M.E? CFS? What’s in a Name?

**With thanks to Mary Schweitzer for her guidance and help**

Since the media labelled M.E “Yuppie Flu”, referenced in the press as a malingerers illness throughout the 1980’s, the debate over the naming of the disease known as M.E (Myalgic Encephalomyelitis) has raged across the world and is showing no sign of abating.

Since being diagnosed with M.E in 2009 I have been told many different names for my condition. Very few doctors refer to as M.E in the modern world,  I have been told I have everything from Chronic Fatigue Syndrome (yes it may be categorised under G.93 but the similarities end there), post viral fatigue, fibromyalgia, unexplained fatigue, abnormal illness beliefs, manipulation and hypochondria, laziness, depression and aversion to exercise. Of foremost significance is the fact that fibromyalgia is classified as a distinct entity in ICD-10 at section M79.0 under Soft Tissue Disorders and it is not permitted for the same condition to be classified to more than one rubric, since ICD categories are mutually exclusive.

My medical notes are littered with hints at somatisation but no mention of the real neurological defects that lie at the heart of this illness. The Ramsay defined M.E of old seems to have been long forgotten in modern medicine, swept away with the tide and redefined along with a plethora of symptoms attributing to modern day living; live fast and suffer the consequences later.

Does the name of a disease really matter? Does its international classification really change anything for the patient? I’ve spoken to many patients diagnosed with M.E/CFS who state that they do not care what their disease is called, as long as someone recognises that they are ill. I have also met patients who are perfectly happy to be told they have “Yuppie Flu” or “Chronic Fatigue” and fill out activity charts with giant coloured pencils and be told that by increasing their activity levels they will feel better – or if they shout “stop” at a symptom it will miraculously disappear. I’ve also met patients like me, who are angry, bitter and disillusioned with the system that has reclassified their pain and agony as a psychosomatic condition. United across the globe, we all strive for answers.

The more I was told that my local clinic only offered activity management and counselling by telephone with a physiotherapist but no physical therapy for my pain, the more a giant question mark hovered over my diagnosis and I wanted to know why the diagnosis of a neurological disease and its subsequent treatment was not adding up.

Since the 2009 Science paper findings of a Gammaretrovirus in 86% of M.E/CFS patients, the classification issue has been blown right open, with organisations pushing the CFSAC to drop the “CFS” label and campaigns to redefine M.E as per the Canadian Consensus Criteria.

The term Myalgic Encephalomyelitis (M.E.) was adopted in the UK and other British Commonwealth nations in the mid-1950s, replacing the name which was most commonly used after 1934, “atypical polio”.  It was added to the World Health Organization's International Classification of Diseases (ICD-8 Vol 1, code 323, page 158, Vol II) in 1969, coded to the chapter on neurology, and has remained in that category ever since.  Sir Donald Acheson’s (a former UK Chief Medical Officer) major review of M.E was in 1959. In 1962, the distinguished neurologist Lord Brain included it in the textbook of neurology.

Despite evidence of mitochondrial dysfunction, endocrine disturbance, chronic bacterial and viral infections and immune dysfunction, the disease known as Myalgic Encephalomyelitis (M.E), commonly referred to as Chronic Fatigue Syndrome, remains a decidedly contentious diagnosis and despite the innovations of modern medicine, M.E patients remain in the dark with little treatment options offered.

Many M.E patients report being treated poorly or disbelieved by the medical profession – and perhaps the name of the illness itself plays a part in the way the medical establishment view ME.

In the United States, the term “M.E” wasn’t used pre 1980’s, instead the authorities chose to label it “epidemic neuromyesthenia”, but the leading U.S. experts considered that it was the same disease as M.E.  The term “epidemic neuromyesthenia” was dropped in the 1970s but the way in which M.E was handled by the United States Centers for Disease Control is still cataclysmic, the wrong decisions were made which had a knock on effect still being felt today.

In the 1980’s a mysterious cluster outbreak of an unknown disease was urgently bought to the attention of CDC by Dan Peterson and Paul Cheney. Many of these outbreaks began with Epstein-Barr Virus (mono, glandular fever), so in the early days the US government called it "chronic Epstein-Barr," or CEBV.  Patients referred to it as anything from non-HIVAIDS to "Raggedy Ann Syndrome." Many patients never got EBV, and those who did continued to be sick after the virus disappeared, so in 1988 the US CDC convened a committee in 1988 to replace the name CEBV.  When you think of mono or glandular fever, you think of fatigue, so they replaced CEBV with "the Chronic Fatigue Syndrome."

As fatigue was one of the chief symptoms of the disease (but note, not the only key symptom), in 1988 after a spate of outbreaks in the 1970’s and 1980’s, the CDC were at a loss as to what to do with all these clusters of disease, they renamed and devised a new case definition.

