The greatest medical scandal of the 21st century

ME/CFS Scandal Explainer

A number of academics, experts, and journalists have characterised the treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) as a scandal, with George Monbiot going as far as calling it “the greatest medical scandal of the 21st-century”. This video provides an introduction and overview, highlighting key events in the story.

The transcript and references are available below.

Transcript

George Monbiot describes the treatment of Myalgic Encephalomyelitis as “the greatest medical scandal of the 21st century”, emphasising how it “has been maligned and misrepresented on an industrial scale” [1,2]. According to Monbiot, “this is about how the scientific and media establishment closed ranks around bad science, defending it from legitimate questioning and criticism” [3].

Myalgic Encephalomyelitis (ME), is a serious, long-term illness that can be profoundly disabling. It typically follows an infection, such as the Epstein-Barr virus or the flu. But it’s not simple post-illness fatigue; it’s a complex, multisystem disorder with a wide range of symptoms [4].

A key feature of the illness is that patients have an energy impairment and an abnormal response to exertion. The hallmark symptom is called post-exertional malaise, which means when patients exceed their available energy, they experience a worsening of symptoms and reduction in physical function. Patients often refer to this as a crash, which can last for days or even weeks, sometimes leading to a relapse and an increase in illness severity [5].

While the exact physiology remains unclear, there is a large body of evidence that demonstrates biological abnormalities in multiple systems, such as the nervous system, the immune system, and energy metabolism [6].

ME was recognised as a neurological disease by the World Health Organisation in 1969. However, in the late 1980s, an influential group of psychiatrists and researchers reframed ME as Chronic Fatigue Syndrome (CFS), a vague condition characterised by fatigue. They claimed there is no ongoing disease and argued that patients’ symptoms are caused by unhelpful thoughts and behaviours. Building on this belief, they developed psychological and exercise therapies that dominated care and became the only treatments recommended in medical guidelines around the world.

Over the last few years, though, major health agencies in the US and the UK have withdrawn these treatments because they are not effective, the research is flawed, and patients reported they were harmful.

Here are some of the key events that illustrate the scandal:

1955

The Royal Free Hospital in London is forced to close for several months after an outbreak of an unknown illness [7]. No pathogen is found but key investigators believe it is probably caused by a virus [8]. Dr. Melvin Ramsay, a consultant at the hospital, becomes the leading expert on the condition, which becomes known as Myalgic Encephalomyelitis [9].

The Royal Free Hospital and Dr. Melvin Ramsay

1969

The World Health Organisation (WHO) classifies ME as a distinct neurological disease. This classification remains valid today, and is important because it underscores that ME is not a psychological illness [10,11].

1970

Two Psychiatrists publish a damaging paper that revisits the Royal Free Outbreak. Without interviewing any patients, they conclude it was “mass hysteria” because the majority of people affected were women. The paper influences how patients are treated by doctors, and helps lay the groundwork for psychological treatments [12].

1986

After decades of research and clinical experience, Ramsay publishes the first definition of ME. He recognises that the most important feature of the illness is a unique form of fatigability, or worsening after activity, that must be present for a diagnosis. This abnormal response to exertion helps differentiate ME from other conditions and later becomes known as post-exertional malaise, the hallmark symptom of ME [13].

Ramsay warns that relapses can be caused by excessive physical or mental exertion, and recommends that patients stay within their limits [14].

He dismisses a psychological cause and points to evidence suggesting it could be linked to a persistent virus, an abnormal immune response, or mitochondrial dysfunction — all of which remain important areas of research today [14,15].

1988

In the United States, the Centers for Disease Control (CDC) respond to a number of outbreaks. They recognise that it’s not a new illness and it’s most commonly referred to as ME, but decide on a new name: Chronic Fatigue Syndrome [16]. Dr. Anthony Komaroff, who is part of the group that coins the name, later admits this was a “big mistake” [17].

“I think that was a big mistake because, the name, in my opinion, and the opinion of a lot of people, is it both trivialises and stigmatises the illness”

— Dr. Anthony Komaroff (Interview with The CDC)

1989

Just two years after seeing his first patients with ME, Dr. Simon Wessely publishes a new theory to explain and treat the condition.

He rejects the conventional view that patients have a poorly understood disease, and need to limit their activity to prevent deterioration. Instead, he argues that they have become unfit due to being inactive. They may have originally been ill with an infection, but have rested for too long, and experience symptoms when they try and resume activity. According to Wessely, patients mistake these symptoms for the original infection and think something is seriously wrong. As a result, they develop a fear of activity, and get trapped in a vicious circle of increasing avoidance and disability.

