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Timeline History of Myalgic Encephalomyelitis (M.E)


"A work in progress to understand the historical timelines in regards to the ongoing ME scandal. This
timeline aims to document the entire history of Myalgic Encephalomyelitis (ME) including the biomedical
findings, the rise of the “Wessely School” psychiatrists & its acolytes, and the role and influence of the
pycho-social model and the private insurance industry in the history of this disease in their malignant,
ongoing attempt to reclassify the documented organic neurological disease ME incorrectly as psych and
idiopathic fatigue, in order to deny private insurance & welfare payments. Also diverting research funds
away from biomedical research towards their own psych studies that promote the use of CBT
(cognitive behavioural therapy) and GET (Graded Exercise Therapy), despite evidence of their harm. It’s
important to note that the Wessely School members are often employed by private insurance industry
and government departments, helping to deny claims of disability to end support. This conflict of
interest is often completely ignored.

The Wessely School influence has led directly to 4 decades of stigma, medical neglect and lack of
biomedical research funding and denial of medical support to patients with ME, painting seriously ill
patients as malingerers, activists and militants for daring to complain of the harms. This gross
institutional bias against patients has left patients stigmatised and medically neglected leaving millions
around the world suffering a extremely debilitating and challenging disease with no help or support.
The information in this timeline has been gathered from many sources in the public domain either from
public and from Freedom of Information requests and each entry has a link back to a source. The most
important sources are listed at the bottom of this timeline. This timeline was only possible due to the
dedicated work and efforts of other advocates before me, that has sought to record the history. I
created this timeline to make it easier for people to understand the complex history and politics
shaping the narrative today. My hope is this will be a resource for advocates to raise awareness and
more so a resource for investigative journalists wanting to expose this ongoing scandal in more detail.
ME is not “mysterious”, “psychological”, or “fatigue”, despite efforts to spread this misinformation by a
small group of influential psychiatrists in the U.K. ME is a grossly underfunded neurological disease for
its disease burden and costs to human life and the economy. It’s often misunderstood and downplayed
and carries a huge stigma, largely created by the psych lobby itself and inherent misogyny in medicine.
Patients have been treated horrendously with systematic institutional prejudice and in some cases
outright abuse, leaving millions around the world harmed and pushed into long disability and without
access to appropriate medical care, testing, advice or treatments. The most severe being completely
abandoned by medicine and left to rot. Many dying of medical ignorance and wilful neglect based on
this horrific prejudice against patients.

I will let the timeline speak for itself. We need to bust the ME scandal wide open. Just like the Post
Office scandal has been. So far no documentaries have been made looking in depth into the dark
history of #Myalgic Encephalomyelitis & the role of Private insurance, governments & the
WesselySchool psychiatrists. "Last updated: Feb 2024 by @DressFor_ME


Historical M.E. Timeline

Several descriptions of illness resembling those of ME have been reported in the medical
literature for at least two hundred years.

1869 Neurologist George Miller Beard popularised the concept of neurasthenia. It was generally
triggered by an infection and it was described as a "...condition of nervous exhaustion,
characterised by undue fatigue on [the] slightest exertion, both physical and mental... the chief
symptoms are headache, gastrointestinal disturbances, and subjective sensations of all kinds.”

1910 A non-paralytic form of polio was described which differed from the paralytic form only in
respect of the degree of weakness It was associated with “paresis” (transient paralysis or
muscle weakness) usually accompanied polio epidemics and was generally referred to as
“atypical” or “abortive” polio.
1930 List of known outbreaks related to ME

1934 Alexander Gilliam described an illness that resembled poliomyelitis, interviewing patients &
reviewing records of one of several clusters which had occurred in Los Angeles, United States in
1934. The Los Angeles County Hospital outbreak included all or most of its nurses and doctors.
Gilliam called the outbreak "atypical poliomyelitis" & described the symptoms as: rapid muscle
weakness, vasomotor instability, clonic twitches and cramps, ataxia, severe pain (usually
aggravated by exercise), neck and back stiffness, menstrual disturbance & dominant sensory

1951 Behavioural medicine influenced by Talcott Parsons’ The Social System, 1951, and his work
regarding “the sick role”. Hugely influential in ableist attitudes to sickness and disability and the
rise of these attitudes in psychology and medicine.

1955 Royal Free outbreak. This outbreak was significant as it led to research and naming of the

After the Royal Free Hospital outbreak, a disorder with similar symptoms was found among the
general population and the epidemic form came to be considered the exception. Pathology
findings, from both monkeys intentionally infected with biological fluids from patients and from
rare human casualties, led to the conclusion that the disorder was caused by inflammation of the
brain and the spinal cord, particularly the afferent nerve roots, perhaps with neuroimmune
etiology. Ref: Royal Free disease: perplexity continues BMJ 294 7/2/87 & MEpedia & also

referenced here

1956 M.E. was first defined in an editorial published in the Lancet in 1956 which discussed several
epidemic outbreaks of prior years.
1961 Price JL. Myalgic encephalomyelitis. Lancet. 8th Apr 1961;1(7180):737–738. [PubMed] �
1969 Myalgic encephalomyelitis first classified as a neurological disease by the World Health
Organization. ICD-8 classification manual published in 1969. Myalgic encephalomyelitis was given
ICD-8 code 323, and grouped with the other forms of encephalomyelitis under the Diseases of
the Nervous System section.

