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 Ten. What’s My Future?

*Warning – This post touches on a very sensitive issue in the last two paragraphs, maybe especially so for someone currently experiencing bereavement. My intention is not to upset or shock. I am simply being honest about how my illness affects me, and what my future may hold, should a cure or treatment for ME never be found.

I read an article recently that had me bawling my eyes out for most of that day. What I read was nothing I didn’t know already, but every now and then I am reminded of the bleakness of my situation, and I become overwhelmed by grief, hopelessness and uncertainty. The article is about NLP (Neuro-linguistic programming) which I have no interest in, so I’m not really sure why I read it, but these two paragraphs were what really got to me…

“The most important, and possibly the most difficult task for a person who has ME/CFS, is to reframe exercise as harmful, something to avoid in the same way one would avoid anything which was known to make an illness worse. We do not think it is a sign of weakness for people to avoid smoking, alcohol consumption or sugary foods, let alone dangerous drugs. In fact we may admire the willpower of people who can do this. We do not think it is silly for people who have allergies, especially life-threatening allergies, to avoid the things which are a danger to them. Physical exertion is a danger to people who have ME/CFS; if doing something can make an illness worse for a short time, and doing more of it can result in permanent and severe disability, it makes sense to avoid it. But our culture’s worship of ‘exercise’ doesn’t make it easy for anyone to take on board that it can be actually harmful.”

“We need to be committed, determined, in our battle to get the rest our body needs to fight this illness. We need to fight against our natural impulse to be active, to go the extra mile, to be the first to offer help, to sacrifice our own interests – we need to fight against our natural impulse to pretend we are just fine when we aren’t – in fact we need to be really strong in the face of disbelief, criticism, people who ‘don’t believe in ME/CFS’. You know why we must? Because all of that is the kind of person we are, and the only way we are ever going to be able to be that person again is, right now, to give that up. The more we demand our right to act like an invalid right now, the sooner we may begin to regain, little by little, the ability to be that person. And unless we are very strong and very determined to act like invalids right now, we may find that we drive ourselves into permanent invalidity, permanent severe disability.”

“We need to fight against our natural instinct to be active.” This might be the most depressing sentence I’ve ever read. Because I know, when it comes to ME, that it’s true, and I hate it, I hate that it’s true. I’m trapped in a world where over-exertion (physical and mental) will cause my symptoms to worsen and possibly cause permanent severe disability. But if I never over-exert myself and stop myself from doing all that comes naturally to me, then my mental health will deteriorate. I already take steps to avoid over-exertion. For example… Sainsbury’s deliver the bulk of my groceries and my mum tops me up between deliveries. I pay someone to clean my home. My mum puts my bins out, changes my bedding and waters my plants. After a bath or shower instead of using precious energy to dry myself with a towel I put on a dressing gown made of towelling material and lie down in bed until I’m dry. I use a shower stool. I wear noise cancelling headphones on car journeys. But despite the many steps I have taken to decrease the use of my limited energy I know I still do too much. What else can I give up? Visits from friends and family? Phone conversations? Preparing and cooking my meals? Baking? Writing this blog? Writing emails? Texting? Social media? Brushing my teeth? Washing? Getting dressed? Putting face cream on? Filling my kettle? All these things can cause my symptoms to worsen, but they are also essential for my emotional well being, not to mention my personal hygiene. So what on earth am I meant to do?

This current wave of fear and confusion comes at the same time that I’ve started taking the use of my heart rate (HR) monitor more seriously. Many people with ME use a HR monitor to help with pacing, in order to avoid over-exertion, and the post-exertional symptoms that go along with that. The aim is to stay within our anaerobic threshold. The anaerobic threshold is the heart rate beyond which we draw on energy reserves we don’t have. The threshold is around about 60% of a person’s maximum heart rate. So I should aim to stay below a heart rate of 110 beats per minute. I wear a heart rate monitor and it beeps at me when I go over 110. Saturday was a bad day, I was in day three of a migraine and I was feeling very low in mood. On a bad day I can’t manage as much as on a normal, or better day. This was reflected in my heart rate. Every time I picked something up, like the kettle, my phone, a mug of coffee, I would hover between 130 and 140 beats per minutes. I reached 136 when I put my face cream on, and I reached 167 when I made my breakfast. I started writing a facebook message to a friend and within the first sentence I reached 135. I reached 154 when I started writing this. I started to think of my HR monitor as the enemy, and was worried it was only going to become a source of anxiety. I felt like I was going to have to become a slave to my HR and ‘behave’ by staying below 110, and to do that I would have to give up, well everything really. And that made me feel even more depressed.

