Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review

Interesting. So like many professions such as human resources have the CIPD to keep them up to date, seeking professional current legal advice on a legal matter etc. The whole thing begins with the correct diagnosis and that depends on education and training and application, a root and branch problem.

I'm beginning to wonder if Cochrane is really now saying that in 2024 the theory behind this illness and the state of knowledge from research has not moved past the Chief Medical Officer's Report 2002 with the addition of the WHO Patient Safety arm from 2004. Safety and efficacy as Helskinki emphasise not efficacy and safety as most research emphasises.

 

My guess is that in general GPs are no longer bothered about Cochrane reviews. They go by NICE and e-learning modules, from RCGP or elsewhere. NICE in a sense superseded Cochrane. Exams for trainees test them on NICE, not Cochrane.

 

This is from 2021 about the relationship between NICE and Cochrane

https://www.cochrane.org/news/interview-cochrane-and-nice-collaborate-improve-health-guidelines

On the NICE website Cochrane is listed under ‘Evidence based resources’ https://www.nice.org.uk/about/what-we-do/evidence-services/journals-and-databases

Under the NHS Evidence toolkit Cochrane library is listed.

This document lists how the NHS evidence toolkit works. Cochrane is mentioned several times. https://nhsevidencetoolkit.net/wp/w...h_Evidence_for_Success_-_A_Practice_Guide.pdf

Edit;
This link is the NHS site of the Evidence toolkit mentioning Cochrane
https://nhsevidencetoolkit.net/resources/the-cochrane-library/

Don’t know how up-to-date this all is.

 

Thanks for this info @Chestnut tree That links Cochrane to the 2007 NICE Guideline. I'll read the practice guide over the next week or so.

 

Did Cochrane specifically review nutrition and malnutrition treatments for M.E ?

Is the conventional and unaccomodating rehab applied across the UK in such cases ( of malnutrition and nutrition ) is it just an extrapolation from the Larun review ?

Does the Larun review, which I have nor read, scrutinise the management options applying rehab to cases of malnutrition ?

Either way, didn't N.I.C.E say something to the Coroners about looking for evidence to think about making amends, putting Cochrane in their sights so did Cochrane offer them the latest review to review ?

Spoiler: I trust they must because...

I trust they must because the sitting and swallowing and feeding rehab unwittingly inflicted upon Miss Boothby O'Neill was a cruel and unusual punishment to which she submitted with deference, and excruciated grace, in good faith ( that she could be helped ) unable to insist - being too dependent - unable to insist that increases in small exertions were eroding her last margin to swallow and digest more ( and more often, and more ingredients ) than she safely could, her innards were failing, not just her muscle stamina, so Simon Wessely led a U-turn after NG206 saying we don't do fixed increases any more

A hospital ( or a special commercial laboratory ) can make up a bespoke medicine without an ingredient that bothers a patient, the hospital ( or GP ) only has to ask on the prescription. Has N.I.C.E asked what was in the feed that upset her gastro-intestinal tract ? Is N.I.C.E preparing to indicate a specific break with convention in cases of M.E when the rehab theory still insists that no such accomodation be made while applying fixable increases instead ?

I can't now trace how the Larun review and its ancient references led to speech and language and nutrition and dietetic "therapy" (.a.k.a."rehab ) applying increases likewise to a malnutrition they know they do not understand and also applying the suspension of alternative feeds designed for people who get jip from the usual feeds. N.I.C.E can trace it, they have a long list of alternative feeds, shows the ingredients and costs and the conditions needing special formulas. These are bespoke feeds

for instance: https://bnf.nice.org.uk/borderline-substances/oral-nutrition/

> restrictive-therapeutic-diet/
> foods-for-special-diets/
> specialised-formulas/specialised-formulas-for-specific-clinical-conditions/

> nutritional-supplements-non-disease-specific/nutritional-supplements-more-than-1-kcal-ml-and-less-than-5-g-protein-100-ml/