1970 McEvedy & Beard wrote a paper claiming that The Royal Free disease was down to Mass
Hysteria, with no evidence to support their claim & no examination of those involved, but
decided it was hysteria simply because most of the patients were women. Times Magazine

1970 BMJ response to Beard/McEvedy's January 1970 'Reconsideration'. Authors are Compston,
Dimsdale, Ramsay and Richardson. All four authors were at the RFH at the time - unlike Beard or
McEvedy. “Though the majority of laboratory tests proved negative qualitative changes in the
morphology of lymphocytes in a substantial proportion of patients were observed. However, it is
chiefly on clinical grounds that we base our belief that the outbreak was organic in origin. The
clinical picture included fever (89%), clear cut objective neurological signs such as ocular palsy
(43%), facial palsy (19%), and lymphadenopathy (79%), which disappeared as the illness
passed.” BMJ Feb 1970
1976 ME Association founded �
1977 Ninth revision of WHO classification, the ICD-9 entry for Myalgic Encephalomyelitis uses code
323.9 and remains a disease of the nervous system, along with the other forms of

1978 A symposium held at the Royal Society of Medicine (RSM) concluded that epidemic myalgic
encephalomyelitis was a distinct disease entity with a clear organic basis. https://

1984 Discussion of long term sequelae of enteroviruses beyond Polio. Using the terms benign myalgic
encephalomyelitis (BME) vs epidemic neuromyasthenia (EN). Characteristic clinical features of
BME are headache, myalgia, lymphadenopathy, mild fever, and various neurological symptoms
including cranial nerve palsies and transient paraesthesiae.' A relatively constant complaint is
extreme exhaustion brought on by slight physical effort and often associated with emotional
lability and failure to concentrate. Jan 84

1984 Lake Tahoe Outbreak �
1985 Interim report on M.E. Research - Experimental Pathology Immunopathology Section June 1985
Research on persistent IgM Coxsackie antibodies who have been treated with IgG with significant
1986 The definitive description of ME. 1986 AM Ramsay. �
1987 Article: A Working Model of the Explanation of Muscular Fatigue in Post Viral Syndrome by
Doctor David Smith “A phosphate nuclear magnetic resonance machine (PNMR) has
demonstrated that there is probably a blockage in the cycle of the production of energy
because of enzyme changes or blockage within the mitochondnal structure, and we can show
that there is an inefficiency of production of power and there has been evidence of an early
build-up of acids in the muscles of people with the Post Viral Syndrome.” “It can now be proved
that there is a virus at the bottom of this. Furthermore, it can be shown that there is a virus
present both in the heart muscle and in the skeletal muscle. We believe, but cannot prove, that
the virus is also present in the brain. This cannot be proved as it is more difficult to get hold of a
sample of the brain.” ME Association newsletter 265, Autumn 1987

1987 The ME Association annual report 1987/88 (National Archives '266' file). Dr. Smith discusses
current research. Links with EBV, evidence of virus particles in muscle tissue. Lots of optimism
for future biomedical research.

1987 In 2002, Betty Dowsett cites 1987 as the end of the "halcyon days" of research. This is the
beginning of the rise to power and influence of The Wessley School and opposition to biomedical
scientists and doctors like Ramsay.

The “CFS” era begins...

1988 Holmes Criteria. Holmes, GP (1988) Chronic fatigue syndrome: A working case definition. Annals
of Internal Medicine 108: 387–389. Chronic fatigue syndrome (CFS) is an alternative label
introduced in this definition to describe a syndrome of chronic unexplained fatigue. Focus on
fatigue & diagnosis of exclusion.

1988 CDC controversially rename ME as “chronic fatigue syndrome” with new focus on “fatigue”

1988 Patient Ean Proctor at 13-years-old, was removed from his home against his parents' wishes and
hospitalized under a ‘Place of Safety Order.’ While in the hospital his health deteriorated as he
was subjected to inhumane treatments: being placed into a therapy pool to force him to use his
arms to swim, although he was unable to and would sink underwater; being left in urine soaked
clothes from wetting himself as no one would help him to the bathroom; only being allowed
visits from his family for a half hour a day; and confiscating his dark glasses despite having
photophobia. After a lengthy court battle and confirmation of his ME diagnosis from other
physicians, he was discharged back to home after nearly six months in the hospital. He remained
a Ward of Court but was allowed to see doctors who treated his physical symptoms. https://

1988 BBC Horizon documentary "Believe Me" broadcast on 27 June 1988 Season 24 ep 21. It was
concluded that all pwME should be tested & treated for underlying & reactivated viruses,
especially Enterovirus, EBV and other herpes type viruses, which are known to lurk in tissue and
reactivate, reflecting the biomedical research findings of the time.

1988 On 13th December 1988 ME patient Brynmor John MP died as he left the Westmister gym. �
1989 Research: abnormal red blood cells "Nondiscocytic erythrocytes in myalgic encephalomyelitis",
Simpson, LO. The New Zealand Medical Journal, 102 (864): 126-127, PMID 2927808. More on
Simpson’s work here:

1989 Concerned that there may be attempts to confuse ME with other conditions, in 1989 Dr. Ramsay
wrote a concise statement to clarify that M.E. is distinct and identifiable disease.

