Post Thirty Six. NICE Delay Publication Of New Guidelines.

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

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

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

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

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

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

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

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

This was supposedly proven in the now discredited PACE Trial.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Excerpt from NICE Draft Guideline

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

Excerpt from NICE Draft Guideline

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

Excerpt from NICE Draft Guideline

Click here for the full draft guidelines.

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

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

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

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

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

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

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

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

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

NICE 17 August 2021

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

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

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

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

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

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

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

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

Disputed therapies for myalgic encephalomyelitis abandoned

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

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

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

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

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

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

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

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

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

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

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

I have so many questions rolling around my bewildered head…

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

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

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

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

NICE should be utterly ashamed of themselves.

#MEACTION PETITION

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

SOME NOTABLE REACTIONS TO THE NICE STATEMENT

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

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

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

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

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

George Monbiot, Journalist, Twitter

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

Carol Monaghan, MP, Twitter

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

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

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

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

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

Sean O’Neill, Journalist, Twitter

ME CHARITY STATEMENTS

The ME Association

Action For ME

#MEAction

Invest In ME Research

ME Research UK

Doctors With ME

IN THE NEWS

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

BBC Outrage at chronic fatigue syndrome advice update pause

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

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

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

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

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

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

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

Post Twenty Four. Unrest In Peebles.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

NEWS

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Post Twenty. Thank You For Funding My Wheelchair!

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Claire, Stacey, Morag, Carola, Richard, Morag, Naomi, Kate, Gavin, Heather, Anthony, Nick, Paul, Jennifer, Lorna, Rebecca, Alan, Alison, Luca, Gillian, Kathleen, Ann, Bill, Gusia, Robert, Rhona, Seonaidh, Viv, Ian, Caroline, Ann, Gary, Morag, Robert, James, Jessica, Colin, Lorraine, Dot, Natasha, Christine, Kelly, Tony, Jennifer, Kathy, Clare, Kimberly, Angela, Phil, Richard, Clara, Agnieszka, Claire, Peter, Vikki, Sandy, Abigail, Emma and Anonymous Donors x 16.

Thank you so much everyone who helped me raise the money for my soon-to-be electric wheelchair. I’m completely overwhelmed by the generosity, support and encouragement I have received over the last few weeks. It’s been a really incredible experience.

Amazingly, I met my initial target of £2795 on day 12 of my campaign! It was so quick that I couldn’t even withdraw any of the funds yet!

When I set my target of £2795, I had been planning on covering the costs of the JustGiving fees (roughly 6.5% of the total amount raised) and the delivery fee for my wheelchair (£80) myself. However, some of my friends who had intended to make a donation, hadn’t been able to yet as they were waiting for payday. They asked me, after I had met my initial target, if they could contribute to these fees. So, taking this into consideration, I decided to increase my target to £3075. Which I then met on day 22! This means I now have enough not only to buy the wheelchair, a second battery, a travel bag/cover and three years of insurance, but it will also cover the delivery fee, and the fees deducted by JustGiving.

I have now withdrawn the funds and am just waiting for them to transfer to my bank account, which can take up to ten days. Then I’ll be able to contact Careco and order my new wheelchair!

Campaign began – Saturday 14th October 2017

I reached number 5 in the JustGiving Leaderboard! This means that only 4 other campaigns on JustGiving received more donations than mine in the previous 24 hours. – Sunday 15th October

Met first target £2795 –  Wednesday 25th October 2017

Met second target £3075 – Saturday 4th November 2017

I’m so grateful for every donation. This outpouring of support has been quite overwhelming, and it has meant so much more to me than simply being able to purchase the wheelchair.

As you may know from my previous post (Post Sixteen. Wheelchair Or Not?) I’ve been feeling very nervous about this wheelchair. While the sensible part of my brain tells me this will be good for me, the anxious side feels, well, anxious. It will, I imagine, take me some time to feel comfortable using in public spaces, such as Peebles High Street. While I get used to it, in terms of how it makes me feel, and how to operate it, I’ll be practising in less public places, and this will take as long as it takes!

I will also, as always, need to be careful about my overall use of energy. Having a wheelchair will not cure my ME. I will still only be able to go out, and use my wheelchair, when I feel well enough. This might mean only once a month, sometimes less, or sometimes more frequently. I do realise that it can be confusing for people to understand that I may not be able to undertake an activity that I managed to do a few days, or hours, or weeks previously.

Basically, my body has a pathological inability to produce sufficient energy on demand. Which means I have a limited amount of energy that I can use on a day to day basis. I have to pace myself and my activity, and be very careful to stay within my ‘energy envelope’, so to speak. Oh, and to make it even more interesting, my energy levels fluctuate, so I never know when I wake up how much energy I’ll have that day. If I over-exert myself, whether physical or mental exertion, and go outside my energy-envelope, that will cause a crash, which means my symptoms will worsen, and it can take, days, weeks, or months to recover. This worsening of symptoms after exertion is known as Post Exertional Malaise, which is the defining/cardinal symptom of ME. I really wish it had a better name though, ‘Malaise’ is so misleading, and really not very descriptive of the devastating destructive brutality of this symptom. I tend to refer to it as ‘payback’, because that’s what it feels like, like I’m being punished by my body for daring to live a little.

Now, if I were being very very sensible, I would only ever live within my energy-envelope, or my baseline, as it’s also sometimes known. In theory, if I stay below my baseline, I’ll be able to live with minimal symptoms. The problem is, life within my baseline is incredibly dull and boring, and it has done considerable damage to my mental health. I need more from life than what my limited envelope of energy allows.

