ME/CFS News

@oeg_mecfs @RobWust If a patient experiences PEM consistently from activity X it means X is something they can't avoid doing. There are many reasons, unrelated to illness severity, for being unable to avoid an activity.

@oeg_mecfs @RobWust On the milder end, if activity X causes PEM often, you stop doing X. Therefore it's not useful to ask patients how often they get PEM from doing X. For this reason most PEM on milder end is caused by ALL of the exertion during the day, not activity X.

📌Appell: So gelingt Partizipation nicht. Was ihr über den V-PEM-AQ wissen solltet! 🔹 Die ÖG ME/CFS hat den Fragebogen fachlich intensiv beraten, war aber nicht in den weiteren Prozess und nicht in die Veröffentlichung eingebunden. Wir haben im Entwicklungsprozess umfangreiche inhaltliche Unterstützung geleistet. Dazu gehörten Strukturvorschläge, methodische Rückmeldungen, sprachliche Präzisierungen und Hinweise zu realistischen Belastungsstufen aus der klinischen und patientennahen Perspektive. Die nun veröffentlichte Version wurde jedoch ohne vorherige Abstimmung und ohne Abschluss der notwendigen Validierungsschritte online gestellt. 🔹 Warum ist das relevant? Fragebogeninstrumente zu PEM müssen höchsten methodischen, ethischen sowie wissenschaftlichen Standards entsprechen. Teams wie jene hinter dem Funcap55 haben gezeigt, wie viel sorgfältige Arbeit, Validierung, Testung und iterative Überarbeitung notwendig ist, bevor ein Instrument breit eingesetzt werden kann. 🔹 Ohne eine solche Validierung ist ein Fragebogen nicht belastbar. Unvalidierte Instrumente können zu Missverständnissen über PEM führen, falsche Rückschlüsse fördern und wissenschaftliche Erkenntnisse verzerren. Das schadet am Ende Betroffenen, Forschung und Versorgung. 🔹 Was bedeutet das für euch? Die aktuell veröffentlichte Version des Fragebogens erfüllt nach unserem wissenschaftlichen Verständnis die Anforderungen an ein qualitätsgesichertes PEM-Instrument nicht. Wir empfehlen daher, ihn nicht als diagnostisches Hilfsmittel, Studiengrundlage oder Entscheidungshilfe zu verwenden. 🔹 Wie geht es weiter? Wir setzen uns weiterhin dafür ein, dass PEM korrekt, evidenzbasiert und patientennah erfasst wird und dass Instrumente erst dann in Umlauf kommen, wenn Validierung, Qualitätssicherung und Peer-Review abgeschlossen sind. Schreibt eure Fragen gern in die Kommentare.

@AlanCarson15 @jomarshall111 @secretspartacus Holding claims of effective treatment to an adequately high standard is a good thing. For patients and broader society, at least, not for providers of that treatment.

@AlanCarson15 @jomarshall111 @secretspartacus Within the study design used, the effect of GET and CBT is in the same range as the one expected with an ineffective treatment. It's unethical to treat patients with ineffective treatments. I don't believe patients choosing CBT and GET are making an informed choice.

Gosh almost as if it was a functional disorder…

@AlanCarson15 @jomarshall111 @Cindy_Harre @secretspartacus Respectfully, I also want to say that when psychosomatic theorists speak about ME/CFS, I can't avoid the feeling that they have very little contact with patients and have a false picture of the illness in their minds.

@AlanCarson15 @jomarshall111 @Cindy_Harre @secretspartacus ME/CFS patients, at least the ones in my circle, have generally made the experience that the mind is powerless to change the symptoms and that mind-body approaches are just, sometimes harmful, wishful thinking.

Hi all, after DecodeME, the next big study could be SequenceME. Stay informed, and if you can, help make it real actionforme.org.uk/sequenceme-fir…

Our initial DNA results! DecodeME have discovered that people with an ME/CFS diagnosis have significant genetic differences compared to the general population. Summary of our results: shorturl.at/pgsjk Check out our full preprint paper: shorturl.at/VwN3s

@dr_kevinlee At some point of my illness, doctors thought I had some hormonal deficit because I was having hypoglycemia several times a week and had borderline low cortisol. But it's probably part of my ME/CFS. It improved as I got older.

It’s puzzling why so many #pots #dysautonomia CGM profile show nocturnal hypoglycemia. What is the mechanism? There is a fair bit of science behind how brain can control BGL , leptin glucose lowering effect particularly interesting pmc.ncbi.nlm.nih.gov/articles/PMC77…

@RenzPolster This seemed likely given that many people start out mild and progress to severe.

Does severe/very severe #MECFS differ from less severe ME/CFS in degree or in kind, i.e. is (very) severe ME/CFS a different disease than mild or moderate #MECFS? Based on their deep data dive Wengzhong Xiao says: no: healthrising.org/blog/2024/11/0…

@HumorChronic I love your content.

@OnlyEnnui I suspect many believe this but few will say it openly.

A guy on #Newsnight has just said that “ppl with disabilities, who are costing the government money, should just die.” I missed the context but there are a lot of ppl both in the U.K. & the US who basically believe this. If you are one of them remember - you could become disabled

New pre-print from Prof Jonathan Edwards: The Concept of ME/CFS qeios.com/read/NXCXM1 #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

@FT Many adults struggle to accept that their child's health has been damaged and instead prefer alternative explanations.

@FT The health of the population has been damaged by the virus, which by the way, continues to circulate and do damage. The harm done to children and adolescents is probably underestimated because it depends on adults acknowledging it.

The number of sick days taken in Germany has risen sharply since the pandemic. Why? on.ft.com/4hvxxxT

Now published CDC-funded study: Cognitive assessment in #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome (ME/CFS) frontiersin.org/journals/neuro… "The challenges of a clinic visit (including cognitive testing) can lead to further cognitive deficits" #MEcfs #CFS #PwME

@Biwe94 Mich interessiert, woran du erkennen kannst, belastungsfähig genug zu sein um arbeiten zu können.

Sooo, ab morgen bin ich offiziell kein Berufsunfähigkeitpensionist mehr in Österreich. Ganz ehrlich, ich bin ziemlich froh darüber, dass ich zumindest wieder Teilzeit Arbeiten kann und kein BU-Pensionist/Frührentner mehr bin.

We are excited to announce an $800,000 donation to Mount Sinai to support a clinical trial of the drug rapamycin in patients with long COVID. The trial will be conducted at CoRE: a clinic directed by Dr. David Putrino and PolyBio's Dr. Amy Proal: polybio.org/polybio-suppor…