1989 Dr. A. Melvin Ramsay: “we have been in difficulty by the influence exerted by a psychiatrist,
Simon Wessely, who has secured for himself the position of referee to the BMJ whose Assistant
Editor has been strongly anti-ME and we cannot get anything published”

1990 Prof Simon Wessely "It is of interest that the ‘germ theory’ is gaining popularity at the expense
of a decline in the acceptance of personal responsibility for illness..." - 'Psychological Disorders
in General Medical Settings' Ed: N Sartorius et al Pub: Hogrefe & Huber, 1990
1990 Insurance Company PPP refuses to pay out on ME claims April 1990
status/1752014430492061752?s=61 reported in Daily Mail 12 Feb 1990

1991 Oxford Criteria (Michael Sharpe et al) are a set of criteria for the diagnosis of CFS published. This
criteria was used for PACE trial participation. Completely ignores all known pathologies to date
and only requires new onset fatigue for diagnosis.

1991 Research: Mitochondrial abnormalities in the Post Viral Fatigue Syndrome, Behan https://

1991 Michael Sharpe has argued that extensive laboratory investigation “may be psychologically
harmful to the patient by reinforcing their beliefs or concerns about serious physical disease.”
This is often cited as the reason for lack of testing in patients and part of the sustained medical
neglect endured by patients & used by the Wessely School to deny known pathologies, by
denying patients the testing needed.

1992 Professor Hugh Fudenberg stated that there is “a greater death rate than normals in the same
age range” (The Clinical and Scientific Basis of Myalgic Encephalomyelitis Chronic Fatigue
Syndrome: ed. BM Hyde, published by The Nightingale Research Foundation, Ottawa, Canada,
1992: page 644).

1992 15th April 1992 Wessely spoke at a Pfizer/Invicta symposium held at Belfast Castle (Eradicating
“Myalgic Encephalomyelitis”), where he said that “ME sufferers prefer to feel that they have a
‘real’ physical disease – it is better for their self-esteem, and that the label ME helps legitimise
patients’ dealings with doctors.”

1993 UNUM Provident reported in that ME/CFS came second in the list of the five most expensive
chronic conditions, being three places above AIDS

1993 Jul 25, 1993 - Video - "ME is still not taken seriously" - Ean Proctor is interviewed by Dr. Anne
McIntyre for the BBC4 program, Frontline. (Interview with Ean starts at the 2:45 minutes mark.)
1993 Mansel Aylward invited psychiatrist Simon Wessely to give a presentation on his biopsychosocial
approach to CFS before the then Minister for Social Security. Wessely claimed: “As regards to
benefits: it is important to avoid anything that suggests that disability is permanent, progressive
or unchanging. Benefits can often make patients worse.”

1994 Fukuda Criteria (Fukuda & Michael Sharpe, Simon Wessley)
PEM (post Exertional malaise) is mentioned, but not required. Focus still mainly on fatigue.

1994 Unum have been advising UK governments since 1994, when the Conservative government hired
John LoCascio, 2nd vice-president of giant US disability insurance company, Unum, to advise on
reducing the numbers successfully claiming Incapacity Benefit (IB). He joined the “medical
evaluation group”.

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

1995 Research: Brainstem perfusion impaired in CFS. Costa, Tannock, Brostoff PMID: 854226 https://
1996 1996 to April 2005 Mansel Aylward was chief medical adviser, medical director & chief scientist
of the UK Department for Work and Pensions & chief medical adviser and head of profession at
the veteran’s agency, Ministry of Defence. He was involved in the establishment of the new
Work Capability Assessment. When he left the dept, he headed the UnumProvident Centre for
Psychosocial & Disability Research at Cardiff University with funding from Unum Provident, from

1996 Death of Alison Hunter from severe progressive ME. Aged 19 Australia. �
1995 May 17, 1995, Wessely was one of the main speakers at a Unum-supported symposium held in
London entitled “Occupational Health Issue for Employers” (where ME was described as “the
malingerers’ charter”) at which they advised employers how to deal with employees who were
on long-term sickness absence with “CFS”. Moreover, in UNUM’s “Chronic Fatigue Syndrome
Management Plan”, ME/CFS is described as “Neurosis with a new banner” and the same
document states “UNUM stands to lose millions if we do not move quickly to address this
increasing problem”.

1996 In the United Kingdom, the Chief Medical Officer Kenneth Calman requested a report from the
medical Royal Colleges. This led to the publication of a joint report in which the term "chronic
fatigue syndrome" was found to be most representative. Authors include Simon Wessley & Peter
White & a heavy bias of authors from the psychiatry field and acolytes of the psychosocial
narrative. CFS: Report of a joint working group of the Royal Colleges of Physicians, Psychiatrists
and General Practitioners. London, UK: Royal College of Physicians of London. 1996.

1997 Death of Joanna Butler aged 24. “Joanna was soon to be paralysed by an extreme form of the
little understood illness Myalgic Encephalomyelitis (ME). She died on 27th July 1997, aged only
24. Jo had been desperately ill for 5 years when she died, and the illness had slowly consumed
both her life and the lives of those closest to her. But at the centre of this dreadful condition
was still Jo, the same Jo we had always known: talented, smiling, full of love, hope and promise.”
From the book “Daffodil Sky” published in her memory.

