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Ebola - incidence of ME/CFS, and comparison with other diseases

Merged thread Every day I come across ideas for studies. And yet, when I come to put together a list, I struggle. So, I thought we could jot down ideas as we think about them or see them, ideally with a link to a thread that discusses them more. We have had a Members Only thread about this...

(Just as an aside, and it probably won't make this wandering thread much more wandering, Vicky Whittemore seems to have been consistently on the side of people with ME/CFS. That was already remarkable and praiseworthy, but is even more so with what we have learned about the NIH recently.)

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Yes, if I had to guess based off the data reported, I'd say about 5 to 10% of people with post-acute infections implicated in ME/CFS* meet ME/CFS criteria after 6 months and 1 to 2% at 2 years. Which actually still seems incredibly high - I struggle to believe that it is that common myself. *...

Well, they do comment on reaction times obliquely, and the reaction times are reported in Table 2. For me, that would be one big and real result of the study. Mean reaction time of the ME/CFS group was about 628 ms, regardless of what they were reacting to in the Attention bias game. Mean...

There isn't good evidence for Abilify or LDN being useful in ME/CFS either - not to discount the reports from patients that they found these drugs helpful. It points to a problem that goes well beyond Dr Tam, and probably applies to every ME/CFS doctor. Doctors want to help, and patients...

I don't think we know that, I suspect that it is not true. It actually looks as though the percentages affected with post-infection ME/CFS in a whole range of diseases is quite similar. Don't forget that it is each infection event that we have to think about - the fact that people are being...

I think each approach answers different questions. A record of functional limitations measures the impact of the disease on someone's life. That's potentially useful for measuring impact changes over time and working out what assistance might be useful. A retrospective survey asking about...

There are two parts to the study: Attention bias and interpretation bias. First, the attention bias: Attention bias Ugh. They really really don't get it, do they. A Visual Probe Task (VPT) 24 pairs of fatigue-related words + neutral words; 24 pairs of activity-related words + neutral words...

Yes, Dr Tam sounds lovely and caring, and I'm not surprised that many in the ME/CFS community are grateful for her. But there is no credible evidence that the Perrin Technique works.

This thread is exactly the right place for discussion about the PROMs study. The Emotional Support Thread is actually just for talking about how the things that happened on this thread affected people, and getting and giving support. Due to a bit of moderator inattention, the Emotional...

Brought to you by the Journal of Health Psychology, Kings College London. (in press) I think this could be a good paper to look at, I suspect the investigators were disappointed that the chronic fatigue people did not look as different from healthy controls as the MS people did. Oh, for...

So, 15,676 people who were diagnosed and treated for Covid-19 at a John Hopkins healthcare system location. Of these, 398 were coded as having PASC or long Covid or post acute-Covid (0.4%). Of the 398 diagnosed with PASC etc, there were 6 people who had a prior diagnosis of a genetic collagen...

I note that Peter Rowe is based at the John Hopkins University School of Medicine and this is a John Hopkins database study

Yeah, but presumably there are processes in some individuals that fix a system that went awry due to some random chance. Why not in everyone? I accept that things happen just by chance, but I reckon there's a risk of replacing psychosomaticism with stochasticism - a sort of the 'god of the...

Well yes, and I guess chance does throw up some really odd coincidences at times. But I'm sure you can understand why I would be looking at stochasticity with a little bit more suspicion, given three family members became ill with ME/CFS at one time. Yes, I think some new investigations of the...

I couldn't think of a better title. Of course there must be some a genetic vulnerabilities - hopefully DecodeME will find something. And of course the onset of ME/CFS seems to have something to do with infections of various pathogens. But, all of us will have had multiple infections before...

It's terrific to have you with us Janna, I too look forward to hearing more from you.