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skellou.bsky.social

@skellou.bsky.social
26 followers 92 following 4 posts
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skellou.bsky.social @skellou.bsky.social · 2h
Andy (PPI DecodeME etc) set up fundraiser. Please read his story and donate if possible. #MEcfs www.justgiving.com/page/andrew-...
justgiving.com
Andrew's fundraiser for Action for M.E.
Help Andrew Devereux-Cooke raise money to support Action for M.E.
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Tom Kindlon @tomkindlon.bsky.social · 07/10/2026
Recording of the 24 September 2026 ME Support webinar featuring Chris Ponting @cgatist.bsky.social is up: www.youtube.com/watch?v=UJYU... #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME


THE UNIVERSITY of EDINBURGH 
upport - uest Speaker nt with Chris Ponting 
ME: ME/CFS & biomarker udies ME Support 
Navigating ME/CFS and Long COV.
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ME/CFS Science @mecfsscience.org · 06/10/2026
1) "... the medical aspects of the illness are on the whole better understood by sick people than by their doctors..." In this new paper, philosopher Chloé De Canson details how the ME/CFS community shares and produces scientific knowledge.
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Kim @trinity888.bsky.social · 05/10/2026
This is a brilliant (but long) article about how knowledge on #me/cfs is produced and the role of #pwmecfs in research and dissemination. I learnt so much about the history, what doctors learn (hint: nothing or worse), and the role of patient research and advocacy.
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Adam @abrokenbattery.bsky.social · 04/10/2026
My #MECFS Scandal explainer has just hit half a million views on YouTube. I remember worrying that 27 minutes was too long and nobody would watch it. I never expected it to get so many. Thank you to everyone who shared it! Here’s the trailer 👇
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Tessa Munt MP 🔶 @tessamunt.bsky.social · 02/10/2026
Thanks @thereforme.bsky.social! There must be serious review of the government’s inadequate response to #ME, with its cost to us all. Still considering best options to call for including @georgemonbiot.bsky.social proposed public inquiry, Select Committee Inquiry, a Czar or even referral to HSSIB.
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Adam @abrokenbattery.bsky.social · 01/10/2026
“I was just horrified… The most heartbreaking stories… Treatment is absolutely appalling for patients.” @georgemonbiot.bsky.social speaking to @davetuller1.bsky.social about the hundreds of messages he received from people around the world with #MECFS about their experiences of treatment.
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Adam @abrokenbattery.bsky.social · 29/09/2026
“They’re the victims of this, but then they’re victimised for the sin of having this illness.” George Monbiot on why government and society as a whole need to stop gaslighting people with #MECFS and making them feel they’ve done something wrong.
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Institute of Genetics and Cancer @uoe-igc.bsky.social · 28/09/2026
Exciting to see the official launch of the Genetic Epidemiology of ME/CFS (GEM) International Consortium at this two-day symposium. At IGC, important research into ME/CFS is being conducted by @cgatist.bsky.social, @aryback.bsky.social and Joshua Dibble who are all involved in this meeting.
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Chris Ponting @cgatist.bsky.social · 29/09/2026
Rob Wust (Amsterdam) shows that #pwME and #pwLC (all with PEM) *perfectly* separate from healthy controls with respect to their muscle microvasculature radius. Lower lumen radius in ME/LC. Needs replication, but this muscle biopsy metric has high diagnostic potential. #MEcfs #PRIME26 #LongCovid
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Chris Ponting @cgatist.bsky.social · 28/09/2026
The 2026 PRIME symposium kicks off with reflections from Kelly McLellan on the importance of Patient and Public Involvement in ME/CFS research. #Prime26 #pwME #mecfs
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Adam @abrokenbattery.bsky.social · 27/09/2026
“It has sent many people from having mild or moderate cases to severe #MECFS… it has turned people housebound, bedbound. It has completely destroyed their lives.” @georgemonbiot.bsky.social on the harm caused by graded exercise therapy (GET) for #MECFS.
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Adam @abrokenbattery.bsky.social · 26/09/2026
Symptoms are “horrible” and severe cases are a “living nightmare.” @georgemonbiot.bsky.social speaks to @natashadevon.bsky.social on LBC about ME/CFS, its long history of being dismissed and psychologised, and the role of governments and insurers.
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Natasha Devon @natashadevon.bsky.social · 24/09/2026
George will be coming on my show this weekend to discuss this very important article.
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Tessa Munt MP 🔶 @tessamunt.bsky.social · 24/09/2026
Thank you so much, George! Your conclusion speaks volumes, reflecting so much that I hear from #pwME.
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George Monbiot @georgemonbiot.bsky.social · 24/09/2026
Here's today's column on the astonishing, ongoing mistreatment of people with #ME/CFS. Please spread it far and wide: the only thing which can break the media's wall of indifference is seeing an article about the issue go viral. Thank you. 1/2 www.theguardian.com/commentisfre...
theguardian.com
Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed | George Monbiot
Changes in guidance and science seem to have little impact on millions of devastated lives. It’s a social crisis playing out behind closed doors, says Guardian columnist George Monbiot
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Tom Kindlon @tomkindlon.bsky.social · 23/09/2026
Ror Preston: Whilst we know the average quality of life for ME/CFS patients is amongst the very worst for chronic diseases, I think in advocacy the true disaster that is severe / very severe ME has been significantly underplayed. New @wecrunchme visual on this topic 💙 #SevereME #MEcfs #PwME 1/

