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!
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
(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.
2/
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.
Investigating Antibody Reactivity to the Intestinal Microbiome in Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): A Feasibility Study
“If orthostasis symptoms are present, an autonomic reflex screen (including 10-minute tilt table) may be advised. In the event that this testing is not available, an in-office NASA lean test may be used to identify and to characterize #orthostaticintolerance and possible #posturalorthostatictachycardiasyndrome”
A history of chronic fatigue syndrome was derived from a "Yes" response to the question, "Have you ever been told by a doctor or other healthcare professional that you had Chronic Fatigue Syndrome (CFS/ME) or Myalgia Encephalomyelitis (ME)?"
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.
🧵
"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.”