A great example of mixing up cause and association.
Almost certainly, vaccination did not protect against schizophrenia and bipolar disorders, but rather people developing either of those two very disabling conditions were more likely to live lives that made getting a vaccination much more...
The problem is of course that 'I asked some people hanging out on the internet and this is what they told me' doesn't sound great in a PhD writeup. Even though the standard approach of 'I had conversations with a small number of people selected and self-selected with considerable bias and then...
I think the core research being proposed here is useful. If the recruitment is done well and honestly, and there really is the option to not provide one's DNA and data for other studies, then I think it could be fine. It would be a shame to torpedo the study if both the intent and the practice...
I really like ME/CFS Skeptic's draft. Some comments that came to mind:
The UK National Institute for Health and Care Excellence (add UK; singular institute so no 's'; for Health, not of Health)
I don't think it is true that it actively recommends against other exercise programs, it's just that...
crossposted with Yann
The PROMs don't look too bad. But I question why it is necessary to collect anxiety and depression data with specific tools (47 items for children) for a study attempting to find a disease with a genetic biomarker. Why not just include anxiety and depression as line items...
Information from the Trial registry
Study type: screening
Current interventions
All data will be collected via REDCap, which is an online secure and safe platform. Participants will complete online forms to provide the following:
1. Consent to the study
2. Personal details such as gender and...
Yes, if Crawley is not involved, that makes me feel better about this.
But, prospective participants need to be aware that, if they agree, their DNA/DNA information, medical records and answers to the questionnaires are being stored, and they have no control over who has access to that...
https://www.researchgate.net/profile/Esther-Crawley
Publications 2023 to the present:
Graded exercise therapy compared to activity management for paediatric chronic fatigue syndrome/myalgic encephalomyelitis: pragmatic randomized controlled trial 2024 (the exercise therapy was found to not be...
Welcome to the forum Ellen, and thanks very much for your interest in the experiences of young people with ME/CFS.
Can you tell us, how did you come to choose your research project? How big a project is it - is it just a part of your PhD work or is it the main focus? How many people are you...
Looks as if they get your medical records as well as genetic data and the 20 minutes of questionnaires.
It might all be legitimate, but it's just that Crawley was such a key part of MEGA.
I wonder if all the medical records and questionnaire data goes along with the DNA into the Bristol data...
"Start dates may differ between countries and research sites. The research team are responsible for keeping the information up-to-date.
The recruitment start and end dates are as follows:
01 Sep 202230 Sep 2024
Participants are asked to complete one questionnaire and provide a saliva sample via...
There is the example of Long Ebola. I am certainly no expert in the living conditions of the areas where there have been Ebola epidemics, but I suspect life there for many people is different to what it is for many S4ME members. And yet, we see a substantial incidence of ME/CFS-like illness...
Answering my own question, see this:
From bedside to patient: An Ebola survivor's odyssey, 2015
about a US doctor who had Ebola.
He was extremely sick, and had strokes that may of course account for lingering symptoms. He also had proven viral persistence. But, it is also very clear that he...
Interesting to read, although inconsistent approaches in the various studies make the meta-analysis of limited utility.
In the discussion of possible causes, viral persistence and a 'hit and run' phenomenon caused by the immune reaction are included.
It is noted that there are no controls, and...
This is a study with mostly older hospitalised patients with a range of comorbidities and medication regimes. The adverse events are all sorts of things.
The investigators measured lots of metabolites and other molecules.
47 cytokines, chemokine, growth factors
274 human proteins
635...
(I have a soft spot for astragalus. I don't know why. I've boiled up astragalus roots and drunk the tea sometimes, just because. I can't say that I noticed it did anything, good or bad, but if someone gave me an astragalus tonic from a reputable brand, I'd probably drink it. Which is to say, I...
What are they actually saying here? It looks like there was 13.8% less chronic fatigue in the treatment group after one month of treatment. But was the incidence of chronic fatigue in the control group after the treatment 72.2% of what it was before? So 27.8% less chronic fatigue in the control...
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