Read the latest (US) National Institute of Neurological Disorders and Stroke [NINDS] Director’s Message from Dr. Walter Koroshetz: Advancing Research on ME/CFS.
Vienna's city center is currently plastered with #MECFS awareness campaign billboards by the WE&ME Foundation. They are located in some of the most frequently passed pedestrian areas and read: "ME/CFS holds you prisoner".
A thread for sixteen #MECFS, #LongCovid and related research papers from w/c 27th 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.
"I have sat through countless GP appointments where I have had to explain the basics of Post Exertional Malaise [PEM], the cardinal symptom of ME, before going on to discuss treatment."
I've had similar doctor visits.
It's frightening that so many doctors know so little about ME/CFS.
"In our unmatched comparison, we observed that, following #COVID19, POTS and ME/CFS yielded higher rates than after negative testing. In absolute terms, we observed #POTS & #MECFS diagnoses to have a similar disease burden as DM [diabetes]"
“The absence of epistemological humility leaves an unacknowledged gap between patients’ lived experiences and the (lack of) medical knowledge about their illnesses.
This gap leaves the provider vulnerable to bias. Racialized, gendered, classed notions about whose bodies are “really” sick may begin to prevail."
So my pain level has hit 9, and I stayed there for the past two hours. and my sweet child is pissed and complaining that I am "acting like a whining little bitch"...
Last Boosted Toot (re the Emerge Recommendations for #MECFS in Australia) - I have posted before on why I haven’t engaged with MECFS specialists in a long time. This report calls for parliament to implement these recommendations, which include updating Australia’s treatment plans to world standards instead of the current 2002 version of treatments, abandoned everywhere. Yep - 2002. Can you think of another illness still being treated in such an outdated way?
2/
"The investigators hypothesize access to personalized information from a wearable device will enable participants to reduce post-exertional malaise. The investigators will include up to 25% individuals whose #postexertionalmalaise is caused by a condition other than #LongCOVID"
(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"
2/
"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"
"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"
"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."
A short write-up about BBC's critical radio documentary/article about the unfounded claims that Long Covid can be treated by Lightning Process. Tuller calls it a well-done project and gives kudos to the journalist Shraer and the producer.
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
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?"
New website https://tapanuiflu.blog/ documenting & discussing New Zealand's historical #MECFS epidemic outbreak commencing in 1984. Initially noted in the South Otago town of Tapanui but affecting many thousands nationwide. Includes reconstructed media articles from the time
