TIME LINE OF EVENTS

 

http://www.cfids-cab.org/cfs-inform/CFS.name/cfs.names.events99.txt

 

1934 -- outbreak at Los Angeles County Hospital

 

1956 -- outbreak at Royal Free Hospital, Britain

 

1956 -- the term "myalgic encephalomyelitis" is coined by Dr. Melvin Ramsey and Dr. John Richardson of (WHO).  Is published in the medical journal Lancet (U.K.)

 

1980-1984 -- Cluster outbreak of Adeno-Virus at Children's Hospital San Diego, kills 6 children in 1980...continues every August to cause staff to be sick and leave careers for good.

 

1984 -- Outbreak at Lake Tahoe, Nevada USA, investigated by local doctors Paul Cheney and Dan Peterson; this outbreak brings attention to the illness in the USA.

 

1985 -- Cluster outbreak in Lyndonville New York, with children...Dr. David Bell.

 

1986 -- CACTUS, San Fransisco based lobbying organization, run by Joan Sutherland. Shuts down in 1993.

 

1986 -- Jan Montgomery and Marya Grambs form together with CACTUS and start the San Francisco CFIDS Support group.  It closes in 1995.

 

1987 -- Name "Chronic Epstein-Barr Syndrome" is used for a while due to the Lake Tahoe outbreak common Virus was  EBV.

 

1988 -- Yuppie Flu is common name now along with Chronic EBV.

 

1988 -- C.D.C. develops first working case definition for CFS, chooses the name "chronic fatigue syndrome".  Most people in this committee are against the name including Dr. Alexis Shelekov (NIH and Salk Institute who discovered Polio and Ebola and Adeno Viruses, close friend to Dr. Philip R.Lee). CDC, barely gets the majority vote for the Working Definition of this "new" disease.  Others want Myalgic Encephalomyelitis as it is already known in the World Health Organization (WHO) and is known in the United Kingdom and Canada and Australia already.

 

1988 -- News media is very disparaging of CFS

 

1988 – The case of Ean Procter, the part paralysed and mute child was thrown in a swimming pool, overseen by the then Doctor Simon Wessely, and left to drown until staff realised he was actually paralysed and fished him out of the water. No action has ever been won against the staff of the hospital.

 

1990 -- CACTUS schedules own meeting on retroviruses for the first Saturday of September in San Francisco, California Health officials attend along with Dr. Elaine DeFreitas, Dr. Cheney, Dr. Jay Levy, Dr. Nancy Klimas, Dr. Phillip R. Lee.

 

1990 -- Dr. George Rutherford, an infectious disease specialist and epidemiologist, had served as chief of AIDS epidemiology for the city of San Francisco during the first years of the AIDS epidemic.  Grows increasingly concerned about CFS, "I think the city's experience with AIDS made people highly sensitive to making a big mistake with regard to another infectious disease.

 

1990 -- Virologist Dr. Elaine DeFreitas posits link between CFS and a mystery virus, CDC disputes findings; great controversy is stirred, the research work is never completed.  Dr. DeFreitas suggests that there are HTLV II particles in all patients that she has tested, however this does

not mean it is a NEW virus. Could be genetic material. Never claimed that this was a New disease.

 

 

1990 “The description given at the Mayo Clinic remains accurate: ‘The average doctor will see they are neurotic and he will often be disgusted with them’ ” (In: Psychological Disorders in General Medical Settings, ed: Sartorius et al; Hogrefe & Huber, 1990)

 

1992 -- Jane Perlmutter, director of CAN (CFIDS Activation Network, New

York), starts Blue Ribbbon Awareness.

 

April 1991 -- Joan Sutherland director of CACTUS has Dr. Elaine DeFreitas and Dr. Hilary Kropowski from the Wistar Institute testify for the first time in front of Congress with the strong help from Senator Ted Kennedy.. "Some scientists call this AIDS-non HIV".

 

June 1991 -- CACTUS member and Medical Professional Meghan Shannon, sick from the cluster outbreak at Children's Hospital in San Diego in 1982-1983, testifies before the Office Of Research for Women and Health, NIH.  First time medical professionals are considered high risk in theUSA.  The United Kingdom had already seen that health care workers (including teachers in definition) were at the highest risk.

 

1991 -- Barry Sleight, volunteer lobbyist, monitored as best he could what he privately called the "malfeasance and nonfeasance" at both agencies (NIH & CDC), composed a three-page memo about the history of the CFS research agenda for a well-known lobbyist, Tom Sheridan, a well known AIDSlobbyist.

