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www dot curablehealth.com/podcast/fiona-recovery-story-chronic-fatigue-syndrome I haven't listened to the interview and there is no transcript, so I have only read what was written. From a first glance, it is notable that there is no discussion of whether she is in remission and what she has...

Moderator note: A series of posts has been split from the thread 'Protocol - Persistent symptoms Reduction Intervention - A system change and evaluation PRINCE, 2015 onwards, Chalder Moss-Morris et al' ****** The software/hardware analogy is indeed nonsense and it invokes the same mind-body...

The impact on the satisfaction of human needs in ME & CFS is often worse than the comparison illnesses, hence a deeper examination is needed before forming any conclusions about the degree of causation and 'expected' impact.

Another 2.4 year prospective study. (mean baseline age of entire population was 44.9, 57% women) https://papers.ssrn.com/sol3/papers.cfm?abstract_id=3427300 New onset 0.08%/year, mean age of 48.0. 56% of new cases were women. "Lifetime diagnosis at baseline" was 1.3%. (note this was...

Copied post Another 2.4 year prospective study. (mean baseline age of entire population was 44.9, 57% women) https://papers.ssrn.com/sol3/papers.cfm?abstract_id=3427300 New onset 0.08%/year, mean age of 48.0. 56% of new cases were women. "Lifetime diagnosis at baseline" was 1.3%. (note this...

The study is somewhat superficial in it's exploration of prognostic variables and it is possible the prognostic variables shared between IBS and FM may reflect diagnostic biases. The authors also state "We had no measure of sexual abuse which has been mentioned in previous reports as a...

I just skimmed the transcript as well, neither MS or PH stated anything along those lines on the radio show.

The manuscript is strange, with White simultaneously trying to justify both lumping (CFS with other medically unexplained syndromes, Chronic Fatigue as a broad non-specific diagnosis) as well as splitting CFS patients into subgroups. Yet White and colleagues have published much literature...

I don't know about updates, but this is the old link: https://einnsyn.no/saksmappe?id=http%3A%2F%2Fdata.einnsyn.no%2Fnoark4%2FSaksmappe--983744516--10566--2017

There was a review of medical research in Australia over 10 years ago which suggested funding based on societal disease burden - and it was overwhelmingly rejected. Basically scientists don't like being told what to do, but the argument was that they should be free to focus on "strengths" rather...

It is the "Chronic Pain Acceptance Scale" with 'pain' altered to 'symptoms'. That might be why some of the questions don't make total sense, and why the questions are so loaded. www dot psychologytools.com/assets/files/CPAQ.doc The questions from the first post are from the Cognitive and...

Keeping records of how you answer the questionnaires is smart! It is something I recommend all participants of clinical trials to do - also for your own perspective, to put any changes of your health in perspective, or to make sure you answer the same if your health hasn't changed.

So they have to drug her so that she can cope with the distress that they are causing her? FFS

That's awful, it boggles the mind why people running trials like this seem to lack empathy for their patients...

Note how patients were not asked about: - understandability - relevance to their personal experience - whether they believe change on a particular item is representative of their illness improving - comparability/linearity/weighting of measures eg. is one point of change on one question equal to...

What do you mean by that? There is no evidence that antibiotic-refractory Lyme arthritis is due to chronic borreliosis, but instead some other chronic consequence of the initial infection.

It's funny how the 'expert' in that article is a historian, not a medical scientist... I don't believe in "chronic lyme", but patients do have a severe chronic illness that could well have been triggered by an initial infection of borreliosis. (interestingly enough, the word borreliosis or...

Exactly. The NIH has a mandate to consider equity, but as far as I know, the MRC does not and the NHMRC has formally rejected equity.

The first step is acknowledging it... Because only the very highest quality applicants who think they have a very high chance of success even bother. If more people applied, the funding rate would go down. That is one of the points I'm trying to make.

No, I agree that there is a connection between public and private funding - pilot studies are overwhelmingly privately funded in fields that don't have an abundance of funding. (Pilot studies are funded using "creative grant accounting" by borrowing funding from other grants in fields where...