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Moved from the UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion thread. Dear Jonathan Further to the email sent last week, please find attached the draft implementation statement in support of our guidance on the diagnosis and management of myalgic...

Yes, but things are more complicated. The original Larun review was very nearly withdrawn. When David Tovey was editor he made it clear that it should be withdrawn. Moreover, he said that internal review within Cochrane by their own experts had confirmed that. People like Bob, Tom, David Tuller...

All the material is available in the existing Cochrane review versions, some published and some not and in the NICE review, published in detail. Reviews are costly. What possible justification is there for wasting money on repeating searches that could be spent on patient care or useful...

But why follow some set of rules laid out by Mass General? This is real life, real ill people. Real life does not follow rules, nor does science, they follow reality. The time consuming work has been done - collecting all the data and presenting the major parameters in such a way that reviewers...

But that process has already been done. Literature has been searched and data from every study compiled. I was in a position to know the situation having had access to systematic data. The data do not change. Systematic reviewing is a good principle in terms of making sure all available data...

Indeed. Despite the lofty objectives it seems Cochrane has no interest in patients' welfare. We live in a real world, not the world of Jeremy: 'Ad hoc, ad loc and quid pro quo, so little time, so much to know'.

This sounds like nonsense to me. The only thing that will happen to immune cells in the airways is that they will be coughed up as phlegm. There is no 'immune regulation' in what is in effect an inflammatory garbage space outside the body. There might be too many cells in the lung parenchyma...

I see no need to make excuses for these people. As eloquently explained by Peter Barry, the evidence now shows there is too little effect to be useful - we have a positive negative if you like, not just a don't know. The Knoop paper showing that questionnaires do not reflect actual activity...

There is something very bizarre about the secrecy surrounding this process. Normally confidentiality around a policy review would be to protect people who had taken on some sort of official duty to produce an independent report. Cochrane might have seemed vaguely official in the past but it...

Hard to say. My impression has been that this part of the process is designed to ensure that NICE is not accused of irresponsible recommendations that cannot be put into practice. I think there are precedents but maybe only for cases where problems are identified.

The GPs perceived both youths and adults with FSS time consuming, which underlines a need for ways to offload them onto someone else.

Thanks @MEMarge. I had missed this. But maybe whatever impact it might have had is done now. It seems horrendous that the UK RCGP should encourage HANDI but in the end I guess that it cannot displace NICE. HANDI is also a pretty naff name for a serious evidence-based training manual.

So you can now say - well I've done my job, I have prescribed treatment, so now you can go out of the door. And I don't even have to find the dose for a drug.

Yes, well, there you go.

Too right. It sounds barmy to me. If you make stem cells and then differentiate them you are likely to unwind all acquired and epigenetic processes leaving you with cell behaviour just based on the genome. Since people do not have ME at birth that seems unhelpful. Independent people working in...

I thought nootropic might refer to those people who find anything south of Normandy too hot. But it seems: Etymology Coined in 1972 by Dr. Corneliu E. Giurgea, derived from the Ancient Greek words νόος(nóos, “mind”) and τροπέω (tropéō, “to turn”). Equivalent to noos +‎ -tropic. In other words...

Two muscle biopsies is tough. Obtaining a sample worth analysing is a pretty invasive procedure. The scars are likely to be permanent. I would like some sort of reassurance that this is more than just blind hope that something will turn up.

@MEMarge, The article by a UK RCGP person and Glasziou on HANDI is 2019. So presumably GPs have had access to this for a while. When you say 'linked article' which one did you mean? Is there some new reference to HANDI from RCGP? The examples given in the cited article by Simon and Glasziou...

They may have trouble getting anything funded without NICE approval but this looks like a disaster in line with so many others. They want to create the RCIQP (Royal College of Independent Quack Practitioners). Judging by how miserable they sounded in Pulse maybe they should just look for another...

I can't see any information on what the study will do. Is that because it is commercial?