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 Thirty Five. Scottish Borders Council ‘Disability Tax’.

So technically it’s not a disability tax, but I am being financially penalised by Scottish Borders Council for two things that are completely outside of my control – one of them being my disability.

I shared the news of my new house in my last post, and while I’m delighted about it, it has resulted in an incredibly distressing situation regarding council tax. For non-UK readers – council tax is a tax levied on households by local authorities (of which mine is Scottish Borders Council) in Britain to pay for services in the community, it is based on the estimated value of a property and the number of people living in it.

For any new readers, I’ll start at the beginning…

I have severe Myalgic Encephalomyelitis (ME), a complex neurological disease involving profound dysregulation of the central nervous system, the immune system and dysfunction of cellular energy metabolism.

I first became unwell in February 2014 and in December 2014, at the recommendation of my GP and my employer, I had to stop working. I received my diagnosis of ME in March 2015, and in the summer of 2015 I had to move from my beautiful flat in Edinburgh back to my hometown Peebles. After my sick pay ended I couldn’t afford my mortgage and I was also struggling to live independently. By moving back to Peebles I could rent out my flat, which would cover my mortgage, and I would be closer to my mum, who is also my carer.

I had hoped that I would recover and eventually be able to move back to Edinburgh and continue living my life. Due to the steady deterioration of my ME though, I realised that this wouldn’t be happening, at least not in the near future. ME is currently incurable and there are no safe or evidence based treatments available. It’s a matter of managing my symptoms as best I can and just waiting and hoping that I improve a bit at some point. 

My priority now is to plan a life that takes into account my severe ME, which means making my life as easy and comfortable as possible. So, in April 2019 I put my flat on the market. With the sale of my flat I would be able to purchase a more suitable home in Peebles. My current temporary accommodation in Peebles has been fine for the short term (the last four years), but I need a more suitable (accessible) home in which I can live for as long as I have severe ME, which could be the rest of my life. 

I accepted an offer on my flat in May, and in the same week I found the (almost) perfect house in Peebles, a detached bungalow close to the town centre. I made an offer and it was accepted. I took possession of the new house in July. 

The new house, as lovely as it is/will be, isn’t suitable (for me) in its current state, it needs some building work to make it accessible. Once the work is complete it should allow me to live in as much comfort as is possible with severe ME, which has me almost completely house bound and mainly bed/sofa bound.

I take my duty to pay council tax seriously and I was diligent in keeping Scottish Borders Council (SBC) up to date with my housing situation, in terms of council tax. I first contacted SBC on the same day that my offer on the house was accepted to confirm which reductions I would be eligible for as someone who is both disabled and living on a low income. I then contacted SBC again the day before I took possession of the house, to inform them that as of the following day, I would be the owner.

I thought that because the house would be unoccupied and unfurnished while the building work was going on, I would be exempt (as is usually the case) and would not have to pay any council tax for up to six months, or until I moved in, if that happened sooner. I was wrong…

Email from Customer Advice and Support Services at Scottish Borders Council

“I have looked at the Council Tax account for this property and have to advise that under Council Tax legislation unoccupied and unfurnished dwellings are exempt for a maximum period of six months from the date the dwelling was last occupied. As the property has not been occupied since 24/03/2015 which is more than six months ago, you are not entitled to any exemption. However, as the property has been empty for more than twelve months, it has become liable for a Long Term Empty Levy of 200%. This levy will be applied from the date you purchased the property until the date the property is occupied.”

So, not only was I not eligible for exemption during this period, I was going to have to pay double the council tax. This was because the house had been empty for more than twelve months before I bought it (!!!), something that I was unaware of until after I took possession of the house. Apparently it didn’t matter that I had only just bought the house, because it had been empty since March 2015 (said SBC, more recently they have told me it had only been empty since March 2018), as the new owner, I would be financially penalised. I find it absolutely ludicrous that the occupation history of this house is somehow my responsibility. You would think they would reset the clock, so to speak, when the property changes ownership, but no.

I didn’t know the previous owner, but from what I gather, they went into care and then passed away, which is why the property was left unoccupied. Again, this is something I didn’t know until after I took possession of the house. I was in complete shock. I just could not understand why I was being held financially responsible for the (unintentional) actions of the previous owner.

I have been informed that this legislation exists to prevent people from purchasing property as an investment with the intent to leave the property empty, which isn’t ideal during the current housing crisis. I can understand this, it makes sense, but that is not what I have done. I in fact have taken an unoccupied property and am making it occupied. I am helping SBC to solve the problem that they are using to justify the 200% ‘Long Term Empty Levy’. I was also informed at the time that they have discretionary powers over the legislation, which led me to believe that I would be able to reason with them, have them see sense and not apply to levy to me. Later they denied this, I was told that they didn’t actually have discretionary powers over the legislation and they were simply acting withing the law. I should also note that this is a Scottish legislation, so I can’t even blame the Tories for this utterly ridiculous law.

SBC did inform me however that I could apply for a ‘structural repair discount’. If they deemed the work that I was having done to the house to be “major repair/structural”, I could apply for a 50% discount, taking the 200% back down to the normal rate. I applied for this discount and it was granted, but honestly, even this is unacceptable to me. It is not my fault that the house was unoccupied for so long. I am innocent. I have not left this or any other property unoccupied for over six months. I therefore believe that I should be eligible for total exemption for up to six months, as would be the case if the property had been occupied before I bought it. I have done nothing at all to merit this punishment.