But first - to prevent future deaths - N.I.C.E must break with and break the convention still being mishandlled and inappropriately applied to some people with ME / CFS as if its a professional lifestyle choice, citing N.I.C.E or Cochrane when it suits as if its mandatory, but when it doesn't suit both N.I.C.E andd Cochrane are flung out the window (think endometriosis), as its only guidance, the doctor must have margin to choose, true, but authority must set bounds upon the discretion allowed its officers, the police know this, the doctors know this, so do N,I.C.E and Cochrane being the authorities that can be cited or disdained

Pity the child exposed to the 2 mutually exclusive clashing theories with N.I.C.E saying Cochrane's theory is putting the child at risk ( section 6 I think ) so Cochranes said no it is N.I.C.E theory putting the child at risk ( of deconditioning ... see BacME ? ) and unfortinately the Judge was confined to disputes between parents and doctors over some unfortunate child, as if there is a lot of it about just because of one case history alleging that the deceased father had indoctrinated his daughter with a false illness belief

I am so very sad

THese cases should not come to court they shuld be multi-disciplined before it comes to that. Happily the British Psychological Society is setting a new standard, so maybe it will cover misdirected rehab, and prevent furure deaths

Due to the rehab model still being indiscriminately and inconsistently and arbitrarily ( in undisciplned quarters ) applied to any body-system that ails - Miss Boothby O'Neill was not only pushed a mite beyond limits and endurance even while bedridden - she was also, on the same rehab model, plainly, in my view, denied what she could have been offered, the full range of available alternative feeds listed on N.I.C.E for people with conditions that cause them intolerable problems with the usual feeds, but as she was made an exception, inexplicably, no-one could offer her an alternative to the feed that gave her too much jip, even though her local dietician sets the guide at BAPEN

Such was the intractable convention for so-called intractable M.E that even the Coroner thought there was no alternative and asked N.I.C.E what to do about that ( to prevent future deaths so "its intractabe but it isn't" ? ). Seems only N.I.C.E can amend an intractable rehab theory. Amended in theory but amended guidance is mandatory when it overlaps with law

Did Larun report the conventional rehab conflation of severe M.E with intractable conditions ? it seems to have got the Coroners conflated too. Or was Larun one of those prudently excluding severe cases from the cohorts ?

The exertion demanded of Miss Boothby O'Neill, to sit up to swallow, to this, to that - its a tragedy that so many aging people get the same nonsense when they cannot fill the gap between what they can do and what the social serivces will do so the home help is told to tell them and tell all their visitors that old people "must do more for themselves", they must "keep moving to keep their blood flowing", and "we know this because they are frail". But thats over the limit on how far and often they can safely hobble

 

One particularly nefarious and deceitful thing in all the psychobehavioral rehabilitation paradigm is that it's agnostic to theory and cause, that all they do is 'pragmatically' test treatments and neutrally report on whether they are any good.

It doesn't matter that those treatments all have their theories explicitly spelled out, in the papers themselves and by the same researchers on many other occasions, they still go on and pretend like it's a neutral thing that they're "just trying". Because hundreds of times with the same generic formula isn't enough, clearly. The recent "living review" in the BMJ is framed the same way. Even though it's described not just in detail in the papers, but the very treatments are usually mostly about teaching a specific theoretical model.

So they will simply say that they don't have any views about a particular theory behind the illness, that it's controversial and that they make no claim or determination either way. Even as they keep this review under "common mental disorders". Basically: they can lie however they want because those lies are fundamental to the professional identify of the health care industry, and there is no serious real here.

The updated Declaration of Helsinki has a section on avoiding research waste, which technically should be useful in that any future 'pragmatic trial' using the same useless (to us) methodologies and design that have been done hundreds of times before, all of which explicitly feature a theoretical claim, have all been overdone way too many times already and thus constitute research waste. But it's just a declaration, a bunch of words, and organizations like Cochrane don't even follow their own rules when they prefer to cheat on the outcomes so it's not as if anyone will feel compelled, even though those rules are a common selling point in their marketing, let alone actually through some oversight mechanism.