After I read that article and after my first day of monitoring my HR I started to wonder if I should cancel all my upcoming plans. Should I cancel coffee with my mum on my birthday this week? Should I cancel my sisters, niece and nephew visiting the Saturday after my birthday. Should I cancel the plans I have for friends to visit me over the next few months? Would cancelling these things mean I was ‘behaving’, and doing what I should be doing to get better? Or, by attempting to enjoy what little I can of this wretched life am I destroying my only chance of recovery? If, in ten years time, and I’m no better, will I look back and blame myself for doing ‘too much’? Or will I understand that I needed to do those things in order to maintain my mental health? This has been going round and round in circles in my head. There’s no answer.

I personally value the quality of my life over how many years I live. If I could be guaranteed a healthy five years, with the same quality of life I had pre-ME, knowing I would die suddenly after the five years were up, I would choose those quality five years over what I have now. What I have now is possibly decades of simply existing in a sort of non-life, just monitoring my heart rate while waiting for the day I magically get better, or the day I die. A life in which I am mainly housebound, a life starved of human interaction, a life in pain with no relief, a life without hobbies, a life without being able to explore my interests, a life without the chance of ever finding a partner, a life without travel, a life without work, a life without spontaneity. Every now and then I become crippled by the fear, the confusion, the uncertainty, the just not knowing what to do for the best. The reason I don’t know is because no one knows, not even doctors know. When you have ME you are alone, alone without having a clue about what to do to get better, and this terrifies me. I can’t bear the thought of living to a grand old age no better than I am now.

There is however something I can do to regain control of my future. There is a way I can put my future in my hands. And it begins with completing my membership with Dignitas. I’m not saying I will seek their help with assisted suicide this year, or the next, or in the next ten years, but it comforts me that this is an option. I don’t want to live out the rest of my possibly long life as incapacitated as I am now. I value my freedom and my independence far too much. My life as it is now is simply not enough for me.

A ‘Swiss death’ is not a knee jerk reaction on my part. I do suffer from depression, a common side-effect of chronic illness, but my membership request to Dignitas pre-dated my depression. I have known since 2002, during my final year at university that assisted suicide was a possible option for me. That was when my dad was diagnosed with early-onset Alzheimer’s Disease. It was then that I started thinking about my own mortality, and how I would want to die if I ever got diagnosed with an incurable or terminal illness. I never thought I’d get that illness twelve years later. The Ron Davis quote that I shared in Post Nine seems appropriate here… “The good news is, these patients don’t die. The bad news is, these patients don’t die.”. Many people think the severity of an illness is based on if it can kill you or not. Yes, a premature death is devastating. But so is a long life, where the only promise is one of pain, suffering and isolation.

By the way, just in case it doesn’t go without saying. Obviously my preference is that that I regain my health (sooner rather than later) and I go back to living and enjoying my life. That is what I want more than anything.

Post Nine. Why I Write This Blog.

I came across a blog post from The Mighty this morning and I urge you to please read it. It explains so well why someone living with chronic illness might share so much about their illness on social media. I’m aware I might have Facebook friends who think I’m oversharing, or attention seeking. I’d like to think that anyone who knows me well enough would know that this is not the case. I wonder if people think that I’m too ‘negative’. All I can say is, I’m realistic, I’m honest, I don’t exaggerate and to be frank, if anything, I probably downplay the reality of my illness. I don’t share everything. I possibly use humour too much, to make you feel less uncomfortable. And so begins why I share so much about my illness…

ME is a serious and debilitating illness, I want you to understand that.

