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Do they realise the GET study they are citing (PACE trial) had double the amount of adverse effects in GET compared to control and that was with a sample that didn’t require PEM

(Citing the PACE trial and other GET studies) ?? How can they ask for people who fit the CCC but exclude PEM (PESE). Or does “preexisting” here mean PESE before the covid infection? As far as I can tell, no mention of people being possibly too severe to participate, which isn’t a good sign.

Yes. Don’t know where but it will be available.

hahhahahah brilliant

Thank you for the answer. Maybe i am getting a knee-jerk reaction against CFS and CFS/ME because I associate these terms with research and people who have continually downplayed and psychologised the illness. Personally fatigue (not including brain fog and muscles not responding to input which...

As the title suggests I’m looking for resources on why the Name “CFS” is problematic and “ME” or “ME/CFS” is recommended. Specifically I’m in contact with multiple people and communities that use the terminology “CFS” or “CFS/ME” and I would like to share with them a convincing document or...

Swiss govt long covid advisory group not showing up with no explanation to meetings with swiss long covid organisations.

So refreshing too see they have authors from many patient organisations.

I don’t know unfortunately. Looking at the author list it seems majoritarily Austrian with a couple of Swiss and Germans in too. In the case of Switzerland, we do not have national guidelines for ME/CFS (nor is it even a recognised condition) so I don’t know if this could lead to change in that...

Really impressed by this piece. Given it’s published in a Viennese journal, I’m suspicious WE&ME have something to do with it. Hope this will lead to some change :)

Some translated quotes: In the distinction from other diseases, the leading symptom of ME/CFS, post-exertional malaise (PEM), is of decisive importance. It is absolutely necessary for the diagnosis [6] … Secondary - mainly due to the lack and/or incorrect medical care, stigmatization, social...

Glad to hear it is going so well!

Axios Article: https://archive.ph/2024.05.14-183609/https://www.axios.com/pro/health-care-policy/2024/05/14/senators-push-long-covid-research-boost A group of Democratic senators backed by patient advocacy groups is pushing for over $1 billion in new spending for long COVID research in the next...

Couldn’t find any on s4me although it does seem like a very basic question so you are probably right. I thought it would be interesting to see with a sample that has ME (as opposed to Fukuda CFS).

Post-covid, I think the general estimate if you very roughly put together a lot of studies and surveys is around 1 in 100 people. I think pre covid it was more like 1 in 200. Those are very rough estimates and more like an order of magnitude estimate than anything precise. That gives you about...

I’m curious.

I would guess that biomarker is something unique to the disease that consistently differentiates between that disease and healthy people/people with other diseases. A biological abnormality might be more of an “abnormality” found on “average” in patients, ie. the average patient has a larger...

I don’t personally understand this well myself, but I think it’s important to distinguish between a biomarker and biological abnormalities. Because as far as I know we have consistent findings of a couple of biological abnormalities, such as in T-cells.

More research funding will surely get us more data that we crucially need. And the rise of statistical analysis using more sophisticated regression or other machine learning techniques will help find these kinds of abnormalities. However, as this thread discusses, I would be concerned such...

Out of curiosity, how close can you come to proving a physical symptom has a psychological cause. Is there ever a case you can be 100% certain about this?