The move to rename M.E was solely a political one, intending the new case definition to bear little resemblance to the real disease Myalgic Encephalmyelitis. The new definition was renamed “Chronic Fatigue Syndrome” and the diagnosis was made following fatigue or chronic ongoing tiredness lasting six months or more.

When considering the 1988 Holmes et al definition, nowhere in the documents does it describe either M.E or epidemic neuromyesthenia. The authors of the paper stated that CFS was intended to replace the then known CEBV, but at the same time as this meeting, two researchers, Stephen Straus and Simon Wessely suggested CFS should replace M.E or the UK label, Post Viral Fatigue Syndrome”.  

Despite the often heated discussion surrounding the Holmes definition, nowhere in the article that described the new condition CFS (Holmes 1988) does it mention either M.E. or epidemic neuromyesthenia, not even in the footnotes.  To the contrary: The authors explicitly stated that CFS was intended to replace "CEBV" and nothing else. It took two individual scientists, Simon Wessely of the UK and Stephen Straus of the US, to insist that CFS also should replace M.E. or another disease name in the UK that was not used in the US, "post-viral fatigue syndrome (PVFS). The question is, why did Stephen Straus and Simon Wessely want to reclassify and rename M.E, what was their agenda?

Meanwhile back in the United Kingdom in 1981, the disease known as Myalgic Encephalmyelitis – coined after the 1955 outbreak at the Royal Free Hospital in London which was documented by Melvin Ramsay, the doctor in charge at the time (Hyde, Goldstein and Levine, 1992), was being republished under its own definition under the name Myalgic Encephalomyelitis, featuring cardinal symptoms under its criteria including 1) fatigue after minimal exertion (not daily fatigue) and the delay of recovery of muscle power after exertion ends, (2) one or more symptoms that indicate circulatory impairment, (3) one or more symptoms that indicate central nervous system involvement (cerebral problems), and (4) and fluctuating symptoms.

British infectious disease specialist Elizabeth Dowsett plotted the cases of CFS/ME she and CFS/ME pioneer MeIvin Ramsay had seen in their practice since 1919 against reported cases of polio in England. When the Salk and then Sabin vaccines brought the yearly number of British polio cases below 25 in the early 1960s, the number of CFS/ME patients took off. In Ramsay's and Dowsett's practice alone, between 1960 and 1980 the number of CFS/ME patients increased by fifty times. Between 1980 and 1990, the number of patients with CFS/ME increased yet again by a factor of fifty! Throughout the world 32 CFS/ME outbreaks were recorded after the polio vaccine was distributed. So something other than the poliovirus was causing CFS/ME. (June, 2002 by Dr. Richard L. Bruno)

In 1990 Dr. Dowsett looked for antibodies to non-polio enterovirus in her CFS/ME patients. Fifty percent had antibodies to the first non-polio enterovirus ever discovered -- the Coxsackie B virus -- named after Coxsackie, New York, the town where it was found to have paralyzed children in 1948.

Yes, paralyzed. It is not just the polioviruses that enter and kill neurons in the spinal cord and brain stem. Neuron damage, weakness, paralysis and symptoms of brain fatigue caused by non-polio enteroviruses can be so similar as to be indistinguishable from the actions of polioviruses. One Coxsackie virus, named A7, produces paralytic symptoms so similar to polio that it has been named poliovirus "Type IV."

Other enteroviruses that cause damage and symptoms similar to the polioviruses include all the other Coxsackie viruses, the ECHO viruses (which in 1956 were the first viruses associated with a CFS/ME outbreak) and the recently discovered Enteroviruses 71. One piece of evidence directly links an enterovirus to CFS/ME and damage to the neurons that activate the brain. Sadly, the evidence comes from a CFS/ME patient who took her own life. Traces of Coxsackie B virus -- the same virus for which Dowsett found antibodies in her CFS/ME patients -- was found in both the hypothalamus and brain stem, the very heart of the brain activating system which our and others' research has found is damage in polio survivors with fatigue and in patients with CFS/ME.

So the "disguised form" that polio may be talking is not a disguise at all but replacement by another enterovirus. And the oral polio vaccine is "causing" chronic fatigue syndrome by making way for other enterovirus to grow in the intestines and be able to do damage like that done by the poliovirus, except that the damage is most frequently found in brain activating system neurons and causes fatigue, not in the spinal cord causing paralysis. (June, 2002 by Dr. Richard L. Bruno)

Yet all this evidence was ignored at the 1988 meeting in the US.

