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Exactly i.e. "NICE are supposed to make use of the people who know how to do it, surely". OK if it's difficult to get hold of the experts, understandable as they are treating patients, then an idea would be to use a screening tool - but not when it doesn't work [GRADE]! I have to say that you...

Re "IDO inhibition", from memory Robert Phair* mentioned that there was a trial of a drug which inhibited IDO1 i.e. in people who were terminally ill with cancer. The patients refused to continue the treatment because of the fatigue it caused. *One of the OMF Community Symposiums I suppose.

Thank you very much for your insight @Snow Leopard.

Yip interesting to know if this is relevant to ME or could be. @Jonathan Edwards post re immune dysregulation(?) here, came to mind: https://www.s4me.info/threads/me-cfs-funding-worsens-as-nih-maintains-status-quo.12949/page-2#post-228586 Neil McGregor gave a talk, at an OMF Community...

It seems like the best you could do is arrive at some sort of basic rules re what is acceptable/unacceptable e.g. @Simon M had a basic (but sound) rule "subjective outcomes only acceptable in blinded trials" "objective trials acceptable in unblinded trials". However, I'm not sure you could...

I wonder if they even used a good reference method for B12 deficiency (i.e. methyl malonic acid). Also, did they try the technique @Jonathan Edwards has been highlighting i.e. dose response curve [adding B12 and seeing if it improves symptoms]?

Pray what are these "specialist clinics were genuinely excellent" dispensing and has it been validated [and not by GRADE]? Or is it just the fine Doctors who lead them?

I think the problem with GRADE is that it's not that easy to define the dependent variables i.e. measure X, Y, Z --- and if the study is flawed then the number is above "n" --- bit like the meaning of life the universe and everything 42! Theoretically you should be able to produce the model but...

They might have wanted to show they had looked at all of the crap - even if you're correct i.e. they should have said it's crap and here's why--- would have raised a few hackles --- disgruntled X---

Well to be fair, if you were in NICE, and you had to answer for the mess, then it would be reasonable to ask for the money to do the job properly.

I used to drink wine and relied on XYZ--- to guide my (cheap) choices NICE should be able to evaluate evidence and, as @Jonathan Edwards points out, the reasons why X was adopted should be set out --- transparent. NICE shouldn't need Cochrane particularly since it's a pile of poo - and NICE...

As I've pointed out before I haven't followed this carefully. Let's say @Jonathan Edwards has done a study in rheumatoid arthritis using rituximab. Patients were selected using objective measures (e.g. antibody levels and scans), their level of disability was assessed using an objective...

Yes the "beauty" of what they do is note the remarkable consistency of studies which do not have objective outcome measures, and are unblinded, -- they then ignore the question is this the Hawthorne effect [https://en.wikipedia.org/wiki/Hawthorne_effect]. If you show an interest in people they...

Yea surely a medical Doctor who is unsure of a diagnosis can set out their views and ask a colleague(s) for their views? Black boxes (like GRADE) are rightly concerning - the fact that this one requires you to give a +ve value to data that should be discarded, means that it isn't fit for...

It may not be that different from the Hawthorne effect https://en.wikipedia.org/wiki/Hawthorne_effect indeed @Jonathan Edwards advice that he showed empathy to his patients and tried to support them --- OK Jonathan was developing treatments that worked rather than just being interested!

I assume he's a medical Doctor in which case he's disowned his training. If 100 people get I'll and 90 recover - the reasons the others don't might be genetic, --- If one person turned up at his clinic and announced their recovery was the "power of the Lord Jesus" [I'm in Northern Ireland]...

If the "retired believers" are those who spent their "professional/work" life in this then they presumably have a vested interested in believing it had a purpose.

Never used a chiropractor but they have a reputation - not a validated part of medicine - very lucrative ---- seems like there's a theme here ---- on (his) upside I guess he's well paid even if those on the other side of the equation (us) don't benefit from his services!

I live in Northern Ireland [UK devolved administration] and vaguely recall having a brief exchange with the Health Committee i.e. re NICE guidance. I wasn't impressed that they referred to NICE guidance; I pointed out they didn't have to go with it - since health is a devolved matter. The...

The cost of going to Court alone should force a rethink - at a wild guess I can't imagine it would be less than £100K. Not sure there's anyone in the mix who would put up the money. An insurance company should have "good" retained legal advisors and I guess they'd be advising not to go there -...