ME/CFS - “Hell is empty and all the devils are here”
Edinburgh
Joined August 2022
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LJD retweeted
Stanford researchers propose that Long COVID and ME/CFS may disrupt the brain’s waste removal systems.
Impaired autophagy and glymphatic clearance could allow toxic proteins to accumulate, contributing to brain fog, fatigue, and neuroinflammation.
mdpi.com/1422-0067/27/20/935…
LJD retweeted
Powerful clip @johnthejack on the BPS model for #MECFS
It meant he was “an unreliable witness” to his own body, he could get better if he just changed his thinking and his behaviour. People viewed him differently and the responsibility to recover was put onto him.
LJD retweeted
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/cpv8…
LJD retweeted
Our son loved being outdoors - now ME means he can't walk or talk bbc.in/4uKBXaN
LJD retweeted
Very sad to hear of the death of David J Black who wrote some very important pieces on #ME. His son is severely affected and now lives in hospital. Black never mentioned that.
David J Black | Scottish Legal News scottishlegal.com/articles/d…
LJD retweeted
people misunderstand the icarus story. the problem was not that he flew too high. it's that the wings were made of beeswax, which offered very little resistance to heating. with modern materials he would have had no problems. we can fly as close to the sun as we want now
LJD retweeted
This is the kind of people that Jesus beat out of the Temple in Jerusalem.
LJD retweeted
Clip: Dr @binitakane explains how ME is an energy-limiting illness.
The hallmark symptom, Post-Exertional Malaise (PEM), means even normal activities can trigger a worsening of symptoms. Some of her patients have to choose between a shower or preparing a meal that day.
LJD retweeted
"imminent threat"
"47 years"
Iran has been an imminent threat to the United States for 47 years.
The president was right to act.
Readers added context they thought people might want to know
Nothing can be “imminent” for 47 years.
merriam-webster.com/dictionary/imm…
LJD retweeted
I have recently had a debate in the Swedish Medical Journal. The neglect of people with #MECFS is flabbergasting. Some of the opponents seem to admit that there really is no evidence for graded exercise therapy—but still want to apply it. lakartidningen.se/opinion/de…
LJD retweeted
I hadn't realized I was also visible on some of the pics at the amazing protest in Berlin.
100 bodybags representing the "living death" of people with (severe) ME and the many people who've died.
Honored to have been part of it! Really well done and thank you Kinder ME/CFS.
LJD retweeted
Men with ME/CFS showed an abnormal or “maladaptive” EV response to exercise.
Instead of helping the body recover, their EVs carried signals of metabolic problems (difficulty producing energy), an overactive immune response, and cellular stress.
LJD retweeted
1) Moving paper by young ME/CFS researcher Katherine Cheston. She was aware of the great disability it causes but "encountering the reality of this suffering first-hand was still shocking and deeply saddening."
She gives examples of patients who do not get appropriate care.
LJD retweeted
ME/CFS might be the deadliest “non-fatal” disease there is. Most of the people with my level of severity I had short exchanges with over the last decade are gone now. There’s so much more wrong with this than I can put into words.
LJD retweeted
1) We’ve just published our second instalment on the DecodeME results, this timing zooming in on the genes associated with ME/CFS.