Contrast that with the next CDC definition (Fukuda 1994), which has been used for most of the peer-reviewed published literature on biomedical abnormalities, biomarkers, and pathogens.  It requires six months of debilitating fatigue, four of eight symptoms, and psychiatric disorders are exclusionary.  Simon Wessely, Michael Sharpe, Peter White, and other British psychiatrists countered with their own definition (Oxford 2001?) that requires six months of fatigue, permits concurrent psychiatric disorders, and excludes all biological symptoms.  The two definitions are in many ways diametrical opposites.

CFS was included in the index to ICD-10, coded to neurology at G93.3 with M.E. and PVFS.  When Canada adopted its own version, ICD-10-CA, CFS was explicitly placed in that category. Consequently, an international committee of clinicians created a definition that merged M.E. and CFS, sometimes called the Canadian Consensus criteria, or CCC, which was formally adopted by Canada in 2003.  This definition is much more complex than either Fukuda or Oxford, and had been used in the US as well as Canada by a number of specialists and researchers to achieve a more specific diagnosis.

After the cursory investigation of the outbreak at Incline Village, the Centers for Disease Control (CDC) and the National Institutes of Health (NIH) made little effort to aggressively research the disease. It was not until 1995--ten years later--that scientists at the CDC gave CFS a "Priority 1" listing among their "New and Re-emerging Infectious Diseases" category, thus officially recognizing it as a bona fide disease. Despite including CFS in this category, these agencies continue to insist there is no evidence that CFS is infectious. http://www.ncf-net.org/library/hillary.htm

There are several reasons. First, these agencies have not done their own studies on CFS transmission, and they typically have disdain for the studies performed by independent investigators. In addition, the government's primary CFS investigator at the NIH, Stephen Straus, has continually suggested the disease is a psychiatric problem, not a physical one, and he routinely discounts the research of those scientists who demonstrate otherwise

 "…for several years he presented grand rounds in American and European hospitals on the disease, providing thousands of doctors with the "official" U.S. government line on the disease: "CFS" was a psychiatric disorder of over-ambitious, under-achieving women."

 More early evidence of pathological abnormalities in M.E occurred in the early 1990’s, at the International AIDS Conference, held in Amsterdam in 1992. A bombshell was dropped that some researchers had identified cases of AIDS without evidence of infection with the "AIDS virus," HIV.

These "non-HIV AIDS cases" had severely depleted T4 (or CD4) cells, like AIDS patients; they also developed life-threatening opportunistic infections.

And some of the non-HIV AIDS cases, it was soon revealed, were actually CFS patients.

Shortly after the June 1992 AIDS conference in Amsterdam, Chronic Fatigue Syndrome researcher Dr. Paul Cheney announced that he had 20 CFS patients in his practice who had the same immune system deficiencies as the non-HIV AIDS cases.

The hallmark of the HIV-negative AIDS cases, as defined by the Centers for Disease Control and Prevention, is a depletion of the T4 (or CD4) cells.

Therefore, the CDC decided to call the HIV-negative, AIDS-like disease "ICL" (an abbreviation of the tongue twisting "idiopathic CD4-positive T-lymphocytopenia," which means, simply, an unexplained loss of T4 cells).

National Cancer Institute researcher Dr. Robert C. Gallo and his colleagues made an astonishing assertion in the Nature study: They reported that a virus found to be actively growing in both AIDS and Chronic Fatigue Syndrome patients, Human Herpes Virus 6 (HHV-6), infects and kills natural killer cells. Moreover, according to the report from the Gallo laboratory, HHV-6 is the only virus known to be able to do that. (Is CFIDS related to AIDS: http://www.fms-help.com/aids.htm)

Yet when renaming M.E – all this evidence was again ignored. Most people on the CFS rename committee were against the name including Dr. Alexis Shelekov (NIH and Salk Institute, 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.

Patients are to the present day resentful of the name CFS and organisations are still campaigning to congress and their respectful nations Government’s for an official name change as they believe it belittles the severity of the disease, as M.E is characterized by many severe symptoms alongside fatigue, therefore patients with real neurological Myalgic Encephalomyelitis, Lyme’s disease, depression, adrenal stress, borderline thryoidism, anaemia, general fatigue/burnout, stress and even M.S – basically any condition that causes fatigue are being dumped in the same dustbin.

