Why the separation of ME from CFS is long overdue
Myalgic Encephalomyelitis, a neurological disease with multi-system dysfunction is continuing todisappear from view, lost in a fatigue focus that does not clinically represent the reality of this severely disabling chronic disease.
There should, you would think, be no compromise on identifying and separating Myalgic Encephalomyelitis from other conditions and recognising the need for a full medical service with a biomedical pathway, for people with Myalgic Encephalomyelitis (ME).
This is sadly not the case and that has profound implications for those people who have ME especially the most severely affected, who are so isolated as to be almost invisible to health services, social services and society generally, too ill to engage with them.
It is unlikely that anyone outside the situation really know what life is like for people with Severe and Very Severe ME, who are house and or bed bound, unable to interact in a normal way and separated from ordinary life by acute environmental hypersensitivity.
Because of this continuing lack of separation between neurological Myalgic Encephalomyelitis and generalised fatigue conditions which include people with a range of illnesses, physical and mental health, people with Severe ME are easily open to be:
Regrettably, since the label of CFS was conjoured up, in 1988, then added to the disease ME with a forward slash, people now use the term ME/CFS to mean ME. Although the composite term “ME/CFS” is widely used internationally, it is essential that people understand that Myalgic Encephalomyelitis and ‘Chronic Fatigue Syndrome (CFS)’ are not necessarily synonymous terms.
And that different practitioners may use the term to mean different things.
Around the world, illnesses are classified under an official system termed the International Classification of Diseases (ICD). Myalgic Encephalomyelitis (ME) is formally classified as a neurological disorder(ICD10:G 93.3; WHO 1992) whilst “CFS”, which only came into existence in 1988, is acknowledged as a colloquial, not an absolute term to represent ME, which has been documented in the medical literature from 1934.
ME/CFS, in short, may or may not refer to ICD10:G 93.3; WHO 1992; depending upon the knowledge and assumptions of the person using the term and which criteria they rely onto identify the illness. It is important to understand therefore that this composite term most likely includes a range of illnesses far wider than the original disease, having different triggers and needing very different treatment pathways potentially. It may unfortunately also include those with a psychological illness, due to the deliberate use of poor, minimal criteria by psychiatry.
Few GPs and paediatricians have sufficient knowledge of the illness. Most of the professional literature ME suggests that ME is a functional somatic syndrome and does not recognise the WHO definition of ME as neurological. The Chair of the Royal College of Physicians, Dr Clare Gerada, acknowledged in 2013 that very few GPs fully understand ME. (Vallings 2013)
This has caused untold damage and distress to countless people with ME over the years, who have been abandoned by the Health Service, left to cope, on their own, often for decades on end , with no tests, treatment or hope- as a result of a deliberate cover up, according to Professor Malcolm Hooper (2012)
It is important to understand the history of the disease and the paths taken to undermine its physical reality by various groups of people, in order to understand why it is all such a mess and confusion now.
ME, according to the late, great Dr Betty Dowsett is “initiated by one or more of a related group of enteroviruses.” In 2013 the John Richardson Group stated : “Enteroviruses : ubiquitous in nature, are responsible for a variety of human diseases ranging from mild gastroenteritis to fulminating multi-organ failure. They were and remain the cause of Myalgic Encephalomyelitis and it is no surprise that this disease has multi- organ involvement with protean manifestation. ”
Sadly the focus on the underlying cause of ME as enteroviral has been neglected and lost in a sea of other viral diseases and assorted poorly identified conditions, rare diseases and other illnesses and diseases which could and should be separately identified in their own right, with their own investigations and treatment pathways, such as Epstein Barr Virus and Lyme disease.
Until the underlying, enteroviral cause of the disease is tested for and again widely recognised and separated out, people will continue to treat ME as a generalised name for a range of illnesses. Even if they ignore the psychological inclusion, they will still be focusing upon a wide range of viral and bacterial infections; a very dangerous presumption due to the different ways they might affect the body and the possible need for very different treatment protocols . It is urgent that a proper test be developed to identify who has which illness, rather than focusing on a few, minimal symptoms that do not clearly or safely define anyone.
