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Thanks very much to Millions Missing France for their support, and for supplying a French translation of the petition content

Thank you to the World ME Alliance for undertaking to share the link to the petition with their member organisations. Thank you to Millions Missing Canada for supporting the petition.

Less than a day after starting the petition, we have over 1800 signatures, and hundreds of comments, many of them from people with ME/CFS and Long Covid who have been harmed by medical advice that they should exercise their way to recovery. I know that exercise can harm, of course, but reading...

The Science for ME forum started a petition on 4 September: Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review on Change.org The link is here: https://chng.it/zTZ7vX9Czd It is part of the forum's campaign to have the 2019 Cochrane Exercise Therapy for CFS review withdrawn, and...

I've just skimmed the rest - a lot is covered. I think it's a decent review, a handy resource for researchers.

I think this (tissue banks) might be something post-infection disease advocates need to work on.

I agree with you both. When I saw the title, I was hoping for a biomedical study that might have found something, so was disappointed to see it's just a review. But, I guess it's legitimate to read some papers and make some conclusions, including related to what needs to be studied next, and...

I found this recent paper useful in understanding these recent medicines for migraine: Calcitonin Gene-Related Peptide Receptor, 2023, Rashid and Manghi It's interesting to think how the raised blood CGRP in people prone to migraines might also be related to orthostatic intolerance and PEM...

Sounds like good news German Government announces new funding guidelines for ME/CFS

Abstract Lyme disease is the most common vector-borne disease in North America and Europe. The clinical manifestations of Lyme disease vary based on the genospecies of the infecting Borrelia burgdorferi spirochete, but the microbial genetic elements underlying these associations are not known...

With the benefit of a night's sleep, they seem to be saying this, for example for central venous pressure Supine central venous pressure - 8.6 cm H2O when first supine, increasing to a maximum of 12.6 cm H2O during the headdown tilt, but then returning to baseline over the 20 hours spent in the...

There's a paywall, so I can't check. I find the results given in the abstract a bit unclear. What parameters remained altered after the 20 hours of bedrest, and how long did they stay altered?

I don't think there is much in the way of a benefit beyond a short term placebo effect and possibly some natural improvement with time. Figure 2a shows the mean SF36-Physical function scores for the 10 participants at baseline, and the three following months. Figure 2b shows individual SF-36...

As they did for the pre-Covid studies, they selected people with ME/CFS and elevated ADRB2 autoantibodies. So, this is a subset of people with post-Covid ME/CFS. 10 participants This regime is similar to that used for the two pre-Covid studies. Those studies also used 5 IA treatments...

Long version Plain language version Seems like some result inflation going on here. And the finding that aromatherapy, massage and acupressure relieve fatigue surely should be casting doubt on all of the studies with similar methodologies.

So, they note they previously conducted a preliminary study in people with ME/CFS, and they say that seven out of ten of the patients responded rapidly - here are references 10 and 11: Here's the forum thread for Ref 11: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Efficacy of Repeat...

Results Levels of IgG and of autoantibodies decreased during the treatment period. Regarding IA1- 2018 and the long lasting improvements - only some of the ten patients seemed to improve in the short term. Two years later, the status of 5 'responders' was that, compared to the baseline before...

Participant selection The 5 participants were regarded as responders to a previous trial of the therapy (IA1 in 2018). And all of the participants had increased B2AR-ABs. So, this is not a random sample. That's ok, but something to keep in mind. Treatment The treatment in IA1-2018 was 5...

Reading those reviews of Paul Jenkins, I do feel a little bit of sympathy for any doctor specialising in ME/CFS. A lot of patients expect to be helped, specially if they are seeing the doctor privately, and so are very disappointed if all they get is a diagnosis. That will be especially true...