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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...

Well yes, and even then 'conceivably' is doing a lot of heavy lifting. As @rvallee would say, the giant spaghetti monster in the sky is conceivable, it doesn't mean it is likely. As Nightsong said the Toussaint paper suggested the standard error of measurement was 2.3, which seemed to be...

Of the 354, 176 were assigned to usual care and 178 to the intervention 135 assigned to usual care made it to 52 weeks; 144 in the intervention made it to 52 weeks. The numbers used in the Intention to Treat Analysis were those still present at 52 weeks, so did not include people who withdrew...

7837 people identified from GP records 891 excluded or not sent a participation pack - mostly due to the GP saying they aren't suitable e.g. because their symptoms probably are due to a real disease, probably also some GPs would know some patients would not be receptive 6946 sent the...

It looks as though harms were reported by participants, but I assume that if the participants stopped participating and weren't contactable, then the harm wouldn't be reported. There is no indication that medical records were checked during that following year or that there was any feedback from...

Randomisation; masking A big deal is made of randomised allocation of people to the treatments. But that is rather insignificant when the participants knew whether they were allocated to the active treatment or 'nothing'. Just noting that quote about some interviews of participants they did -...

Diagnosis See the post upthread for the list of questions in the PHQ-15. I note that women have to answer an additional question about periods, and I think most menstruating women would answer at least 'bothered a little' about period symptoms. So, the PHG-15 and the diagnosis approach makes...

Introduction What nonsense - that a third of referrals from GPs to specialists is due to functional disorders and physical symptoms disproportionate to detectable physical disease. And then they say the quote above, about multiple physical symptoms, which actually has nothing to do with the...