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 Fourteen. ME and Me, By Amelia.

Welcome to my first guest post, written by my very talented niece Amelia, who is twelve years old.

It began a school assignment, ‘A primary seven personal project about a subject of her choice of interest to her’. To my delight and surprise, Amelia chose to do this assignment on the subject of Myalgic Encephalomyelitis (ME), and how my illness affects her. It’s an impressive piece of work. She did her own research, she chose some really descriptive images, and she makes some very interesting and insightful observations. I admit that when I read her first draft, it had me in tears, in a good way! I am just moved beyond belief that Amelia chose to use this as an opportunity to raise awareness of ME, I’m so proud of her, and I’m a little bit in awe of her to be honest. Again this has made me feel so incredibly lucky to have such supportive people in my life.

Everything else you’ll read below, is by Amelia.

 

ME and Me, by Amelia.

“The good news is, these patients don’t die. The bad news is, these patients don’t die.” Ron Davis – Geneticist

This quote was made by a Californian geneticist whose son suffers from Myalgic Encephalomyelitis.

Myalgic Encephalomyelitis, commonly known as ME is a chronic illness which has affected my family since early 2015 when my Auntie Phoebe was first diagnosed.

In this report I am going to first tell what ME is, how it is caused and some of the symptoms of ME. I will write about the very common misconceptions that many people have regarding ME. I will write about how it affects my Auntie Phoebe and how it affects me and my family. I will also write about what is currently being done to help sufferers and how we can help people who are affected by this horrible illness.

Myalgic Encephalomyelitis

What is it?

Myalgic Encephalomyelitis, also know as ME, is a terrible illness that affects hundreds of thousands of people across the UK and millions worldwide.

It is a neurological illness, which means that there is something physically wrong with the nervous system. It is also a chronic illness, which means it is life long and there is currently no cure. It affects many body systems like the nervous system, which is the network of nerve cells that communicates with the brain, and immune system, which fights germs and diseases.

Many ME sufferers have severe, persistent fatigue. Fatigue is another way of describing extreme tiredness.

Not everyone who has ME will have the same symptoms so it is impossible to compare them to one another. Two people might get ME at the same time from the same probable cause but one could recover in a few years and the other could have it for the rest of their life. That’s one of the reasons why it’s a very hard illness to understand.

img_0762Symptoms of ME

· Post-exertional malaise. This is the extreme exhaustion felt after any physical or mental activity, such as a phone conversation, filling out a form, taking out the bins or making tea, or the worsening of all symptoms.

· Gastro-intestinal problems. These are problems with the stomach, gut and intestines.

· Cognitive dysfunction. This is also known as brain fog. When you have brain fog, you are unable to remember, reason, concentrate and think.

· Headaches

· Sleep problems

· Muscle weakness

· Intense pain all over the body

· Depression, as ME limits human interaction so much so it is easy to become depressed.

img_0763

These are only a few of the many symptoms. Every ME sufferer experiences different symptoms at different times.

Causes

The exact causes of ME are unknown, but there are many theories of what they could be. Here are some of them.

· A viral or bacterial infection that damages your immune system

· Your genes

· A hormonal imbalance

· Immune system problems

img_0764

What can be done?

The NHS have created a treatment plan for ME sufferers that is meant to relieve their symptoms. Many ME specialists disagree strongly with these methods as they have been proven to cause harm to patients. The plan consists of daily exercise, like swimming and walking. ME sufferers are sometimes unable to stand up, how could exercise help them?

It would tire them out so quickly, they would have to interact with others and the payback the next day would be horrific. These plans could worsen patients significantly.

There is no cure for ME. Invest in ME, which is a research charity trying to find a cure for ME, is hopeful that one day there will be a cure. Current treatment can only treat the symptoms, not cure the illness.

img_0765Common Misconceptions of ME

ME is a very misunderstood illness that people don’t take seriously. It is commonly called “yuppie flu”, which is offensive in so many ways to ME sufferers and their families. In the 1980s, it was dismissed as yuppie flu or shirker syndrome. People said that if they went out for some fresh air or even go see a therapist, that they would feel better. Some people said they were faking it or some put it off as being a bit tired. Due to modern research, these horrible remarks and rumours have been proved wrong but there are many people out there whose belief of ME needs to be put straight. The more people that are told the truth about ME, the better.

img_0766

My Experience of ME

My Auntie Phoebe was diagnosed with ME in early 2015.

Before she was diagnosed, she was a shift coordinator working at a food depot run by a homelessness charity. She was in charge of recruiting, training and supervising volunteer workers and helped manage the depot. She organised pick ups and deliveries of food to many charities working with homeless and vulnerable people in Edinburgh. She loved being in such an important position and giving people a chance to get back on to their feet. She also loved driving a forklift truck!

