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

I wonder, at least in relation to the Project Website, if somethings is happening soon, given Hilda Bastian is holding back at least some comments on her blog awaiting moderation (at least two, @Trish’s for over three week and mine for some two weeks). Normally she is fairly prompt at responding to comments, so wonder if she is expecting an update to the website soon to allow her to give her responses a more positive spin.

 

Thanks @Peter Trewhitt that's even better.

Prevarication definitely. Either way this thread is now evidence of Cochrane's contribution towards causation of harm. This is from something I've already prepared:

1. Human rights (who.int) For those unfamiliar with this, my I introduce you to the Right to Health. The AIDs campaigners had to make themselves very familiar with this among rights. Right on the landing page you will find:

"This means that countries have legal obligations, while acknowledging that time and resources are required to fully achieve them. Some immediate obligations for countries include the guarantees of non-discrimination and equal treatment in health. The right to health includes entitlements, such as the right to control one’s health, informed consent, bodily integrity, and participation in health-related decision-making. It also includes freedoms, like freedom from torture, ill-treatment and harmful practices.​

The right to health is closely related to and dependent on the realization of other human rights, including the rights to life, food, housing, work, education, privacy, access to information, freedom from torture and the freedoms of association, assembly and movement. It includes both non discriminatory access to quality, timely and appropriate health services and systems and to the underlying determinants of health. "​

2. Cumberlege Report "Do No Harm" (2020) From the Recommended actions for Improvement

‘not make comfortable reading for many who have dedicated their lives with the best of intentions to delivering high-quality and compassionate treatment and care…'Most people do excellent work most of the time in the health service.’

‘Innovation in medical care has done many wonderful things and saved many lives’. But – and it is a very big but – ‘innovation without comprehensive pre-market testing and post-market surveillance and long-term monitoring of outcomes is, quite simply, dangerous…Without such information it is not possible for doctors and patients to understand risks, and patients cannot make informed choices.".​

3. Montgomery v. Lanarkshire Healthboard 2015 reminded the medical profession of the autonomy of the patient 'consumer' is of primary importance. It makes it very clear that the patient is the decision maker, where there is capacity.

4.

"If these inactive Cochrane reviews are still used to guide treatment and research, it may contribute to the distribution of outdated evidence to other research articles, guidelines and decision-makers (Higgins 2022)"

"It can therefore affect patients negatively if Cochrane reviews are not kept up to date (Murad 2017)"​

The Petition evidences testimony of the level of harm caused. (Literally thousands)

To simplify all this, if this were a card game, it's at this point I'd say something like: I see your maleficence and non-maleficence and raise you with the autonomous patient and the right to health and to life.

Oh by the way, here's a link to a discussion of the Consumer Rights Act 2015 What are my statutory rights, and when do they apply? - Which?

"Everything you buy must conform to the Consumer Rights Act, which says all goods and services must be of satisfactory quality, fit for purpose and as described.

If your goods don’t conform to this, then they are classed as a faulty good and can be returned for a refund, repair or replacement depending on the length of time you’ve owned them for.

This statutory right applies regardless of whether you purchased the goods online or in store.
Everything you buy must conform to the Consumer Rights Act, which says all goods and services must be of satisfactory quality, fit for purpose and as described.

If your goods don’t conform to this, then they are classed as a faulty good and can be returned for a refund, repair or replacement depending on the length of time you’ve owned them for.

This statutory right applies regardless of whether you purchased the goods online or in store."​

That's me done for today. Thanks to the Committee for all your hard work on this.

 

Another problem that has long been solved in software development. In most library packaging systems (basically ways to use code written by someone else) there is a versioning system that will throw warnings or errors when using deprecated versions of a library, even sometimes email the authors of a code repository to make sure they know that they are using unsafe or unsupported code.

It's absurd that medical academia is still stuck at the pen and paper level even though they have access to the best tools and resources available. There is an entire freaking industry that has solved most of those problems and they just... don't care? Can't be bothered? Refuse to use tools built by others? It's baffling.

 

To be fair, I got quite a bit for assuming Excel must be able to calculate time, because it'd be ridiculous if it didn't.

"I'd never have thought of scheduling on a spreadsheet!"—former boss, who still hadn't quite got over there not being a typing pool any more.

