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A warning on 'CFS,' 'ICD-CFS' and 'ME/CFS' research and advocacy, By Jodi Bassett and co-authored/ edited by Lesley Ben

Posted Apr 28 2009 11:25am
I have decided to post the newest paper written by Jodi Bassett from A Hummingbirds Guide to Myalgic Encephalomyelitis (www.ahummingbirdsguide.com). Although I agree in most part with the article, there are some areas I am personally unsure about, so I ask you to study the work carefully and use the information to form a clearer picture of what is going on within the ME community. Jodi has researched the area fully and understands a lot more than most but is by no means a medical specialist. What she can do is alert newly diagnosed individuals of the danger of believing in the diagnosis of Chronic Fatigue Syndrome (CFS). All it takes is a few individuals to educate our doctors and those around us and the message will begin to get across to the wider population.

The message I would like to get across today is that CFS is not a diagnosis. Do not accept it as one, push for further tests to confirm your diagnosis. Often once the medical practitioner has reached a diagnosis of Chronic Fatigue Syndrome they will stop performing tests. This is purely because NICE states that NO FURTHER TESTS SHOULD BE PERFORMED. If you accept this diagnosis you will never know what is actually wrong with you and you will likely have your medical record marked as an individual with a mental health illlness. You will also not receive the appropriate treatment for your illness.

For links to the papers mentioned in this article you will need to link to the highlighted piece at the end of this paper.

*please repost* *please repost* *please repost* *please repost* *please
repost*

A new (brief) paper is available:

A warning on 'CFS,' 'ICD-CFS' and 'ME/CFS' research and advocacy, By Jodi
Bassett and co-authored/ edited by Lesley Ben

The various definitions of 'CFS' do not define M.E. Myalgic Encephalomyelitis is an organic neurological disorder; the definitions of 'CFS' do not reflect this. The 'CFS' definitions are not 'watered down' M.E. definitions, as some claim. They are not definitions of M.E. at all.

Ever since an outbreak of M.E. in the US was given the label 'CFS,' the name/definition 'CFS' has prevailed for political reasons. 'CFS' is widely though wrongly applied to M.E. as well as to many other diseases. The question for M.E. patients is whether any of the research on 'CFS' may be
relevant to them/their disease

The overwhelming majority of research on 'CFS' or 'CFIDS' or 'ME/CFS' or 'CFS/ME' or 'ICD-CFS' does not involve M.E. patients and is not relevant in any way to M.E. patients. (For discussion of 'ICD-CFS,' see 'What does the term ICD-CFS mean?') These terms and concepts are often used to describe all those patients with Lyme disease, various post-viral fatigue syndromes, burnout, adrenal exhaustion, depression and so on. These terms and concepts
are meaningless and are used to refer to very different, and often very mixed, patient groups.

Research which may involve M.E.

Whether influenced by political considerations surrounding the name/definition 'CFS' or not, however, some researchers have produced a very small amount of research under the name 'CFS' which involves at least some M.E. patients, as this research details those abnormalities which are unique to M.E.

It is important to be aware of the research findings that do hold some value for M.E. patients, although it may be difficult to distinguish these from valueless 'CFS' research. A very small number of 'CFS' studies refer in part to people with M.E. but it may not always be clear which parts refer to M.E.

The research referred to on this website varies considerably in quality. Some is of a high scientific standard and relates wholly to M.E. and uses the correct terminology. Other studies are included which may only have partial or minor possible relevance to M.E., use unscientific terms/concepts such as 'CFS,' 'ME/CFS,' 'CFS/ME,' 'CFIDS' or Myalgic 'Encephalopathy' and
also include a significant amount of misinformation. Before reading this research it is essential that the reader be aware of the most commonly used 'CFS' propaganda, as explained in: Putting Research and Articles on Myalgic Encephalomyelitis into Context.

The issues discussed here apply not only to research, but also to politics, advocacy and discussion; a very small amount of what is done in the name of 'CFS' or 'CFIDS' or 'ME/CFS' may be relevant to M.E. Most of it is not relevant to M.E. and may severely harm the interests of M.E. patients (and other patients misdiagnosed with 'CFS').

