Wednesday, July 11, 2007

ME/CFS/Fatigue, Round Two

One of the original Incline Village patients wrote: We didn't know that doctors would so completely fixate upon "fatigue" that they would become entirely blinded and oblivious to the neurocognitive complaints and neurological inflammation.

Angela Kennedy, founder of One Click Group responded:

Yes, I think this is a key issue. And I think the words fixated on fatigue and oblivious to the neurology APTLY describes many doctors approach to ME/CFS/LYME etc patients. How indeed were patients to know this would happen?

Excerpts from Angela’s personal site

"5. Fatigue as a trivialising term

... `fatigue' (which might mean tiredness, drowsiness, exhaustion, disturbed level of consciousness, weakness, paralysis, or feelings of malaise, depending on how certain illnesses are experienced or linguistically constructed by individuals) is present in MOST organic illnesses, acute and chronic.

Proponents of the psychiatric paradigm, in their literature, tend to associate `fatigue' with a psychological state, ignoring the physiological reasons that may contribute to the bodily symptoms in ME/CFS ... This logistical flaw results in only the most limited investigation being encouraged for ME/CFS patients, and NOT in areas that might yield definitive results, such as certain brain scans (as discussed and referenced in Hyde et al, 1992, Marshall et al, 2001, Carruthers et al, 2003).

Particularly relevant to ME/CFS sufferers also is the problem also identified by Hyde (1992: 11-12): `……taking the fatigue as the flagship symptom of a disease not only bestows the disease with a certain Rip Van Winkle humour, but removes the urgency of the fact that most ME/CFS symptoms are in effect CNS symptoms.'

This incorrect practice of using the terms `chronic fatigue' and `chronic fatigue syndrome' interchangeably and confusingly has a direct relationship to the research design flaws delineated in point 4 of this document, and the actions described in point 1."

* * *

Patients did not know that this would happen, but in writing "Osler’s Web", Hillary Johnson made a FOIA request for government documents, and found the smoking gun government memos in which it was discussed that calling this Encephalomyelitis-type virus "Chronic Fatigue Syndrome" would make it easier to portray patients as lazy/crazy and thus limit access to disability benefits.

And, sure enough, the medical community which shortens "Asperger’s Syndrome" to "Asperger’s" did the same thing with CFS, dropping the word which is of such importance to differentiation and began referring to "chronic fatigue syndrome" as "chronic fatigue", which opened the door to the psychiatric proponents using the two interchangeably and blurring the lines between post-viral CFS and psychiatric problems and just generalized fatigue from overwork/undersleep. Exactly as those who bestowed the new name intended to occur.

CDC did update their website last year to indicate that there’s a physical component to CFS, but, one step forward, two steps back, states that the tests that we know to provide objective proof of the biological illness ME/CFS are unnecessary. Without objective evidence, it’s difficult to win a case for disability benefits, so if your doctor is taking all his guidance from the CDC’s website, the government’s own misinformation from one agency is saving money for another agency, just as planned in 1988 when the name was coined.

And without objective evidence that you have neurological CFS versus psychosomatic fatigue, it allows the psychiatric community to continue lining their pockets both with research dollars that allow them to "prove" that CFS is depression or stress or unwillingness to work, and, in the UK, with NHS funds for ongoing CBT treatment, even though it’s obvious to anyone with half a brain that talk therapy cannot cure a virus. CFS patients who don’t improve simply from talking about their symptoms are branded "uncooperative" and ordered to continue CBT if they want to continue their government benefits; no effort is made to determine if a different therapy (such as anti-viral medication) would be more effective.

Tuesday, July 10, 2007

CFS, ME and Fatigue

There has recently been some discussion in the CFS/ME community about whether CFS and ME are different diseases, and assertion by some patient/activists that there's no fatigue in ME.  In the US, it is essentially impossible to get an ME diagnosis because CDC initially defined CFS with the symptoms of ME.  Over the years, various people with ulterior motives have re-defined CFS to include "chronic fatigue" from any source: overwork, undersleep, psychological causes. 

However, the Gold Standard for CFS must be the symptoms of the Incline Village patients, the epidemic that caused the CFS diagnosis to be created -- symptoms that match ME.

For myself, if I'm getting a decent amount of sleep and *not* trying to do anything, I don't feel fatigued.  These days, I generally wake up feeling like I remember Normal.  But as soon as I try to do some housework or run errands, the fatigue comes back -- pardon me, "post exertional malaise" and "exercise intolerance" to use the correct terms. 

