I should be feeling, a lot. When I tell people about my fear of never being well again, for example, I’m told I should be more positive and feel hopeful. Why? Why, for a moment, can I not just feel what I feel? Are people with incurable illnesses, who are unable to live the life that they want, who have had everything stolen from them, never allowed to feel despair, or grief, or sadness, or frustration, or anger? Sometimes it seems, apparently not, and when we do, we must keep it to ourselves.

I have a huge amount of fear about never being well again. I do not want to live the rest of my life as I am now. Most of the time I keep it to myself, but sometimes I want to talk about it, and cry about it, I want to be able to talk about what scares me. But more often than not I’m met with ‘but there will be a breakthrough one day’ or ‘they will find a cure’. Really? You know that for sure? You’re 100% certain about this? The fact is, not all illnesses have cures. Not everyone who gets ill, gets better. People die from illness all the time, sometimes quickly after an aggressive illness, sometimes slowly, after decades of a malingering chronic illness. To reach some sort of acceptance about my life with ME, I need to accept all the possibilities, and one of them is never getting better. To be shut down when I try to talk about this only adds to my isolation, and loneliness, and as a result, my depression worsens.

When people insist that I will get better, it can be really hard to hear, it makes me feel so much pressure, because if I don’t get better, then somehow it must be my fault. I would love it if people, when saying this, would also acknowledge, in the same conversation, that I might not get better. Being hopeful is fine and good, but also be realistic, acknowledge my life, don’t erase me, my suffering or my fears. No one knows if I will recover or not, no one. It’s entirely possible that I will not, and when I talk about that, it’s my attempt to try to normalise it, to accept this, it doesn’t help to then be shot down. Once I’ve accepted it, then I can work on making my life, as it is, as meaningful and fulfilling as possible. I cannot spend my life clinging on to a potentially false certainty that a cure will be found, because if that doesn’t happen, I won’t be able to handle the devastation. I’d much rather learn to live my life, as it is, as well as possible, and one day, hopefully, maybe I’ll be surprised with the news that there is a cure, or a treatment that works, but I cannot pin all my hopes on that, it’s simply too much pressure for me to cope with.

How I feel (mentally) is often, unfortunately, and unhealthily (I think), at the mercy of other people. My illness has caused a lot of the people in my life to drift away. I’ve been left with very few people I feel close to, and I’m constantly worried about losing them too. Because of my anxiety, and due to living in this bubble, with too much time to think, any perceived (by me) slight from one of these people is magnified by a million, I obsess over it, to a scary degree. If I extend an invitation to someone to visit me, for example, and it’s ignored, the reasons why will consume me. My paranoia will take hold and it will eventually lead me to a very dark place. But it is important to state that no one is responsible for me feeling like this, it’s not even me, it’s the illness. I don’t want anyone to feel they have to distance themselves from me, for fear of triggering my mental health problems. My depression and anxiety will find a way, when they want to, and they often do pop up with no obvious trigger whatsoever.

People are also what I need, when I’m at my lowest, in order to survive. I can’t speak for everyone, but, there’s this myth that you can’t speak about suicide to someone who has suicidal feelings. Like, if you mention it, it will suddenly give them ‘ideas’, but the thing is, those ideas are already there. The word ‘suicide’ itself, does not make me suicidal. I only feel that way when my depression is at its worst, at the moment, it’s happening roughly twice a month (I think severe PMS may play a part). The rest of the time, I can feel low, without feeling actively suicidal, but I do spend a lot of time thinking about my own death, and hoping for a natural death, my escape from ME. When I am thinking about doing it myself, and wishing I had ‘the guts’ to do it, it becomes overwhelming, and what helps me get through it, is talking about it, in that moment, that’s what generally diffuses it. Sharing how I’m feeling, however ugly, scary, upsetting or uncomfortable, with someone who cares about me, whom I trust, who can make me feel less alone, is what helps me through it. I think people worry that they won’t know how to respond, that they won’t have a solution, that they won’t know how to ‘fix me’. But they don’t need a solution, I’m not asking for a solution, or to be ‘fixed’. Just be there, just listen, just let me talk about how I feel, tell me you’re here for me and that I’m not alone, let me cry, let me feel I’ve been heard, tell me that what I’m feeling is ok and that you understand. I need people who will willingly give me their time, who will accept me and all the elements of my personality that make me ‘me’, people who can be patient with me, especially if I need to go over and over the same conversation, people who can be kind to me when my depression and anxiety are making me be unkind to myself.

Ultimately I try to remember that when I feel this way, I must not make a permanent decision based on what is likely a temporary feeling. With that and the fear of it going wrong and ending up worse off, and the thought of someone having to find me afterwards, is what has stopped me so far. But it’s an incredibly painful battle each time, it’s the worst thing I’ve ever experienced in my life.

What I just said about needing people to accept me and all of the elements that make me, ‘me’. This would include not telling me, when I’m in a pit of depression or an anxiety spiral, that I’m ‘too sensitive’, for example. I am a sensitive person, but I’ve come to learn that that’s not a bad thing. I’ve grown up with people telling me that I’m ‘too sensitive’, and it’s always come across as accusatory, or derogatory, so I used to think it was something to feel ashamed about, that it made me weak. But this is actually a really important part of who I am, and I wouldn’t change it. I’m able to tune into and understand my feelings, and it helps me tune into the feelings of other people too, it’s what gives me empathy. I would like it if this sensitivity didn’t impact as heavily on my anxiety and depression as it does, and this is something I am working on with my counsellor. For example, I’m very sensitive to how my actions affect others, when I find out that I’ve hurt someone, it hurts me, deeply. My anxiety will then take hold of me, I’ll agonise over it for days, weeks, months or years (I can still feel anguish over things that have happened decades ago), and it won’t let me move on until I have resolved it. It’s exhausting, it prolongs the upset, it keeps my body in a constant state of fight or flight, and that impacts heavily on my ME symptoms.

I asked my counsellor recently, in desperation, how I could stop letting things that upset me, upset me. This led to a conversation that actually resulted in me feeling a lot better about who I am. I can’t just change the things that make up the elements of who I am, and I certainly wouldn’t want to erase my sensitivity completely, not if it meant losing my empathy. I like empathy. I think it’s a highly admirable quality, and it’s the quality I value the most in others. I’m not suggesting that I’m better than anyone else, or anything. But I have always considered what my actions, or my words might mean to another person. One of my faults is that I tend to expect the same from others, and I judge them for not living up to my high standards, and the only person who gets hurt by that, is me.

Anyway, It’s not surprising how frequently people with ME develop depression and/or anxiety. We’re grieving for everything that we’ve lost, and the grieving process works the same way whether it’s due to the loss of a loved one or the loss of your health. I’ve grieved for people, I know what that’s like, I still feel pangs of grief when I think about my dad. When it’s unexpected, like when I come across an old photo, or I have a dream about him, I get a jolt of emotion that rushes through me, often picking up other memories and feelings on the way. I can think I’ve been doing ok, in terms of my dad grief, but I can very quickly turn into a panicked sobbing wreck when triggered unexpectedly. And he died ten years ago (it was ten years on 4th June). I’m still a newbie in the ME world, four years in, and I’m still very much dealing with the loss of my old life, and the loss of everything that I thought my life could become. I can be having an ok day, where, despite the sheer shittiness of my illness, I can be feeling fairly calm and content with what little I have. But then, BAM, something comes along that triggers the grief and throws me off course. I’m talking panic attacks, hyperventilating, the nervous dread and when it becomes too overwhelming, and when I feel that I’m dealing with it alone, suicidal thoughts. Sometimes the grief makes me curl up into a ball and just cry and cry, sometimes I just want to tear the room apart with pure rage and anger, sometimes it just renders me numb, flat, completely emotionless, and sometimes it makes me want to die.

For a while I really thought I was doing so much better, in terms of accepting my illness. But I’m not doing well, not at all. It’s kind of been compounded recently due to the payback I’ve been suffering since Iceland and also with my current PIP (Personal Independence Payment – a UK disability benefit) application. At the moment I’m trying to cope with the knowledge that this particularly bad relapse is probably due to my own decisions. The trip to Iceland to see Sigur Rós, going to my mum’s house for three hours to spend time with my family for a belated Christmas celebration only four days after returning from Iceland, then the screening of Unrest just thirteen days after that. The trip was at the end of December, and I still haven’t returned to my pre-Iceland levels of ME, and I don’t know when or if I ever will. Some ME relapses are permanent, and right now, I’m trying to deal with the fact that I may have done this to myself. This has caused what I can only describe as a shitstorm of emotions and symptoms; grief, anger, guilt, hopelessness, anxiety spirals, panic attacks, and suicidal thoughts. All of this emotional over-exertion of course impacts on my ME, and causes those symptoms to worsen. When this happens I wish I could talk my way out of it, but I just can’t. It’s actually entirely rational, to grieve over the loss of ones own life, whilst still being alive. I do believe that feeling these feelings will help me on my way to acceptance, more so than repressing them anyway.

