Yes, I expect good researchers would have some useful ideas of things that they would like to see all ME/CFS researchers doing.
Yes. And also, organisations that we do have some control over are already making decisions about research. Biobanks are deciding who to give...
It's a risk of course, that the 'wrong' patients end up in decision-making roles. But I think it's a risk that has to be accepted. I think the...
I assume there's a typo in the abstract - they mean 'little data to confirm that a gluten free diet improves symptoms in patients with CFS'. (not...
Adaptation?
Looks like a helpful contribution that will get the message of caution out to more people. Nice that they recognised that trials are often too...
Yes, it's a problem. The national patient organisation in my country has promoted some odd ideas and I certainly would not have wanted it to be...
Yes, for sure. Some researcher could find some obscure group called 'Recovered ME/CFS patients' that gets their morning teas sponsored by Phil...
I think you underestimate the power of good communication between researchers and patient organisations, in both directions. If it is required...
I agree. Maybe the introduction of such a charter could be a paper giving for each requirement examples of good and bad research, and the impacts...
If only that were true. Cytokines IL1β, IL6, TNFα & serum cortisol may not constitute reliable biomarkers to identify [PASC], 2024, Fleischer,...
All sorts of people are currently deciding; I'm suggesting giving those people some sensible guidelines. For example, Australia's NHMRC was...
Many studies, some good and some bad, have been promoted by patient organisations. DecodeME is a good one. There still has to be screening of...
Yes, it has to have good methodology to provide answers, even if the answers are just 'this isn't different' or 'this doesn't work'. Getting the...
Of course politics is part of getting science done. If we aren't thinking about politics and managing the issues, if we aren't part of the...
Yes, although from Fig 4, it's even worse than that:
I don't think it's necessarily a weakness given their stated desire to reduce the possibility that deconditioning and other consequences of years...
Copying from a post I made elsewhere, this idea arose in forum committee discussions about researchers' responsibilities to act ethically. ..What...
It's an idea that surfaced in a S4ME committee discussion regarding an incident where a researcher funded by patient donations pulled out the...
We've discussed the issue of patient selection before, but I think MEAction are not helping by suggesting the cohort of patients was...
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