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calltobase.bsky.social

@calltobase.bsky.social
55 followers 153 following 108 posts
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Michael Stingl @neurostingl.bsky.social · 09/10/2026
Und so wird das Stigma, mit dem Menschen mit #MECFS zu kämpfen haben, in einem Fachbuch perpetuiert. Eine tolle Leistung der unbekannten Verfasser dieser Zeilen und ein wirkliches Renommee für den Verlag!
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calltobase.bsky.social @calltobase.bsky.social · 06/10/2026
After all the controversy let’s appreciate that there was some great science going on here. Lots of promise to be found
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Michael Stingl @neurostingl.bsky.social · 06/10/2026
Bin gespannt ob @dgn-ev.bsky.social diese Studie auf ihrer Homepage zur Kenntnis bringen wird. Individualisiertes Training bei Post Covid-POTS, meist mit PEM, hatte nicht nur keinen Effekt sondern verschlechterte auch Zeit in Orthostase, tägliche Schrittzahl. www.sciencedirect.com/science/arti...
sciencedirect.com
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calltobase.bsky.social @calltobase.bsky.social · 06/10/2026
Ah yes that must be it, thank you! My bad
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calltobase.bsky.social @calltobase.bsky.social · 06/10/2026
Isn’t that dataset built on outdated criteria or was it actually CCC?
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calltobase.bsky.social @calltobase.bsky.social · 06/10/2026
Why are you advertising a study that is clearly designed and manned in a way that will only further entrench a dysfunctional and often times actively harmful “rehabilitation” approach not built on science or further research. Heritage is that exactly, the same old sh*t by the same group of people.
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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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calltobase.bsky.social @calltobase.bsky.social · 29/09/2026
Wurde mir irgendwie nicht angezeigt, war wahrscheinlich zu früh dran. Danke!
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calltobase.bsky.social @calltobase.bsky.social · 29/09/2026
Könnten Sie die Petition verlinken?
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Dr. Sabine Hermisson 🦋 @sabinehermisson.bsky.social · 29/09/2026
„Meine Tochter lebt seit 12/25 im Pflegeheim – sie wird immer schwächer. Laut gerichtlich beeidetem Sachverständigen ist sie arbeitsfähig.“ Das schrieb mir eine Mutter, die ihre Tochter nicht mehr selbst pflegen kann. #MECFS
Bild der Kampagne.
Link: https://mein.aufstehn.at/petitions/menschenwurde-statt-misstrauen-fur-ein-faires-begutachtungssystem?source=rawlink&utm_source=rawlink&share=e5227090-4b6a-4b43-915d-4d1cfb29a0d9
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ME/CFS Science @mecfsscience.org · 29/09/2026
1) An initiative worth sharing: The Severe & Very Severe ME Research Registry. It's a website that provides access to research for severely and severely affected ME/CFS patients from Germany, Austria and Switzerland (DACH region).
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calltobase.bsky.social @calltobase.bsky.social · 28/09/2026
A whole ass study about: “how can we spend even less money on it” eating up all the funding really is the cherry on fucking top. An insult to any patient. And yall are platforming this? We need biomedical research not this tired excuse propping up the more than questionable bacme bs.
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Chris Ponting @cgatist.bsky.social · 28/09/2026
Two signals in TMEM106B & VWDE locus. Associations affect gene regulation not protein sequence. Genome wide: the pituitary tissue is the most enriched in gene expression. Is #MEcfs genetics similar to other diseases? Yes! Long Covid and fibromyalgia have strong genetic correlations w MEcfs.
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Long Covid Advocacy @longcovidadvoc.com · 26/09/2026
📻 Superb @georgemonbiot.bsky.social Interview on LBC with Natasha Devon. "A long & vicious history in this country of dismissing predominantly female diseases & calling them hysterical." 🔥 Thank you George & Natasha 🙏
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calltobase.bsky.social @calltobase.bsky.social · 24/09/2026
You’re a saint for covering all this, thank you!
