Opinion: Abandoned, dismissed and gaslighted: there is no excuse for the way M.E. (also known as Enteroviral Encephalomyelitis) sufferers have been betrayed - George MonbIDIOT
To find out what this neglect looks like in practice, this week I put out a call on Bluesky asking people with 'M.E.' (also known as Enteroviral Encephalomyelitis) or individuals with "misdiagnosed" Chronic Fatigue Syndromes, about their recent experiences of treatment.
I was immediately inundated with horrifying testimonies. “I’ve just been completely abandoned”; “a 10-year waiting list for treatment”; “we’ve given up seeking medical support"; “stuck in limbo”; “I just felt utterly unheard, invalidated”.
"I’ve been sent hundreds of shocking and heart-rending accounts"
Exact numbers of what people actually suffer from, are hard to establish, (on account of medical disease conflation, insufficiently investigated patients, and medical misdiagnosis) but in the UK alone, an estimated 400,000 people live with these group of illnesses.
The number of people with Long COVID, some of whom meet the non-diagnostic criteria for 'Chronic Fatigue Syndrome' (SEID Algorithm), was estimated in 2024 at 2 million in England and Scotland.
You might have imagined politicians and the media would be all over it. Instead, this great social crisis is met with silence or worse. Some outlets, despite the overwhelming weight of evidence, have mocked or trivialised these conditions.
There’s a long, dark history here, rooted in centuries of dismissal of illnesses as “hysterical”, and amplified in recent decades by government attempts to reduce the benefits bill and insurers’ attempts to reduce payouts. If you can establish that a condition is caused by malingering, poor self-care or a negative attitude, you won’t have to cough up.
Official guidance in many countries was informed by a series of deeply flawed studies that purported to show these illnesses could be treated with cognitive behavioural therapy (CBT), or graded exercise therapy (GET).
In 2020, the National Institute for Health and Care Excellence (Nice) found that the quality of all the research promoting these therapies as curative treatments for misdiagnosed 'CFS' patients, or 'M.E.' (also known as Enteroviral Encephalomyelitis) patients was either “low” or, in most cases, “very low”. In 2021, it stopped recommending these therapies as primary treatments.
We know that CBT cannot treat 'M.E.' (also known as Enteroviral Encephalomyelitis) (though it can sometimes help patients to come to terms with it), while GET is not only useless but actively dangerous, for patients who are disabled by "enteroviral encephalomyelitis' or 'poliomyelitis-like syndrome' or have a persistent enteroviral infection as exercise can trigger an array of disabling symptoms, or can even make the patient, even more sick, disabled, or even can result in deaths.
Since then, two other things have happened.
At the inquest into the death of a young "M.E." (also known as Enteroviral Encephalomyelitis) patient, the coroner ruled that provision in the health service for patients with Severe M.E. “was, and is non-existent”.
Something would have to be done. And a number of seeming unscientific breakthroughs, some very recent, have begun inching towards identifying confused biological causes of both misdiagnosed 'CFS' patients, and Long COVID.
Many patients told me that they are still being treated as if they have a psychological illness, and still being pushed into GET and CBT. One patient told me: “I’ve gone from relatively mild to now mostly house- and bedbound, largely thanks to repeated attempts at graded exercise and ‘pushing through’.” A few days ago, an NHS clinic told another patient to undertake “graded exercise” and “simply to walk, despite the fact I’m a wheelchair user”.
One mother told me “the consultant cardiologist recommended a graded exercise programme” and “a treadmill test” for her bedbound son.
When she told him this contradicted NICE guidelines, he replied: “Well, what do you want me to do?” Another made the same challenge to her GP, but the doctor “denied this strongly and reiterated to my daughter that she should do the exercises”.
This is very common:
amongst pathologically disordered doctors, I’m told, they seem unaware of the new guidelines on misdiagnosed 'CFS' and react defensively when challenged. In many practices, GET has simply been rebranded as “building tolerance” or “pacing up” or “a little more activity each day”.