What makes this all the more frustrating is that when I do move in, I will be eligible for various council tax discounts – banding reduction (I am disabled), single occupancy (I live alone) and/or council tax benefit (I am on a low income – ESA and PIP). This means that when I move in, I won’t be required to pay the full rate. But, while I’m in the process of making the house accessible, I am only eligible for the 200% to 100% discount, which hardly feels like a discount. It’s so unbelievably unjust.

Leaving aside the fact that I wouldn’t have needed to buy this house in the first place if I didn’t have severe ME… I am only having this work done so that I can live in the house. The house as it is, is not accessible for me. If for any reason this work could not have been done (I consulted with the builder before making my offer on the house) I would not have bought the house. If I was not disabled I would not need this work done. If I was not disabled I would have been able to move straight in. But, because I am disabled, and because I need an accessible home, the consequence is that for a few months, I have to pay a great deal more council tax that I would have otherwise. To me, this feels like a disability tax, a financial penalty for having access needs, a punishment for being a wheelchair user.

After I was granted the 50% discount, in an effort to challenge SBC in regards to the levy I contacted my local Councillor, my MP and my MSP. Everyone is in agreement that while the legislation has its place, applying this levy to me is unfair and completely lacking in common sense. Someone in my situation, who is renovating a property to make it accessible should not be financially penalised in this way.

Support from my Councillor, MP and MSP. 

“It is supposed to help stop the empty homes crisis but in reality its people like you that are getting unfairly penalised. I get why they are trying to do this but in some cases (like yours) common sense need to be added. Its not your fault that someone else left the property empty for years, therefore you should not be penalised unfairly.”

“You are correct in stating that the point of the council tax levy is stop houses lying empty, but that is not what you are doing.”

“This situation is awful, and I have absolute agreement with you that someone in your situation should not be required to pay council tax on a property that you are renovating to equip it for your needs.”

“You have your MP, your MSP and the Council Leader on side.”

Despite their support though, unfortunately everyone’s hands are tied.

“I am so sorry… legally the councils hands are tied. We have looked at your case and tried to find as many discounts as we can possibly find to apply to you bill. I realise that this is not good news and if we could do more we absolutely would.”

Legally, the Council cannot apply any more discounts or reductions to my council tax (so they say), so I have no choice but to pay, which I have done, grudgingly.

My Councillor however is in complete agreement with me that this legislation must be challenged.  She believes that my case should be highlighted to the Scottish Government and she agrees with me that the law should change. So I have given permission for the details of my case to be forwarded to the Scottish Minister who has responsibility in this area. I’m not sure what will happen next, I’m considering a petition, and I’m not against going to the press. If we are successful, and we get this law amended, I will attempt to be refunded for the amount of council tax that I will have paid during this period.

As well as financially hurting me, this situation has caused me a great deal of emotional stress and anxiety. I have found dealing with SBC to be incredibly unpleasant. The flippant nature of some of their communication has been upsetting, not to mention the amount contradictory and incorrect information they have given me. They have left me with zero confidence that they know what they’re doing, or that they care about the well being of their citizens/constituents (or whatever we are). I am dreading having to deal with them again when it’s time to apply for the Council Tax reductions when I move in.

SBC have also forced me to give up some of the accessible features of my new home. I hadn’t bargained on having to pay Council Tax during this period, but now that I have to, I’ve had to use money that I had saved up and earmarked for other things, such as an accessible walk-in bath.

Local authorities have a responsibility to protect their vulnerable citizens, and as a disabled adult, as much as I dislike this, I am considered to be ‘vulnerable’. The Adult Support and Protection (Scotland) Act 2007 places a duty on the Council to protect vulnerable adults from harm. Harm can include: physical harm, psychological harm, financial harm, sexual harm and neglect. I don’t believe that SBC have protected me from harm. I actually feel that the harm I have been subjected to, both financial and psychological, has been caused by SBC. But also, because stress causes my physical ME symptoms to worsen, and this situation has certainly been extremely stressful, I could argue that I have been subjected to physical harm as well. I’m still trying to figure out exactly how I feel about this, and how I plan to proceed, if I have the energy to make an official complaint, or to take it to the Local Government and Social Care Ombudsman. Or it might be enough for me to know that this blog post is out there for the world to read. 

In regards to my campaign to have the law amended, I will provide updates as and when they happen, if they happen. Rather than publish a new post with each update though, I think I’ll add updates at the end of this post, so keep an eye out if you would like to know what’s going on. I will also mention any updates on this matter in future unrelated posts, with a link that will take you back here.

Wish me luck!

 

UPDATE: 22nd September 2019

Both my MP and Councillor (who is also the Council Leader) wrote to the Scottish Government Housing Minister, Kevin Stewart MSP and brought up the issues I have in regards to this legislation.

These are the changes I want them to make…

  1. I believe that a clause needs to be added to the legislation that allows local authorities to be flexible when implementing the levy on people. They should consider each case on an individual basis, and in some cases, like mine, they should apply common sense and not apply the levy.
  2. I also believe that the ‘empty property’ clock should be reset when the property changes ownership. It astounds me that no one seemed to consider this, or if they did, they saw fit to discount it. I wouldn’t have to take responsibility if the previous owner failed to pay a phone bill, for example, so why am I being held responsible for the previous owner leaving their home unoccupied? It makes no sense whatsoever, and I’m amazed that these issues weren’t flagged up at SBC when they first implemented the legislation.

