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Hvorfor gradert trening og kognitiv terapi ikke gjør ME-syke friske

Jeg har fått en email videresendt fra nettsiden stonebird.co.uk med en beskrivelse av hvorfor pasienter med alvorlig ME ikke bør bli påtvunget gradert trening og kognitiv terapi. Beskrivelsen er skrevet for at man kan gi den til leger eller annet helsepersonell som tror dette er tilfredstillende behandling:

We know of  very severely ill people being prescribed GET and CBT in order
to make them «well» and get back to work.

In response we have drawn up this  single » page of reasons» , which anyone
with severe ME could give to a professional , to show  how wrong and how
dangerous those  behavioral   assumptions are:

**

I have Severe ME, if you think that “exercise” , or “changing my thoughts”
or that “encouragement” , “goals and targets” are going to make me well,
then you are wrong . Here are a list  of reasons why :

ME is an acquired organic, pathophysiological, multi-systemic illness that
occurs in both sporadic and epidemic forms. Myalgic Encephalomyelitis (ICD
10 G93.3) is classified as a neurological disease in the World Health
Organization’s International Classification of Diseases (ICD). Nowhere is
there any credible evidence that the “behavioural model” of “CFS/ME” works.

Exercise (Graded Exercise Therapy : *GET*) and thought – changing regimes
(Cognitive Behavioural Therapy : *CBT*) have been shown to seriously
deteriorate the condition of most Severe ME patients who have experienced
them. There will always be some sort of post exertional malaise/fatigue for
people with ME, which is entirely different from the “tiredness” advocated
by those who advocate a psychiatric approach to ME and should never be
equated as the same.

*People with ME are no more mentally ill than the rest of the population.
*It is difficult to conceive of a more inappropriate intervention in ME, than
getting someone to exercise or change their thoughts; for there is no
evidence to indicate neurotic personality traits in ME patients.

NICE states that CBT and GET are “not remotely curative “ or are aimed at
the “underlying disease process “

It is a myth to think that people with Severe ME require encouragement to do
more, or plan goals and strategies , engage with people to build their
confidence or make their life better. There are complex physical and
neurological reasons why people with severe ME struggle to live their daily
lives, interact and why they have to live in isolation. It is not something
they are doing wrong that has led to this; they are seriously physically ill
and are not receiving any treatment.

Patients with severe ME do not want CBT and GET. What they want is
biomedical research, significant biomedical testing and new tests and
treatments available on the NHS. What they need is the psychiatric
interpretation and powerful influence out of ME altogether.

* *

Respons fra Co-Cure.org med beskrivelse av hvorfor gradert trening og kognitiv terapi kan være skadelig for ALLE med ME, ikke kun de som er hardest rammet.

Les responsen fra Co-Cure.org HER

3 responses to “Hvorfor gradert trening og kognitiv terapi ikke gjør ME-syke friske

  1. Rutt 22.06.10, kl. 16:01

    Respons fra Co-Cure.org om hvorfor gradert trening og kognitiv terapi er skadelig for alle med ME, ikke kun de som er hardest rammet:

    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.
    >>

    • Rutt 23.06.10, kl. 14:30

      Hei Kvakk!
      Jeg har ikke rukket å lese igjennom dette, men skjønner at det er en «heksejakt» på Belgiske ME-leger.
      Skremmende tilstander, spesielt for oss som har legen vår i Belgia..
      Tusen takk for link!
      Ha en fortsatt fin dag🙂
      Klem

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