BBC: #LongCovid course is 'exploiting people', says ex-GB rower
Former Team GB rower Oonagh Cousins was offered a free course of the contested
alternative treatment "Lightning Process" (LP) for her long Covid. She says: "They were trying to suggest that I could think my way out of the symptoms, basically". The BBC has secret recordings from an LP-course confirming patients are told they can recover by changing thoughts, language and actions.
Professor and LC-researcher Danny Altmann says such behavioural approaches disregards the "mass" of measurable underlying damage in patients. Neuroscientist Dr Camilla Nord says the course is straying very far from neuroscience and calls it an abuse of scientific terms. The story is presented both as an article https://www.bbc.com/news/health-69040592 and a 38 min radio programme titled "Long Covid: Mind Over Matter?" https://www.bbc.co.uk/sounds/play/m001zg5q
"Health-care experts and medical studies have found that racist myths about Black people … coupled with physicians’ biases, mean Black patients are more likely to be seen as drug-seeking and described negatively in electronic medical records."
“Who gets diagnosed with Long Covid, it’s socially and economically skewed”
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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.
(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"
A thread for twelve #MECFS, #LongCovid and related research papers from w/c 20th May 2024.
Links are to our forum discussion threads, where abstracts, links to paper, analysis and discussion can be found. Inclusion does not equal recommendation.
Arvo, Toots. Having a slow one today - all of us feeling the colder weather, and feeling it in our bones. #Wonderdog is booked in to see her vet later in the week, for a refill of her arthritis medicine; partner has retreated for a nap. I am reflecting on a discussion I had last night with an old friend who still thinks that #MECFS can be managed with “routine,” and maaate. I’ve lived with this since 1992, that’s 32 years now. You think there’s anything I haven’t TRIED?!
"Over the past several months, clinicians and medical students across the U.S. have attended presentations, roundtables and conferences to learn about ME/CFS – and how to take the Mayo Clinic Proceedings Continuing Medical Education course on ME/CFS."
Et en bon français : tout conseil pour gérer un #covid quand on a un diagnostic de #mecfs ou #emsfc et minimiser les chances d'un #covidlong est très bienvenu.
Researchers from the Quadram Institute and University of East Anglia are testing the feasibility of red light therapy for people with ME. This pilot study, called Light ME Up, is being supported by the charity Invest in ME Research @invest_in_me_research
@tomkindlon@invest_in_me_research@mecfs Several years back Salford Royal invited me to participate in a pink-light study for those with M.E. &/or F.M. I could not participate due to requirement to speak via telephone. At that point I was not so severely effected that I could have attended the out-patient appointments. I wonder whether researchers are more flexible post-covid, i.e. using video-calling or email or text-messaging?