YouTuber and behavioural scientist Pete Judo presents the infamous #PACEtrial which he describes as "what is possibly the worst medical trial in modern history. (contd)”
I wouldn’t have the energy for the whole event so plan to come in just before the chat over free tea/coffee/water & biscuits. Do say hello if you see me. 👋
Research suggests that family history of chronic illness may represent a predisposing risk factor for ME/CFS – including history of ME/CFS, cancer, autoimmune conditions, & metabolic disorders.
A recent study (https://bit.ly/3xA7S4B) revealed ME/CFS participants with joint hypermobility, particularly those with EDS, “demonstrate distinct clinical characteristics, including more severe symptomatology and reduced HRQOL.”
7th April was World Health Day 2024, under the slogan ‘My health, my right’. To coincide, the European ME Alliance released the first-ever Pan-European survey which underscores the urgent priority for healthcare systems to recognise ME/CFS (contd)
“(Contd) as a serious physical illness and provide better medical care, financial support, and social services, as well as a fully funded long term strategy of biomedical research into the disease.
“An interesting conversation between #LongCovid YouTuber Harry Boby and patient advocate Peter White discussing the importance of research funding by charities, in particular for ME, #CFS and Long Covid”
'Beth Pardo is among the people who developed ME/CFS after contracting COVID.' 'Pardo went from running ultramarathons to being unable to leave her bed'
A reminder that if you live within 50 miles of NYC and you have a PRE-2020 #MECFS diagnosis, then @VirusesImmunity and I NEED your help! If you have difficulty traveling we will come to you. Please help us to hit our recruitment goals if you can!
"*PEM is post-exertional malaise, also known as post-exertional symptom exacerbation. It is a symptom of ME/CFS and is also found in many people with #longCovid"
In December 2023, ME Research UK attended a 2-day conference organised by the National Institutes of Health (NIH), titled “Advancing ME/CFS Research: Identifying Targets for Intervention and Learning from Long COVID”
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Read more about the conference and the important topics discussed: https://www.meresearch.org.uk/reflections-on-the-nih-conference-part-1-overview
It's the 7-year anniversary of this paper of mine. It could be useful if somebody feels coerced into doing graded activity or exercise programmes; also to counter claims that the #PACEtrial showed graded activity programs are safe.
Reminder to people in Ireland: Dr Speight's 5 free Irish ME/CFS talks in Cork/Dublin/Galway/Limerick/Sligo, May 2024 organised by @IrishMECFSAssociation . Plus he is seeing patients aged 20 or younger for free while he is in Ireland.
Of note: “exertional dyspnea” with a prevalence of approx. 80% in ME/CFS: Shortness of breath during exercise (exertional dyspnea) produces a sensation of not being able to "get enough air" and a feeling of being "out of breath
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From @anilvanderzee
“Besides the reference to the Daniels paper, this seems to be quite helpful. There were some other things but overall not bad at all. Great to see more papers on psychological support and pacing” https://t.ly/0NkaF