1998 Wessely, Hotopf & Sharpe promote their latest book "Chronic Fatigue and its Syndromes" (OUP,
£65) available from Telegraph Books, in the Sunday Telegraph Magazine, 12th July 1998. Focus
of the article is “tiredness”.
1998 Research finding: Hypercoagulation. “Is CFS/FM due to an undefined hypercoagulation state
brought on by immune activation of coagulation?” D Berg, LH Berg, J Couvaras. https://
1998 Research: Brain 18FDG PET showed specific metabolism abnormalities in patients with CFS in
comparison with both healthy controls & depressed patients. The most relevant result of the
study is the brain stem hypometabolism
1998 Research: Reduced blood volume
1999 In an influential 1999 article in the Lancet, Sharpe, Wessely and Nimnuan claimed that
syndromes such as CFS constitute an “artefact of medical specialisation.” They argued that
there’s a large population of patients with multiple medically unexplained physical symptoms
(MUS or MUPS) and that it’s mostly the specialist they see that determines their diagnosis.
When seen in gastroenterology patients might be diagnosed with irritable bowel syndrome, in
rheumatology with fibromyalgia, in cardiology with atypical chest pain, in neurology with tension
headache and in an infectious diseases clinic with chronic (postviral) fatigue syndrome.
According to Sharpe and colleagues, there is a large overlap between these conditions and they
should, therefore, be viewed together as one functional somatic syndrome. https://
1999 NICE formed in the UK �
1999 Professor Michael Sharpe believes that there is no pathology in ME/CFS. He describes patients
who suffer from it as “the undeserving sick of our society and our health service” (lecture given
in October 1999 hosted by the University of Strathclyde) and asserts: “The label of CFS avoids
the connotations of pseudo-disease diagnoses such as ME” (Occup Med 1997:47:4:217-227).

2000 First edition of the IoP’s “Guide to Mental Health in Primary Care” included “CFS/ME” as a mental
disorder. Wessley School involvement.

2001 WHO issued a statement repudiating the unofficial re-classification by the UK Collaborating
Centre at the IoP, saying that it was at variance with the WHO’s position. An erratum to the
Guide had to be issued, but only after 30,000 copies had been sold. Sept 2001

2001 Research finding: Hypercoaguable State Associated with Active Human Herpesvirus-6 Viremia in
Patients with CFS - Joseph H Brewer & David Berg

2001 In November 2001 a conference assembled at Woodstock, near Oxford. Its subject
was ‘Malingering and Illness Deception’. Amongst the 39 academics and experts was Malcolm
Wicks, Parliamentary Under Secretary of State for Work, and Mansel Aylward, his Chief Medical
Officer at the Department of Work and Pensions (DWP), Simon Wessley, Peter White, Michael
Sharpe. What linked many of the participants together, including Aylward, was their association
with the giant US income protection company UnumProvident. https://

2002 UK CMO (Chief Medical Officer) report, Liam Donaldson. 11/1/02 �
2002 All three PACE trial investigators have invested in developing careers founded on the
development of biopsychosocial interventions for CFS, and the two who had been part of the
Chief Medical Officer’s CFS working group both resigned because the active biopsychosocial
approaches of Cognitive Behaviour Therapy (CBT) and Graded Exercise Therapy (GET) were not
endorsed over “pacing” in the way that they had wanted. (See Chronic fatigue report delayed
as row breaks out over content. The British Medical Journal, 2002, and Power-sharing, not a
take-over, 2002.)

2002 Science Media Centre Formed. Simon Wessley on board of trustees.
Science_Media_Centre. The SMC consistently downplay or ignore biomedical findings in ME in
media briefings and instead focus on research from the Wessley School & it’s acolytes, often
over-egging results and widespread coverage of psycho-social studies and unevidenced opinion
on ME.

2002 6th August 2002 the WHO confirmed that ME will stay in the neurological section as a disorder
of the brain and that the WHO has no plans to reclassify it as a psychiatric disorder in any
forthcoming revision of the ICD.

2003 January 2003, Malingering and illness deception book published. “The meeting which formed the
basis for this book would not have been possible had it not been for the enthusiastic support of
Professor Mansel Aylward and funding from the Department for Work and Pensions.”

Professor Simon Wessely and other members of the "Wessely School" in the perception of
Myalgic Encephalomyelitis (ME) in the UK.Background Briefing for the House of Commons Select
Health Committee

2003 Canadian Consensus Criteria - PEM is required symptom, also includes neurological and
autonomic symptoms.

2004 UNUM issued a Press Release reporting a 4,000% (four thousand) increase in claims for
symptom-based syndromes, including ME/CFS. No other disease category surpassed these rates
of increase.

2004 Concepts of rehabilitation.

2005 Systematic Review from the Centre for Reviews and Dissemination at York, whose lead author
was persuaded to change her mind between her 2001 article in the Journal of the American
Medical Association (JAMA) and her 2005 Review for NICE: This may amount to scientific
misconduct since the same author has remarkably different approaches to the same data in the
two documents concerning the recommended psychiatric management regime favoured by NICE

2005 PACE Trial begins. Recruitment of patients began in March 2005 and data collection was
completed in January 2010.The study protocol was published in BMC Neurology in 2007. The
main study outcomes were published in The Lancet in 2011 and the experimenters continued to
publish numerous papers for a number of years. Flooding the media with articles pushing their

2005 USA death of Casey Fero aged 23 �
2005 Invest In ME research charity founded by patients & carers frustrated at the fact that biomedical
research in the U.K. was essentially unofficially defunded in a bit to change things and support
and promote biomedical research in the U.K. First U.K. biomedical research conference in 2006.