What has emerged is that the terms CFS and M.E are used interchangeably, incorrectly and confusingly (Basset, 2009: Who benefits from ‘CFS’ and ‘M.E/CFS’?). As defined by Basset, Chronic Fatigue Syndrome and Myalgic Encephalomyelitis are distinctly different in classification:-

Chronic Fatigue Syndrome is an artificial construct created in the US in 1988 for the benefit of various political and financial interest groups. It is a mere diagnosis of exclusion (or wastebasket diagnosis) based on the presence of gradual or acute onset fatigue lasting 6 months. If tests show serious abnormalities, a person no longer qualifies for the diagnosis, as ‘CFS’ is ‘medically unexplained.’ A diagnosis of ‘CFS’ does not mean that a person has any distinct disease (including M.E.). The patient population diagnosed with ‘CFS’ is made up of people with a vast array of unrelated illnesses, or with no detectable illness. According to the latest CDC estimates, 2.54% of the population qualify for a ‘CFS’ (mis)diagnosis.  Every diagnosis of ‘CFS’ can only ever be a misdiagnosis. 

Myalgic Encephalomyelitis is a debilitating neurological disease which has been recognised by the World Health Organisation (WHO) since 1969 as a distinct organic neurological disorder with the code G.93.3. It can occur in both epidemic and sporadic forms, over 60 outbreaks of M.E. have been recorded worldwide since 1934. M.E. is a systemic neurological disease initiated by a viral infection. M.E. is characterised by (scientifically measurable) damage to the brain, and particularly to the brain stem which results in dysfunctions and damage to almost all vital bodily systems and a loss of normal internal homeostasis. Substantial evidence indicates that M.E. is caused by an enterovirus. The onset of M.E. is always acute and M.E. can be diagnosed within just a few weeks. M.E. is an easily recognisable distinct organic neurological disease which can be verified by objective testing. If all tests are normal, then a diagnosis of M.E. is incorrect.

The distinct neurological disease known since 1956 as Myalgic Encephalomyelitis has a similar strike rate to multiple sclerosis. M.E. can be extremely disabling, or sometimes fatal. M.E. is a chronic/lifelong disease that has existed for centuries. It shares significant similarities with multiple sclerosis (MS), Lupus and polio. There are more than 60 different neurological, cognitive, cardiac, metabolic, immunological, and other M.E. symptoms. Fatigue is not a defining or even essential symptom of M.E. People with M.E. would give anything to be only severely ‘fatigued’ instead of having M.E.

Millions of pounds and dollars have been wasted studying the outcomes of Cognitive Behaviour Therapy (CBT) and Graded Exercise Therapy (GET) on vague patient cohorts comprising of mixed fatigue groups such as the recent PACE trial. This type of research has been purposely constructed by those with vested interests, desperate that their view of M.E is the only one the world is allowed to see; its results doubtful to benefit any patient groups as we have seen from the PACE results. Professor Peter White himself sits on the Medical Research Council expert group and his colleagues on the NICE Guideline Development Group, ensuring no real scientists or researchers put the truth about M.E forward.

Through the Government funded “Fatigue Clinics”, the NHS have forced inappropriate treatment protocols onto M.E patients, further harming them resulting in needing more extensive medical care.

As stated by M.E expert Paul Cheney “The most important thing is not to have patients do aerobic exercise. I believe that even progressive aerobic exercise is counter-productive. If you have a defect in Mitochondrial Function and you push the mitochondria by exercise, you kill the DNA. (Paul Cheney, Professor of Medicine, Capital University, USA: Presentation in Orlando, Florida, February 1999 at the International Congress of Bioenergetic Medicine.)”

Yet Professor Michael Sharpe advises the British Government that,

“Exercise therapy may be considered for patients who are physically inactive". (Chronic fatigue syndrome and occupational health.  A Mountstephen and M Sharpe Occup Med 1997:47:4:217-227)

At the same time as the CDC changed their definition of M.E, a notorious and renowned psychiatrist was in essence “rising to power” to assert his prominence and authority over the world of M.E and change its course forever.

I am of course referring to Professor Simon Wessely of Kings College, London and the Institute of Psychiatry, who first made waves in his publication “Postviral Fatigue Syndrome: Time for a New Approach" in the British Medical Journal. Wessely states, “Hysteria itself is an outmoded diagnosis and is being replaced by the concept of "abnormal illness behaviour." This takes account of the interaction between "organic" illnesses and psychiatric symptoms and a more sensitive appreciation of how social factors govern the presentation and outcome of illness. It is a better description of the often fraught interplay between sufferers with the post-viral fatigue syndrome and their doctors." (1988, March 5: David AS, Wessely S, Pelosi AJ)

Sadly for sufferers, more famous publications such as “Chronic Fatigue and its Syndromes” became the bible for M.E, even being used as educational literature in medical schools, in 1999 and sometime shortly, Wessely became an advisor to the Government and various Insurance Companies.

I could go on for pages citing references Wessely has made against the M.E community and how he was involved in the near drowning of a paralysed child with M.E but one can search that for themselves.