 

1991 -- Low cortisol is found in CFS patients by Dr. Demitrack

 

1991 - Dr. Kenny De Meirleir et al find evidence of an unknown pathogen in the blood of his patients and calls for an urgent ban of blood 1991 -- donations on ME patients, which falls on deaf ears.

1991 The Oxford criteria is invented by Professors Michael Sharpe et al, expressly include people with psychiatric disorders in which “fatigue” is a prominent symptom (thereby, as noted above, potentially catching at least 33 other disorders that fit the Oxford criteria), but expressly exclude people with neurological disorders; indeed, the Oxford criteria claim to use people with neuromuscular disorders as controls, so by any logical reasoning, ME/CFS (an internationally classified neurological disorder) would be excluded.

 

1992 -- First of bi-annual medical/research conferences of the American Association for Chronic Fatigue Syndrome (AACFS), future conferences are held in Ft. Lauderdale, FL (1994), San Francisco (1996) and Boston (actually Cambridge, Mass., in 1998)

 

Summer 1993 -- Dr. Philip R. Lee nominated as Assistant Secretary for Health and Human Services.  His 2nd time; first term was January 1964, he develops Medicaid under the Johnson Administration.  Was hired by President John F. Kennedy shortly before he is assassinated.

 

1993 -- May 12 Awareness Day is invented by Tom Hennassey, soon adoptedworldwide.

 

October 1993 -- "International Conference and Hearing" held at CDC regarding CFS/ME.  Two day conference.  The new interim director for CFS since Dr. Walter Gunn resigned at the CDC is Dr. William Reeves, Jr. and Dr. Mahy, run this meeting.  Dr. Byron Hyde give an impassioned speech

about the name CFS and is angry that several of the Panel Members are obviously biased against the disease and think it is psychological. They were, Dr. Stephen Strauss and Dr. Lillian Abbey.   Tom Hennessey of RESCIND and Meghan Shannon MPWC's follow in separate speeches starting

with CHANGE THE NAME!!!

 

1993 -- CDC holds meeting on definition issues regarding CFS

1993- In his Testimony before the FDA Scientific Advisory Committee on 18th February 1993, Dr Paul Cheney (Professor of Medicine at Capital University; Medical Director of the Cheney Clinic, North Carolina and one of the world's leading exponents on ME /ICD-CFS) testified as follows:

" I have evaluated over 2,500 cases. At best, it is a prolonged post-viral syndrome with slow recovery. At worst, it is a nightmare of increasing disability with both physical and neurocognitive components. The worst cases have both an MS-like and an AIDS-like clinical appearance. We have lost five cases in the last six months.

 

Fall of 1994 -- Dr. Philip R. Lee meets for the first time with Inter-agencies and four patient representatives for CFS, chosen by Dr. Paul Levine.  Patient representatives were, Marya Grambs (San Francisco CFIDS Support Group), Kim Kenney (CAA), Orvaline Prewitt (Kansas CFIDSsupport Group) and Judy Baso (also from Kansas Support group but lives in Minnesota)

 

1994 -- First European medical/research conferences is held in Dublin.

 

1994 -- Possible urine bio marker for CFS is discovered by research team in Newcastle, Australia

 

1994 -- CDC revises, loosens research definition, retains the name "chronic fatigue syndrome".

1994 Wessely said: “I will argue that ME is simply a belief, a belief that one has an illness called ME and: “The Royal Free Disease itself is part of the world of myth” (“Microbes, Mental Illness, the Media and ME:  The Construction of Disease”. 9th Eliot Slater Memorial Lecture, Institute of Psychiatry, London, 12th May 1994)

 

April 1994 -- Open Interagency Meeting for public to testify with Dr. Philip R. Lee.  Held in Dr. Lee's office, very small group.  Again the name change comes up, Dr. William Reeves says that ME is inappropriate, we can't prove inflammation.  Shuts down the name change in this meeting, not

without Dr. Lee suggesting that we need a new name.

 

November 1995 -- "First World Congress on CFS and Related Immune Disorders", Brussels, Belgium.  Dr. Peter Behan (Scotland) and Dr. Kenny DeMeirlier, responsible for this.  The USA is now in Europe.  One American patient representative presents from the Medical Professional with CFIDS,

Meghan Shannon.  CAA refuses to go to Belgium but hold their own conference two weeks prior to the World Congress, splitting the medical community in America as to which conference they attend.

