I reproduce here my side (two emails) of an exchange with a member of Phoenix Rising CFS forum from 2012, after a group had published 'an analysis' (though intially 'the analysis') of PACE. I warned them in advance (in 2012) that I would be publishing my own emails to them. However I have redacted their name to preserve anonymity. I believe this exchange demonstrates some key issues around how my work in the area of PACE and on psychogenic explanations for M.E. and other impairments (including the 'biopsychosocial model') has been subject to academic and other forms of erasure* for some time, sadly.
*My grateful thanks to Curls McBobbins (@zaranosaur on Twitter) who has very sagely and succinctly reminded me that "academic erasure is a thing", and the higher risk of it happening to already marginalised academics (as I do indeed consider myself, for various reasons of which some readers will be aware). I'd been struggling to articulate what has been happening to me: her wise words have helped more than she might know.
3 May 2012:
Dear - ,
I am writing because you did invite comments on the above document.
What I am about to write may discomfit you, and I would first like to say I am not intending to write in any hostility, although the points I make here will be necessarily critical.
I should say immediately in the interests of transparency that I have done quite a lot of work over the years on the way psychiatrists have EXCLUDED people with neurological deficits (associated with the neurological illness myalgic encephalomyelitis) from their research cohorts. I have also been a vocal and analytical critic of the PACE trial since its inception. I did try and explain the issues about the criteria to others on the threads about the PACE trial that evolved on Phoenix Rising, but with the honourable exception of one person, was largely ignored.
I am highly concerned that this document may be promoted, especially on PR, as a comprehensive overview of the issues around the PACE trial, when it is nothing of the sort (I note with dismay you claim to have 'done the analysis' - my italics). This would be to the immense detriment to the ME community, and to those of us (even non-ME but supporters like myself) who have worked extremely hard on identifying key problems with PACE since before the trial started in 2004, and the issues we have rightly raised. By claiming or implying it is definitive, you have dismissed serious key issues around PACE that have enormous adverse implications for ME sufferers and their safety, a key point I have raised in my complaint to the Lancet, and which I publicised on the relevant threads on PR.
One major problem with this is the lack of references to the work of others on PACE. There are a number of references I can give you. Just three are here from myself and from Jane Bryant of the One Click Group (when I was working with her), but these are not exhaustive, either of our respective works or of other people:
I also cannot see references either to my own complaint correspondence, nor Malcolm Hooper's extensive work in this area. At the very least you should have provided a bibliography of the work others have done, especially as your document implies this is a definitive analysis. Obviously this implication is not correct. If you acknowledge it is not then you need to publicise that, and a bibliography is the best way to do this.
One key area in which any implication this is a definitive analysis is particularly problematic is around the issue of the criteria used in PACE. Your document leaves out key issues and is discrepant in some places:
1. A key problem is that my frequently stated point that the Oxford Criteria allowed EXCLUSION of the 38% of clinic attendees possibly BECAUSE they have Myalgic Encephalomyelitis (and neurological deficits associated with such), has been ignored. I did try and explain this at some length to people on the PR threads, and show why this is a possibility that needs exploring by scientists (I'm presuming your document is intended to raise at least some scientific interest in the concerns raised by the ME community and its supporters?) but was largely ignored or dismissed.
2. You have also here - incorrectly - discussed FUKUDA, when in fact the PACE trial used REEVES et al 2003 (different to Reeves 2005), which is actually MORE EXPLICITLY EXCLUSIONARY than Fukuda, although it does look like White et al CHANGED their criteria to Reeves et al 2003 FROM Fukuda at some point in the trial. Though it should also be noted Fukuda and London were NOT EVEN INCLUDED in the PACE Trial Identifier leaked by ONE CLICK in 2004, and appear to have been added in response to criticisms about ignoring the Canadian Criteria - which myself and Jane Bryant raised publicly, as you will see from the above links.
3. You have also not addressed the discrepancies about the LONDON criteria - or that White et all used a 'version' of 'London' of their own making, that excluded people with signs of neurological deficits. In fact, you have not even discussed the discrepancies about the London criteria, period, even before White et al bastardized it to suit themselves.
I should make it quite clear that this is not me being 'huffy' because I've been ignored. My ego is not bruised. But I am frustrated that the key issues I've raised, which are vital to an effective critique of PACE, have been ignored, and the adverse effects that will have on advocacy on this issue and protection of the patient community from the adverse effects of PACE and its promotion. One of the biggest problems this community faces is when people refuse to acknowledge or co-operate with knowledgable others in the community, for reasons of petty prickliness, pomposity, sometimes sexism or classism, or whatever. Even when I've had disagreements with people, if there are areas we can work together, or if someone is being treated unfairly, I will still co-operate and support wherever possible, because cutting one's nose off to spite one's face is not conducive to good advocacy strategy. People should have been working together on this - and I was one of those whose concerns and knowledge (and indeed, even my own complaint to the Lancet) have been largely ignored on the Phoenix Rising forums. While the problems of internet interaction is one thing (and there are a lot of problems in this area on the Phoenix Rising forums), it does not excuse the lack of attention to these important issues that I have raised here.