There are also many things that use energy that are simply outwith my control, especially emotional stress. I can control the amount of physical activity I do, but I have no control over the things that I find upsetting, from the Tories persistent assault on the poor, vulnerable and disabled, to someone I love being in an accident, to my laptop dying. The resulting emotions, thought processing and communication required to sort these things out can also take me days, weeks or months to recover from. I’m also affected by sensory input; temperature, light, noise, smell and movement. No matter how well I control my environment at home, I cannot control the outside world.

So in a perfect world I would never go above my baseline. Even on my better days I’m meant to limit my activity/use of energy, and this is incredibly frustrating. It’s so difficult to suppress my natural instinct to be active, to go outside, to be sociable, and like so many people with ME, I tend to overdo it on my better days. This pattern, the overdoing it on the better days, then paying for it for days, weeks or months after, is known as ‘boom and bust’, and it’s what I should be avoiding. But like I said, this makes life so boring, too boring for me, and it’s that, along with the isolation that this life forces upon a person, that has damaged my mental health, and as a result I am now being treated for depression.

So anyway, this has been a really long way to explain why you won’t suddenly see me out and about every other day in my wheelchair, and also why you might see me only once every few weeks, maybe enjoying Dawyck Botanic Gardens, or Haylodge Park etc. For me, at this stage of my illness, I want to use the wheelchair to enjoy the places, mainly in nature, that have been inaccessible to me for the last couple of years. The wheelchair, will hopefully allow me to take in some of these places, every now and then, but not too often, without over exerting myself so much, that I’ll suffer for it afterwards. Also, please don’t be confused or alarmed if you see me walking! I can walk short distances, and by living right in the centre of town, this means I can walk, occasionally, to a nearby shop, or Costa, and to my weekly counselling appointments, which luckily, are very close to my home.

Something that I gained from this crowdfunding experience that I wasn’t expecting, was, it helped to take the edge off my fear of the wheelchair. I was so very moved, not just by the incredible generosity, but also the encouraging and supportive comments, that I actually began to feel excited. Everyone who donated has made this possible for me, and I feel like, it’s not just me anymore who is emotionally invested in this purchase, you are too, and I can’t wait to show you what you have paid for. One of the comments on my crowdfunding page said “I’ve been trying to find another little something to send you but instead I shall buy you a brake cable or a switch or something”. I love this! I love thinking that you can all decide which bit of the wheelchair you paid for. Obviously the brake cable is already spoken for, but there are four wheels, two batteries, the joystick, and all the others bits and pieces that hold it together and make it work, unfortunately some of you will be stuck with the insurance, which is kind of boring, but still necessary.

When I first set up my campaign, I never expected to reach my target, and I thought maybe only my mum and a handful of friends would donate. I’m so touched by every single person who made a donation. My family, my friends, my family’s friends, old colleagues, classmates from school and university and people I don’t even know. It’s so lovely that there are people who care enough to help out someone they’ve never met, unless we have met and I’m terrible and don’t remember! Although, being the daughter of two teachers from the local high school, and with a rather distinctive and rare surname, means that it’s possible some of these people know of me, or my parents, or my older sisters, and we do actually have some kind of connection. Or maybe they’re just dead nice people! Which of course, all of you are, whether you know me personally or not. The loveliest thing of all is knowing, and it took a friend to remind me of this, that “it’s proof, not that it was needed, of how much you are loved and cared about”. And this came at a much needed time.

I would also like to thank a few of our local media people.

Shortly after I set up my crowdfunding campaign I approached Kris Tatum at the Peeblesshire News. For me, it was more a matter of raising awareness of ME, which as I’ve said many times, is hugely misunderstood, (please read my last post for more info in regards to this Post Nineteen. Time For Unrest) than it was to get donations. But I was delighted to find that, after my story was published, I began to get donations from these lovely strangers I’ve spoken about. Shortly after my Peeblesshire News article was published I was contacted by Ally McGilvray at Radio Borders, who kindly publicised my campaign on air and on their website. Then, I was contacted by Sarah Frances at The Southern Reporter, who also very kindly featured my story.

You can read these here…

The Peeblesshire News

http://www.peeblesshirenews.com/news/15610306.Housebound_Peebles_resident__39_s_plea_to_get_her_life_back/

Radio Borders

https://planetradio.co.uk/borders/local/news/peebles-charity-worker-makes-plea-wheelchair-leaves-housebound-two-years/

The Southern Reporter

http://www.thesouthernreporter.co.uk/news/peebles-woman-smashes-wheelchair-fund-target-1-4601029

Thank you very much Kris, Ally and Sarah for helping to spread the word about ME, and of course for all the donations that were made as a result.

And lastly, thank you to JustGiving, who provided me with the platform that made this possible. Unbeknown to me when I set up my campaign, JustGiving help to spread awareness of the campaigns on their site. Sarah at The Southern Reporter was only made aware of my story when she received a press release from JustGiving! I find that quite remarkable, that someone at JustGiving made the effort to track down my local newspaper. Absolutely worth the fees they charge!

Now that I have managed to raise awareness of ME a little bit, I would very much like, if you would like to increase your awareness even further, to bring the film Unrest to your attention. Rather than going into it here, again I’ll direct you to my previous post, in which I kind of reviewed/shared my feelings after having watched it myself.

Post Nineteen. Time For Unrest.

If you like the sound of it, I’m delighted to share with you, that you (Peebles people) will be able to see it on the big screen at the Eastgate Theatre on Thursday 18th January at 7.30pm. Tickets are now available! If we can scrounge together enough people for a panel, including me, there might be a Q&A session afterwards! For non-Peebles people, you can find details of how/where to watch it, on the big screen or at home, in my previous post (Post Nineteen).

Thank you again everyone who supported me through my campaign. It means so much to me, and I’m forever grateful. I will update you all after the arrival of my fancy new wheelchair!

