Preprint Management of Nutritional Failure in People with Severe ME/CFS: Review of the Case for Supplementing NICE Guideline NG206, 2024, Edwards (Qeios)

This.

Many people (including me at one time) criticised PACE and the BPS models by citing evidence of abnormal pathology, and/or by pleading that it’s not psychological or psychiatric. Those arguments were at best irrelevant and at worst counterproductive. The valid arguments which led to NICE and others rejecting GET and PACE-type CBT were necessarily independent of aetiology.

To me, this is a similar situation. I think the paper will be far more persuasive to decision makers for not overstating what is known.

 

Agree. I think Jo's approach is spot on. This should be a stepwise strategy, building from what we know and don't know right now. The biological arguments can be added later, when the data are replicated and/or otherwise looking solid.

Perhaps a bit like Dune's personal shield generators. Fast attacks simply bounce off the BPS paradigm, but "the slow blade penetrates the shield". (Link to OG Dune 84, because Patrick Stewart).

 

I think you might be parsing his statement too closely or literally. Your document was in fact further guidance, from my perspective.

 

I think I meant guideline. I forget but I was under the impression that Charles was suggesting that we need more further guidelines. He certainly gave me that impression when we discussed things earlier in the year.

Edit: I find his message confusing. He suggests that I have added some new comprehensive protocol but I have simply summarised what is already out there. I guess that one or two things have been pulled together but I thought I had made it clear that these were simply my suggestions rather than a protocol. I am not qualified to do that on my own (even if there didn't seem to be anybody else much wanting to contribute to such an exercise).

I guess it is at least useful to have Charles endorsing what I have written.

 

You did not! I searched your paper for that and didn't find it. I do think it was implied.

 

I interpreted the carers' paper to be largely referring to symptom management when they talked about what is known and ways to help patients, not necessarily treating the underlying disease.

 

What was intended to be implied was not really a middle ground, more a level playing field I think!! And a referee with a loud whistle.

 

is that Yiddish?

 

Only slightly.

 

Trial By Error: More Debate About Treatment of Severe ME/CFS

"Last month, Jonathan Edwards, an emeritus professor of medicine at University College London and an advocate for patients with ME/CFS, published a statement on a pre-print server about managing the nutritional needs of patients with severe disease. (I wrote about it here.) A few days ago, a group of parents and carers released an open response to Professor Edwards’ statement, acknowledging his efforts to improve matters but also questioning some aspects—in particular, his argument about how much is or is not known overall regarding care for ME/CFS patients."

https://virology.ws/2024/07/14/trial-by-error-more-debate-about-treatment-of-severe-me-cfs/

 

Great article @dave30th - particularly appreciated the commentary on the BBC article

 

Thanks! I was surprised not to see the standard knee-jerk comment from one of the cabal members, especially in a BBC article. In the past, these people would always be asked to comment on anything related to this. In this piece, Charles Shepherd seems to be presented as the main authority figure available to comment. Big change--or at least it suggests some changes are afoot in how this issue is being viewed by journalists.

 

Just a quick note - Trudie Chalder's name is misspelt as Chalter. @dave30th

 

Thanks! Fixed it. I need a copy-editor and/or proof-reader

 

.. and Wessely as 'Wesseley'

 

Oy!!

 

Is that Yiddish?