Palliativmediziner und Experten fordern bessere Versorgung für ME/CFS-Patienten Nach einem öffentlich gemachten assistierten Suizid eines Patienten werden erneut Forderungen nach einer besseren medizinischen und sozialen Versorgung sowie Ausbildung und Forschung zu der Erkrankung...

Man liest diese Artikel, im Kern seit Jahren mit gleichem Inhalt, der aber von zunehmend mehr Ärzt*innen getragen wird, und fragt sich:

Was sind die Motive derer, die offenkundig normale medizinische und soziale Versorgung von #MECFS aktiv behindern?

www.derstandard.at/story/300000...

I though crime was the main point of crypto?

Ah yes, another study that reveals my lived experience. #LongCovid

I’m posting this now because Pusha T just performed at the Grammys tonight.

Agreed!

CW Edited clip from an ORF report on the death of Samuel by assisted suicide.

Highlights that many people don’t know about the illness, there are no effective treatments, there is a lack of care, services, financial aid and support for people with #MECFS in Austria.

She also later quoted polyvagal theory as a defense of her claim that trauma was causative in these illnesses and important in treatment. She also said things like: these diseases will remain undiagnosable. Said drug treatments were people looking for short cuts. Etc. so there are more problems here

https://digital.nhs.uk/data-and-information/publications/statistical/nhs-sickness-absence-rates/october-2025 NHS Sickness Absence Rates

What could possibly explain the trend line in this chart?

#LongCOVID
#COVID
#medsky

digital.nhs.uk/data-and-inf...

NHS Sickness Absence Rates, October 2025

1) Dr. Danilo Buonsenso in the Lancet Infectious Diseases:

"... prevention of infection alone will not be enough to reduce the public health impact of long COVID. Finding a cure for long COVID needs to become a top research and health-care priority."

1) Peter Novak's dysautonomia clinic in Boston reports that ME/CFS and Long Covid patients have increased rates of:

- reduced cerebral blood flow (ca 90%)
- small fiber neuropathy (ca 50%)
- postural tachycardia (ca 20%) and hypotension (ca 15%)
- preload failure (ca 90%)

Perfectly put Elke, thank you!

The flip side of 'thresholds theory': 'layering on' different behaviours ('supplements, sunshine') to get the body in the best state to allow it to do its thing which is heal ('improving a base level of health that has then the potential to allow your body to do what it's designed to do'). Big assumptions here. My experience - the better I pace, eat, rest, sleep, etc, the better I can cope with my symptoms which may be dampened down as opposed to heightened. But if I let any of it slip - increase in symptoms, worse PEM, worse crashes. 'Could do better' - I know, but sometimes life gets in the way.

By still being ill, I clearly have never made it to the point where I have done enough to allow my body to 'do its thing' - so this hypothetical theory of 'layering' is introducing the idea that it may be my fault that I'm still ill. And it may lead to others thinking that maybe it's her own fault that she's still ill. 'Has not done enough to get herself better’. Quite apart from whether this theory is plausible or not, by focusing all attention onto a patient's behaviour, it contains the seeds of patient blaming.

We do all have agency in how we respond to our illness. It is fine to advise on behaviours that may help individuals to cope better with and to dampen down their symptoms. But speculating that those behaviours can do any more than that may be doing harm. It puts pressure onto people: 'must do more’. There is a downside to encouraging people to hope that with every therapy they try, that it may finally provide the 'tipping point' that flips their body back into 'homeostasis' and lead to a full recovery - the disappointment when it all ends in an inevitable crash again can be devastating. Long Covid and ME are hard enough to live with. Let's not make it harder.

Not a comment on the interview with Todd Davenport - but on the first 13 minutes of introduction

#LongCovid
#ME

#26 The truth about exercise & pacing in ME/CFS, Long Covid, POTS, with Todd Davenport

pod.link/1767819213/e...

1) This graph from the German ME/CFS Research Foundation shows the ca. €4 million in funding they collected since 2022 and how they've spent the money.

Administrative costs are borne by the founder, so pretty much all donations go to ME/CFS research.

Having someone as tenacious and patient oriented as you and your group working on this gives me and us hope! Thank you

I'm watching today's RECOVER-TLC webinar, where NIH and FNIH staff are sharing updates on the agency's clinical trials initiative. Doing a bit of liveblogging in this thread, and we might have a news story up at @thesicktimes.org later if they announce anything noteworthy.

Es macht, gerade wenn man regelmäßig Menschen mit #MECFS sieht, einfach nur mehr wütend, diese Geschichten zu hören.

Beschwichtigen nützt nichts. Es gibt hier ein katastrophales medizinisches Problem, das durch skandalösen Umgang mehrere Stakeholder zusätzlich verschärft wird.

That’s a good point, thank you!

Kurze Zusammenfassung zum Zusammenhang von #Psychologisierung und #Psychosomatikkritik:

historisch wurde #ME/CFS primär (!) psychologisiert, also ME/CFS=psychisch, „modere Form der Hysterie“. Das hat sich mit den überwältigenden biomedizinische Befunden der letzten Jahre überwiegend erledigt.

Same here.

Not sure if we know the comparable figures for the UK.

The combined cost of Long COVID and ME/CFS on the German economy, largely due to productivity losses and reduced workforce participation, was estimated at €63.1 billion in 2024, or roughly 1.5% of the nation's GDP.