PS. If you would like a reminder of the wheelchair that you have funded, here you go…

(I had previously shared a video here but it no longer seems to be available, so here are a couple of photos.)

 

Post Nineteen. Time For Unrest.

Unrest image.png

“A revelation and a call to action” – The Salt Lake City Tribune

“Riveting…equal parts medical mystery, science lesson, political advocacy primer and even a love story” – The San Francisco Chronicle

Jennifer Brea is an active Harvard PhD student about to marry the love of her life when suddenly her body starts failing her. Hoping to shed light on her strange symptoms, Jennifer grabs a camera and films the darkest moments unfolding before her eyes as she is derailed by M.E. (commonly known as Chronic Fatigue Syndrome), a mysterious illness some still believe is “all in your head.”

In this story of love and loss, newlyweds Jennifer and Omar search for answers as they face unexpected obstacles with great heart. Often confined by her illness to the private space of her bed, Jen is moved to connect with others around the globe. Utilizing Skype and social media, she unlocks a forgotten community with intimate portraits of four other families suffering similarly. Jennifer Brea’s wonderfully honest portrayal asks us to rethink the stigma around an illness that affects millions of people. Unrest is a vulnerable and eloquent personal documentary that is sure to hit closer to home than many could imagine.

I have been awaiting the arrival of this film for some time. It has been a few years in the making but I only found out about it after watching Jen Brea’s TED talk earlier this year. Having already been screened in other parts of the world, and winning lots of awards on its way, Unrest had its UK premier just a couple of weeks ago in London. For those of us too unwell to go to our closest screening, we had the opportunity to pre-order the film online, and patiently, or not so patiently, wait for the 31st of October, the day of its release.

On Tuesday I was finally able to download it and I watched it in stages over the following three days. What can I say…

It’s beautifully made.

It made me cry and it made me smile.

I felt validated. So often people tell me how I should feel. That I have to be hopeful, that I can’t give up, that I have to believe that I’ll recover. Watching this film reminded me that everything I have felt since having ME, every emotion and every fear has been valid.

It made me feel sad, angry and frustrated. I felt moments of grief and moments of rage. I also felt understood, and grateful. I felt like I belonged, like I was part of a community, an uprising!

Unrest: a state of dissatisfaction, disturbance, and agitation, typically involving public demonstrations or disorder

The most surprising reaction I had to the film, was that I found it strangely comforting. I had thought it would be the kind of film that I would only want to watch once, that it would be too difficult to watch it on repeat. But I have already started watching it for a second time, and I think will watch it again, and again, whenever I feel a bit lost or disconnected.

My ME is not as severe as Jen’s was (while she was making this film), but it was all so familiar. The opening scene is very effective. I found myself holding my breath as I watched Jen try, with every fibre of her being, with every ounce of strength she had left, to lift herself off the floor and into bed. I’ve never, thankfully, been that disabled by my ME, certainly not for such a prolonged period of time. I have experienced that complete lack of strength, the extreme weakness in my body, when I haven’t been able to lift my head or my arms, or have lost the use of my legs. But I haven’t been as severe as Jen, in terms of, I am mainly housebound and am bedbound for at least half of the day, but Jen has been bedbound for months at a time.

When it comes to the ‘fatigue’ that people with ME experience, it’s this extreme weakness, this complete lack of strength and pure exhaustion that we’re talking about. It’s so far away from the myth that we’re ‘just tired’, I mean, it’s just nothing like being tired. It’s like referring to a hurricane as, ‘just a puddle’. It’s so insulting, not to mention factually incorrect, to conflate the two.

I’ve been thinking a lot about why we, the people with ME, have needed a film like this to come along.

It’s this idea that ME is just ‘being tired’ that drives the general perception of ME. It’s what many people think, until they get ME, or know someone who has ME. But even when you know someone with ME, you don’t really see the truth. Because when you see us, when we’re well enough for you to see us, our illness is largely invisible. You don’t see us when we’re alone at home, or in bed, so it’s easy to misunderstand, it’s easy to forget about us.

A lot of the misunderstanding is also due the damaging name, Chronic Fatigue Syndrome (CFS). If the term CFS didn’t exist, and our illness was only ever referred to as Myalgic Encephalomyelitis (ME), it would change perception immensely. The name CFS has done so much harm. It makes people think we’re just fatigued, just tired. And why would anyone spend their time campaigning for, running marathons for, signing petitions for, writing to MP’s for, raising awareness for… someone who is just tired.

The name CFS has also caused problems, in that, it’s easy to conflate the illness CFS (ME), with the symptom ‘chronic fatigue’. This confusion has had massive repercussions. So far, in the UK, the only government funded research into ME has been for psychological research. The ‘scientists’ involved believe that ME can be cured by ‘lifestyle changes’, Graded Exercise Therapy (GET), and Cognitive Behavioural Therapy (CBT). (Please read my previous post on the PACE Trial for more info.) The problem is, the participants of the trials didn’t actually have to have ME (for which the defining/cardinal symptom is Post Exertional Malaise) in order to participate, they only had to have ‘chronic fatigue’. So, the only treatments that the UK, and beyond, have to offer people with ME, are GET and CBT, ‘treatments’ which have only been trialled, not on people with ME, but people with chronic fatigue.

It is, I believe, this false notion of what ME is, that has enabled the unbelievable situation that we are in today. It has held back funding for biomedical research, it is why we have no safe or effective treatment options, no cure, no support from our medical establishments and little respect from the general public.

