tomkindlon.bsky.social - Profile | ThreadSky | a Reddit-style client for Bluesky

Highlights from Prof Chris Ponting’s presentation to the joint APPG on ME & Long Covid: He made clear that graded exercise is harmful, and warned that despite rising numbers, there’s still no research strategy, no effective treatments, and almost no funding. #MECFS #LongCovid

submitted 13 days ago • 5 comments

Highlights from today’s BBC Radio Scotland segment on #MECFS: University of Edinburgh found blood differences in people with ME – debunking myths and offering hope for a diagnostic test. Featuring Dr Sjoerd Beentje and #MEAction Scotland’s Karima Rahman

submitted 11 days ago • 1 comment

Clip of Karen Hargrave, who has ME and her husband has very severe ME: “One of the biggest challenges people with #MECFS face is being believed and having their condition taken seriously.” From BBC Radio 4’s Today programme.

submitted 11 days ago • 2 comments

Worth noting the influence of the Science Media Centre on how #MECFS is reported by the BBC. Even when covering biomedical advances, there’s often pushback or framing around mind-body explanations.

submitted 11 days ago • 0 comments

Clip: Karima Rahman from #MEAction Scotland shares her experience of living with ME on BBC Reporting Scotland. She explains the long road to diagnosis, daily challenges, and why a diagnostic test would be a game-changer.

submitted 10 days ago • 0 comments

The very long awaited Final Cross-government Delivery Plan for ME/CFS won’t fix everything, but could be a start. Yesterday I sought confirmation of its publication by the end of June, bringing some government commitment to #pwME. Thanks to @LucyMPowell for a sympathetic response.

submitted 11 days ago • 3 comments

Clip from BBC Health Check – Professor Monica Lakhanpaul explains UK Biobank research showing blood differences in people with #MECFS, including signs of chronic inflammation, insulin resistance, and liver dysfunction. A step towards a possible diagnostic blood test.

submitted 1 day ago • 1 comment

Clip from BBC Look North Kate Warner, who is housebound with #MECFS, fears benefit cuts could push people who shouldn’t work into jobs that makes them more ill. She says people like her are treated as a problem that costs money — and the government just doesn’t care.

submitted 1 day ago • 1 comment

🔬 NEW from @cornellmecfs.bsky.social : Study reveals protein changes in #MECFS using blood-derived extracellular vesicles. First analysis in male patients shows altered EV cargo dynamics post-exercise. 🔓 Read: doi.org/10.1002/ctm2... 📊 Data: mapMECFS.org

submitted 7 days ago • 1 comment

Join a clinical trial assessing the safety and efficacy of sirolimus in adults with Long COVID. For more information, contact [email protected].

submitted 18 hours ago • 0 comments

Join a study testing the dietary supplement Lumbrokinase for its effects on symptom burden in Long COVID, post-treatment Lyme disease, and ME/CFS. For more information, contact [email protected].

submitted 18 hours ago • 0 comments

Participate in a clinical trial assessing the feasibility of an at-home device for cognitive dysfunction related to Long COVID. For more information, email [email protected].

submitted 18 hours ago • 0 comments

Participate in a trial testing the effectiveness of Truvada and Miraviroc in reducing symptoms of Long COVID. For more information, contact [email protected].

submitted 18 hours ago • 0 comments

The ME Association’s Position Statement on the Proposed Welfare Reforms The ME Association strongly opposes the series of reforms set out in the government’s Pathways to Work Green Paper. Read more here: meassociation.org.uk/meap #TakingThePIP #FightTheCuts

submitted 13 days ago • 1 comment

Welfare Reforms: The ME Association strongly opposes government press release! The MEA says: "We urge the government and all parliamentarians to pause and listen to what we have to say before it is too late…….” Read more here: meassociation.org.uk/wrpg

submitted 10 days ago • 0 comments

What Welfare Reforms Are Being Proposed? The government’s social security reforms are expected to remove hundreds of thousands of people from PIP by 2029. The ME Association is concerned that up to 48% of current PIP claimants living with ME/CFS could lose PIP from 1 November 2026. #MECFS

submitted 6 days ago • 1 comment

1/2 Labour MPs Rebel Against Welfare Cuts: Now is the Time to Urge Yours to Act More than 100 Labour MPs are preparing to rebel against the government’s new Welfare Reform Bill — legislation that could cut off support for up to 1 million disabled people. Read more here: meassociation.org.uk/mpaa

submitted 7 days ago • 1 comment

We’re excited to announce PRIME- a new research project starting in October which will create infrastructure for ME research in the UK.

