A different way of living.

By Paul Mc Daid (@paulthedaid)

A few weeks ago, my dear friend Joan Mc Parland asked me to write a blog post chronicling some of my own experiences with ME. I wasn’t keen on the idea to begin with, as I tend to be quite a private person about these matters, and prefer only to write publicly about ‘ME politics’. Some of my friends (and particularly my long-suffering ex-fiancé) may roll their eyes at this last statement and say that I never stop talking about my illness, and I am in fact the definition of an extrovert. But, as most extroverts will tell you, usually this behaviour is a superficial diversion from what is really going on underneath. I keep my feelings and thoughts to my inner circle of friends, and can be quite shy about going public. However, when I do open up a little, I find that it is the best way to really connect with other ME sufferers, and it is also the way in which I invariably feel the most supported in return. And so, without any further ado…


I have four toothbrushes. Not one toothbrush and three spares; nor two toothbrushes, with two more toothbrushes in a toiletry bag; but four toothbrushes. All four in current use.  Unless you are lucky enough to own four separate residences, or perhaps were a 17th century king of France, I think it is quite unusual to have four toothbrushes. The reason I have four toothbrushes is that I suffer from very severe noise sensitivity, and I must choose from the type of bristle that I feel I can tolerate on any particular day. You can tell this is going to be a very exciting blog post. Welcome to my life.

Noise sensitivity is by far the worst symptom that I have experienced from a long list of God-awful symptoms since falling ill with ME nine years ago. Hyperacusis, as it is called, impacts virtually every single aspect of my life, and informs my decisions and my activities almost every minute of every day. I am unable to have even basic conversations or social interactions, I am prohibited from listening to music or watching TV, and worst of all I can’t spend proper time with my kids. Even short phone calls are difficult or impossible for me, making basic administration a challenge, and meaning that I must rely on others to help. I am mostly trapped indoors because of the noise of the outside world, and even when inside I must wear earplugs plus industrial ear defenders over the top, to cope with background domestic noise like a kettle boiling or a toilet flushing. Sadly, these ear defenders are not as attractive as they sound.

I have occasional good days when I can see friends or when I can take my kids to the park, but these are rare.  If I have a few glasses of wine at the weekend I can have a semi-normal social evening with friends or family, providing people keep their voices down and spend the entire evening catering to my needs. But even then, I always pay for it with days of screaming tinnitus, pain and swelling to follow. I am often left wondering if it is worth it, and if I am doing permanent damage to my ears by pushing, thereby making the situation worse for myself.

As far as I am aware, there is no treatment, and it is something I’m just stuck with. I therefore spend my days in a permanent state of noise-fear, and noise-avoidance . If I am exposed to too much noise (either loud noise or just extended background noise), I can have a severe flareup. During the flareups, even quiet background noise like central heating or clipping my nails elicits in my body a response similar to nails being scraped down a blackboard. It is the most nightmarish sensation I have ever experienced in my life. I would not wish it on my worst enemy. Flareups can take weeks to resolve, and so as you can imagine I do my best to try and avoid them. Psychiatrists may say that by avoiding noise I am making the situation worse for myself. They might argue that I get stuck in a loop of negative thinking and increased anxiety, causing the fear of noise to become more harmful than the noise itself. The problem itself lies in the anxiety, they might say. Fuck the psychiatrists.

Back to the toothbrushes. This is where it gets exciting. I almost exclusively brush my teeth in the shower, because the background noise of the water helps drown out the noise of the toothbrushing. I turn the heat up ridiculously high so the searing temperature gives me a boost of adrenaline, which also helps coping with the sound. On especially good days when my tinnitus is low, and I know my ears are good, I will use the big guns – my electric toothbrush. I enjoy nothing more than being able to tolerate the low growl, and I luxuriate in tenderising my neglected gums and feeling my teeth get a proper deep clean –  something I can only do perhaps once or twice per month. I then have two different manual toothbrushes of different stiffness from which to choose from depending on my sensitivity that day, or whether I am drunk or sober.

But my most commonly used toothbrush, my main man, is a specially adapted toothbrush which I bought online from Japan. This toothbrush is more like a sponge, with two thousand extra-soft bristles that were designed for brushing the teeth of pets. Yes, that’s correct. I use an animal toothbrush. Clever dentists from the Far East have designed a quiet toothbrush that make it less frightening for your horse, your parakeet, or your alligator to have their teeth brushed. An indirect benefit is that those of us with crippling hyperacusis can now brush our teeth with some comfort. This is the life of the ME patient – finding solutions, no matter how silly.