I can’t blame all the people for not having a thorough understanding of ME, how can any of us know everything about every illness. But, I do blame people, whether friends, family, doctors, scientists, MP’s, journalists, employers, anyone who knows someone with ME, who has a patient with ME, or a constituent with ME, who choose not to inform themselves. The people who choose apathy or blatant disbelief, despite the wealth of knowledge available online, and worse, despite what they are being told by their loved ones. These people are responsible for the decades of neglect and mistreatment that people with ME continue to face. It’s because of these people, that we have to use our precious limited energy on informing, fighting, campaigning and advocacy. These people are the reason that the film, Unrest exists. If Jen had been believed by her doctors from the beginning, she wouldn’t have had to turn her camera on herself. Her doctors only believed her, not on her word, but only once they saw visual evidence. That was the seed that planted this remarkable, and vitally important film.

This quote from the film seems particularly relevant right now…

What terrifies me is that you can disappear because someone’s telling the wrong story about you. I feel like that’s what’s happened to all of us who are living this. And I remember thinking, there’s no one coming to look for me because no one even knows that I went missing.

We need people to start listening, we need people to start telling the correct story, otherwise, nothing will change.

Sadly, a few days ago, we lost a member of the ME community. She was a wife, a mother, an active member of the ME advocacy community. I’ve shared this Ron Davis quote before, who actually features in the film, “The good news is, these patients don’t die. The bad news is, these patients don’t die.” It’s not, strictly speaking, true. Yes, it’s more common to live with ME for decades, than to die from ME, but that’s not to say ME can’t kill, it can, and it has.

I heard about her death via Jen’s Facebook page, this is what she said…

I am sad but mad as hell. When our community loses someone to this disease, my first thought is always, “someone killed you.” Because someone did. A lot of people.

Think about what Jen is saying here. Today, in 2017, we are no further forward in treating this illness than we were thirty years ago. We, the people with ME, are in the same place today that people with MS were in before the invention of the CAT scan. We have been waiting for far too long for the invention of our ‘CAT scan’ machine.

How can this be, that science is so behind when it comes to ME? It can be, because of the misconceptions that people have about ME. That’s it. It’s that simple. These falsehoods, these misconceptions have held back progress. They have fuelled the lack of investment into biomedical research. While people continue to tell the wrong story about us, while popular opinion (aided by the likes of Comedian Ricky Gervais – see trailer below) continues to believe that we are ‘just tired’, we won’t get anywhere. In order to get adequate funding for research, funding that is in line with other serious conditions, funding that will SAVE LIVES, we need people to tell the correct story. And this, is the reason I do what I do. This is why I write my blog. This is why I publicly share such personal information. This is why I approached my local paper to feature my crowdfunding campaign, not for the donations for my wheelchair, but for the opportunity to raise awareness. This is why I share every article I find about ME on Facebook and Twitter. I cannot just sit back and accept society’s neglect of us. I will continue to fight, I will continue to do everything in my power to make a difference. And after watching this film I am more fired up than ever before.

Something else that came up in the film was the loss of friends, a strange phenomenon that so often runs side by side with chronic illness. Jen said something interesting in a recent Twitter thread, it was about some of the reviews of Unrest, but it got me thinking further about the issue of fading friendships…

About half the film critics reviewing Unrest have said not it’s a “must see” but rather that it’s “a hard watch”. I’m the last person who should be speaking about the quality of my own film. But I can’t help but think what they are saying is “sick and disabled people are hard to watch”. Which is another way of saying – I’d rather look away. What I say at the end of every screening is that Unrest represents for people on this part of the spectrum, the best case scenario. And so while the world says, this is almost too heartbreaking to bear, patients say, you don’t know the half of it. It’s the height of privilege to be able to look away from pain, whoever’s pain it is. And so we are forced to package our pain, meter it, make it acceptable to others in a form that seduces or implores in just the right way. Which is the dance that EVERY oppressed group whether female, black, gay, transgender or disabled has been doing since forever. It is exhausting because there are times all I really want to do is scream.

A few of my friends have drifted out of my life since my diagnosis, and especially since I moved out of Edinburgh. Jen’s quote above made me wonder, do they, like the film critics, find me ‘too hard to watch’? I’ll never know. Because those who have removed themselves from my life have done so without a conversation, an email, a letter, an explanation. Has it been easier for them to walk away, than to face my life as it is now, to see me and my suffering? Is Jen right, is that the height of privilege, to be able to look away from other people’s pain? Have my lost friends made a conscious decision to look away? Were they so accustomed to the friendship that we used to share, that they can’t, or won’t, adapt to this new life of mine/ours? Or maybe they just don’t like me, that would be preferable actually. It’s something that I have been, and will continue to think about for some time.

What Jen said in her Twitter thread also made think about how I present myself. I use my blog to communicate, and to share. It’s my way of talking honestly about my experience of living with this illness, packaged nicely, but without rubbing it in your face. I try not to sugar coat it, but I do end up, sometimes deliberately, sometimes not, doing just that. I protect you from the most harrowing bits, I try not to come across as too negative, I word everything very carefully. Basically, I try to make my existence, my life, more acceptable to you. My blog, while it goes part of the way there, it doesn’t go into the absolute raw reality of my life, no words could, as with every other ME patient, however much I share, you don’t know the half of it.

