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