As Simon Lawrence pointed out on 27th September 2005 on Co-Cure:
"With the amount of biomedical research now available showing significant and substantial
physiological abnormalities in ME/CFS patients, it is no longer acceptable for unsubstantiated
opinion and theories about personalities of ME/CFS patients to influence public policy. The
psychiatric profession has been at the forefront of the attempt to portray ME/CFS as a
psychosomatic disorder with no physiological basis. This view has been invalidated by medical
science and it is not appropriate for psychiatrists to pronounce on the illness further. We will
ensure that any attempt to influence DWP decision-makers to use a psychosocial model for ME/
CFS will be met with resolute opposition".
2005 UK death of Sophia Mirza aged 32. Sophia’s death was reported in the ITV news and many
thought this would end the systemic abuse from the psych lobby & medical neglect from
doctors. It did not.

2006 The Gibson Report UK. Inquiry into the status of CFS/M.E. and research into causes and
treatment in to Myalgic Encephalomyelitis (ME) – otherwise known as the Gibson Inquiry, urged
the MRC to adopt new approaches to ME research and to provide necessary funds to explore the
physiology behind the disease.

2006 Invest in ME comments on The Gibson Report. Group on Scientific Research in to Myalgic
Encephalomyelitis (ME) Nov 2006

2006 Documentary evidence exists showing that the MRC internally classifies "CFS/ME" as a mental
(behavioural) disorder by NHS Plus in its published Policy Document of October 2006
("Occupational Aspects of the Management of CFS: a National Guideline" [DH publication
2735539], whose external advisors were psychiatrists Professors Michael Sharpe and Peter
White of the Wessley School.

2006 The U.S. Centers for Disease Control & Prevention (CDC) recognized CFS as a serious illness, and
launched a campaign in June 2006 to raise public and medical awareness about it.

2006 Wessley: “Diagnosis elicits the belief the patient has a serious disease, leading to symptom
focusing that becomes self-validating and self-reinforcing and that renders worse outcomes, a
self-fulfilling prophecy, especially if the label is a biomedical one like ME. Diagnosis leads to
transgression into the sick role, the act of becoming a patient even if complaints do not call for
it, the development of an illness identity and the experience of victimization”. Simon Wessely &
Marcus S.J. Huibers: The act of diagnosis: pros and cons of labelling chronic fatigue syndrome.
Psychological Medicine 2006: 36

2006 Wessely stated: “Like it or not, (ME) CFS is not simply an illness, but a cultural phenomenon and
metaphor of our times” (Psychol Med 2006: 36: (7):895-900).

2006 “We’ve documented, as have others, that the level of functional impairment in people who
suffer from CFS is comparable to multiple sclerosis, AIDS, end­stage renal failure, chronic
obstructive pulmonary disease. The disability is equivalent to that of some well­known, very
severe medical conditions.” – Dr. William Reeves, former CDC Chief of Viral Diseases Branch (2
006 CDC Press Conference)

2006 Professor Leonard Jason et al, who found that the three most prevalent causes of death in ME/
CFS patients were heart failure, suicide and cancer and that the age of death is considerably
younger than in the general population (Health Care Women Int 2006:27(2):615-626).

2006 Nightingale Definition - Byron Hyde �
2007 CFS Clinical and Research Conference held in Ft Lauderdale, Florida in January 2007—at which
yet more evidence was presented that comprehensively destroys the psychiatric paradigm

2007 Research: Diminished Cardiopulmonary Capacity During Post-Exertional Malaise - VanNess

2007 Wessely wrote in the Unum Chief Medical Officers Report 2007 'Why & when doctors collude
with patients' p30. He likens patients to criminals & the Chinese Govt & Drs as co-conspirators

2007 Select Comittee on Health - written evidence submitted by Dr Malcom Hooper detailing the role
of the private insurance and psychiatry and their influence. A response to the draft of the NICE
Guidelines for ME and the use of CBT & GET.
March 2007
2007 Research: Higher levels of serum IgA and IgM against lipopolysaccharides (LPS), a major
component of the outer membrane of gram-negative bacteria, indicating translocation. Serum
IgA was significantly correlated to the severity of illness.
2007 NICE publish 1st ME/CFS guidelines. Heavy influence from The Wessley School lobby means CBT
and GET are listed as “treatments”. Charities and patient groups condemned the guidelines as

"unfit for purpose”.

2009 Research: CFS illness severity, sedentary lifestyle, blood volume and evidence of diminished
cardiac function
2009 Study published in the journal Science reported an association between a retrovirus xenotropic
murine leukemia virus-related virus (XMRV) and CFS. Retracted in 2011

2010 In 2010 at the Invest in ME International ME Conference, regarding Graded exercise therapy, Dr
Paul Cheney said “We see cardiac diastolic dysfunction in almost every case... there are patients
whose diastolic dysfunction is so low/poor that they would fit well into a cardiac ward awaiting
transplant... The whole idea that you can take a disease like this and exercise your way to health
is foolishness. It is insane.”