My PIP application. I’ve put this off since 2015, my first attempt was just so traumatic, but I need the money, and I am eligible, it’s just a matter of convincing the people at the DWP. I haven’t received the ‘How your disability affects you’ form yet (I requested it two weeks ago) but in the meantime I have been preparing for it. This means I’ve spent a lot of time thinking, in depth, about how my illness affects me, which is the exact opposite of how I usually try to cope with this. I’ve lost my independence and my freedom, I do not live my life as I want to, I don’t even live where I want to. My entire life is now entirely about compromise and adaptations, based around my ME. I’ve made so many adjustments to my life in order to manage my illness. I’m used to the fact that I now only wash once per week, rather than once per day, as I did pre-ME. I’m used to the fact that I only eat twice per day, rather than three times per day, as I did pre-ME. I’m used to the fact that I can’t leave my house every day, as I could pre-ME. My day-to-day life is now built around my limitations, and sometimes, I feel quite proud of the way I’ve adapted. My life now, while completely unrecognisable when compared to my pre-ME life, is simply, my life. It is what it is. But now, as forced by my PIP application, I have to really think about how my illness affects me, and not in a ‘I’m proud that I’ve adapted’ kind of way, but in a ‘bloody hell this is thoroughly depressing, my life is total shit, I can hardly do anything anymore’ kind of way. I used to manage sixteen hours of non-stop activity during a day, now I struggle after fifteen minutes of activity. My capacity for doing stuff is now around 10% of what it was before I was ill. When writing it down for my PIP form, and explaining why I can only wash once a week, and how it affects me, it’s nothing to feel proud of, it’s depressing. When I write about why I can only prepare two meals per day, it’s depressing. When I explain why I can’t leave the house every day, it’s depressing. I expect this has a lot to do with the current state of my depression.

I mentioned the isolation. This is a huge factor in the state of my mental health too. I’m an introvert, I enjoy my own company and before ME came along, solitude was a choice for me, a luxury, even. But my depression and anxiety have turned me into someone who fears to be alone. When I get this nervous dread, I panic at the thought of having a day without human company. But I also have severe ME, so I don’t have energy to interact with humans every day, when I do, my ME symptoms worsen. So it’s a constant unwinnable battle between my ME and my mental health. Even with my introverted tendencies, I/humans need interaction with other humans, real life interaction. Social media is great, but it doesn’t compensate for the lack of real people in my day-to-day life. Add in the fact that I spend my days in the dark, because I’m sensitive to light. I also spend my days in an artificial silence, always wearing either noise cancelling headphones or ear plugs, because I’m hypersensitive to noise (and I currently have some rather loud neighbours, human and canine). I’m either huddled alone in bed, or alone on the sofa. Maybe I could cope with it a bit better if I could get lost in a book, but I have brain fog, I can no longer follow a story line, I can’t retain or process new information. I tried audio books but I can’t cope with them either, I simply don’t possess the required levels of concentration, my wreck of a body cannot produce the energy needed. Who knew, before I had ME, that reading, something I did every day, getting through roughly one novel per week, could one day be an impossibility. I have loads of TV shows and films in my Netflix and Amazon Prime watch lists, but at the moment I can only watch what I’ve seen before, because I can’t keep up and follow new story lines. I have a few TV shows that I keep on reserve for easy watching –  Grey’s Anatomy, The Big Bang Theory, 24, Parks and Recreation, Gilmore Girls, Little House On The Prairie, Gossip Girl, Friends… Re-watching these shows, as well as helping me to pass the time, I find it comforting, the familiarity of the characters. It’s the closest thing I have to going to work with the same people every day.

I’ve mentioned before that I’m a member of Dignitas (a Swiss non-profit members society providing assisted/accompanied suicide to members of the organisation who suffer from terminal illness and/or severe physical and/or mental illnesses). Dignitas, for me, is a separate topic, it’s not about depression, I actually became a member before I had depression. It is not based on fleeting suicidal feelings or fluctuating depressive episodes, it isn’t a knee jerk reaction, it’s not something I can’t understand, it is not something that scares me. Even when I’m feeling at my best, both in terms of ME and my mental health, Dignitas is still an option, and a rational option at that. If I decide to go this way, it will be based on rational and careful thought and discussion with my GP and counsellor. I won’t even get the provisional green light from Dignitas if they don’t trust my decision and believe me to be of clear and rational mind. Knowing that that Dignitas is there gives me comfort. The application process is daunting though, in terms of the paperwork, and it’s expensive. Just to make the initial request, that may be turned down, costs over £2000. Some people make that request and pay the money, get the provisional green light, but not follow through. Apparently, gaining that initial green light, can provide an additional layer of comfort, that allows people to keep going, knowing they do now have that option. That might be an option for me too at some point. I do think, when/if the time comes that I simply do not want to carry on with my life as it is, Dignitas is a much better option that suicide by my own hand, and so much easier on those who are left behind. Ideally, assisted/accompanied suicide will one day be legal in the UK, or Scotland, but I can’t see it happening anytime soon, the UK are rather behind, when comes to some things.

At the moment, in terms of ME, there is a feeling of potential change in the air. The film Unrest and the charity #MEAction have done so much for the awareness of ME worldwide. My mum attended the Invest In ME Research annual conference last week and heard some of the most prominent scientists in the field of ME research speak, she said there was a feeling of hope in regards to the current biomedical research. The NICE (The National Institute for Health and Care Excellence – the UK Department of Health organisation who provide guidance on the appropriate treatment and care of people with specific diseases and conditions) review of the ME guidelines is on the horizon, and will be completed by 2020. My fellow #MEAction Scotland volunteers met with the Scottish Parliament Petitions Committee today to discuss our recent petition (online and on paper we ended up with around 7000 signatures!) in which we are calling on the Scottish Government to review the level of support for people with ME in Scotland, in terms of biomedical research, education for healthcare professionals and specialist care for patients (the link to watch this is at the top of the NEWS section below). Some MP’s, including Carol Monaghan, recently put forward a request to the House of Commons Backbench Business Committee for a full debate about ME in the Main Chamber at Westminster. This has now (kind of) been granted, not for the Main Chamber, but for a three hour debate about ME treatment and research in Westminster Hall. Hopefully this will lead to a debate in the Main Chamber of the House of Commons in the Autumn.

So there are people doing things, and I want to feel hopeful, but so have the people who have been living with ME for decades, and seen no change. It is possible that biomedical research will find the cause of ME, to then find there is no cure. It is possible that the NICE review won’t in fact change everything, or they may change the guidelines for the worse. It is possible that the Scottish Government and Westminster will continue to neglect people with ME. We still have a long way to go and I want to be able to hang on, but I don’t know how long I’ll be able to. I don’t want it to, but I’m currently living knowing that my depression may one day ‘get me’. At the moment I’ve told myself I can’t go anywhere before the NICE review in 2020. I like to give myself a date, something firm in the diary to cling on to. The NICE review might just change things for the better for people with ME in the UK, and I at least need to live to see what happens there. Hopefully by then, I’ll have found something else to live for, I’ll have managed to find meaning in my life, I’ll have found somewhere to live that makes me happy, comfortable and settled (and with less need for noise cancelling headphones), and hopefully I can keep that going, and keep pushing back that date in my diary, at least until I’m an old lady with lots of cats.

When I do die I want my body to be utilised for ME research. If you live in the UK, this is how you can help progress ME research after you die. The ME Association is the only ME charity involved in the collection of post mortem tissue samples from people diagnosed with ME/CFS in the UK and their aim is to establish a national ME/CFS Post Mortem Tissue Bank where greater numbers of samples can be collected and stored for vital research. Learn more here:

http://www.meassociation.org.uk/research/current-research/post-mortem-tissue-bank/

Follow these links to mind.org.uk to learn about depression and anxiety.