 

November 1995 -- Brussels BRAME (young patient Tanya Harrison launches Blue Ribbon Awareness Campain in First World Congress, 20 countries.  Also May 12th becomes known Internationally credited to Tom Hennessey, and Tanya finds Jane Perlmutter to thank her for the Blue Ribbon Awareness Idea.

 

1995 -- Johns Hopkins medical researchers find link between CFS and neurally mediated hypotension (NMH).

 

April 1995 -- Interagency meeting in Dr. Lee's Office; this time over 100 patients attend, room is too small for this meeting.  Dr. Lee suggests that CFS be Chartered Illness.  Dr. Reeves questions why.  Dr. Lee responds that we are in an election year and this illness needs to be protected so that the Inter-agencies continue to meet.  The beginning of the CFSC

 

1995: Professor Wessely and Anthony David dismiss the Camelford Water Posioning as “mass hysteria”. Seven people died and 25,000 injured. The Legend of Camelford: 1995:39:1:1-9) An enquiry was reopened in 2012 and West Somseret Coroner Rose records a narrative verdict and criticises the South West Water Authority for its "dereliction of duty" after "gambling" with the lives of 20,000 people

1995: Simon Wessely and Michael Sharpe speak at a symposium held at the London Business School entitled "Occupational Health Issues for Employers". Information presented included informing attendees that ME/CFS has also been called "the malingerer's excuse". Another speaker at this conference was Dr John le Cascio, Vice President of UNUM.

Just three extracts from a copy of UNUM's "Chronic Fatigue Syndrome Management Plan" seem significant:

(i) Diagnosis: Neurosis with a new banner

(ii) UNUM stands to lose millions if we do not move quickly to address this increasing problem

(iii) attending physicians (must) work with UNUM rehabilitation services in an effort to return the patient / claimant back to maximum functionality with or without symptoms.

1996 -- Book "Osler's Web" by Hillary Johnson is published, chronicles and condemns the medical establishment's response to CFS.

 

April 1996 -- CFSCC meeting, Osler's Web is distributed by Tom Hennessey. MPWC Meghan Shannon asks for investigation of misappropriations of funds and the removal of Dr. William Reeves, Dr. Stephen Straus from all work in the government that deals with CFS.

 

April 1996 -- Monday after CFSCC meeting, Congressman Nadler (New York),

requests an investigation into misappropriations of funds.

 

1996 -- Possible medical breakthrough found in RNase-L enzyme dysfunction, this might be a biomarker for CFS; research done by Temple University scientific team led by Dr. Robert Suhadolnik. Still remains a potential biomarker today in 2012 despite hundreds of meetings and conferences on the issue.

1996 -- Case of assisted suicide of American CFS patient (Judith Curren)stirs furor.

 

1996 -- Britain's Royal Colleges Report gives a psychiatric view of CFS/ME Book in the United Kingdom, by Jane Colby (former Headmistress of school in England) "ME The New Plague".

 

1997 -- Literature professor Elaine Showalter publishes book which claims that CFS is a form of hysteria.

 

1997 -- Cognitive behavioural therapy (CBT) is promoted for CFS in several publications by British psychiatrists.

September 18, 1997 -- U.S. physician education program is broadcast via satellite, its effectiveness is later questioned.  Dr. Paul Levine and Dr. Dedra Buchwald approach the CDC producer of this Public Service Education Program and ask that all inquiries for copies of the Video be directed to

AACFS in Seattle, they charge 29.95 for copy.  This is against Public Education rules.

 

May 14, 1998 -- BRAME in Parliament.  American BRAME and MPWC speak out to 53 Members of Parliament.  As a result a new Working Group of United Kingdom National Health is started (though it is still run by the old working group, Dr. Simon Wessely).  Former WHO doctor Dr. John Richardson(partner to Dr. Melvin Ramsey) speaks and Dr. Betty Dowsett, also partner to Dr. Richardson and Ramsey...ME champion Doctors.

 

May 1998 -- Start of new Working Party of Members of Parliament (MP's) to address the issues of ME patients due to the BRAME meeting and MP Tony Wright.

 

February 1998 -- Sydney medical conference on CFS/ME, may be beginning of annual conferences in Australia.

 

1998 -- CDC administrator Brian Mahy accused of diverting CFS research funds.