2010 MAGICAL MEDICINE: How to Make a Disease Disappear by Dr Malcom Hooper & Margaret Williams.
A 422 page document detailing the history of which many of the entries in this timeline are
based on:
2010 ME, Severe ME/CFS: A Guide to Living by Emily Collingridge �

2010 The history of medicine and definitions of illness and disability are being re-written for the
insurance industry, by neoliberal “small state” ideologues and anti-welfarist governments.
Formally instituted by Cameron in September 2010, the Behavioural Insights Team, (otherwise
known as the Nudge Unit), which is a part of the Cabinet Office, is made up of people such as
David Halpern, who co-authored the Cabinet Office report: Mindspace: Influencing Behaviour
Through Public

2011 UK PACE trial published - only trial ever to be part funded by the DWP �
2011 PACE TRIAL. An expression of concern, by Douglas T Fraser
2011 Robert Courteney May 15, 2011, FOI request to Medical Research Council: Request for raw data
from the PACE Trial (Denied)

2011 Several articles in U.K. newspapers appear where Simon Wessley claims that Chronic fatigue
syndrome researchers face death threats from “militants”
society/2011/aug/21/chronic-fatigue-syndrome-myalgic-encephalomyelitis. This was the
beginning of the “militant patient” narrative and a long term malicious campaign across
mainstream media, slandering an entire and already disenfranchised, very vulnerable group of
patients. This would be unacceptable with any other disease, but such is the toxic stigma
created by the Wessley School towards ME patients, no one seemed to question it or the real
harm to patients or the poor quality of Wessleys own research. Meanwhile many ME patients are
actually dying and millions of ME patients around the world are being harmed and disabled long
term by the psycho-social model, graded exercise therapy and subsequent medical neglect.

2011 “Hopefully one day, my dream is that our medical community will produce a formal apology to
the patients that—not having believed them all these years—they are facing a real illness.” —
Dr. Jose Montoya, CFS researcher and clinician, Stanford University (during a lecture on Chronic
Fatigue Syndrome at Stanford University on March 3, 2011

2011 Chronic Fatigue Syndrome and the CDC: A Long, Tangled Tale published in Virology 23/11/2011
by David Tuller

2011 Routes onto Employment and Support Allowance – said that if people believed that work was
good for them, they were less likely to claim or stay on disability benefits. It was decided that
people should be “encouraged” to believe that work was “good” for health.

2012 ME International Concensus Critera Primer for Medical Practitioners. The MEICC. Detailing current
known pathophysiology, testing, diagnostics and best practice advice for doctors and patients.

2012 Research: Dyspnea (air hunger & shortness of breath) in Chronic Fatigue Syndrome (CFS):
Comparison of Two Prospective Cross-Sectional Studies.

2012 On March 18, 2012, Emily Collingridge, aged 30, died of a respiratory arrest after a long battle
with severe ME/CFS.

2012 Valerie Elliot Smith begins investigation of the “Secret Files”. These detail the behind the scenes
discussions about ME within government departments.

2012 Voices from the Shadows is a British film about severe ME/CFS made by Natalie Boulton and
Josh Biggs.[1] It features Leonard Jason, Nigel Speight and Malcolm Hooper.

2013 Death of Australian, Theda Myint, aged 37. 25th July 2013. �

2013 Research: Defects in submaximal metabolism, workload, and peripheral neurovascular
dysregulation. 11/13
2014 24 March 2014 Alem Matthees filed (FOIA) request for the PACE trial data, but Queen Mary
University of London (QMUL), the institution that sponsored the PACE study, denied his request.
On 18 June 2014, Matthees requested an internal review, but QMUL again denied his request.
On 15 Dec 2014, he filed a complaint to the Information Commissioner (IC).

2015 SEID. IOM publishes report on ME/CFS, Beyond Myalgic Encephalomyelitis/Chronic Fatigue
Syndrome: Redefining an Illness proposing a new name – SEID systemic exertion intolerance
disease – & new diagnostic criteria.12/2/2015

2015 October 2015, the IC ruled in Matthees' favor that the researchers were required to release the
anonymised data of the PACE trial study. QMUL appealed but again lost their appeal in Aug 2016

2015 TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study 21/10/2015
By David Tuller, DrPH

2015 Research: Cardiac dysfunction and orthostatic intolerance in patients with myalgic
encephalomyelitis and a small left ventricle, Kunisha Miwa
2015 MEpedia was launched by Jen Brea of MEAction on December 6, 2015. A lot of the research on
this timeline was sourced from here and it’s a valuable fount of knowledge.

2015 Quote: “Given what we have learned in the past eight years about this illness, it is intellectually
embarrassing to suggest that ME is a psychological illness." Betsy Keller, PhD (2015)

2016 February 2016, Dr Anthony Komaroff, who was part of the CDC group of clinicians who coined
the name chronic fatigue syndrome, said: "I think that was a big mistake because the name, in
my opinion, and the opinion of a lot of people, it both trivializes and stigmatizes the illness. It
makes it seem unimportant, maybe not even real"

2016 Research: Unexplained exertional dyspnea (air hunger & shortness of breath) caused by low
ventricular filling pressures: results from clinical invasive cardiopulmonary exercise testing -David
Systrom, MD

2016 “Cardiovascular and blood pressure irregularities” Dr Paul Cheney

2016 OMF research. March 2016, it was announced that the ME/CFS Severely Ill, Big Data Study had a
significant result in the area of mitochondria. This lead to the addition of Dr. Robert Naviaux (a
mitochondrial expert) to the research team.