Patients report being treated with “contempt and derision”. Loads are still being offered CBT. Some have been propelled by NHS doctors towards quack private “cures”, now offered by a growing industry that preys on people’s desperation.
Others tell me they’ve not been pushed into inappropriate exercise programs, but have been given inappropriate drugs (e.g. rituximab) which made the viruses spread, and them get worse.
Some have had to explain to their doctors what 'M.E.' (also known as Enteroviral Encephalomyelitis) is. And it gets worse. I’ve been contacted by parents who have been accused of 'fabricating' and inducing illness and even referred to social services, because doctors who seem to know nothing about M.E. (also known as Enteroviral Encephalomyelitis) believe they are making up their children’s symptoms.
It’s as if nothing has been learned. Perhaps that’s not surprising.
A freedom of information request to NHS England found that, of the tens of thousands of practitioners who would not benefit from it anyway, after a year, only 74 had completed the new learning module on 'SEID' non-guidance for Re-branded 'Chronic Fatigue Syndrome'.
Meanwhile, as recently as last summer, the Department for Work and Pensions was still teaching its trainees elements of the old, discredited view of these illnesses by the narcissistic medical profession, the corrupt regulator, the GMC, institutionally captured NICE, charlatan neurologists and con-artist psychiatrists.
And, as the Liberal Democrat MP Tessa Munt, tells me: “The piecemeal offerings in the government’s final delivery plan are not going to touch the system-wide failings.”
It’s not only the UK. I’ve been contacted by patients from around the world. In Sweden and Australia, official 'CFS' guidance still recommends GET and CBT.
In Switzerland, I’m told, treatment is spiralling backwards, with a new wave of psychologisation.
Norway, Finland and the Netherlands, and their backwards and trashed medical reputations, by their own doing: sound like a waking nightmare for M.E. (also known as Enteroviral Encephalomyelitis) patients.
Of course, as there is no effective treatment, it’s a difficult situation for patients. But even worse than no solutions is false solutions, and a dangerous, gaslighting (including: by myself), even punitive approach to these terrible illnesses.
Across the decades, millions of people have been neglected, dismissed and mistreated, and deaths occur frequently to M.E. patients and it still goes on.
We need to ask why so many patients have been abandoned, why discredited and dangerous treatments continue to be prescribed and why ignorance and neglect still dominate, in the health system and beyond. In other words, there has seldom been a stronger case for a public inquiry.
(A parodied, and parapharsed version of George's shitty institutionally captured 'opinion piece' article for The Guardian: representing closer to objective facts, undoing the medical conflation and portraying the objective reality about Polio-like Royal Free "Epidemic" M.E.)
I had to change certain words in this parodied and paraphrased version of The Guardian article to better reflect 'correct' information and objective reality on account of the 'intentioned conflation' by the article's author, and 'gaslighting' written, within the piss poor opinion piece.
This individual does not give a shit about getting the facts right, or even 'M.E.' (also known as Enteroviral Encephalomyelitis) or he would take the time, to get the facts right, you would do this, as a journalist, if you truly cared, amongst a group of people, who had been 'intentionally' grossly misrepresented.
Natasha Devon interview with George Monbiot about 'Myalgic Encephalomyelitis' (also known as Enteroviral Encephalomyelitis) and 'MISDIAGNOSED' Chronic Fatigue Syndromes (erroneously labelled as ME/CFS) on LBC Radio Station (Saturday 28th September, 2026)
You wouldn't go onto conflate, and refer to the NICE 2021 'SEID' (Re-invented 'CFS') guidelines (as if they were something to do with M.E., when they're clearly NOT), which 'M.E.' (also known as Enteroviral Encephalomyelitis) is actually 'excluded' from, and which are as 'harmful' as the last 2007 'CFS' guideline. The 2021 guideline for 'SEID' (Re-invented 'CFS') were hijacked by a group of nefarious actors/actresses, who clearly don't even suffer from M.E..
