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calltobase.bsky.social

@calltobase.bsky.social
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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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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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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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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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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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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/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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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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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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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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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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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 Science @mecfsscience.org · 15/08/2026
For people interested in details of this study on brain scans and hypoxia in ME/CFS. One of the authors wrote a very thoughtful reply to comments about the study on the S4ME forum. Read the discussion here: s4me.info/threads/expe...
s4me.info
Preprint - Experimental hypoxia to probe neuro-metabolic and vascular dysregulation in ME/CFS: a multimodal proof-of-concept MRI study, 2026, Bader et al.
Now, when exposed to the simulated hypoxic conditions, the Lac/tCr ratio increases less than healthy controls, this could mean there is a lesser capacity for additional compensatory glycolysis to be g...
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Tessa Munt MP 🔶 @tessamunt.bsky.social · 15/08/2026
Congrats to James Frith MP, newly appointed as the Minister for Health Innovation, with responsibility for ME. I’ve written to him on ME emphasising that given the numbers, and the length and extent of suffering, ME represents a significant burden at personal level, to society and to our economy.
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ME/CFS Science @mecfsscience.org · 15/08/2026
1) The WE&ME Foundation has created an 'Emerging Leader Award'. It recognises outstanding early-career researchers who combine scientific excellence with meaningful engagement in ME/CFS or related post-infectious diseases. The application deadline is 15th October 2026.
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Putrino Lab @putrinolab.bsky.social · 10/08/2026
Excited to share some new science in pre-print this morning! We have completed the world's first intravitreal autologous mitochondrial transplant in a human. Let's breakdown what we did and what this means, even starting from the title (!) www.researchsquare.com/article/rs-1... 1/
researchsquare.com
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Hannah Davis @ahandvanish.bsky.social · 28/05/2026
Large study (av age 45) shows people with #LongCovid are 4.48x more likely to have a Major Adverse Cardiovascular Event (stroke, pulmonary embolism, heart failure) & 53% more likely to die. True regardless of age, BMI, vaccination, variant. Risks last 3+ years from infection. 1/
4 graphs showing increasing risk of MACE, coronary artery disease, stroke, and mortality in LC vs non-LC
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ME/CFS Science @mecfsscience.org · 10/08/2026
1) 🇨🇦 Disappointing to see that McMaster University is sponsoring a trial of the Lightning Process for Long Covid. The study isn't blinded and only uses subjective outcomes such as fatigue questionnaires so its results will be biased by expectations and therapist instructions
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ME/CFS Science @mecfsscience.org · 07/08/2026
6) Suspect this is reversing causality; severe illness is causing less light and more darkness, not the other way around. There was already a small RCT of bright light therapy for ME/CFS, and it found no effect. Link:
sciencedirect.com
Assessing fatigue in myalgic encephalomyelitis/chronic fatigue syndrome patients before and after treatment with bright light therapy: A prospective randomized controlled crossover study
The aim of the current study was to test the effectiveness of treatment with bright light therapy (BLT) on fatigue and cognitive function in patients …
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ME/CFS Science @mecfsscience.org · 08/08/2026
1) 🇩🇪 In the CoCo-Fakt study at Cologne and Ausberg, patients with Long Covid reported doing more and more intense physical activity than controls who had COVID-19 but no long term symptoms. The researchers expected the opposite.
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ME/CFS Science @mecfsscience.org · 06/08/2026
1) 🇺🇸 A new NIH study argues that the fatigue experienced by ME/CFS patients likely has a central (in the brain) rather than a peripheral (in muscle) origin. They put patients in an MRI scanner and recorded electromyography during grip strength exercises. A brief breakdown.
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Billy Hanlon @bhanlon15.bsky.social · 04/08/2026
'New curriculum empowers future healthcare providers to recognize and treat Long COVID' 'For Dr. Bonilla, the work is personal. He has spent years caring for people with Long COVID and related conditions such as myalgic encephalomyelitis..(ME/CFS)' recovercovid.org/news/new-cur...
recovercovid.org
New curriculum empowers future healthcare providers to recognize and treat Long COVID
A free online curriculum called LEARN prepares future healthcare providers to care for people with Long COVID. Built by doctors and students at 2 RECOVER study sites, LEARN bridges a gap some medical ...
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Bateman Horne Center @batemanhornecenter.bsky.social · 04/08/2026
Five organizations. One conversation. Join the #UnitedForME collaborative on Tues, Aug. 12 at 10 a.m. MDT for a special "Coffee" with a Clinician recognizing #SevereMEAwareness Month.   Register here: bit.ly/3JCHAFq @openmedf.bsky.social @solveme.bsky.social @meactnet.bsky.social
Coffee with a Clinician event poster for Severe ME/CFS Awareness Month, showing six speakers' headshots and their titles.
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Tom Kindlon @tomkindlon.bsky.social · 04/08/2026
Central origin of fatigability in Myalgic encephalomyelitis/chronic fatigue syndrome revealed by multimodal neuroimaging www.sciencedirect.com/science/arti... Screenshot from latest Science for ME weekly update #MEcfs #PwME #CFS #ME #MyalgicE
Central origin of fatigability in Myalgic encephalomyelitis/chronic fatigue syndrome revealed by multimodal neuroimaging — Bedard et al
"Our most novel results relate to the lack of neuromuscular adaptation in ME/CFS compared to the [Healthy Volunteers]." "ME/CFS did not change their muscular and brain activity as measured via DI, EEG, BOLD, and CMC, and as a result, they demonstrated fatigue earlier than HV"
Article | Thread
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ME/CFS Science @mecfsscience.org · 04/08/2026
1) Had a closer look at this randomised trial on pacing from earlier this year. It tested an app, warning system, and wearable device to help Long Covid patients pace, but unfortunately, it didn't have an effect on post-exertional malaise (PEM) and other symptoms.
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Tom Kindlon @tomkindlon.bsky.social · 28/07/2026
News Release 28-Jul-2026 Genetic risk factors of fibromyalgia identified in largest study of its kind www.eurekalert.org/news-release... Full paper: The genetic architecture of fibromyalgia across 2.5 million individuals www.nature.com/articles/s41... #Fibromyalgia #Fibro #FMS #FM
News Release 28-Jul-2026
Genetic risk factors of fibromyalgia identified in largest study of its kind
Peer-Reviewed Publication
King's College London

