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The comorbidity question is particularly difficult and I'm feeling a bit bad about my pragmatic approach here. Which is that - for now - it's detrimental to ME patients and organisations to be too closely associated with any of the contested "acronym syndromes". This isn't intended to throw...

A carefully moderated/facilitated peer support forum/group is a beautiful thing (that's why we're all here!) but things can go very wrong if you don't have the resources and the right people to see to it going right. Stating the organisation doesn't endorse anything in particular is not enough...

The more I see of placebo effects and attribution bias the less I think those stories and studies have to offer. Recovery stories claiming a causal link between this or that treatment or attitude are doing more harm than good. There's a case for carefully vetted case stories for newspaper...

Dilemma all right. Exacerbated by the fact that many patient organisations have limited resources so need to make some hard choices. Ideally different organisations make different but complementary choices so we all can piggyback off each other a bit. The worst scenario would be if everybody is...

A very mixed bag. Documenting the lived experience of severe patients is valuable and many of the issues raised by the 5 patients deserve to be documented on the public record. However, I think I would have preferred to simply read the 5 accounts as they were given. I suspect all that...

Some extracts from the interview have now been posted here: https://www.rnz.co.nz/national/programmes/ninetonoon/audio/2018782096/dr-rosamund-vallings-on-covid-long-haulers-and-cfs-me

Way out of my depth here. If somebody could translate into plain English? What to make of this: significant differences in viral loads between groups? The graphs don't help, I can't make head nor tail of of Fig2a-c. Is the viral load higher in patients or in controls? Either way, what I recall...

:rofl: Hadn't thought of that. Would save the fine, too. I can't get myself to the library these days but if any other bookworms happen to get a bit shoddy with their shelving, they didn't get the idea here.:bookworm::D

So, trying to summarise what I've learned here so far. A true low reading is due to low oxygen in the blood. This is obviously important in the context of Covid lung damage. A false low readings could be due to low haemoglobin and maybe other things making red blood cells less red. It's...

Can't comment on the new version but back when I could still read books I got an older edition out of the library. Meh... Just looked up the library catalogue: 2012 edition, and 2 out of 3 copies out on loan, a fourth is held at the reading room. There's also the 2015 guide for young people...

They looked at ME patients both before and after exercise but for the controls there only seems to be one time point? Also, the numbers of dots in each figure are different. Missing data? Not very clear what sort of cohort this was. They only say: Reference 28 goes to a study about children...

Fukuda would be fine if they made sure it was Fukuda with PEM. Which I'm hoping Dr Levine would have done. But unfortunately not made clear in the paper. Can anyone explain what the significance of protein ratios is and how they relate to "biological relevance"?

I don't know enough to judge how good this hypothesis is but testing it asap and thoroughly does seem worthwhile if only because we keep getting all these small and inconclusive studies about hormones in ME. So it would be good to have a really good study on this to sort out if this remains an...

If the purpose of the public thread is as a resource for journalists would it be an idea to have several public threads, each on a different, narrow topic - in addition to more free-style members-only content - to make it easier to find relevant content? Some possible topics: experiences with...

Some sort of atypical autoimmune problems may well be going in ME, or in subgroups of ME, but calling them characteristic of ME seems to be overstating the current evidence. As far as I can make out this study starts at step 2 of the above hypothesis, i.e. it asks the question if there is...

Maureen Hanson sums up the whole sorry saga: "The BMJ article from Paul Garner shows the danger of assuming that the course of long COVID will be the same as ME/CFS. One thing that does occur in both illnesses is false attribution of the causes of recovery" [the meme in the tweet is good, too]

This really worries me. Also, a biomarker may not be widely accessible, e.g. if it requires expensive scans or the sort of tests only a few labs in rich countries can do. On the positive side, even such an impractical biomarker could still lead to a better understanding of the pathophysiology...

Yes, there's bound to be significant bias. People with fewer resources, be they financial, social or cognitive ones, simply won't get diagnosed. But I also think patients, including the charities, inadvertently feed this obsession with "high-performing". When we first fall ill we're so shocked...

Yeah, but they didn't specify what sort of pain. The fatigue and headache combo after cognitive exertion is not unknown outside of ME. Plus they didn't say how long the symptoms took to resolve. My guess is they measured soon after the exertion but impossible to tell from the abstract. Guess no...

Has anyone been able to access the full paper? PEM induced by cognitive exertion is underexplored, or should I say it's even more underexplored than PEM induced by physical exertion so research into this is welcome. Unfortunately, based on the abstract alone, it's hard to tell if they're...