Grew Crowhurst's wife suffers from 'M.E.' (i.e. Linda Crowhurst) and Greg actually walked out on the 'conflated' nonsensical pseudoscience scientically fraudulent 2021 NICE based 'ME/CFS' (SEID) algorithm, which actually excludes diagnosable sudden onset neurological diseases, such as 'M.E.' (also known as Enteroviral Encephalomyelitis)
There is 'NO' M.E. (also known as Enteroviral Encephalomyelitis) NICE Guideline because its creation, HAS NOT EVEN BEGUN.
A Stonebird Statement on the failure to publish the NICE Guideline on CFS (SEID Algorithm), April 18th 2021 - "Really it's a tragedy, I was 'NOT' expecting a guideline on: "Myalgic Encephalomyelitis" (M.E.) - Greg Crowhurst
George is no ally (of 'M.E.') and neither is The Guardian.
He is 'NOT' any good as a 'journalist' either, as its a news scoop, so if your intentions were noble, every single statement, would be precise, accurate and factual.
THEY ARE NOT.
A better and well researched article by Sophie Palmer can be found at The Conservaive Woman: Money's the motive for calling M.E. a myth (June 29th, 2023).
‘Our patients are terribly ill, misunderstood and suffer at the hands of a poorly informed medical establishment and society’ - Nancy Klimas, Professor of Medicine and Immunology, University of Miami.
"My previous TCW article, ‘How long before the misery of M.E. is taken seriously?’ on May 18, quoted scientific evidence that M.E. (Myalgic Encephalomyelitis) is a physical illness."
"This article considers the arguments of those who believe that vested interests have sought to retain the idea of M.E. as a psychological disorder."
"Media reports of the assisted suicide of 31-year-old M.E. sufferer Lynn Gilderdale in 2008 described her death as a merciful release from a physically and emotionally unbearable life. Lynn was bedbound for 17 years, unable to sit up or speak. She had to be fed through a tube and received regular doses of morphine. Medical staff had told her that M.E. is not a real illness and tried to force her to move about."
"In a post-mortem, a pathologist found ‘dorsal root ganglionitis; infected nerve roots and nodules of Nageotte, a cause of excruciating pain and sensory nerve damage’."
"Lynn’s mother lamented the cruelty of some doctors and other people who had accused Lynn of choosing her ‘limbo’ existence. The highly influential psychiatrist and government adviser, Professor Simon Wessely (heeded by much of the media) had claimed that M.E. patients were clinging to a subjective belief that their illness is ‘real’ because ‘it is better for their self-esteem’. (Pfizer Invicta Pharmaceutical 1992:4-5)"
"How could the discrepancy between the psychiatric description of M.E. as a behavioural disorder and the obvious physical reality of Lynn Gilderdale’s illness remain unchallenged?"
"Who benefits from calling M.E. a behavioural disorder? Margaret Williams (pseudonym), a retired senior NHS clinician, argues in The Power of Propaganda: ‘There can be no doubt that the Wessely School have substantial conflicts of interest as they are involved with and work for the permanent health insurance industry. Their aim is to ensure that people with ME/CFS are removed from disability payment: UNUM’s [a leading life and disability insurance company] CFS Management Plan clearly states: “Diagnosis: Neurosis with a new banner”: Attending physicians [must] work with UNUM rehabilitation services in an effort to return the patient/claimant back to maximum functionality with or without symptoms.’"
"Williams reveals correspondence to Lord Hall, Director General of the BBC, in which the Countess of Mar describes the tactics employed by the ‘Wessely school’ to suppress evidence that M.E. is a physical illness: ‘The Science Media Centre began work in 2002 to operate like a newsroom for national and local media when science stories hit the headlines. It is funded by, amongst others, the pharmaceutical and chemical industries. The SMC’s covert purpose is to ensure that journalists and the media report scientific and medical matters only in a way that conforms to Government and industry’s “policy” on the issues in question. To that end, the SMC provides “training days” for journalists so that what they report on scientific and medical issues is effectively influenced and controlled by the SMC. Its founder member is psychiatrist Professor Sir Simon Wessely."