My four toothbrushes stand proudly on my sink every day awaiting selection. I may however design a utility belt, so that I can wear my four toothbrushes and carry them around with me, having each one within reach at all times. My oral hygiene has been a concern of late, as sadly I recently separated from my fiance and I am now single. I am therefore suddenly interested in the appearance of my teeth. Looking in the mirror today I decided I just have the teeth of a 41-year-old man. A 41-year-old man in 1870. I suppose my smile is the least of my concerns, but it has been difficult to keep my teeth whiter than white. On the occasions when my hearing sensitivity is not a problem, I am sometimes simply too weak to brush my own teeth. (Or anyone else’s teeth for that matter. Just to be clear.) Sometimes I have had to enlist a carer to brush them for me. At other times I just put a manual toothbrush in my mouth and chew it.

Flashy smile or no flashy smile, I think my ear defenders are my biggest obstacle, as they terrify anyone who I try to speak to. At least this is how it seems when I try to make occasional chitchat with a cashier at the shop, or on the very rare occasions when I can tolerate the noise in a café. It probably isn’t helped by the fact that I have lost some social skills as a result of being housebound for nine years. Before I fell ill, I was reasonably chatty, but I at least knew how to be a tiny bit cool. I knew not to jump all over strangers like a puppy dog, trying to forge instant friendships and bonds. I am aware that this is what Alan Partridge does. I have become Alan Partridge with added industrial ear covering. I guess I am a little bit like a thundercloud, weighed down with loneliness.  Whenever a human being passes by in close proximity, I am unable to stop my loneliness from discharging itself upon them. Whenever I speak to the waitress in the nearby café she immediately becomes defensive and wary, as if rather than saying that brownie was lovely thank you, I have just said ‘thanks for the coffee CAN I MOVE IN WITH YOU PLEASE?’

A short anecdote I like to tell illustrates just how completely unsuitable I probably am for dating due to my noise problems. A few years ago I heard some loud noise coming from the street outside the home I used to live in. Generally when this happens, I will sometimes venture outside and speak to the gardener or the labourer who is making the noise, and ask how long that it might last for.  If it is only going to be noisy for a brief spell I may take a shower to escape the sound for a few minutes. If it’s going to be an hour or so I may have to take some diazepam. Any longer than that, and I need to get dressed and take my ass the fuck out of Dodge.

On this particular occasion I couldn’t see where the noise was coming from by looking out of the window. I walked to the edge of the garden, and squinting down the street still could not see anything that could be responsible for the loud rumbling noise that was being made. Walking into the middle of the road, I peered to the end of the street and stood for a while wondering if I had the strength to walk the extra one hundred yards to investigate. As I stood there, a young schoolgirl came walking down the hill opposite my house towards me. As she turned a corner to pass me by, I gave her a small smile and a wave that I hoped communicated that I was not crazy. Hi there I was trying to say with my body language. Don’t worry about me. I’m just checking out the noise. You know how that goes.

She avoided my gaze, put her head down and hurried on. It was only after she had scuttled off into the distance that I considered my bizarre appearance. I was a forty year old man standing directly in the middle of the street, staring into apparently empty space with a look of fear and concentration on my face. I was wearing pyjamas, slippers, a dressing gown, sunglasses, my industrial ear defenders, and best of all, a baseball cap that said: WAYNE’S WORLD. It’s lucky that I was not arrested.

Realistically it’s going to be difficult for me to get a girlfriend isn’t it, what with the whole being housebound thing. Perhaps I can meet someone online. They say there’s someone for everyone don’t they? In the charming comedy novel The Rosey Project by Graham Simsion, we follow the ups and downs of professor Don Tilman, a likeable, handsome genetics professor with Asperger’s syndrome who is in search of love. The moral of the story is despite the funny adventures and mixes he gets himself into, in the end he still gets the girl. Hope springs eternal. There are people who get a kick out of caring for the weak. I think it’s got a name – Florence Nightingale syndrome. There might be someone out there for me right now – my soulmate, a girl who laughs at the same things I do and is attracted to men with teeth like Wyatt Earp.  Maybe dating online I could find someone who is stupid gullible desperate caring enough to give me a chance. I think on my profile however, I may omit the facts that I am unable to tolerate the sound of a kitten licking its own fur, and that I have the breath of a Japanese dog.


