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. 👋
'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!
2-minute video of Dave reading his poem plus a separate text piece by him
Dave who became ill with #CFS at 21 17 years ago, describes what it’s like to live with the condition, the impact on his life & sense of self worth, & how he has built a meaningful life, despite the condition.
“Living with chronic fatigue syndrome (CFS) is like being erased. It rubs out what my brain and body can do, turning me into a reduced version of myself.”
“Having CFS is like being a dormant seed, waiting for just enough energy to come alive.”
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“Immunophenotype results suggested the triggering of a stress response in ME/CFS B cells associated with increased usage of additional substrates to maintain necessary ATP levels.”
(UK)
Living with M.E. A Photographic Study by Jeremy Jeffs
Would you be willing to participate and share your ME journey?
Photographer Jeremy Jeffs is looking for more people to take part in a project that aims to give identity and visibility to people who are living with M.E.
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For the past 2 years Jeremy, who has M.E. himself, has been travelling around the country photographing people in their homes, with the aim of showing the many ways in which the disease affects people.
The German Federal Ministry of Education and Research (BMBF) has published a new call '"to promote interdisciplinary collaborations to research the pathomechanisms of #myalgicencephalomyelitis / #chronicfatiguesyndrome (ME/CFS)." The aim is to research the pathomechanisms of post-infectious ME/CFS in more detail.
The newspaper writes that during the last year they have been in contact with more than 200 carers and patients who tell the same story about failure from the Danish health system leading to deterioration for the patients.
It shows they have less than 16,000 DNA samples (they have funding for 25,000). Hopefully the ME community will make a big effort to reach more people in next 8 weeks.
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"Despite Resistance, Policy Makers Push The Paradigm On ME/CFS And Long COVID"
by Prof Brian Hughes ( @b_m_hughes ), Prof Steven Lubet & David Tuller DrPH
"(Contd.) Moreover, when tracking treatment outcomes with objective measures—such as physical endurance tests, actometer data, records of workplace participation, or analyses of dependence on social benefits—the research generally showed minimal or null effects for both GET and CBT.”
“(Contd) Ongoing resistance to the paradigm shift only ensures that patients will continue to be offered inadequate & possibly dangerous therapies. Recent reports from patient support groups suggest that many health care services across England are not yet aligned with the new ME/CFS guideline, still offering treatments that are now disfavored”
Coauthored by the lawyer who prevailed on the disability case of @brianvastag disability case and a clinician who has done many ME/CFS disability cases
“Other viruses, such as Epstein-Barr virus (#EBV), are also thought to trigger ME/CFS, although the mechanisms are equally complex.
Like other human herpes viruses, EBV can hide out in the body, evading the immune system for years until stress or some other illness reactivates the virus.”