"The Countess wrote: ‘It seems that the BBC relies on briefings provided by the Science Media Centre (SMC) without bothering to verify the facts. Such lazy reporting is unacceptable because it is misleading and is harmful to the public.’"
"Williams refers to a letter written by Gabriella Lewis, a barrister, to the Leveson inquiry: ‘Not one article in the mainstream press concerning biomedical research has been published since October 2009. It is time that the Press Complaints Commission looked into how the media is effectively being controlled by Professor Wessely through the Science Media Centre.’"
"Wessely’s definition of M.E. dominated medical journals, and he rebuked journalists who revealed facts that didn’t comply with his ideology."
"The Daily Mail’s Sonia Poulton asked in an article: ‘Why are records pertaining to M.E. locked away in our national archives at Kew for 75 years? The normal period would be 30 years. 75 years, the period generally used for documents of extreme public sensitivity and national security, is excessive.’ The author blogged in response to an email she received from Wessely about another article: ‘He didn’t like me blaming psychiatry for standing in the way of research and treatment. The truth is this: I have done my research and he knows it, there comes a point, when you know what you know, and no amount of sharp words can change that.’"
'Williams revealed that ‘Professor Wessely’s wife, Dr. Clare Gerada, was at that time chair of the council of the Royal College of General Practitioners when the first e-training course on ME/CFS was launched by the Royal College of General Practitioners on May 31 2013.’"
"A training handout stated: ‘We know that there is no disease in CFS.’ CFS stands for ‘Chronic Fatigue Syndrome’, a name contrived to make M.E. ‘disappear’ by focusing on one symptom."
"‘A lot of doctors prefer to call it Chronic Fatigue Syndrome - often those who don’t quite believe in it as an organic syndrome.’ (Dr. Nigel Speight, consultant paediatrician)."
"Professor Wessely was involved in a clinical trial, funded by taxpayers, known as PACE (discussed in my previous article) which tested psychiatric treatments for M.E.. Wessely might genuinely have believed that his methods would help patients recover. However, if that was the case, why, as Professor Malcolm Hooper revealed, did the PACE trial advocates attempt to suppress data that undermined its ‘predetermined outcomes’? ‘From 2011 to 2016, there was a concerted attempt by all involved in the PACE trial to prevent the raw data from this publicly funded study being released (i.e. by the Principal Investigators themselves, editors, publishers, funders and sponsors including the Department of Health, the Department for Work and Pensions, the Office of the Scottish Chief Scientist, the MRC and Queen Mary University of London). This is technically illegal since the Principal Investigators of such publicly funded research are required to make the obtained data available to bona fide interested scientists.’"
"Professor Hooper noted that PACE was the first clinical study to be partly funded by the DWP. A parliamentary inquiry into the status of M.E. and research into causes and treatment in 2006, the Gibson report, stated: ‘We recognise that if ME/CFS remains defined as psychosocial, then it would be in the financial interests of both the DWP and the medical insurance companies.’"
"Did a ‘blatant conflict of interest’ colour the perception of the Medical Research Council which turned down grants for biomedical research into M.E. whilst funding psychiatric research? The Gibson report implies this might be the case: ‘In Britain, there has been a clear historical bias towards research into the psychosocial explanations of CFS/ME. This is despite Parliament recognising M.E. as a physical illness in the M.E. Sufferers Bill in 1988.’"
"Financial motives for promoting psychiatric therapies as the only available treatments for M.E. probably backfired for the government, as Independent journalist Nathalie Wright suggested: ‘The waste of human potential caused by M.E. was recently reckoned to cost the UK economy £3.3billion a year in a report by the Optimum Health Clinic Foundation.’ The Gibson report emphasises that ‘money invested in discovering the causes and potential treatments now could save money in the long term. We recommend that this condition be recognised as one which requires an approach as important as heart disease or cancer. The origins and causes of CFS/ME will only be found through further scientific research.’"