Ultimately, I don’t know if my noise sensitivity will ever improve. Of my other major symptoms, including severe physical fatigue and cognitive impairment, the last few years have been a story of slow progress, painful relapses, and more slow progress. But in general, I can see some improvement in many aspects of my quality of life. My noise sensitivity is the only symptom that appears to be getting worse. I don’t know if I have damaged an extremely sensitive part of the body, or if it is just another ME phase. Just another illusionary aspect of this unpredictable and cruel merry-go-round. If treatment becomes available for ME, I’m not sure if my noise sensitivity will respond. It is impossible to tell, because we don’t know what is wrong.

For now, like most ME patients, I cling to the good days, and look to the future with hope, as well as expectation. We have reason to believe that changes are afoot and that research is slowly answering questions about this illness. But I have a life to lead regardless. As painful and as difficult as it is, it is a life. It’s just different. A different way of living.

Paul Mc Daid has lived with severe ME/CFS for nine years. He is single and enjoys romcoms, cooking, and giving footrubs.


The Disturbing Fightback against NICE (cont.)

Below is the text of the email I sent to Scienenorway.no. It has not yet been published.


I take issue with the recent article by Live Landmark on ME/CFS, which appeared in sciencenorway.no ( The British guideline for CFS/ME is the result of activism, not research Wed, 1 Dec).

There are far too many inaccuracies in this piece to list, so I will concentrate on the two most staggering:

‘As a result, guidelines for diseases or illnesses should therefore not be based on reports of experience. Such anecdotal reports are inappropriate for medical policy, and not consistent with modern health practice.’

The author here is stating that guidelines for disease should ignore patient feedback – EVEN in the case of harm. If it were up to the author, patients would still therefore be receiving drugs that passed clinical trials, but caused harm in the community. These include Thalidomide, Viox, Voltarol to name a few. You could extend her argument to include more extreme medical procedures or even agricultural chemicals that were considered safe until put into widespread practice. This is the most dangerous thing I have read by a so called ‘scientist in a long time.

Secondly, she says the guidelines were arrived at by a committee composed of mostly ME patients, rather than scientific review. This is absolute nonsense. There was a three year review of all scientific studies available in the field, before recommendations were made to the committee. She also says that:

‘several randomized controlled trials have been performed on thousands of patients with CFS/ME. The studies, and the systematic reviews, show that the treatments have an effect and no serious side effects have been reported.’

Over 250 such studies were included in the evidence review, and every single one of them was graded as either ‘low quality’ or ‘very low quality’ by an independent scientific review panel.

The author has ignored that these studies have been discredited and has continued to cite them as scientific evidence. She has ignored reported harms from the community because there were no reported harms in the (discredited) trials which focussed on only mildly ill patients. She has perpetuated myths that the  ME community base their views on ‘beliefs’ and unscientific practices, which is patently the opposite of the truth, as has been made clear by this entire episode.

I found this article offensive, and it’s content dangerous and outdated.  In short, this in an unscientific, prejudiced rant that refuses to accept the outcome of an important and thorough scientific review.

I ask that sciencenorway.no prints my objections or considers distancing themselves from the author, who states herself in her conflict of interest section that she works for a company who provide ( presumably for a profit) treatments which have been found to be dangerous by the new guidelines. The wellbeing of  many Norwegian patients may depend on embracing some balance in this debate.

Yours Sincerely,

Paul Mc Daid


The Disturbing Fight Back against NICE

Even in progressive – and ME savvy – Norway, ‘scientists’ continue to push non evidence based and harmful treatment.

Below is a worrying – and wholly disingenuous – suggestion that the ‘evidence’ for psychological treatments has been suppressed in the UK.

In the next blog, I will post my email response to this piece.

Posted Sciencenorway.no on Wed Dec 01 by ‘Live Landmark.’

There has been a long-term debate in Norway about the controversial condition chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME).

Sociology researchers try to understand the phenomena through a historical lens and in a cultural context.

Biomedical researchers try to explain the symptoms by investigating possible underlying processes from a biomedical angle. Doctors considering how the mind and body have a role in illness try to help the patients with rehabilitation strategies and research.

