The wikipedia is a first port of call for most computer literate people =
looking for introductory information on a subject. It used to have a =
very interesting and balanced article on CFS. Not any more.
There are a number of things I would like ME and CFS advocates to be =
aware of:
1. There is no entry for myalgic encephalomyeltis. You are redirected to =
CFS.
2. The linked section on pathothophysiology has a strong bias toward the =
biopsychosocial, with headings on: psychoneuroimmunological =
interactions; pschological and psychosocial (subheadings: behaviour; =
cognitive behavioural model; fixation; illness behaviour; mood =
disorders; sensitization and stress and trauma.
3. Definitions mention Fukuda, Oxford and Canadian, although they do =
mention subtypes. Here is the section on the Canadian, for you to make =
up your own mind:
The 2003 Canadian Clinical working definition[30]-developed "in an =
attempt to exclude psychiatric cases."[31] This definition requires the =
presence of symptoms from at least one category of autonomic, =
neuroendocrine, or immune symptoms. Reviewers of the UK National =
Institute for Health and Clinical Excellence (NICE) 2007 guidelines do =
not recommend using this case definition.[28] The criteria have not been =
validated for research purposes.
The linked section on classifications does give two sentences to the CDC =
88 (Holmes) definition, but with emphasis on it excluding psychiatric =
patients, "unlike the 1994 CDC criteria".
The linked section also discusses national guidelines, with emphasis on =
NICE.
However, there is this:
A 2003 international CFS study group for the CDC found ambiguities in =
the CDC 1994 CFS research case definition which contribute to =
inconsistent case identification.[12] Different self-reported causes of =
CFS are associated with significant differences in clinical measures and =
outcomes.[13]
4. The linked section on treatment is mainly about the virtues of =
CBT/GET. Here is the introductory paragraph:
Treatment of chronic fatigue syndrome (CFS) is variable and uncertain, =
and the condition is primarily managed rather than cured.[1] Only two =
treatments, cognitive behavioral therapy and graded exercise therapy, =
have demonstrated reproducible evidence for their efficacy. Other =
proposed treatments include medications, medical treatments, and =
complementary and alternative medicine.
Here is more of the same:
A systematic review published in 2004 concluded that depression was the =
only factor associated with unemployment, and that only cognitive =
behavior therapy, rehabilitation, and exercise therapy interventions =
were associated with restoring the ability to work, although for =
questions of disability and employment in CFS, the limitations inherent =
in the current literature are extensive.[4]
5. Regarding CBT, here are some excerpts:
CBT is not necessarily a cure for CFS, but according to The Lancet it =
can result in improvements in about 70% of patients.[3]
To be fair, there is some limited commentary on limitations of this =
approach. This is, however, deeply embedded in three very long =
paragraphs citing excellent results. However, there is this:
A large evaluation study in Belgium, however, lead to the conclusion =
that while on average CBT may cause patients to feel somewhat better, =
objective measurement shows no reduction in their disability.
6. A bright point in all this is the limited section on graded exercise =
therapy. Here is the whole section from linked treatments page::
Graded exercise therapy
Two systematic reviews suggest that some patients may benefit from =
graded exercise therapy (GET), although there are some limitations with =
the evidence and the generalizability of the findings.[25][2] The most =
recent of these reviews (published in 2006) also notes that "no severely =
affected patients were included in the studies of GET".[2] Patient =
organisations' surveys commonly report adverse effects.[8][9][10][26]
A New Zealand study suggests that GET may result in self-reported =
improvement in part by "reducing the degree to which patients focus on =
their symptoms."[27]
However, taking the CBT section into account it reads like spin: yes, =
graded exercise therapy is not great, but CBT changes everything.
7. The section on immunotherapy is mainly about staphylococcal toxoid =
vaccine.
8. On Lyme disease:
Although post-Lyme syndrome and CFS share many features/symptoms, a =
study found that patients of the former experience more cognitive =
impairment and the patients of the latter experience more flu-like =
symptoms.[66]
9. On psychosomatic diagnoses, we have this, which would be good if so =
much praise for CBT didn't exist:
A 2006 review found that there was a lack of literature to establish the =
discriminant validity of undifferentiated somatoform disorder from CFS. =
The author stated that there is a need for proponents of chronic fatigue =
syndrome to distinguish it from undifferentiated somatoform disorder. =
The author also mentioned that the experience of fatigue as exclusively =
physical and not mental is captured by the definition of somatoform =
disorder but not CFS.[67] Hysterical diagnoses are not merely diagnoses =
of exclusion but require criteria to be met on the positive grounds of =
both primary and secondary gain.[68] Primary depression can be excluded =
in the differential diagnosis due to the absence of anhedonia and la =
belle indifference, the variability (lability) of mood, and the presence =
of sensory phenomena and somatic signs such as ataxia, myoclonus and =
most importantly, exercise intolerance with paresis, malaise and general =
deterioration.[citation needed] Feeling depressed is also a commonplace =
reaction to the losses caused by chronic illness[69] which can in some =
cases become a comorbid situational depression.