SBC are adamant that they are simply following the law, that they do not have the power to be flexible, they are placing the ‘blame’ entirely on the Scottish Government, but the reply that my MP received from Mr Stewart tells a different story…

“Your letter expresses concern about the application of the empty homes levy Scottish Borders Council and a lack of flexibility afforded by the legislation. The levy was introduced with the intention it would act as an incentive to encourage private sector home owners to bring the property back into use, rather than simply a revenue raising tool. I can advise that The Council Tax (Variation Unoccupied Dwellings) (Scotland) Regulations 2013 provides local authorities with the power to apply a surcharge on long-term empty homes and determine the circumstances in which the increase applies. It allows them, should they choose to do so, to take the individual circumstances of owners into account when applying the increase. We updated and refreshed our guidance to clarify this flexibility and this was circulated to all local authorities in April 2018. These powers are discretionary and rightly lie with councils, however, I have been encouraging those with blanket policies to look at their peers who have chosen to adopt a more flexible approach.”

So, while SBC and the Council Leader are telling me that SBC have no flexibility in applying the levy, the Housing Minister is denying this. He actually states outright in his letter that local authorities do have discretionary powers and they are allowed to take individual circumstances into account. He appears to be placing the ‘blame’ back onto SBC.

Mr Stewart also stated in his letter that normally, the power to make these decisions would lie with a dedicated Empty Homes Officer, which SBC do not have. My MP has raised this issue with the Council Leader to ask if SBC have any plans to hire somebody to fill this role.

I wonder, if SBC had filled this role, maybe that is the person who would have had the power to deal with these cases on a discretionary basis. Maybe that is the person who could have applied common sense to my case, and not financially penalise me (for the previous owner leaving their property unoccupied).

SBC raised £611,881 in 2017 thanks to this legislation, so you’d think they could afford to employ someone to fill this role.

In lieu of an Empty Homes Officer at SBC Mr Stewart recommended that I contact the Scottish Empty Homes Advice Service, he said they could perhaps liaise with SBC to try to come to an agreement about the level of Council Tax due.

Mr Stewart ended his letter with this…

“I note your comments about resetting the clock when empty homes are taken on by new owners. This is something I will consider as part of our review.”

For some reason I’m not feeling particularly hopeful that he will follow through on this.

Unfortunately my MP cannot do anymore to help me because this specific issue is devolved to the Scottish Parliament. However, he has been in contact with Michelle Ballantyne MSP  (my MSP – I thought Christine Grahame was my MSP but apparently I have more than one?!?) and someone from her office will be in contact with me to discuss how she can perhaps move my case forward. She will be able to ask questions within the Scottish Parliament directly to the Housing Minister, which is something that my MP cannot do.

So, that’s where I’m at. My MP and Councillor have hit dead ends, but with the information from the Housing Minister’s letter, I really hope my MSP can move this forward. I’ll be back with another update as and/or when there’s anything new to report.

UPDATE: 4th February 2020

An update to tell you that I have no update. I was in contact with staff from Michelle Ballantyne’s and Christine Grahame’s office for a while, but communication has now dried up. So, that’s that, I guess. None of the people who have the power to intervene and challenge seem to be willing to do so.

 

NEWS

 

ME Science & Research

Health Rising. Dr. Klimas’s Big Win and What it Means for Chronic Fatigue Syndrome (ME/CFS).

https://www.healthrising.org/blog/2019/09/01/klimas-chronic-fatigue-syndrome-guld-war-bacopa-etanercept/

Health Rising. Cortene to Move Forward on New Drug for Chronic Fatigue Syndrome (ME/CFS).

https://www.healthrising.org/blog/2019/08/29/cortene-to-move-forward-on-new-drug-for-chronic-fatigue-syndrome-me-cfs/

Simmaron Research. ME/CFS Seahorse Energy Production Study Shows Surprises.

http://simmaronresearch.com/2019/08/me-cfs-seahorse-energy-production-study-shows-surprises/

Simmaron Research. The First ME/CFS Fecal Transplant Study Suggests the Treatment Holds Promise.

http://simmaronresearch.com/2019/08/fecal-transplant-chronic-fatigue-study-promise/

Emerge Australia. Australian ME/CFS biobank awarded to research team which includes Emerge Australia!

https://emerge.org.au/australian-mecfs-biobank-awarded-to-research-team-which-includes-emerge-australia/

Health Rising. Is the Brain Causing the Small Fiber Neuropathy in Fibromyalgia (and ME/CFS?).

https://www.healthrising.org/blog/2019/08/12/brain-small-fiber-neuropathy-fibromyalgia-chronic-fatigue/

 

ME In The News

MEAction. MEAction responds to attacks on ME community in the Guardian and Psychology today.

https://www.meaction.net/2019/08/01/meaction-responds-to-attacks-on-me-community-in-the-guardian-and-psychology-today/

 

General Disability & Chronic Illness

The Guardian. My disabilities are invisible. I shouldn’t have to prove them to strangers.

https://www.theguardian.com/commentisfree/2019/aug/09/disabilities-invisible-prove-stangers-disabled-services-illnesses

Brain Lesion & Me Blog. Chronic Illness and its graveyard of buried hopes.

https://www.brainlesionandme.com/chronic-illness-and-its-graveyard-of-buried-hopes/

The Blast. Netflix Hit With Defamation Lawsuit by the Subjects of the Docuseries ‘Afflicted’.

https://theblast.com/c/netflix-afflicted-lawsuit

 

 

 

Post Thirty Two. Some Things I’d Like My Visitors To Be Mindful Of.

This is a difficult post for me to publish. I find it hard to assert myself and let people know what I need, and that’s what I’m doing in this post. What I’m sharing here may be hard for non-ME people to understand, and if you’re someone who likes to visit me, it may be a bit of a nuisance to put into practice.