The important point to note here is that Wessely’s theories blended in perfectly with the CDC definition of M.E – effectively erasing Ramsay’s M.E definition and replacing it with a notion that meant patients like Lynne Gilderdale and Sophia Mirza would die at the hands of the system.

These theories spurred the Royal Colleges Report in 1996 which showed its bias towards the psychiatric profession being that the Royal College of Psychiatrists were the ones asked to set the committee up, not the Royal College of Physicians.  A letter was sent to ForT by the Registrar of the Royal College of Physicians 24 July 1998 stating, 'Although the working party met in this College it was not responsible for its establishment, the lead being taken by the Royal College of Psychiatrists'. (http://www.erythos.com/rime/ForT.html)

And so it begins.

The report contained some delightful quotes, full of medical accuracy, such as,

“Some would prefer to continue to use the term M.E. It has been suggested that ‘the merits of the term M.E are that it emphasises the physical aspects of the condition’.10 However, encephalomyelitis describes a distinct pathological process of inflammation of the brain and spinal cord. The term M.E thus erroneously endorses the existence of a specific pathological process for which in the context there is no evidence.” I repeat that Sophia Mirza’s autopsy showed severe inflammation at the root of ganglia.

“It has been suggested that there is a wide group of disorders, which fall under the term CFS, that are predominantly psychosocial, and a core called M.E, which is more severe, has a characteristic pattern of fatigability and is primarily of organic origin. We do not agree. There is no evidence that mild forms of CFS are primarily psychological and severe forms are more likely to be organic in origin.”

“The authors say that 75% of CFS controls have affective or psychiatric disorder”

“…detailed laboratory investigation is largely unhelpful in anyone with fatigue lasting more than 6 months.'  The authors always urge against over-interpreting the physical abnormalities: virology (5.5); muscle pathology (6.5); neuroimaging (7.13); immunology (8.9).  Emphasis, instead, is always on psychological/psychiatric factors (8.16).  'Chronicity is likely to be associated with perpetuating factors unaddressed psychological issues.”

The policy of the Government was quite transparent. As stated by Paul Davis of RIME,

“Following the National Task Force Report on CFS/ME 1994 which had called for research into ME, get a panel of psychiatrists and like-minded doctors together and muddy the waters as much as possible: mix ME up with CFS; make a case that the majority have psychiatric disorder; and recommend more psychiatric treatment - GE/CBT... ; shouldn't cost too much and will protect the insurance/pension sectors and not offend the chemical, pharmaceutical industries?”. (http://www.erythos.com/rime/ForT.html)

When looking at Professor Wessely’s published literature, it is apparent that Wessely appears to be concerned about what he regards as the waste of society’s resources on those whom he believes do not merit the expenditure of such resources, which seems to include the expenditure of NHS resources entailed in investigating those with M.E.  Instead, he advocates a regime of “behavioural modification”.  The Government have approved this plan and it now appears that what begun under a Conservative government will continue under a Conservative government – the state approving policy that dictates M.E is a behavioural disorder despite the fact that millions of people are denied the benefits they need to survive. Already we are seeing draconian changes to the benefits system and whistleblowers from the Department for Work and Pensions admitting it is Government policy to set inconceivable targets for job centres intending to deliberately push people below the breadline.

The individuals that stand to gain from invention of the illness ‘M.E/CFS’ are the very same individuals who promote the theory that M.E is a psychological illness. I do not deem it occurred merely by chance that Professor Simon Wessely invented the term CFS/M.E, after all this is the man who stated “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” (Wessely, S: 1990, Psychological Disorders in General Medicine) and “it is regrettable that M.E has become a disease of fashion, even fad”. (S.Wessely, P.K Thomas, 1990: Recent Advances in Clinical Neurology P.85-131)

The merging of M.E and CFS into ‘CFS/M.E’ or ‘M.E/CFS’ serves individuals like Wessely very well indeed, particularly when they are advising the Government. This would be the reason why so many of the very worst reports on ME such as the Royal Colleges Report 1996 refer to patients as if they were malingerers who could recover quickly and easily from their mild “fatigue” if they would succumb to the psychological interventions put in place for them. After all it was the 2002 Chief Medical Officer’s report advisor Professor Michael Sharpe, who stated,

“Those who cannot be fitted into a scheme of objective bodily illness yet refuse to be placed into and accept the stigma of mental illness remain the undeserving sick of our society and our health service.”

The CMO then went on to analyse papers purporting to be about M.E stating that they had carried out a review when in fact all they looked at was the medical literature with papers about the amazing efficacy of psychotherapy, especially their own version of graded exercise and cognitive behavioural therapy? Papers by REAL M.E professionals were simply discarded.

