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team from La Trobe University, Australia, including @DMissa sounds promising

No, I wasn't claiming individual special circumstances. I think anyone can send feedback in.

Thanks JTJ I've read the threads and quoted threads for as long as I could. The review looks truly awful, in a multitude of ways. Here's some of the content for people not on twitter.

I got this very nice reply to my suggestion that they extend the deadline on the process: So, further feedback can be sent to MECFSResearchRoadmap@ninds.nih.gov over the next week or so.

Thanks to the people in the ME/CFS community who helped George with the content, including members here.

Jeannette Burmeister's Twitter thread: Take, e.g., this 2013 Walitt opinion paper (links in last tweet, published in Nature Review,) a vile propaganda piece regarding fibromyalgia & myalgic encephalomyelitis: Culture, science and the changing nature of fibromyalgia. 2/ My focus here is mainly...

This is quite a complicated study, so it takes a bit of understanding. I'm not quite there yet. Post-Covid hospitalised older cohort I think the main problem with this finding, as with so many others to do with brain function is that the people with a disease state are having an altogether...

Fantastic thoughts @Ravn I too have been wondering if this might be something World ME Alliance might want to run with. This is a nice idea - it maybe wouldn't need to be part of the first work, but a regularly updated recommended toolkit would be a great way to direct researchers towards...

Oh, that reminds me, a related issue is storage of the data and reuse for other studies. There should not be an assumption that the participant is okay about their samples or their data being used in other studies, without them giving express permission. I've seen researchers wanting to...

I don't think you have heard what people have been saying - there has been plenty of bad non-BPS research done on ME/CFS, and that harms us too. I don't think that asking that researchers only draw conclusions that are warranted by their data is unreasonable, nor is it only targeting BPS...

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 samples to; patient registries are deciding who to give data to. Patient charities are funding research and are promoting studies to their members...

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 key is education of people with ME/CFS. I don't think AfME or any major UK ME/CFS charity would allow another PACE. It's important that we get people...

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 Celiac disease) Useful, thanks ME/CFS Skeptic

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 short and lacking in monitoring to identify harm.

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 the only organisation able to endorse research. However, its influence has waned, and there are other organisations around which mostly seem 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 Parker to endorse their study and you'd probably have to allow that in a national call for applications for funding. But, when it came to assessing...

I think you underestimate the power of good communication between researchers and patient organisations, in both directions. If it is required that the research funded by a private Research Foundation like the Mason Foundation or a government funding opportunity must have the support of a...

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 of each on the participants and the wider ME/CFS community. For sure it is a bad paper, although to find it I just searched our BPS research forum...