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Yes, it does. Thanks for finding the paper @ME/CFS Skeptic. Can anyone see how many people were in the samples? I'll make a thread for that paper as it seems important. Thread here: Normal versus abnormal: What normative data tells us about the utility of heart rate in postural tachycardia...

The psychosomatic people continue putting out the propaganda, here in French, suggesting all physicians should be trained in managing 'this condition'. Treatments are CBT, graded activity and a 'trustworthy relationship' between patient and physician: Psychocorporal approach to functional...

They are like a broken record. How is this science? It seems more like propaganda.

On shock index I think I've shared this before - some of my BP and heart rate and derived measures when lying down in the morning, and then standing up for a few minutes. This is from my second year of illness. I was still fit and active, not overweight. The day with a shock index of 1.2...

Yes, and even then, my impression from what the OP said in the latest posts was that they are not recovered. That's not dismissing the idea of PEG-interferon lambda potentially being of use - perhaps the quality of what was used was not good, perhaps the dosage wasn't right... It's just that...

Posts about orthostatic intolerance have been moved to Orthostatic Intolerance in PwME (POTS?/NMH?) as they are off-topic for this thread.

It looks as though there was a flurry of excitement about it on PR a few years ago, and some people tried it. But there doesn't seem to have been amazing recoveries. There is talk of bad batches of the PEG-Interferon lambda, and ideas about feeling worse being proof that the treatment is working.

The forum thread for this paper is here: Variants in the Kallikrein Gene Family and Hypermobile Ehlers-Danlos Syndrome, 2024, Gensemer et al

Yes. Except of course when there are. Ectopic pregnancy, stroke.... If these people were in the 'all these symptoms, they are just your brain being a bit over-sensitive, dear, don't worry so much' group, imagine how much harder it was for them to get timely treatment. 'one urinary tract...

My measurements over months suggested that I did not have POT every day. Heart rate on standing was always tending towards 30 beats per minute, but it was not over 30 beats per minute every day, or at all times of the day. As I've said elsewhere, increase in heart rate on standing correlated...

Yes, that looks right. There are different versions of the PGIC. I don't understand how any scientist could look at the version these authors used (the version above) that so obviously minimises declining health and any harm from the intervention and has vague, difficult to differentiate...

Thanks Lucibee. It looks as though they have completely changed the way the PGIC is scored, as well as using two different methods of collecting scores. And even then, the intervention doesn't come out well. Bear with me, it's confusing, and I hope I haven't confused myself. But, if I haven't...

yes, sorry if it wasn't clear. Improved relative to the outcome in the 'do nothing' group.

Prompted by the above note on another thread: Mycoplasma is one of the (many) possibilities I have tossed around to try to explain what caused me and my children to get ME/CFS. At the time, my husband had 'walking pneumonia' due to mycoplasma. But, my children and I had a gastrointestinal...

Well, when I learned about POT(S), in the second year of my and my children's illness, I measured it. My son, who it turns out had persisting ME/CFS, always had an increase of over 40 beats per minute on standing, although I did not make that many measurements. I tracked my morning increase in...

Incredible, a paper on 'we made a website, and look how we included the patients in the work, and how grateful they were'. Stay tuned for their next paper 'Participatory design of a webinar, in which we allowed some patients to speak'. The paper is just the latest in an ongoing series of...

Thanks very much @Midnattsol - that list of interventions ... so much time and effort wasted, and it continues Here's the detail on PICO for those, like me, not familiar with it: PICO is a mnemomic device used to identify and define the scope of your research question. P is for Patient...

I'm a bit late to this, but the Solve paper is about getting a home for infection-associated chronic conditions. Of course Long covid should be focussed on - it is new and is having big impact. It's a reason for change. To a lesser extent, Lyme disease is spreading over the US - again, that's...

Results There were people who didn't attend the initial session or stopped attending the sessions, and that will probably have affected the results, but the rates of participation (for the 4 sessions) aren't too bad. No statistically significant difference at 13 weeks or 26 weeks. Table 2...

I think, just assuming a normal distribution with that mean and that 95% confidence interval, that there is a 13% chance that the true mean is the supposed clinically important difference of -2.3 or more. Which makes sense if you look at the reported 95% confidence interval of -2.67 to -0.97...