submitted 1 day ago • 1 comment

Our latest News in Brief post has headlines and links to further reading for #MECFS, #LongCovid, and related news, advocacy and research for the week of June 23 - 29. Topics: News, advocacy and articles Coming events Research news and commentary & Published research www.s4me.info/threads/news...

submitted 1 day ago • 0 comments

“How to cope with a heatwave if you have ME/CFS” by @meassociation.org.uk meassociation.org.uk/2022/07/how-... From 2022 but timeless #MEcfs #chronicillness #PwME #CFS

submitted 1 day ago • 1 comment

🧬 New study finds shared metabolic dysfunction in #MECFS & #LongCOVID using systems modeling. 🔬 Predicts candidate treatments incl. NADH, NAC, L-carnitine & MitoQ. 📖 Open-access: www.mdpi.com/1422-0067/26...

submitted 5 days ago • 0 comments

Researchers in China and the US studied 13 ME/CFS and 46 Long COVID patients and found shared muscle metabolism problems, especially low aspartate and asparagine levels. They propose LOLA supplements as a potential treatment. www.mdpi.com/1422-0067/26...

submitted 5 days ago • 2 comments

New Publication: OMF’s computation team identified metabolic pathways that are dysregulated in #MECFS & #LongCOVID. They also identified a combination of L-ornithine and L-aspartate (LOLA) as a potential treatment to explore in future clinical trials. 👉 www.mdpi.com/1422-0067/26...

submitted 5 days ago • 0 comments

1-hour recording from AfME’s Genetics Centre of Excellence webinar: "Presentations from Audrey Ryback, Research Fellow at the University of Edinburgh (funded by Action for ME), and PrecisionLife, our Partners in the LOCOME research project." www.youtube.com/watch?v=zhNt... #MEcfs #CFS #PwME

submitted 2 days ago • 1 comment

David Tuller: “An interview with Sjoerd Beentjes, Lead Author of Big Data Study on "Blood-Based Biomakers" for #MECFS” virology.ws/2025/06/23/t... An 18-minute video interview with lead author of paper "Replicated blood-based biomarkers for #MyalgicEncephalomyelitis not explicable by inactivity"

submitted 2 days ago • 3 comments

1/2 Another Summer Appeal video in 📹 @mediumwhite.bsky.social has long-campaigned for people with ME, calling for an urgent increase in medical research funding. Thank you, Peter, for sharing and supporting our Appeal 🌻 ⬇️

submitted 11 days ago • 1 comment

📹 Recording available! The recording from our last Genetics Centre of Excellence webinar (06 June) is now available to view on our YouTube channel 👇 youtu.be/zhNtqp2gP84 @precisionlife.bsky.social #pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis #longcovid #MEResearch

submitted 4 days ago • 0 comments

Great news, QLD! 🎉 Blood collections for AusME Biobank are now available at multiple locations! 🧪🩸 Donate your blood today if you have ME/CFS, long COVID, or are a healthy supporter. Your contribution will aid vital research. 💪💙 vist.ly/3n75td5

submitted 13 days ago • 0 comments

If you’re living with ME/CFS, long COVID or want to volunteer as a ‘healthy control’ for medical research studies, signing up and becoming an AusME Registry participant is the single easiest way to become involved in research! Sign up today! vist.ly/3n7jru8

submitted 8 days ago • 0 comments

🗞️ LCA in @theguardian.com "A last-minute napkin deal will not assure safety for disabled people. The concessions create an unfair two-tier system – it is unethical to only throw some people under the bus." 🙏 @francesryan.bsky.social for including disabled voices Article👇 tinyurl.com/ms5wwxbn