Now, I knew I wouldn’t get through this film without crying. The first tears I shed while watching it were at this point…

It was like I had died, but was forced to watch as the world moved on. If I completely disappear and I’m in this bed and I can do nothing then it’s like I don’t even exist or that I never existed. And then what was the point of it all? Of being born in the first place? You know and honestly there are a lot of days when I just feel like I’m doing a good job by just holding it together and not killing myself. Like I’m really proud of that. And it’s not – I really don’t want to die. Like I really don’t want to die. But at a certain point it’s hard to call this living and I think the grief of all those things I might not do or see or have or…

That was Jen speaking, but it could be me, I’ve said all of these things. I’m proud of me too. I believe that anyone who can exist through this illness, with the suffering, the stigma, the disbelief, the isolation… are in possession of the most incredible inner-strength. What we live through, for years, decades, lifetimes, most (healthy) people would find unbearable for just one day. We’re positively superhuman. If I get through this alive, I’ll be so goddamn proud of myself. But if I don’t, I won’t blame myself at all. Like they say in the film, suicide is the leading cause of death in people with ME, and that isn’t shocking to me. Like Jen, I don’t want to die, but I do want to not have ME anymore. This is one of the hardest things I have faced while living with ME, the effort of staying alive. Yet, while I do my hardest every day to keep going forward, to remain hopeful, I joined Dignitas (a Swiss non-profit members’ society providing assisted/accompanied suicide). It’s kind of funny, given its purpose, but it’s my Dignitas membership that actually helps me to keep going, knowing that I have that option, one day, if I choose, it’s like my comfort blanket.

Importantly, Unrest also has a focus on those who care for us. The people we couldn’t be without. I don’t feel I’m in a place to comment in much depth, given I’m the patient, and not the carer. But I do know how hard this life can be, the life of caring for someone with ME. And when the carer is a spouse, a sibling, or a parent, etc, it can muddy the relationship a bit. It was lovely to see, despite the odd bit of frustration, i.e. the tent scene, how much Omar values and loves Jen and their marriage. From what they showed us, they don’t seem to have lost what they had before ME joined the relationship.

I think Jen, her husband Omar, and all the film’s ME participants have been extremely brave in making this documentary. I’ve been wondering if I’ll ever be brave enough to turn the camera on myself, I can’t see it happening, but then I also never expected to blog about this stuff, or end up in my local paper.

I would also like to thank Jen, Omar, everyone involved in the making of this film. It’s already making a difference. Here in the UK we desperately need the government and the NHS to start listening. We need funding for biomedical research. We need the NHS to stop prescribing ‘lifestyle changes’ which only harm, rather than help. The biggest ever investment into biomedical research in the UK came from America, the NIH! We need our own government invest in us.

One of the wonderful things that the Unrest team were able to do was arrange a parliamentary screening of Unrest. Forty three MP’s attended. We can only hope now that these MP’s will start fighting for us. Labour MP Mark Tami has already said…

This sort of stigma around ME is exactly the sort of thing we need to eradicate. Little is known about the illness and there is no known cure for it, which is probably why society appears to be so ignorant towards it.

ME is clearly a very complex condition but as a country we are not doing enough for patients who are suffering from it. This essentially boils down to funding, I therefore intend to push the Government to provide sufficient funding, and ensure this funding is adequately spent in the right areas.

This is exactly the kind of response we need from this film. I want people (the ones who don’t have ME) to have their eyes opened by the brutality/reality of what they’re watching. I want them to be amazed at the resilience of the ME patients featured in the film, against all the odds these people keep smiling and keep hoping. I want this film to educate people. I want it to highlight the dire need for treatment and a cure. I want the people who have previously dismissed ME to admit they’ve been wrong, to put that aside and to keep educating themselves and others. I want our governments and our medical establishments to stop ignoring us. I want this film to push people into action, and if it doesn’t, I don’t know what will.

 

Unrest Official Trailer

 

Jennifer Brea’s TED Talk

 

WATCH UNREST

On the big screen (in Scotland)…

Vue GLASGOW Fort, Monday 27th November, 7pm. Buy tickets here… https://www.ourscreen.com/film/Unrest

Odeon EDINBURGH Lothian Road, Wednesday 29th November, 6pm. Buy tickets here… https://www.ourscreen.com/film/Unrest

Eastgate Theatre and Arts Centre PEEBLES, Thursday 18th January, 7.30pm. Buy tickets here… https://eastgatearts.com/events/unrest/. (Particularly pleased about this screening in my own town, in the theatre I used to work in! Arranged by myself, my mum and a good friend.)

For other screenings, search here… http://see.unrest.film/showtimes/

Online…

On iTunes… https://itunes.apple.com/gb/movie/unrest/id1265409535?mt=6&ign-mpt=uo%3D4

On Vimeo… https://vimeo.com/ondemand/unrest

On Google Play… https://play.google.com/store/movies/details/Unrest?id=iTC0y4l1Jgc

On Amazon Video… https://www.amazon.co.uk/Unrest-Jennifer-Brea/dp/B075LS6ZTZ?tag=geo01-21

On VUDU… https://www.vudu.com/movies/#!overview/894864/Unrest

On Netflix… https://www.netflix.com/title/80168300?s=i&trkid=14170032

On DVD…

Unrest is coming to DVD in December. Follow this link and fill out the form to receive a notification when DVDs are on sale… https://www.unrest.film/watch/#DVD

 

UNREST REVIEWS / UNREST IN THE NEWS

ITV News: https://www.youtube.com/watch?v=7UVmIc6FKnE

BBC Breakfast: https://www.youtube.com/watch?v=ZRAM7Q2nx10

The Daily Telegraph: http://www.telegraph.co.uk/health-fitness/body/could-documentary-change-way-perceive-chronic-fatigue-syndrome/

BBC / Mark Kermode: https://www.youtube.com/watch?v=NGoK56TdNQY&t=2s

The Times: https://www.thetimes.co.uk/article/our-lives-were-frozen-by-chronic-fatigue-syndrome-rdftnm75p

The Pool: https://www.the-pool.com/health/health/2017/43/the-pool-talks-to-jennifer-brea-about-unrest-documentary

Huffington Posthttp://www.huffingtonpost.co.uk/dr-simon-duffy/uk-establishment-me_b_18375968.html

BBC News / Stories http://www.bbc.co.uk/news/stories-41888146

The Daily Express http://www.express.co.uk/life-style/health/870117/what-is-chronic-fatigue-syndrome-symptoms-treatment-me-unrest