2016 “In the Expectation of Recovery” MISLEADING MEDICAL RESEARCH AND WELFARE
REFORM, George Faulkner, 2016

2016 “Rogue company Unum’s profiteering hand in the government’s work, health and disability
green paper” Written by Kitty S Jones November 2016


2016 Sharpe has also referred to patients opposing his research as "militant" ME patients, and used
"activists" as a disparaging term. Blease and Geraghty (2016a, 2016b) found "epistemic
injustice" and "ethical failures" in the treatment of ME patients, and in 2018 reported they
could not find any evidence of "militancy" among ME/CFS patient groups.
2017 Unrest film by Jen Brea released �

2017 Research: Dr. Davis explained in a video that the development of new nanofabricated technology
allows rapid drug screening via measurement of electrical impedance. This technology may be
able to determine which medications could be most effective in treating myalgic
encephalomyelitis/chronic fatigue syndrome. Experimentation is also being carried out to test if
this same nanofabricated technology could be used in developing a simple diagnostic test for
myalgic encephalomyelitis/chronic fatigue syndrome. To this date this research remains
unfunded, despite the importance of having a diagnostic marker for ME.

2017 Book: Science, Politics, ....and ME by Ian Gibson & Elaine Sherriffs ISBN-13: 978-1543183788
2017 Sharpe has described those who opposed his research as a co-ordinated "pressure group" who
are "against science", similar to climate change deniers. In a lecture abstract Sharpe said that
the use of “co-ordinated pressure group action against science was prominently seen in the field
of climate change research but is now emerging in other areas. Chronic fatigue syndrome or
myalgic encephalomyelitis (CFS/ME for short) is one of these.”
2017 U.K. Death of Merryn Crofts aged 21 �
2018 Formal complaint to Dr. David Tovey, Editor in Chief of the Cochrane Library Feb 12, 2018 from
Robert Courtney This is a formal complaint with respect to the current version of "Exercise
therapy for chronic fatigue syndrome" by L. Larun et al. (Cochrane Database Syste Rev. 2017;

2018 U.K. Death of Robert Courteney, aged 48. �
2018 Dr. Myhill Calls For The GMC To Investigate The PACE Trial Authors. So far the GMC have refused
to even investigate and instead Dr Myhill was investigated herself after an anonymous complaint
shortly after her request for an investigation and Dr Myhill subsequently cleared. There has still
been no formal investigation into the PACE trial authors, who are seemingly being protected
from any scrutiny.

2018 A new approach to find biomarkers in chronic fatigue syndrome/myalgic encephalomyelitis (CFS/
ME) by single-cell Raman micro-spectroscopy - Dr Karl Morten

2019 Brian Vastag was able to prove his PEM was a severe symptom causing disability with CPET,

winning his long term disability (LTD) claim.

2019 "The ‘cognitive behavioural model’ of chronic fatigue syndrome: Critique of a flawed
model" (2019) by Keith Geraghty et al. Free full text:

2019 Research: Evidence of widespread metabolite & temperature abnormalities in ME/CFS brains
indicating neuroinflammation. 1/19 Mueller

2019 Research: Assessing cellular energy dysfunction in CFS/ME using a commercially available
laboratory test.

2019 Research: “patients with ME/CFS have distinct defects in both ventricular filling pressure and
oxygen extraction from the muscles. Neither of those are features of deconditioning, in which
the major defect is decreased stroke volume and cardiac output. In ME/CFS patients, he found
supranormal pulmonary blood flow compared with VO2 max, indicating left-to-right shunting. In
addition, Systrom found that a large proportion of ME/CFS patients with these cardiopulmonary
defects also have biopsy-demonstrated small fiber polyneuropathy, suggesting that PEM may be
due to an underlying autonomic nervous system dysfunction. Systrom https://

2019 SARS-COV-2 Covid 19 discovered in China. The beginning of the Pandemic era. Winds of change
or a repeat of history?

2020 As covid-19 kicks off a global pandemic, ME patients online warn of potential surge in ME cases,
as seen in previous epidemics, and first reports of covid long haulers starts to trickle through
social media. ME patients try to warn long covid patients to what is coming (no help, gaslighting,
downplaying and attributing to psych and no practical medical help and the importance of
resting and pacing) but response is very mixed. Some finding the ME knowledge very useful,
while others react with hostility due to the stigma & misinformation associated with ME. The
main concern is with the lack of knowledge of PEM (post Exertional malaise) aka PENE (post
Exertional neuroimmune exhaustion) and the use of exercise therapy on long covid patients
without screening them first for ME and PEM/PENE and the involvement of the Wessley School
cabal influencing how long covid is treated in the media and NHS.

