Read the latest (US) National Institute of Neurological Disorders and Stroke [NINDS] Director’s Message from Dr. Walter Koroshetz: Advancing Research on ME/CFS.
The authors emphasise orthostatic changes in cerebral blood flow, electrocortical activity, heart rate variability, or oxygen extraction, among other physiological changes, can occur in the presence of a completely normal blood pressure or heart rate response on head-up tilt table testing
"Tin Foil Hat Territory? The Gupta Program, the Lightning Process and the BPS [biopsychosocial] in #LongCovid and ME: How brain retraining therapies intersect with the biopsychosocial model"
UK Advertising Standards have upheld complaints against Gupta and LP founder Parker for making unfounded claims, yet they continue to dupe media and clinicians into supporting their programs.
"This excellent article highlights the similarities of these methods with the unevidenced 'biopsychosocial' approach to ME/CFS which has dominated research and treatments for years and is now infiltrating Long Covid, including in NHS clinics."
"We need to be vigilant and educated to spot this charlatanry. We need therapeutic treatments that actually work and stop gaslighting those with post-acute viral disease."
Responding to a BBC programme, Dr Edzard Ernst highlights data showing many are harmed by the Lighting Process and the lack of evidence for claims made.
He concludes: "Does anyone think that LP or its promoters are remotely serious?"
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The Norwegian Broadcaster NRK has an article about the survey from the European ME Alliance (EMEA) which included 11 000 people from 44 countries. 74% answered they have little to no health care.
One of the authors of the survey and deputy for the Norwegian ME Association Trude Schei calls for more knowledge among GPs and to not push ME patients into treatments with no documented effect.
Despite the results from the survey, paediatrician and ME researcher Maria Pedersen claims CBT has good effect as treatment for ME.
Unsure how common this is in other #ChronicIllness affecting cognition, but when you have #MyalgicEncephalomyelitis the writing errors you’re almost guaranteed to make are:
Double the same word
or
Exclude it altogether
Or do both!
So frustrating & the sicker you are the worse it gets. You simply can’t see mistakes! Other problems too ofc but I’ve found this is the most common error made by #PwME
(UK)
"Government funders of research in ME/CFS, academic researchers and persons or representatives of persons/groups with lived experience of ME/CFS came together to develop a Researcher Toolkit"
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"It [the researcher toolkit] provides an important overview of: UK government research funding opportunities; guides to embedding patient and public involvement; resources on developing high quality proposals and more"