I have no reason to try and put off anyone from visiting me. I want people to visit me, the isolation I live in is a major factor in the decline of my mental health. But there are certain things that I need from my visitors, not because I’m trying to be awkward, but because it otherwise affects my health, sometimes severely. I worry that I may be thought of as being overly pernickety, and if it means I have even fewer visitors, then so be it. My priority is my health. I never feel well, but I want to feel as well as I possibly can, and nothing is more important to me than trying to keep my ME from becoming any more severe, that’s if I even have any control over it. I tend to think that maybe, if I can do all I can to try and minimise my day-to-day suffering, maybe it will affect the longevity and severity of my illness.

Socialising, interacting and communicating with people uses a tremendous amount of energy. This is something I had no concept of until I had ME, and I’m not sure that I can expect non-ME people to be able to identify with this at all. I can cope with visitors every now and then, but not often. Apart from my mum, on average I maybe have an additional visitor every three or four weeks or so, although it’s not unusual for me to go much longer without seeing anyone who isn’t my mum, or a doctor or my counsellor etc.  When I have a visitor, depending on how I feel on the day, I will start to flag and feel my symptoms worsening within an hour, usually after about fifteen minutes or so. But because I crave human company so badly, and I have so little of it, I do sometimes push myself and exceed my limit, knowing I will suffer for it.

It really takes it out of me when I socialise with one person, socialising with two people is even harder, and socialising with three or more people generally results in a bit of a disaster for me. It took me a while to understand what it is that causes my symptoms to worsen when/after I spend time interacting with one person, but I do now, and of course it stands to reason that it will be so much worse with more people. Just being in the presence of another person is harder on me/my energy levels than being alone, even if all we’re doing is sitting together in silence. ME has made me hypersensitive to stimuli outside of my body, including heat, noise, light, scent and movement. So obviously when there are more people, there will be more noise, more movement, etc. This results in a sensory overload for me. It’s additional stimuli for my already overtaxed body to take in. It’s like an assault on my senses.

There are no guarantees, ME does its own thing and I do not want to create the impression that people with ME can control the progression of their illness. It seems clear to me that there are different subsets within the ME diagnosis, and there does seem to be a progressive/degenerative version, which I suspect I have, given my gradual deterioration since the onset. ME is a neurological illness, and it cannot be cured or treated with lifestyle/behavioural changes. However, there are some things that I can do to manage my symptoms and attempt to mitigate the payback, but it’s not fool proof and it frequently doesn’t work (the payback, or crash, officially known as Post-Exertional Neuroimmune Exhaustion, is the worsening of my symptoms after I have overexerted myself).

So, when I have someone visit me, I will do the following – I will rest and do as little as possible the day before their visit and I will have nothing but rest planned for the following day. I will lie down and rest with my eyes closed, in a dark cool room, with my noise cancelling headphones on, immediately before (at least thirty minutes) and after (as long as it takes) their visit, never with the TV on, but sometimes with relaxing music or in silence. I will control the temperature and the light, as best I can. I will ask them to bring the coffee, so I am spared the effort/exertion of making it myself. I will make sure I have no other visitors or medical outings in the days before and after their visit. My visitors may think that for me, their visit begins when they arrive, and ends when they leave. Wrong. The preparation for, and the effects of a visit, goes far beyond that one day.

When I have someone visit me, I have to put so much thought into it, it pretty much has to be planned like a military operation. Every single thing I do has to be risk assessed. I always have to think about how one activity will affect another. My life takes far more careful planning now than it did pre-ME, and it’s what I have to do in order to manage my illness. I cannot just let life happen. My experience so far has taught me that I need structure and routine. I need to know as much as possible, what is going to happen and when. I need my week(s) ahead to be mapped out. Even pre-ME I found that having order in my life was soothing, but since having ME, it’s also become essential for my well-being. Not everyone will be able to identify with this. There are people who do not need or want to live like this, and that’s fine. It’s also fine that I do need and want to live like this. There is no right or wrong way. Take going on holiday for example. I like to get to the airport with as much time to spare as possible, I take the recommended arrival time seriously and if I’m running late I feel anxious and I don’t enjoy it. Whereas some people don’t mind arriving at the airport with little time to spare, rushing through security and arriving at the gate when the plane is already boarding. Neither of these approaches to life are right or wrong, one isn’t better than the other, they’re just different.

So, I’m finally getting to the point of this post. While I do what I can to feel as well as possible and reduce payback after I have someone visit me, there are also things that my visitors can do. I’ve never written about this before because I don’t like to put people out. I would rather be inconvenienced myself, than cause inconvenience for someone else. But now there’s more at stake, it’s not just inconvenience, it’s my health, my symptoms, it’s how my body feels, it’s the difference between a better or a worse day/week for me, and it’s potentially the longevity and severity of my illness. It seems ridiculous that I feel bad for asking what I’m about to ask. I fear that I’ll be seen as being unnecessarily difficult, or precious, and will alienate people as a result. I also worry that people might feel nervous about visiting me for fear of ‘doing something wrong’. But, these are things that would genuinely help me, and I’d like to think that the people who visit me like me and care about me enough that they will be happy to keep them in mind.

Here we go.

When I have a visitor, I need to know in advance what time they plan to arrive, and if it changes, I need to know as soon as possible.

When my visitor hasn’t committed to a time in advance and I’ve only been given a vague window of time for their arrival, the waiting and the anticipation of their arrival uses a great deal of energy, in the days running up to their visit, and on the day itself. More use of energy of course means more symptoms for me.

I have on a few occasions, after waiting for my visitor but not knowing when they’ll arrive, ended up feeling so unwell that by the time they get here, I’ve had to send them away. So we both miss out on seeing each other. It’s maybe an inconvenience for them, but they can at least get on with their day, I however will be paying for the additional (and unnecessary) use of my energy for the rest of the day, and possibly the next day, and the next… The only way I have found to prevent this from happening is to arrange a time as far in advance as possible, preferably at the point of the arrangement being made. It may mean that I see fewer people, and less often, as it’s not necessarily compatible with the lives of the people I know, but I cannot do spontaneity, vagueness or uncertainty.