#LongCovid

The question is tho: how did former fascist parties like the NSDAP in Germany create the exact same tensions we see today but in the old environment

Screenshot from Mark Vink's new article, An Overview of Severe Myalgic Encephalomyelitis. "Abstract In this article, we have reviewed the literature on severe myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). ME/CFS is a clinical diagnosis in the absence of a diagnostic test. However, in research settings and disability disputes, 2-day cardiopulmonary exercise testing can be used to diagnose and document the abnormal response to exercise. Biomedical research into this disease has been scarce and underfunded for decades. Consequently, there are no effective treatments. In its most severe form, it is more disabling than many other diseases, and patients are bedbound 24/7, dependent on carers, and spend their days in dark and quiet rooms. Even the soft sound of a human voice can lead to further deterioration. Some of the very severely ill suffer from life-threatening malnutrition and need to be tube-fed. The COVID-19 pandemic has led to a sharp increase in the number of patients with post-infectious diseases, and many of them fulfill ME/CFS criteria. Dedicated, focused research using advanced medical technologies is needed to gain further understanding of the underlying disease mechanism. This will enable us to find effective pharmacological treatments and address the unmet medical needs of these very ill people." Source: https://www.mdpi.com/2077-0383/15/2/805

An Overview of Severe Myalgic Encephalomyelitis - New article by @huisarts-vink.bsky.social just dropped www.mdpi.com/2077-0383/15...

As always, thank you for your excellent work, Mark🙏🏻

#MECFS

The Shingles vaccine has outperformed all expectations. Why?
erictopol.substack.com/p/spotlight-...

A social media post by Diane O’Leary dated Jan 20. The text reads: "I had a similar encounter with Wessley, who was selected as a reviewer for an article on ME/CFS I submitted to Journal of Medical Ethics. Reviewers messed with that thing for a full year! Finally we got it into a form that everyone was excited about - even Wessley - but he had raised some serious legal concerns along the way. Just when the paper was enthusiastically recommended by all reviewers, JME changed editors and the new one flatly refused to publish it. He wouldn’t admit that the legal issues worried him, so there was literally no justification. He just would not budge. It was an appalling thing to do to an author after demanding a year of work on an article. I sent it to Bioethics then, along with the comments and final refusal to publish at JME in spite of an unusual level of enthusiasm from all reviewers. They accepted it immediately, with no revisions. "

A screenshot of a text-based post or comment. The text reads: "The recommendations I made in that article - along with many of the wise recommendations made by the ME community in the UK - were ultimately embraced in the new NICE guideline. I have often wondered whether Wessely recommended my paper knowing that, in the end, his legal concerns would override it. For what it’s worth, I’m guessing the world would be better off overall if you went ahead and published that silenced material. I don’t know the legal issues you’re dealing with, but the power he has over ME discourse is certainly not consistent with usual standards for peer review." At the bottom, there is a heart icon next to the text "LIKE (3)" and a three-dot menu icon.

Dr Diane O'Leary has made an excellent comment on Emily Mendenhall's Substack, revealing she had a similar experience with Wessely.

We agree that the world would be a better place if the silenced material could be published.

Phoenix Rising Articles Neuroinflammation and ME: A Conversation with Professor Anthony Komaroff Jan 21 Today at 7:41 AM Bronc 32 1 Scientific views on the causes of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) symptomology generally converge on a multi-system biological dysfunction, though they emphasize different primary drivers. One major perspective centers on immunological and infectious causes, positing that a viral or bacterial infection (like Epstein-Barr virus or COVID-19) triggers a persistent, low-grade inflammatory state, leading to chronic immune activation and neuroinflammation. A second, closely related view focuses on metabolic and energy dysfunction, suggesting that impaired mitochondrial function and a systemic shift to a hypometabolic state—a kind of chronic energy crisis—is the core problem, directly causing the profound fatigue and post-exertional malaise. A third significant theory highlights neuroendocrine and autonomic nervous system dysregulation, particularly dysfunction of the HPA axis and the autonomic nervous system (dysautonomia), which results...

New written interview:

Neuroinflammation and ME: A Conversation with Professor Anthony Komaroff

forums.phoenixrising.me/threads/neur...

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #LongCovid #NeuroPASC

Nope it’s all just conjecture presented as evidence as per usual in the BPS sphere

No my bad! To quick there, seems they actually used Canadian Consensus Criteria

I’m really loosing faith in you trying to be an ally when you don’t listen to the responses of the patient population you’re writing about. You don’t speak for us without us.

BJGP Life Book review: Psychology's Quiet Conservatism: How a Supposedly Woke Science Promotes Capitalism and Protect Privilege A positive review by Elke Hausmann of professor Brian Hughes' latest book. "Anyone who has read any of my previous articles will know that I am engaged with the discussions around long COVID and myalgic encephalomyelitis, and part three of this book addresses those topics, among references to other medical conditions. This section deals with ‘the psychologising of the sick’ (beyond the chapter with that title), and any GP who isn’t aware that our treasured ‘biopsychosocial’ approach to patients is not universally seen as positive by everyone (and with good reason), will find a lot of background information as to why that is the case."

Book review by Dr Elke Hausmann @drelke.bsky.social : Psychology's Quiet Conservatism: How a Supposedly Woke Science Promotes Capitalism and Protect Privilege

bjgplife.com/book-review-...

Screenshot from latest Science for ME weekly update

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #LongCovid

#LongCovid

@emendenhall.bsky.social