Depression

Anxiety

 

NEWS

The Scottish Parliament Public Petitions Committee hear evidence from Emma Shorter and Janet Sylvester of MEAction Scotland and Professor Chris Ponting, Chair of Medical Bioinformatics at Edinburgh University and Deputy Chair of the UK CFS/ME Research Collaborative.

https://www.scottishparliament.tv/meeting/public-petitions-committee-june-7-2018?clip_start=10%3A10%3A46&clip_end=10%3A55%3A21

Futurism. Scientists are now calling the link between depression and inflammation caused by a faulty immune system definitive. Whether it’s causal or not, the connection opens up new avenues for treatment, and new hope for sufferers. 

https://futurism.com/researchers-depression-may-be-a-physical-illness-linked-to-inflammation/

ME/CFS Research Review. A team led by Edinburgh University’s Professor Chris Ponting has won funding for a PhD student who would follow up and expand on remarkable recent findings made at Stanford University, where Dr Mark Davis may have pinpointed a major issue in the immune system in ME/CFS.

https://mecfsresearchreview.me/2018/05/31/a-plan-to-replicate-mark-daviss-remarkable-findings-of-immune-activation-in-me-cfs/amp/?__twitter_impression=true

The ME Association. Inquest Ruling: Young drama student Merryn Crofts killed by ME.

http://www.meassociation.org.uk/2018/05/inquest-ruling-young-drama-student-merryn-crofts-killed-by-m-e-18-may-2018/

The Times. ME sufferer who was dismissed as hysterical vindicated in death.

https://www.thetimes.co.uk/article/me-sufferer-merryn-crofts-who-was-dismissed-as-hysterical-vindicated-in-death-lq9j2lc7w

Health Rising. The Migraine Drug Explosion Begins: Could Fibromyalgia and ME/CFS Benefit?

https://www.healthrising.org/blog/2018/05/19/migraine-drug-explosion-fibromyalgia-chronic-fatigue/

 

Post Twenty Four. Unrest In Peebles.

Last month I hosted a screening of the documentary, Unrest, at my local theatre, the Eastgate Theatre and Arts Centre in Peebles. If you’re new to my blog and/or are not familiar with the film you can check out the trailer Unrest Official Trailer, and you can read my previous post Post Nineteen. Time For Unrest..

When I first heard about Unrest I knew that I wanted to arrange a screening locally. This wasn’t just a film. It was the beginning of a movement. A documentary created by Jennifer Brea, that the rest of us (people with ME) could use as a tool to create change, and cure the ignorance. Unfortunately, and somewhat ironically, I realised early on that my own ME was going to prevent me from following through, and I planned to abandon the idea. But then my mum and my friend Heather stepped in and took over for me. I kind of coordinated it via email and made sure to guide them, but really they took on most of the organisation. Heather in particular took on pretty much all of the promotion, which, given most people won’t choose to see a documentary about an illness they’ve never heard of, know nothing about, or don’t think is real, was crucial. She did an incredible amount of work, and I can’t thank her enough.

It was very lucky that I felt well enough on the day to attend, especially given I was in a major crash having returned from a few days in Iceland only two and a half weeks beforehand, but the screening went really well and it was a really lovely evening. It was wonderful to see so many people there, and I was especially touched that so many of my friends attended, especially those who travelled down from Edinburgh on a work night. There had been weather warnings in place and the evening before the screening I was pretty sure none of the Edinburgh lot would make it. I felt disappointed, but of course their safety had to come first, given the risk of snow and ice on the roads. But thankfully on the day of the screening the weather cleared, the roads were black and they almost all made it. There wasn’t enough time to catch up with everyone properly, but there were lots of greetings and hugs in the foyer of the theatre in the twenty minutes before the film. Having so many friends there was really amazing. It sounds sickeningly schmaltzy, but I could feel the warmth of all the people who were there, to support me. I think that evening was genuinely the happiest I’ve felt in a really long time. For a short while I really felt like Phoebe again, and for a moment, with the buzz of the activity in the foyer, I almost forgot why we were all there. It was only when I sat down in the auditorium, and the film began to roll, that I remembered, we were all there to watch Unrest together. For the first time, my friends are going to see a glimpse of my life. It was a big deal.

Since having ME, my friends and family only see me on my better days. Only my mum has seen me at my worst, although, saying that, she hasn’t seen me when I’ve been reduced to crawling, so even she hasn’t seen me at my very worst. Having company when I’m having bad days, or even on normal days (depending on my individual symptoms), just isn’t an option. Partly because I don’t have the energy to interact with people, but mainly, I simply cannot stand to have anyone else in the same room when I’m suffering that badly. The sounds, the movement, just feeling the energy of another person there, is unbearable, and painful, in ways I just don’t know how to describe. It’s a really weird symptom of ME.

Anyway, when the film began, the enormity of the evening, and what my friends were about to see, in my presence, really hit me, and I had a bit of an emotional reaction. I had to work really hard to hold in the tears, and I’m not just talking watery eyes, I could feel my whole body starting to shake, it felt like I was beginning to hyperventilate. I closed my eyes and concentrated on my breathing. Once I gained control of myself, and had acknowledged to myself what a significant occasion the evening was, but it was all good, I was able to watch the film without any further emotional breakdowns.

After the film we had a short break and then the scary bit began, I took part in an informal Q&A session, along with Vicky, a new friend who lives locally, and mother to a teenage daughter who has severe ME. My mum had the job of running around with the microphone.

I had months to think about what I wanted to gain from the evening. There were certain topics that I really wanted to share with the audience. I just had to hope that they would ask the right questions. Luckily I managed to work these into the discussion. Mainly, I wanted to give the audience an understanding of the politics and the controversy surrounding ME research and treatment in the UK, the PACE Trial, and the upcoming review of the treatment guidelines for ME by NICE (the National Institute for Health and Care Excellence), whose guidelines are used by the NHS.

I wanted people to understand what the main, and cardinal symptom of ME is, Post Exertional Malaise. It’s not fatigue, as many people think. PEM is THE defining symptom, it’s what sets ME apart from every other fatiguing illness, without it, you don’t have ME. But the word ‘Malaise’ is awful. When I hear it, I a picture a swooning Victorian lady, lying on a day bed being fanned by her maid. Whereas the reality is brutal. I wrote about this in my last post so I won’t go on, apart from this, someone I follow on Twitter recently described PEM as meaning, ‘all systems go’, when each and every symptom flares up in a violent attack on the body. That, I can relate to.

I also wanted to challenge people’s perceptions that they have about chronic illness, especially in terms of the invisibility of ME. This is something that bothers me. People often comment on how well I look, and I get that the sentiment is coming from a kind place, and I expect they mean it as a compliment. But I find it a bit odd, and tiresome. While I know that there’s no malice behind it, it’s not something I take as a compliment. You can tell that me I look nice, if you think I do, but there’s no need to tell me that I look well, when you know that I’m not. I have an invisible illness. Phoebe with ME looks just the same as Phoebe without ME. Telling me I look well, it really doesn’t mean anything, but it does ignore the very real internal battle going on inside my malfunctioning body, and this kind of invalidates the very real everyday struggle of living with ME. It also plays into the fear (reality) that everyone with ME shares, that people don’t believe us. The fact that we, on the whole, look well, is one of the reasons why doctors dismiss us, it’s why we don’t get disability benefits, it’s why we get abuse for using a Blue Badge, it’s why we get reported to the DWP for benefit fraud, it’s why the general public believe we are either lazy, or faking it. I’ve had close friends, on seeing me wearing make-up, with freshly washed hair being chatty and smiling, insist that I must be doing better. I tell them that I’m actually not, it’s just the make-up etc. But they still insist that there must be more to it, and none of my insisting that there is in fact, not more to it, changes their minds.

I only tend to look ‘unwell’ on the bad days, when in a crash. And when I’m in a crash, you don’t see me. So on the occasions that you do see me, it’s when I’m having a better day. But don’t be mistaken, on these days I am still seriously and chronically ill. It does not mean I am recovering, it only means I am having a better day, or a better few hours. I am still, overall, just as unwell as I was during my last crash. Some people however, just don’t get it. Sometimes I feel that I should make an effort to look less well, so that I’ll meet other people’s expectations of what a chronically ill person looks like. It does frustrate me, big time. The fact that some people don’t get it, I guess it means I’m not doing as good a job of educating people as I had thought.

So one of my goals of the evening was to let people see, via Unrest, what we tend to look like during a crash. And how quickly we can go from looking well and happy, to lying on the ground in a fetal position screaming and crying out in pain. I can’t help but wonder how many people at the screening struggled to rationalise the story they saw on film, and the story I tell them, with the Phoebe they saw in front of them that evening. I had made an effort with my make-up and I wore a pretty dress (it got compliments, as did I actually). And because I was excited to be out, and to see so many friends, I’m sure I came across as happy and animated. Which I was, but I also felt unwell, because I have ME, and ME is chronic, which means I always feel unwell.

Another goal of mine, not just with the screening of Unrest but with my blog too, is to help people see ME for what it is. I dream of a world when we can tell someone we have ME, and they would immediately ‘get’ it. They would understand the gravity of what they were being told, in the same way as they would a Cancer, Alzheimer’s or Parkinson’s diagnosis. I wish that one day we will have the ‘luxury’ of just being ill, without the stigma, the disbelief, or the need to tirelessly educate everyone around us. As an example, my dad was the first person I knew who had (early onset) Alzheimer’s. Before his diagnosis I had little knowledge about Alzheimer’s, what I knew was only what I had learned in passing, I guess mainly from TV, and news articles. But, when he was diagnosed, I did know it was bad, I knew it was the worst outcome given the other possible options. I knew his life was effectively over, I knew he would never be the same, I knew he would stop being ‘dad’, I knew it meant he’d have it forever, and I knew he would die because of it, and this was before I’d done any active research on the disease.