It is unfortunate that the reality of living with ME is really very shitty, and that’s putting it mildly. So when I’m being honest about my illness, it’s going to come across, as guess what, really very shitty. ME is an incredibly debilitating illness. For moderate to severe patients (I’m on the severe end of moderate), living with ME is said (by many experts) to be “like living with late-stage cancer, advanced stage AIDS, or congestive heart failure, for decades”. ME is unfortunately such a massively misunderstood illness though that those comparisons may have shocked you, or even offended you. I am absolutely not downplaying the horrendousness of AIDS, or cancer, or congestive heart failure or any other serious and life-threatening illness. I am not looking for sympathy. I am trying to make you see ME more clearly for what it is. If being honest about my really very shitty illness is ‘negative’, then so be it. (Why is negativity such a bad thing anyway? Emotions and feelings can come in both positive and negative varieties. I personally don’t feel it’s healthy to repress what I’m feeling, I let it out, I ‘feel’ it, good or bad, and if it’s negative, I work through it, and eventually move on, and this will sound really clichéd, but maybe I’ll have learnt something from it.).

Not convinced that ME is that debilitating?*

I split my clinical time between the two illnesses (ME/CFS and HIV), and I can tell you if I had to choose between the two illnesses I would rather have H.I.V. But C.F.S., which impacts a million people in the United States alone, has had a small fraction of the research dollars directed towards it.”—Dr. Nancy Klimas, AIDS and CFS researcher and clinician, University of Miami

“They [ME/CFS patients] experience a level of disability equal to that of patients with late-stage AIDS and patients undergoing chemotherapy…” – Dr. Nancy Klimas, CFS researcher and clinician, University of Miami (2006 Press Conference)

“In my experience, (ME/CFS) is one of the most disabling diseases that I care for, far exceeding HIV disease except for the terminal stages.”—Dr. Daniel Peterson (Introduction to Research and Clinical Conference, Fort Lauderdale, Florida, October 1994; published in JCFS 1995:1:3-4:123-125)

“We’ve documented, as have others, that the level of functional impairment in people who suffer from CFS is comparable to multiple sclerosis, AIDS, end-stage renal failure, chronic obstructive pulmonary disease. The disability is equivalent to that of some well-known, very severe medical conditions.”– Dr. William Reeves, former CDC Chief of Viral Diseases Branch

“[ME/CFS patients] are more sick and have greater disability than patients with chronic obstructive lung or cardiac disease, and … psychological factors played no role.”—Dr. William Reeves, Chief of the ME/CFS research programme at the US Centres for Disease Control (CDC) (Press Release AACFS, October 7th, 2004).

“[ME/CFS patients] feels effectively the same every day as an AIDS patient feels two months before death; the only difference is that the symptoms can go on for never-ending decades.” —Prof. Mark Loveless, Head of the AIDS and ME/CFS Clinic at Oregon Health Sciences University (Congressional Briefing 1995)

The good news is, these patients don’t die. The bad news is, these patients don’t die.” – Ron Davis, California-based geneticist whose son has ME/CFS

To spread awareness.

My blog started because I wanted to raise awareness of ME. I know that there are many people in the world, including health professionals who do not take this illness seriously. I also know there are people in my life who do not take this illness seriously. Mainly due to being uninformed. But also, my friends and family (apart from my mum) only see me when I’m feeling well enough to see people. So of course you may see me and think, ‘ME doesn’t seem that bad’. Unless you are my mum, you have never seen me on my worse days, or possibly even my ‘normal’ days. You have only ever seen me on the ‘better’days, the days that I can scrounge up a bit of excess energy to have a conversation (I had no idea before ME how much energy was required to hold a conversation). You also see me putting on an act, I often pretend to feel better than I am. But also, when I am with people, I don’t want to go on and on about ME, I’m already living it, I don’t want to be always talking about it! It’s also an invisible illness, you can’t see my pain, my exhaustion, my weakness, my dizziness, my brain fog etc. You also don’t see me in the hours or days after your visit, when I am suffering for it, when every inch of me is in pain, when I don’t have the strength to hold my phone, when I’m crawling because my legs are too weak. So I am probably partly to blame for the people in my life not knowing the reality of my life with ME. The problem is, when I am feeling too unwell for visitors, I simply cannot have visitors. And the majority of my days are spent being too unwell for visitors. I recently had someone ask me how I was doing. I told them ‘really weak, achy and slowed down, like there’s an elephant sitting on my shoulders’. In reply they asked if I had a bug, or if it was an extra bad ME day. But no, it was a very normal, nothing out of the ordinary, run of the mill ME day for me. After two and a half years of this illness, people still struggle to understand. I hope this blog will help with that. Also, and most importantly, no one is going to fund research for an illness they aren’t aware of.

