Extract from comments by Dr Binita Kane in this popular Guardian article today:
"‘I could bench-press 100kg. Now, I can’t walk’: Lucy’s life with #longCovid ."
"Before the pandemic, Lucy Keighley ran a gym, worked as a personal trainer and went on gruelling, exhilarating runs. But after three and a half years of illness, she isn’t sure she will ever recover"
ME Research UK is delighted to announce that we have awarded funding to Prof. François Jérôme Authier and colleagues for a new study assessing neurocognitive impairment in people with ME/CFS. https://bit.ly/3yNR3Uq
ME Research UK:
Our monthly e-newsletter keeps supporters up-to-date with ME Research UK's activities and research commentary. View May’s e-newsletter online ( https://bit.ly/3VlK91H ) and sign up today - https://rb.gy/0seeyj
Read the latest (US) National Institute of Neurological Disorders and Stroke [NINDS] Director’s Message from Dr. Walter Koroshetz: Advancing Research on ME/CFS.
Applications for access to DecodeME data invited.
"Our ME/CFS data set includes both phenotype and genotype data from thousands of participants, who have consented to us sharing their data on a de-identified basis. (contd)”
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?"
(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"