People don’t get that about ME. Until they actively research the illness, they don’t know that it’s incurable, they don’t know that not everyone recovers, they don’t know how disabling it is, they don’t know how dangerous over-exertion is, they don’t know that we have no treatment options. They don’t know that people with ME have been found to have a lower quality of life when compared with other major illness, they don’t know that people die from it. They don’t know how common it is, there are an estimated 250,000 sufferers in the UK, in comparison, there are 100,000 people with MS, and 145,000 people with Parkinson’s. Everything they think they know, is wrong. They think we’re ‘just tired’, they think it’s psychological rather than physiological and they think we can cure it with lifestyle changes. Now I include myself in this, I wasn’t as ignorant as some/many people I’ve come across, but I had no idea when I was diagnosed how serious  and life-altering it was. This needs to change. And to do this we need to help the general public gain a basic, but accurate knowledge of ME, and I think Unrest has taken us one step forward in achieving this.

Unrest has had a huge impact, for which I’m very grateful. But there’s something that has been bothering me. I’m in a few ME social media support groups and am a fairly active member of the ME Twitter community. I have heard many accounts from people with ME, all over the world, whose family and friends were sceptical of the severity, or even the existence, of their illness. It was only after watching Unrest, that they came around and believed them. This has happened with me too. I’ve had a handful of people who have basically been silent since my diagnosis three years ago, who thought that I was ‘just tired’. But then they watched Unrest, they broke their silence, and they now believe me. It’s wonderful that Unrest is having this impact. But, it does bother me that these people had to hear it from someone else (Jennifer Brea) before they would believe me. Why was I, the person who is in their life, who has ME, not a credible enough source? I cannot wrap my head around this. When someone tells me about one of their traumatic experiences, something that I’ve never been through, whether an illness, a divorce, an abusive relationship, a miscarriage, or whatever, I believe them. I don’t need proof. I don’t need to see evidence in the form of a polished, critically-acclaimed, well edited, beautifully scored award winning film. I think this points to a few things; the level of stigma that exists when it comes to ME (the whole lying, lazy, work-shy, benefit scrounging, hypochondriac, malingerer thing), the fact that this illness is so much more disabling than a healthy person could possibly conceive of, and maybe there’s some fear in there too, these people don’t want to admit that such an illness exists, because if they do, then they have to acknowledge that it could happen to them. I guess, like Jen’s doctors, some people do need to see it on video, with their own eyes, before they’ll believe it.

Anyway, the Q&A went well I thought. I was able to mention the flawed and now thoroughly debunked (but not yet retracted) PACE Trial. The only clinical trial in the UK to be funded by the DWP (Department for Work and Pensions), the people who decide if we get disability benefits or not. The reported results of the trial stated that we could be cured by CBT (Cognitive Behavioural Therapy), which would cure us of our ‘false illness beliefs’ and our ‘fear’ of exercise. Once cured of those pesky false beliefs then we should take part in GET (Graded Exercise Therapy) and hey presto we’re cured. Except we’re not, we get worse, or in some cases, we die. GET has been proven to be harmful to people with ME. The authors of the trial inflated their statistics, which was only brought to light after they were made, by court order, to release their raw data for reanalysis. They changed their definition of what constituted as ‘recovered’ midway through the trial. Participants could finish the trial worse than before they started, and were still counted as recovered. This trial is now widely known as a very good example of how not to run a clinical trial. But, and this is an absolute atrocity, the results of this trial are still used as the basis of the current treatment guidelines, not just in the UK, but worldwide. The results of this trial also influence our access to disability benefits. Claimants are often told they won’t get anything if they don’t first undertake CBT and GET. Now isn’t it interesting that this trial was funded by the DWP…

For more information about the PACE Trial you can read my previous post Post Seventeen. The PACE Trial Scandal. and Post Twenty Two. Reblog. An Interview with Dr David Tuller. .

Thankfully, although I’m not feeling optimistic about it, NICE have agreed to review their guidelines for the treatment of ME. It’s in the early stages and won’t be complete until 2020, and in the meantime they still recommend CBT and GET as treatments, which is unfortunate, and I think, criminal. After the first stakeholder meeting last month I was feeling optimistic, and I shared this at the Q&A. Professor Mark Baker, the Director of the Centre for Guidelines at NICE had said during the meeting “We are going to tear it up and start again. We won’t allow it to look the same.”, he also apparently (I read in an account by someone who was there, you can read it here) reiterated several times that the guideline was to be replaced in full. I found this reassuring. But not long after this, he pretty much backtracked on what he said at this meeting. So my optimism is now thoroughly out the window. You can find a link to the most recent update by NICE in the news section below. I have also shared a link to the communication between the UK charity, Invest in ME Research and Professor Baker.

Included in the film Unrest, is the story of Karina Hansen, a young Danish woman with ME who was forcibly removed from her home, and her parents, and institutionalised. The authorities in Denmark believe that ME is a psychological illness, and that her parents were indulging her false beliefs that she was ill, so she was removed, for ‘her own protection’. She was kept from her family for three years, when she was allowed to return home, her ME had deteriorated. You can read the full story here. What Vicky and I also wanted to convey during the Q&A was that this was not one isolated case, this also happens in the UK, to children. There are also hundreds of cases in the UK of parents being reported to social services for the mistreatment of their children, because they have refused to force them into CBT and GET, knowing it would harm them. Tymes Trust is the only national UK ME charity dedicated to children and young people with ME and their families. You can find their website here, for more information.

So those were the main things that I wanted to share during the Q&A, which I was able to. I feel it’s important that people know about the abuse, neglect and mistreatment that we, the people with ME face. I don’t think anything will change until the general public are angry enough to help us fight this. Unfortunately, because it was almost a month ago, I don’t remember all the questions that were asked, if anyone who was there would like more information about anything please do contact me. You can contact me in the comments below, or using the Contact page, or via Facebook or Twitter. I’d also really like to hear what people thought of the film, what was going through your mind on the way home, not just after this screening, but wherever you saw it. Please share in the comments! For me, the goal of the screening was to educate people, and I left the theatre that evening feeling happy and proud. But what was more valuable for me, was that moment of feeling ‘normal’, even though it was just a few minutes, I felt like pre-ME Phoebe. I was out, dressed up, in a theatre, surrounded by people, in my natural habitat. I genuinely forgot for a little bit that I had ME, and that’s never happened to me before. ME dominates every single moment of every single day, there’s usually no forgetting. Another good thing that came out of this screening was, after the fees were paid for the venue hire and the film licence etc, it turns out we made a profit! £342! We are, or already have, donated this to the UK charity, Invest In ME Research. 😀

Again I’d like to thank my mum and Heather for organising this screening. I do think it’s probably one my biggest accomplishments since having ME, that and this blog. I’m really proud that we pulled it off, and it just wouldn’t have happened without my mum or Heather. I would like to thank Vicky for joining me on the panel for the Q&A. I would also like to thank everyone at the Eastgate for their help in making this happen, the audience who came along for the film and/or the Q&A and everyone who took part in the discussion. And of course all the people who have ME who came along, you’ll all have suffered for it, I certainly have (that’s why this post is a month late), thank you so much for joining us, and well done!

One last thing. Thank you everyone who commented on and contacted me after I published my last post. As I’m sure you realised it was a tremendously difficult thing to share, to expose myself like that (if you read it you’ll know what I’m referring to). I expected silence, or maybe even judgement, so the kind and supportive comments really meant a great deal to me. Thank you.

 

NEWS

NICE announces next steps in updating its guideline on ME/CFS.

https://www.nice.org.uk/news/article/nice-announces-next-steps-in-updating-its-guideline-on-me-cfs

Invest in ME Research. Communication with Professor Mark Baker, Director, Centre for Guidelines, National Institute for Health and Care Excellence (NICE), in regards to the upcoming review of the current NICE guidelines for the treatment of ME.

http://www.investinme.org/IIMER-Newslet-1801-01.shtml#IiMER-reply18-2

Invest In ME Research. Statement Following Preliminary Phase III Rituximab Clinical trial Results from Norway.

http://www.investinme.org/IIMER-Newslet-1802-01.shtml

Health Rising. The Cortene Way: New Drug to Be Trialed in Chronic Fatigue Syndrome (ME/CFS) Soon.

