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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...

The problem is the quantity of replies seems to prove the point to those people who are unable or unwilling to look at the details.

I agree. If there is a plan, I think the goal is to influence Cochrane's editors. Basically they're trying to suggest that it is not in Cochrane's interests to be seen changing their mind towards a view put forth by online activists.

Which illness is likely to have the most grant applications? Illness A: $100 million of funding with an above average success rate. Illness B: $5 million of funding with a below average success rate. Seriously, ask any research group how much time/money/effort is required to write a research...

What is "clinically important" is qualitative, it cannot be defined by some arbitrary statistical procedure and most importantly, it needs to be defined by patients, rather than defining it as what is most convenient to researchers.

Yes, Sharpe has committed two fallacies - first, the red herring approach, instead of countering the claims about how the data and methodology fail to meet the quality standards that would be required in other fields, he instead says it's all about patient beliefs instead. The second is that...

The problem for them is that we have seen the emails of the former editor - we can use that to show that complaints about methodology are quite serious.

I've heard of similar cases in Australia. 1/1000 chance of cerebral palsy due to injuries during birth is far too high to be acceptable in my opinion.