 

1998 -- Britain's Chief Medical Officer announces formation of working

group to address CFS clinical guideline. 161) Chronic Fatigue Syndrome. Anthony J Pinching Prescribers' Journal 2000:40:2:99 106 (now out of publication), chair of the Working Group states "over-investigation can (cause patients) to seek abnormal test results to validate their illness"

 

1998 -- Book "ME The New Plague" updated

 

1998 -- Low blood volume linked to CFS by Drs. Bell and Streeten

 

1999 -- Possible fibromyalgia biomarker found by researchers at Tulane

Univ.

 

1999 -- Name-change backed by U.S. CFS Coordinating Committee

 

1999 – Science and Media Centre formed under Professor Wessely whose purpose is to ensure that the media deliver only headline science stories that accord with Government policies – the reporting of the biomedical science surrounding ME/CFS has been noticeable by its absence. Instead, there has been a wealth of spin promoting the benefits and success of CBT and GET for every disorder imaginable, including ME/CFS.

 

1999 – Dr Nigel Speight, Consultant Paediatrician at the University Hospital of North Durham and an acknowledged expert on ME/CFS, had reported that the frequency of psychiatrists diagnosing Munchausen’s Syndrome by Proxy in parents of children with ME/CFS amounted to an epidemic, and this was reported by the ME Association in the Autumn 1999 issue of Perspectives

 

1999 -- CDC financial scandal confirmed by Inspector-General

 

1999 – NICE is formed in the UK

 

2000 -  It is also worth recalling that members of the CMO's Working Group were threatened with having to sign the Official Secrets Act and in June 2000 were issued with a warning that even if not covered by the Act, the status of other documents referring to ME/CFS was "RESTRICTED"

2000 – Professor Simon Wessely attempts to over ride the WHO classification of ME as a neurological disease and distributes Guide to Mental Health in Primary Care” across the UK PCT’S.

was produced in 2000 by the WHO Collaborating Centre for Mental Health at the Institute of Psychiatry; it used Wessely’s own material on “CFS/ME” and included ME as a mental (behavioural) disorder.  The Guide was funded by the Department of Health.  Over 30,000 copies were distributed before it was withdrawn.

 

In July 2001, the appalling treatment of children with ME / ICD-CFS was the subject of a major feature written by the Countess of Mar in The Daily Telegraph.

2002 – Set up of the £8.5 million Government funded ‘fatigue centres’ in Great Britain based on psychosocial principles and psychiatric therapies.

2002 - The Royal College of Paediatrics and Child Health (RCPCH)  work on Guideline for children with CFS. In January 2002 the Royal College of Paediatrics and Child Health produced a document entitled “The Next Ten Years: Educating Paediatricians for New Roles in the 21st Century”, which was a joint training project with the Royal College of Psychiatrists; it categorised children with ME/CFS as having mental health problems.

2002-2003 Members of the Wessely School rise to power, Trudie Chadler, Anthony Cleare, Michael Sharpe and Peter White appointed to MRC Boards

In 2002, even the UK ME Association itself published the following:  “These problems are not unique to CFS.  There are a number of these so-called functional syndromes. Arguments still continue as to their psychological, physical or hysterical origin”  (MEA Research & Scientific Bulletin:  2002: 9: page 4)

2003: MRC announces funding for psychiatric based PACE and FINE trials

In July 2004 (UnumProvident) opened its £1.6 million UnumProvident Centre for Psychosocial and Disability Research at Cardiff University.  The company appointed Mansel Ayward as Director following his retirement from the DWP. Professor Peter Halligan, who had forged the partnership with UnumProvident, was ambitious: ‘Within the next five years, the work will hopefully facilitate a significant re-orientation in current medical practise in the UK’ ”.

2005: In January 2005 the RCPCH launched its Report “Evidence-based guideline for the management of CFS/ME in children and young people”.

2005 Kerr carried out a complex analysis and found that patients with ME/CFS can be divided into seven clinical sub-types according to specific gene combinations and the severity of symptoms.  The most severely affected patients had 71of the 88 gene abnormalities.  In his follow-up paper to which the Telegraph article referred, Kerr’s earlier work was confirmed:

2005: Sophia Mirza becomes the first ever person to officially die from M.E. Sophia was forcibly removed from her home and sectioned under the Mental Health Act and a year later, died. The story sent shockwaves through the community and made news headlines but the Government failed to act or prosecute those responsible.

2006: NICE set up a draft guideline group including Professor Simon Wessely, Anthony Pinching and Chris Clarke of AFME who since resigned.