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EMBARGO: Tuesday 28 July 2026 at 10:00 (UK time), 28 July 2026 at 05:00 (US Eastern Time)

Peer-reviewed / Observational study / People

Genetic risk factors of fibromyalgia identified in largest study of its kind

New genetic risk factors have been identified for fibromyalgia syndrome.

The landmark study, which involved scientists at King’s College London, published in Nature Medicine, highlights how the nervous system plays an important role in the development of the disorder.

Fibromyalgia is characterised by widespread pain and tenderness, fatigue, and problems with sleep, memory and mood. Despite affecting about two per cent of the global population its biological causes have remained unclear. The results of this study are an important step towards resolving that uncertainty.

The team analysed genetic data from more than 2.5 million adults, of which 55 thousand had been diagnosed with fibromyalgia. The researchers scanned millions of genetic differences across the DNA of people with and without fibromyalgia to find changes that were more common in those with the condition. This enabled them to identify DNA sequence variants in 26 regions of the genome that affect the risk of developing fibromyalgia. Many of the genes implicated in these regions are involved in brain and nerve function.
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Billy Hanlon @bhanlon15.bsky.social · 03/08/2026
Fortune: 'Exclusive: Former OpenAI exec Fidji Simo discusses her battle with POTS and her startup’s plans to cure it with AI and 3,500 vials of blood (so far)' fortune.com/2026/08/03/f...
fortune.com
Exclusive: Former OpenAI exec Fidji Simo discusses her battle with POTS and her startup's plans to cure it with AI and 3,500 vials of blood (so far) | Fortune
Simo is a cofounder of ChronicleBio, which aims to cure complex chronic diseases by analyzing biological data with the latest AI models.
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Tom Kindlon @tomkindlon.bsky.social · 03/08/2026
From Spain Neuroretinal Alterations in Persistent COVID-19: A Two-Year OCT Follow-Up www.mdpi.com/2077-0383/15... "The results of this study suggest the presence of region-specific inner retinal changes in PC patients when compared with control subjects." #LongCovid #Eyes
mdpi.com
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Tom Kindlon @tomkindlon.bsky.social · 01/08/2026
An exploratory exome-wide machine learning analysis identifies candidate host gene signatures associated with Long COVID in a large admixed Brazilian cohort www.frontiersin.org/journals/med... Screenshot from Science for ME update #LongCovid #postcovid #PASC #PwLC #postcovid19 #Covidlonghaulers
An exploratory exome-wide machine learning analysis identifies candidate host gene signatures associated with Long COVID in a large admixed Brazilian cohort — Zetum et al
"this study provides a hypothesis-generating integrative framework for investigating host genetic contributions to LC in an underrepresented admixed population."
Article | Thread
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Dr. Sabine Hermisson 🦋 @sabinehermisson.bsky.social · 29/07/2026
We're pleased to announce the English version of our transdisciplinary care guide for people with severe #MECFS. We hope it will help family caregivers, healthcare professionals, and policymakers improve care for one of the world's most underserved patient populations.
https://rdcu.be/fwCA7
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ME/CFS Science @mecfsscience.org · 28/07/2026
1) 🇩🇪 The results of the PsyLoCo study have been published. It tested group psychotherapeutic treatment in 48 Long Covid patients. The results showed no significant effect on symptoms, anxiety or depression.
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ME/CFS Science @mecfsscience.org · 27/07/2026
1) 🇩🇪 There's now more info about the PIONEER study which will test inebilizumab (a drug that targets B-cells), in a subgroup of ME/CFS patients. It's a randomised trial at the Charité that aims to include 38 participants.
Screenshot of the trial registration for the PIONEER trial on inebilizumab
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betsy ladyzhets 😷 @betsyladyzhets.bsky.social · 21/07/2026
Today @thesicktimes.org: @spichaksimon.bsky.social wrote a detailed explainer on how to interpret clinical trial results, focusing on issues that come up specifically for Long COVID trials. thesicktimes.org/2026/07/21/h...
thesicktimes.org
How to interpret clinical trial results for Long COVID - The Sick Times
With no proven treatments or cures, many people with Long COVID are turning to off-label medications, supplements, and medical devices to treat their symptoms. There are numerous options — and some of...
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