 

Current total is 10,626

https://www.change.org/p/cochrane-withdraw-the-harmful-2019-exercise-therapy-for-cfs-review

 

The thing is all this makes even me confused to remember the original date they got sent the petition

it would be good to have ‘what anniversary it is’ of that date in particular (eg six months, 7 months and so on) added to eg any things we might circulate to remind people / highlight exactly how long they’ve been playing the blanking game for (yes after having played that game before that leading to said petition)

 

As well as including the petition submission date as suggested by @bobbler, is it relevant to record here the promise made by Cochrane to us to overhaul their complaints process, after much prevarication in response to our questions and then formal complaints, and their stated intent to investigate aspects of our complaints on an unspecified time scale.

Though they did not specify which aspects would be covered, there was, if I remember correctly, intimation that the now overdue update to their website would address some of our issues.

At best Cochrane are incompetent and totally immune to embarrassment and at worse this ongoing prevarication is a deliberate attempt to retain their deeply flawed and harmful Exercise Review in the literature as long as possible.

 

Certainly, I have no faith that the current Cochrane set up is capable of producing an objective account of e exercise in relation to ME/CFS.

At present any process looking at exercise intervention in relation ME/CFS is a waste of time. The current evidence base in relation to any activity based intervention is deeply flawed and is not worth any further examination, beyond the existing NICE guidelines evidence review. The evidence of harm is such that the only medically sane advice is that any attempt at using activity/exercise as a treatment for ME/CFS is contra indicated and unethical.

There is potentially new research that could be done trying to distinguish between the few that spontaneously improve and can increase their activity levels and the majority who do not. Also we need better understanding of how activity levels trigger PEM. But there is no existing evidence worth the effort of a Cochrane review.

 

Point taken.

 

It was mostly an update about reporting possible future things, nothing to report, so not even that. Nothing happened, so there was nothing to report, and what we were told is partial at best. 6 months later, still nothing. So that was really just for show. As far as we know, nothing is happening anyway. We can't trust that the information Bastian tells us is true, and no one else says anything. The only new thing was about some note and we can't even trust that this is happening, so that wasn't a real report.

As far as I'm concerned, until proven otherwise with actual things to report, this is dead in the water. And likely always was. The only way this changes is if it becomes overcome by events, if factors outside of us and Cochrane force the issue to move. Like a research breakthrough. The rest is just lies to pretend that they're following their own rules, while not bothering to even respect the spirit.

 

Hi All

Here's the latest from my now year-old complaint about the Editor-in-Chief. I referred it to COPE because Cochrane refused to investigate it. I then re-referred it to COPE because Cochrane has no documented procedure to handle allegations of editorial misconduct. COPE wrote to me yesterday to say that, "as they understand it", Cochrane does have at least one documented procedure to deal with such allegations, and they gave the example of the conflict of interest referral panel. So I forwarded the original complaint to them (coiarbiter@cochrane.org), text in italics below.

Hi there

I am making this allegation in a personal capacity and not as a representative of my employer.

This is a forwarded complaint about Karla Soares-Weiser’s editorial misconduct. I originally sent this to the complaints email address, as instructed by Catherine Spencer, on 23 March 2023.

Catherine consulted the Co-chairs at the time, and they decided there would be no investigation of my allegation.

COPE stipulates that allegations of misconduct should be taken seriously https://publicationethics.org/misconduct, so I complained to COPE that my allegation had not been investigated, and Cochrane had no process in place to investigate allegations of editorial misconduct.

COPE wrote to me again today to say that, as they understand it, Cochrane does have at least one process to investigate allegations of editorial misconduct. They gave the Research Integrity and COI referral process as an example. https://training.cochrane.org/onlin.../coi-policy/referrals-conflict-interest-panel.

Please refer this allegation to the Research Integrity Editors and let me know the timeline for an investigation.

With best wishes

Caroline

 

Thank you for your persistence @Caroline Struthers and @Trish. It is a shame that David Tovey wasn't able to stick to his guns. It was an important moment.

 

I agree, David Tovey's capitulation was very disappointing. I think Cochrane was scared of the Norwegians, specifically Atle Fretheim, but I'm not sure why.