Wessely and his colleagues are not stupid. They hoodwink reports such as the recent PACE trial by using different subset criteria entitling them to use correct facts about M.E (for example symptoms, severity etc) whilst incorporating phoney information referring to CFS whilst fudging the consultations as the majority of the statistics such as response to treatment, recovery rates, psychological status, improvement of symptoms were taken from the mixed patient groups which are primarily made up of psychiatric and mildly affected patients, not the severely affected. Therefore the Government get away with saying how successful CBT and GET are and do not amend their Guidelines.

This is why studies such as PACE and SMILE (http://frownatsmile.wordpress.com/author/frownatsmile/) are more dangerous to the M.E patient than authentic psychological ones. By deeming CFS and M.E the same entity and promoting dangerous treatments like the Lightening Process, the truth about ME is becoming furthermore buried  and making it harder to diagnose true M.E from psychiatric fatigue. Patients are therefore being misdiagnosed all over the place and denied the basic right of medical treatment, support and even the basic right of being taken seriously.

So next time you decide to attend your CFS Clinic and fill out colour coded charts detailing your activity level – have a think? Is this treatment really right for someone feeling as ill as I do, or do I deserve proper tests and medicine? Should I push for POTS testing or accept that my dizzy spells and low blood pressure are due to what the clinic tell me, lack of exercise?

Patients need to band together now and form a task force committee forcing the Government to reclassify CFS back to the disease it ought to be, Myalgic Encephalomyelitis.

Instead of things getting better for M.E patients over the noughties with more endeavourers, and researchers becoming closer to solving the mystery, such as Dr Jonathan Kerr’s geonomics research, things took a turn for the worse.

Such is Wessely, White and Sharpe’s power over the Government, the then Labour Government hurried consultation papers through (the Chief Medical Officers Report 2002 of which Sharpe was advisor) and then made one of their colleagues, Professor Anthony Pinching, chair of the NHS CFS/ME Service Investment Steering Group. It was under Pinching that the criteria for these clinics were devised, i.e CBT and GET to help “challenge those abnormal illness beliefs”. Nothing about RNase testing, immunological testing and endocrine treatment – does this not ring strange for a top Immunologist to recommend these things? Pinching and his hastily invested £8.5 million brand new ‘Fatigue Centres” focused on offering “CBT for CFS”. In light of so much medical evidence contradicting the psychosocial model of M.E, the Government believe that by dumbing down the real disease Myalgic Encephalomyelitis into the watered down version called CFS, then patients might not add to the already abashed NHS deficit.

The story gets worse, the RCPCH Guidelines for children, Esther Crawley’s work on the Lightening Process on children, the NHS Occupational Guidelines for Employee’s – all based on the psychosocial model of CFS – no references to the real pathology of M.E.

The UK Government have created a framework which has effectively trapped the M.E patient. Even clinics of old such as the National M.E Centre have succumbed to the CBT/GET model. Barely any doctors offer a multidisciplinary approach to M.E in the UK.

The following list of biomedical facts as researched by the late Dr John.Richardson came apparent, followed by this article in 1978 where Richardson defined M.E as epidemic Myalgic Encephalomyelitis.

 See: http://www.prohealth.com/library/showarticle.cfm?libid=9926

 This is quite old, but in 1978 he defined M.E as, Epidemic Myalgic Encephalomyelitis: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1604957/pdf/brmedj00128-0006b.pdf?forumid=331851 

 I would like to know why these tests were suddenly removed from common practice within the five years of the rise of the Wessey School.

One wonders what happened to this research – perhaps it is buried in the Government Medical Research Archives at Kew – forbidden to be seen until 2071.

However, the puzzle continues. As highlighted by Mindy Keiti on CFS Central, in 1991, a young researcher at the University of Pennsylvania’s Wistar Institute named Dr. Elaine DeFreitas discovers evidence of a retrovirus in the blood of ME/CFS patients.  The CDC, however, fails to find DeFreitas’s retrovirus in patients and controls (without using DeFreitas’s protocol).  Tangling with the U.S. government proves costly to the researcher’s career, which scares off likeminded ME/CFS scientists for nearly 20 years.

One wonders what happened to this research – perhaps it is buried in the Government Medical Research Archives at Kew – forbidden to be seen until 2071.

October 2009: A group of American Scientists at the Whittemore Peterson Institute, Dr Judy Mikovits and Vince Lombardi et al discovered the virus XMRV in 68 out of 101 of CFS patients and 4% of HEALTHY controls from blood donors = 10 million US citizens. Further testing reveals 98% of M.E/CFS patients are infected.