Here are a couple of scenarios:

  1. A visitor tells me they will be in town on Friday or Saturday the following week, they’d like to visit me and they’ll let me know which day it’ll be on Thursday, and then confirm the time on the day.
  2. A visitor is coming by bus, the bus is due to arrive at 3.30pm and they’ll go to Costa on the way to mine, so they aren’t sure exactly what time they’ll arrive.

Scenario 1 is what I cannot do. On this occasion I will have to tell the visitor that this arrangement doesn’t work for me. If they’re unable to arrange the day and time now, then let’s wait until we find a date that they can.

Scenario 2 is fine. I’m not unreasonable. I know that no one can predict to the minute what time the bus will actually arrive, or how long the queue in Costa will be, or how many people ahead of them in the queue will order those iced blended drinks that take ages to make. In this scenario I can make an educated guess. I know what time their bus was scheduled to arrive, and I know roughly how long it can take when Costa is busy.

It’s probably not surprising to hear that I also cannot do spontaneous visits. I cannot cope with ‘pop-ins’, when people just turn up and knock on my door. I actually don’t answer my door if I’m not expecting anyone. I won’t use precious energy for a Jehovah’s Witness or a courier who’s at the wrong house. There are occasions when I’ve made an exception and accepted a visitor on short notice, like a friend who texts me to say they’re nearby and do I fancy a visit. Of course it very much depends on how I’m feeling at the time, and while it’s rare, it’s not completely out of the question for me to then invite them over for a short visit. So if in doubt, please do still ask, but don’t be surprised if I can’t manage it, and please don’t be offended. When it’s me who reaches out to someone with little notice to ask if they’re free that day/evening , it’s usually when I’m having to prioritise my mental health over my ME, and in the need of company.

While I was thinking about the the whole anticipation/waiting thing, and not quite understanding it, I reached out to one of the ME support groups I’m in and I asked if anyone else experiences this. Of the thirty four replies I got, every single one of them told me that they experience this too. ME is one odd illness.

I need my visitors to be on time, not too early and not too late.

I have to rest immediately before I have a visitor, and if the visitor arrives earlier than planned, my rest will be interrupted and as a result I will manage less time with my visitor and the crash will be more severe. If they are late, well this is similar to the above scenario, the waiting and anticipation will use so much more energy, which will exacerbate my symptoms and I may end up feeling so unwell by the time they arrive that I’ll have to send them away, and I don’t like doing that.

I’m not going to be completely militant about this, it’s not a case of needing my visitor to arrive at 16:00 on the dot or else they’ll be sent away. I appreciate that interruptions do happen. It’s not unheard of to be stuck behind a tractor when driving or on the bus to Peebles. Being in the countryside means cows can escape their field and wander around on the road very slowly and without any urgency to go back to their field. Their phone could ring as they’re leaving the house to come and visit me and they get held up. I know this. I’m really just asking that if anything does happen that could make my visitor late, I’d like them to let me know as soon as they realise, so I can then make an informed decision about whether it would be best to cancel/postpone the visit or not, and I’m not left wondering.

I need my visitors to move carefully and slowly, with no sudden movements.

I’ve mentioned before that I’m hypersensitive to movement, not all the time though, it varies. This sensitivity to movement is why, if a visitor offers to wash my dishes, I might turn down their offer. It’s not out of pride, or not wanting to inconvenience them, it’s because in that moment, I cannot cope with the movement (or noise – see below) within my vicinity.

This also affects my use of the internet. If it’s a worse day, I cannot bear when I’m scrolling down Facebook, or whatever, and a video automatically starts playing. Both the movement, flashing images and/or the noise will trigger vertigo-like symptoms. I recently wanted to watch something on BBC iPlayer, but it had a woman using sign language in the corner of the screen, with no option to watch without it. While it’s very much a good thing that this is available, I couldn’t cope with the movement in the corner of the screen as I tried to concentrate on what I was watching. I thought it was interesting though, that by making something more accessible for one set of people, it can make it inaccessible for others.

Now of course I don’t expect people to stay perfectly still, they don’t have to be statues. I would just like my visitors to be mindful of this and be aware of the effects of wild hand gestures and sudden unexpected movements on my already struggling brain. If it’s the result of a huge sneeze, or anything they have no control over, then of course that’s ok.

I need my visitors to speak at a low volume and not too fast, and to remove their shoes and coats downstairs and leave any noisy plastic bags downstairs.

I am hypersensitive to noise. I have always been sensitive to noise, even pre-ME, my hearing is annoyingly good and unwanted noise (from neighbours for example) makes me very anxious and puts me on edge, it still does, but since having ME, noise actually causes me pain. This is why I wear my noise cancelling headphones all day, apart from when I’m sleeping, when I use ear plugs.

This is one of the trickier ones for me to navigate, because noise is everywhere. My brain cannot cope with noise coming from more than once source at a time. When I’m alone, my headphones help with this, as I can listen to music or watch TV through them, while blocking out (most of) the other sounds around me. But I have to take my headphones off when I have visitors, so I can hear them properly, but it also means I can hear all the other noises – my fridge humming, the radiator, people on the close outside my house, traffic in the distance, birds singing, dogs barking, etc. It’s really difficult to explain how a noise/sesnory overload like this makes me feel, but it’s excruciating. I can feel my body and my mind deteriorating, it’s like – Harry Potter spoiler ahead – you know how when Voldemort dies in the film and he kind of disintegrates, I feel like that is what’s happening inside my body and my mind. It affects my ability to absorb and understand what the other person is saying to me, almost as though they’re speaking in a foreign language that I don’t understand, but they use English for every fourth word. I struggle to process their words and apply any meaning to them. I lose my ability to think and formulate a response. This is basically what brain fog is. Eventually it will also cause me to get a headache, I’ll feel faint (in that room spinning way when drunk), then my muscles and my limbs (especially my upper arms) will begin to ache, and quite randomly my shoulders will begin to ache too.