Health-related quality of life declines
sharply at higher levels of ME/CFS disability
Health-related quality of life (EQ-5D-5L) for general population vs. ME/CFS by disability severity
Mean health-related quality of life (EQ-5D-5L)
1.00
0.80
0.60
0.40
0.20
0.89
ME/CFS disability severity →
0.69
95% confidence interval
O represents a health state valued as equivalent to death, with below- O representing health states considered worse than death
0.44
0.02
0.00
General Population Benchmark
Mild (n=40)
Moderate
(n=137)
Data source: Orji et al. (2024) ‘Assessing health state utilities for people with ME/CFS in Australia using the EQ-5D-5L, AQOL-8D and EQ-5D-5L-psychosocial instrument'
Severe
Notes: Disability severity levels were derived from the DePaul Symptom Questionnaire - Short Form (DSQ-SF). The study did not define a separate 'very severe' category; participants above the highest severity threshold were classified as 'severe'.
(n=19)
M
CrunchME
CC BY 4.0
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Tom Kindlon @tomkindlon.bsky.social · 23/09/2026
On in 13 hours 43 minutes 5 pm Sydney today 7 pm NZ today 12 am midnight California tonight 8 am UK tomorrow morning 9 am Germany tomorrow morning #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @cgatist.bsky.social
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Action for ME @actionforme.bsky.social · 23/09/2026
We’ve provided a submission to the government for their Autumn Budget. We’re urging the HM Treasury to: 1) Fund implementation of a national framework for severe & very severe ME 2) Accelerate ME research & innovation Read more 👇 www.actionforme.org.uk/action-for-m...
Graphic from Action for ME about their submission to the UK governments Autumn Budget 2026. Photo is of the Houses of Parliament with text beneath. Action for ME logo in top left.
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ThereForME @thereforme.bsky.social · 23/09/2026
We're excited to share something we've been working on for a while. ThereForME is now a registered charity! 🥳 1/4
We’ve got news!

ThereForME is now a registered charity. 

ThereForME is a Charitable Incorporated Organisation
registered in England and Wales. Registered Charity No. 1218590.
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Tom Kindlon @tomkindlon.bsky.social · 20/09/2026
#MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome @cgatist.bsky.social