He recommends Cognitive Behavioral Therapy (CBT) to convince patients that symptoms are caused by inactivity, and a graded increase in exercise to restore their fitness [18].

Dr. Simon Wessely and his paper on the management of ME/CFS

1991

The Oxford criteria for diagnosing Chronic Fatigue Syndrome are published in the UK [19]. The authors are mostly psychiatrists, including some who become prominent figures in the research of the illness. The new criteria are not specific enough and don’t include worsening after activity — the hallmark symptom of ME. As a result, they basically identify people with unexplained fatigue. This becomes a major problem for research, as studies using the criteria can include people who don’t have ME, which dilutes the sample and skews the results. For example, while exercise improves health and function for many conditions, people with ME experience exercise intolerance, which means that exercise can actually make their symptoms worse. Despite this serious flaw, the criteria become popular in UK research, and distort the understanding of ME for the next few decades [20].

1993

Contrary to the WHO classification, Wessely successfully lobbies the UK government agency, now known as the Department of Work and Pensions, to not classify ME as a neurological disorder. He argues that the belief in a physical cause leads to poorer outcomes, and warns of an increase in cost to the department for disability benefits. In his view, the worst thing to do is tell patients to rest, and claiming benefits can often make them worse [21–24].

Simon Wessely. Letter to Mansel Aylward. The National Archives.

1996

In the UK, the Royal Colleges publish an influential report on Chronic Fatigue Syndrome. The authors are predominantly psychiatrists, including Wessely, who takes a lead role [25,26]. The report is heavily criticised for its psychiatric bias, as it dismisses a viral cause, ignores biomedical evidence, and places undue emphasis on psychological factors [27,28].

Despite insufficient evidence, the report endorses Graded Exercise Therapy and CBT as treatments. It also recommends that the term ME should no longer be used in research or clinical practice. This leads to the virtual disappearance of ME for the next decade [29].

“So farewell then ME and hello the Chronic Fatigue Syndrome the new preferred name for this illness which continues to baffle the medical profession.”

— Vernon Mann (ITN News)

1999

Wessely establishes the first NHS service for Chronic Fatigue Syndrome, which leads to a national model that is rolled out across the UK [30].

Around the same time, the Royal College of GPs and King’s College London, produce a training video on Chronic Fatigue Syndrome, which they also refer to as ME.

The video describes patients as “very frustrating” because you can get into arguments about the cause of their illness and the type of treatment they want. It downplays the severity, dismisses a viral cause, and claims that the illness is perpetuated by a fear of activity and excessive rest.

In one part of the video, a patient is advised to exercise even when they “feel rotten” and “absolutely exhausted”, which is potentially very harmful.

Overall, the video teaches an approach that invalidates the patient experience, damages the patient-doctor relationship, and risks worsening the patient’s condition [31-34].

2005

Sophia Mirza dies of severe ME. Prior to her death, Sophia had been wrongfully sectioned for refusing to attend a clinic that treats patients with Graded Exercise Therapy. The mistreatment during her stay results in a dramatic deterioration, and she never recovers [35-37].

“Sophia was committed to a psychiatric hospital and her family claim this is what led to her death. Sophia’s illness had been treated as a mental problem a common misconception with ME. Doctors decided she wasn’t improving, so the decision was made to section her. It’s actually hard to believe but they physically broke down her front door and forcibly removed Sophia into a psychiatric hospital where she was never actually treated for the underlying condition. Now the result of this inquest proves she was suffering from a chronic disease and not a mental illness. So hopefully someone will now sit up and listen.”

— Stacey Poole (ITV Meridian Tonight)

Sophia Mirza and her death certificate listing Chronic Fatigue Syndrome as the cause of death

2007

In the UK, the National Institute for Health and Care Excellence (NICE) publish a guideline for ME/CFS that recommends Graded Exercise Therapy and CBT [38]. The guideline is widely condemned by doctors, researchers, charities, and patient groups [39–43]. They point out a number of serious issues, such as the evidence being weak and based on a handful of small studies [40]. Serious questions are raised about the committee, with a large proportion having previously shown bias in favour of the psychological approach, including some with financial interests [41,42]. There is also major concern about the risk of harm, as surveys consistently report that Graded Exercise Therapy makes patients worse [43].