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calltobase.bsky.social @calltobase.bsky.social · 24/09/2026
Such an important topic to discuss, those thousands of people can’t just fall through the grid anymore
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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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calltobase.bsky.social @calltobase.bsky.social · 21/09/2026
So grateful to you that you continue on this uncomfortable topic that most seemingly would prefer to forget. 🩶
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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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calltobase.bsky.social @calltobase.bsky.social · 21/09/2026
Yeah that group really is a scourge on Long Covid sufferers and has all the wrong connections to the old guard. The lightning process trial sadly has actually just been funded, so the grift continues
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calltobase.bsky.social @calltobase.bsky.social · 21/09/2026
(Gupta) Grant: cordis.europa.eu/project/id/1... And then there’s the lightning process thing Trial: clinicaltrials.gov/study/NCT076... As summarized by Tuller: virology.ws/2026/08/22/t... 2/2
cordis.europa.eu
Decision support for prediction and management of Long Covid Syndrome (LCS) | Long Covid | Project | Fact Sheet | HORIZON | CORDIS | European Commission
We will develop tools and knowledge to support physicians in accurately managing Long COVID syndrome (LCS) which has a significant impact on sufferers as well as their surroundings. Although much is n...
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calltobase.bsky.social @calltobase.bsky.social · 21/09/2026
ME/CFS Sscience wrote a very good blog on it, I got it mixed the trial is only one part of that Horizon Europe grant but it doesn’t even limit itself to post viral conditions. The usual trickery Blog: skywriter.blue/@mecfsscienc... Protocol: journals.plos.org/plosone/arti... 1/2
skywriter.blue
Page by ME/CFS Science | @mecfsscience.org
1) 🇪🇺 The controversial European project on Long Covid includes a randomized trial on amygdala retraining and online CBT. In a preliminary analysis, both fared no better than usual care. ...
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calltobase.bsky.social @calltobase.bsky.social · 21/09/2026
And paid programs that operate like cults continue without consequence and even get millions in funding funneled away from biomedical research
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calltobase.bsky.social @calltobase.bsky.social · 21/09/2026
The EU has just funded an 8,5 million Gupta “Amygdala retraining” trial, prelim results showed no improvement over placebo. Another trial is being set up for the “lightning process” by different funders. The BPS lobby is alive & well, they’d still like an easy excuse to dismiss further investigation
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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/CFS Science @mecfsscience.org · 20/09/2026
1) The team of Andreas Goebel was the first to transfer autoantibodies of fibromyalgia patients to mice (similar studies later followed in Long Covid). In this paper, they tested rozanolixizumas: a drug that lowers circulating antibody levels. A brief summary of the results 👇
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calltobase.bsky.social @calltobase.bsky.social · 17/09/2026
To be fair a lot of trading is automated and responds directly to headlines these days. So it might have just been the “failed primary endpoint” headline leading to that effect
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Bettina Grande @bettinagrande.bsky.social · 15/09/2026
Gemeinsame Stellungnahme aus Versorgung und Wissenschaft Über 30 Unterzeichnende aus Medizin, Psychotherapie und Forschung positionieren sich gemeinsam für eine differenzierte, respektvolle und sachlich angemessene Haltung gegenüber Menschen mit ME/CFS. #MECFS psychotherapie-mecfs.de/stellungnahme
psychotherapie-mecfs.de
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calltobase.bsky.social @calltobase.bsky.social · 14/09/2026
Thanks so much for sharing and all you do!
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calltobase.bsky.social @calltobase.bsky.social · 14/09/2026
Thank you for your work! Could you explain how this relates to your previous Decode ME findings? Were they not replicated here?
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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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ME/CFS Science @mecfsscience.org · 11/09/2026
1) This study found that ME/CFS patients often have too low blood and low red blood cell volume. But surprisingly, these measures weren't related to orthostatic intolerance as measured by a lean test. This suggest that hypovolemia isn't the main reason for orthostatic problems.
