Not sure why things like these are published in a scientific journal: 5 authors reflect on the illness trajectory of 2 patients.
They could have just published their ideas and views on a blog or something like that. It would have been more valuable to hear from the patients themselves. Patients...
This question came up during a discussion. Here's how I answered it after only brief thought:
I think a prevalence study (e.g. in Germany) would be useful to get a better overview of severity/disease burden, case definitions, comorbidities (hEDS, POTS, MCAS), prognosis etc. For all these...
Not that I have that much on my bank account, but I wondered what medium-to large scale studies would be most interesting in doing in ME/CFS research.
Many have discussed this on this forum but it is often scattered among different threads and discussions. The James Lind Society helped to set...
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Looks like a useful study.
I suspect the data comes from this master's thesis:
https://www.s4me.info/threads/masters-thesis-can-natural-language-processing-reveal-doctors%E2%80%99-attitudes-toward-specific-medical-conditions-2020-brooke-scoles.15726/
There isn't much in the report except for "we run a specialist service and patients get better with our care." Not much info on what they are doing, no validated outcome measures, no control group etc.
Main findings seem to be:
Out of the included 168 patients, only 14 (8.3%) showed complete recovery. Patients were considered recovered if they "were no longer experiencing PEM for at least 6 months, reported complete remission of their baseline symptoms, and were able to perform their...
So if I understand correctly they found antibodies against herpesviruses to be increased in the saliva (but not so much in the plasma) of ME/CFS patients who had antibodies against sars-cov-2. In ME/CFS patients without increased antibodies against sars-cov-2, there was no marked increase of...
Section 2.3.3.6 on page 179 (page 199 of the PDF) gives info on how they rate evidence. Here's the DeepL translation (my bolding):
A 2.3.3.6 Statements on evidence
For each endpoint, a statement is made about the evidence of the (higher) benefit or (higher) harm. There are 4 possible levels...
On page 157 of the report (177 of the PDF) they seem to use the 2011 review of patient surveys by Tom Kindlon to argue that a lot of patients felt improved after GET and that the reports of harm were not that striking. @Tom Kindlon
The translation reads:
"Furthermore, other interpretations...
So in summary:
There were only two randomised trials on GET used in the review and both had the highest risk of bias possible for all outcomes. They could not have a worse quality rating.
They did not have a control condition: patients in the intervention group received GET + whatever patients...
Yes I very much agree and I think this is worth repeating.
Even if we ignore the high risk of bias and the lack of control condition and only focus on the numbers, the IQWIG's own analysis showed no reliable effect for GET.
They looked at all of the following outcomes:
fatigue
physical...
If I understand correctly, they will publish a brief overview of this report on the website www.gesundheitsinformation.de. This will be information aimed at the general public and interested healthcare workers, similar to what the CDC offers on their website.
A draft of the information that...
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