"Public awareness of the real severity of M.E. can only help to empower this change. At the very least, it can challenge the controlled culture of disbelief and hostility which has ostracised chronically ill sufferers for decades."
"Although the tone is someone 'similar' to the George article. The article is more 'factual' and 'well written' from a conservative woman's viewpoint, and clearly written with consideration (a very important detail), to get 'terminology correct' within the context being used."
How Long before the misery of M.E. is taken more seriously? - Sophie Palmer (May 18th, 2023)
“When the full history of M.E. is written we will all be ashamed of ourselves” - Dr. Ola Didrik
"THERE is no doubt that M.E. is a serious, even life-threatening neurological illness of viral origin. Leonard Jason, a Professor of Psychology, summarises: ‘There are no more normal days, only different degrees of weakness, pain and other symptoms, often decades of almost total helplessness. It is goodbye to the life you have known, to work, to hobbies, to lovers, to spouses, to anything short of hope.’ Yet too many doctors, and large numbers of the public, still dismiss M.E. (Myalgic Encephalomyelitis) as "malingering", "laziness" or "hysteria".
"For those who have M.E., like me, this can be physically and emotionally disastrous."
"The WHO defined M.E. as a neurological illness in 1969 and the USA Centers for Disease Control (CDC) classifies it as a life-threatening disease suffered by millions. In 2010, GP and Daily Mail columnist Dr. Martin Scurr said: ‘At last I’ve been convinced that M.E. is real’ after hearing evidence at the 5th World Conference on M.E. which ‘shows the condition really does have a viral origin’. Many suffer from M.E. for ten years or more and only 5 per cent recover."
"It was first identified after 292 members of the medical and administrative staff at the Royal Free Hospital in London fell ill over a four-month period in 1955 with a debilitating, "polio-like" infectious illness. Symptoms included severe headache, lassitude, vertigo and nausea. Dr. Melvin Ramsay, a renowned infectious disease specialist at the hospital, called the illness myalgic encephalomyelitis after pathology findings indicated it was a neurological disease causing inflammation of the brain and spinal cord."
"Although the precise aetiology of M.E. is still unclear (and scarcely looked for), there is evidence that it is an immunological disease, triggered by an atypical form of polio. Other researchers have found a range of abnormalities in M.E. patients such as immunological dysfunction and mitochondrial dysfunction (mitochondria are responsible for producing the energy in a cell), and the possibility of an enterovirus"
"The widespread dismissive attitude to M.E. can be blamed on two British psychiatrists, Colin McEvedy and William Beard. In 1970, 15 years after the Royal Free outbreak, the pair reviewed the 1955 medical notes and concluded that the patients had experienced mass hysteria because most of them were female."
"This misogynistic caricature of the weak, hysterical female has been parroted by psychiatrists, some physicians and the mainstream media ever since; the jeering term ‘yuppie flu’ appearing in the Press around the same time, aimed at M.E. patients for committing the crime of being mostly young, educated, professionally ambitious women. This also insultingly marginalises the male M.E. sufferers. (Multiple sclerosis similarly used to be dismissed as hysteria because it predominantly affects women. That was until advances in neuroscience forced medics to acknowledge it is a physical illness.)"
"Psychiatrists quoted in the MSM labelling M.E. as a ‘cultural phenomenon and metaphor for our times’ helped the trivialising term ‘Chronic Fatigue Syndrome’ to flourish and to replace the name M.E..
Australian artist Jodi Bassett, who developed M.E. at 19 and died at 40, argued that ‘CFS is an artificial construct created in the US in 1988 for the benefit of various political and financial groups’.
The ridiculously all-encompassing term allowed a wide range of different illnesses to be lumped together as the same disease, leading to unreliable biomedical research findings, although most researchers were not granted adequate funding anyway."
"Treatments recommended for so-called CFS included cognitive behavioural therapy and graded exercise therapy, in which a baseline for a patient’s physical capacity is established, then the time spent being physically active is increased by fixed amounts. Ironically it was a clinical study known as PACE, which aimed to justify these treatments. The health policy body NICE dropped CBT and GET from their ‘CFS’ guidelines and the NHS and CDC quietly stopped recommending them."