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ME/CFS Science @mecfsscience.org · 05/09/2026
1) I looked at the big genetic study on fibromyalgia (Kerrebijn et al. 2026) and how well it correlated with findings for ME/CFS in DecodeME. Using European samples, the correlation was quite big: rg = 0.75. A brief discussion of the implications 👇
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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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Michiel @murtoz.bsky.social · 03/09/2026
Well I'll be damned. Bacme published the results of their survey into tube feeding for #ME/CFS. Based on a very high level skim read, it's not actually terrible? I don't think any of us would disagree with their conclusions. They said TPN (IV nutrition) was out of scope bacme.info/wp-content/u...
Conclusions:
- Nutritional problems are common, serious and often recognised too late.
- Nutritional compromise in ME/CFS is multifactorial and requires comprehensive assessment.
- Tube feeding can be lifesaving but is complex and requires individualised decision-making.
- Unpaid carers provide a substantial proportion of support and must be included in decisions.
- Current service provision and clinical pathways are inadequate and responsibility is often unclear.
- Improved education, research, clinical guidance and specialist services are urgently needed.
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ME/CFS Science @mecfsscience.org · 02/09/2026
2) He writes: "By investigating a proprietary, fee-based intervention without incorporating objective biological markers, the trial risks lending academic legitimacy to bogus quackery."
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ME/CFS Science @mecfsscience.org · 02/09/2026
1) Dr. Edzard Ernst, who often writes critically about alternative medicine and pseudoscience, has written a blog about this Lightning process trial for Long Covid.
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betsy ladyzhets 😷 @betsyladyzhets.bsky.social · 01/09/2026
Today @thesicktimes.org: Lots of details from me on the Department of Defense grant funding a new Long COVID clinical trials program. The story includes context on past DOD medical research funding, comments & slides from Michael Peluso (PI of the new program), and more:
thesicktimes.org
Department of Defense funds $8 million grant for Long COVID trials - The Sick Times
A new U.S. clinical trials program called PROBE-PASC was announced on Friday at a Long COVID conference in Amsterdam. The program received initial funding of $8 million from a Department of Defense (D...
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Tom Kindlon @tomkindlon.bsky.social · 01/09/2026
From Spain: Gut microbiota dysbiosis in Post-COVID condition symptoms: relation with chronic fatigue and functional limitation link.springer.com/article/10.1... Screenshot from latest Science for ME weekly update #LongCovid
Gut microbiota dysbiosis in Post-COVID condition symptoms: relation with chronic fatigue and functional limitation — Carpallo-Porcar et al
"this pilot study found that individuals with PCC show taxon-level gut microbiota differences compared to healthy controls, with further differentiation according to ME/CFS status and functional capacity." "These associations are exploratory; causality cannot be inferred from a cross-sectional design, and confounding variables could not be fully controlled."
Article | Thread
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calltobase.bsky.social @calltobase.bsky.social · 01/09/2026
Cherry picking examples of people misbehaving doesn’t tell the full story. All in all your life depends on the work researchers do. Not on them being saints. Criticism can and should be constructive when it comes to allies. Culturing outrage in this distorted manner doesn’t help anyone.
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Tom Kindlon @tomkindlon.bsky.social · 25/08/2026
European Federation of Neurological Associations (EFNA): “Patients with ME cannot wait for a cure before the harm stop” by Ona Albizu PhD www.efna.net/patients-wit... #MEcfs #PwME #MyalgicEncephalomyelitis
European Federation of Neurological Associations (EFNA)
PATIENTS WITH ME CANNOT WAIT FOR A CURE BEFORE THE HARM STOPS – ONA ALBIZU
For many years, I have lived with moderate/severe myalgic encephalomyelitis (ME). I was housebound and dependent on others for some basic activities of daily life. The disease itself has taken away many aspects of the life I once had. But the suffering caused by ME does not come only from the disease.