It might come as a surprise to many, to discover that such a test existed: the VP1 blood test. In his Medical Address at the AGM of the ME Association on 25th April 1987, James Mowbray, Professor of Immunopathology, St Mary’s Hospital Medical School, London, who developed theVP1 enteroviral test to help identify ME said: “we have been able to find a very large fraction of the ME patients have got an enterovirus antigen….Just because you find virus proteins in the blood, does that mean they are infected? Yes, it does….The virus is present in the intestine. It is also shown to be present in the muscle...What does it do in the muscle?….(It) does the thing that viruses usually do, they infect the cell and take over.....”.
VP1 stands for Viral Protein 1 and in 1988 the ME Association offered the test to its members for an administration fee of £3. This must have been an exciting and hopeful time for people with ME.
In 1998 Dr Byron Hyde referring to the VP1 test said: “ME patients with a positive VP1 test become chronic, whilst those with a negative VP1 test recover. “
Despite this, the VP1 test was dismissed by psychiatrist Simon Wessely as “unsuitable for routine clinical use” [Lancet 1989:1:1028-9] and is no longer available in the UK.
It is difficult to understand the MEA’s 2001 letter to the Chief Medical Officer confirming their opposition to testing for RNase L and other anti-viral pathways, all of which provide evidence of the biomedical nature of ME and their decision on 20th January 2005 not to campaign on finding a diagnostic test. Given that in the July 2004 of ME Essentials the MEA lent its support to the use of the now discredited Oxford Criteria to identify PACE Trial participants, it leads one to question their conception of “ME”, as does Action for ME’s long alliance with the psychiatric lobby; ME patients, it seems, have been done an incredible disservice by their representatives, the harm done is immeasurable, leaving people floundering in a hostile climate with ineffective health support.
It is important to look at the history of ME and the work of Melvin Ramsay and the other great pioneers such as Betty Dowsett, in order to get a clearer understanding and better recognition of the disease Myalgic Encephalomyelitis and the relevant symptoms. It also highlights why there is such a need to withdraw from the fatigue focus and start researching the specific disease. Pauline Ovenden has written an extraordinarily moving and powerful personal account of Ramsay’s involvement at the Royal Free and how “mass hysteria” came to wrongly be associated with ME, paving the way for the decades long attempt by psychiatry to label ME patients as the “undeserving sick” of our society.
ME patients, they assert, complain of physical symptoms that do not result from underlying physical disease but are the consequence of abnormal illness beliefs and those abnormal beliefs are responsible for the perpetuation of their perceived disability). (cf Hooper and Williams 2010) In 1956, Dr. A. Melvin Ramsay formally coined the name “myalgic encephalomyelitis” to describe the 1955 Royal Free epidemic which affected 197 nurses, doctors and ancillary staff causing the hospital to close until October that year. (Parish J 1978)
According to Ramsay 43% of his ME patients had ocular palsy and 19% facial palsy: "The clinical impression was of a disease producing a diffuse disorder of the nervous system with a combination of irritative and paralytic signs which were frequently transient. " Yet paralysis in ME, as we have written often, is basically ignored nowadays or downplayed and not recognised as a symptom of ME. All the time that is the case, people with Severe ME, a smaller, more succinct group, will continue to be failed, will continue to receive little recognition, will continue to receive little or no medical or clinical support or will be exposed to wrong treatments and greatly harmed, while health services will continue to focus on vague fatigue symptoms and look at arrange of illnesses under ME/CFS, a useless umbrella term.
In 1986 Ramsay, who followed many of those who fell chronically ill during the 1955 epidemic for up to 34 years, until he died in 1989 (Hyde 1998), commented: “the too facile assumption that such an entity-despite a long series of cases extending over several decade -can be attributed to psychological stress is simply untenable.”
