"#MEAction recognizes that everything seems to cost a little bit more these days...as it is now costing us a little bit more to provide the programming and resources needed for this community. If you have a few extra dollars to give, we would greatly appreciate it."
"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.
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.
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".
"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 Can you think of another illness still being treated in such an outdated way?
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"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"
"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
"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”
🧵
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?!