Part One. https://www.healthrising.org/blog/2018/02/08/cortene-way-new-drug-trialed-chronic-fatigue-syndrome-mecfs-soon-pt/

Part Two. https://www.healthrising.org/blog/2018/02/17/cortene-chronic-fatigue-syndrome-hypothesis/

The ME Association. A recent study from a research group at Newcastle University has found elevated BNP levels in ME/CFS associated with cardiac dysfunction.

http://www.meassociation.org.uk/wp-content/uploads/MEA-Summary-Review-Elevated-BNP-and-Cardiac-Function-in-MECFS-14.02.18.pdf

The ME Association. Two research studies recently reported similar findings relating to the autonomic nervous system in people with ME/CFS.

http://www.meassociation.org.uk/wp-content/uploads/MEA-Summary-Review-Dysfunctional-ANS-in-MECFS-24.01.18.pdf

The ME Association. A new study suggests that a blood test following exercise may be a very good way to differentiate between people who have ME/CFS and people who don’t.

http://www.meassociation.org.uk/2018/02/stanford-scope-exercise-elevates-blood-signature-difference-between-people-with-without-me-cfs-16-february-2018/

Article about ME in the current issue of Family Doctor – a publication produced by the New York State Academy of Family Physicians. Starts on page 23.

http://www.nysafp.org/NYSAFP/media/PDFs/Family%20Doctor/Family-Physician-Winter-2018WEB.pdf

BuzzFeed News. A senior Judge has suggested charging the government for every “no-brainer” benefits case it loses in court. Sir Ernest Ryder, senior president of tribunals, said the quality of evidence provided by the Department for Work and Pensions is so poor it would be “wholly inadmissible” in any other court.

https://www.buzzfeed.com/emilydugan/most-dwp-benefits-cases-which-reach-court-are-based-on-bad?utm_term=.vqgePgKO6#.uo3pa6Eoy

Post Twenty Three. Wheelchair’s First Holiday.

FYI. This is a really long post (7400-ish words). I considered splitting it in two, but it’s one story and I’d rather it be contained to one post. I know this will be hard going for those of you with ME, I always write these with our cognitive symptoms in mind, but ultimately I have to do what feels right for me. I would also like to give you a heads up that I bring up something in this post that may be upsetting for some people to read, and may be triggering to those who have experienced suicidal thoughts. I’m not writing about this for shock value, for sympathy or for pity. I simply want to be honest about my experience of living with ME, what it’s done to my mental health, and how I cope with it.

I haven’t yet shared the reason that prompted my decision to purchase a wheelchair. While my ME has been slowly deteriorating since the onset, it’s not that I had a sudden and drastic deterioration that left me with no option but to become a wheelchair user. I’m mainly house bound, and technically I guess I’m mainly bed bound, given I’m in bed for more than half the day, then I just transfer to the sofa. I think I’d accepted, and become so accustomed to this life, and my limited mobility, that it just didn’t occur to me that there was another option. It’s not even that I had previously thought about getting a wheelchair and discounted it, it honestly never crossed my mind, not once.

But then, in May last year, my favourite band, Sigur Rós, announced a series of concerts in Harpa, a stunning contemporary concert hall in Reykjavík, Iceland, between Christmas and New Year. Since I discovered Sigur Rós I had dreamed of seeing them perform in their homeland (Iceland, obviously), it’s been one of those ‘must do before I die’ things. So when I heard about these concerts of course I desperately wanted to be there. I began to wonder if I could possibly manage it, but it seemed practically impossible. The sensible bit of my brain knew I shouldn’t go, to not over-exert myself, to listen to my body, to do the wise (but depressing) thing and let it go. But then there’s the bit of my brain that is addicted to my pre-ME life, that wants to have fun, and do stuff that makes me feel happy and alive. I knew that if I decided not to go, the envy and devastation I would have felt would have impacted heavily on my mental health, which has already taken quite a battering in 2017. It was an impossible decision. Generally speaking my ME is far worse, and has much more of an impact on my life than my depression does. But when my depression has been at it’s absolute worst, there is nothing I have ever experienced that has been worse or more frightening than that. Frankly, this past year, my life has been in far more danger due to depression, than to ME. Although, saying that, I only have depression because of the life that ME has imposed on me, so it all comes back to ME in the end.

I eventually decided to put my mental health first, and make a dream come true, which, given ME has robbed me of all my dreams and goals, is something I never thought could happen anymore. As well as the concert I was also really excited about returning to Iceland. I had been five times before, and before I became ill I had even considered moving there for a while. The first time was with two friends at the end of 2013 for New Year’s Eve and I fell in love with the place. We went on a few day trips and did lots of exploring in Reykjavík. Desperate to go back I returned in September 2014 with another two friends, it was just for a long weekend in Reykjavík and was a kind of send off/celebration for my upcoming job in Antarctica. Then of course my illness took hold of me and I had to withdraw from Antarctica. With my would-have-been Antarctica departure date looming I needed a distraction, so with short notice (two weeks) I decided to go to Reykjavik for Iceland Airwaves. This is a music festival that takes place every November and I had wanted to go since my discovery of the greatness of Icelandic music (you can read more about this in my previous post Post Five. Music & Dad & ME). I had been to Iceland three times at this point but I still hadn’t seen much outside of Reykjavik, apart from some day trips, and I really wanted to explore more of the country. So, my mum and I began planning a two week holiday for June 2015. We were going to rent a car, stay in campsites and drive round the Ring Road (the road that runs around the island and connects most of the inhabited parts of the country). We had booked the car and planned our route, but as June got closer, and by this time I had been diagnosed, I realised it would probably be too much for me. So we discarded the road trip. But so I could still get an Iceland fix we went to Reykjavík for a long weekend that June instead. Before I was diagnosed, I had also arranged to go back to Iceland Airwaves in November 2015 with a friend. I did a lot of worrying in advance about how I’d manage, and while I managed less than my first Airwaves, I felt remarkably well, considering. That was my last holiday.

So this trip to Iceland for Sigur Rós was the first holiday I had planned since being diagnosed with ME. I knew it would be a bit of an experiment. My ME has deteriorated quite considerably since my last Iceland trip, so this would be a very new and unknown experience for me. I figured I would either discover that I can manage some light travelling, and it would open up more opportunities, or I would find that I was too ill to travel and to stay put in the future. It was while I was figuring out how I’d manage the practicalities of this trip, i.e getting around Reykjavík and the airports, that I first considered a wheelchair. At first I looked into renting an electric wheelchair in Reykjavík, but then that wouldn’t help me in the airports, and I really wasn’t keen on using an airport manual wheelchair, in which I would be dependent on someone else pushing me. Then I thought, if I were to buy an electric wheelchair, I could use it at home too, maybe it would help me get outdoors a bit more often. And if you’ve read my previous wheelchair posts (starting from Post Sixteen), you’ll know the rest.

Even after I had decided on the wheelchair though, and had raised the funds through crowdfunding, I still had massive doubts about the trip. I was excited, but I also felt incredibly anxious about it, and I wondered if I’d made a terrible, and expensive, mistake. I came very close to cancelling the trip on a few occasions. What sealed the deal was when the rest of the programme was announced (Sigur Rós were also curating a festival ‘Norður og Niður’ to run alongside their own concerts). There were many great acts in the programme, but there was one in particular that I was really excited about. They don’t have a band name, so it’s a bit of a mouthful, but they are three Icelandic musicians, all with successful careers as solo artists and/or in various bands, Sóley, Sin Fang and Örvar Smárason. During 2017 they collaborated together on a project in which they wrote, produced and released one new song every month, at the end of the year each of those songs would make up an album. I like their music individually and in their bands so I did anticipate that I would like their collaboration project. I was right, it’s a gorgeous, kind of melancholy, but utterly beautiful collection of songs. I also loved the concept of releasing one song per month. In what was a terribly difficult year for me, these three Icelanders gave me something to look forward to each month.

This is the beginning of the difficult bit…

I have never gone into this in any real depth, I may have hinted towards it previously, and I’ve only told a handful of people (my GP and counsellor being two of them), but I’ve yet to state it outright. Here it goes… for the last two years, I have battled with suicidal thoughts, and sometimes, it’s become more than just thoughts, I’ve made plans (and by plans, I mean DIY plans, not my Dignitas membership, which is an entirely different matter, something I’ll expand on in a later post). But, and this is important, most of the time, I don’t want to die, especially not by my own hand. It’s just that, living with ME is hard, except that’s putting it mildly, it’s hell on earth. There’s a reason why ME comes out at the bottom in quality of life studies when compared to other major illnesses (Click here to learn more). ME devastates lives, it’s destructive beyond anything a healthy person could imagine. My world is now so small and my life so limited, and I live in almost complete isolation and constant pain. Most of the time, my existence can barely be considered living. But, during a year in which my life became, at times, just too painful to bear, this music, this promise of a new track at the end of each month, was something to hold onto. That seems to put an awful lot of pressure on these musicians, which is not my intent. It’s not that I wouldn’t be here now if it wasn’t for them. If I hadn’t had their monthly musical treat to look forward to, I would have found something else. That’s how I cope with this, I’m constantly having to find something, anything, to look forward to. I force myself to find something to make this existence worth living, all in the hope that I can keep this up until science catches up, and a cure, or a treatment is found.