A few months before she become ill, in May 2014, Phoebe was offered her dream job, working at the Penguin Post Office in Port Lockroy, Antarctica. In summer 2014, she started to feel ill and went to several doctors and consultants before being officially diagnosed with ME. Heartbroken, Phoebe had to withdraw from this amazing opportunity. She has been practically house bound since then. Just over a year ago, she had to move from Edinburgh to Peebles to be nearer my Grannie. She had to stop working in 2014 and now lives on (very few) benefits and her savings.

One of the things that Auntie Phoebe does to help her come to terms with her illness is to write a blog called puffins&penguins&me about her experience of ME. It is beautifully written and very informative.

She also encourages her friends and family to hold fundraising events. Last March, the day before Mother’s Day, my mum and I held a fundraiser for Invest in ME. We organised a mother and daughter afternoon tea in the Scout Hut in Currie. We advertised on Facebook and sold etickets. We made many different kinds of cake and sandwiches, served tea and coffee, borrowed massage tables and set up a nail bar so mothers could get pampered by their daughters. We also asked local businesses for raffle prizes and sold tickets. We made £651 and we gave half to Invest in ME and the other half to my gymnastics club.

It was my Grannie’s birthday a few weeks ago, which happened to be on National ME day on 12th May. She threw a party wanting only donations for Invest in ME. She made over £1000!

One of the most difficult things about ME is that sufferers do not look ill. Phoebe went to Grannie’s party and looked beautiful. She managed to stay out for nearly 3 hours, which is the most socialising she has done in years. What people don’t see is the suffering she had the next day.

This is an excerpt from her blog.

“Today I woke up with the worst ‘hangover’ of my life. That’s the best way to describe it. Before you say anything…I only drank water last night, I can’t drink alcohol since I’ve had ME. It took me over two hours after waking up this morning to be able to move and get out of bed, despite desperately needing to pee. I had to crawl to the bathroom, and then back to bed to rest from the overexertion of going to the bathroom. I wanted to brush my teeth but I couldn’t hold my arm up. After another hour of lying down I was able to come upstairs to prepare coffee and something to eat. My head is absolutely pounding, my sinuses are throbbing, my throat hurts, my limbs are heavy, my muscles are aching, there’s an imaginary elephant sitting on each of my shoulders weighing me down, my skin is sore, I’m nauseous, my tonsil wounds are hurting again, it hurts to swallow, I feel faint and dizzy, I’m weak, I feel like I have a temperature (ok, I just checked it and I do have a temperature) and my brain is absolute mush.”

Before she got ME, I would see my auntie all the time, have days out, sleepovers and holidays together. Now Phoebe is so affected by this horrific illness that I rarely see her. Often we arrange to meet her but then she is so ill that we can’t even pop in to say hello or give her a coffee. I love her so much and I would see her everyday if I could.

A Typical Day

These are Phoebe’s words but I have changed them a bit.

  • 10pm – 1am – Falling asleep – this never happens easily and often takes hours.
  • 1am – 11am – Broken sleep, often with hours of wakefulness. A symptom of ME is insomnia.
  • 11am – 2pm – I try to wake up and get up. This can often take hours. When I wake I feel paralysed. I wash my face and brush my teeth and check emails. I can no longer shower every morning.
  • 2pm – I go upstairs and make breakfast. I am completely vegan and eat nothing processed.
  • For the next few hours – I lie on the sofa, sometimes watch tv. I can’t read a book as I can’t focus for long enough. I have to close my eyes for 5 minutes every half hour to regain some energy but I never nap. I slowly prepare dinner, having a rest every few minutes. A 20 minute meal takes over 3 hours to prepare. Sometimes my mum comes in to visit me, she does my dishes and takes out the bins. I listen to music. I suffer from pain every day. I also have sensory overload so I wear noise cancelling headphones and only take them off when I have a visitor. I leave the house every Wednesday for an appointment with my counsellor and rarely leave the house apart from this.
  • Late evening – I go to bed and it all starts all over again.

What you can do to help

I am not going to tell you to become a neurological scientist to help ME sufferers. There is one very simple thing that you can do to help. TELL PEOPLE! All you need to do is tell others about this illness. It doesn’t matter who it is, your mum, dad, grannie, grandpa, uncles, cousins, friends, as long as you are telling someone. Tell them to tell others too! I know it sounds like a movie plot but seriously, just spreading the word can help. So, please help brighten the future of ME and tell everyone you know about this horrible illness.

