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"
"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."
The European ME Coalition (EMEC) call upon candidates in the European elections to commit to supporting individuals suffering ME/CFS by endorsing the ME/CFS pledge.
You can help by contacting the candidates for the European elections in your country and ask them to support the ME/CFS pledge. EMEC has drafted a template letter that you can customize.
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
"Objectives: Explore the itaconate trap and other potential traps in central carbon metabolism. Build pathways of central carbon metabolism. Develop kinetic models to try predict potential “weakness” points. Test the hypothesis experimentally."
Approximately 400 people protested on Saturday 11 may at Federal Square in Bern in Switzerland for better care for ME/CFS patients. Chantal Britt, president of the Long Covid Switzerland association helped to organize the protest. She pleaded to establish centers of expertise and promote research on ME/CFS.
"#MEAction’s narrative activity study with Mayo Clinic opens today! We’re looking for people with ME/CFS or Long COVID with PEM to share their experiences.
The survey will be open from 5/24/2024 to 6/23/2024."
Long survey (estimate says 20-90 minutes?) but you can do it in sections and come back.
A ME/CFS Awareness Day event was organized in Hungary. Several ME/CFS videos were shown and discussed. The event was video-recorded and can be watched on Facebook.
A 'Liegenddemo', a demonstration where people lay flat on the ground, was organized on 11 May in Berlin to raise awareness of ME/CFS. Prof. Scheibenbogen and the German Minister of Health gave a short speech.