Oops forgot the #podcast episode link open.spotify.com/episode/51xh...
boy my brain is in great shape today lol
#myalgicE #disability #longcovid #brainfog #podcast #EasterMagic #Easter
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Hashtag
#myalgice
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New #podcast episode; #Easter Musings
Recent good things I'm #grateful for but Also still present obstacles
Also housekeeping gfm friend set up to help get bad air sorted gofund.me/73aeb36e5
& News campaign docs.google.com/document/d/1...
#myalgicE #disability #spring #longcovid
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A new paper was published in the Annals of Internal Medicine on March 31st 2026, titled ‘The Effect of Fluvoxamine and Metformin for Fatigue in Patients With Long COVID: An Adaptive Randomized Trial.'
Read in full: https://meassociation.org.uk/uw6d
#MECFS #pwME #MyalgicE #LongCovid #PostCovid
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IMAGE DESCRIPTION: Photo of Dr Charles Shepherd, MEA Hon. Medical Adviser. Wording - "Could there be a link between ME/CFS and Low Blood Sugar, and what other conditions should your doctor consider checking for? Please click the link to read the answer in the Medical Matters Database.
Medical Matters – Low Blood Sugar/Hypoglycaemia
Q: Could there be a link between ME/CFS and Low Blood Sugar, and what other conditions should your doctor consider checking for?
A: https://tinyurl.com/nhzdn596
#pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis #LowBloodSugar #Hypoglycaemia
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Bateman Horne Center NIH/NIAID Highlight Post-Infectious Illness This blog post discusses the new strategic vision from NIH/NIAID. "The new NIAID vision identifies post-infectious inflammatory syndromes as an area of scientific interest. In addition to ME/CFS and long COVID, the authors suggest that research may explore how infections could influence the development of other chronic diseases ..."
"NIH/NIAID Highlight Post-Infectious Illness": Bateman Horne Center @batemanhornecenter.bsky.social blog post
batemanhornecenter.org/nih_niaid_hi...
Screenshot from latest Science for ME weekly update
#MEcfs #LongCovid #PwME #ME #MyalgicE
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That puts the annual bill at around £4 billion. That's a ratio of roughly 3,000 to 1: for every £3,000 spent managing the consequences of ME, about £1 goes towards understanding or treating it. The government itself has acknowledged that ME is an underfunded research area. And with ME rates rising since Covid, that benefits bill is only going up. Decades of the illness being wrongly characterised as psychological — something now emphatically rejected by the 2021 NICE guidelines for ME/CFS — catastrophically held back biomedical research and left patients fighting for basic recognition. But the science is finally moving, and there are finally good reasons for hope. SequenceME will sequence the entire genome of 18,000 people with ME and Long Covid — potentially the world's largest 'long-read' whole-genome study of any disease. Building on the landmark DecodeME study (which identified eight genetic signals confirming ME involves the immune and nervous systems), it could identify the biological mechanisms driving ME and point directly towards treatments. Phase 1 is funded and a pilot has successfully proven the method works. The next phase — sequencing 10,000 participants — needs £7 million, and the full study will cost £20 million. Donations to this Just Giving crowdfunder will go towards SequenceME, through Action for ME, a UK charity (Gift Aid eligible). In Norway, ResetME is a placebo-controlled trial of a drug called daratumumab that showed remarkable results in a pilot study — 6 out of 10 patients markedly improved. It's being funded almost entirely by patients and their families, because public funders won't step up and the drug manufacturer won't offer a discount. You can contribute to ResetME here - https://www.me-foreningen.no/om-oss/stott-me-foreningen/me-fondet/english-me-fund/ The single most effective thing you can do right now is to help fund high-quality biomedical research, and encourage others to do the same
A UK man with ME is fundraising for SequenceME, a deeper look at the DecodeME samples (whole-genome sequencing study).
www.justgiving.com/page/gregsan...
Screenshot is extract from his story where he argues there has been a lack of investment in research
#MEcfs #PwME #ME #MyalgicE
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screenshot of abstract
UK research funded by ME Association
Testing a Personalised Dysautonomia Management Protocol in Patients with Orthostatic Intolerance and a Diagnosis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome or Long COVID
Free:
www.mdpi.com/2077-0383/15...