On Friday 12th May, there was a demonstration outside the Scottish Parliament, trying to persuade SMPs to spend more time understanding this illness. This movement is called #millionsmissing meaning that millions of people are missing out on their lives. It was symbolised outside Parliament by pairs of shoes that never go outside. Here are Auntie Phoebe’s work boots on her forklift truck.

IMG_8664

I know it won’t happen overnight but I really hope that one day, science will have found a cure for ME.

Glossary

Myalgic Encephalomyelitis – A medical condition characterised by long-term fatigue, pain and other symptoms that limit a persons ability to carry out ordinary activities.

Neurological – relating to the anatomy, functions and disorders of the nerves and nervous system.

Post-exertional malaise – The exhaustion felt after any activity and worsening of all symptoms.

Cognitive disfunction – also known as brain fog which means you can’t think clearly.

#millionsmissing – the movement of ME sufferers and supporters to make ME a more understood illness.

Post Thirteen. My Mum’s Birthday/Fundraising Party for Invest in ME.

My mum shares her birthday with ME Awareness Day and last night she held a birthday/fundraising party for Invest In ME. Instead of presents and/or cards she asked for only donations. She still has a few promises of donations to come, but it’s looking like she will have raised over £1000 in total! Incredible!

I attended the party and I don’t know how I did it but I managed to stay for three hours and had multiple conversations with my mum’s friends, mainly answering questions about how ME affects me. It was a lovely evening and a welcome distraction from the terrible week I’ve had.

I knew it was more than I could safely manage. Throughout the evening I knew I should escape to a quiet room to lie down for a rest, but I really didn’t want to drag myself away from the party. I miss out on so much already, I couldn’t bear to miss out on the fun going on around me. So I unadvisedly pushed through.

Today I woke up with the worst ‘hangover’ of my life. That’s the best way to describe it. Before you say anything…I only drank water last night, I can’t drink alcohol since I’ve had ME. It took me over two hours after waking up this morning to be able to move and get out of bed, despite desperately needing to pee. I had to crawl to the bathroom, and then back to bed to rest from the overexertion of going to the bathroom. I wanted to brush my teeth but I couldn’t hold my arm up. After another hour of lying down I was able to come upstairs to prepare coffee and something to eat. My head is absolutely pounding, my sinuses are throbbing, my throat hurts, my limbs are heavy, my muscles are aching, there’s an imaginary elephant sitting on each of my shoulders weighing me down, my skin is sore, I’m nauseous, my tonsil wounds are hurting again, it hurts to swallow, I feel faint and dizzy, I’m weak, I feel like I have a temperature (ok, I just checked it and I do have a temperature) and my brain is absolute mush. I remember feeling like this in the past, but it was easier to cope with when it was self-inflicted through an excess of fun and alcohol. All it took on this occasion was three hours of pleasant conversation the evening before.

This was the first party I’ve attended since 2014, and the first situation I’ve put myself into that I knew would involve constant interaction and conversation with people. I knew it was a risk. This is the worst payback I’ve experienced for quite a while. It’s made me realise that up until last night, I’ve actually been fairly good at pacing and managing my activity to avoid PEM (post exertional malaise). I hope in one evening I haven’t undone any progress I may have made so far. When this bout of payback is over will I go back to how I was doing pre-party? Or is this the beginning of a new phase in my illness? I have no idea. But this is something I have to think about with every single decision I make. I have to weigh up the pros and cons of everything I do. Will the boost to my mental and emotional health outweigh the potential negative and possible long lasting impact on my physical health? I don’t know. It’s impossible to know. I go into everything I do blindly.

While I’m punishing myself for my stupidity and desire to be ‘normal’ for an evening, I can at least take comfort in the fact that the charity, Invest In ME, who campaign for biomedical research into ME, will soon have over £1000 to invest into ME research. This is on top of the money raised by my friends and family in the past few weeks. I have great people in my life who are going out of their way to raise awareness of ME and who are raising money for much needed research.

I’m also quite sure that after this bout of payback fades, that I’ll only have fond memories of a lovely evening. My mum still lives in the house I grew up in, it’s a wonderful and beautiful Victorian house full of lovely memories. It was really lovely last night to see the house and garden so alive with people, chatter and music. The children played on the garden wall and surrounding trees, my niece waited on the guests in style with her bow-tie and flowery Dr Martens. The food was excellent, the wine was flowing (not in my direction obviously) and the live music was a lovely touch. And above all I’m so touched by the incredible generosity of my mum’s friends who donated their time and money, and my wonderful mum, who donated her birthday to help find a cure for ME.

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