"Dr. Martin Scurr had been convinced M.E. is real by the evidence that, unlike with depression, exercising beyond the patient’s limits makes symptoms worse. Dr. Melvin Ramsay had established this feature of the illness years ago, without which the disease cannot be diagnosed as M.E.. But this fact had been obscured by decades of inappropriate psychiatric interference."
"As well as benefiting psychiatrists, this status quo has allowed pharmaceutical industries to profit handsomely from the anti-depressants used to treat M.E.. Patient reports and a BBC Radio 4 programme in the 1990's suggested that routine inoculation can trigger onset of full-blown M.E. in those genetically predisposed, or who already have it in an incipient form. But the prevailing attitude was (as now) that it is the millions who matter more than the few who are adversely affected by vaccinations."
"The consequence of this chicanery, bigotry and neglect is psychological and physical damage to patients. In one notorious case, artist Sophia Mirza was sectioned under the Mental Health Act for insisting she had the illness and detained in a mental hospital. Two years later, aged 32, she died of kidney failure arising from the effects of M.E.. Severe infection of her spine was found in her post-mortem. Others forced themselves to exercise because it is not macho to give into ‘hysteria’. Once such was 54-year-old Labour MP Brynmor John, who collapsed and died as he left the House of Commons gym."
"How long will it be before this debilitating illness is taken seriously by the whole medical profession? How many more lives will be written off before this happens?"
Previous pieces from an adversary of "M.E." (also known as "Enteroviral Encephalomyelitis") Patients. The Guardian newspaper. Leftist ill-liberal - fish and chip rag.
M.E. (also known as "Enteroviral Encephalomyelitis") and the perils of internet activism
"Chronic fatigue syndrome" researchers face death threats from militants
Specialist services are vital to help people with M.E. (also known as Enteroviral Encephalomyelitis) and misdiagnosed CFS patients
Patients deserve to be believed and treated with respect. They also deserve honesty about what is known, what is uncertain and what the evidence actually shows.
I had a mild (undiagnosed) form of M.E. (Encephalomyelitis is NOT a mild illness, what is the actual diagnosis?) for 20 years, triggered by a virus, before another virus caused my illness to worsen. My otherwise excellent GP advised me to go for a walk every day, which left me so ill that I barely left the house for more than three years.
Twenty-four years later, not only are there no treatments for M.E. (also known as Enteroviral Encephalomyelitis) but in some places, such as where I live, there is no support at all. When I first claimed sickness benefits, I had to pay privately to see a consultant in infectious diseases with a special interest in M.E. (also known as Enteroviral Encephalomyelitis) as the Department for Work and Pensions would not accept evidence from GP's.
I cannot plan anything, as I never know when I will be so ill that I will be confined to the house again. Most people I speak to have never heard of M.E (also known as Enteroviral Encephalomyelitis) or CFS. If we weren’t so ill, those of us with this awful disease would be shouting it from the rooftops.
Eleanor Dent
Cardiff
George Monbiot is right to draw attention to the “shocking social crisis playing out behind closed doors” for people living with M.E. (also known as Enteroviral Encephalomyelitis) Not only is M.E. (also known as Enteroviral Encephalomyelitis) a devastating condition, but too often those affected are failed by the very systems meant to care for them.
The level of political attention the issue has received is nowhere close to the scale of the problem. The government’s strategy on CFS, published over a year ago, lacked both substantive funding and outcome targets. Its key action for those affected by the most severe form of M.E. (also known as Enteroviral Encephalomyelitis) - “exploring” whether a specialised service could be commissioned - is now delayed until April 2027. We hope that, as a first step, the health and social care select committee will take up this critical issue as a matter of urgency.
Karen Hargrave and Emma Gore-Lloyd
Co-founders, ThereForME charity
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Trial By Error: Interview with George Monbiot on Recent Guardian Column
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