I think a balance should be struck between skepticism, which is the essence of scientific rigour, and cynicism which can hold back scientific progress.
We should be skeptical of this paper. It is an n=10 uncontrolled, open label trial conducted by a conflicted person so we cannot be certain of...
I was reading the WASF3 paper again and I wondered if PCr recovery time had been measured in ME/CFS before. While the paper points to one paper (Chaudhuri and Behan 2004) that identified delayed PCr recovery in ME/CFS patients, AI identified (and I verified) 3 papers where PCr recovery in CFS...
I'm not sure I understand how this could be. The paper itself quite clearly describes sequence A as those who received the treatment first, placebo second. And the supplementary materials describes it as "sequence A". If they changed the definition without explaining it, it would be the worst...
Haha, well spotted. I missed that.
It's blinded to the patients, but surely even patients would realise the clear solution being fed to them isn't blood. Which means it wasn't blinded at all.
I wonder why the FDA gave them fast track status.
I did similar analysis to ME/CFS Skeptic because the charts in the article are very difficult to read. In short, I think the treatment had a very noticeable effect in Cohort A and basically no effect in Cohort B, averaging out to a statistically significant treatment effect.
Here is FACIT-FS...
This post is about a press release in 2024. The study is now published in 2026.
See post #7
A large company specialising in umbilical cord blood has conducted a successful phase 2a trial in Long Covid patients (20 LC patients, 10 controls). The UCB contains Haemopoietic Progenitor Cells (which...
I personally have succeeded in my income protection insurance for ME/CFS. My assessor implied they get a lot of "CFS" cases. They even have a special form for fatigue disorders. When I applied, they asked "do you have legal entitlement for compensation for anyone". I ticked no (I didn't think so...
I don't think causation is impossible to prove, I just think its risky. We don't need to prove that exercise causes harm to a scientific/medical standard. The civil standard of proof is the balance of probabilities - we just need to prove its more likely than not that exercise causes harm. I...
I haven't done any research into past ME/CFS negligence claims, but I think there are two key issues with many cases.
The first is standard of care. Would a reasonable doctor in the position of your doctor have prescribed GET? I imagine that, prior to the 2018 NICE report, a court would find a...
@Manuel, thank you for this paper. I think it draws together many threads. I had a question about the HLA genes though.
You point out that HLA genes are known to be correlated with ME/CFS:
You then talk about HLA-DR2 and paint a compelling picture of how it can cause CD4 overreaction and CD8...
They monitored the mice for 12 weeks (iirc) and stopped after that. The mice had LC symptoms over that whole period, but they did seem to improve over that period.
I was quite excited when I saw this paper because if it is correct it would be a big step towards understanding the cause of LC (and ME/CFS). They identified groups of patients classified by biomarkers and linked them to symptomology (as expressed in mice).
Unfortunately, I have concluded they...
Reduced levels of oestrogen receptor β mRNA in Swedish patients with chronic fatigue syndrome
Hanna Gräns, Maria Nilsson, Karin Dahlman‐Wright, and Birgitta Evengård
J Clin Pathol. 2007 Feb; 60(2): 195–198. doi: 10.1136/jcp.2005.035956
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1860629/
My...
I'm not sure to what extent likes will impact the working group's report, but you can still like ideas and comment on them. This may be a good way to amplify the signal for good ideas - but only if you have the energy to engage with the system. You can like an idea once a day.
I uploaded my idea as a submission but it remains pending approval more than 24 hours later. Lots of other ideas were approved in the interim, so I'm being censored. I suspect this is because of my paragraph naming Wallit. Disgusting that they won't publish sensibly worded criticism of them.
I...
I wrote up a draft submission, which I plan to upload tomorrow. I'd appreciate any comments if anyone has any.
Dear NIH,
Thank you for the opportunity to provide feedback on the ME/CFS research priorities. The patient community appreciates the renewed efforts the NIH has placed into ME/CFS...
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