Anyway…

Even with this marvellous announcement, I still wasn’t sure. When I bought the two tickets for Sigur Rós (for my mum and I) I had thought that the festival events were included in the price, I was wrong (or maybe Sigur Rós could have been clearer). To see Sóley, Sin Fang and Örvar Smárason I would have to purchase a four day pass. That’s a lot of money for only one concert. Then they announced a one day pass, which was a better option of course, but, I would need to buy two, one for me, and one for my mum, who is also my carer, and I couldn’t go without her. As much as I love Sóley, Sin Fang and Örvar Smárason’s music, I couldn’t justify the cost of two day passes for just their concert. Given my ME based limitations I knew that their concert would literally be the only thing I did that day, and I couldn’t spend £150 for the two of us on top of what I’d already paid for Sigur Rós. So then, and I’m not sure what gave me the guts to do this, I’m notoriously bad at asking for help, I reached out to Örvar Smárason on Facebook and explained my situation. To my amazement, he replied to my message, and he couldn’t have been kinder. He arranged two complimentary day passes so that I could attend their concert. He didn’t have to do this, and I seriously can’t thank him enough. I would also like to mention, and thank, a very nice chap called Darren who works for Sigur Rós. I believe he runs their social media (when he’s not answering my numerous questions about accessibility). He also went out of his way to assist me and I’m pretty sure that even without Örvar’s assistance, Darren would have also made it happen. So both of them, in my opinion, are absolute stars.

So it was all decided, we were definitely going. Now that the trip was confirmed, I began planning all the other bits and pieces, and I found, to my dismay, that organising a holiday when taking a wheelchair into consideration is unbelievably stressful. There are so many obstacles, and so many questions to ask, it’s unreal. Information that should be freely available, is more often than not, not. I really had to dig, push and pretty much harass in order to get my answers. It was a pretty unpleasant and thoroughly disheartening experience. The ableism I encountered was shocking. While ME is classed as a disability under the Equality Act 2010, and I am certainly extremely disabled by my illness, I have never felt more ‘disabled’. And by that I mean, never have I felt more of a ‘second class citizen’ in my life.

Ableism is the discrimination or prejudice against people who have disabilities. Ableism can take the form of ideas and assumptions, stereotypes, attitudes and practices, physical barriers in the environment, or larger scale oppression. It is oftentimes unintentional and most people are completely unaware of the impact of their words or actions.

One of the first enquiries I made was the cost of taxi’s in Reykjavík. On previous trips to Reykjavík, on arrival, I had always walked from the bus terminal to my accommodation, or taken the shuttle bus (no longer an option as buses are now banned from certain parts of the downtown area – which is a good thing for those who live there). This time, I knew I wouldn’t manage the walk, even with the wheelchair, as my mum would then be left with both suitcases, also, the pavements in Reykjavík might too icy for the wheelchair. In the event of icy pavements I would also have to get a taxi from our apartment to Harpa for the concerts, also a very short distance, and pre-ME, easily walkable. I’m in a Facebook group for tourists to Iceland, so I asked there. I made it clear that I’d been before, that I knew the distances I was asking about were very short, but could anyone tell me roughly how much a taxi might be. Now surely the only response to that questions is either, no response, or a helpful answer. But no. This is an example of what I got…

“If the weather is good and you don’t have a lot of luggage walking is easy.”

“I would walk both trips with ‘the long way around’…Plenty to see and feel if eyes and heart are open.”

“You can walk there. It’s about ten minutes.”

Right. Not helpful. It apparently didn’t occur to these people that I was asking this question for, you know, an actual reason. I’m very open about my illness, for the sake of advocacy, but, when I write or talk about it, it’s when I choose to. I didn’t feel I should have to share my medical history to the members of this group for a simple question about the cost of taxi’s. But in this situation, to get an actual answer that was relevant to my question, I felt I had no option but to give them more information about my health than I wanted to or felt comfortable with. They had clearly made an assumption that my mobility was the same as theirs, it didn’t occur to them that maybe I had different needs than they did. It really doesn’t matter how ‘open my eyes or heart are’, that ain’t gonna cure my chronic illness. This is what ablesim looks like, and it makes my blood boil. I had many other similar encounters in this Facebook group so in the end I abandoned it as a safe place to ask questions about accessibility.

Now, the venue, Harpa. Where to start. I had expected that a contemporary concert hall, in a country known for its progressiveness and inclusiveness would be a bit better with the whole accessibility thing. Wrong. Getting information from them was like pulling teeth. In the very first email I sent them, to the box office, in which I referenced Sóley, Sin Fang and Örvar Smárason’s concert, the reply I got was this… “Is this performance suppose to be here in Harpa too?”. And that was it. Not only did they not respond to ANY of my accessibility questions, they apparently didn’t even know that this concert, for which they had already begun selling tickets/passes for, was happening in Harpa. This was the beginning of what was a mainly long, disappointing and frustrating journey with the venue. They continued to ignore my emails and only acknowledged me after I went down the route of publicly shaming them on Twitter. Even then, while they did help me out on one matter, they couldn’t, or wouldn’t, answer my questions in regards to accessibility. In the end I got the information I needed from Darren (the Sigur Rós guy).

One of the things I needed to know was where I could securely store my wheelchair during the Sigur Rós concert, which was seated. I’d need my wheelchair before and after the concert, but not during. Harpa does have a cloakroom but it isn’t staffed, it’s based on trust, which I like, but, while I was ok leaving my coat there, I was not ok about leaving my brand new £3000 electric wheelchair there. Harpa told me that there was nowhere else I could store it, so I wouldn’t be able to bring it. I refused to believe this, the building is massive, there had to be somewhere safe it could go. It was Darren who then assured me that I could bring it, and they would find somewhere for it during the concert, even if it was in the production office. I also wanted to know if there would be a wheelchair platform in the standing venue for Sóley, Sin Fang and Örvar Smárason, so I’d be able to see them. On this matter Harpa simply ignored me. Again, it was Darren who told me there would be a platform (that turned out not to be the case, but more on that later).

The communication with Harpa, or lack thereof was I think the lowest point of planning this holiday. The venue should be able to answer these questions, and it just baffles me why they wouldn’t/couldn’t. Since I graduated (from the Royal Scottish Academy of Music and Drama, if you’re interested, I studied Technical and Production Arts), and before I began working for Cyrenians (Edinburgh based homeless charity), pretty much all my jobs were in the theatre/arts/festivals industry. I’ve worked in box offices, front of house, marketing, admin, event planning and venue managing. I’ve never been in a situation where I could not, or would not, respond to an accessibility enquiry (or any enquiry for that matter), even if I didn’t have the answer to hand, I would have found it. I do wonder, after the service I received while actually there (which was good, apart from the lack of wheelchair platform, which was really bad), maybe, while they are (sometimes) equipped for disabled customers, they’re mainly just really bad when it comes to communication and customer service. Saying that, one of the lifts in the building had a chair in it, which meant not quite enough room for my wheelchair, which made that lift kind of redundant.

I had a few issues with EasyJet too in regards to my special assistance request. I was told at the time of booking that someone would contact me to get more information, such as the model of wheelchair and type of battery etc, to ensure it would be allowed on the plane. I waited, and waited, and really began to panic, what if I showed up at the airport to be told my wheelchair wasn’t allowed on the plane, what would I do then?! My efforts to contact them weren’t very successful. But I eventually got a call, less than a week before departure, and again, only after I publicly shamed them on Twitter. I’m not a fan of publicly shaming, I would never do it to an individual, but with a company with shitty customer service, sometimes it’s the only way.

Our flight was on Thursday 28th December. It was my my first time using the special assistance service at an airport, and I was pretty nervous, but I really cannot fault them. All the staff involved made for probably one of the most stress free airport experiences of my life. The special assistance guy, the EasyJet staff, security, everyone was incredibly helpful. And, importantly, for me, there was no hint of condescension or pity and they didn’t infantilise me. I was getting ‘special treatment’, but I still felt I was treated as an equal. This was also the first time I’d used my new wheelchair in such a public place, I was nervous about that too, but it was totally fine. After my bumpy experiences on the wonky pavements of Peebles, the smooth surfaces in the airport were a delight! I also found that when a crowd of people notice a wheelchair approaching, they automatically part to form a space me for me to glide through, I felt like the Queen, or Moses. I also didn’t get any funny looks, that I noticed anyway, when people saw me get up from my wheelchair and walk, which was a relief. It’s almost as though no one gave a crap about me and my wheelchair! I was able to roll right on up to the door of the aircraft where I folded up the wheelchair and put on its travel bag. It’s pretty nifty, the bag, it has long handles and allows for the wheelchair to be moved like a wheelie suitcase, using it’s own wheels. My mum and I got to board the plane first and my wheelchair was safely placed in the hold.