The poor quality of the guidelines

It is both good and important to try to understand CFS/ME from various perspectives, but lately, there has been an inappropriate emphasis on the new British guidelines, called NICE guidelines. This is unfortunate, as the UK guidelines for CFS/ME are not based on rigorous research. Instead, they were created by a committee, a third of which was made up of CFS/ME patients, members of ME associations and ME forums, also called the “ME community”.ANNONSE

The committee has used “experience”, “opinion” and “agreement” as a basis for its advice on how to manage this condition, instead of controlled treatment studies and systematic reviews (quantitative studies). Three of the professionals on the committee withdrew ahead of the publication, while one was asked to leave, as reported in the British Medical Journal.

The guidelines have since received massive opposition from the major professional bodies of the UK medical professions and have equally been criticized by a broad section of the Norwegian professional community (Aftenposten, in Norwegian).

The difference in experience and measured effect

It is great to listen to patient experiences and clinicans’ practice-based knowledge, but, as discussed in this study in British Journal of Health Psychology, this has to include the experience of those of us who have recovered from CFS/ME. Unfortunately, no one was representing those voices in the committee.

The members of the ME community consider CFS/ME to be a purely biomedical disease and reject any treatments that do not support their views on the cause of their symptoms.

It is also important to note that experiences can say nothing about the cause, effect of treatment or prognosis. As a result, guidelines for diseases or illnesses should therefore not be based on reports of experience. Such anecdotal reports are inappropriate for medical policy, and not consistent with modern health practice. Instead, decisions need to be based on an independent critical appraisal and summary of the research that has been done, including quantitative studies that were set up to rigorously assess both the effects and side effects of treatment.

However, during the process of creating these new guidelines, no researchers with relevant scientific expertise were invited to contribute, which is both unusual and incomprehensible. Therefore, instead of using rigorous treatment studies and unbiased systematic reviews, they based their recommendations on “agreement” in the committee, and a few experience-based studies and refer, among other things, to the “ME community”.

The ME community and the polarization of the debate

The ME community is an Internet-based community, which has been described by Lian and Nettleton in this study. The study followed 14 ME forums over three years and revealed a virtual society with strong unity and a sense of belonging.

That is all well and good, but the challenge with such societies is that it creates a group identity, with clear divisions between “us” and “them”. The consequence is that those who participate in such societies view the “others” as adversaries. This can contribute to the polarization of the debate, which affects both researchers and patients.

The members of the ME community consider CFS/ME to be a purely biomedical disease and reject any treatments that do not support their views on the cause of their symptoms. The attitude is that one must save energy and adapt activities, even if there is no scientific evidence to support it, as discussed in this study in The Lancet.

The norm in the online communities is that there is a strong pressure on what is allowed and what is not allowed to be said, and there is no room for dissent. Lian and Nettleton found no examples of reporting positive experiences of the healthcare services. They found that members spread knowledge that corresponded with their perception of reality and warned about the “danger of psychological treatment”.

Diagnostic criteria

There are more than 20 sets of criteria for CFS/ME, where the different sets of criteria more or less overlap in the descriptions of fatigue and other symptoms. None of them have been validated, because no one can say what “real ME” is, but the Fukuda criteria (1994) are mostly used in research. A research group at the National Institute of Public Health in Norway assessed all the criteria. They did not find that one diagnostic set was better than the other and concluded that there was no basis for developing new diagnostic criteria. Research published in BMJ Open shows that the effect of treatment is independent of the diagnostic criteria.ANNONSE

The members of the NICE Committee, on the other hand, were concerned with the ME community. These patients believe that those who have recovered through psychological methods must have been incorrectly diagnosed with CFS/ME. The logic is: Those who recover from psychological methods cannot have had a biomedical disease. Thus, such experiences are rejected.

But the ME community represents a self-selected sample of patients. We do not know if they have been diagnosed with CFS/ME, by what criteria, or if they have diagnosed themselves. They, therefore, do not represent everyone with CFS/ME, and they exclude those of us who have recovered.

Criteria based on experience

The committee members nevertheless took their experiences and established new criteria, “NICE2021 consensus-based diagnostic criteria”. These criteria are based on the patients’ description of being tired, having concentration problems, sleeping poorly and experiencing worsening after activity.

The committee drew up guidelines based on its interpretation of qualitative studies, personal opinions and experiences from the ME community.