Assessing 'CFS' research: a checklist

List of characteristics associated with M.E. (suggesting that the research is, to some extent, studying M.E.):

a.. Acute onset (associated with a virus; an enterovirus)
b.. The disease occurs in outbreaks as well as sporadically (the incubation period of the virus is 4-7 days)
c.. Damage to the central nervous system (which is observable on brain scans, and which is similar to MS)
d.. Consequences of neurological damage such as loss of homeostasis in many of the body's systems
e.. Abnormalities seen on many different objective tests (including ESR tests, NK cells tests, Holter monitors and physical exam) within weeks of disease onset
f.. Seizures and paralysis
g.. Cognitive dysfunction, involving concentration, memory and perceptual problems
h.. Sensory disturbance and over-sensitivity
i.. Reduced circulating blood volume and associated problems such as orthostatic intolerance, neurally mediated hypotension and POTS
j.. Cardiac abnormalities such as tachycardia and reduced cardiac function
k.. Mitochondrial dysfunction, resulting in loss of energy production, and impaired immunity and cellular repair capability
l.. Immune dysfunction
m.. Delayed effect following physical, mental or sensory overexertion (24 to 72 hours or more)
n.. Worsening of illness, serious relapse or possibly death following overexertion
o.. Severe disability lasting many years (most often lifelong) which may also result in death

Modern M.E. research tallies closely with historical M.E. research and data from the world's most experienced M.E. experts such as Dr Ramsay, Dr Richardson, Dr Dowsett and Dr Hyde.

Research/advocacy articles by Dr Ramsay, Dr Richardson, Dr Dowsett and Dr Hyde are highly recommended. Medical information by Dr Cheney is most likely of interest, although Dr Cheney cannot be described as a M.E. expert as he unfortunately mixes the facts about M.E. and 'CFS' in his work. (See: Is Cheney talking about M.E. or 'CFS'? and also MERGE/MERUK, 'ME/CFS' and
'CFS.')

List of characteristics associated with 'CFS' (indicating that the research is looking at mixed 'CFS' patient groups and is useless for M.E. patients):

a.. Gradual onset
b.. Onset following overwork or stress
c.. Onset following EBV infection (or other common viruses including flu, Ross River virus, hepatitis infections and so on)
d.. Fatigue or exhaustion (as the defining or most severe symptom of the illness) or symptoms referred to as vague and 'everyday' type symptoms
e.. Omission of the serious neurological and cardiac (and other) dysfunctions which define M.E.
f.. Emotional state, personality type or psychological history associated with causing or prolonging illness
g.. Short duration of illness and/or naturally resolving illness after a short period of time or illness which resolves or improves with exercise
therapy, psychotherapy or antidepressant drugs (or similar)
h.. Mild illness which cannot result in death

Research which discusses subtypes, subsets or subcategories of 'CFS' or 'CFS/ME' or 'ME/CFS' etc. is not relevant to M.E. These so-called subgroups merely define different groups of patients misdiagnosed with 'CFS' or 'ME/CFS.' These are not M.E. patients; they are patients who urgently need to be given their correct diagnosis of Lyme disease, Candida, MCSS, PTSD, depression, and so on.

Articles which support concepts such as renaming 'CFS' as 'ME/CFS' (or similar) are also unhelpful, not relevant to M.E. and should not be considered a genuine contribution to M.E. activism. This strategy benefits only the same vested interest groups which benefitted from the creation of 'CFS.' (See: Who benefits from 'CFS' and 'ME/CFS'? and Problems with the
so-called "Fair name" campaign.)

Unfortunately, while many advocacy groups started out doing excellent work to improve things for M.E. sufferers, today this is no longer true in most cases. Very nearly all of these groups which started out determined to fight against the bogus 'CFS' propaganda and the abuse of science and ethics, are now actively SUPPORTING it. They have sold patients out to the highest
bidder. Thus information provided by almost all so-called advocacy groups in this field should not be trusted or assumed in any way to be useful or accurate or in the best interests of patients. This particularly applies to information given by AfME and the MEA in the UK, the two largest CFIDS groups in the US, and each of the state 'CFS/ME' or 'ME/CFS' societies in Australia, for example. For more information see: Problems with 'our' M.E. (or 'CFS' 'CFIDS' or 'ME/CFS' etc.) advocacy groups, Problems with the so-called "Fair name" campaign, On the current (worrying) state of Australian 'CFS/ME' societies and M.E. advocacy and 'CFS' advocacy are not
the same.)

