Mark Vink, MD

Samuel, 21: Wie schlimm es sich anfühlt, wenn man an ME/CFS leidet Samuel ist nach einer Covid-Infektion erkrankt. Weil es keine Hoffnung auf Besserung gibt, hat er sich für Sterbehilfe entschieden. Er will Aufmerksamkeit schaffen für die hoffnungslose Lage der Betro...

Dass ein 21-Jähriger wegen schwerster Krankheit, dramatisch fehlender Versorgung und mangelnder Hoffnungsperspektive keinen anderen Weg sieht als Sterbehilfe, ist Ausdruck eines kollektiven Versagens.
#MECFS
www.derstandard.at/story/300000...

Man muss sich bei #MECFS vom Hilflosigkeitsnarrativ lösen, das manche Stakeholder vor sich herschieben, um sich vor der Verantwortung einer normalen Versorgung zu drücken.

"Man weiß zu wenig", um systematische Angebote zu schaffen, ist letztlich vor allem eines: lächerlich.

1/7

44 % Verschlechterung! Ein unglaublich hoher Wert und das bei besseren Bedingungen als anderswo - es muss endlich vorbei sein mit aktivierender Reha!

Folie aus dem CFS_CARE-Projekt mit Ergebnissen nach 12 Monaten. Aufgelistet sind: keine Unterschiede bei Bell-Score, Fatigue, Schmerz und Kognition; keine Unterschiede auch bei weniger schwer Erkrankten. Emotionsbezogene Gesundheit leicht verbessert in der Interventionsgruppe. Zur stationären Rehabilitation: subjektiv besseres Krankheitsverständnis und Alltagsmanagement, aber laut Bell-Score 44 % Verschlechterung und 13 % Verbesserung.

Folie mit Kernaussagen aus CFS_CARE: Eine symptomorientierte Therapie konnte weder die Krankheitsschwere reduzieren noch funktionelle Einschränkungen verbessern. Die derzeitige Praxis, ME/CFS-Patient*innen vor Bewilligung einer Erwerbsminderungsrente in Rehabilitation zu überweisen, sollte überdacht werden.

Grüne Grafik mit dem Text: „Wenn PEM: keine mobilisierende Reha!“ Daneben ein kleines Bild einer Karte mit der Aufschrift „PEM“. Die Grafik warnt vor belastungssteigernden Rehabilitationsmaßnahmen bei Post-Exertional Malaise.

2/2
CFS_CARE zeigte:
Nach stationärer #Reha
44 % Verschlechterung,
nur 13 % Verbesserung
im #Bell -Score.
Zudem keine Effekte auf Fatigue, Schmerz oder Kognition.
Das ist kein bloßes Null-Ergebnis, die Daten zeigen:

Reha bei #PEM #MECFS ist ein Risiko.

#NoRehab #NoGET
#PEMistnichtverhandelbar

100% das.

So viele drastische Verläufe von #MECFS wären vermeidbar.

Vielleicht sollte ich das klarer formulieren: Das #biopsychosoziale Modell ist kein wissenschaftliches Modell. Es versäumt es nicht nur, die Konzepte richtig zu definieren, sondern unterscheidet auch nicht zwischen kausalen, korrelativen und falschen Korrelationsbeziehungen. 1/4

Also worth posting who the four authors of that article are:

Todd Davenport, Staci Stevens, Jared Stevens, Mark Van Ness

Thanks! I just read your article this morning, this is essential reading!

Thanks for the compliment, much appreciated 🙏

The conclusion:
“The findings of this study also underscore the value of two‑day CPET as a useful tool to:
✅ Differentiate PEM from normal recovery using objective measures
✅ Inform disability evaluations in people who can and choose to have a CPET
✅ Improve precision in clinical trials”

A page from a medical journal discusses "Medical Gaslighting," with a highlighted passage about healthcare-induced trauma being an avoidable iatrogenic harm.

“patients who only had a physical disease before they were seen by the medical profession, then suddenly also need to see mental health professionals to deal with the healthcare-induced trauma, which is a form of avoidable iatrogenic harm”

Fro:
Overview of severe ME
www.mdpi.com/2077-0383/15...

FYI, what an American professor with a lot of expertise on the matter says about it:
“we actually do have a biomarker for PEM to be deployed in clinical trials—reduced submaximal work efficiency and early anaerobiosis on the second of a two-day cardiopulmonary exercise test.”

I didn’t think that.

If one, as an example, checks 10 things, and there is a lot of overlap with six of them between patients and controls, but not with the other four, then the six are ill-suited to be a biomarker but the other four on the other hand, are very well suited to be a biomarker.