Prominent activist Cort Johnson takes on the dispute:

CFS, ME and Fatigue
  By Cort Johnson (
  The Fatigue in Chronic Fatigue Syndrome: CFS patients have never been
happy about the word 'fatigue' in CFS and they well recognize the dangers of
focusing too much on it; they have dealt with them for almost 20 years in
the US. Fatigue is certainly present in enormous amounts in most CFS
patients but it's the post exertional malaise - the inability to engage in
activity without increased symptoms- that's the core symptom for many CFS
patients. While CFS patients and advocates have come to rue the prominence
fatigue has come to play in the perception of their disease no efforts have
been made to completely dissociate themselves from it.
  The Fatigue in ME: Some ME advocates on the other hand flatly deny fatigue
is present at all in ME. One prominent website flatly states "Myalgic
encephalomyelitis has nothing to do with fatigue" and that "If you are tired
all the time you do not have ME'. This website also claims that fatigue was
not associated with ME until 1988 when 'CFS' came along.
  An Flawed Definition? Indeed, fatigue plays only a negative role in the
latest (2007) ME definition put forth by Dr. Hyde. Besides the elucidation
of a 'disease process' in ME the presence of fatigue in CFS appears to be a
major differentiating factor between the two diseases. CFS  Except for
fatigue the symptoms of ME are startlingly similar to those of CFS. They
include pain, cognitive deficits, sleep problems, muscle pain, loss of
muscle strength after exercise (post-exertional malaise) and vascular
problems (problems standing, abdominal problems).
One could easily be
forgiven for assuming, based on that list, that Dr. Hyde was referring to
CFS not ME.  
  But he's clearly not for not long afterwards he bluntly states 'ME is not
CFS' . Why? Because "fatigue was never a major diagnostic criteria of ME".
Dr. Hyde reports that 'fatigue, loss of stamina, failure to recover quickly most if not all  progressive terminal disease and in a very large
number of chronic non-progressive or slowly progressive diseases'. "Fatigue
and loss of stamina.cannot be seriously measured.and do not assist us with
the  diagnosis of ME or CFS or for that matter any disease process"
  According to the ME definition the ME patient is in pain, has cognitive
problems, often has problems standing but does not suffer from substantial
fatigue or if they do, it is of little consequence to the physician or
researcher. Loss of muscle strength after exercise probably refers to
weakness not fatigue.
Dr Chaudhury and Behan carefully distinguished between
weakness and the fatigue when they described the features of 'central
fatigue' a problem they they believe is a central feature of CFS. If ME
patients are weak rather than fatigued they can be thankful; weakness itself
is not uncomfortable, fatigue on the other has a high misery index.
  A Historical Perspective: Are ME patients weak or fatigued or both? An
examination of the early (and virtually only) studies on ME indicates that
far from being a throw away symptom fatigue is often mentioned by the early
ME researchers.
In 1959 Dr. Acheson, in a large overview of these studies,
summarized what was known about ME.
  Dr Acheson noted, as Dr. Hyde does, that the severe headaches, muscle
pains (and paralysis!?) are often seen early in the disease. In fact fatigue
is not always mentioned although several analogues to it (lassisitude,
lethary) often are.  Dr. Acheson notes, as does Dr. Hyde that the severe
headaches and muscle pain in ME tend to diminish over time. What Dr. Hyde
does not report, however, is that follow up studies invariably mention that
severe fatigue is a debilitating part of the disorder.
  In the Coventry outbreak the authors reported that 'extreme fatigue. made
the rehabilitation period extremely tedious and long'. Dr. Acheson reported
that the 'majority of patients afflicted in the outbreaks.have returned to
work after a period of convalescence prolonged by fatigue, aches and pains,
depression and lack of concentration". Seven to ten months after the
Akureyri outbreak 'nervousness, fatigue and persistent muscle pains were
common.  Six years later those still afflicted complained of 'nervousness
and tiredness' and less commonly muscle pain and loss of memory.
   Five months after the Punta Gorda outbreak the still ill patients most
commonly complained of 'nervous tensions, fatigue and depression.' Two years
afterwards Deischer reported the most common problems were 'tiring easily'
followed by pain and stiffness. In Dr. Ramsey's and Dorsett's 1977 letter to
the British Medical Journal on ME they stated that the most characteristic
presentation is profound fatigue.increasing in severity with exercise.
