Search results

On TSP1 (thrombospondin-1, THBS1) US: Annual ME/CFS Working Group Meetings from 2020. Stanford/OMF

All that said (re my post), GNAI2 and TSP1 proteins do look to be different (both increased) in some of the LC cohort, compared to the other two cohorts, and so maybe are worth keeping in mind when looking at other 'omic studies.

I like the introduction. I like that there are matched groups of Long Covid, recovered and healthy controls. Group sizes are small though. The symptoms are a bit random. Numbers of the Long Covid group (total 15 people) with the following symptoms: Smell and taste dysfunction 4 Fatigue 4...

Yeah, unfortunately it's a bit questionable. For example: Participant 2 had physical deconditioning, anosmia/ageusia and difficulty concentrating when they gave the sample. But they are categorised as being in the 'asymptomatic' group. Participant 4 only ticked the symptom box for physical...

If anyone is familiar with the technique used to identify the proteins and feels inclined to describe it here, that would be great. They then did a PCA analysis and found that the PCA analysis of the sera divided the participants into two groups, one with mostly participants asymptomatic at the...

Hmm, this study comes across as overly definitive and over-confident in the abstract. There are no recovered controls, so they avoided major clues that might suggest that some of their findings are just noise. As for 'asymptomatic PCC', surely that is an oxymoron?

Thanks @forestglip. Chart 1k confirms what I had calculated: 9/14 fully recovered people were men (64%); 8/21 LC were men (38%). The finding is a bit interesting, but the sample sizes are too small and the definition of LC too loose to say much. Only 5 fully recovered women, and the...

An odd definition of severity, not related to impact on function, only number of symptoms. It doesn't sound as though the control group was well matched on sex. It's possible that what is reported here is just the result of sex differences. Figure 1B is difficult to interpret, but I think the...

I think, given the complexity of many genetic associations with disease, the difficulty isn't in the genetic testing, but in finding someone who can usefully interpret the resulting data. And, even if you do find someone with useful expertise, that expertise probably only covers a small number...

A nice summary, Peter. Other than there appears to have been a decision that staff and Cochrane officers should not (must not?) individually respond to emails and queries about the Larun et al review, that it all needed to be managed centrally. For at least a year we have been hearing that...

It will be worth keeping an eye on how long the RACGP takes to update the citation for the Larun et al review in this clinical guidance supporting the use of exercise. It's still currently linking to the 2019 version.

We have had some success in getting clinical guidance in NZ to refer to the NICE Guidelines. Even then, when authorities want to refer to 'differing views about the best treatment', the Larun et al review gets wheeled out. There are definitely parts of the world where Cochrane is very...

Linking to this resource: Video: How dietitians and the wider MDT can help people with ME/CFS, Helen Baxter of The 25% ME Group

I wonder that too, the timing seems to fit. But I did also wonder if I was being too self-centred, if it wasn't all about us. Maybe Cochrane has a portfolio of festering stuff-ups, not just the ME/CFS one? And, Cochrane have always been about the reviewers, or at least the favoured reviewers...

I think there's an issue with Cochrane being both a journal publisher and a 'provider of 'gold standard' medical advice'. If a review is published and then deemed to be not only not gold standard medical advice but a potential source of harm etc, it can be withdrawn as a Cochrane review, but it...

Another petition update: How a review published in 2019 became a review published in 2024 24 Dec 2024 2019 or 2024? The observant among you will have noticed that we are now calling for the Cochrane 2019/2024 review (rather than the 2019 review) to be withdrawn. The reason for the change is...

Good on you for caring enough to do something @cybergreen. I think though that by nominating alternative disease names, you will limit the number of people who support the petition. If you asked people to agree that CFS is a bad name that should not be used, I think a lot of people would agree...

We've been contemplating the possibility of legal action on another thread and feeling rather pessimistic about that for now. I think complaints based on the Helsinki Declaration and national research standards might get us somewhere in the short term though. When there is an egregiously bad...

That's an interesting video, about 30 minutes. Lots of information on a range of topics.

Thanks to @bicentennial for the heads up about this. Here's a link to the Declaration of Helsinki, published by the World Medical Association https://www.wma.net/policies-post/wma-declaration-of-helsinki/