MEpedia

@PJPrydderch Sorry, it’s a short entry.

@PJPrydderch MEpedia has a long entry about it. me-pedia.org/wiki/Myoclonus….

From: @tlkateart #MEcfs #PwME #LongCovid #Spoonie #ChronicallyIll #ChronicPain #chronicillness

We’re going to invest in ME which is just south of Cambridge and I’m wondering if anybody over there would like to hang out with us and figure out something interesting to do for a couple days afterwards starting July 1.

Recording when ME/CFS Research Roadmap was discussed during the National Advisory Neurological Disorders and Stroke (NANDS) Council meeting on Wed, May 15. 2:22:06-3:27:20 videocast.nih.gov/watch=54421 #MEcfs #CFS #PwME

The Centers for Disease Control and Prevention @CDCgov has officially launched their webpage in recognition of ME/CFS International Awareness Day. Explore it here 👉 cdc.gov/me-cfs/resourc… #pwME #MECFS #MECFSAwareness

I went to the Irish ME/CFS Association Dr Speight event in Dublin but I wouldn't be able for all of it so just came in for the tea/coffee/water and biscuits chat part, as the talk was recorded. Here I am with Dr Speight at the end of the night. #MEcfs #CFS #PwME

Full text published today: Longitudinal cytokine and multi-modal health data of an extremely severe ME/CFS patient with HSD reveals insights into immunopathology, and disease severity Free: frontiersin.org/journals/immun… Funded by the Open Medicine Foundation #MEcfs #CFS #PwME 1/

Frontiers | Longitudinal cytokine and multi-modal health data of an extremely severe ME/CFS patient with HSD reveals insights into immunopathology, and disease severity frontiersin.org/journals/immun…

@julierehmeyer Our deepest condolences

I am shattered. I have no words.

@exceedhergrasp1 Wishing you safe travels. Can’t wait to hear all about it.

"The disabling weakness and exhaustion a person with ME/CFS experiences is so profound that "fatigue" is ...probably an insult." -Jane Cuozzo #severeME #verysevereME #exhaustion #fatigue #weakness #sosick #stillsick #MECFS #fibromyalgia #chronicillness #postviral #disabled

For more of these billboards go to the GoFundMe page of @AaronCa11 Forget awareness weeks, forget articles illustrated by models with hands stuck to their heads. This is REAL advocacy. #ME #LongCovid

. @DecodeMEstudy - A reminder to please take part in the world’s largest ME/CFS study. "I've taken part from home and I am pleased to say I had my confirmation email this morning that they have been successful in extracting my DNA" - Emma If you are aged 16 or over, live in the UK, and have had an ME/CFS diagnosis from a healthcare professional, please take part (if you haven't already): decodeme.org.uk/portal/ #pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis #DecodeME #DecodeMEStudy #DNAresearch #Research

Thank you @CoyneoftheRealm

I just talked to an epidemiologist working on pandemic preparedness, particularly modeling how humans respond. I pointed out that Long Covid should be included and laid out why. She grasped the significance of what I was saying but knew almost none of what I said beforehand.

Here we are in England for the Invest in ME conference (Fri) and science meeting (Wed &Thurs). Rob Phair, Wenzhong Xiao, Ron Davis, David Systrom and me. #IIMEC15

@MEnaced_2016 This is a list of researchers. MEpedia has 200 pages on different researchers, including those researchers it would be best to ignore. me-pedia.org/wiki/Category:…

Happy New Year everyone. Here’s to 2023 being the year of research breakthroughs and the beginning of the end of ME.