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Yes. But I think it needs to be a cluster of recent cases. With old cases, records are lost, people involved have died and memories have faded... And you aren't just up against a pathogen without a public relations budget and a legal team, your opposition is a wealthy agrichemical company...

That's an interesting thought. There are other factors that might influence base line heart rate - for example, the effort of getting to the clinic for those people disabled by their symptoms might result in a much higher baseline heart rate than normal, making it harder to demonstrate an...

Same. I very much hope this study isn't paid for by the Pycnogenol producers (Horphag Research) with nod and a wink, and a study confirming how wonderful pycnogenol is produced in due course. The study design seems good, so it would probably take either outright fraud or at least some obvious...

Public consultation on New Zealand's system for making complaints about health care. Submissions close 31 Jul 2024 "We are reviewing the Code of Health and Disability Service Consumers’ Rights (the Code) and the Health and Disability Commissioner Act (the Act). You can have your say in our...

Effects of Pycnogenol® in people with post-COVID-19 condition (PYCNOVID): study protocol for a single-center, placebo controlled, quadruple-blind, RCT Protocol for a treatment study, from an institute at Zurich University. They might possibly be a capable partner for other studies and trials...

Looks like a credible organisation, with a commitment to doing and teaching good research methodology. They have a track record in a lot of research related to chronic conditions: https://www.ebpi.uzh.ch/en/translational_research/chronic_conditions_health.html They appear to run an MS...

Swiss study, no declaration of conflicts of interest, which is surprising given the proprietary product being tested. The study plan looks good - lots of blinding and both objective and subjective outcomes. Some of the measures will be interesting to see, even just in the placebo group. I...

I think anyone with a curious outlook and a life-limiting unexplained chronic disease will think about all sorts of possible factors that might have caused them to become unwell. Certainly I have, and some of them I have put in a 'maybe' box and every now and then I try pulling one out (e.g...

From the link above "Associate Professor Erin Howden" The study sounds great, very much needed, and it's not surprising someone with a background in exercise physiology is doing it. AP Howden sounds well qualified to do the study. The fact that ME/CFS is mentioned might mean that they will...

As much as I support the committee's view that the NIH could usefully be reformed, I found this description of what is wrong with RECOVER rather odd. Epidemiological work, setting up registries and so on - that all seems fine to me. Actually, it was leaping into clinical trials of things like...

These authors have been involved in other relevant studies. A prospective 1-year study of postural tachycardia and the relationship to non-postural versus orthostatic symptoms. The Orthostatic Discriminant and Severity Scale (ODSS): an assessment of orthostatic intolerance. Higher postural...

Thanks to @MECFS Skeptic for posting about this paper on another thread.

https://www.autonomicneuroscience.com/article/S1566-0702(18)30298-4/abstract not open access Short Communication - Autonomic Neuroscience The autonomic reflex screen (ARS) has been established as an important clinical tool in the evaluation and diagnosis of autonomic disorders ( Low, 2003 )...

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.