It gives me a sense of purpose that I don’t get elsewhere.

It gives me purpose and a sense of accomplishment. My purpose before I became ill was to help people. I worked, alongside an army of incredible volunteers, for a homeless charity redistributing surplus food from the food industry to those who needed it the most. I supported people with all manner of obstacles and difficulties in their lives, people excluded from their families and their communities, on their life journey. I could see how I was contributing to the world, to my community, to people’s lives. I could see the difference I was doing. That is what I did for a living. It was a privilege, and I was working with some of the most inspiring people I have ever met. In that job I had found my vocation in life. A friend of mine at the time told me I was her hero, that she was so proud of me. I now haven’t been to work for over two years. I no longer contribute. I’m not helping anyone. I have no purpose. I don’t feel that I have anything to offer anyone. I’m not making anyone proud. That was until I started receiving some really wonderful feedback about my blog. Then I got my first message from a stranger. A stranger who was newly diagnosed with ME, and my blog had helped them feel less alone. For the first time since I had been off work I felt I had accomplished something, something that had helped another person, and that makes my blog all the more worthwhile.

I have something that is mine, that I am in control of. It makes me feel a bit more ‘normal’.

My life is ruled by my illness. ME affects every single aspect of my life, there is not one thing that it hasn’t had an impact on. Daily tasks that were once so easy, so natural, are now mammoth tasks of endurance. All of my decisions these days revolve around my illness, I no longer have the freedom and independence that I valued so much. I’m not in charge, ME is. But my blog is all mine, I control the content, I control when I publish a post. Of course ME dictates when I can write and for how long, and it always punishes me afterwards. But I can bitch about it all I want in my blog. Mwa ha ha ha. 😉

It helps with the isolation and loneliness.

Back when I had a life (pre-ME) I would occasionally cherish having a few quiet days to myself, knowing I wouldn’t see another human until I was back at work on Monday. However, having two (plus) years to yourself when it is not through choice, when it is forced upon you through illness is horrible, and boring, so mind-numbingly boring. It is frustrating. It is upsetting. It is depressing. It is lonely, very very lonely. The isolation, I have found, can feel as bad as, if not worse, than the illness that brought upon the isolation. This illness prevents me from keeping in touch with people with the frequency and regularity I used to (I need both the required energy and a certain level of cognitive function to do that). And that results in people not contacting me as much as they used to. To go from being surrounded by people every day at work, the gym, the pub, the supermarket, the bus, or a restaurant, a cinema, Leith Walk, etc, to being almost housebound so very suddenly has been heartbreaking for me. It is incredibly difficult to cope with. Like in the post I shared from The Mighty, my world has become smaller and smaller, and I am alone most of the time. We need human contact, and my social media accounts, and my blog, have become my main source of interaction with other humans. I’m so grateful to at least have been struck down with a long term illness during the age of social media. When I share something about my illness on Facebook, whether an article, or one of my blog posts, I hope for ‘likes’ or comments. Not to feed my ego, but because it shows me that I am being heard. At least one person, for a short time, was thinking about me, and I feel a little less lonely, a little less forgotten and a little less invisible. And when, like me, you are so starved of human company, that one ‘like’ can keep me going for the rest of the day.

*Sources…

www.meaction.net

Dr Nancy Klimas. Readers Ask: New York Times Interview

Dr Nancy Klimas, Dr Daniel Peterson, Dr William Reeves and Prof Mark Loveless quotes

Ron Davis quote

Post Seven. Symptoms.

This is purely an informational post. I sometimes share articles about ME on Facebook and Twitter, but I can’t be sure anyone reads them, very few people at least let me know that they’ve read them. So occasionally I’m going to write a blog post highlighting a particular article that I want to share, in the hope it will reach more people.