2006: Inquest into the death of Sophia Mirza reveals that her autopsy showed inflammation in the basal root ganglia.

2006:  A group of American researchers at the Cleveland Clinic discovers a new human retrovirus in men with a virulent form of prostate cancer.  They christen the retrovirus XMRV, which stands for xenotropic murine leukemia virus-related virus.  There are only two other known human retroviruses:  HIV and HTLV.  XMRV is closely related to a mouse retrovirus.  The last retrovirus to jump species was HIV—from monkeys to humans.

2006: Gibson Parliamentary Enquiry into the NICE Guidelines for CFS is heard. It is largely ignored by the Department of Health.

2007 – Action for ME announce their support of the Government funded-psychosocial centres for ME

2007 Peter White caught off the record stating that ME is an abnormal illness belief.

2007 – NICE Guidelines on CFS/ME published in the UK  - The NICE Guideline recommends the use of CBT to correct “unhelpful beliefs”; it states that CBT should be used to address “the relationship between thoughts, feelings, behaviours and symptoms” and it refers to “the distinction between causal and perpetuating factors”.  It specifically states that the CBT plan will include “identifying perpetuating factors that may maintain CFS/ME symptoms” and that the CBT plan will address “any over-vigilance to symptoms”.  This is wholly unacceptable: it demeans people with ME/CFS and it ignores the substantial body of evidence that ME/CFS is not a psychosocial disorder.

2008 – Lynne Gilderdale commits suicide after suffering from ME for 14 years. She was assisted by her mother, who was subsequently charged with attempted murder, administering drugs and was eventually given a one year conditional discharge after admitting to assisting with her daughter's suicide.

February 2009 – Judicial Review of the NICE Guidelines, fronted by patient advocated Kevin Short and Douglas Fraser. Judge rules in favour of NICE and furious patients demand a re-hearing.

July 2009 – Phil Parker gives a presentation of the ‘Lightening Process’ at Great Ormond Street Hospital. Peter White also presents.

October 2009: A breakthrough discovery is made by scientists at the Whittemore Peterson Institute, Dr Judy Mikovits and Vince Lombardi et al. discover the virus XMRV in 67% of CFS patients and 4% of healthy controls. Further testing reveals 95% of M.E/CFS patients are infected.

December 2009:  The Japanese Red Cross issues a  disconcerting report that XMRV has been detected in nearly 2% of Japan’s blood supply

January 2010 – Kay Gilderdale is acquitted.

June 2010: American agencies Food and Drug Administration (FDA) and the National Institutes of Health (NIH) direct an XMRV study that seemingly finds XMRV in 80% of patients with M.E/CFS.

March 2010 Professor Michael Sharpe pushes for the US to reclassify ME as a somotisation disorder under DSM-V.

August 2010: The long awaited FDA/NIH Alter/Lo study published in PNAS confirmed 86% of M.E/CFS patients infected and 7% of healthy controls. Alter paper find not XMRV but MRV (Murine Leukemia Retrovirus). Judy Mikovits announced that this is a family of human gammaretroviruses.

September 2010 – First international workshop on XMRV

September 2010:  Pathogen hunter Dr Ian Lipkin is designated the role of undertaking an XMRV study for the National Institutes of Health.

November 2010 - M.E patients are banned from donating blood.

 

 

September 2011: Robert Silverman publishes paper stating XMRV is contamination (Analysis of single nucleotide polymorphisms in XMRV patient-derived integration sites reveals contamination from cell lines acutely infected by XMRV)http://niceguidelines.blogspot.co.uk/2011/09/dr-robert-h-silverman-xmrv-is.html

November 2011: - Causing a giant backlash in the patient community – Judy Mikovits is fired from the Whittemore Peterson Institute and subsequently arrested after she supposedly removed laboratory notebooks and kept other proprietary information on her laptop and in flash drives and in a personal e-mail account. WPI, a nonprofit organization that’s based on the campus of the University of Nevada, Reno.

December 2011: Science fully retracts the 2009 XMRV Lombardi et al paper. The editor-in-chief of the journal, Bruce Alberts, wrote that “multiple laboratories, including those of the original authors” have failed to duplicate the findings of the paper, which reported finding XMRV in a greater proportion of CFS patients than healthy controls.

January 2012: Patients demand their funding back from the Whittemore Peterson Institute.

April 2012: Harvey Whittemore faces charges of embezzlement and fraud.

June 2012: Criminal charges against Judy Mikovits are dropped.