Nielk
Senior Member
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If you had experience with GET as a treatment please fill out the poll to reflect your experience. I am trying to collect information regarding GET for my CFSAC comment March 11th.
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@Nielk, are you aware of the existing polls that have been published? At least three have been published in the UK by patient organisations, and there are other international polls. @Tom Kindlon has also published a research paper on the issue of harms associated with GET, in which he collated the results from a number of international polls, and published the average rates of harm.
Let me know if you don't have any of this info, and I'll post it here for you.
@Nielk - what is the difference between the last two options? It is possible that both could apply if people are greatly harmed by GET.
Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
Tom Kindlon
http://www.iacfsme.org/LinkClick.aspx?fileticket=Rd2tIJ0oHqk=&
See Table 2, on page 110, at the end of the document, for a pooled summary of results from nine surveys, and 4338 patients.
Results: Harm after GET = 51% of respondents.
And see Table 1 (page 105) for list of nine individual surveys, and results.
Here are some individual UK patient surveys (one of which is included in Tom's paper):
ME Association patient survey 2008:
http://www.meassociation.org.uk/wp-content/uploads/2010/09/2010-survey-report-lo-res10.pdf
Action for ME patient survey 2008:
http://www.actionforme.org.uk/get-i...ch-treatments-have-other-people-found-helpful
Action for ME patient survey 2010:
http://www.actionforme.org.uk/get-i...t-and-exercise-on-prescription-survey-results
My understanding is that GET for CFS was originally created for a patient group who were alleged to have a 'functional' (i.e. psychological) illness founded on symptom-focusing, maladaptive avoidance of exercise, and deconditioning etc. So, allegedly, there was no biomedical illness to treat, but it was simply maladaptive behaviour/cognition leading to exercise intolerance and deconditioning.A definition of graded exercise (therapy) would also be useful so as we are all singing from the same hymn sheet I think. Depends a great deal of the kind of actual programme you may have been involved in - and not everyone is or has been. 'Graded' seems to mean different things to different patients - and practitioners. And the levels of personalisation and understand of the disease also play a key role in determining usefulness.
A definition of graded exercise (therapy) would also be useful so as we are all singing from the same hymn sheet I think. Depends a great deal of the kind of actual programme you may have been involved in - and not everyone is or has been. 'Graded' seems to mean different things to different patients - and practitioners. And the levels of personalisation and understand of the disease also play a key role in determining usefulness.
I totally agree with this sentiment. GET simply isn't suitable for someone who is in the midst of an acute illness, or in an acute phase of a chronic illness. There is probably a place for monitoring exercise levels in chronic conditions (i.e. pacing and regular activity where possible.) But I suspect that steady and progressive incremental increases in activity isn't suitable for most chronic illnesses.Would they recommend graded exercise for someone in the midst of a flu or for someone suffering from mono? They might suggest it once they have recovered from their illness.