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

What I find bizarre is this recent obsession with medicine by anecdote, by so called proponents of evidenced based medicine. The defendants of Larun et al (2019 masquerading as 2024) having failed to win the argument on the science now rely on asserting personal clinical authority and anecdote. Presumably advocates of universal blood letting used exactly the same arguments.

We know a number of people report recovery from ME/CFS, but the studies we have suggest that they are a very small percentage and the advocates of exercise based interventions have completely failed to address this, have ignored the research evidence demonstrating such intervention fails to have any effect other than a temporary uplift on self reported measures and have disregarded the thousands of reports of harm by other patients.

How do you justify harming the majority because you have anecdotal evidence of benefit for a minority? It is a fundamental of evidenced based medicine that the threshold for accepting evidence of harm should be considerably lower than the threshold for assuming benefit and advocating universal application of an intervention, yet here we are seeing a complete reversal of this.

If they genuinely believed in science they would be accepting the contradictions of their approach and delay any intervention until they have established a way of avoiding harm, a way of distinguishing the minority who might possibly benefit from the majority who will with a level of probability be harmed. What we are seeing is medicine based on personal beliefs no different to the approach of unevidenced ‘alternative’ practitioners or snake oil salesmen.

 

Thank you, I had spotted and corrected this, but not before you had read the post.

 

The approach is as bizarre as recommending somebody do the lottery to improve their fortunes, “because some people win a lot of money”!

Proponents can interview as many winners as they like, but it still doesn’t mean it’s a worthwhile investment, nor a good plan to increase any individual’s fortune.

I can’t help thinking there’s an intentional blindness here.

 

And I just bought a lottery ticket, you don’t mean I am not going to win, because I have faith that I will win and because I know one person who won the jackpot twenty five years ago. I thought this knowledge would guarantee a win, especially as the adverts say it could be me. Who could have known winning is not a mathematical certainty?

 

[Sarcasm] Now remember if you don’t win, it’s because you have the wrong mindset. Simple as that.

You will only win if you do everything properly, and exactly as we told you.

Your failure to win simply demonstrates that you don’t actually WANT to win, and that you are enjoying all the secondary benefits of remaining on a strict budget.

Perhaps you need a bit more CBT to help to stick to the proper methods for your GET (Greedy Ejiits Triumph) programme? [/sarcasm]

 

It makes perfect sense when you understand that they have no more evidence than they have principles, and that they can get away with anything because the systems of health care are broken beyond repair. So many people in this industry don't care about any greater purpose. It's just a job, and all the incentives are aligned for them to fail at it. In fact, here failure is success and success is failure. Explicitly.

They're temporarily resting on anecdotes because their evidence base was trashed, but they are redoing it all over again and once they get enough of those for a few BS reviews, they'll be back to pretending like their terrible trials are just what they are, that the evidence is just what it is. Good for another 15-20 years if they can milk it that far. Then back again, until the cycle is broken by a disruptive event like what Barry Marshall did to peptic ulcers.

That's the painful lesson here: they don't. Science is a process, and that process leads them away from where they are, it shows them they are wrong. So they don't care for it and ignore it entirely. We're seeing it happening all over again with LC, every bit of evidence is cherry-picked and anything that contradicts the popular narrative is ignored. Pre-breakthrough medicine is no better than any random Internet community out there at most of this stuff. They are driven by beliefs and, mostly, self-interest above all. They're just like politicians, really. They say whatever gets them what they want.

 

That's why I asked which version of the review was in place in 2011. NICE Guideline 2007 right up to what should have been a publication date of the revised Guideline publication date of 18 October 2021. NHS told to act to stop ME deaths. Channel 4 News. Cochrane is procured, in part, through arm's length funding from the DHSC and this review is in mental health.


Ignoring the Alarms

Ignoring the alarms: How NHS eating disorder services are failing patients | Parliamentary and Health Service Ombudsman (PHSO) 2019

The Royal College of Psychiatry, eventually, responded with this which also included Pervasive Refusal Syndrome May 2022 (updated Oct 2023)

college-report-cr233-medical-emergencies-in-eating-disorders-(meed)-guidance.pdf

29 June 2023 NHS eating disorder services - House of Lords Library

Not our fault, gov'na.

I also suspect that the question in the House of Lords above, together with the PHSO report published by the House of Commons on the same day

29 June 2023
'Broken Trust' Broken trust: making patient safety more than just a promise​

is what lay at the heart of the 'anomalies' paper in July 2023 while Maeve Boothby O'Neill's Inquest was still awaited, because she wasn't a child. Anomalies in the review process and interpretation of the evidence in the NICE guideline for chronic fatigue syndrome and myalgic encephalomyelitis | Journal of Neurology, Neurosurgery & Psychiatry

Publication history​

• Received September 25, 2022
• Accepted May 3, 2023
• First published July 10, 2023.
• Online issue publication November 15, 2023

​

See also pervasive refusal syndrome (rare) https://www.rcpsych.ac.uk/docs/default-source/events/2021/faculties-and-sigs/child-and-adolescent/poster---k-salucci---cap-trainees-21.pdf?sfvrsn=c44100ab_2

A case of pervasive refusal syndrome related to COVID19 | BJPsych Open | Cambridge Core 21 June 2021.

Proof, if any more were needed, that both the Government and the medical profession still view this illness as primarily a mental health condition with absolutely no evidence whatsoever - because a Regulation 28 PFD report was not sent to Cochrane.

But, as Trish says

I haven't received a direct response from either of my complaints to the DHSC either. They just published the responses to the consultation on 19 December, just outside the response time for the complaint, and 3 days after Cochrane changed the date on the Larun et al 2019 review.

I hope this isn't too higgelty piggelty to read, but these are my from my notes over the last year and my thought processes aren't too clear at the moment.

 

I had a journalist asking about the petition today. No idea what he was going to write but he was doing something for Retraction Watch. I said that petition was because the review was a lot of harmful drivel. Or something like that.

 

You must be right, I just didn’t believe enough that I was going to win the jackpot. The only solution is to buy more lottery tickets. Undoubtedly the more I expend on the tickets in a gradual measured way, the better my finances will be.

 

That really will be boom and bust.

 

And keep going when you start to get even more money trouble than before you started buying the tickets - that's normal and actually a sign you are going to win the jackpot.

 

Yes, this is the point that pushing through becomes even more important, so ‘pay day’ loans or other high interest loans are just the way to ensure you repair your finances through winning the lottery. CBT would be just the thing to help overcome any worries or anxiety arising from false cognitions that playing the lottery might make you financially worse off.

Perhaps we should set up a website of Lottery Winners to inspire financial recovery, it could be called Recovery Finance.

 

Great idea, to help patients understand how they can train their nervous system through the wonders of neuroplasticity to affect how the balls in the lotto machines will fall - the healing power of mind-balls interaction.

 

Signatures at time of posting: 14,256

https://www.change.org/p/cochrane-withdraw-the-harmful-2019-2024-exercise-therapy-for-cfs-review

 

Signatures at time of posting: 14,288

https://www.change.org/p/cochrane-withdraw-the-harmful-2019-2024-exercise-therapy-for-cfs-review