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

June 2010 The Food and Drug Administration and the National Institutes of Health conduct an XMRV study that reportedly finds XMRV in 80 percent of patients with ME/CFS—up from the 67 percent found in the October 2009 Science study. 

August 2010 The long awaited FDA/NIH Alter/Lo study published in PNAS confirmed 86% of M.E/CFS patients infected and and 7% of healthy controls. Alter paper find not XMRV but MRV (Murine Leukemia Retrovirus). Judy Mitovits suggests that this is a family of retroviruses – that there are FOUR not one.

September 2010 Pathogen Hunter Dr Ian Lipkin is designated the role of undertaking an XMRV study for the National Institute of Health.

Still the UK authorities will not accept the differentiation between the infectious nature of ME and CFS, going as far as to run XMRV tests on CFS/psychiatric fatigued patients and scoff when the results are negative.

There needs to be more evidence proving that this disease is in its own entity, distinct from psychiatric based fatigue conditions.

M.E has been associated with a newly discovered retrovirus as well as mycoplasma, chlamydia, borrelia, bartonella and coxiella infections. These bacteria and viruses are infecting people by the thousands but who is claiming responsibility?

Are these infections causing various neuroimmune conditions and the Government are covering it up, hence the locking away of the MRC files?

Why does the NHS not test for spirochete of the borrelia species? Why isn’t the infectious nature of ME being taught at medical school or reported in the mainstream media? Why have the Government given psychiatrists a free reign to reclassify ME, perhaps not through ICD-10 but through the NHS and the media as ‘Chronic Fatigue’ and diagnose patients as having somatisation disorders or abnormal illness beliefs/hypochondria.

The Government is covering the truth about ME up because they simply cannot afford to supply tens of thousands of people with antimicrobials/antivirals/antiretrovirals and fund research into the multi organic pathogenesis of ME.

The Government is still reeling from the swine flu epidemic and the mass error of vaccine supply. Coupled with a deficit and clamp down on the work-shy, the last thing the Government wants to admit is that it has a mass retrovirus on its hands. Cue panic. As long the press and Department of Health continues to dumb down M.E, the truth will stay buried and trials such as the unethical Lightening Process based SMILE on children with M.E will be allowed to proceed, against all contrary evidence. The psychiatrists and doctors promoting these theories for personal gain have no conscience but patient groups will continue to thwart them at every opportunity.

Professor Simon Wessely and his colleagues at St Bart’s and the University of Edinburgh, Professors Peter White and Michael Sharpe, stress in their papers that ME is merely a psychological issue of fatigue caused by abnormal illness beliefs and deconditioning.

These dangerous and flawed theories have spread to Van Kuppleveld at Nimjen in The Netherlands and Prof. Jos van der Meer / Prof. Dr. Gijs Bleijenberg and Prof. van den Houdenhovein in Belgium, creating an army of psychiatrists across Europe maintaining the incorrect assertion that – pushing the real disease Myalgic Encephalomyelitis further and further back into history with less and less hope for treatment and correct guidelines for patients.

The Government and National Health Service deem Wessely and White to be the leading specialists in M.E, running the Kings College and Bart’s Clinics respectfully, but they mix and match the phrase M.E at will with chronic fatigue, fatigue or tiredness plus expressions such as neurasthenia, CFS and ‘CFS/M.E’ (a perplexing and deliberately misleading phrase Wessely created himself). Wessely, White and Sharpe maintain that psychiatric conditions resulting in ongoing fatigue and the neurological disease ME are one and the same. Despite all biomedical evidence to the contrary, Wessely, White, Sharpe and members of their clinics affirm that M.E is a behavioural disorder and discourage testing as the condition is perpetuated by ‘aberrant illness beliefs’ and by ‘the misattribution of normal bodily sensations’ and that patients ‘seek and obtain secondary gain by adopting the sick role’. (Hooper & Marshall 2005)

Professor Wessely and his supporters have diligently made an effort to annihilate all recorded medical history of Myalgic Encephalomyelitis despite all existing evidence and studies having been published in prestigious peer-reviewed journals and span over 70 years. Evidence has been locked away in the National Archives until 2071. Instead, Wessely and his colleagues have infested medical journals with literature that is biased and has no scientific basis in fact. Wessely himself sits on the advisory board at the UK Science and Media Centre ensuring no truth about ME ever enters the media and the only stories editors must run are those written by his own hand.

The M.E Association has even written a letter of complaint to the Science and Media Centre Director, challenging Wessely’s authority and media embargo. http://www.meassociation.org.uk/?p=5041

Sadly what has arisen from Wessely’s power is that most physicians have been disallowed access to real medical literature about M.E and therefore believe what they are told by the powers that be, resulting in patients not being screened for basic diseases such as Liver or Kidney disease as this would only be fuelling the patients “abnormal illness beliefs”. Had Sophia Mirza not been locked away in a psychiatric ward would she have died from chronic renal failure?