SPECIAL GUEST SPEAKER EVENT
Professor Chris Ponting
Lead scientist of the DecodeME project, sharing what ME/CFS genetics is revealing and where research is heading next.
THE UNIVERSITY
of EDINBURGH
PROUDLY ORGANISED BY
ME Support
Navigating ME/CFS and Long COVID
Decoding ME: ME/CFS Genetics & Biomarker Studies
•Could ME/CFS be diagnosed with a blood test?
• Why ME/CFS genetics matters
This talk will cover:
• What genetics reveals about disease-relevant genes, cells and systems
• Sequence ME & Long COVID: latest updates
.Is ME/CFS one condition or many?
• Q&A with Professor Ponting
24th September 2026 7 - 8pm (NZ time)
Click to join here meet.google.com/mdq-sjcc-kyf
About our Guest Speaker
Chris Ponting is Chair of Medical Bioinformatics at the University of Edinburgh. He started research as an experimental particle physicist before transitioning via structural biophysics and computational genomics, into functional genomics and human disease genetics.
Chris provided leadership in international genome sequencing projects and has published over 370 articles. He is Chief Investigator of the ongoing DecodeME project, which now includes the whole genome sequencing of 6,000 people with ME/CFS ("Sequence ME & Long Covid").
Learn more: edwebprofiles.ed.ac.uk/profile/chris-ponting
info@mesupport.org.nz
www.mesupport.org.nz
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George Monbiot @georgemonbiot.bsky.social · 21/09/2026
Thanks so much everyone for a massive response. I've now had as many emails as I can cope with, so no more please - thank you. They paint a really grim and heatbreaking picture. The neglect and abuse of patients goes on and on. I hope to try to do the issue justice. #ME/CFS
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George Monbiot @georgemonbiot.bsky.social · 21/09/2026
Intending to write another column about the treatment of #ME/CFS patients this week, pegged to new research findings on the biological basis. My question for sufferers: Are any of you still being offered inappropriate (psych/GET etc) "treatments"? Please email george at monbiot dot info. Thanks.
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ME Research UK @meresearchuk.bsky.social · 14/09/2026
In the third deep-dive of our Symptom Saturday series, we explored sleep dysfunction in ME/CFS – including lived experience, patterns of sleep disruption, and research suggesting challenges across the brain and nervous system. tinyurl.com/sleepdyssymp... Survey: tinyurl.com/sleepdyssurv...
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Tom Kindlon @tomkindlon.bsky.social · 17/09/2026
Great to see Alem (Matthees) has just joined Bluesky @alemmatthees.bsky.social #MEcfs #PwME
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Tom Kindlon @tomkindlon.bsky.social · 15/09/2026
🧵 I thought this 7-page introductory piece written by a medical doctor was very good "Understanding ME/CFS An Introduction to a Complex Illness" (August 2026) by @drmichaelabauer.bsky.social storage.e.jimdo.com/file/1caec72... #MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome 1/
"Understanding ME/CFS An Introduction to a Complex Illness"
Dr. med. Michaela Bauer · August 2026

Image of a female reading a book entitled "ME/CFS Myalgic Encephalomyelitis/Chronic Fatigue Syndrome"
with 5 thought bubbles showing what she is thinking about
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ME/CFS Science @mecfsscience.org · 14/09/2026
1) There's a new consensus statement on ME/CFS diagnosis and assessment by 19 experts. The table below shows some of the objective tests they recommend for various symptom domains including a standing test, polysomnography, actigraphy, CPET, NK cytotoxicity, etc.
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Chris Ponting @cgatist.bsky.social · 14/09/2026
📢 New ME/CFS genetics preprint from the Beentjes/ Khamseh/ Ponting groups NB: Not DecodeME We discover 7 genetic associations to ME/CFS that are independently replicated in UK Biobank and/or All of Us ME/CFS case/control status required multiple lines of evidence www.medrxiv.org/content/10.6...
ME/CFS cases (or controls) were defined using multiple lines of evidence in 2 independent UK Biobank cohorts, and 1 independent All of Us cohort. We needed to restrict genetic ancestry to Europeans to minimise the chance of spurious associations. Next, we used TarGene to estimate the effects of genetic variants on ME/CFS risk. Finally, we replicated 7 variants that were both significant in a Discovery GWAS, and in one of two Replication GWAS.
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Tom Kindlon @tomkindlon.bsky.social · 09/09/2026
10 years today, after a David vs Goliath FOI legal battle that damaged Alem Mathees, White et al were forced to release data from PACETrial (that cost UK taxpayers £5M) showing graded exercise therapy & CBT didn’t lead to an increased recovery rate for CFS. Please remind the world #MEcfs #PwME #CFS
 Rethinking the treatment of chronic fatigue syndrome-a reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT
Carolyn E Wilshire  1 , Tom Kindlon  2 , Robert Courtney  3 , Alem Matthees  4 , David Tuller  5 , Keith Geraghty  6 , Bruce Levin  7
Affiliations Expand

    PMID: 29562932 PMCID: PMC5863477 DOI: 10.1186/s40359-018-0218-3 

Abstract

Background: The PACE trial was a well-powered randomised trial designed to examine the efficacy of graded exercise therapy (GET) and cognitive behavioural therapy (CBT) for chronic fatigue syndrome. Reports concluded that both treatments were moderately effective, each leading to recovery in over a fifth of patients. However, the reported analyses did not consistently follow the procedures set out in the published protocol, and it is unclear whether the conclusions are fully justified by the evidence.