Research which is funded by the NIH or CDC in the US or the MRC in the UK is virtually always irrelevant to M.E. The same applies to research involving Wessely, Sharpe, Cleare, Aylward, White, members of the Nijmegen group, Lloyd, Hickie, and their colleagues and collaborators. (See: Who benefits from 'CFS' and 'ME/CFS'?)

Problems with this heterogeneous and skewed research

A very small number of 'CFS' studies refer in part to people with M.E. but it is not always clear which parts refer to M.E. Unless studies are based on an exclusively M.E. patient group, results cannot be interpreted and are meaningless for M.E. Virtually all of the 'CFS' or 'ICD-CFS' or 'ME/CFS' research which does relate to M.E. (at least in part) is also significantly contaminated by 'CFS' propaganda.

Note that if the various 'CFS' criteria are strictly followed, those patients with the neurological disease M.E. (who will always exhibit unambiguous signs of organic disease) will be excluded from study as 'CFS' describes a syndrome which is always 'medically unexplained. '

Often the research that offers a glimmer of genuine hope to Myalgic Encephalomyelitis patients is research into diseases that share significant similarities with M.E. including Alzheimer's, Polio, Parkinson's, AIDS, Lupus, Multiple Sclerosis and so on. (Alzheimer's, Parkinson's and Multiple
Sclerosis are listed along with M.E. under 'Diseases of the nervous system' in the ICD Classifications. ) These studies have far more relevance to M.E. patients than almost all of the 'CFS' studies produced which lack scientific merit and use exclusively or almost exclusively non-M.E. patient groups.

Why not reject all 'CFS' research?

It may be tempting for people who understand this situation to reject/ignore all work on/discussion of 'CFS' altogether, as not being relevant to M.E. However, a blanket rejection of all parts of all 'CFS' research could be just as dangerous as a blanket acceptance of all bogus 'CFS' research. Some 'CFS' labelled research does undoubtedly involve M.E. patients and does
describe those abnormalities/ characteristics unique to M.E. patients, and so may be of use to M.E. patients in search of practical help.

If the M.E. community were to reject all 'CFS' labelled research as 'only relating to 'CFS' patients' (including research which describes those abnormalities/ characteristics unique to M.E. patients), this would seem to support the myth that 'CFS' is just a somewhat 'watered down' definition of M.E. and that M.E. and 'CFS' are virtually the same thing and share many
characteristics. This is the number one myth that causes so much confusion and leads to so much abuse and needless extra suffering and deaths. The M.E. community cannot afford to give any support to this myth, lest we further entrench our own abuse (and the abuse and neglect of all those misdiagnosed with 'CFS' who do not have M.E.).

In future, it is essential that M.E. research again be conducted using only M.E. defined patients and using only the term M.E. The bogus, financially- motivated disease category of 'CFS' must be abandoned for the benefit of M.E. patients and all other patient groups involved. The M.E.
community must work uncompromisingly towards these goals.

------------

Notes:

a.. Note that virtually all of the research which does relate to M.E. (at least in part) but which uses the term 'CFS' (or 'ME/CFS,' or' CFIDS' etc.) is also contaminated in some way by 'CFS' misinformation. Most often these papers contain a bizarre mix of facts relating to both M.E. and 'CFS' and imply that M.E. and 'CFS' represented one and the same patient group. For
information on some of the most common inaccuracies and 'CFS' misinformation included in (to some extent) M.E. relevant research, see the paper: Putting Research and Articles on Myalgic Encephalomyelitis into Context