According to the NICE guidelines the diagnosis can be given after just three months of symptoms. In any case, the criteria are based on the committee members’ “experiences”, and it is telling that the guidelines conclude by encouraging research on the new criteria to see how good they are at identifying patients with CFS/ME.

Qualitative studies

The problem escalated further when the committee members agreed on using these new criteria for CFS/ME as a basis when previously performed studies should be evaluated. As a result, the evidence in all studies on patients who met other diagnostic criteria (such as the Fukuda criteria) got downgraded through GRADE, a method for assessing the certainty of the evidence base. This contributed to the studies on cognitive behavioral therapy (CBT) and graded exercise therapy (GET) being ranked as being of “low” or “very low” certainty. The consequence was that the committee was then able to discount research studies that showed a benefit of these interventions.

When the committee’s opinions resulted in the discount of evidence, they should have refrained from making guidelines until one had a more solid scientific basis from more research. Instead, the committee drew up guidelines based on its interpretation of qualitative studies, personal opinions and experiences from the ME community.

Normally, such experiences are used as a basis for developing hypotheses, for example, whether one believes that a treatment works or not. The hypotheses then form the basis for conducting larger studies that measure the effect of treatment, such as in quantitative studies. It is only in such studies that one can confirm whether a treatment has an effect or can be harmful. And it is only through systematic reviews, which involve a report on several such studies, that one can see the problem as a whole.

“Disastrous misapplication”

In the case of both cognitive behavioral therapy (CBT) and graded exercise therapy (GET), several randomized controlled trials have been performed on thousands of patients with CFS/ME. The studies, and the systematic reviews, show that the treatments have an effect and no serious side effects have been reported.

The committee’s opinions nevertheless caused a downgrading of all these studies. This action was immediately attacked by those who developed the GRADE method they had used calling it a “disastrous misapplication” of the GRADE procedures to develop guidelines.

Undocumented and unscientific advice

As a result of these concerning events, it is the committee members’ assessment of experiences and their own opinions, and not rigorous research, which has resulted in the British guidelines being changed and no longer recommending cognitive behavioral therapy (CBT) as treatment for CFS/ME, nor graded exercise therapy (GET) or the Lightning Process, despite the fact that research has shown effect for all of these interventions.

In practice, British patients with CFS/ME have now been deprived of opportunities to help them rehabilitate and recover. This is not what we want in Norway.

The illness that it is ok to mock (Part II)

 by Paul Mc Daid (@paulthedaid)

This is the second entry of a longer blog piece. Please see Part one for full context. 

The position of the ME community in the broader debate is easy to summarise: we know that the mind and body are linked. However, far too much funding has been spent purely on those who study the mind in ME – specifically, a small section of the UK psychological community who ignore biomedical research. Of course, a holistic approach to medicine that includes psychology is the best way to approach any chronic disease. But you can approach holistic medicine by speaking to alternative health practitioners, by going online, and by reading self-help books. When you speak to your doctor or consultant, you want not just holistic advice, but conventional medical advice. If you were suffering from cancer, you would choose to be referred to an oncologist, not a psychologist. If you protested, would that mean you don’t understand that your illness is multi-faceted, with a psychological component? Of course not. But this is the ridiculous situation ME patients find themselves in when they ask that biomedical researchers have their research applications approved. Dr Fitzpatrick says however, that by ‘repudiating any recognition of psychological factors… ME advocates implicitly endorse stigmatisation of mental health disorders.’ Wait a minute – because we want a scintilla of biomedical funding in this field, we are guilty of undermining a separate group of illnesses that bear little resemblance to our own? As someone who has suffered from depression, and who has lost a close friend to suicide, I wholeheartedly reject any notion that we have stigmatised mental health disorders in any way.  This is the kind of slanderous nonsense that we have to deal with on a constant basis.

Even though the mind and body are connected, in practice, medicine is compartmentalised. It is the only way to provide diagnosis, management and care to patients. When you enter a hospital, you turn left for neurology, right for cardiology, or go straight ahead for… You get the idea. When an ambulance arrives in casualty with an individual on a stretcher, action is taken. The patient is taken to surgery, to imaging, to cardiology, or to the appropriate ward. Surgeons and consultants do not stand around discussing the philosophical nature of cartesian dualism and the impact of the mind on the body. There is a time and a place for holistic thinking, and there is a time for action. This perhaps, is the crux of the schism – ME patients want their disease to be treated like any other, and for biomedical action to be taken. According to the best available science, psychology does not play a larger role in this disease than in any other. And that is a problem, because the lion’s share of the funding goes, every single year to a small group who Dr Fitzpatrick refers to as ‘the leading doctors in the field,’ and ‘the very men and women who are trying to help us.’  We fully accept and welcome psychological support, but we want it in proportion, and alongside other forms of medical funding.