In 2000, the WHO Collaborating Centre for Mental Health based at Kings College (Institute of Psychiatry), the home of Professor Wessely himself, attempted to reclassify M.E as a mental disorder in the Wessely authored “Guide to Mental Health in Primary Care”. This guide was subsidised by the Department of Health. Despite M.E being classified under the WHO ICD-10 coding which is obligatory for usage, over 30,000 copies of the guide were distributed.

Eventually the guide was withdrawn but the damage was done. M.E had been wrongly classified as a mental disorder in an NHS Mental Health Data Manual.

Changing the name of Chronic Fatigue Syndrome back to its original title of Myalgic Encephalomyelitis or even suggesting a brand new name for the disease has been the subject of discussion amongst scientists for many years.

The original Name Change Working Group, which comprised of Carol Lavrich, K. Kimberly Kenney, Charles Lapp, John Herd, Daniel Kahn, Susan Levine, Nancy G. Klimas, and Leonard A. Jason was established by the federal CFS Coordinating Committee of the Department of Health and Human Services. Its purpose has been to study name change issues and make recommendations for a new name for "chronic fatigue syndrome."

Fuelled by the findings of the 2009 Science paper and spurred on by the departure of Reeves, there are currently more organisations pushing for a change of name and classification of ME/CFS, including National Coalition 4 ME/CFS, PANDORA, National ME/FM Action Network, IACFS/ME The power of these organisations cannot be underestimated but it is mildly ridiculous to say the least that twenty years on, the classification issue is still being discussed on a ‘to do’ list, a fact pointed out by Nancy Klimas at the State of Knowledge NIH workshop on 7th April 2011. Professor Leonard Jason made the point stated at the Trans-NIH ME/CFS Research Working Group on 7th April 2011 that there were significant classification issues with ME/CFS and that this needed clearing up as a matter of priority.

Even though the CFSCC ceased to be in 2003, the written proposals of the 2001 name-change workgroup were passed onto to the then newly formed Chronic Fatigue Syndrome Advisory Committee (CFSAC). The panel put forward a new name, ‘Neuroendocrineimmune Dysfunction Syndrome’ (NDS) along with indications for much needed classification of sub-groups for the disease – an area that has been poorly researched.

On the 14th October 2010, the Trans-NIH Working Group for Research on Chronic Fatigue Syndrome announced at the CFSAC that they had now incorporated the name M.E into their title. They are now known as the Trans-NIH ME/CFS Research Working Group. This is about as far as the United States has come to addressing the name change issue of Chronic Fatigue Syndrome.

As well as the patients, many throughout the medical community believe the current name, Chronic Fatigue Syndrome, belittles the condition and implies that the illness is wholly about fatigue, and fatigue only, therefore endorsing and encouraging misunderstanding of the illness.

This misunderstanding has lead to doctors mistaking this condition for a psychosocial disorder which has severely impacted on patient care across the globe.

Almost not a day goes by when I don't think about the issue of how to end the social stigma so associated with this disease, chronic fatigue syndrome (CFS).

In April of 2005, a scientist who was present at the 1988 meeting, Dr. Anthony Komaroff, spoke out about the manner in which the decision on the name was made: “None of the participants in creating the 1988 case definition, and the illness name, ever expressed any concern that the name might appear to trivialize the illness. We simply were insensitive to that possibility, and we were wrong. Since “fatigue” is a universal human experience, I’m afraid some people have responded to the word “fatigue” in the name by thinking “I’m tired now and then like everyone, 'Why is this an illness?' ” (http://www.cfidsreport.com/Articles/Op-eds/Jason_CFS.htm) Since that day nothing has changed.

An Internationally Recognised Criteria?

The debate over the Canadian Criteria raged on in July 2011 in the British Medical Journal, with pro psych lobby ‘experts’ Dr Esther Crawley, Alastair Miller and Professor Peter White asserting that, alongside the BMJ editor Fiona Godlee,  (http://www.bmj.com/content/342/bmj.d3956/reply#bmj_el_266989) the adoption of the Canadian criteria to diagnose chronic fatigue syndrome (CFS) is a reasonable request (1). It may be reasonable, but is probably not practicable. These criteria require the assessment of some 65 discrete symptoms and 14 comorbid conditions, before even considering exclusionary conditions (2); a significant burden on both patients and doctors. More worrying is that "symptoms", such as ataxia, "palpitations with cardiac arrhythmias", and "loss of thermostatic stability" count towards the diagnosis, rather than suggesting alternative diagnoses.