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

l’d be really embarrassed if I had to stone wall sick people for a career.

 

Well, the good thing is that it's very unlikely that it continues existing more than maybe 5 years, AI will replace all of this useless industry. They add nothing whatsoever to the process, being a garbage in-garbage out process.

 

This document probably needs it's own thread, but I'm crashing very badly and this is all I can manage to do, sorry.

I suspect this is the real reason the October 2019 Cochrane Review cannot now be withdrawn. A higher authority.

A change in the order of three little words and the whole picture changes:

Safe and effective, not effective and safe(ish) = patient safety a WHO first priority (Do no harm) seen in practice this document.

Clinical management of COVID-19: Living guideline, 18 August 2023 (who.int) Check out pages 109 -127.

For example page 112 - rehabilitation post COVID-19

"Conditional recommendation for​

An early referral of adults with post COVID-19 condition for appropriate rehabilitation services is suggested when experiencing symptoms and impairments that may be managed effectively and that have an impact on everyday functioning, when red flags for safe rehabilitation have been considered."

"An individualized assessment is suggested which preferably involves a physician to define underlying organ damage and to exclude red flag disorders prior to starting rehabilitation (357)(362)(138)(140)(380)(381)."

"Evidence to Decision
Certainty of Evidence

A systematic scoping review for the model of rehabilitation care including referral principles (Annex 8) only identified papers that have been based on expert evidence and no GRADE certainty of evidence assessment has been applied. The recommendation is based on expert evidence."​

The ethics on page 127 particularly worthy of note.

Relevant informaton on this page in respect of the Cochrane review taking the story all the way back to 2004.

Exercise therapy for chronic fatigue syndrome - Larun, L - 2019 | Cochrane Library

Patient safety is not a casual, as and when you get round to it, approach. It is a legal/ethical imperative.

So, why does it require a bunch of severely affected ME/CFS patients to uncover all this information? Why aren't, the UK government, DHSC, DWP, NHS et al informing patient ME/CFS and applying the same conditionality surrounding symptoms and red flags?

 

re 'lack of accountability' I was thinking of how it resembles situations I've encountered in the area of special needs education and children's services, where systems created for helpful purposes become mechanisms for keeping people at arm's length from the decision-makers and preserving the status quo. Of course in SEND there comes a point where you can break the impasse by getting lawyers involved on behalf of an individual who is being put at risk by systemic inaction.

 

I wonder if this is what it will have to come to with Cochrane. The regulators and other bodies (charity commission, COPE, HRA, WHO, NICE. APPG etc.) either have no power, or don't want to make any decisions to rock the establishment boat - i.e. upset certain powerful establishment medics who are, I guess, "the higher authority"

 

WHO have stated globally its approach to rehabilitation as it is to be applied to post COVID-19. The 2020 version is not so detailed on post COVID-19 rehabilitation as this 2023 one is. It cites the Cochrane review as the basis for some of it's decisions. WHO are therefore, the higher authority.

It is for the Nation states to take their own view and approach regarding post COVID-19 rehabilitation, as a result in light of WHO guidance. If you consider the various closing of borders etc, and differing applications of lock down in nation state during the pandemic, but the global uniform wearing of masks, you can see the principle at work.

For example, I noticed in a long covid podcast which @Dolphin posted on a thread last weekend, can't remember which thread, that one of the UK podcaster's was talking about a referral she'd had to haematology, just before they interviewed Nancy Klimas. In the UK we are banned from blood donation as now are Long Covid patients.

Now in the UK MDT long covid clinics that's how it's supposed to work, as per this WHO clinical management 'Living' guidance and that's how it is working.

Whereas in the UK, ME/CFS clinics such as there are, are limited to occupational therapists and physios. Behavioural rehabilitation only.

But it got me thinking about what I'd already discovered about 2004 and the WHO patient safety alliance, and various events in 2023 in the process of preparing my timeline for this illness. So I went in further search and found this document a couple of days ago. It's taken me this long to skim through it. Didn't realise there was another on thread on WHO stuff, sorry.

Here in the UK Nation states, it is for the states individually i.e. Wales, Scotland, Northern Ireland and England, and the UK government as a whole, to apply WHO guidance as it sees fit. For example, we know how loosely successive UK governments have applied the 1969 definition of ME ever since it's inclusion in the ICD.

NICE already stated it's similar approach to the quality of evidence to support CBT and GET as low or moderate GRADE in 2021, and that harm has been reported. They stood by that decision in their robust reply to the 10 July 2023 'Anomalies' paper, which was not published until earlier this year.

2023 was a significant year for global discussions regarding patient safety in general, and in particular in the UK. I've called it the year of broken trust in my timeline. I'm splitting out 20023/24 as a sample of the timeline which I hope to be well enough to complete, and publish by the end of this week and you'll see what I mean. This is an example:

10 July 2023

Anomalies paper

18 August 2023

WHO Clinical Management of COVID-19: Living guideline

4 September 2023

'My Reality' consultation on the interim ME/CFS implementation and delivery plan. UK gov't consultation process, acknowledging stigma, a need for a change of attitude etc. so long after the then SoS for DHSC Sajid Javid's announcement in early 2022. He even questioned the delay in relation to his announcement when he was SoS, during the Westminster Hall debate on 1 May.

We were all so grateful (with an experienced degree of caution) for the fact that these things had finally been publicly acknowledged in the interim delivery plan, after 67 years, that perhaps the landscape in which that process was suddenly launched, went un-noticed, representing as it does a seizmic shift in UK approach, because it will become a government policy document.

So in answer to @Caroline Struthers question, who are the "higher [expert] authorities" advising in the UK government and by extension the NHS, on the question of rehabilitation for post-COVID 19 (WHO style) which is very different from rehabilitation in ME/CFS despite the similarity is post viral disease presentation.

There are no checks and balances on the question of 'conditional' referral for rehabilitation, recognising 'red flags' such as PEM and OI which in ME/CFS, drastically limits the nature of such rehabilitation techniques = health inequality.

 

If I have the energy in the next few days I’ll send it to Chantal Britt, the head of the swiss long covid association (assuming they haven’t already signed it yet)!

 

Cochrane got a consultant (Scott Wayne, an expert in mediation) to help re-vamp their complaints procedure. With feedback from the community, apparently. And they posted a video all about it.

https://community.cochrane.org/news/new-complaints-procedure-cochrane

It allows people to engage with Cochrane, even if they *think* (my emphasis) Cochrane has done something wrong (surely impossible?!) in a positive way.

right

 

The new Chair of Cochrane Governing Board is Susan Phillips https://www.cochrane.org/news/cochrane-new-board-chair-announcement. Taking over in July. I bet Jordi Pardo Pardo will be relieved!

Here she is alongside our friend Paul Glasziou (promoter of GET...sorry, I mean "Incremental Physical Activity" - https://www.racgp.org.au/clinical-r...ded-exercise-therapy-chronic-fatigue-syndrome - advisor on the exercise review, and PhD supervisor of Hilda Bastian) on the scientific advisory board of a healthcare data software company
https://www.evidentli.com/company

 

They agreed to sign! Who can I private message to send the proof? And also share some questions they asked me, looks like we might get a signature from Long Covid Europe and Long Covid Kids Switzerland too.