The Salt Lake City Tribune http://archive.sltrib.com/article.php?id=4867522&itype=CMSID

The New York Times https://www.nytimes.com/2017/09/21/movies/unrest-review.html?mcubz=0

San Francisco Chronicle http://www.sfchronicle.com/movies/amp/Documenting-a-disease-from-the-inside-12217878.php

Megyn Kelly TODAY https://www.today.com/video/filmmaker-opens-up-about-illness-that-doctors-told-her-was-all-in-her-head-1056956483601

Cosmopolitan http://www.cosmopolitan.com/lifestyle/a12779054/what-is-chronic-fatigue-syndrome/

Chicago Reader https://www.chicagoreader.com/chicago/unrest/Film?oid=31012439

San Francisco Weekly http://www.sfweekly.com/film/film-film/unrest/

Los Angeles Times http://www.latimes.com/entertainment/movies/la-et-mn-capsule-unrest-review-20170928-story.html

The Hollywood Reporter http://www.hollywoodreporter.com/review/unrest-review-967867

Film Inquiry https://www.filminquiry.com/unrest-2017-review/

The Washington Post https://www.washingtonpost.com/national/health-science/a-film-directed-from-bed-tells-the-story-of-woman-with-chronic-fatigue-syndrome/2017/11/24/05a42594-cec1-11e7-81bc-c55a220c8cbe_story.html?utm_term=.bae816e6532c

Rotten Tomatoes https://www.rottentomatoes.com/m/unrest_2017

Vogue https://www.vogue.com/article/unrest-documentary-netflix-chronic-fatigue-syndrome-wellness

 

Post Twelve. How You Can Help.

People often ask me what they can do to help me, which is lovely. Within the texts and the emails I receive from my friends I often see ‘I wish I could do something to help you’, or a variation of the same sentiment. Generally speaking, I don’t expect help, no one has any duty nor obligation to help me or make my life easier. But, I have to admit to the fact that I can no longer do everything myself, I do need help. I need to accept help, and what is harder, I need to ask for help.

I’ve known this for a while, but what really brought it home was my recent experience while in week two of my tonsillectomy convalescence. There were a few days when my mum was very ill with a cold, she had a temperature and really had to stay at home and rest. She wasn’t able to do the things she normally does for me, she was just too unwell. For four days I was alone, with ME, post-surgery and with a cold too. I was running out of things that I needed but I couldn’t go to the shops, I can’t even do that on a normal ME day. I felt incredibly lonely, and the isolation made me feel very low in mood. I couldn’t bring myself to reach out and ask anyone to pop by for a visit or to go to the shops for me. I need to be able to ask for help. I really don’t know if my inability, apprehension, discomfort and/or fear of doing so is a normal chronic illness thing, or a Phoebe specific thing. Anyone?

Now, I had already planned a blog post about how my friends and family can help me in terms of raising awareness and fundraising etc, and I’ve decided to expand on that. So this post is to let you know what you can do to help me, should you wish to. There is no pressure and there are no expectations on my part. I’m being very honest and upfront about the variety of ways in which people can help me. But I know people are busy, people have families, and jobs, and worries and stresses of their own, and my needs shouldn’t come before your own. I will however be asking something of you, it’s a big deal, and it isn’t easy for me. But I have to, it’s probably the next step before I one day, maybe, need to hire a carer.

The ways in which you can help me basically boil down to the following…practical support, emotional support, raising awareness/campaigning, and fundraising.

Practical Support

Most of my practical support comes from my mum. She empties my bins, she washes my dishes, she changes my bedding, at the moment she does my cleaning because I’m currently without a paid cleaner, she does my shopping, she washes my hair when I’m too weak and she drives me to appointments. When my mum has been on holiday I have a friend who has stepped in and done some of these things for me, but she really had to push me to accept that she wanted to do these things. Obviously to be able to offer me this kind of practical support you need to live locally, I have friends and family far and wide who I know would help me with the practical stuff if only they lived closer.

My recent experience of suddenly being without my mum for a few days made me realise that I need to put something into place, should this happen again. What I need, I think, is a pool of people who would be happy to be on stand-by for situations like these. Someone who I can text asking if they could fill my prescription, or go to the shops, or put my wheelie bin out etc. But for me to be able to ask this of someone, I need to know, explicitly, that they are happy to do so. A vague offer of ‘let me know if I can do anything for you’, will never result in me asking you to do something for me. Maybe that’s a bit twisted, maybe it’s really weird of me, but that’s how I need it to be. The ‘let me know if I can do anything to help’ offers are kind, but I just don’t know, under such vague terms, what would be too much for me to ask. I think that’s the crux of the matter.

So, if anyone, who lives locally, who I know personally, would be happy to receive a text from me, should I need assistance with something, please let me know. It’s very likely you will at some point receive baked goods in return.

Emotional Support

While my geographically far away friends and family can’t help with my chores they can, and they do, keep my spirits up by keeping in touch via email. I have a few friends and family with whom I keep in regular contact using email, Facebook messenger or text. They check in regularly, they send recipes, articles or music that they think will interest me, and they simply keep in touch, just like they did before I was ill, or more so. I think many understand just how much more I need that, now that I’m so isolated and withdrawn from ‘real life’. Importantly they also understand that there might be a delay of a few days, or weeks, before I can reply, there’s no pressure for me to push myself to reply when I don’t have the energy or strength. I also have a few lovely friends who frequently send me incredibly thoughtful gifts, cards and letters through the post. This is seriously going above and beyond, but it’s always extremely appreciated. It’s a cliché what people say, that during the hard times you learn who your friends are, but it’s true. It really can bring out the best in people, and there’s the opposite, but let’s not dwell on that. At the moment I want to celebrate those who have helped me through this, because I couldn’t do it without them.

