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

Thank you. She didn't expect much , but there's always a glimmer of hope that it might be different.

 

Thank you.

 

Sadly, until all medics have some form of education re ME/ CFS this is all but guaranteed to continue.

Unless you yourself or a loved one have experience of ME / CFS there is no hint for a clue about what truly is a parallel universe in which people exist.

 

We're in Scotland and there is no SIGN for ME/CFS - a form of clinical guidelines .
Advice is to follow NICE guidelines , however there is no infrastructure to facilitate this ( previously not a bad thing) .

There needs to be ownership of this condition. Having no specialist consultant capable of dealing with more than one aspect of the illness keeps us in the dark ages .

 

I received a response from Catherine Spencer on Friday which I replied to today


From: Catherine Spencer <cspencer@cochrane.org>
Sent: 07 April 2023 21:18
To: Caroline Struthers <caroline.struthers@csm.ox.ac.uk>
Subject: RE: Complaints

Dear Caroline

Thanks for your message.

We are considering how best to handle your complaint. We recognise that we need to look at it
impartially – the email below was erroneously sent to you, and for that I apologise. A case of me doing
too much at once. I was sending this is a follow up email to one of our co-chairs, who I had verbally
asked for advice on whom we could use to review the complaint and they had asked what the general
gist.

However, it is timely that you have written. In preparation to review this complaint I have been
reviewing previous correspondence we have had with you and of course your current complaint. Thus, it
would be very helpful if you can tell me how this complaint differs to the communication that we have
had with you previously, notably the communications resulting in a response from Mark Wilkinson on 25
February 2023.

I hope you have a peaceful holiday weekend and enjoy the sunshine.

Kind regards

Catherine

From: Caroline Struthers
Sent: 10 April 2023 11:42
To: Catherine Spencer <cspencer@cochrane.org>
Subject: RE: Complaints

Dear Catherine

My original complaint about the review, in November 2018, also called for the withdrawal of the review.
It was addressed to the Cochrane Governors and complained about the actions of David Tovey. It was
referred back to him by them because they said it was an “editorial content issue”. It was not
independently investigated. Details of the complaint and responses are documented here.

1. Original complaint to Cochrane Governing Board - https://healthycontrol.org/2018/11/29/my-
complaint-to-the-cochrane-governing-board-about-the-cochrane-review-of-exercise-for-
chronic-fatigue-syndrome/
2. Reply from David Tovey https://healthycontrol.org/2019/01/07/response-to-my-complaint-to-
the-cochrane-governing-board-about-the-cochrane-review-of-exercise-for-chronic-fatigue-
syndrome/
3. My response to David Tovey https://healthycontrol.org/2019/02/18/response-to-cochrane/
4. Governing Board response to me https://healthycontrol.org/2019/05/10/response-from-the-co-
chairs-of-the-cochrane-governing-board/

I wrote to Karla in November 2020 to ask her to withdraw the review because it contradicted the
findings of NICE and could therefore cause harm to patients.

This was not a complaint about Karla, but a request to her which was refused. A Cochrane editorial
committee decided there were no serious errors in the review. When I asked for more detail on how
they had reached this conclusion, I was not given this information. It was referred back to Karla’s boss
Mark Wilson who is not independent and has no editorial or scientific expertise either. I didn’t post
Wilson’s final letter on my blog for some reason, but most of the correspondence is here.

https://healthycontrol.org/2021/02/10/cochrane-refuse-to-withdraw-cfs-reviews/

Best wishes

Caroline

Caroline Struthers
Senior EQUATOR Research Fellow

 

Stalling. Clearly zero intention of doing anything. What a terrible organization, but sadly not that especially bad compared to the rest. These institutions are completely removed from reality, as removed as the most walled-off aristocracy has ever been. All palace intrigue and politics behind the scenes.

There is nothing to consider here. The review is simply not up to acceptable standards and causes massive harm. But they clearly don't care about any of this, it's all about the brand and the brand's reputation will suffer more in the short term by doing the right thing. Even though it's clearly the right thing. Even though it falls explicitly under the "do no harm" slogan.