ME patients, for example, report worse pain than patients with rheumatoid arthritis or multiple sclerosis, conditions in which pain is recognised as a major symptom (Marshall et al 2010 ). ME has a greater impact on functional status and well being than other chronic diseases such as Cancer, (Nacul et al 2011)
There was a time before the mid-1980's, when ME was taken so seriously that an ME Bill was put before Parliament. The Bill required an annual report to Parliament: It shall be the duty of the Secretary of State (for Health) in every year to lay before each House of Parliament a report on the progress that has been made in investigating the causes, effects, incidence and treatment of the illness known as ME. Hansard (House of Commons) for 23rd February 1988 at columns 167-168 records: There is no doubt that ME is an organic disorder. The sufferers are denied proper recognition, misdiagnosed, vilified, ridiculed and driven to great depths of despair. (Williams 2010)
Carruthers et al explicitly called four years ago for the separation of ME from CFS, pointing out that “Myalgic encephalomyelitis, a name that originated in the 1950s, is the most accurate and appropriate name because it reflects the underlying multi-system pathophysiology of the disease."
The separation is long overdue. The dire situation today is exemplified by Pendergrast et al’s (2016) recent study of housebound versus non house bound patients, with different groups of people in different countries compared, without any certainty they have the same disease. Of concern, one cohort simply self diagnosed rather than being clinically diagnosed, questioning the reliability of diagnosis and the compatibility for comparison in the first place.
The authors themselves admit that there was a good chance that the study did not include those with the most severe cases of “ME/CFS”. Such an important omission. It is when it comes to severity that the ME/CFS connection, that never should have been in the first place, collapses in absurdity; its contradictions are overwhelming.
ME Awareness Day 2016
Hooper M & Williams M (2010) Magical Medicine :How to make a disease disappear http://www.meactionuk.org.uk/magical-medicine.pdf
Hooper M (2012)Professor Simon Wessely’s award of the inaugural John Maddox Prize for his courage in the field of ME and Gulf War Syndrome
Professor Malcolm Hooper (with members of the ME community) 12th November 2012 http://www.meactionuk.org.uk/Wessely_John_Maddox_Award.htm
Hyde B ( 1998) Are Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Synonymous Terms? Nightingale Research Foundation Paper Presented by Byron Marshall Hyde M.D. - New South Wales, February 1998
John Richardson Group (2013) The Way Forward http://www.meresearch.org.uk/wp-content/uploads/2012/11/The-Way-Forward-Final.pdf
Nacul et al (2011) The functional status and well being of people with myalgic encephalomyelitis/chronic fatigue syndrome and their carers. Public Health. 2011 May 27;11:402
Ovenden P (2005)A personal account of the outbreak of ME at the Royal Free Hospital.
Parish, J. (1978) 'Early outbreaks of 'epidemic neuromyasthenia,' Postgrad, Medical Journal, 54: 711-717. A New Clinical Entity? Leading Article. Lancet 1956: 789-790
Pendergrast et al (2016) Housebound versus nonhousebound patients with myalgic encephalomyelitis and chronic fatigue syndrome http://www.meaction.net/2016/05/09/study-housebound-versus-nonhousebound-patients-with-mecfs/
Vallings R (2013) CONFERENCE REPORT : IMEC8 – Infection, Immunity and ME – Mainstreaming ME Research 31 May 2013, Westminster, London http://www.investinme.org/IiME%20Conference%202013/IIMEC8%20Conference%20Report.htm
Williams M ( 2007) Psychiatrists Paid by Outside Interests
Extracts from “CORPORATE COLLUSION?” by Margaret Williams
Williams M (2010) Evidence that the official UK position is that ME/CFS is a neurological disorder http://www.mecfsforums.com/wiki/Evidence_that_the_official_UK_position_is_that_ME/CFS_is_a_neurological_disorder
Williams M (2011) Professor Mowbray . “Grey” Information about ME/CFS Compiled by Margaret Williams April 2011 http://www.meactionuk.org.uk/Grey-Information-on-ME-CFS.htm