Wow! As a physio I never understood why the fatally flawed PACE trials and others were not judged harshly by Cochrane and other safeguards of science. But another nail in the coffin of GET! This means specialist clinics, such as my local service, offering only diagnosis, GET and CBT now only have CBT to offer in terms of ‘treatment’ without a serious risk of harming patients.
So without a 2 day cardiopulmonary exercise test (CPET), that has serious risks for us, NO ONE can tell you to try exercise. Use the link to explain to everyone why it is contraindicated in our condition.
At last!!!! I always knew excercise was dangerous!
I was placed on Liverpool programme as North West specialist centre. I found it less than helpful and the data they were sharing as to the efficacy of the programme was seriously flawed both in its collection and analysis.
They appear convinced of the efficacy of CBT too, whilst ignoring the real tests, care and treatments they might offer. But the scale of biomedical research is tipping away from the ‘unknown origin’ theory to clear systems at fault. We now have a research centres at both Stanford and Harvard whilst the U.K. biobank has finally achieved funding. Hopefully we can see the swing soon. NICE are considering the guideance for ME for publication in 2020 so anything published now is important.
We are campaigning for another debate this year, preferably in the HoCs, so any letters, emails, phone calls or visits to your MP regarding our lack or care will have impact. Resources are available to use to speed up the process, let me know if the link would be helpful.
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