So, for anyone who thinks ME is nothing more than ‘being tired’, this is for you! Below are the symptoms a person must have in order to be diagnosed with ME. I have taken this information from the ME International Consensus Criteria, published in the Journal of Internal Medicine 2011. (The ME International Consensus Criteria is an update of the Canadian Consensus Criteria, the proposed clinical criteria for ME published in 2003.)

I will highlight with a tick if I have one or more symptom from each category. I also experience symptoms not listed here. For example, for women, ME can affect the menstrual cycle. I won’t go into each and every way this affects me, but it’s only since I’ve had ME that I experience painful ovulation. I can tell exactly when I ovulate, and from which ovary, which, if it wasn’t so painful, would be pretty cool!

Click here to view the original article. Myalgic Encephalomyelitis: International Consensus Criteria, Journal of Internal Medicine, first published 22 August 2011.

Myalgic Encephalomyelitis: International Consensus Criteria

Introduction

Myalgic encephalomyelitis (ME), also referred to in literature as chronic fatigue syndrome (CFS), is a complex disease involving profound dysregulation of the central nervous system (CNS) and immune system, dysfunction of cellular energy metabolism and ion transport and cardiovascular abnormalities. The underlying pathophysiology produces measurable abnormalities in physical and cognitive function and provides a basis for understanding the symptomatology. Thus, the development of International Consensus Criteria that incorporate current knowledge should advance the understanding of ME by health practitioners and benefit both the physician and patient in the clinical setting as well as clinical researchers.

Using ‘fatigue’ as a name of a disease gives it exclusive emphasis and has been the most confusing and misused criterion. No other fatiguing disease has ‘chronic fatigue’ attached to its name – e.g. cancer/chronic fatigue, multiple sclerosis/chronic fatigue – except ME/CFS. Fatigue in other conditions is usually proportional to effort or duration with a quick recovery and will recur to the same extent with the same effort or duration that same or next day. The pathological low threshold of fatigability of ME described in the following criteria often occurs with minimal physical or mental exertion and with reduced ability to undertake the same activity within the same or several days.

Myalgic encephalomyelitis is an acquired neurological disease with complex global dysfunctions. Pathological dysregulation of the nervous, immune and endocrine systems, with impaired cellular energy metabolism and ion transport are prominent features. Although signs and symptoms are dynamically interactive and causally connected, the criteria are grouped by regions of pathophysiology to provide general focus.

A patient will meet the criteria for postexertional neuroimmune exhaustion (A).

At least one symptom from three neurological impairment categories (B).

At least one symptom from three immune/gastro-intestinal/genitourinary impairment categories (C).

At least one symptom from energy metabolism/transport impairments (D).

A. Postexertional neuroimmune exhaustion: compulsory

This cardinal feature is a pathological inability to produce sufficient energy on demand with prominent symptoms primarily in the neuroimmune regions. Characteristics are as follows:

1. Marked, rapid physical and/or cognitive fatigability in response to exertion, which may be minimal such as activities of daily living or simple mental tasks, can be debilitating and cause a relapse. ✔

2. Postexertional symptom exacerbation:e.g.acute flu-like symptoms, pain and worsening of other symptoms. ✔

3. Postexertional exhaustion may occur immediately after activity or be delayed by hours or days. ✔

4. Recovery period is prolonged, usually taking 24 h or longer. A relapse can last days, weeks or longer. ✔

5. Low threshold of physical and mental fatigability (lack of stamina) results in a substantial reduction in pre-illness activity level. ✔

Operational notes: For a diagnosis of ME, symptom severity must result in a significant reduction of a patient’s premorbid activity level. Mild (an approximate 50% reduction in pre-illness activity level), moderate (mostly housebound), severe (mostly bedridden) or very severe (totally bedridden and need help with basic functions). There may be marked fluctuation of symptom severity and hierarchy from day to day or hour to hour. Consider activity, context and interactive effects. Recovery time: e.g. Regardless of a patient’s recovery time from reading for ½ hour, it will take much longer to recover from grocery shopping for ½ hour and even longer if repeated the next day – if able. Those who rest before an activity or have adjusted their activity level to their limited energy may have shorter recovery periods than those who do not pace their activities adequately.Impact: e.g. An outstanding athlete could have a 50% reduction in his/her pre-illness activity level and is still more active than a sedentary person.