The research published by the Wessely School that has defined the narrative surrounding this disease is staggeringly flawed. The general consensus is that results have been exaggerated, thereby wildly skewing the argument. This has two main outcomes – firstly, funding and attention are drawn away from biomedical research; and secondly, treatments that are declared as safe and effective may in fact be neither.

The most notorious example of course, is the now infamous PACE trial, which was described by MP Caroline Monaghan in a recent Parliamentary debate as ‘the biggest medical scandal of the 21st-century’. Criticism does not come from within the ME lobby alone. Even the UK psychological community are appalled at what they see as scientists dragging British psychology into disrepute. David F. Marks, editor of the Journal of Health Psychology, called the PACE trial ‘a text book example of bad science.’ Bruce Levin, a respected Columbia statistician called the PACE trial ‘the height of clinical amateurism.’ David Tuller, a Berkely lecturer in Journalism and Public Health described the study as ‘a sham; a fraud.’ Similar quotes from esteemed academics around the world form a landslide when one begins to pull at any loose thread of this argument. And yet, this is the study that has formed the backbone of orthodox treatment for ME in the UK for over a decade. These are the leading doctors in the field who Michael Fitzpatrick refers to in the Telegraph. A similar, but still ongoing, saga is a study named FITNET, led by Esther Crawley at Bristol University. In my own personal opinion, FITNET is even more flawed and disingenuous than the PACE trial. Esther Crawley has recently been awarded a £1.6m grant to study GET and CBT in children with Long Covid. Biomedical funding into Long Covid research has been given peanuts by comparison.

In February of 2015 the Institute of Medicine in the USA published a report entitled Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. The reports states that ME/CFS ” is a medical – not a psychiatric or psychological – illness”, and goes on to say that “This disease is characterized by profound fatigue, cognitive dysfunction, sleep abnormalities, autonomic manifestations, pain, and other symptoms that are made worse by exertion of any sort.” Compare this to Michael Fitzpatrick’s withering definition. It was a breakthrough in many was for the community to have such an influential body put down in print that the disease was even real. We were being recognised for the first time. The momentum was felt across the Atlantic. In 2017, NICE announced that they were going to revisit their guidelines on the use of GET for ME/CFS.

In November of last year, the draft guidelines were published. After three years spent scrutinising 1,500 peer reviewed scientific studies, a judgement call was made. There was no ambiguity. The draft guidelines stated that “there is NO evidence to support the use of GET as a treatment for ME/CFS, and due to reported harms from the ME community… it should not be offered as a treatment for this illness.” The guidelines continued, “There is no evidence that CBT is a cure for ME/CFS, and it should only be offered as a supportive therapy.” Everything that campaigners had been saying for decades finally had the support of the highest medical research authority in the land. Then of course, came the twist.

The day before the guidelines were due to be published in August, the Royal College of Physicians and the Royal College of Psychiatrists announced that they would be telling their members not to follow the guidelines. In effect, the revision of the guidelines was being blocked. NICE had no choice but to ‘pause’ the publication. Since it’s its inception, the purpose of NICE has been to dispassionately and objectively review all scientific evidence and advise practitioners on what therapies and protocols are safe and effective. They had never been challenged, undermined, or blocked in this way. Dr Andrew Goddard, president of the Royal College of Physicians said in an interview with The Guardian, ‘GET is not without some risk, but benefits quite a lot of people.’ Technically speaking, you could say the same thing about thalidomide. The devil was in the details. What was the scale of the risk? What was the scale of the benefit? Repeated patient surveys from all across Europe had shown that the majority of those who undertook GET deteriorated, whilst only a small minority reported an improvement. Such a woolly, nebulous statement from a man of his office was shocking.

