Search results

Is this the part where we need concrete proposals on how to best spend the money?

Does this work? It seems like a good compound for ME/CFS.

Maybe their job is to ask the study authors questions such as "Did you switch outcomes to obtain a better result?" The answer will of course be "No, we would never do this. We just liked these outcomes better."

What comes next? Does the resolution create an obligation for the EU to now find a way to realize the objectives expressed in it?

Link to the article https://www.europarl.europa.eu/news/en/press-room/20200615IPR81245/me-cfs-meps-call-for-more-funds-for-research-into-complex-illness

Or maybe there is no cure because too many people, be they BPS or enterovirus enthusiasts, cling to incorrect pet theories. The enterovirus ME enthusiasts also seem to have very little concern for anyone with similar health problems that just doesn't meet their narrow definition of true ME...

https://translate.google.com/translate?sl=auto&tl=en&u=https://melivet.com/2020/06/17/avslag-i-trygderetten-pa-feil-grunnlag-1/ @Hilda Bastian if you can please also read this article on how patients are told they must undergo CBT/GET to obtain a disability pension. The argument is that that...

He is technically correct that there is no objective measure of depression etc but seems to have difficulty understanding the very simple argument that there are objective measures of the impact of these illnesses on patients lives which is a good thing because that allows more accurate...

Ramsay seemed to actually have a view of ME that is very similar to the modern view. As infectious or gradual onset illness that could be triggered by a variety of viruses and may be more related to an immune problem.

French doctors say 5-10% of covid-19 patients have persisting symptoms. A person commented in another tweet that in her support group 80% of patients with persisting symptoms are younger women.

I realize this is not a good study but hope better studies will follow. They might have found something important. The comparisons to psychosomatic research can wait until we are in a situation where dozens of poor quality studies are affecting people with false information.

I wanted to clarify what I mean with "all the wrong ideas". The CBT/GET proponents have a model and they selectively acknowledge and report information so that it conforms to their model. They omit other important things, ignore inconsistencies and contradictory evidence, inflate the importance...

I think the main reasons for lack of research is the illness model proposed by CBT/GET proponents. According to this model the chronicity of ME/CFS is due to abnormal thoughts and behaviours of patients, not due to an underlying organic disease. The symptoms experienced by patients would be...

Do you have people that will look for misleading research practices like outcome switching, not reporting outcomes as planned, altering diagostic criteria (and then making claims involving diagnostic criteria) or absurd definitions of recovery? Are these things taken into account? The CBT/GET...

Also important: always ask what is missing. As far as I know, there is no study that has shown that exercise therapy leads to a sustainable increase in daily activity levels of ME/CFS patients.

@rvallee the correct term is pseudoscience. It looks sort of like science but it's actually a belief system.

I'm convinced that during postural changes in ordinary daily life, I can feel the blood redistributing itself. It feels like a weight that shifts downwards through the body, following postural changes with a delay of 1-2 seconds. The sensation this creates in the head is unpleasant and actually...

Yes, I can't like this enough. They are given endless benefit of doubt and privilege. No negative result is ever enough to justify the conclusion that maybe their approach is just not working, no it's all very complicated and too difficult for patients to understand. What is needed are people...

Another reason to reject being very generous with claims of treatment efficacy is that patients are expected and sometimes pressured by society to try a treatment if there's a chance it might help. A review that says there is a chance a treatment might help will be used to pressure patients...

One of the concerns is precisely the proliferation of studies that exploit the lack of reliability of subjective outcomes in an unblinded context to make claims of treatment efficacy. I have just heard the news that another severely ill patient has been forcefully removed from their home. A...