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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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I don't know if you can entirely get away from CBT. Dr. Klimas recommends it; Dr. Jason's study had CBT elements in it; perhaps you could reframe it as something that can aid any patient with a chronic illness but not as a specific treatment for CFS.
On the other hand I think GET can and should be dismissed entirely. I think its very dangerous program and if the CAA hasn't vigorously come out against it then I think they should.
One problem with issues like cardiac dysfunction and mitochondrial dysfunction is that there really aren't enough solid studies to prove to the scientific community that its present in CFS and I think the CAA wants that before they're going to say its there.
I looked at the CFS Toolkit and it really is disturbingly heavy on CBT. The CAA produced their own physician program over a year ago- I don't know why the Toolkit is still up there but its not a very pretty document. One problem is that CBT has gotten the lions share of treatment studies. There haven't been that many other ones but Dr. Lerner has published studies on Valtrex I think it was -they should certainly be represented because with the right patient that drug works. Most treatments are NOT going to get studies on them. of course, the CAA and other groups will have to rely on anecdotal information from trusted sources.
As on most things, I agree with you here. I was just addressing GET and the British model of CBT. CBT or another psychotherapy specifically to help someone deal with a chronic illness is good. Specifically CBT to help a patient change unhelpful (maladaptive) beliefs such as that they do not have a serious illness or they have a purely psychological illness and that they should just push through it would be helpful to most pw/ME. I would be happy if this appropriate type of CBT were promoted or listed as being theoretically and anecdotally (or what ever type of evidence exists) helpful. But it has to be specified that the unhelpful illness beliefs to be challenged in the patient are those mentioned above and not the spurious "neurotic fear of activity" and other "abnormal illness beliefs", in the parlance of Wessley et al.
In this population study:I don't know if CAA has compared their findiings to the UK - there are some interesting differences, like how 60% of UK sufferers had their onset before the age of 40 vs. the older age of onset in the CAA survey from eyeballing the numbers. I have my suspicions that the average age of onset is younger than the 40-50 quoted by the CDC.
Finally, I don't know whether or how CAA figures have been conveyed to the US federal gov't. I've reviewed a few CFSAC meetings and these type of issues aren't brought out very much. I understand CAA is limited by funding and staff. But like last year, when they held a briefing for congressional reps, the press release was too late for me and others in my support group to contact our reps to attend.
(Sorry for hijacking the thread.)
the mean "age of onset of fatigue" for the CFS group was 36.3 - see Table 4 at: http://archinte.ama-assn.org/cgi/reprint/159/18/2129Jason LA, Richman JA, Rademaker AW, Jordan KM, Plioplys AV, Taylor RR, McCready W, Huang CF, Plioplys S. A community-based study of chronic fatigue syndrome. Arch Intern Med. 1999 Oct 11;159(18):2129-37.
Yes, CBT is a loaded term - it's a mixture of cognitive and behaviour therapy. What sort of conditions can be effectively treated by CBT alone? Generally psychiatric ones.Stress is involved in every single illness and disease. Stress knocks the immune system and plays games with the brain. So yes, prob it hurts those of us with CFIDS but it also hurts those with every other disease. Maybe those with cancer, MS, Parkinson's, depression, broken bones, heart disease, and so on also would benefit from CBT. But hitting the CFIDS people alone with CBT is insulting. And it is meant to be insulting by the CDC. The CDC wants us to look as weak as possible and they have done a rather fine job of instilling this in the heads of the doctors and public.
But what a patient does on a personal level to help themselves is a bit different to what we want, or don't want, advocated or publicised as a treatment for ME/CFS, epecially if it is going to end up as a cornerstone of the treatment a patient receives. Unfortunately because of the lack of physical treatments for ME/CFS doctors will often feel they need to suggest something, so might grasp at anything. In this context, it is easy for CBT to end up as the only, or main, treatment someone gets.