#MEcfs #LongCovid #PwME #ME #MyalgicE #POTS
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#NESVOID,
#mecfs, #cfs, #MEScience, #ME/CFS, #pwME, #MEeps, #MEAwareness, #PostExertionalMalaise, #MyalgicE, #SevereME,
#MillionsMissin
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New podcast episode: under pressure
open.spotify.com/episode/0Lka...
#myalgicE #disability #longcovid #humanrights #Canada
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Photos of the three named researchers
ME Research UK is delighted to have awarded funding to Dr Andrea Polli and Prof. Lode Godderis. Together with PhD student Yanthe Buntinx, the team will explore whether the immune system in people with ME/CFS is exhausted by prolonged activation. bit.ly/polli071
#MEcfs #CFS #PwME
#MyalgicE
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Super grateful that @thesicktimes.org republished my Canary op-ed
l.gourl.es/l/56898fa8cc... and the include the CTV campaign. I've been really struggling so this is a lovely bright light
#myalgicE #disability #sicktimes #Canada #longcovid
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Dr Charles Shepherd Interviewed on BBC Radio 4 – listen in!
Dr Charles Shepherd, MEA Hon. Medial Adviser, was interviewed on BBC Radio 4 yesterday (19th March 2026) following on from their ME/CFS feature on BBC Inside Health.
Listen in: https://meassociation.org.uk/28cf
#MECFS #pwME #MyalgicE
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Montage of three photographs on a red background. Each of the photographs shows a female M E Action Scotland volunteer and a prospective parliamentary candidate for the SNP. Two of the candidates are female and one is male. All the people in the picture are white, facing the camera and smiling.
In an election year, speaking to prospective parliamentary candidates is more important than ever. Last weekend, our volunteers spoke to three PPCs @snp.org Spring conference - @thewliss.bsky.social Kate Campbell and Steven Bonnar
#MyalgicEncephalomyelitis #HealthEquality #MyalgicE
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o graded activity therapies cause harm in chronic fatigue syndrome? Tom Kindlon tomkindlon@hotmail.comView all authors and affiliations Volume 22, Issue 9 https://doi.org/10.1177/1359105317697323 Contents PDF/EPUB Cite Share options Information, rights and permissions Metrics and citations Abstract Reporting of harms was much better in the PACE (Pacing, graded Activity, and Cognitive behavioural therapy: a randomised Evaluation) trial than earlier chronic fatigue syndrome trials of graded exercise therapy and cognitive behavioural therapy. However, some issues remain. The trial’s poor results on objective measures of fitness suggest a lack of adherence to the activity component of these therapies. Therefore, the safety findings may not apply in other clinical contexts. Outside of clinical trials, many patients report deterioration with cognitive behavioural therapy and particularly graded exercise therapy. Also, exercise physiology studies reveal abnormalities in chronic fatigue syndrome patients’ responses to exertion. Given these considerations, one cannot conclude that these interventions are safe and risk-free.
It's 9-year anniversary of this paper of mine. It could be useful if somebody feels coerced into doing graded activity or exercise programmes; also to counter claims that the #PACEtrial showed graded activity programs are safe.
journals.sagepub.com/doi/full/10....
#MEcfs #CFS #MyalgicE #CBT
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New podcast episode: light in darkness
open.spotify.com/show/0oNLwzI...
#myalgicE #disability #canpoli #longcovid #kindness
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Two photographs of a female M E Action volunteer with two SNP MSPs. The captions beside the photos read Thank you Ben MacPherson, MSP for all your past support and welcome Paul McLennan, MSP our new SNP Champion
#MEAction Scotland thank @BenMacpherson for his tireless support since our launch in 2018. Due to his recent appointment as a Minister, Ben is stepping down as our official parliamentary champion. We look forward to working with our new SNP champion, @PaulMcLennan7
#MyalgicE
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New podcast episode: Leadership And Power Musings
open.spotify.com/show/0oNLwzI...
#myalgicE #disability #canpoli #longcovid #power
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IMAGE DESCRIPTION: Photo of Dr Charles Shepherd. Wording - 'Why are some local ME/CFS services unable to provide a diagnosis of ME/CFS? Please click the link to read the answer in the Medical Matters database.
