Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

Yes, but why can't the review writing group tell us what's going on? What about this "forging better relationships with patients" Cochrane's Editor in Chief said she was committed to? Why does Hilda have no knowledge or control over the delay?

 

Yes, could be. Wouldn't Hilda's independent advisory group be able to help with that? It's so bizarre, even for Cochrane.

 

Thank you Caroline. It's becoming increasingly clear that the entire EBM paradigm needs to end, it's nothing but politics behind the scenes and marketing in public.

Taking the incident with the fraudulent papers that, when taken out, don't really change the outcome and how it doesn't bother anyone. Similar to how NICE found that most trials were too awful to use, then IQWIG going even further, but nothing that once you take out the very bad trials and only keep the bad trials, they pretty much say the same things. And it doesn't bother anyone!

Seriously, though, no other profession would ever use such flimsy evidence. No professionals use bad evidence knowingly. About anything. It's one thing to have a bad form of evidence and make it better over time, but the opposite is happening as the paradigm is reaching the limits of how much BS it can put out. The standards keep getting lowered and lowered, as if bundling a bunch of disparate therapies for random uses together in one supercategeory, the equivalent of having a generic review on "medication", was not enough of a tell.

At this point I don't really care anymore about this review. The time has long passed and it's become a sick joke. The process started in 2016 and we still have complete radio silence. This is simply insulting. Long Covid massively increased the importance and urgency, and this organization dedicated to clinical evidence is entirely oblivious to it. Absurd. The detachment from reality is too extreme, there is simply no connection between what these people are doing and what is needed.

Frankly, I think we should move on from criticizing ME-specific research, none of the BPS research has much to do with us anyway, and take on the entire paradigm. It has clearly failed, it's just that with thousands of jobs dependent on it and billions wasted in escalating commitment, the industry itself will not move. There is job security with no real work involved. Too easy a scam to let go.

The very idea of making life and death decisions about millions of people based on bad evidence is absurd, wrong in itself. This is what's at. EBM is the lowest form of evidence of any profession, consistently pointing out how the lousiest standards are needed for this pseudoscience to go on is a hard position but it has the truth. This is clearly much bigger than us, and Garner's and other's increasingly irrational behavior can only be explained by the challenge they face. This has to end. Let's end this error.

 

Agree. Systematic reviews are now a monstrous self-serving industry. I remember one clinician (dementia) I worked with at Cochrane saying the main reason he did Cochrane reviews was to get out of having to see patients who he knew he couldn't help because there were no (very) effective treatments.

 

EBM was a potentially worthy idea. Cochrane made some real progress early on. However how it has evolved, with economic and political and other pressures, means much of it is not fit for purpose. The failures in governance of the EBM infrastructure shows systemic issues. There is no overarching governing body to correct anything. If there was I would also be worried about them.

Then there is the other thing that seems to be missing in the EBM debate. Calling them guidelines is fine, but doctors need the skills to know when and how to use other protocols. They need the resources and permission to do so. Any patient for which standard treatments do not work, and there will almost certainly be some small percentage, including many with ME, needs doctors who can work outside the guidelines. So they need the ability to do so in many different ways. Currently I see political and bureaucratic pressure to stick within guidelines, as though they are always perfect. We know they are not perfect from a patient outcome perspective, and so do doctors, but they are constantly forced to work within the system.

I am currently fighting doctors myself because standard treatments for my type 2 diabetes either do not work or have dangerous side effects, or there is now sufficient science to show they are suboptimal. There are treatments not in the guidelines that work much better for me, yet every doctors visit is a struggle because they insist on trying to convince me to use treatments I have already rejected, including those that caused dangerous side effects. ( I don't think they are really side effects, but direct consequences of how the drugs work in a body with long term ME and other issues. In other words, they are trapped in the closed world assumption and cannot allow themselves to admit their guidelines are useless in a subset of patients. The guidelines are oversimplifications, but they are compelled to follow them.)

