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

Ted Hastings is a bit of a cult hero for many, standing for truth, integrity, and the letter of the law. He's head of a fictional UK Police Anti-corruption unit called AC-12. I am a recent convert and now addict of the show which has just concluded its 6th series. https://en.wikipedia.org/wiki/Line_of_Duty

 

My youngest aged about 2 1/2 used to love his sister's hamster and go and push bits of lettuce thro the bars of the cage. Even after she nipped him one day, he still persisted!

For some reason watchdogs without teeth made me think of gummy bears.

Anyway, back to Cochrane...

 

No more Line of Duty spoilers please! I've only just started watching.

 

I heard from COPE today, and, as expected, it's all magically "out of scope". At least Cochrane were bounced into putting the "do not use" notice on both records of the CBT review which I am sure they would not have done otherwise. I have attached the final response from COPE and my reply to it.

 

Good idea. Will you write to them Caroline? Might be worth cc-ing Carol Monaghan and your MP too.

 

Weird how accountability and oversight are out of everyone's scope. Even organizations whose very scope is oversight and accountability. Funny how that doesn't work. People had to decide to do those things. And yet those people can somehow claim they didn't.

I guess people just assume someone else must be doing it. But clearly it's just an honor code. Which breaks down completely when dishonorable people have the upper hand.

But this does confirm that there is genuinely no oversight or accountability in the system. Everything is just a suggestion unless someone decides otherwise, and it's all down to personal judgment and/or interests. If no one meets the intersection of interested and able to do something about it, there may as well be a rubber chicken in charge for all that it matters.

 

Yes I will...will run the letter past you all first.

 

HAve decided to try and engage with https://firstdonoharmappg.org.uk/ instead. And copy in Carol Monaghan and my MP (Anneliese Dodds) in the correspondence. I will attend the meeting about a register of interests for doctors on 21 May
https://firstdonoharmappg.org.uk/20...inancial-and-pecuniary-interests-for-doctors/. It's a public meeting, so anyone can go.

 

Oh yes! I wouldn't have given a timeframe if I wasn't sure.

 

That’s good to hear, although I am mindful that you told us in March that “it shouldn’t take anything like that long” when asked if it would be published by 21 April:

 

Yes, I didn't think it would - but then I had to set aside finalizing the report for something else that came up with this project. That's all done, and the reporting process is on track.

 

I attended most of the session with NICE at #Virtually Cochrane on 22nd April. https://uk.cochrane.org/our-work/events/virtually-cochrane-2021

I followed up NICE's response to a question about whether they give feedback to Cochrane when relevant Cochrane reviews cannot be used in guidelines. The moderator paraphrased the question and didn't mention the bit about the reviews being misleading and harmful. In my email (pasted below) I asked whether they also fed back to triallists and to their funders when studies reviewed by NICE were rated as of too low quality to support treatment recommendations. I think this is one service Cochrane and/or NICE could provide which would be a constructive way to improve future research, and, in the case of Cochrane, address the "garbage in garbage out" which afflicts many Cochrane reviews.


My email to Clare Wohlgemuth is below

From: Caroline Struthers
Sent: 14 May 2021 15:13
Subject: Feedback to Cochrane from NICE Guideline Developers

Dear Clare (if I may)

I am writing to you in a personal capacity, not as a representative of my employer.

I recently attended Virtually Cochrane as a consumer advocate, including the session Collaboration,
NICEly done (https://uk.cochrane.org/collaboration-nicely-done). I am following up on the answer you
gave during the Q&A about giving feedback to Cochrane if their reviews can’t be used in a guideline.

For the recent draft NICE guideline for ME/CFS, the evidence review for non-pharmacological
management, (https://www.nice.org.uk/guidance/gid-ng10091/documents/evidence-review-7), states
that two reviews currently on the Cochrane Library could not be used. One Cochrane review of exercise
interventions (Larun 2017) and one Cochrane review of cognitive behavioural therapy (Price 2008) did
not include all critical outcomes specified in the NICE review protocol and included study populations
where not all participants had ME/CFS. Please could you let me know if more detailed feedback was
sent to Cochrane as per the guidance in the NICE Guideline Support Document which states the relevant
Review Group, Network, and Toby Lasserson would be notified when this occurs. Please do pass this
enquiry on to the appropriate person at NICE who can let me know.

Do NICE also give feedback to triallists if the trials are of too low quality to be used to support treatment
recommendations? That would be a valuable public service both NICE and Cochrane could provide to
help drive up research standards. It would be especially powerful if funders were made aware of cases
when their funding had not produced good enough quality evidence to inform clinical guidelines.

I have also recently been made aware that both the Cochrane reviews mentioned above have been used
in the NICE Clinical Knowledge Summary for tiredness in adults (https://cks.nice.org.uk/topics/tiredness-
fatigue-in-adults/), specifically to advise referral for exercise or CBT to management those who meet the
diagnostic criteria for CFS (sic) (https://cks.nice.org.uk/topics/tiredness-fatigue-in-
adults/management/management/). This directly contradicts what is in the draft guideline for ME/CFS
which recommends people with ME/CFS should not be offered any therapy based on physical activity or
exercise as a treatment or cure, or any programme based on fixed incremental increases in physical
activity or exercise, for example graded exercise therapy. It also recommends not offering CBT as a
treatment or cure for ME/CFS. I have lodged this concern via your feedback system
https://www.nice.org.uk/leave-feedback

Cochrane have recently added an editorial note to the CBT review
(https://www.cochrane.org/CD001027/DEPRESSN_cognitive-behaviour-therapy-chronic-fatigue-
syndrome) to say it should not be used for clinical decision making. However the review has already
been used in four recent clinical guidelines, including the NICE Clinical Knowledge
Summary. https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD001027.pub2/related-
content#guidelines_data. As far as I know, Cochrane have not contacted NICE or the other three
guideline producers to alert them. Again, do pass this question onto Toby if appropriate, or I could
contact him direct.

With best wishes

Caroline

 

Great article in the Healthwatch Spring newsletter, by @Caroline Struthers

https://www.healthwatch-uk.org/publications/newsletter/newsletter-114/221-114-cbt-get.html

 

Thread here, HealthWatchUK: It is not only drugs and devices that can harm, 2021, Struthers

 

The page says that the meeting will be co-chaired by Fiona Godlee. I hope your question(s) will be addressed directly rather than evasively.