Methods: Here, we present results based on the original protocol-specified procedures. Data from a recent Freedom of Information request enabled us to closely approximate these procedures. We also evaluate the conclusions from the trial as a whole.
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Adam @abrokenbattery.bsky.social · 05/09/2026
“My daughter was told to exercise and ended up in a wheelchair... For GPs not to be aware of the harm that exercise can do is hugely damaging.” Janet Sylvester (MEAction Scotland), speaking about her daughter Emma, who has ME, while giving evidence to the Scottish Parliament. Sept 2026.
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ME/CFS Science @mecfsscience.org · 04/09/2026
1) A new paper on ME/CFS is getting media attention: it's about how the chromosomes containing our DNA are folded. These 3D structures can influence the expression of genes. Unfortunately, I don't think this study warrants all the attention...
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Sky News @news.sky.com · 02/09/2026
'Revolutionary' metagenomics method can identify illness with just one test
news.sky.com
'Revolutionary' metagenomics method can identify illness with just one test
This new method is helping to monitor for any potential future pandemic outbreaks.
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Adam @abrokenbattery.bsky.social · 01/09/2026
Karen Gordon Update Sign the petition www.change.org/p/save-karen...
Update
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Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 30/08/2026
Working in partnership with Jonathan Edwards at UCL, Jo Cambridge’s research revolutionised understanding and treatment of rheumatoid arthritis. Like Jonathan, she later turned her attention to investigating the mechanisms of ME/CFS. Her death is a great loss.
theguardian.com
Jo Cambridge obituary
Other lives: Professor whose research led to immunotherapies that have improved the lives of countless individuals
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Long Covid The Answers @longcovidanswers.bsky.social · 27/08/2026
Professor Eva Untersmayr explores the complex relationship between the immune system, Long COVID and ME/CFS, including evidence of immune deficiencies in a subgroup of people. #LongCOVID #MECFS #ImmuneSystem #PAIS #ISLCPAIS #longcovidtheanswers
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Long Covid The Answers @longcovidanswers.bsky.social · 26/08/2026
Long COVID isn’t new. We’ve just been failing to measure it. Professor Ziyad Al-Aly highlights a critical blind spot in epidemiology: we measure infection, hospitalization and death, but not what happens after day 30. #LongCOVID #PAIS #ISLCPAIS #longcovidtheanswers
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ME/CFS Science @mecfsscience.org · 29/08/2026
1) New blog article: the hormone prolactin rises much higher in ME/CFS patients after taking buspirone than in controls. This is one of the most replicated findings in the field but for years this line of research was abandoned.
mecfsscience.org
Increased prolactin response to buspirone - ME/CFS Science
Multiple studies have found an increased response of the hormone prolactin to the drug buspironeContinue readingIncreased prolactin response to buspirone
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PrecisionLife @precisionlife.bsky.social · 16/07/2026
ME has been misunderstood and underfunded for decades, but there's genuine reason for hope. We spoke with Sonya Chowdhury, CEO of @actionforme.bsky.social, about ME/CFS, the progress that is transforming research, diagnosis and care, and what still needs to be done. precisionlife.com/biology-matt...
precisionlife.com
ME/CFS: From Neglect to New Hope | Biology Matters
Watch Steve Gardner interview Action for ME CEO Sonya Chowdhury for the Biology Matters podcast on ME/CFS, long COVID, breakthroughs and reasons for hope.
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Tom Kindlon @tomkindlon.bsky.social · 25/08/2026
Todd Davenports PhD’s thread on ME/CFS vs Long Covid threadreaderapp.com/thread/20916... #MEcfs #LongCovid #PwME @sunsopeningband.bsky.social
threadreaderapp.com
Thread by @sunsopeningband on Thread Reader App
@sunsopeningband: Given the online discourse of the past couple of days, I can see that it's time for more #ThoughtsFromthePEZDispenser. PEM has longstanding consensus case definitions. It's always be...
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ME Association @meassociation.org.uk · 25/08/2026
1/2: MP Tessa Munt, who is Chair of the APPG on ME, has written to the new Minister of Health Innovation, MP James Frith, about ME/CFS Read the letter in full: meassociation.org.uk/u3tx #MECFS #pwME #MyalgicE #APPG #SevereME
meassociation.org.uk
Tessa Munt MP writes to new Minister for Health Innovation about ME/CFS - The ME Association
MP Tessa Munt has written to the new Minister of Health Innovation, MP James Frith, about ME/CFS, identifying 5 areas to address.