 

this has got to be one of the worst and longest running 'pilots' ever.

failures at just about every stage listed here:
The statement of principles for consumer involvement in Cochrane
https://www.cochrane.org/news/statement-principles-consumer-involvement-cochrane

and ditto their main goals:

https://www.cochrane.org/about-us

 

Agreed. Frankly, Long Covid has essentially made this review irrelevant. Not just the update, the review itself. There is a brand new crop of identical(ly bad) studies and trials being done for LC, in addition to the move toward even more generic and vague fluff in the form of FND/MUS.

Regardless of what this update could say would be superseded by the shiny new toys coming out of the copy-paste assembly line. We know the substance is irrelevant, it's the endless stream that matters, all quantity with no quality.

Without LC we would be stuck with this and would have to continue working with this sorry state of affairs. But LC has truly made it entirely irrelevant. It would have been the exact other way around had the obvious need for urgency been noticed. But instead a massive and urgent need was used to delay further and do nothing, while saying nothing about it. Talk about missing the boat. As the boat's owner.

End this pointless exercise, the time has long passed already. The horse has left the stable a looooong time ago. The only thing to do is escalate to Cochrane's leadership and point out how they have failed. They won't do anything with it but it will matter over time. The EBM party is over, the music stopped. All that's missing is for the lights to be turned on for the horror left in its wake to be seen.

 

Could this actually be contributing to the delay? Too much new information?

 

or have the stakes just got higher?

are the LC community aware of this Cochrane review? (and supposed update) and the continued impact it has in terms of being used time and again to support use of GET.

 

@ME/CFS Skeptic
put together a very insightful thread on how the review has been used in various countries
https://www.s4me.info/threads/the-influence-of-the-cochrane-review-on-get.11768/

maybe we should also have a thread on recent decisions/research that also cite it as justification for LC rehab practices (although, ironically, unlike ME/CFS research, many of those in LC research seem to be acknowledging PEM and adding caveats).

 

I had posted on Oct 2 that I anticipated the draft protocol would be released for review by the IAG and the public soon but did not have a specific timeframe for that. I'm asking but don't know anything further myself at this point.

 

Complete radio silence and a fully secretive process make it impossible to know. I don't think anyone outside of us is aware of this. Even though it keeps getting cited, this is pretty niche.

Maybe this is taken into account, doubtful though. It would make sense to emphasize it. I assume that the work behind the scenes, Garner's bizarre behavior strongly suggests a lot of it is happening, plays a far more significant role into what's happening. It's all politics, this entire organization is nothing but high school politics.

 

just looking at the WHO Living Guideline for Covid-19.

The 2019 Cochrane review (Larun et al) is cited (434)

https://www.who.int/publications/i/item/WHO-2019-nCoV-Clinical-2022.2

(I haven't gone through this in detail but there are several other references to Cochrane reviews).

 

OK not keeping up as usual!
Just Googled and found this* ---
"---established her own consultancy business providing evidence synthesis services to government agencies and not-for-profit organizations. As editor-in-chief, Dr. Soares-Weiser is responsible for ensuring that the Cochrane Library meets its strategic goals of supporting health care decision-making by consistently publishing timely, high-priority, high-quality reviews and responding to the needs of its many users."

So we're the victims of Government policy based on flawed evidence --- worse still, some politicians will lap this up as it resonates with their view of themselves versus those who are ill - think of the attitude Paul Garner displayed re his "recovery" -- off for the bucket list diving trip --- well, because he's worth it.

Thanks Caroline we need to challenge this stuff.

*https://uk.cochrane.org/karla-soare...r-in-Chief, Cochrane,in this field since 1997.

 

Cochrane provides a link to Guidelines that use its reviews:

However, I can find no link to the 2021 NICE guidelines (where the evidence was downgraded) either for the 2019 version, or the 2017 version (as cited by NICE :
48.Larun L, Brurberg K, Odgaard‐Jensen J, Price J. Exercise therapy for chronic fatigue
syndrome. Cochrane Database of Systematic Reviews 2017, Issue 4. Art. No.:
CD003200. DOI: 10.1002/14651858.CD003200.pub7.
https://www.nice.org.uk/guidance/ng...acological-management-of-mecfs-pdf-9265183028)

(https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD003200.pub8/information#versionTable)