@Hilda Bastian, thank you for reading our posts.
There are two particular aspects of your report and this discussion that are keeping me awake at night:
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1. The appointment of a patient to be a member of the review author panel.
I thought you were appointed to ensure patients' expertise on the research under review is fully included as part of the writing of the new review. I thought that meant you would do your best to ensure expert patients/carers were included as review authors. I thought that logically meant you would make recommendations on the basis of a track record of understanding of the research and and an appropriate level of expertise to make a meaningful contribution to the review process.
I assumed that your decision process on who to recommend to sit on the review writing panel would include some combination of an open application process with the usual trappings of role decription, required skills, public announcement and a closing date, alongside a search of published literature on the subject to find patient/carer authors who might fit the role and could be encouraged to apply.
What I have been shocked by is the idea that a trawl by you of the internet for a non activist, possibly who also met some secret criteria on their opinions about exercise (different from that of 'activists?), was considered the appropriate method of finding the sole patient to join the review writing panel. Can you see how very odd (to put it politely) that looks?
As you are well aware, a systematic review of the research on a treatment, published in the name of a government funded high profile organisation like Cochrane, has surely to be seen to be carried out by a panel of individuals with the highest possible level of relevant expertise for the job. How on earth does being a 'non activist' patient specially qualify someone for this task?
What particular contribution is a non-activist expected to make to the detailed examination of data that could not be fulfilled by an expert patient who also happens to have taken part in some activism? Does attending a silent vigil in a wheelchair disqualify someone? Or perhaps tweeting about the flaws in some research, or discussing it on a forum - is that a disqualification?
I am lost. Even if my assumptions about an open application process were wrong, and that's not how Cochrane works, surely they look for appropriate knowledge and expertise in their review authors.
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2. 'Pounding'
You expressed, earlier on this thread, empathy when I said the decades of stigma, neglect and harmful medical advice many of us have suffered means some of us reach the stage of despair, that sometimes comes out as anger, when we see Cochrane being so unwilling to take seriously the reasons the current reviews of CFS treatments are unsound and harmful, and to take swift action to withdraw the review once the flaws were raised years ago by expert patients.
I find it very hard to square that empathy with your accusation made, denied, and then repeated on this thread, of unspecified patient/carer 'activists' 'pounding' either Cochrane or you or the BPS researchers - I've lost track of which group you thought was under attack in an unreasonable and counterproductive way.
I thought better of you than that. Surely you are not so naive as to buy into the BPS cabal's use of smearing tactics against patients as a way of deflecting criticism of their research. So why the innuendo and refusal to specify what you mean? By not specifying actions you deem unacceptable, you accuse us all.
I feel very unnerved by this. Do you mean me? Has my, I think wholly justified, anger at Cochrane, or my criticisms of the opacity of the appointment process been seen as 'pounding'? You seemed to suggest this thread discussion includes some posts that are in some way problematic.
I can see it's a pain when you thought you were acting reasonably to have some of your actions called into question by some members of the 'consumer' group you have been appointed by Cochrane to communicate with, and to be faced with a flood of posts questioning some of your decisions. I accept that you are under no obligation to respond here and now to the concerns we raise.
But please, to help us all, to relieve the distress of those who feel accused, and to clear yourself of accusations of buying into the harassment narrative, please can you either be more specific about what you are referring to, or alternatively, retract the accusations of 'pounding'.
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It would be good to clear the air on these issues so we can all return to focusing on the important and valuable role the IAG, and the good people on it, can play in the review, and the part we can play in feeding into that process when invited, our comments on the protocol and anything we are asked to participate in.
I am sure we all want to make a constructive contribution, as we did to the NICE guideline draft consultation. I personally spent six weeks solidly working on our forum submission to NICE (with others) to the detriment of my health.
This matters enormously to us all. I hope we can work constructively together on it.
Edited: typo.