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Prof Nisreen Alwan @nisreenalwan.bsky.social · 24/08/2026
Why were people asked which one to prioritise air con or reducing emissions? Why pitch this as either or? This is a good example of how designing your survey question can reveal the predetermined direction of the results reporting. www.theguardian.com/environment/...
theguardian.com
Air conditioning push favoured over emissions cuts in six European nations, survey finds
Poll also finds sizeable majorities who believe it should be easier to install air con in homes
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valebodi.bsky.social @valebodi.bsky.social · 23/08/2026
#Omics #ME/CFS An ablation analysis comparing the full interaction-augmented EBM (AUC = 0.940) with a main-effects-only EBM (AUC = 0.882) confirmed that pairwise metabolite co-variation contributes additional discriminative value beyond individual metabolite levels, implicating amino acid
pubmed.ncbi.nlm.nih.gov
Metabolomic Classification of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome via Explainable Ensemble Learning and Pareto-Guided Feature Selection - PubMed
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a debilitating multisystem illness characterised by post-exertional malaise, non-restorative sleep, and cognitive impairment, yet no objective diagnostic biomarkers have been established. Untargeted plasma metabolomics provides a broad v …
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ME/CFS Science @mecfsscience.org · 24/08/2026
4) "It’s not a job. It’s not a calling. It’s not fun. It’s not something I’m proud of. It’s not part of satisfying some silver lining porn. It’s born out of losses, pain and suffocating necessity because at some point I would like to get better."
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betsy ladyzhets 😷 @betsyladyzhets.bsky.social · 18/08/2026
For my story on the FY2027 budget, I reached out to ARPA-H to ask about a line in their budget justification document that I thought might refer to an ask for IACC-related funding. They responded saying actually, IACCs are already included in a couple of active programs:
Email screenshot, text reads: "Thank you for your interest in ARPA-H and for the careful read of the FY 2027 Congressional Budget Justification.
ARPA-H's CBJ narrative describes agency-level focus areas rather than disease-specific funding requests. Congress appropriates top-line funding to ARPA-H, and program funding is set internally through our program-approval processes and operating plans. The note you identified on page 14 of the CBJ describing the objective to "prevent viral illnesses that lead to chronic disease" reflects an intended focus area under Addressing Chronic Disease rather than a distinct "IACC request" moving through the appropriations process. 

Currently, ARPA-H does not have a program specifically focused on Long COVID. However, several active programs advance the science of infection-associated chronic conditions (IACCs), including and beyond Long COVID. The LIGHT program (up to $135.7M over 5 year announced in January 2026) explicitly targets lymphatic contributions to Long COVID and Lyme disease. A related program, GLIDE, pursues lymphatic-targeted interventions, which could impact outcomes for Long COVID and other IACCs. ARPA-H’s APECx program aims to eliminate viruses as current and future health threats — upstream prevention of IACC triggers — and CIRCLE uses AI and computational modeling to better modulate immune responses during critical illness with an aim to prevent post-infectious immune dysregulation and other negative outcomes.
This portfolio is the operational follow-through on the commitments Jason Roos, Ph.D., then-Acting Director of ARPA-H, discussed at HHS Secretary Kennedy's "Invisible Illness: Leading the Way on Long COVID" roundtable in September 2025. Together, they bring ARPA-H's transformative technology model to bear on the underlying biology of IACCs, rather than standing up a single disease-named program..."
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betsy ladyzhets 😷 @betsyladyzhets.bsky.social · 18/08/2026
Advocates are pushing for new Long COVID and ME research funding in the federal fiscal year 2027 budget. For @thesicktimes.org, I described the process, what people are asking for, and how readers can help advocate: thesicktimes.org/2026/08/18/c...
thesicktimes.org
Congress’s 2027 budget could include new funding for Long COVID and ME - The Sick Times
Advocates are calling on senators and representatives to include the ME/CFS Research Roadmap and new Long COVID funding in the fiscal year 2027 budget as legislators debate appropriations bills in the...
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calltobase.bsky.social @calltobase.bsky.social · 17/08/2026
Thank you 🩶
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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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calltobase.bsky.social @calltobase.bsky.social · 17/08/2026
In my experience it truly was. I do believe it can make things better in contrast to GET but the way to get there seems pretty brutal nonetheless. Hope they actually track worsening patients and don’t just throw dropouts out of the statistics.
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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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