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Thanks, @Dx Revision Watch As ever, I'm unable to read/follow everything you write but I am hugely appreciative of everything you're doing for the benefit of patients. Even more so as I realise you are now retired. Thank you, from me and I suspect, everyone else here as well.

Overall, this looks like a really important study because it's a decent size and includes the ideal comparison — not with healthy controls but with those who have other types of unexplained fatigue. Plus, the broad findings are replicated in its female-only sister study. And thanks for all the...

Iatrogenic is a great word. It refers to harm caused by medical examination or treatment, which seems very appropriate to the BPS approach.

That would make sense if this was an illness where really bad cases were properly investigated – instead of being told they were too ill to be seen. It was interesting that in the case of the persistent dengue fever Nath quoted, even the specialist clinical team at Bethesda couldn't find it...

this comes back to the point that I was trying to make here. You are assuming that the chronic infections we know about amount to ALL chronic infections so ME/CFS has to look like them (though I don't think that's true: even for acute infections, viruses can present in many ways). Nath is...

A lot of people are, quite reasonably, saying, "given what we know about chronic viral infections, is it likely they could explain an illness like ME/CFS?". However, what made the Nature piece so interesting, is that it was looking at chronic viral infections where the virus was undetectable...

Thanks very much for all the responses, this is exactly what I was hoping for when I started the thread. I hope it's clear that I'm only considering this as an interesting possibility, I don't have strong views either way. Medical Microbiology textbook: Chapter 46Persistent Viral Infections...

Quotes from/highlights of the Nature piece on Long Covid, focusing on the possibility of chronic viral infection. ...A cohort of patients will be recruited and followed, and their bodies and biopsies will be scrutinized using a broad assortment of technologies... Is there a viral reservoir...

The possibility of ME/CFS being caused by a chronic viral (or other) infection – for at least some people — has been discussed for a long time. The biggest piece of evidence in favour of t is that infections are very often a trigger for ME/CFS (summary of the evidence here). A similar case has...

I started this thread in part because of a conversation between @Chris Ponting and @Andy about types of onset. I flagged up this thread to Chris, who responded: He also asked this to be included in the study's log of examples of the benefits of researchers engaging with patients. Chris wrote...

That's a good point. What we really need are two questions: — sudden (needs defining) versus gradual onset — specific triggers: infectious and others. Sudden onset and specific triggers are likely to give the most reliable data. I'm not sure how you would investigate triggers of gradual onset...

There is definitely a danger of some recall bias, however, in the case of ME/CFS, I do think we can learn a lot from these studies, for two reasons: 1. There is a proven causal link to CFS after a range of laboratory-proven infections. Dubbo looked at Ross River virus, Q fever and infectious...

Thanks, I really appreciate the information and suggestions. I think it is amazing, though, that we don't have good data on onset type. It might provide powerful clues, as well as a useful tool for some grouping patients in research studies. Maybe those with an infectious onset are...

I am looking for any good data on the different types of onset. Ideally, this should be from a large, representative sample. I'm pretty sure that no such study exists. From memory, I think that the Chronic Fatigue Initiative, CFI, did publish something on this, possibly a paper by Dana March...

yes, there's no full paper but it looks like they're clutching at straws, sadly. Never mind the lack of controls. I also think the device costs around £500 per month to rent (at least that's the price in the US; these devices tend to charge similar rates for the UK). It has recently been...

This is another good sign Dame Anne Johson, the new President of the Academy of Medical Sciences (UK) has made engagement with the public and patients one of her five priorities: It is essential to involve the public in decision-making about research and care so that we can collectively...

I agree with your point! We need to remember that patients are a diverse group with a range of views. Prioritise ME has a process for compiling a top 10 of priorities. It's not about getting an agreement on a single priority. Patients are heavily represented on the working groups and there is...

@Barry @Trish @Starlight @DokaGirl - thanks, glad you liked it. Absolutely, different patients have different priorities. And as I'm sure you saw in the blog, the goal of Prioritise ME is to draw up a list of priorities, which it is doing by making patients part of the process, as well as...

For faster progress in ME/CFS research, funders and researchers need to treat patients as partners, not subjects Publicly funded research aims to benefit patients and the best way to make sure it does is for researchers and funders to partner with patients. This will ensure research...

The data from a GWAS like DecodeME is perfect for testing this as well as many other hypotheses. Ultimately, it is lab and other experimental work that will prove things in or out, but any hypothesis that is rightht for a substantial number of people with mecfs is very likely to have a genetic...