10. Here is most of what is on ME in the history section:
In 1955 at the Royal Free Hospital in London, United Kingdom, another =
outbreak occurred that also affected mostly the hospital staff. Also =
resembling CFS, it was called both Royal Free disease and benign myalgic =
encephalomyelitis and formed the basis of descriptions by Acheson, =
Ramsay, and others.[76] In 1969 benign myalgic encephalomyelitis was =
first classified into the International Classification of Diseases under =
Diseases of the nervous system.[77]
There is a lot more, with more balance, in the contraversies section. =
The largest discussion, however, is in the linked alternative names =
section under the heading "Benign myalgic encephalymyelitis". Here is =
the opening line:=20
Benign myalgic encephalomyelitis (BME, shortened further to myalgic =
encephalomyelitis or ME) means mild, non-progressive inflammation of the =
brain and spinal cord with muscle pain.=20
However, look at the final paragraph:
Some patient literature refers to autopsies which support the name =
encephalomyelitis. Three cases were reported in a PhD by Wallis, but all =
the individuals died of other disorders and Wallis himself was not able =
to link any abnormality with ME. The only other published report offers =
evidence of infection but not inflammation (e.g. McGarry et al., =
1994)[22]. The case of Sophia Mirza is complicated by confounding =
factors and therefore findings of inflammatory changes in the peripheral =
nervous system may be a result of the additional disorders she described =
during her life. Various patient groups prefer the name myalgic =
encephalopathy as a synonym, as this can be supported by evidence of =
pathology whereas there is no evidence to support the presence of =
inflammatory changes in the peripheral nerves, i.e. 'myelitis'. This =
name was also accepted by researchers outside of the UK.[23] A report =
from 1959 is said to suggest ME could be a distinct condition, but CFS =
and ME are usually used as synonyms.[24]
11. There is a section on contraversies in which more balance does =
appear:
Epidemic cases of benign myalgic encephalomyelitis were called mass =
hysteria by psychiatrists McEvedy and Beard in 1970,[28] provoking =
criticism in letters to the editor of the British Medical Journal by =
attending physicians, researchers, and physicians who fell =
ill.[29][30][31][32][33][34][35][36][37] The psychiatrists were faulted =
for not adequately investigating the patients they described,[38] and =
their conclusions have been refuted.[39][40][41] In 1978 a symposium =
held at the Royal Society of Medicine (RSM) concluded that epidemic =
myalgic encephalomyelitis was a distinct disease entity.[42]
It then goes on to briefly discuss the work of Malcolm Hooper regarding =
ME, but then follows this with a MUCH larger discussion of Elain =
Showalter's book "Hystoriea: Hysterical Epidemics and Modern Culture".
12. The final section in controversies is:
Referring to the UK experience, Ziauddin Sardar questioned how a =
psychiatrist such as Simon Wessely, who "denies the existence of Gulf =
war syndrome . and ME", has "come to occupy a key position in our =
socio-medical order. . who has chosen and vetted him for that post, and =
by what criteria and procedures? Where is the debate over the shaping of =
such research? When will we recognise that health and disease are =
complex entities, where no single expertise is definitive? And when will =
we have the first officially sponsored study of such a problem which the =
sufferers do not have the occasion to call a whitewash?"[44]
The 2006 report by the UK Parliamentary Group on Scientific Research =
into Myalgic Encephalomyelitis (M.E.) noted that "CFS/ME is defined as a =
psychosocial illness by the Department for Work and Pensions (DWP) and =
medical insurance companies. Therefore claimants are not entitled to the =
higher level of benefit payments. We recognise that if CFS/ME remains as =
one illness and/or both remain defined as psychosocial then it would be =
in the financial interest of both the DWP and the medical insurance =
companies." The Group called for investigation of "numerous cases where =
advisors to the DWP have also had consultancy roles in medical insurance =
companies. Particularly the Company UNUMProvident. Given the vested =
interest private medical insurance companies have in ensuring CFS/ME =
remain classified as a psychosocial illness there is blatant conflict of =
interest here."[45]
13. The wikipedia discussion tab has this as part of the header:
" This article is within the scope of WikiProject Medicine. Please visit =
the project page for details or ask questions at the doctors mess"=20
"This article has been rated as B-Class on the project's quality scale.
This article has been rated as High-importance on the project's =
importance scale."
There are links in this text, please visit the site if you are =
interested. We also have this:
This is a controversial topic that may be under dispute. Please discuss =
substantial changes here before making them, making sure to supply full =
citations when adding information, and consider tagging or removing =
uncited/unciteable information.
This article has just enough factual information to make a claim to =
credibility, but with severe spin, especially toward CBT. Please note =
that I am not against CBT for use in CFS, only its unwarranted, =
exclusive and irrational use. I have undergone CBT myself as a tool for =
stress management, and I found it usefull. I am more concerned about the =
apparent agenda to impose it as therapy of choice to the exclusion of =
real biomedical approaches, and the current emphasis on combining it =
with graded exercise therapy. Except for a chance discovery, only an =
understanding of the physical pathophysiology of ME and/or CFS will lead =
to a cure.
Thanks for reading,=20
Alex Young=20
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