Medical Matters – ME/CFS Diagnosis
Dr Charles Shepherd and the ME Association's other advisers answer questions from members of the MEA.
Q: Why are some local ME/CFS services unable to provide a diagnosis of ME/CFS?
A: https://tinyurl.com/2fdkpua6
#pwME #MECFS #MyalgicE
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New podcast episode pt 6: Ides of March squish squash
open.spotify.com/episode/79gV...
#myalgicE #disability #canpoli #longcovid #idesofMarch
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Ja, da er fru Landmark igang igjen.
#ME #pwME #millionsmissing #actionforME #MyalgicE
www.forskersonen.no/kronikk-me-m...
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New podcast episode pt 5: pi Day squish squash
open.spotify.com/episode/3Wuw...
#piday #myalgicE #longcovid #disability #myalgicencephalomyelitis
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From the Irish ME/CFS Association: We were delighted to get another grant for core funding of €3000 last week from the Hospital Saturday Fund following an application Tom Kindlon made earlier in the year. The Hospital Saturday Fund gets its funds from Hospital Saturday Fund health plans. Medical charities can only get funds once a year so we will of course need to be careful how we plan to use it. In photo: Vera & Tom Kindlon, committee members of the Irish ME/CFS Association, an all-volunteer organisation. Photo was actually from 2020: they transferred the money this year so we don't have one of those envelopes with their name on it. The Hospital Saturday Fund #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME Tom Kindlon-pwme
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Longer message regarding the €3000 core funding grant that we were delighted to receive this week from the Hospital Saturday Fund
#MEcfs #CFS #MyalgicE #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #PwME #MyE
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Photo of Vera and Tom Kindlon
Delighted to receive a €3000 core funding grant from the Hospital Saturday Fund this week.
Will be very useful as there has been relatively little fundraising for us in recent times
In photo: Vera Kindlon & @tomkindlon.bsky.social
Longer message in next post
#MEcfs #CFS #MyalgicE #PwME
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Photo montage of various members of the Scottish Parliament and M E Action Scotland volunteers at the Scottish National Party Spring conference.
During a busy day @theSNP Spring conference, #MEAction Scotland engaged with many MSPs, including Cabinet Secretary for Health and Social Care, Neil Gray, Minister for Public Health and Women's Health, @jennimintomsp.bsky.social and First Minister, @johnswinney.bsky.social
#MyalgicE #HealthEquality
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Photo montage of various members of the Scottish Parliament and M E Action Scotland volunteers at the Scottish National Party Spring conference.
During a busy day @theSNP Spring conference, #MEAction Scotland engaged with many MSPs, including Cabinet Secretary for Health and Social Care, Neil Gray, Minister for Public Health and Women's Health, @jennimintomsp.bsky.social and First Minister, @johnswinney.bsky.social
#MyalgicE #HealthEquality
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New podcast episode- pt4: Friday the 13th squish squashed, The hits keep coming
open.spotify.com/show/0oNLwzI...
#myalgicE #disability #canpoli #longcovid #friday13th #Fridaythe13 I choose to believe it's lucky. Usually..., today the universe seems to be attempting to make me its chew toy
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I was told that if 12 people write to a news source to ask for the same story that it will happen🤞
Template docs.google.com/document/d/1...
Full info in gfm update gofund.me/6d981312
#myalgicE #disability #canpoli #longcovid #friday13th #Fridaythe13 I choose/believe it's lucky
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Another @meassociation.org.uk story I wrote earlier this week. D'you know, I could get used to this! | MEAssociation website | 11 March 2026:
meassociation.org.uk/2026/03/more...
#LLHM #LondonLandmarksHalfMarathon #StocktononTees #ElizabethShearer #publishedpoet #adulteducation #mecfs #MyalgicE
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New podcast ep- pt3: squish squash brick wall
open.spotify.com/show/0oNLwzI... (Note, Silly app isn't generating the link correctly. Takes you to the podcast but not the specific episode. Just scroll to pt3. Le sigh)
#myalgicE #disability #canpoli #chronicpain #meaction
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