Oh, I almost forgot. In my last wheelchair post I’d mentioned that the wheelchair was proving difficult to fold and unfold. Despite the tutorial videos it seemed like the only way was to take the full weight of it and give it a massive shoogle, which I struggled to do given the weight of it. It turns out there’s a knack, and on my last practice before the trip I mastered it. I expect the more it got used the looser it became which made the folding and unfolding process so much easier. Phew.

It was a straightforward and boring flight, luckily I had downloaded a David Attenborough documentary about a famous dead elephant onto my iPad which kept me occupied. On arrival at Keflavík Airport we were met at the door of the aircraft by a nice man with a manual wheelchair. He wheeled me inside so we could wait in the warmth for my own wheelchair. I’m still not keen on manual wheelchairs, but I complied. Although I almost got strangled by my scarf when it got caught in one of the wheels. As the wheelchair man untangled it my mum told me the story of Isadora Duncan, the ballet dancer who died when her scarf became entangled in the wheel of a car she was riding in. I paid more attention to the dangling ends of my scarf from then on.

So that was me back in Iceland. Hooray! I then pretty much spent three days in bed. Hmm. It was definitely not the kind of holiday that I was used to. I left the apartment a total of four times. Something I constantly worry about is being judged. And this worry isn’t unfounded, I frequently have people judge and make assumptions about the state of my health based on how I look and by my activity. I’ve had people insist that I was ‘doing better’ simply because I was wearing make-up. So I can’t help but wonder if there are people in my life who think that because I went to Iceland, I must be ‘doing better’. The same people probably don’t understand the adjustments and sacrifices I had to make in order for this holiday to happen. So, to ensure no misunderstanding, I’ve provided you with a breakdown of my daily activity while in Iceland. Oh, and if you’re wondering, the only way you can know how I’m feeling, is if I tell you.

Thursday. We took the bus from the airport to the bus terminal and from there we took a taxi to the apartment. This is when we learned just how eye-wateringly expensive the taxi’s are in Reykjavík. It cost around £12 to go roughly 800m. In comparison, when I take a taxi to go to the doctor in Peebles, which is around the same distance, it costs £3.50.

Friday. The day of the Sigur Rós concert! While my mum went out exploring, and to the supermarket, I stayed in bed all day to give myself the best chance of feeling not terrible that evening. Knowing I wouldn’t mange to eat out on this holiday (I was already massively overexerting myself by being there, adding restaurants into the equation with the sensory input would have been a bad idea), and to ensure our food would be Phoebe-friendly (which means no refined carbs, no refined sugars, no refined oils, no gluten and vegan) we brought most of our own food and topped it up with fresh veg from the supermarket. After resting all day and having dinner we set out for Harpa at 7pm-ish. The pavements weren’t as icy as I anticipated so I decided to give my wheelchair its first foreign test drive. What proceeded to happen was a 300m white knuckle ride along Bergstaðastræti. I found that Reykjavik’s pavements are not so wheelchair friendly. The uneven pavements had the wheelchair veering into the road. The dropped kerbs are not dropped enough, at one point the wheelchair tipped forward almost throwing me into the road. I was close to tears by the time we reached Skólavörðustígur, where thankfully we found a taxi to take us the rest of the way. This is where my foldable wheelchair comes in very handy, it’s so easy to fold it up and pop it in the boot. Pretty much every taxi driver we encountered marvelled at it! After that stressful journey, by the time we reached Harpa I felt quite shaken, which wasn’t ideal. But we found a quiet spot and had I some time to rest and de-stress before the doors opened. Then, and I had been dreading this, it was time to find out what would happen to my wheelchair. Thankfully it was all good. There was a small room between the auditorium and the stage which could only be accessed by staff and was the perfect spot to keep my wheelchair while minimising how far I would have to walk to my seat. It went so smoothly, and the staff were so helpful, it was as if they’ve dealt with this exact situation many times before. So why the box office told me it couldn’t be done? Who the hell knows.

Now, the concert. This was my seventh Sigur Rós concert, and while they are always incredibly good live, this was by far the best I have ever heard them sound. They were just so exceptionally good. I have no idea how three people can create what they do on stage. Granted they have some backing track (on previous tours they’ve had additional musicians on stage with them, this tour has been just the three of them), but I don’t think I’ve ever seen any band work as hard as they do, especially the drummer. I mean, he can drum while playing the piano, at the same time. I can honestly say that this wasn’t just my best Sigur Rós concert, this was my best concert of all time. I’m so happy I was there. While I would have loved to stick around after the concert and soak in the atmosphere, it was time to go. I had been out for around three and a half hours, which is the longest I’ve been out, since May I think, at my mum’s birthday/fundraising party. Oh, and before we left, I saw Jarvis Cocker in the foyer, which was pretty cool.

Saturday. Again, I stayed in bed during the day while my mum went out. I had no appetite at all that day, I think I felt a lot more anxious than I’d realised about that evening’s concert, more specifically, about using a wheelchair platform for the first time. I didn’t know what the gradient of the ramp would be, so I didn’t know if my wheelchair would handle it. I also worried that I might feel on display, sitting in my wheelchair, raised above everyone else, on my own, and sticking out like a sore thumb. Anyway, we took a taxi to Harpa, and, this made me feel quite fancy, I got to queue at the VIP/Guest Pass bit of the box office! We had some time before the concert so, thanks to the guest passes, we were able to briefly explore the cordoned off areas which had some exhibits, and various other interesting and weird stuff going on, I expected nothing less from a Sigur Rós curated festival. We didn’t explore for long as I wanted to join the queue for Sóley, Sin Fang and Örvar Smárason. It would have been a right bummer if having got the free day passes to then not get access to the venue because it had reached capacity. Now, remember how I was feeling anxious about the next bit? Well, turns out I didn’t need to. There was no platform for wheelchair users. I was mightily pissed off. No equal opportunities or reasonable adjustments for the disabled in this venue! I got chatting to a woman who also planned to use the non-existent platform, and I was interested to learn from her that in the venue right next door, also standing, there was a platform. So clearly the venue had the means, and had recognised the need for it, but when it came to this particular hall, they…forgot? Thinking alike we went to the very back of the hall, in the hope we might see over everyone, that didn’t work out, all I could see were people’s behinds. I was extra glad at this point that I hadn’t paid for the two passes. I didn’t feel I could complain though, given I was there for free, and it’s not like they could have set up a platform there and then anyway. But I did expect better, someone made a bad judgement call, which resulted in disabled fans being denied the same experience as able bodied fans. Since having the wheelchair, I’m learning a lot about the world.

But on to happier things. Ultimately I was there for Sóley, Sin Fang and Örvar Smárason, and while I tend to enjoy seeing the band I’m listening too, my ears do work, so I sat back and enjoyed the music. You’ll have gathered how much this concert meant to me, and it was really really lovely. It was a shorter set than I would have liked, just six songs, but that couldn’t be helped. Again, I was delighted that I was able to be there, especially as it was their debut performance, which made it feel that bit more special. After the concert we had a little rest in the foyer and admired the view (Harpa is stunning, inside and out) while the crowds dispersed. I then spotted Örvar in the crowd, so I rolled on over to say hello and to thank him, which I was really pleased to be able to do in person. This was my last evening at Harpa and I had hoped I’d meet Darren too, to thank him for putting up with me and my ten million questions, and to put a face to the name, but it wasn’t to be.

This is kind of off topic, but, while chatting with Örvar I learned that he had previously toured with the Scottish band Belle & Sebastian, with his band Múm. Afterwards I was thinking how funny it was that Belle & Sebastian popped up in our conversation, they keep doing that. I’ve been aware of them since I was a teenager, I actually have most of their albums. But it’s only since I’ve had ME and became part of the ME community that I found out that Stuart Murdoch, the founding member of Belle & Sebastian also has ME. In fact, if it wasn’t for his ME, Belle & Sebastian wouldn’t exist. It was during his time, isolated by this illness, that he began writing songs to express what he was feeling. When his health started to improve that’s when he began to look for musicians to form a band. They formed in 1996. All these years, and I’d never known.

“To talk about ME, it’s my life story. The biggest thing that’s ever happened to me….Every song I’ve ever written is about ME.” Stuart Murdoch at an Action For ME event March 2016.