If analysis of individual data would be correct, then there would be no differences between the 2 groups whereas if you read the article, then there are clear differences between the 2 groups

Moreover, if there are no differences in recovery with controls then maybe those controls are not healthy

One more thing about that screen cap, that is from the introduction and therefore not a reflection of the findings and conclusions of the study.

Just a few important screen caps from that study.

It would be nice if we had a blood test but we don’t. In the absence of that, 2-day CPET is the best biomarker we have even though there are problems with it as it can be harmful and the very and extremely severely ill cannot do it.

"Most doctors do not realize that the fact that tests are normal is no proof that something is psychiatric or psychosomatic, nor do they realize that there is never any proof that something is psychosomatic for the simple reason that such proof does not exist." 🏆

They don’t say that, they simply say there is no biomarker because many people think a biomarker is a blood test.

Besides, if you talk about sensitivity et cetera, is there any test that cannot have false positives and false negatives? A test for rheumatoid arthritis might be false negative in RA.

Published a few days ago:

An Overview of Severe #MyalgicEncephalomyelitis

www.mdpi.com/2077-0383/15...

According to the reviewers “This is not so much a review article as a whole textbook on ME/CFS! It is extremely comprehensive“ and “covers every area of the illness“ etc.

#MEcfs #PwME

Thank you for the compliment, much appreciated 🙏

Please have a look at our key messages, I’ve highlighted the one which is important in this case.

Also, VO2max gives you a clear indication about the severity of the disease for that particularly patient. Just like it does in for example, heart failure. /2

That is incorrect, just read what the paper says itself.

As far as vulnerable patients are concerned, many of those are kicked out of benefit systems because doctors don’t believe in the disease. 2-day CPET Clearly documents the abnormal recovery after exertion. /1

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

Thanks, Tom because there are currently a number of people in different countries in that position whereby doctors refuse to help them with tube-feeding because they don’t believe in their disease

#MEcfs #PwME #MyalgicEncephalomyelitis

Reframing beliefs about their illness does not lead to recovery of tube-fed patients with very severe ME/CFS. Analysis of the BMJ article by Miller et al. What has happened over the last 35 years is that severely ill patients have been ridiculed, gaslit and ignored by the medical profession. These patients have lost hope in the part of the medical profession which has been instrumental in doing and promoting that. They have not lost hope to recover and they are all hoping to get effective pharmacological treatments sooner rather than later as changing their mindset does not lead to recovery. And if it does, then the diagnosis of ME/CFS was simply wrong. Read more here>>

Reframing beliefs about their illness does not lead to recovery of tube-fed patients with very severe ME/CFS. Analysis of the BMJ article by Miller et al. by @huisarts-vink.bsky.social

papers.ssrn.com/sol3/papers....

Image from AMMES Sept Newsletter

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis

'My daughter has ME, she went into appointments walking and came out in a wheelchair' There are an estimated 1.3 million people in the UK with ME 🏥

I did an interview last week about living with ME. This article is the result.
Pleased with it overall, no glaring errors, and most of my key messages are in the article even if she didn't put some of the more 'difficult' points in there verbatim.

#mecfs #pwME

www.scotsman.com/health/me-ch...

Background information to this open letter:
x.com/Huisarts_Vin...
#MEcfs #MyalgicEncephalomyelitis /4

Frontiers | CBT and graded exercise therapy studies have proven that ME/CFS and long COVID are physical diseases, yet no one is aware of that The cognitive behavioral model (CBmodel) (1,2) has dominated the world of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) since the 1990s. Accord...

I also mention our article from 2025 with the following title:

CBT and graded exercise therapy studies have proven that #MEcfs and #LongCovid are physical diseases, yet no one is aware of that
www.frontiersin.org/journals/hum... /3

(PDF) The Aerobic Energy Production and the Lactic Acid Excretion are both Impeded in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome PDF | Abstract Background: In this study the muscle bioenergetic function in response to exercise in severe ME was explored to see if the underlying... | Find, read and cite all the research you need ...

In it I explain who I am and that I have been bedridden with very severe ME for years. I mention my research on myself from 2015, which shows that there is a severe energy production problem in my cells
www.researchgate.net/publication/...
/2

Offener Brief an Prof. Berlit, Generalsekretär der Deutschen Gesellschaft für Neurologie (DGN) als Reaktion auf die Stellungnahme der DGN und das Interview mit Martin Rücker

My open letter to Prof. Berlit, in response to the DGN statement and the interview with @martinruecker.bsky.social /1