B. Neurological impairments: At least one symptom from three of the following four symptom categories

1. Neurocognitive impairments

a. Difficulty processing information: slowed thought, impaired concentration e.g. confusion, disorientation, cognitive overload, difficulty with making decisions, slowed speech, acquired or exertional dyslexia ✔

b. Short-term memory loss:e.g. difficulty remembering what one wanted to say, what one was saying, retrieving words, recalling information, poor working memory ✔

2. Pain

a. Headaches:e.g. chronic, generalized headaches often involve aching of the eyes, behind the eyes or back of the head that may be associated with cervical muscle tension; migraine; tension headaches ✔

b. Significant pain can be experienced in muscles, muscle-tendon junctions, joints, abdomen or chest. It is noninflammatory in nature and often migrates. e.g. generalized hyperalgesia, widespread pain (may meet fibromyalgia criteria), myofascial or radiating pain ✔

3. Sleep disturbance

a. Disturbed sleep patterns:e.g. insomnia, prolonged sleep including naps, sleeping most of the day and being awake most of the night, frequent awakenings, awaking much earlier than before illness onset, vivid dreams/nightmares ✔

b. Unrefreshed sleep:e.g. awaken feeling exhausted regardless of duration of sleep, day-time sleepiness ✔

4. Neurosensory, perceptual and motor disturbances

a. Neurosensory and perceptual:e.g. inability to focus vision, sensitivity to light, noise, vibration, odour, taste and touch; impaired depth perception ✔

b. Motor:e.g. muscle weakness, twitching, poor coordination, feeling unsteady on feet, ataxia ✔

Notes: Neurocognitive impairments, reported or observed, become more pronounced with fatigue. Overload phenomena may be evident when two tasks are performed simultaneously. Abnormal accommodation responses of the pupils are common.Sleep disturbances are typically expressed by prolonged sleep, sometimes extreme, in the acute phase and often evolve into marked sleep reversal in the chronic stage.Motor disturbances may not be evident in mild or moderate cases but abnormal tandem gait and positive Romberg test may be observed in severe cases.

C. Immune, gastro-intestinal and genitourinary Impairments: At least one symptom from three of the following five symptom categories

1. Flu-like symptoms may be recurrent or chronic and typically activate or worsen with exertion.e.g. sore throat, sinusitis, cervical and/or axillary lymph nodes may enlarge or be tender on palpitation ✔

2. Susceptibility to viral infections with prolonged recovery periods ✔ (a new symptom for me, my prolonged tonsillitis, 7 weeks and counting…)

3. Gastro-intestinal tract:e.g. nausea, abdominal pain, bloating, irritable bowel syndrome ✔

4. Genitourinary: e.g. urinary urgency or frequency, nocturia ✔

5. Sensitivities to food, medications, odours or chemicals ✔

Notes: Sore throat, tender lymph nodes, and flu-like symptoms obviously are not specific to ME but their activation in reaction to exertion is abnormal. The throat may feel sore, dry and scratchy. Faucial injection and crimson crescents may be seen in the tonsillar fossae, which are an indication of immune activation.

D. Energy production/transportation impairments: At least one symptom

1. Cardiovascular:e.g. inability to tolerate an upright position – orthostatic intolerance, neurally mediated hypotension, postural orthostatic tachycardia syndrome, palpitations with or without cardiac arrhythmias, light-headedness/dizziness ✔

2. Respiratory:e.g. air hunger, laboured breathing, fatigue of chest wall muscles ✔

3. Loss of thermostatic stability:e.g. subnormal body temperature, marked diurnal fluctuations; sweating episodes, recurrent feelings of feverishness with or without low grade fever, cold extremities ✔

4. Intolerance of extremes of temperature ✔

Notes: Orthostatic intolerance may be delayed by several minutes. Patients who have orthostatic intolerance may exhibit mottling of extremities, extreme pallor or Raynaud’s Phenomenon. In the chronic phase, moons of finger nails may recede.

~~~

So, does this help you non-believers?