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MEpedia

@MEencyclopedia

The MEAction encyclopedia, crowd-sourcing the history, policy & science of the disease. Edit and improve an article today! @MEActNet

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me-pedia.org/
Joined May 2012
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Photo by MEpedia (@MEencyclopedia)Photo by MEpedia (@MEencyclopedia)Photo by MEpedia (@MEencyclopedia)Photo by MEpedia (@MEencyclopedia)Photo by MEpedia (@MEencyclopedia)Photo by MEpedia (@MEencyclopedia)Photo by MEpedia (@MEencyclopedia)Photo by MEpedia (@MEencyclopedia)Photo by MEpedia (@MEencyclopedia)
From: @tlkateart #MEcfs #PwME #LongCovid #Spoonie #ChronicallyIll #ChronicPain #chronicillness
"You're not wasting a day by resting You're enabling yourself to feel better tomorrow" Image of a cat with a mug of a hot drink Artist: The Latest Kate

ALT "You're not wasting a day by resting You're enabling yourself to feel better tomorrow" Image of a cat with a mug of a hot drink Artist: The Latest Kate

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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.
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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=5442… #MEcfs #CFS #PwME
Screenshot of video page: National Advisory Neurological Disorders and Stroke Council Air date: Wednesday, May 15, 2024, 10:00:00 AM Time displayed is Eastern Time, Washington DC Local Views: Total views: 395 (385 Live, 10 On-demand) Category: Special Runtime: 04:15:08 Description: This is the Open Session of the 223rd Meeting of NINDS Council. Author: National Institute of Neurological Disorders and Stroke

ALT Screenshot of video page: National Advisory Neurological Disorders and Stroke Council Air date: Wednesday, May 15, 2024, 10:00:00 AM Time displayed is Eastern Time, Washington DC Local Views: Total views: 395 (385 Live, 10 On-demand) Category: Special Runtime: 04:15:08 Description: This is the Open Session of the 223rd Meeting of NINDS Council. Author: National Institute of Neurological Disorders and Stroke

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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/resources/awa… #pwME #MECFS #MECFSAwareness
Image from Open Medicine Foundation (@OpenMedF)
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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
Image from Tom Kindlon (@TomKindlon)
Irish ME/CFS Association (@IrishMECFSAssoc) profile pictureIrish ME/CFS Association@IrishMECFSAssoc8 May 2024
From our free event in Dublin yesterday. In photo is the speaker, Dr Nigel Speight with Association Chairperson, Vera Kindlon, & her daughter, Deirdre Kindlon Murphy, both of whom hosted the event. We have received some positive feedback about the event. #MEcfs #CFS #PwME 1/
Photo of Dr Nigel Speight with Association Chairperson, Vera Kindlon, & her daughter, Deirdre Kindlon Murphy

ALT Photo of Dr Nigel Speight with Association Chairperson, Vera Kindlon, & her daughter, Deirdre Kindlon Murphy

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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/imm… Funded by the Open Medicine Foundation #MEcfs #CFS #PwME 1/
Screenshot of abstract

ALT Screenshot of abstract

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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/imm…
Frontiers | Longitudinal cytokine and multi-modal health data of an extremely severe ME/CFS patient...

Frontiers | Longitudinal cytokine and multi-modal health data of an extremely severe ME/CFS patient...

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) presents significant challenges in patient care due to its intricate multisystem nature, comorbid...

frontiersin.org
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"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
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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
Image from Carole Bruce (@CaroleBruce17)
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. @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
IMAGE DESCRIPTION: An image of a lady in bed with ME/CFS looking at her phone. Wording - I took part in Decode ME from home. Will you? With the URL link to visit decodeme.org.uk

ALT IMAGE DESCRIPTION: An image of a lady in bed with ME/CFS looking at her phone. Wording - I took part in Decode ME from home. Will you? With the URL link to visit decodeme.org.uk

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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.
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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
Image from Janet Dafoe (@JanetDafoe)
Image from Janet Dafoe (@JanetDafoe)
Image from Janet Dafoe (@JanetDafoe)
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I am yet again needing to go to New York for testing and then likely another surgery. We’re not quite sure what’s going on, but it’s Eagles or some kind of vascular problem or something. It is common for those of us who need these surgeries to need several…
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I gave this talk at Cambridge about problematic research in the domain of "medically unexplained symptoms" a couple weeks ago. It's had more than 370 views so far. Thanks @FreyJephcott for inviting me! youtube.com/watch?v=lITfk190…
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- #MEpedia: 3,343 articles have been viewed 30.6 MILLION times! - Social Media Followers: Nearly 70k - Support Groups: over 10,000 members in our top 5 - Chronically Complex Podcast: Over 1,600 downloads since our launch - Severe ME Artist Project page viewed over 1,600 times
Social square with wording: What? How many? 3,000,000+ How many times MEpedia has been viewed! 69,700+ Followers on social media 10,000+ Support group members Our Work in Numbers

ALT Social square with wording: What? How many? 3,000,000+ How many times MEpedia has been viewed! 69,700+ Followers on social media 10,000+ Support group members Our Work in Numbers

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The world seems heavy these days, but it is always important to remember just how powerful the ME community is when we join together. As a community, we are able to make a difference. During #MillionsMissing, #MEAction's @exceedhergrasp1 spoke about power through solidarity.
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Congratulations to #MEAction New York activists for getting #MECFS legislation (A7712B/S6928B) passed in the NYS Assembly & Senate this week! Thanks to @NYSenatorRivera & @DickGottfried for sponsoring as well as the many co-sponsors! Next stop is for @GovKathyHochul to sign!
Congratulations to #MEAction New York activists and allies for getting an ME/CFS piece of legislation (Assembly Bill A7712B/Senate Bill S6928B) passed in the NYS Assembly and Senate this week! This legislation will provide for an ME/CFS education & outreach program in NYS. is written on a red background with NY skyline sketched at the bottom

ALT Congratulations to #MEAction New York activists and allies for getting an ME/CFS piece of legislation (Assembly Bill A7712B/Senate Bill S6928B) passed in the NYS Assembly and Senate this week! This legislation will provide for an ME/CFS education & outreach program in NYS. is written on a red background with NY skyline sketched at the bottom

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I see many posts about finding the biomarkers, the elusive biomarkers for #MyalgicEncephalomyelitis, see @MEencyclopedia me-pedia.org/wiki/Diagnostic… But I am doubtful that there is such perfect biomarker- biomarker studies still rely on clinically diagnosed ME pts
Diagnostic biomarker

Diagnostic biomarker

me-pedia.org
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MEpedia retweeted
Ben H (@benh_mecfs) profile picture
Ben H@benh_mecfs23 Dec 2021
Christmas is an extremely difficult time for many with ME/CFS. A time of year that highlights both the exclusionary aspects of the illness+the extreme, daily suffering that does not take a day off. Hoping for moments of peace to all those suffering. Much love. #MECFS #LongCovid
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Replying to @jenbrea @jenntense
Search for these conditions on @MEencyclopedia and/or search for the ME/CFS+ Brain & Spine FB group. There are also many other excellent groups on FB for these conditions.
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