What a absurdly dysfunctional system, where doing the right thing is punished and doing the wrong thing gives you awards and endless trucks of funding for pseudoscience.

 

No one from Cochrane has ever said this to me before. It will be very interesting to see who they come up with.

 

And I feel pretty strongly it shouldn't be one person either. I wonder if they will (should) get the law involved. That is what the Charity Commission advised I do...because they (The Charity Commission) weren't going to do anything. I will send everything to the Charity Commission (as I did in 2018/9) so they are aware.

 

Distracted here --- I was wondering if they considered the optics --- NICE considered the evidence low quality --- how can they defend it as "medium"?
The Charity Commission - only read your post, but that might explain a sudden burst of being "reasonable"!

 

The latest from Catherine Spencer in reply to my email of 10 April - she's a bit stuck, it seems!

She doesn't know about the Charity Commission complaint, unless she picked it up from reading my blog posts (doubtful). I contacted the CC again yesterday with details of my refused request to withdraw the two Cochrane reviews in 2020, where there was no independent investigation (unless you count COPE, which I don't!), and also the recent complaint about Karla allowing a review with at least two serious errors which could lead to harm to patients to be published. Might as well keep them in the loop I guess.

Hi Caroline

Thanks for this – really helpful.

I am still working on how we best consider your complaint, including the need for impartiality.

Kind regards

Catherine

 

Having used the excuse of giving a veto to authors on retraction, that ship has sailed and sunk a long time ago.

 

maybe they want to try and rearrange the deckchairs anyway?

 

Keep going, this is important stuff to watch - all the aspects about how this is approached and decisions made says a lot about a lot, certainly at this stage, and it sounds like she is at least aware of that?

 

They've been rearranged so often there's no varnish left on the deck

 

Good that CC are looped in on evidence of timings regarding when their search for impartiality began - do they provide expected timeframes of the different parts of the process for any types of complaints?

 

If you mean the Charity Commission, there is no timeframe given as far as I know (or remember from last time). They won't enter correspondence until they have decided whether they will take it further or not. In the last case when I contacted them in 2018/9ish they said they looked at the stuff and decided they would "not to engage with the charity". When I questioned that, the risk assessment team seemed to take the approach (reading between the standard fob off type lines) that as Cochrane were not bringing the charity sector as a whole into disrepute (presumably as not many people in the outside world know or understand what they do and how they operate to produce their "trusted" evidence), they weren't bothered about investigating if beneficiaries were being harmed as I was alleging....or something... I don't know. It's frustrating, but I will plod on

 

I have just sent the following to pressoffice@cochrane.org, copied to Cochrane.IAG@gmail.com.

"Hello,

As it has been a month since your previous response, please can you advise me of any progress that you have made in that time.

Thanks in anticipation."


Additional note, I am still to receive a response to my original email from Cochrane.IAG@gmail.com; I received the same automatic message as last time to today's email.

 

Heard from the Charity Commission. Love this sentence "We appreciate that sometimes decisions made by charities may be unpopular with some interested parties".

They go on to say are only looking at risk to "anyone coming into contact with the charity" and "risk to the charity itself". Cochrane have just lost all its UK funding for being terminally crap at their job, so I think they did put themselves at risk over many things. But anyway.

The CC failed to mention the risk to the "beneficiaries" of the charity from the poor products (aka published reports) it produces, specifically, but unlikely to be limited to, the Exercise revewi. On the complaint form (https://forms.charitycommission.gov.uk/raising-concerns/) it clearly says it deals with risk of "serious harm to the people the charity helps" as well as risk to "anyone who comes into contact with the charity". But they have only mentioned the latter in their letter. I will write back and point that out, (again). I will ask them to spell out that they have also considered the serious harm to beneficiaries, which was the basis of my complaint.

 

So, that complaint was prior to NICE downgrading the "studies" on which it was based to "very low" or possibly just "low". Unfortunately GRADE does not have a level for "should never have eveb been funded, let alone published...."