This is how my visitors can help me with this. If my visitor has a noisy coat (like a raincoat that rustles), I’d like them to remove it downstairs by the front door or in my bedroom, before coming upstairs to the living room. If they have brought us a Costa coffee and a snack for themselves, I’d like them to remove their snack from the paper bag or plastic wrapping, and use a plate, rather than eat it directly out of the bag/wrapper, which will rustle noisily with every movement (these rustley noises are the most painful for me). If they want to show me a video of something online, I’d like them to send me a link, so I can watch it in own time, with my headphones on, rather than play it then and there. I would like visitors to speak as softly as possible and to not speak too quickly, and to please not be offended if I ask them to speak at a lower volume or to slow down.

Again, I don’t expect visitors to be mute. I would just hope they could be mindful of this, and how it affects me, especially when there are more than two of us there.

When I have more than once visitor at a time, I need them to speak one at a time.

This is pretty much covered above. It’s difficult and draining enough for me to concentrate on what one person is saying, it’s so much more difficult when there’s a group of people, and more than one person talking at the same time. When this happens, as well as the symptoms described above, I simply zone out of the conversation altogether, and I may as well not be there.

Because it is a lot harder for me to socialise in groups, I don’t do it often, but sometimes it’s unavoidable, and sometimes I just want to, because it’s fun, and I still want to do fun things, but fun things of course use energy too.

I need my visitors to avoid using their phones in front of me.

As you’ll have gathered by now, I need to keep any stimuli in my vicinity to a minimum. This includes electronic gadgets, mine too. I try to remember to turn my phone over when I have company so I won’t be distracted at the arrival of a reminder or a text message. This goes for my visitors phones too. Any noise, light or moving images that suddenly appear is more for my brain to take in, which uses more energy, and therefore I fade faster. I also find that it divides my concentration, which makes it harder for me to absorb and process information. I find it harder to keep my concentration on the person, when their concentration is on their phone. I’d rather be able to focus my attention entirely on them, when my attention is split, the brain fog and dizziness set in sooner.

I need my visitors to be scent/fragrance free.

This is a newer one for me, and it’s extremely difficult to put into practice. I am now unfortunately very sensitive to scents/fragrances. It’s incredibly annoying for me and for my visitors.

The person I see the most of is my mum. She has had to replace all her soap with fragrance free versions and she can no longer wear perfume. She can’t even wear it when she’s not with me, as it will transfer onto her clothes, and if she re-wears something, forgetting that it’s been in contact with perfume, I will then suffer for it. It makes me feel lightheaded and causes pain between my eyes, my head and the back of my throat in a ‘if this gets worse I’m going to struggle to breath’ kind of way.

I have also replaced my soaps and my washing up liquid with fragrance free varieties. I’m still looking for household cleaning products, I’m sorted with the laundry though as I already use an Ecoegg. I’m keeping hold of my perfumes in the hope I will be able to use them again one day.

This is a really hard one, because it feels completely unreasonable for me to ask people to ensure they are fragrance free when they visit me. I don’t feel I can ask people to change their shampoo, conditioner, soap, laundry detergent etc. I think all I can ask is that my visitors try to keep it to keep it to a minimum, like, not wear perfume if they are seeing me that day, and not wash their hair the morning they are visiting me, etc. They should also be prepared that if they are scenty, I will have to open the window, however cold it is, and I might also have to ask them to leave, if/when it becomes too much for me.

I can’t have visitors who are feeling unwell themselves and are potentially contagious.

ME, as well as involving dysregulation of the central nervous system, also involves dysregulation of the immune system. This means that my immune system is compromised, and I am therefore more susceptible to catching colds, flus, infections etc.

So far I’ve been pretty lucky, I haven’t had that many illnesses on top of my ME, unless I have but I haven’t noticed, which is actually fairly likely. I could have a worse few days or weeks, and not realise it’s because I have the flu or a cold. This happened in 2016, and it turned out I had Tonsillitis, but I hadn’t realised, and I ended up needing my tonsils removed. However, even though I have been fairly lucky up until now, that doesn’t mean I am prepared to take risks.

When I catch a bug it will take me longer to recover, it can cause complications involving my ME, it could also trigger a relapse and it has the potential to push my already severe ME into very severe ME. It is therefore very important that my visitors are feeling well themselves. I cannot have someone visit me if they have some kind of bug, or even if they have that feeling that a cold, or whatever, is on the way.

It’s also important that my visitors practice good personal hygiene, especially if they’ve travelled by public transport or have been handling money, or anything that’s particularly germy. I’m not going to police this, I think I can trust my visitors to know when washing their hands will be necessary, and my bathroom is handily right by my front door, for those who want to wash their hands upon arrival. Also, and this is basic common sense and good manners, I would hope that any visitor I have will always cover their mouth when they sneeze, cough or yawn.