What also keeps me going is receiving visitors, this is what I live for. I like catching up with friends in person and chatting over coffee and cake as much as I ever did. Unfortunately with my circumstances being what they are, I have to limit how frequently I can see people and I have to put a time limit on each visit. Scheduling visits can be tricky, and despite my empty life, my calendar fills up remarkably quickly. To help you understand…to avoid PEM (post exertional malaise) I need to rest between activities, so I make it a rule not to schedule activities on consecutive days. Activities can include GP appointments, hospital appointments, Sainsbury’s deliveries, a friend visiting, going for a drive with my mum or counselling appointments etc. So lets say my friend who I maybe only see once or twice a year wants to visit but she can only do weekdays. Well, I have counselling every Wednesday so Wednesday’s are out, I need my rest day before and after counselling so that means Tuesday’s and Thursday’s are out. So we’re left with Monday’s and Friday’s. But if I already have plans for that Saturday then Friday is out, or if I have strayed from my plan and have a GP apt on the Tuesday (because it’s all she had available) then Monday is definitely out. I also try to stick to only one additional activity per week, on top of counselling. More than two activities per week is really pushing it for me, and from past experience I’ve learned it is extremely unwise, no matter how much I want to. Do you see why, despite my empty life, it can become tricky to schedule in a visit? It’s not because I’m living a full and exciting life, it’s because I have to plan everything, meticulously, around my illness and what is best for my health. I am learning, for the first time, how to put myself first, and it doesn’t come naturally to me. I understand that my lack availability might be off putting for you, I might come across as flighty, or like I don’t really want to see you, or like I’m making excuses, but I promise you, I want to see you. We both need to accept that it just might be a few weeks or months away, and that’s ok, it gives me something to look forward to, and I like that.

Raising Awareness and Campaigning

Raising awareness is incredibly important, because no one is going to fund research for an illness they are not aware of. Some people may think they are aware of ME, but the amount of misinformation out there is staggering.

What I want, is for ME to have the same impact as any other serious and life-altering illness/disease/condition. I hate that the world of chronic/serious illness is seemingly divided into cancer and not-cancer, but people ‘get’ cancer, they understand the seriousness of cancer. When you hear that someone has been diagnosed with cancer, you immediately feel the full impact of the horror of that disease. When you hear that someone has been diagnosed with ME, you possibly think they are just a bit tired, that a bit of rest will cure them, that it’s all in their head, that they just need to exercise, that they need to change their diet, that they’re lazy, or you might make a joke about yuppie flu. I’ve heard all of these. What I want is for people to understand the horror of ME. I want people, when hearing that someone they know has been diagnosed with ME, to ‘get’ it. I don’t expect non-sufferers to understand the intricacies of having ME, just like I don’t know the intricacies of having cancer, I’ve never experienced it, but I get the gist. I know that it destroys lives, it can tear families apart and it desperately needs a cure. So does ME; and people, our government, our health care workers, they all need to know that. Understanding would go such a long way in achieving the health equality that we, the 17 million people with ME, deserve.

This is probably the easiest thing I could ask of anyone. If you have a Facebook or Twitter account you can easily spread awareness by sharing any ME articles, or blogs I post. You can sign and share the petitions I share. You can follow the ME pages that I follow. Just by liking what I post on Facebook it will show up on your friends newsfeeds. You can also share my own blog. There’s bound to be at least one of your Facebook friends who thinks that ME is nothing more than ‘being a bit tired’. If sharing articles or my blog posts on your newsfeed can put that one person right, then that’s a job well done, the next time they hear a ‘yuppie flu’ joke they can put that person right. This is how you spread awareness, people power! Spreading awareness is one of the biggest and most meaningful things you can do for me, besides you know, finding a cure.

ME Awareness Month

You may or may not be aware but May is ME Awareness month. I can’t mention everything that is happening this month, this post is already pretty long, but I want to bring the #MillionsMissing movement to your attention.

#MillionsMissing is a movement to raise awareness for ME, which as you know is an underfunded and ignored illness. On May 12th 2017, ME Awareness Day, thirteen cities in nine countries will demand change. We ask for increased government funding for research, clinical trials, medical education and public awareness. I’m delighted to tell you that there will be a protest event in Edinburgh this year. This will be on Friday 12th May 2017 from 12:00 PM to 14:00 PM outside the Scottish Parliament Building. People with ME, their friends, families and carers will be there, and maybe a MSP or two. But there will also be lots of empty pairs of shoes with tags attached, these will be representing the #MillionsMissing. The millions of people with ME who are missing from their jobs, their families, their communities, their lives. Please join in if you can, and tell people, or if you pass the protest and can’t stop, take a quick photo and share on social media, with the #MillionsMissing hashtag. Click on the #MillionsMissing link above and scroll down to the blue section to find your closest protest.

Unrest

I’d also like you to look out for the documentary film, Unrest. Director Jennifer Brea was a journalist and academic studying for a PhD at Harvard. Months before her wedding, she became progressively ill, losing the ability to even sit in a wheelchair. When told by her doctor it was “all in her head,” her response was to start filming from her bed, gradually deploying crews globally to document the world inhabited by millions of patients that medicine forgot. I’m in communication with the Edinburgh Filmhouse to have the film screened there on it’s general release in the autumn, but it will be screened at various film festivals before then. You can also watch Jennifer Brea’s poignant TED talk ‘What happens when you have a disease doctors can’t diagnose’, here.

Please visit my About page to see which additional charities/movements I’d encourage you to follow on social media.