2020 Article: Will There Be a Post-COVID-19 Form of ME/CFS? By Anthony L. Komaroff, MD
“The strongest predictor of a "post-infective fatigue syndrome" was the severity of the initial
illness, as judged both by symptoms and by laboratory test abnormalities. In other words,
objective and measurable biological abnormalities predicted who would develop ME/CFS. In
contrast, people with a past history of psychiatric illness were not more likely to develop ME/

2020 The gaslighting and misinformation of long covid begins:

2020 Which led to this excellent response by Professor Brian Hughes:


2020 Kara Jane Spencer releases album It’s Still Me on Severe ME Day raising awareness for severe ME
and money for an autopsy tissue bank with the ME Association.

2020 Research: Intracranial Hypertension and Craniocervical Obstructions have a significant
overrepresentation in ME/cfs. 8/20

2020 ME Action produce an excellent Stop Rest Pace video to spread awareness of PEM and the
importance of rest to the long covid community, who are faced with harmful advice to exercise.
Oct 2020

2020 Research: Reductions in cerebral blood flow 9/20
2021 Will COVID-19 Lead to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome? https:// Jan 2021

2021 George Monbiot writes on on Long Covid, Chronic Fatigue Syndrome & Misogyny April 2021

2021 Broken Battery educational video on the similarities of post viral
illness, ME and long covid. Shares news reports of long covid of the time. 20th May

2021 The new ME NICE Guidelines are due to be released. Unknown to patients & charities, secret back
door text-message lobbying of senior NICE staff by pro psycho-social individuals at NHS England
and the Royal College of Psychiatrists are happening in the days before ME/CFS guideline pause.

2021 Researchers find how difficult it is to access PACE Trial data.

2021 August - NICE pause guideline. The delay is heavily criticised by guideline stakeholders including
Doctors with M.E. who accused NICE of acting unlawfully, and all the national patient groups,
who had not been aware of the private discussions taking place.

2021 U.K. death of ME patient Maeve Boothby-O’Neill, on October 3rd aged 27'Neill

2021 Controversial Nice Guideline Roundtable. 18th October �
2021 NICE finally publishes ME guideline after making some “clarification edits”, October 29th �
2021 Invest in ME Research stated that they welcomed the changes in the new guideline, but felt that
undoing the harmful therapies used during the last 14 years was not enough, and the result was
a fudge resulting in a guideline that could, and should, have been written in 2007.

2021 Long Covid research:Persistent clotting protein pathology in Long COVID/Post-Acute Sequelae
of COVID-19 (PASC) is accompanied by increased levels of antiplasmin https://

2022 “Understanding ME/CFS and Long COVID as Post-Viral Conditions” https://

2022 Gulf War Syndrome & Simon Wessely. "For 30 years they have been disowned, ignored and lied
to by consecutive governments, with no positive answers to their questions about exposure to
toxic substances and gases & the affect it had on them"
2022 ME Research: “The occurrence of hyperactivated platelets and brinaloid microclots in Myalgic
Encephalomyelitis/Chronic Fatigue Syndrome”

2023 Death of Kara Spencer on 3rd Jan aged 32.

2023 Biomarker: Circulating microRNA expression signatures accurately discriminate myalgic
encephalomyelitis from fibromyalgia and comorbid conditions. Moreau 2/23 https://
2023 Research. Enlarged brainstem in ME & LC 3/23
2023 Ed Yong article on PEM “Post-exertional malaise—the cardinal symptom of ME/CFS—is distinct &
worse. Less a symptom than a physiological state. After gentle physical/mental activity, your
batteries aren’t drained but missing entirely. PEM is the annihilation of possibility.” https://
2023 On 16 March 2023, HUS organised the international Long Covid symposium ”Navigating the
unknown: Exploring Realities & best practices on Long Covid”. The symposium did not present
any treatment methods for the treatment of Long Covid that are based on comprehensive
research on the biological mechanisms of Long Covid. The primary message was that patients
should be guided to think that their symptoms are caused by their own harmful thought &
behaviour patterns.

2023 Research: Impaired natural killer (NK) cell cytotoxicity & TRP ion channelopathy, 6/23 https://

The latest issue of this document will be in my links on Twitter. Please be advised this document is
updated when I am able to. I have level 2 function on the funcap55 scale so struggle quite a bit and
have been working on this document several years.
Other Sources & further reading:
Book: Science, Politics, ....and ME by Ian Gibson & Elaine Sherriffs

Private insurance & DWP related articles

2023 Research: Elevated WASF3 levels disrupt cellular energy production and impair mitochondrial
function and may mediate exercise intolerance 8/23

2023 Article: "The political project of normalizing transmitting COVID ... is the most thorough victory
of the far-right in living memory, and it has embedded its eugenicist logic into the foundation of
public beliefs about health, disability, and who deserves safety."
2024 Muscle abnormalities worsen after post-exertional malaise in long COVID https://
2024 Research: Monocyte dysregulation is prominent and dysregulation correlates with disease
severity. Platelets are also dysregulated, but this dysregulation resolves after provocation. 1/24
2024 Death of severe ME patient Lauren Hoeve by euthanasia aged 28. �
2024 ME Actions response to a dreadful article in the Telegraph regarding Lauren’s death. 1/24

Crunch ME database

DWP links
History of ME:

SevereME solve ME
Memorial of those who have died:

House of Commons - Health - Written Evidence

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