If you’re wondering, I am eligible for the free flu vaccination (the flu vaccine is offered free on the NHS to people in certain at-risk groups, mainly people who are at greater risk of developing serious complications if they catch flu) but I have decided against it. I am by no means an anti-vaxxer, I don’t get the flu vaccine because it’s quite common for people with ME to suffer a relapse after having the vaccination. According to the ME Association… “This could be because research into immune system dysfunction in ME/CFS has found evidence of what is called immune system activation – which equates to a persisting and overactive immune response to a triggering infection. Vaccines are designed to mimic the infection they are supposed to protect against and so they also trigger an immune system response.”. It has been advised that an adverse reaction to the flu vaccine is more likely to occur in people with ME who have on going flu-like/infection symptoms, such as swollen glands, sore throats and problems with temperature control etc, which I do, these are perfectly normal everyday symptoms for me. So I personally have chosen not to be vaccinated.

Shoes off please.

This doesn’t directly affect my symptoms, but it seems a good time to mention it. I prefer people to remove their shoes by the front door before coming upstairs to my living room, or my bedroom etc. This is because, any dirt that gets trailed in, after their visit, I won’t be able to clean it up. Vacuuming is out of the question for me as it uses so much energy, I don’t have the strength to hold the vacuum cleaner and I can’t stand for long enough. But if anyone has a genuine need to keep their shoes on, they won’t be banished, I’ll just ask them to give their feet an extra good scrub on the doormat.

The Science!

Since I’ve been writing this post I’ve been doing some research to try and find some articles to share that may help explain these particular symptoms. I found two, one is about the dysfunctional autonomic nervous system in people with ME, and the other one is about a neurological process called sensory gating, which I had never heard of before. I have shared some excerpts from each article below, to read them in full, just click on the title of the article.

This document created by The ME Association explains why stimuli outside the body, such as noise, heat or emotional stress, causes the reaction that it does.

The Dysfunctional Autonomic Nervous System in ME/CFS – The ME Association

Altered autonomic nervous system (ANS) functioning has been frequently reported in patients with ME.

The nervous system spans the whole body, connecting all our organs and tissues with each other and the brain, sending messages between them. It is split into two systems: The central nervous system and the peripheral nervous system. The autonomic nervous system (ANS) is the involuntary branch of the peripheral nervous system. Involuntary means that it controls most of our unconscious actions, that, most of the time, we aren’t aware are happening; such as breathing, digestion and the beating of our heart, so it’s like an auto-pilot system.

The ANS has influence over muscles and glands throughout the body and controls a whole range of things, including heart rate, breathing, salivation, digestion, perspiration (sweating) and urination. The ANS is further subdivided into two opposing sections; the sympathetic and the parasympathetic nervous systems. These two divisions have a sort of yin-yang relationship; they both act on the same parts of the body but produce completely opposite effects.

The sympathetic nervous system (SNS) likes to speed everything up (get you ‘hyped’) and is best known for stimulating the ‘flight or fight’ response, having effects such as increased heart rate, increased breathing, dilated pupils, slowed digestion, and increasing blood-flow to the muscles in preparation for movement. On the other hand, the parasympathetic nervous system (PNS) likes to calm you down (relax you)
and is known for the ‘rest and digest’ response, having opposite effects to the SNS, such as slowing your breathing, reducing your heart rate, constricting pupils, and encouraging digestion.

When in balance, these two systems work together well in the body. However, they are selfish systems as when one is working, the other one cannot; one must be  switched off’ in order for the other to work – they cannot both work at the same time. Understandably, the sympathetic nervous system is very energy demanding, whilst the parasympathetic nervous system, is energy conserving.

ME/CFS patients tend to have reduced parasympathetic activity, and increased sympathetic activity, known as “sympathetic nervous system predominance”. This same ANS dysfunction is seen in healthy people after engaging in acutely fatiguing tasks, and the lack of parasympathetic activity appears to correlate to feelings of fatigue. The difference is that in CFS, the ANS dysfunction happens after much lower levels of stress or activity.

In simple terms, people with ME/CFS are hyper-sensitive to anything from infections and pain within the body to stimuli outside the body, such as noise, heat or emotional stress. The body is stuck in a high-alert – ‘we need to defend ourselves from all threats’ – mode (otherwise known as the ‘fight or flight response’, stemming from the sympathetic nervous system).

Naturally, being on a constant state of high alert, quickly drains the body of energy and can result in other problems, such as gastrological symptoms, as digestion is not a priority in this state. The sympathetic system puts many organs and processes into overdrive and deprives other areas of blood and oxygen, so this is not an ideal state to spend most of your time in!

This is a guest post from the Health Rising website in which the author sets out a hypothesis for a single neuroinflammatory process as the core pathophysiology underpinning ME.

‘Sensory Gating’ – A Key to Chronic Fatigue Syndrome (ME/CFS)? – Health Rising

First a short questionnaire….. Would you agree or disagree with below statements?

  • My hearing is so sensitive that ordinary sounds become uncomfortable
  • There have been times when it seems that sounds and sights are coming in too fast
  • It’s not bad when just one person is speaking but if others join in, then I can’t pick it up at all. I just can’t get into tune with that conversation
  • There are days when indoor lights seem so bright that they bother my eyes.
  • I have more trouble concentrating than others seem to have
  • I seem to hear the smallest details of sound
  • When I’m tired sounds seem amplified

These statements are taken from a questionnaire developed to assess problems with something called ‘sensory gating’. If you answered yes to several of these or other similar questions you could have problems with sensory gating.

“Sensory gating describes neurological processes of filtering out redundant or unnecessary stimuli in the brain from all possible environmental stimuli. Also referred to as filtering, or sensorimotor gating, sensory gating prevents an overload of irrelevant information in the higher cortical centres of the brain” Wikipedia

Three common phenomena that may be disturbed if there is a problem with sensory gating are ‘the Cocktail Party Syndrome’, the ‘Seat of the Pants’ phenomenon and the ‘Startle Reflex.’