In 2019, Dr Keith Geraghty of the University of Manchester published a paper that compared all available studies on the efficacy of GET and CBT (n=1,428) with all the available feedback surveys (n=16,665) from patients who had been given the therapies. To anyone who isn’t already initiate in this area, the results make for eye watering reading. Whilst the PACE trial found that GET helped between 8% – 22% of patients (depending on whose statistical analysis you believe), 55% –74% of those polled reported that Graded Exercise Therapy had made them worse. This was already well known in the ME community. But now that NICE had reviewed all the available evidence, their judgement was clear. Of all the studies that they looked at in favour of GET, totalling more than 250, the quality of evidence was categorised as either ‘low quality’ or ‘very low quality.’ Brian Hughes, professor of psychology at the National University of Ireland in Galway, and author of ‘Psychology in Crisis’ is a well known critic of the Wessely school. In a recent blog post he described the NICE evidence review as a ‘bloodbath’. However, as if ignoring the idea that a therapy might make you worse, Dr Alastair Miller, an adviser to the NICE panel and an advocate of Graded Exercise Therapy said ‘since there are no new therapies, there is no need to change the guidelines.’ In other words, a treatment that has been shown to be harmful is better than no treatment. Jesus wept.

I’m sure Dr Fitzpatrick is a nice person. He is the symptom after all, not the problem. But I believe he has harmed and offended thousands of people. Was my suffering worsened upon reading this article? Absolutely. I was devastated and deflated. The hope that keeps me going every day took a hammering. I’m sure that was the same for many. There is also clear evidence that this practitioner represents a danger to the many ME and Long Covid patients that he is likely to encounter in daily practice. He is determined that they have psychiatric problems that there is no evidence that they have. He is determined that they should be given therapies that have been shown to be harmful. He scoffs at the idea of evidence, and has clearly ignored the development of biomedical understanding in this field over the last two decades.

Confronting the establishment is an exhausting, quixotic task for a chronically ill patient. Like the looming presence Wordsworth describes in his poem The Prelude we exist perennially in the umbra of a twisted and outdated paradigm, that has the disturbing quality of shifting its form when challenged or scrutinised from any angle. It defiantly resists the passage of time, and self-righteously claims it is built upon logic and reason, despite failing every scientific test and refusing to answer grown up questions put by reasonable men and women. Occasionally, when we diligently chip away at it, it seems to lessen in size, and the shadow shrinks, allowing a chink of light and a ray of hope to pass. At other times, like the publishing of Dr Fitzpatrick’s article, or the blockage of the NICE guideline publication, it rears up and doubles in size, making us feel that we are back to square one. Who are we, anyway, the patients caught in the middle of this nonsense? We feel voiceless. We are at times made to feel outcast, maligned and despised.

In the end, after a roundtable discussion with all the concerned parties on October 19th, NICE opted to go ahead with publication of the new guidelines, despite the disgruntled Royal Colleges. It was a huge victory and vindication for ME patients. It underlined the fact that science is on the side of ME advocates, and ME advocates are on the side of science. Those who attacked us for lobbying were in fact themselves the poorly informed harassers. None of this could have happened if we had not rattled the cage. But this is just the beginning for us. This is just common sense prevailing – protecting patients from a dangerous therapy that is more likely to harm them than help them. Decades of lobbying just to get to this point, and always, always swimming against the tide.

The Wessely school have not given up, already publishing a paper and an article in the Daily Mail defending their ideas. Professor Brian Hughes believes they are suffering from denial and cognitive dissonance. They are unable to let go of therapies that they developed themselves, based on theories that they developed themselves, despite the fact that they have now been completely discredited. And so, the fight will continue. We don’t want to fight. We are exhausted, and want to get on with our lives.

The Dalai Lama once said that anger is never justified, but righteous indignation is sometimes necessary to remove injustice. Amaritya Sen, the Indian Nobel prize winning economist famously said that human beings have no definition for ‘justice’. Instead, he said, we must simply seek out injustice and remove it wherever we find it. That is all the ME community have ever tried to do. It’s hard to know how to react when I read articles like Dr Fitzpatrick’s. Should I just ignore it, and get on with my life, for the sake of my mental health and happiness? That is the advice of ME ‘activists’. Don’t get upset, don’t engage, lest you be branded a psychology denier and accused of online harassment. This is usually my approach. But then sometimes something in me snaps, and I think: if we don’t fight, nothing is going to change. Does this make me a militant? Actually, yes. Perhaps it does. Maybe I can give him that one. I am recently converted.