Search results

I often have the impression that ME/CFS is an edge case in medicine, one where the advocacy community is quite active and vocal and thus exposes a lot of the deeper problems. These include: The popularity of unfounded psychosomatic theories for illnesses that medicine cannot yet explain or...

Good point. The situation is so absurd it is hard to describe accurately to outsiders.

I don't think it is an official term though, probably more like slang. https://www.vlaamswoordenboek.be/definities/term/Belgisch%20compromis Don't have plans to submit this to a journal, it was more a case of writing down my thoughts before I forget. It is interesting to see how these new...

I've written some of my thoughts about the new reports and guidelines on ME/CFS that have been published over the past 5 years. They seem to form a new consensus, one where PEM is a required criterium for ME/CFS, where GET is no longer recommended and CBT is proposed as a supportive treatment...

I have the impression that the final result is more the result of diplomacy and politics than scientific assessment of the evidence. Take for example the description they use for CBT: "This Therapy should help to better deal with the mental stress caused by the disease. In this way...

Looking back at the report the main thing that stands out is that they only looked at studies that required 80% of patients to have PEM. This meant that they disregarded about 90% of all RCTs. That is a much more extreme position than the NICE committee which only downgraded the quality of...

There is also a longer page on treatments which can be viewed here: https://www.gesundheitsinformation.de/behandlung-von-mecfs.html It presents pacing, CBT, physical activation and sleep hygiëne as treatment options but all with little evidence. on GET they write: "A targeted, gradual...

Here's a comparison of the summary section on treatment in the draft versus the final report. The bolding is mine because it seems that this is an important sentence that was removed. Before: ME/CFS may have different causes in different people. In addition, the severity and type of symptoms...

Skimmed through the report. It seems that they toned down their statements on GET and CBT and changed their prevalence estimates but that not much else has changed. They previously only relied on the 0.1% prevalence estimate of the Nacul et al. 2011 study because that is the only one that...

Does anyone know to which study they are referring here on page 7 of the PDF, in the introduction: "Eine erste Studie zur Verbesserung der Versorgung mit einem speziell auf ME/CFS angepassten Rehabilitionskonzept ist in Deutschland bereits gestartet."

This seems to be the link to the final report: https://www.iqwig.de/download/n21-01_me-cfs-aktueller-kenntnisstand_abschlussbericht_v1-0.pdf

This looks a bit similar to the info the CDC provides, especially the part on GET and CBT. Not great but not bad either, probably a significant improvement from having no info or guideline at all?

I was wondering the same thing. I'm quite skeptical that there are good quality tools to assess services.

Thanks for sharing.

His website still states: "I offer consulting services. These are distinct from medical services, and I do not offer medical services. I have no financial interest in connecting people with any specific doctors." https://www.explorewithjeff.com/

Not sure if it is a good idea to let patients decide which topic of ME/CFS studies they would like to participate in. This will only increase selection bias and provides little benefit. Patients might think: "I don't have symptom X so I'm not interested in participating in those studies" etc.

I think this is a central question. Lifelines has previously published on CFS but this was based on self-report which is probably not very reliable. I would assume that the funding allocated by ZonMW was meant to do a full clinical examination on these patients to have more reliable ME/CFS...

No, haven't seen any specific target number or details about this project. Would be interesting to learn more about it.

Thanks. It's a rather short text apparently. I've pasted an English translation using DeepL below. Regarding ME/CFS: Recognition, medical care & protection of affected persons as well as research funding The Federal Government, and in particular the Federal Minister of Social Affairs, Health...

Yes the difference in income and education as risk factor are interesting. Compared to hospitalized patients, a higher income decreased the risk of ME/CFS while a higher educational attainment increased the risk.