In the ‘cocktail party syndrome’ it’s difficult to carry on a conversation with in a room because we have difficulty filtering out the noise of others. In the ‘seat of the pants’ phenomenon we have difficulty attending to the outside world because nerve impulses signalling the body is in contact with a surface don’t get filtered out as they should.

If we hear a loud bang we jump but if the noise is repeated several times and nothing untoward happens then eventually we learn to ignore it through a process of habituation and it becomes just so much more background noise. However, if our brains keep attending to the jackhammer or the door shutting or banging or whatever, again we don’t have much room left to attend to what’s in from of us.

It’s easy to imagine the ‘information overload’ if all these signals and others, reached the conscious mind on an on-going basis.

An important point to note though is that these mechanisms operate at the pre-conscious level. For example a sudden loud noise will elicit a startle response regardless of whether or not we had previously identified the noise as dangerous or harmless. It also appears that the strength of the startle response varies between individuals.

It may be hypothesised that ME/CFS patients, if tested, would show a deficit in neurological sensory gating and that this gating deficit may give an insight into many of our common and not so common symptoms.

So, if I’m right, when I am overstimulated due to my hypersensitivity, my body gets stuck in this state of ‘high alert’ or ‘fight or flight’. Being in this state drains my body of energy and puts my organs and processes into overdrive while depriving other areas of blood and oxygen. I feel worse as a result. It doesn’t explain why I feel worse when I’m waiting for someone, but it’s maybe something to do with the feeling of anticipation, which could maybe create this state of high alert. But I’m no scientist, I could be wrong.

Almost Finished

I hope that what I have shared in this post will prove helpful for those who visit me. It’s basically just me asking my visitors to be mindful of the things I need to remain as well as possible. Of course ‘well’ is a relative term here, I’m never well, but you know what I mean.

I’m so grateful for the people who do visit me. I enjoy their visits, I’m unable to go to them, so when they come to me, they provide me with little pockets of real life. When I’m with non-ME people I like to hear about their lives. I know some people with ME find it really difficult to hear about what their healthy friends and family are doing, and I get it, I feel that too, but more often than not, I find these visits make me feel more connected to the outside world.

I also want to it to be known that it’s not always easy being a friend or family member to someone with severe ME. It’s especially hard on the immediate carer(s), but it’s also hard on everyone else in their life. My hope is that, by explaining why I have to do things a certain way, it will help my visitors to understand that if I ever have to cancel a visit, or turn down an offer of a visit that was made on short notice, or cut a visit short, it’s never personal. ME dictates everything I do, there’s no ‘fighting’ this illness. My best hope of feeling better is to give in to my illness. This doesn’t mean giving up, it means listening to my body. It means resting when my body needs to rest, to have silence when my body needs silence, etc etc. I hope that by aiding my visitors in their understanding, when I do have to cancel a visit, or whatever, they will be able to deal with it graciously, because they’ll know that I’m not saying “I don’t want to see you”. I’m simply doing what my body needs me to do, to allow it to feel as well as possible and hopefully one day regain some function and improve my quality of life.

 

NEWS

Springer. Evidence of widespread metabolite abnormalities in Myalgic encephalomyelitis/chronic fatigue syndrome: assessment with whole-brain magnetic resonance spectroscopy

https://link.springer.com/article/10.1007/s11682-018-0029-4

Stat News. The NIH is thwarting research on a poorly understood yet serious condition

https://www.statnews.com/2019/01/10/nih-obstacles-thwart-myalgic-encephalomyelitis-research/

Sage Journals. Changes in the transcriptome of circulating immune cells of a New Zealand cohort with myalgic encephalomyelitis/chronic fatigue syndrome

https://journals.sagepub.com/doi/abs/10.1177/2058738418820402

Health Rising. Decoding the 2-day Cardiopulmonary Exercise Test (CPET) in Chronic Fatigue Syndrome (ME/CFS)

https://www.healthrising.org/blog/2019/01/17/decoding-2-day-cpet-chronic-fatigue-syndrome/

Health Rising. Not Fatigue After All? New Model Suggests Other Symptoms Better Explain Chronic Fatigue Syndrome (ME/CFS)

https://www.healthrising.org/blog/2013/01/17/not-fatigue-after-all-new-model-suggests-other-symptoms-explain-chronic-fatigue-syndrome-mecfs-better/

Simmaron Research. Could the Gut Cure Neuroinflammation? An MS and ME/CFS/FM Inquiry

http://simmaronresearch.com/2019/01/gut-cure-neuroinflammation-m-s-mecfs-inquiry/

The ME Association. US study of onset patterns and course of illness in ME/CFS 

https://www.meassociation.org.uk/2019/01/mea-summary-review-us-study-of-onset-patterns-and-course-of-illness-in-me-cfs-29-january-2019/?fbclid=IwAR0d0-az2FwWdoRm31B19IuNcXhss6-i24oDz6nGBhndMONCzLMVu6wmOKc

Health Rising. The Hummingbird: Could a Blood Flow Enhancer Help With Fibromyalgia, POTS and ME/CFS?

https://www.healthrising.org/blog/2019/01/29/hummingbird-fibromyalgia-pots-chronic-fatigue-syndrome/

Health Rising. Hypocapnia Cerebral Hypoperfusion: New Kind of Orthostatic Intolerance Points to Key Factor in ME/CFS and Others

https://www.healthrising.org/blog/2019/02/01/hypocapnic-cerebral-hypoperfusion-orthostatic-intolerance-chronic-fatigue-syndrome/