Fundraising

ME is a vastly underfunded illness, especially when based on the impact to the life of a person with ME, when compared to other illness. I couldn’t find relevant information for the UK, but, here is an article estimating the disease burden of ME in the United States and its relation to research funding. It’s pretty grim reading.

Donating money is an easy concept, for those with the financial ability to do so. Fairly recently, I think it was after I wrote Post Nine, a few people got in touch and asked me what my preferred ME charities were, in terms of donating money. If you feel that you would like to make a donation, these are my preferences…

Invest In ME

Invest in ME was formed in 2005 by patients and carers of children with ME. It is run by a small team of dedicated volunteers, the charity has no paid staff and keeps all costs to a minimum. They campaign and fundraise for biomedical research into ME. They really do so much, it would be a whole blog post to do them justice, please check out their website for more information. Invest In ME are my first choice, in terms of monetary donations.

Edinburgh ME Self-Help Group

Founded over 20 years ago, Edinburgh M.E. Self-Help Group (edmesh) is a support group for people with ME. They are a membership organisation run by a committee of volunteers and have no paid staff. Most of the committee have ME themselves.

#MEAction

#MEAction is an international network of patients empowering each other to fight for health equality for ME. It is not structured like a traditional advocacy organisation. They are a platform designed to empower patient advocates and organisations, wherever they might be, with the technological tools and training to do what they are already doing –better. They were founded with the belief that while we may find it difficult to advocate for ourselves in the physical world, in the virtual world, we can be an unstoppable force. This is exactly what I plan do to with the rest of my life, even if I get better, I’ll never stop advocating for people with ME.

Now for anyone who would like to challenge themselves whilst raising money for a ME charity you might be interested in…

Walk for ME

Friends and family of a ME sufferer do a sponsored walk, run or swim on their behalf, hence the name Walk for ME. The aim is to get as many friends and loved ones as possible to do a sponsored walk or other sponsored event during ME Awareness month in May, although it can be held in any other month. Walk for ME supports Invest in ME and ME Research UK. Both of which fund biomedical research and therefore offer the potential to help millions of people get their lives back. The whole idea is that a friend or family member is doing something that their loved one would love to be able to do but can’t because of their illness.

Something a bit easier…

Use the Easyfundraising website to collect free donations by shopping online. First you select your charity of choice on the easyfundraising website, I chose Invest In ME. To raise money, instead of going directly to the retailer website, log into easyfundraising first and click on the retailer you want to shop with. You’ll then be taken to the retailer’s website where you shop as you would normally. But because you visited easyfundraising first, your cause gets a donation.

Thank you!

Now I have some public thank you’s to give.

My friend Jo recently completed a 5k swimathon for Invest In ME, Marie Curie Cancer Care and the Swimathon Foundation. It’s not too late to sponsor her! Here’s a post-swim message from Jo…

“With your help, I’ve raised £235 online for Invest In ME so far. I completed the swim (all 200 lengths) last night in 1 hour 50 something – I was too tired at the end to pay attention to the time I was told. It’s my slowest time but considering how little training I did it wasn’t bad! I was 2nd in my pool last night out of 6 people doing the full 5km so I’ll just remember that fact! I lost count at 28 lengths, kept going for a good long time and had a break at 112 (I asked my counter), then sped up to 150, another few sips of squash and then to the end. A hat and goggles that were too tight combined with my lack of fitness gave me a killer eye/headache so I’ve been pretty lazy today. Almost feeling back to normal now with just achy shoulders. I know many people, especially my ME suffering friends would be ecstatic with that sort of recovery rate – that’s why I’ve raised this money to go towards researching this horrible disease.”

My friends Gillian and Ritchie are taking part in a 5k inflatable obstacle course, Gung-Ho! this month to raise money for Invest In ME. Please support them by sponsoring them in their bouncy endeavour! In Gillian’s words…

“My dear friend Phoebe has ME and since her diagnosis her life has been drastically altered resulting in her having to give up on most of her life time goals and ambitions. Even day to day life that we all take for granted are a struggle for her. I’m sure if you take the time to read her story you will understand how devastating this illness is.”

My 12yr old niece Amelia, with assistance from her mummy, my sister Emma, held a charity Pamper Afternoon Tea for mothers and daughters on Mother’s Day. They raised £631 which was split between Invest In ME and Amelia’s gym, Astro Gymnastics, which is in need of bigger premises. Amelia wanted to include a ME charity in her fundraiser because…

“I chose to raise money for Invest in ME because it is a charity that is very personal to my whole family. My Auntie Phoebe suffers badly from this condition and is currently unable to work, socialise or have any kind of normal life. So it is the best charity we could raise money for. It affects many people and raising money for Invest In ME could help other people with ME. It also will help raise awareness for ME. It is a very misunderstood illness and more people should know about it. We would love for Invest in ME to find a cure for this terrible illness.”

My mum happens to share her birthday with ME International Awareness Day, and this year she is donating her birthday to Invest In ME! She is holding a fundraising birthday garden party and instead of gifts and cards she is asking for only donations. In preparation she is currently experimenting with methods of keeping vast quantities of baked potatoes hot, and she is having hooks put into the back of the house to attach a tarpaulin, in case of rain. Although, so far in her life it has apparently only ever rained on her birthday twice, so the odds are in our favour.

My friends Chiara and Alex are getting married this summer and instead of gifts they would prefer their guests donate money to a charity, a concept that I love. They have chosen Invest In ME as one of their charities.

I have a few other friends who have floated the idea by of fundraising for Invest in ME, and hope to do something in the future, you know who you are, and thank you to you too.

Lastly, all the people who read my blog, who share it, who visit me, who help me with the boring practical stuff, who read the ME articles I post on Facebook, who sign the petitions I share, who keep in contact with me, who send me the articles, recipes and music you think I’ll like, who send me surprises through the post, thank you. x