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

I think you are right, but I suspect the wording is deliberately vague in order to give readers the false impression that they have seriously addressed more recently the issues we raised, as the conclusion of of the editorial process around the 2019 redraft was that it was grossly inadequate and needed to be urgently superseded by an entirely new process, hence the Independent Advisory Group.

 

One aspect of the manner in which the author of this letter from Cochrane addresses us here is that it seems the author cannot afford the ordinary pleasantries of written correspondence.

On the one hand I think this may be taken as a mask off moment. Look at who we really are and see that you and yours are no match for me and mine. See our might and tremble.

Do not think that your type can exceed your station. Your attempt to medal in your superiors business is intolerable. Your ilk are not to be afforded the conventions of polite address. We do not owe you a single drop of respect.

Cochrane dismiss, via written word or unbroken silence the subjects of their work. Year upon year.

By this history and by this latest much belated letter from the Cochrane administration, might we guess that they are insulted?

How after all these years do we still have the temerity to question their establishments actions and inaction?

What right do we have to seek authority over our own lives?

Who do we think we are?
Who do we think they are?

Perhaps this petulant and inadequate missive is intended to remind us, to reinforce the establishment view on these questions.

Perhaps in the face of a wider issue of reputation decline and economic uncertainty on the future of Cochrane the attitude struck in this communication with us their subjects, is intended along with its attempt to issue a final act of dismissal “the matter is closed” to offer themselves reassurance, that they do actually still possess their self granted authority to make such a decree. A display of naked dominance.

I’ve become aware that in a society such as this one the ability to compromise is important. Well, along with the unspoken yet unmistakable presence of a caveat. One that informs us all that this is to apply to the underdog and the underdog only.

So, as the underdog in this scenario let me take a moment to acknowledge that yes between us, so far, they really are the dominant entity here. I with agree them in this assessment. I therefore understand the rationale of their decision to speak to us in a manner of which they would not speak to those that they consider their own equals. Certainly they surely would not reply to a question from an interviewer for a promotion to sort after professional position in such a tone.

Indeed Cochrane has been mauling us in this pit, for years, to fatal effect. We have lost many. We continue to fall to the ravages of their dominance. They have authority over our existence.

Cochrane maintain, for the moment, access to the institutional keyboard, with which they have chosen to deny us reprieve.

I hope this acknowledgement from below offers Cochrane a little of reassurance they seek.


To conclude we have established ability as expert compromisers, permit us to elucidate upon other aspects of our position, as long standing members of the underdog or subject class. The matter remains open while your jaws clamp our necks and beyond, our decision.

 

Maybe…
My feeling is that the standard office response would need to be more polite than this one is, otherwise office staff might need to re trained or replaced. Or perhaps they really are all this inadequate at communicating with others and that is a contributing factor for their financial difficulties.

 

Either way an apology is due us.

 

Umm. I noticed that they used Dear and kind regards but what else could they do?
Certainly made up for this by a failure to sign it, along with the causal dismissal of the content. They had been written to on the subject of other human beings health and welfare and your reference to previous failures of communication.

When you contemplate the subject matter their reply only looks worse and worse.

Besides which who exactly is it informing us that the matter is closed?

 

Politeness/formality can be a very English way of showing aggression or trying to assert dominance. Also to address a message to a named person rather than the organisation, but then to fail to identify the sender by name only by organisation is either a play for dominance or an attempt to avoid taking responsibility.

I am not sure where the Editor in Chief’s office is based, but trying to find this out I was struck by the irony of Cochrane’s description of Karla Soares-Weiser:

though of course Cochrane may not count us amongst their ‘users’.

 

Yes indeed it is. You’re quite right. I’d go for two for one deal, a play for dominance and an avoidance of responsibility.

 

They could have just replied with a poop emoji. Same thing, really.

 

I'm pretty sure they always mean institutions here. Patients are not expected to use the reviews, only professionals are. We are the product, essentially.

 

This reply, in image form:

 

It is.

 

It is.

 

We are.

 

Anyone willing to graciously offer their expertise for free? With a panel of knowledgeable patients you could probably hammer this thing out in a matter of weeks. Or just, you know, copy from NICE.

 

It seems to me that if the Independent Advisory Group are now self-managing then it is completely within their power to put out a statement that might go someway towards reassuring the community.

Or if they feel that is not possible to do as a group then those members who are part of the community could actually let us know why they think a process, that looks to us an absolute disaster, is still viable.