(Interestingly these five doctors do not mention headache). A letter to the
BMJ on epidemic myalgic encephalomyelitis on June 3rd ,1978 states 'One
characteristic feature of the disease is exhaustion, any effort producing
generalized fatigue".
In Dr. Acheson's summary he states that 'in some
instances a characteristic syndrome of chronic ill health has developed with
cyclical redrudescences of pain, fatigue, weakness and depression."
  In the more modern era the first symptom that Dr. Ryll, a U.S. physician
who has conducted the longest continual study of ME patients on record
(1975-1994), listed was severe exhaustion. He noted that the 'exhaustion
that occurs in this disease is profound and unusual". (Although championed
by ME advocates for many years Dr. Ryll believe ME, CFS, fibromyalgia and
gulf war syndrome are essentially the same disorder). ME advocates often
claim the Incline Village outbreak of 1983-85 to be ME yet Drs. Cheney,
Komaroff, Peterson, Buchwald, etc. required that patients experience
'chronic debilitating fatigue' for at least 3 months in  order to
participate in the study.
  Thus long before some ME advocates sought to distance themselves from the
fatigue in 'CFS' ME physicians and researchers were consistently reporting
that fatigue was a significant problem at least in the chronic stage of the
  This, of  course, is the stage the great proportion of CFS/ME
patients are in.
  An Unusual and Medically Significant Degree of Fatigue in CFS - While
fatigue is difficult to measure it is incorrect that to state that its
presence does not assist physicians in the diagnosis of any disease process.
Even the International (CDC) Definition takes pains to emphasize the unusual
severity of the fatigue seen in CFS calling it 'severe disabling fatigue' and
stating  that "in  our conception of the chronic fatigue syndrome, the
symptom of fatigue refers to severe mental and physical exhaustion, which
differs from somnolence or lack of motivation".
Studies indicate high
disability rates and extremely low quality of life rankings. CFS - as most
ME advocates well know - is not mere fatigue.
  A Significant Clinical Feature - Fatigue occurs in many diseases but few
diseases display the kind (both physical and mental) or the level of fatigue
or exhaustion found in CFS. Far from being a throw away symptom severe and
incapacitating fatigue is unusual enough to draw the attention of increasing
numbers of researchers. Dr. Friedman reported significant increases in the
number of studies focused on fatigue had occurred in the last five years at
the 2007 IACFS Conference. Diseases and disorders such as multiple
sclerosis, cholestatic liver disease, post-cancer disorder and fibromyalgia
are characterized by fatigue severe enough to be the subject of study.
can be initiated by an infectious event and research suggests immune/central
nervous system dysfunction play an important role in each. Interestingly
study findings in all these diseases are generally coherent with those found
in CFS and therefore, since ME findings borrow extensively from CFS research
studies, on ME as well. 
  No one likes the word 'fatigue' - as noted earlier it obscures the
post-exertional problems that are characteristic of CFS/ME and CFS and both
ME and CFS advocates would do well, I believe, to continue to highlight that
difference. To ignore that fatigue is present in ME, however, is to turn
ones back on the fifty years of ME research and much interesting research
today into the cause of severe fatigue. ME advocates attempts to distance
themselves from the crude stamp of fatigue are easily understood but turning
their backs on an important part of their own disease is unwise and using
fatigue as a hammer to divide CFS patients in the US from ME patients
elsewhere is not only incorrect but is surely unproductive at a time when
ME/CFS or if you like ME and CFS face so many obstacles.
  Buchwald, D., Cheney, P., Peterson, D., Henry, B., Wormsley, S., Geiger,
A., Ablashi, etc. 1992. A chronic illness characterized by fatigue,
neurologic and immunologic disorders, and active Human Herpesvirus Type 6
Infection. Annals of Internal Medicine 1116: 103-13.
  Chaudhuri, A. and P. Behan. 2000a. Fatigue and basal ganglia. Journal of
Neurological Sciences 179: 34-42.
  Chaudhuri, A. and P. Behan. 2000b. Neurological dysfunction in Chronic
Fatigue Syndrome. Journal of Chronic Fatigue Syndrome 6, 51-68.
  Chaudhuri, A. and P. Behan. 2004b. Fatigue in neurological disorders.
Lancet 363: 978-988.
  Epidemic myalgic encephalomyelitis. 1978.  British Medical Journal 3, June
1978, 1436.
  Ramsey, A., Dowsett, E., Dadswell, J., Lyle, W., Parish, J. 1977.
Icelandic disease (benign myalgic encephalomyelitis or Royal Free disease.
British Medical Journal 298, 1350.
  Ryll, E. 1994. Infectious venulitis, chronic fatigue syndrome and myalgic