February 2011

The results of the controversial PACE trial are published. Costing £5 million, it is the largest trial ever conducted on ME/CFS, and the only medical trial to be part funded by the Department of Work and Pensions [44,45]. The authors claim the trial shows that Graded Exercise Therapy and CBT are effective, and in some cases the treatments can even lead to recovery. As a result, the trial has significant implications for patients, influencing treatment guidelines, and insurance policies around the world [46].

Despite this impact, the trial faces widespread criticism [47,48]. For example, Dr. Ron Davis, one of the world’s leading geneticists, says,

“I’m shocked that The Lancet published it… The PACE study has so many flaws and there are so many questions you’d want to ask about it that I don’t understand how it got through any kind of peer review.”

— Dr. Ron Davis (Trial by Error)

In fact, the trial is so flawed that it goes on to be used in textbooks and university seminars as a case study of bad research [49,50]. Serious concerns are raised but are dismissed, as can be heard in this interview with Richard Horton, the editor of The Lancet [51].

“Well we have been deluged with dozens of letters, raising serious objections to the conduct and interpretation of the study most recently a 43 page diatribe calling for the paper to be retracted…”

“One sees a fairly small, but highly organised, very vocal and very damaging group of individuals who have I would say have actually hijacked this agenda and distorted the debate so that it actually harms the overwhelming majority of patients”

— Richard Horton (ABC Radio)

PACE trial used in textbooks and seminars as a case study of bad research

July 2011

Following strong opposition to the PACE trial, the Science Media Centre (SMC) start a campaign in the media that portrays ME/CFS patients as dangerous activists who harass and threaten researchers [52].

Routinely used by every news organisation in the UK, the SMC provide journalists with expert information about science and have considerable influence over the way science is covered by the media. [53]. However, critics argue that the SMC spoon-feed information to reporters, who often fail to question the material or explore different points of view [54,55]. This is particularly concerning as the SMC have also been criticised by several academics and researchers for being biased in favour of government and industry [55].

A clear example of their bias is the active promotion and defence of the psychological approach to ME/CFS [55]. This is not surprising, given that Wessely, who has a vested interest in the research, holds significant influence within the organisation as both a founding member and a scientific advisor [30,56]. He also later joins the board of trustees [57,58].

The SMC begin their campaign by giving a story to the BBC about the abuse of researchers [52]. A document reveals their aim is to “engineer coverage” and “frame the narrative” of reporting on ME/CFS research. The follow-up is “huge,” with almost every newspaper and influential magazine covering the story in some way [52,59].

The articles sensationalise the behaviour of a few individuals, and portray legitimate criticism as an unjustified attack on science. Patients are depicted as misguided fanatics opposed to a psychological explanation of the illness or any involvement from psychiatry. They are likened to anti-vaxxers and animal rights extremists, and Wessely claims they are so dangerous he feels safer in Iraq and Afghanistan [60–63].

Wessely features in many articles, including the original story the SMC gave to the BBC, yet they fail to mention his connection to the organisation, a clear conflict of interest that should be disclosed.

The harassment narrative has a broad and lasting impact as it continues in the media over the next decade. It discredits patients, promotes prejudice, and garners support from other scientists — ultimately diverting attention away from valid concerns about research.

Media coverage following the story about harassment the SMC gave to the BBC

December 2011

Renowned Cancer Researcher and MP, Dr. Ian Gibson, explains why there is a reluctance to fund biomedical research into ME/CFS [64]:

“There’s, there’s a block that comes in, somewhere at high level, of people who are well connected, with the medical establishment, in London. Their defining the condition. I’m not going to mention the man who leads it, but there is one man that they don’t like, because, it’s felt that he runs the whole show.”

— Dr. Ian Gibson (BBC Radio Norfolk)

Just over a week later, a study reveals that delivering psychological treatments for ME/CFS can be challenging because patients don’t accept the rationale behind the approach. One supervisor commented that some nurses were so frustrated that they got angry at the patients. The nurses felt that patients should be grateful and follow their advice, but when they were resistant, it led to attitudes such as, “the bastards don’t want to get better” [65].

February 2015

In the United States, the Institute of Medicine, known for its rigorous and impartial reviews, publish a landmark report on the evidence base for ME/CFS. An expert panel examines over 9,000 studies and concludes that ME/CFS is a “serious, chronic, complex, and multisystem disease”; firmly stating it “is a medical — not a psychiatric or psychological — illness”.

