Tuesday, January 23, 2007

Inappropriate Medical Treatment for CFS can be Deadly

Excerpts from a very well researched letter by Jodi Bassett and Clytie Siddall.  The entire letter is available for download at http://www.ahummingbirdsguide.com/cbtandgetletter.htm and should be sent to any doctor who advocates exercise or Cognitive Behavioral Therapy for CFS patients to advise him of the dangers, and the adverse results, of these inappropriate therapies.

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The name M.E. was coined in 1956. M.E. was formally classified as an organic
disease of the central nervous system (ie. a neurological disorder) in the
World Health Organisation's International Classification of Diseases in 1969
... the recorded medical history of M.E. as a debilitating organic neurological
disease affecting both children and adults is substantial. It spans over 60
years and has been published in prestigious peer-reviewed journals all over
the world. (M.E. is in no way 'medically unexplained.')

The interventions known as graded exercise therapy (GET) and cognitive
behavioural therapy (CBT) have been repeatedly demonstrated in the
literature to be not only ineffective but specifically harmful for people
with M.E. A number of deaths have even been caused by the administration of
GET in people with M.E.

Myalgic encephalomyelitis is an acutely acquired illness initiated by a
virus infection with multi system involvement which is characterised by post
encephalitic damage to the brain stem (which controls all vital bodily
functions). ... This exercise intolerance is one of the
unique features of M.E. - all M.E. patients worsen with even trivial levels
of activity or exercise (or cognitive exertion or orthostatic stress).
People with M.E. do not improve with exercise. They cannot; exercise
intolerance is a large and essential part of what M.E. is. If a person
improves with exercise they do not have M.E. 

The way the bodies of people with M.E. react to exercise is abnormal in a
number of different ways. Strong evidence exists to show that exercise can
have extremely harmful effects on M.E. patients; permanent damage may be
caused, as well as disease progression: recent research has shown that
postural stress (as well as activity/exercise) exacerbates the
well-documented cardiac insufficiency in this disease. Patient accounts of
leaving exercise programs much more severely ill than when they began them;
wheelchair-bound or bed-bound or needing intensive care or cardiac care
units, are common. The damage caused is often very severe and may be either
long-term or permanent. Thus some patients are still dealing with the severe
physical effects of inappropriate advice to exercise (or formal GET
programs) 5, 10, 15 or more YEARS afterward
. These abnormal responses to
exercise are so pronounced that exercise tests are actually one of the
series of tests which can be used to confirm a suspected M.E. diagnosis.

In addition to the risk of relapse, sudden deaths have also been reported
in a small percentage of M.E. patients following exercise. As M.E. expert of
20 years experience Dr. Elizabeth Dowsett, explains; '20% have progressive
and frequently undiagnosed degeneration of cardiac muscle which has led to
sudden death following exercise.' 

CBT to convince someone with M.E., that he/she does not have a physical disorder is disrespectful, inappropriate and cruel. 

There is in fact no evidence whatsoever which exists to show that Myalgic
Encephalomyelitis can be caused or perpetuated by psychiatric or behavioural
problems; nor that therapies such as CBT or GET are appropriate, safe or
useful in treating M.E. patients. The studies which support these theories
and the use of these therapies have been conducted not on people with M.E.
but instead on patients with an entirely unrelated health problem - the
symptom of fatigue.

While there may or may not be some benefit from these interventions in
patients suffering the symptom of 'fatigue' CBT and GET are at best useless
and at worst extremely harmful for neurological M.E. patients. (An entirely
unrelated patient group.) The scientific evidence is very clear on this
matter. It is unscientific and unethical that any patient with M.E. be
recommended (or forced to participate in) such inappropriate programs.

Sunday, January 21, 2007

Another step toward public education

The Parade magazine that most people get in their Sunday newspaper had a one-page article on CFS today.  (Available online starting Tuesday at http://www.parade.com/articles/editions/2007/edition_01-21-2007/Chronic_Fatigue )

Good news, bad news, although the highlighted box mentions "prolonged exhaustion after activity", the article doesn't mention at all that this is a hallmark symptom and the easiest way to differentiate CFS from depression (or virtually anything else).

Still, a magazine that millions of people read has made it clear that it should be taken seriously and is not "all in your head". 

I'm pleased that the doctor specified "gentle exercise", though he didn't specify what that might be.  Too many doctors don't consider it exercise unless you sweat, and that kind of exercise is what makes CFS patients worse. 

Since the doctor didn't specify, I will: all but the most severe/bedridden patients should be able to do some muscle flexes and stretches -- I do mine in bed.  Since putting my head down to my feet makes me feel faint, this allows me to bring my feet up to my head; same stretch but without the negative side effects.  I do modified push-ups: I've recently lost the ability to roll over in bed by rolling (those muscles have been overused with coughing fits during cold season and have responded with another typical CFS symptom: paralytic muscle weakness), I have to push myself up off the bed and flip myself over, which keeps my upper arms toned.  You need not waste energy on non-productive weight-lifting; you can lift a bottle of milk or water from the fridge to the counter, and a one-pound can of vegetables from the shelf to the stove, in the process of fixing a meal.