PwME 4 bioMEdical research

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PwME 4 bioMEdical research

PwME 4 bioMEdical research

@ValeBodi

Surviving #MyalgicE #AAG to tell the story, patient&advocate w/ a JD, into: MEdicine, Social justice & the Arts, Human neutrino/ gnarled Pacer

MEssland Worldwide Katılım Nisan 2014
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PwME 4 bioMEdical research
PwME 4 bioMEdical research@ValeBodi·
#MECFS is such a punishing & invisible illness which has nothing to do with fatigue. It’s a neuro-immuno-MEtabolic systemic dysfunction. It takes so much fortitude, endurance and courage to survive 24/7 on the edge of an abyss. We #PwME are reverse marathoners. #MEAwarenessHour
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Todd Davenport
Todd Davenport@sunsopeningband·
Maybe it initially it could have seemed like a good idea to keep Long Covid and ME separate, but we’re making a mistake by not responding to the research indicating a prevalent subgroup of post Covid ME because ME is a major potential confounder of treatment responses.
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Todd Davenport
Todd Davenport@sunsopeningband·
Nothing has degraded the quality of Long Covid research more than ignoring the existence of ME in study design.
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Adam
Adam@ABrokenBattery·
Covid has led to an increase in #MECFS. In Germany, numbers have gone from ~250,000 to over 600,000 since the start of the pandemic. It’s been around for decades, yet many patients still aren’t believed and are given harmful advice by doctors, as one patient reports.
Adam@ABrokenBattery

Imagine you couldn’t watch television because the sound and colours were too exhausting or needed help just to eat, wash or go to the toilet. This can be a reality for people with a severe form of #LongCovid and #MECFS. Clip from German TV.

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Dysautonomia Intl.
Dysautonomia Intl.@Dysautonomia·
Calling all US dysautonomia advocates! Visit bit.ly/FundDys to easily email your members of Congress and let them know we need more research funding for POTS and other forms of dysautonomia! It only takes a minute of your time to have your voice heard.
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Emerge Australia
Emerge Australia@EmergeAus·
Make a difference for your patients – from invisible to visible. 90% with ME/CFS remain undiagnosed; 50% of long COVID patients meet ME/CFS criteria. Free self-paced RACGP-approved CPD case-based diagnosis & management (HCPs only): zurl.co/WH2qE
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Billy Hanlon
Billy Hanlon@bhanlon15·
BBC: "Our son loved the outdoors – invisible illness means he now can't walk or talk" 'Tomos Sleep, from Swansea, was diagnosed with severe myalgic encephalomyelitis (ME)..in 2023. The cause of ME is unknown and there is no cure' bbc.com/news/articles/…
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Dan Wyke 🦠➡️🧠🔥
Dan Wyke 🦠➡️🧠🔥@Dan_Wyke·
Refreshingly accurate article about severely ill M.E. patients who are routinely neglected or mistreated by the medical profession. #MyalgicEncephalomyelitis
Meleri Williams@meleriwilliams7

I’ve spent the past weeks talking to #ME patients and carers in Wales. There is a spectrum of severity, but there are thousands in dark rooms across the country, unable to walk or talk. Tomos is one of them. Watch/listen/read on BBC Wales news today ⬇️ bbc.co.uk/news/articles/…

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Charlotte Gill
Charlotte Gill@CharlotteCGill·
ME is utterly horrible. I know because I have a moderate version of it (nb. people call it different names - post-viral fatigue, ME). I used to be very fit; I could do tons of press ups, boxed, ran & did gymnastics. Now I have to be careful. The NHS is terrible at diagnosing it. Something I feel quite cross about because you get worse if it's not identified quickly. Also, if you are a very busy person, BE careful. Take relaxation seriously.
BBC News (UK)@BBCNews

Our son loved the outdoors – invisible illness means he now can't walk or talk bbc.in/4sxUCVW

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BBC Wales News
BBC Wales News@BBCWalesNews·
Our son loved being outdoors - now ME means he can't walk or talk bbc.in/4uKBXaN
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Meleri Williams
Meleri Williams@meleriwilliams7·
I’ve spent the past weeks talking to #ME patients and carers in Wales. There is a spectrum of severity, but there are thousands in dark rooms across the country, unable to walk or talk. Tomos is one of them. Watch/listen/read on BBC Wales news today ⬇️ bbc.co.uk/news/articles/…
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ME/CFS Science
ME/CFS Science@mecfsskeptic·
10) Link to the paper: McGrath et al. Incidence age is bimodal for Myalgic Encephalomyelitis / Chronic Fatigue Syndrome, with higher severity burden for early onset disease. academic.oup.com/ooim/advance-a…
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ME/CFS Science
ME/CFS Science@mecfsskeptic·
5) Approximately 20% of patients falls in the early onset onset group. They were more likely to report an infectious trigger (57%) than the late onset group (47%) and more likely to have glandular fever/infectious mononucleosis as a trigger of their ME/CFS.
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ME/CFS Science
ME/CFS Science@mecfsskeptic·
6) A larger percentage of respondents in the early onset group had one or more first degree relatives with ME/CFS (22.5%) compared to the later onset group (14.9%). The early onset group also tended to be more severe (see the graph below) but the difference was not that large.
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ME/CFS Science
ME/CFS Science@mecfsskeptic·
1) Two age peaks: a fascinating paper confirmed two peaks for when people get ME/CFS: around 16 years old and in the mid thirties. The early onset in adolescence was associated with severe ME/CFS, an infectious onset, and having relatives with the disease. A brief summary...
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