Sunday, New Years Eve. Again, I spent most of the day in bed and my mum took a day trip to see some of the sights outside of Reykjavik. I did however venture out late afternoon to meet a friend for coffee. I found a coffee shop nearby that was open (most were closed for NYE), and not wanting another anxiety inducing wheelchair experience I walked. Luckily I had brought my walking stick with me. As well as meeting my friend it was also really nice just to walk, to use my legs, albeit unsteady and weak legs. One of my favourite things to do in Reykjavik is to walk around and explore. It has some of the prettiest houses, most of them lined with corrugated iron, and painted pretty colours. So that one hour outing, with the short walk there and back was my only proper Reykjavik ‘fix’. Then of course I went back to bed and stayed there until it was time to head out for the fireworks at 11.30pm-ish. I don’t like to generalise, but, Icelanders are crazy about fireworks. You won’t find perfectly choreographed displays though, they do their own thing. They buy their own fireworks, and then they spend the night blowing them up; in their gardens, in public squares, outside the church Hallgrímskirkja, on the street, on the surface of a frozen pond… I have experienced the insanity of NYE outside Hallgrímskirkja before, but on this occasion I needed somewhere with a seat, and less crowded. So we went to Tjörnin, the frozen pond, which wasn’t far from our apartment. It was a great location to watch the fireworks from, with almost 360º views of the firework lit sky. It was so cold though, and we were both pretty exhausted, so we didn’t stay out too long. We were however treated to a continuous stream of fireworks throughout the night!

Monday. We went home. It was a fairly uneventful day, the same as Thursday but in reverse.

I’ve been home for over a month now, and I have of course had people ask me how it was, and if it was worth it, and I don’t know how to answer. It’s really hard to get excited about the good bits of the holiday, while I’m feeling so dreadfully unwell. I went on this holiday knowing, with absolute certainty that I would suffer on my return, it’s not a matter of ‘if’, it’s an undeniable fact, it will happen. Post Exertional Malaise is THE defining symptom of ME. Going off topic again, but while I’m here, the word ‘malaise’ is so misleading in the context of PEM. Malaise is defined as ‘a general feeling of discomfort’, which is not in the least bit descriptive of what I experience after I’ve over-exerted myself. PEM is a severe worsening of all my symptoms, and it’s brutal. When I think about how best to describe it I immediately think about my worst ever hangover, but combined with my worst ever flu, with the fever, the sore throat, the headache, the aching body, the overwhelming weakness and lack of strength (to the point where I cannot lift my head, my arms, my legs, my entire body), the lightheadedness. Now add a migraine to the mix, along with cognitive impairment, bladder cramps, sleep disturbance, hands that feel as though they’re on fire (Raynaud’s Disease), painful skin, painful joints, painful muscles, ice pick headaches, loss of balance, disorientation, vertigo, orthostatic intolerance and severe sensitivity to light (photophobia) and sound (hyperacusis) in which overexposure makes it feel like my brain is going to swell to the point that it’s going to burst out of my facial orifices. This maybe begins to describe how awful it is. It’s when I feel my absolute worst, and when it drags on, I wish it would kill me. It’s basically a living death, and given I can reach this point by simply washing my hair, having a conversation, or cooking a meal, of course I was going to crash (a colloquial term for PEM, payback is another one) after Iceland, and it’ll probably be a matter of months before I’m back to ‘normal’.

Last year, when I was planning this trip, I needed it to feel alive and to give myself something to look forward to. I also needed it to help me figure out my limitations. Like I said earlier, I was also treating this holiday as an experiment. Before I went, I didn’t know how I would cope while being there. But I got through what little I did by using my wheelchair when I could, I paced myself and rested between activities. I’m sure I was also, to some extent, running on adrenaline, which of course isn’t sustainable. I also didn’t know how severe, or not, my payback would be. I hoped that by making sensible choices and sacrifices my payback would be minimal, which hasn’t been the case. So while my payback has been severe, I have learned something about my limitations. If I hadn’t gone, not only would I have had some emotional fallout to deal with, I would always be left wondering if I could have managed it. Now I know.

Unbeknown to anyone else, while I was planning this trip I did have it in the back of my mind that this could be the last time I go to Iceland, or on any holiday for that matter. And based on how little I managed while there, and what I’ve experienced since I returned, I think it has confirmed it for me. If my ME continues to deteriorate, or even if I plateau at my current level of disability, I don’t think I could do it again and I don’t think I want to. I fear that I have done permanent damage to my health with this trip. Holidays are meant to leave you feeling rested and refreshed, they should not leave you feeling so unwell that you begin to compose your letter to Dignitas. But this is the basis of ME, we are punished for doing the things we love.

I also learned something that I wasn’t expecting. I thought that just being in Iceland would be enough for me, but it wasn’t. It was frustrating being in one of my favourite places, the city that I had once hoped to live in, and not be able to see it. Reykjavík was right there, being dangled in front of me, but it was out of bounds. On this occasion I had a very specific reason to be there, but there would be little point in going back to Iceland, just for the sake of being in Iceland. It seems it’s easier to cope with what I’m missing, when it’s not right in front of me. It does upset me though, if my ME doesn’t improve at all, I’ll never get to see the rest of Iceland, and that makes me feel really sad.

Saying that, however, I wanted to fulfil my dream of seeing Sigur Rós in Iceland, and I’ve done it. And for all I know these concerts could be the last they play in Iceland, I don’t know what the future holds, for the band or for me. What if I hadn’t gone, and then they split up? What if I hadn’t gone, but by their next tour my ME might have deteriorated so much that I can’t attend? It was important to me to take this opportunity, however harmful, while physically I still could, the last hurrah before ME destroys me completely.  There’s something really special about seeing a band in their homeland, and in such an intimate venue (1500 capacity, that’s small for them) and they were better than I’ve ever seen them before. That was potentially a once in a lifetime experience. I was also at the debut live performance of the music that literally kept me going last year. It meant a lot to me, to be able to go and support Sóley, Sin Fang and Örvar Smárason, as they supported me. It’s amazing that I achieved these things, and I’m SO pleased I was there.

So while I spent the majority of my time there in bed, I guess I can consider this trip a success? I met my main objectives, I managed the four things I set out to do. Although I didn’t manage the other eighteen things that I had on my wish list, had I felt well enough (in case there’s any doubt, pre-ME, I would have managed everything on my wish list, plus some). But, because of just how badly I’ve been suffering since my return, I still can’t decide if overall, it was worth it. I think, at the moment, the people who are asking are just going to have to accept my very non-committal vague non-answer, that I don’t know.  I expect, when, or if, I recover from this crash, I’ll be able to answer differently. In the meantime I’ll snuggle up in my beautiful and cosy knitted Sigur Rós blanket (Christmas present from my mum) and my wheelchair will soon be adorned with a Sigur Rós Norður og Niður patch, which will forever mark it’s first holiday, and make it the coolest wheelchair in town. I would have liked a random encounter with the band, and have them sign my wheelchair, but hey ho, we can’t have everything.

After that long read I think you deserve a treat! So here’s a link to the finished album by Sóley, Sin Fang and Örvar Smárason, Team Dreams. I hope you enjoy it as much as I do, and if you do like it, you might want to consider buying it! 

 

NEW BLOG THING!!!

At the end of each post I’m going to be sharing recent research, news, articles etc on the subject of ME, or anything related, that I think are worth reading. I haven’t posted for a while, so I have quite a few saved up.

The Independent. Time for Unrest: Why patients with ME are demanding justice.

http://www.independent.co.uk/news/long_reads/why-patients-me-demanding-justice-millions-missing-chronic-fatigue-illness-disease-a8133616.html

Nature International Journal of Science. A reboot for chronic fatigue syndrome research. Research into this debilitating disease has a rocky past. Now scientists may finally be finding their footing.

https://www.nature.com/articles/d41586-017-08965-0?WT.feed_name=subjects_genetics

The Courier Mail. Australian scientists prove Chronic Fatigue Syndrome is real and have discovered a test for it. 

http://www.couriermail.com.au/technology/science/australian-scientist-prove-chronic-fatigue-syndrome-is-real-and-have-discovered-a-test-for-it/news-story/2f62ddcf2d5a625b0c1f185fc649bbf0

BBC News. I had it all – now I create a new world in a single room. As Prince’s art director, Michael Van Huffel became used to working at all times of day or night. But 10 years ago the debilitating neuroimmune condition ME left him barely able to move – since then he has had to find very different ways of making art, within the boundaries of a one-room apartment.

http://www.bbc.co.uk/news/stories-42404500#

The Independent. New Migraine Drug Hailed As ‘Incredibly Important’ Breakthrough.

http://www.independent.co.uk/life-style/health-and-families/health-news/migraine-drug-erenumab-headache-treatment-important-breakthrough-a8084181.html

Farewell – A Last Post from Anne Örtegren. Anne was a Swedish ME sufferer and advocate. She recently chose to end her life in Switzerland by Assisted Suicide. 

http://lobel.nu/anne.html

Journal of Translational Medicine. Improvement of severe Myalgic Encephalomyelitis symptoms following surgical treatment of cervical spinal stenosis.

https://link.springer.com/article/10.1186/s12967-018-1397-7

Interview with CFS/ME researcher Dr. Nancy Klimas.

https://www.cfs-me-network.com/2017/09/13/interview-nancy-klimas-cfs/

The S-Word. A blog post by Jamison Writes.

https://jamisonwrites.com/2018/01/26/the-s-word/