Saturday, June 26, 2010

CBT & GET are dangerous for ME/CFS Patients

<[email protected]>

Greg Crowhurst's recent posting of reasons Why It Is Wrong To Prescribe GET
And CBT To Anyone With Severe ME is wholly correct, but misses a crucial
point that shows it is dangerous for less compromised or partly recovered
patients as well.

We have gleaned for quite some years now from the early super work of people
like Suzanne Vernon that exercise challenge elevates the abnormal expression
of already up regulated genes in ME patients. We also have plenty of
evidence that mitochondrial compromise is involved in these patterns of
metabolic dis regulation, and can result in such outcomes as oxidative
stress, which is potentially very damaging. For every extra molecule of
vital ATP energy mitochondria are required to produce with activity demands,
in ME these damaged cell organelles also release one extra unit of super
oxide. These is a direct one to one correlation between both cell products,
and acts just like smoking 5 cigarettes a day that will also produce a given
level of cell damage.

Graded Exercise or Graded Activity Therapy in any patient suffering from ME
whatever the severity will thus increase the demand for ATP energy and hence
increase super oxide leakage longitudinally as well. GET and GAT is
therefore like telling our 5 a day smoker that going to 30 or 40 a day will
not harm them, and then reporting that doing so does not appear to make
patients worse. Such irresponsible and dangerous statements have even been
made by ME supporters in regard to CBT and GET here in Wales, for example,
where we unfortunately still have several such therapy clinics.

A protracted long term GET induced oxidative stress complication is only one
of very many other molecular consequences where systems can similarly be
over driven causing potential damage to DNA, the vascular system, cell
membranes and channels, other cell organelles, and so on almost endlessly,
just as with additional graded nicotine use. And, of course, GET and GAT
clinics do not check up on their clients some years down the line to see how
they are doing health wise, any more than does the tobacco industry.

With CBT, also, patients are not generally encouraged at all to investigate
medical and research findings, or attend national or local ME support group
meetings since such warnings  about oxidative stress, and the like, will
only re enforce the patient's 'faulty' health belief
that they are still
organically ill following some long since passed viral or traumatic
incident, and that has merely left them physically de conditioned (or so the
the story goes).
Because of the latter state, any current additional activity only induces a
fatigue or pain responce accordingly (unfortunately confirming the patient's
misinformed suspicion that they are still medically sick).

So, the CBT aim is to discourage talk about ME symptoms, discourage the use
of quite unnecessary health props such as wheelchairs or walking sticks, and
restore the original level of fitness gradually by incremented exercise and
activity that should eventually return the patient to symptom free
normality, and even work.

With this CBT approach, ME patients will never be given medically helpful
advice showing, for example, that CoQ 10 could block the action of super
oxide in oxidative stress, protecting patients from its effects.

Keeping patients deliberately in the dark medically in this way, and from
informed understanding and choices about what damage GET and GAT itself can
potentially do according to current informed thinking has got to be immoral
and a scandal, and will deserve its place in medical history one day, with
its promoters.

Not, therefore, to diminish any of the important comments of Greg Crowhurst,
in one way the long term effects of both CBT and GET are more deviant,
covert and eventually health compromising to the less severely effected ME
patient attending these UK NHS Clinics because, mercifully, the severely
effected individual simply cannot sustain the damaging upward trend to extra
effort required in graded exercise and activity that the approach demands
over time. But the stronger ME patients might go on damaging themselves,
like chain smokers, for many months, years or indefinitely, looking well
enough - until something gives.

Abnormal gene up regulation responses observed with increased exertion in ME
patients, with knock on consequences for oxidative stress and other serious
long term molecular damage, refutes and medically counter indicates the
psychological behavioural school of Graded Exercise and Graded Activity for
so called de conditioning in ME, along with its immoral attempt to
cognitively obviate the patient's 'misconstrued' health instincts,
experience and deeper medical understanding.

Karl Krysko BA. BSc.


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