They recognise that post-exertional malaise, the worsening of symptoms after physical or mental exertion, is a defining feature of the illness that helps distinguish it from other conditions. They make it essential for diagnosis in their new criteria, which are later adopted by the CDC.

The report marks a significant turning point, influencing guidelines and treatment recommendations around the world, as well as helping to reshape the understanding of the condition [66–68].

October 2015

The long term follow up results for the PACE trial are published. The authors acknowledge there is no difference between groups, which means patients did just as well with standard medical care as they did with Graded Exercise Therapy or CBT. The authors continue to argue that the treatments are effective even though there was no long-term benefit [69].

In support of the paper, the Science Media Centre run a press briefing and publish a single expert reaction from a colleague of the PACE authors [70,71]. Patients, experts, and charities criticise the results, but the media report on the treatments as a success [72,73].

PACE trial follow up paper shows no long-term benefit

2016

After Queen Mary University of London refused multiple Freedom of Information requests, a court orders them to release part of the PACE trial data to Alem Mathees, an Australian ME patient [74]. Alem had to complete a course of Graded Exercise Therapy and CBT to qualify for disability benefits, but became skeptical of their effectiveness after his health deteriorated following treatment [75].

During the tribunal, the University uses claims of harassment and a serious risk of violence to try and keep the data hidden, but these claims are found to be “grossly exaggerated”. The only actual evidence they are able to provide is that Trudie Chalder, an author of the PACE trial, was heckled during a seminar. Chalder acknowledges that while unpleasant things have been said, no threats have been made to the PACE researchers [76].

The long and unnecessary legal battle takes a huge toll on Alem’s health. The ordeal lasts over two years, and the excessive reading and writing contributes to a severe relapse. Alem never recovers, eventually becoming bedbound, sensitive to light and sound, and unable to read or speak. After many years, he remains in this state today, only managing to sit briefly to consume a liquid meal or use a portable toilet next to his bed [75,77].

Alem Mathees' fight for the PACE trial data severely impacted his health; he remains bedbound and extremely limited, even brief interactions with his family can worsen his condition.

May 2017

Merryn Crofts dies of Severe ME [78]. Merryn’s mum, Clare Norton, is very critical of the PACE trial and the NICE guideline. She strongly believes that if Merryn had received the advice to slow down and rest earlier, she might not have progressed into Severe ME [79]. Clare also spoke about the ‘torture’ of watching her daughter waste away and die from ME, all while doctors tried to insist her illness was psychological [80].

“It’s just like you’re banging your head against a brick wall, it’s awful. And all the time you can see you’re child just getting worse and worse. One doctor actually said I don’t believe in ME. And when I said well the World Health Organisation recognises it, it’s classified it as a neurological illness. And he was a neurologist. And he said well I don’t believe in it.”

— Clare Norton (Channel 5 News)

Merryn Crofts, who died of severe ME just 10 days after her 21st birthday

July 2017

In the United States, the CDC remove their recommendation for Graded Exercise Therapy and CBT. Losing the endorsement of the country’s leading health agency marks a major step forward in the rejection of the psychological approach [68].

CDC remove Graded Exercise Therapy and CBT — Stat

August 2017

Keith Geraghty publishes an analysis of multiple treatment surveys. Over 50% of the 6,000 respondents reported that Graded Exercise Therapy made their condition worse [81].

February 2018

Carol Monaghan leads the first of 3 debates about ME in the UK Parliament, including one about the PACE trial [82–84].

“I have seen scientists, writing in journals like this, Journal of Health Psychology, calling out the PACE trial. There is a huge amount of evidence, Mrs Rossendale, from the science community, from very eminent people, questioning the whole PACE trials, their methodology, the evidence they used, the way they treated the patients.”

— Sir Ed Davey MP

“One participant, in the original trial has contacted me: ‘I was assigned Graded Exercise Therapy. It never occurred to me, that it would actually make me more ill. Nor, did it occur to me, that decline would not be documented and that despite patients not recovering, (or in some cases worsening), they would publish that the treatment was successful. It was stressed, that I would only get better if I tried harder and even though the graded exercise was clearly making me worse, my struggle and pain was dismissed.’”

“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

March 2018

Using the data released by the tribunal, a re-analysis of the PACE trial reveals that the results were exaggerated. Partway through the original trial, the authors deviated from their published plan and lowered the thresholds they used to measure improvement and recovery. This had a dramatic effect on the results. For example, the original trial reported that the improvement rate for Graded Exercise Therapy was 61%. But when the data is re-analysed using the authors’ original criteria, the improvement rate falls to just 21% [85].