submitted 3 days ago • 1 comment

Clickable version of link: solvecfs.org/simmaron-res... #MEcfs #CFS

submitted 3 days ago • 0 comments

Ask your reps to cosponsor H.R. 3906 The Medical Research For Our Troops Act to fully restore the $859M cut from CDMRP & fund all 35 programs at FY24 levels. Speak up for #MECFS research & medical innovation! solvecfs.quorum.us/campaign/128... #AdvocacyWeek #SocialMediaActionDay #CDMRP #HR3906

submitted 5 days ago • 0 comments

From personal experience, being sleep reversed is really difficult to endure, one of my more difficult symptoms lately

submitted 3 days ago • 0 comments

Errr, and #LongCovid does the same. It takes momentous effort, years, to try reverse this. It's also, for LC, sleep duration - the balance between short deep sleep and the chaotic, often distressing & exhausting REM sleep. Like being on SSRI meds, but not. WE CAN FEEL BRAIN INFLAMMATION! 2am here.

submitted 4 days ago • 1 comment

This is fascinating as one of the main genes it finds has associations with ME has also got associations with schizophrenia and autism. I and one other person in my family have ME; we’re both autistic and they are also schizophrenic…

submitted 4 days ago • 0 comments

Oh great 🙄😒 Being awake at night is better for my psyche-less noise-less light that sometimes really hurts especially when I have a migraine. Can’t win either way 🤦🏻‍♂️ #MECFS #LongCovid #ChronicIllness #ChronicIllnessesSUCK

submitted 4 days ago • 0 comments

From ME Research UK: Using a dataset of over 2000 individuals with #MECFS, researchers investigated sleep reversal, where individuals are awake at night and sleep during the day. Those with sleep reversal reported greater symptom burden and functional impairment. Read more: bit.ly/sleepreversalme

submitted 4 days ago • 1 comment

From @meresearchuk.bsky.social Prof. Brett Lidbury and colleagues have published the findings of an ME Research UK-funded study in which they found associations between ME/CFS and several genetic variants, including genes involved in brain function and neuroblastoma bit.ly/4l76mLz #mecfs #pwme

submitted 4 days ago • 1 comment

From @meresearchuk.bsky.social In a piece written for 'The Conversation', Dr. Annesley, currently working on research funded by ME Research UK, emphasizes the physical nature of the ME/CFS. Read more: tinyurl.com/yuepfxaj #MECFS #MyalgicEncephalomyelitis

submitted 4 days ago • 0 comments

From @meresearchuk.bsky.social The UK weather has been hot, and those with conditions exacerbated by heat are likely struggling. One such example is orthostatic intolerance, common in ME/CFS, where the body fails to compensate for an upright position. Read more: bit.ly/4kSdpqZ #MEcfs #POTS

submitted 4 days ago • 1 comment

From @meresearchuk.bsky.social Australia's National Health and Medical Research Council - NHMRC has never before issued or approved guidelines for ME/CFS but the process has now begun with dissemination/publication due in March 2028. tinyurl.com/2s443h56

submitted 4 days ago • 0 comments

New US research paper: Immune Signatures in Post-Acute Sequelae of PASC and ME/CFS: Insights from the Fecal Microbiome and Serum Cytokine Profiles www.mdpi.com/2218-273X/15... #LongCovid #PASC

submitted 5 days ago • 1 comment

For @davidjoffe64.bsky.social 's daily feed of brain damage:

submitted 6 days ago • 0 comments

Not wanting to add to the already significant mental health burdens I carry is one reason why I still #MaskUp.

submitted 6 days ago • 0 comments

From Hungary "we report for the first time the activation of P2X7 receptors following SARS-CoV-2 infection is involved in the induction of anxiety & mood alterations through inflammatory pathways" www.sciencedirect.com/science/arti... Image from Science for ME weekly update #NeuroPASC #LongCovid

submitted 6 days ago • 0 comments

🧠‘Our findings suggest that a process of brain repair & remyelination as suggested by higher levels of glutamate & Nacetyl-aspartate & by higher measures of White Matter microstructure may occur after SARSCoV2 infection [&] may help the recovery from Long COVID symptoms such as cognitive impairment’

submitted 6 days ago • 0 comments