Not all those involved with 'CFS' have vested financial and political interests, yet often these non-vested-interest groups still also produce flawed, psychiatrically biased and 'fatigue' based
information. Unfortunately these other groups have been unduly swayed and manipulated to varying extents by the enormous amount of superficially legitimate information widely disseminated by such powerful vested groups and individuals. Some researchers have seemingly been taken in entirely by such scientifically unsupportable theories, as have the large majority of
the world's journalists and politicians (albeit with some notable exceptions). Even some of the best research on the illness is shrouded in heavy usage of misleading and propagandising language and false statements which often bizarrely contradict the harsh realities uncovered in the studies themselves, unfortunately.

b.. Note that whether or not a study or activism article is relevant to M.E. cannot unfortunately be determined by examining terminology alone as the terminology of M.E. and 'CFS' etc. is often used interchangeably, incorrectly and confusingly.

c.. Although the terminology is often used interchangeably, incorrectly and confusingly, the DEFINITIONS of M.E. and 'CFS' are very different and distinct. It is the definitions of each of these terms which are of primary importance. The distinction must be made between terminology and definitions.

1. Chronic Fatigue Syndrome is an artificial construct created in the US in 1988 for the benefit of various political and financial vested 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.

2. Myalgic Encephalomyelitis 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. cannot be correct. M.E. can occur in both epidemic and sporadic forms and can be extremely disabling, or sometimes fatal. M.E. is a chronic/lifelong disease that has existed for centuries. It shares similarities with 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 nor even essential symptom of M.E. People with M.E. would give anything to be only severely 'fatigued' instead of having M.E. Far fewer than 0.5% of the population has the distinct neurological disease known since 1956 as Myalgic Encephalomyelitis.

The only thing that makes any sense is for patients with Myalgic Encephalomyelitis, to be studied ONLY under the name Myalgic Encephalomyelitis - and for this term ONLY to be used to refer to a 100% M.E. patient group. The only correct name for this illness - M.E. as per Ramsay/Richardson/ Dowsett and Hyde - is Myalgic Encephalomyelitis. M.E. is not synonymous with CFS, nor is it a subgroup of CFS. (There is no such disease/s as "CFS.') To read a referenced version of this text, see: What is M.E.?

d.. To read more about the vast difference between M.E. and CFS (and how such a small (but powerful) group of vested interest psychiatrists have come to influence the opinions of the worldwide medical community about M.E.) see: Who benefits from 'CFS' and 'ME/CFS'? and What is M.E.? or What is M.E.? Extra extended version.

e.. For further details of the WHO ICD classifications of M.E. and 'CFS' worldwide (and why terms such as 'ICD-CFS' and 'ME/CFS' must be avoided) please see the paper by Lesley Ben entitled: The World Health Organization' s International Classification of Diseases (WHO ICD), ME, 'CFS,' 'ME/CFS' and 'ICD-CFS.'

f.. M.E. is similar in a number of significant ways to multiple sclerosis, Lupus and poliomyelitis (polio). See the new paper: M.E. vs MS: Similarities and differences

g.. Those patients (mis)diagnosed with 'CFS' (and who do not have M.E.) are advised to read the following papers: The Misdiagnosis of 'CFS' and Where to after a 'CFS' (mis)diagnosis?

h.. To read a list of all the articles on this site suitable for different groups such as M.E. patients, carers, friends and family, the 'CFS' misdiagnosed, doctors or severe M.E. patients and so on, see the Information Guides page.

-----------

A link to this paper, along with a very short summary of it, will soon be added to all pages on the site where any type of 'CFS' or 'ME/CFS' research or advocacy writings are listed/featured.

To view this paper, or to download a copy in Word/PDF format, see:
http://www.ahumming birdsguide. com/warningoncfs research. htm

Please link to this paper using the above link only as only this page will be updated over time. Please view this paper on the site to enable the links in the text to be visable and clickable.

Best wishes,
Jodi Bassett
--
A Hummingbirds Guide to Myalgic Encephalomyelitis: www.ahummingbirdsguide.com
--
Do not for one minute believe that CFS is simply another name for Myalgic Encephalomyelitis (M.E.). It is not. The CDC 1988 definition of CFS describes a non-existing chimera based upon inexperienced individuals who lack any historical knowledge of this disease process. Any disease process that has major criteria, of excluding all other disease processes, is simplynot a disease at all; it doesn't exist. Dr Byron Hyde 2006
--
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