 

I thought so, that is the distinct impression I got from the wealth of info given me here, so it looks like its just about "assessing" the alleged or indicated or suspected or proven risk of a rehab model, as applied to legwork, in such cases, and with a sneaky label conflating the pacing with the rehab. As ever the wordplay is stunning.

Do all rehab models have in common some increase and partial restoration (of function, capacity, capability and faculty), as applied to various body parts ? Partial or full recovery is a hot potato promise. I should search the Cochranes' database for their assessment of nutritional and speech and swallowing, perceptual and continence etc rehabs - challenge may be the common denominator of some maverick rehab model of applied behavioural science). I don't yet know quite what N.I.C.E made of Larun 2019

Got it, yes, I saw this here, in the quotes about the inquest evidence, so I agree, and I can well believe it, so maybe I can refocus from the input ( theory ) to the undeniable output ( claims of cost-effective results) claimed in tender for the budgets i want spent on ME / CFS


Jonathan Edwards said: ↑

" For general practitioners Cochrane reviews might have been particularly important because GPs rarely had the opportunity to scrutinise recent evidence on a topic in detail in the way specialist physicians would do at society meeting and in journal clubs."

as you say, in the past it “kept doctors abreast of management options on a broad front ... to update the wider knowledge base needed to judge how to handle problems outside one's immediate focus”.

Where are the sound-bites a GP and Pharmacist and Dietician will read... authored as required by N.I.C.E (by a secondary level consultant) to advise the primary care field on the NG 206 Guidance re legwork and rehab ?

We’ve had 3 years and all I got told was that no profession will take it from me, it had to come from a doctor. Maybe if I condense it myself as I had originallyplanned to do then mayybe a doctor in N.I.C.E would sign off on it.

Spoiler: dreadful doggerel

GP and Dietician went to sea
in a beautiful pea-green boat
said GP to Dietician
hand on heart and take the oath
what for said Dietician
and the GP replied
so I can send you patients
and in case they then died
high high calcium must be what they ate
oh no said the Dietician you GPs just do not correlate
high high calcium must be parathyroid
10 GPs refer it to me now I am annoyed
I wish you'd all stop telling them its due to their diet
All I can do is tell them its not true but on the quiet
please read your Cochrane make no mistake again
get up to speed stay up to date apply some zen

 

Also it is only relevant to mild CFS as defined by the Oxford Criteria, so can not be applied to the more severe and not to people with ME/CFS as defined by NICE which requires PEM.

Also whilst there was controversy about publishing the latest Larun et al redraft in 2019 an independent advisor was called in who said that it should only allowed for publication if they clearly pointed out in both the conclusion and the abstract that the effect was not clinically significant. This recommendation was ignored without any explanation.

So Larun et al does not necessarily apply to what we now understand as ME/CFS, it is only relevant to those with mild impairment and the exercise recommended only has a trivial effect.

So people using it to support the blanket use of exercise based interventions have failed to understand the actual paper, and that is before the methodological flaws and failure to address harm.

 

This is what really baffles me. Inappropriate as it is, Larun et al was never a ringing endorsement. In fact if it had been for a new drug, it would probably have failed the cost/benefit test.

 

Good point!

 

Noted.

 

What’s the story on that Canada LC guideline? Was it past reviews that got them that seat at the table or the absence of Nice there and the McMaster uni now housing Cochrane , or has that always been its position over there?

 

Thank you all who prepared and contributed to this update.

 

I wish I had a more reliable memory for details, but isn’t wider consultation including with patients part of Cochrane’s policy.

In the case of the ME/CFS exercise review Cochrane in 2019/2020 committed to patient engagement on this issue, indeed presented the creation of the IAG as a radical new approach to patient engagement. What little we know suggests since at least 2023 Cochrane have if anything obstructed the progress of the IAG and certainly they have failed to respond adequately to our communications as well as our open letter from some 80 patient organisations and completely ignored the existence of this petition.