An earlier re-analysis found that one of the thresholds used to measure recovery was lowered to such an extent, that 13% of patients were already considered ‘recovered’ on a key measure before the trial had even started [86].

The new paper finds no evidence that Graded Exercise Therapy or CBT are effective, or that they lead to recovery, as previously claimed. If the authors had kept to their original plan, the PACE trial could not have been reported as a success.

The Science Media Centre try and discredit the paper by publishing a fact sheet for journalists. It describes PACE as a “good quality trial”, and attempts to diminish the credibility of papers critical of PACE by saying they are published in low impact factor journals [87].

PACE trial worthless — The Times

June 2018

Emma Shorter gives evidence in the Scottish Parliament and describes her experience of Graded Exercise Therapy [88].

“I had to walk and you had to increase walking by ten percent each week. And as I began to get sicker and sicker, I was told this is the moment where you push through and you get better. I started the clinic being able to walk about four minutes each day. I ended and I needed a wheelchair. I went back to my physio, I went back to my doctor and they said congratulations we’re so glad we helped you recover”

— Emma Shorter

Professor Jonathan Edwards also submits evidence and writes [89]:

“The patient community has been publicly vilified by the trial authors and colleagues but they have turned out to be right. They have identified a serious weakness in the quality of both science and peer review in psychological medicine.”

— Professor Jonathan Edwards

August 2018

David Tuller publishes a third version of his open letter, requesting an independent re-analysis of the PACE trial. The letter, signed by over 100 academics and 70 charities, highlights several major flaws and unacceptable errors, but the Lancet fails to take any action [90].

October 2021

NICE publish a new guideline for ME/CFS [91]. Following a comprehensive review, they find serious flaws in the evidence for Graded Exercise Therapy and CBT [92]. A lot of the research is downgraded because the study design was not blinded and relied on patient questionnaires to measure the effectiveness of treatments. Blinding is important in research because it hides whether a patient is receiving treatment, which reduces bias and improves reliability. For example, when patients are aware they are receiving treatment, they might report improvements simply because they expect to feel better. In studies of Graded Exercise Therapy and CBT though, blinding is not possible, so to ensure reliability, the outcome measures have to be objective, such as activity levels or fitness [93]. However, when objective measures are used in studies of Graded Exercise Therapy and CBT, they fail to show any meaningful benefit [92].

Research that used diagnostic criteria that did not require Post-Exertional Malaise is also downgraded. This is because it could include patients with other illnesses who may respond differently to treatments [92].

After the review, NICE finds all the evidence for Graded Exercise Therapy and CBT is of ‘Low’, and ‘Very Low’ quality. There is also considerable evidence of harm from patient surveys, as well as concerns about trial safety data due to poor reporting [92].

In the end, they conclude that there is no evidence that Graded Exercise Therapy or CBT are effective and that Graded Exercise Therapy is harmful. As a result, the new guideline makes it clear that Graded Exercise Therapy should no longer be used, and that CBT should only be offered to help patients cope with the effects of their illness [91,92].

NICE scraps Graded Exercise Therapy — The Guardian

Conclusion

Thirty years after it was initially proposed, major health agencies have rejected the psychological approach. Patients and advocates who criticised the research have been vindicated; they were right all along.

But the impact has been devastating. Graded Exercise Therapy has harmed thousands of patients, many who could previously walk ended up needing wheelchairs, or have become bedbound.

It has led to widespread misunderstanding. According to a 2021 survey, 80% of doctors wrongly believe that ME/CFS is either partly or entirely psychological [94].

It has added to the stigma, promoting the view that ME/CFS can be cured solely by a patient’s attitude and effort.

Doctors often blame patients for not helping themselves, are dismissive, and deny support. In 2023, The Times reported that the Department of Health told the NHS to ‘stop blaming ME patients for being ill’, and warned that ‘ME patients risk dying of starvation’ under NHS care [95,96].

Patients that refused treatment have been denied benefits and insurance claims. Some have even been sectioned, and parents of children with ME/CFS have faced child protection proceedings [97–99].

Millions of pounds have been wasted on flawed research and inappropriate treatments, while biomedical research has been held back. Despite ME/CFS being common and around for decades, patients have no effective treatments, and no drugs are expected to become available in the near future.

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