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Adam @abrokenbattery.bsky.social · 23/08/2026
“But we’re all tired… you don’t look sick… you were fine yesterday” Things not to say to someone with #MECFS. Chloe Mogg and actor and playwright Hollie Christian-Brooke react to some of the comments they've had.
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Open Medicine Foundation (OMF) @openmedf.bsky.social · 20/08/2026
You asked OMF to prioritize post-exertional symptom worsening in CTN Lite trials. We heard you. Your responses will go directly into trial design. This is not background research. (1/2) #pwME #MECFS #MECFSResearch
Cover page of a CTN Lite Survey on post-exertional symptom worsening in ME/CFS patients, focusing on crashes and PEM.
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wamesmecfs.bsky.social @wamesmecfs.bsky.social · 17/08/2026
MERUK starts new series on sxs with a look at PEM. It looks at definitions, research & management. "PEM, cardinal feature of ME/CFS, is debilitating & often unpredictable in nature....It's hard to avoid PEM due to multitude of triggers that can occur on daily basis...." tinyurl.com/txcrnhnb
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wamesmecfs.bsky.social @wamesmecfs.bsky.social · 17/08/2026
MERUK invites people to take part in a survey about PEM. They "are collecting anonymous quotes from individuals with confirmed or suspected ME/CFS on various core symptoms to be used at our discretion online, in print, and for internal organisational education." tinyurl.com/bdhdxekd
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Patient-Led Research Collaborative @patientled.bsky.social · 14/08/2026
A new PLRC-funded study is out from Dr. Rob Wüst and team! The study compared people with #LongCovid and #MECFS to healthy individuals who underwent 60 days of strict bed rest, and the underlying changes were clearly different. 1/ Read: www.nature.com/articles/s41...
nature.com
Skeletal muscle properties in long COVID and ME/CFS differ from those induced by bed rest - Nature Communications
Low aerobic capacity in patients with long COVID and ME/CFS is often attributed to physical inactivity. The authors show that long COVID and ME/CFS patients have distinct skeletal muscle changes that ...
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UK Charity Invest in ME Research @investinmeresearch.bsky.social · 08/08/2026
The #IIMEC18 conference videos are now live. Presentations from Invest in ME Research's 18th International ME Conference, marking 20 years of the charity's research work, are free to watch www.investinme.org/IIMEC18.shtml #mecfs #IMECW2026 #InvestinMEresearch #research #discover-me
20 year anniversary of UK charity Invest in ME Research poster18th International ME Conference 2026 logo
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ME/CFS Science @mecfsscience.org · 16/08/2026
1) Many of the genes linked to ME/CFS in DecodeME point to neural synapses. We therefore did an analysis using SynGo, a large database of synaptic genes. Experts in the field grouped these genes into multiple categories based on their location or biological function.
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ME/CFS Research Foundation @mecfsresearch.bsky.social · 14/08/2026
New guest article: Top 100 therapeutic trials in PAIS. Dr Fred Dejonckheere analyses the global pipeline for #MECFS, #LongCovid, POTS and fibromyalgia. Is a new pharmaceutical market segment emerging here? bit.ly/4xHY5U5
Title slide: New guest article, The Top 100 therapeutic trials in PAIS, by Dr. Fred DejonckheereText slide: Why does this article matter now? Five points on patients, costs and researchText slide: Why PAIS is a blue ocean market, with five points on demand and competitionClosing slide inviting readers to read the full article, with the ME/CFS Research Foundation logo
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Chris Ponting @cgatist.bsky.social · 11/08/2026
What is the evidence that psychosocial factors are direct aetiological factors in chronic diseases? This question, asked by George Davey Smith in 2005, and a follow-up comment from Simon Wessely, snagged my attention. Blog via @simonmcg.bsky.social's site. mecfsresearchreview.me/2026/08/11/o...
mecfsresearchreview.me
On BPS & disease causation: George Davey Smith’s cautionary tale
by Professor Chris Ponting A guide to the Biopsychosocial model recently put out by Long Covid Advocacy ultimately brought me to a 2005 book chapter, written by Professor George Davey Smith, entitl…
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Open Medicine Foundation (OMF) @openmedf.bsky.social · 04/08/2026
Preliminary findings using a PET tracer targeting activated astrocytes suggest a potentially revealing neuroinflammatory profile in #ME/CFS, with effects concentrated in the default mode network and possible difficulty switching out of resting networks. Watch full video here: youtu.be/BBIRZvHPc5E
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