I hope that you will take my honest and reasonable concerns here on board in the spirit they have been sent, refrain from shooting the messenger, and seek instead to present a bibliography of the work others have done in this area, and publicly acknowledge, in the document itself, that your own analysis in this document is inevitably not comprehensive or definitive, because of the work named others have done. I can provide you with a reasonably wide comprehensive bibliography with links (though even this may not be exhaustive). I would also suggest you remove the term 'the analysis' and replace it with 'an analysis'.
Please do not hesitate to contact me if you need any further clarification. I should let you know I am publicising this email. you have my permission to share this email with others, but I ask it be done so in its entirety, so any part of it is not at risk of being taken out of context.
14 Mary 2012:
Thank you very much for your reply. I am also very flattered that you have indirectly described me as one of the 'heavyweights' with regard to the knowledge base on PACE - although I note you've referred to me as a 'them', which confused me somewhat at first.
However, I am not reassured by your response for a number of reasons:
1. The issue around the criteria is crucial, because you have ignored the way four criteria (Oxford, a bastardised 'London', the Reeves et al 2003 change to Fukuda, and the NICE criteria) excluded ME patients from the PACE trial, and the various discrepancies around those criteria. Anyone reading your document would believe Oxford were the only criteria used in PACE, and that the excluded 38% DO NOT represent ME patients, when this cannot be said to be the case. At the very least you should be seeking to correct this, because anyone reading your document will not be getting the correct information and may take further action (including advocacy) based on inaccurate information. Currently any psychiatrist wishing to poo-poo your objection to Oxford would be able to do so very easily, because of your lack of accuracy or clarity about the way the various criteria (Oxford, a bastardised 'London', the Reeves et al 2003 change to Fukuda, and the NICE criteria) were used to exclude patients from the research. You also fail to mention Reeves 2003, a crucial 'clarifier' to Fukuda, and the various changes to criteria that were made throughout the PACE trial (at least as important as changes to outcome measures). The lack of clarification on the criteria issue also renders your discussion about the pre-excluded 38% of patients, and the patients included, somewhat confusing.
2. Your 'primary conclusions' are actually wide ranging and authoritative sounding, but you are making claims based on incomplete evidence, particularly in the section on criteria. That is your choice, but in doing so you are doing a disservice to the community itself, other advocates, and any scientists or other parties coming across your work but who are not aware of the key analysis carried out elsewhere. If you had focused on the smaller area of the outcome measures, where your thread was most productive, and acknowledged there were other key issues being looked at elsewhere, I would not have seen this paper as a problem. As you have made wide-ranging conclusions without acknowledging they should not be considered as definitive, readers not aware of the prior work of others will erroneously believe that these are the only crucial points about PACE, when they are not. They are merely SOME points about PACE (and some of them are not quite correct).
3. At the very least, you should be acknowledging that there is other analytical work being done on PACE by people like myself and Professor Hooper (and mention our respective complaints), if you are determined not to provide a short bibliography of our work. This would allow the reader to understand that your 'middle ground' is not definitive, and will prevent any misapprehension on this issue.
Nevertheless, your decision not to include any bibliography is highly problematic, because the vast majority of discussion about the criteria was actually carried out by myself on the large thread and some other related threads on PR. If this were an academic paper, you would be dangerously close to plagiarism, and to prevent this you would be required to give a bibliography of others work on the subject, especially as you claim to have known about them in advance (as your compliment about the 'heavyweights' implies).
4. I am concerned that, however modestly you regard your document, it will be presented on Phoenix Rising as a definitive analysis of PACE, to the exclusion of vital points made elsewhere by myself and Professor Hooper. PR has become extremely self-promoting, and I can see this problem occurring. I cannot see how you can reassure me otherwise, frankly.
5. I do acknowledge you may not be aware of this, but, it is important that you understand that I was being heavily moderated and also subject to various bans over on PR after protesting against mistreatment of me by others, or defending myself against them after not being protected by moderators. At one point I was falsely accused of threatening the Royal Family. While the problems of PR are neither here nor there as far as you are concerned, and I am certainly not seeking any sympathy from yourself, you should be made aware that I had no awareness that you had proposed any such project. Today is the first time I have been made aware of it. In any case, by not including or acknowledging my work which was actually on this thread (and others), you have ignored it. It was also striking how little people engaged with me on the criteria issue during my time on that thread, when it was clear I had some very specific information that I was imparting to people.
6. I have to say that I did not know that you have been involved in any major critiques of PACE. This would be because you have not made them public? Could you perhaps enlighten me as to which critiques you have been involved in? I feel that this comment of yours is somewhat accusatory. I could not be aware of anything you have been involved in if you did not make it public. I have traditionally shared my work on PACE with the ME community, and indeed shared my work on my complaint, and updates, on your thread, and others, until I was banned from PR.
7. I am glad that you acknowledge that we need to find a way to show why the psychogenic model of ME is incorrect. I don't understand why that would 'bother' you though. I thoroughly agree a multi-pronged approach is needed, but this is EXACTLY why I have needed to write to you about the problems of your document. A multi-pronged approach needs to be done in such a way that others' approaches - where on the 'same side' - are not damaged. If you do not acknowledge the limitations of your report, it will NOT 'engender further interest' very well at all, but could instead proscribe it. This means that key work, that can be used to ultimately show why the psychogenic model is flawed, could be prevented from seeing the light of day following the problems of PACE, because people have been misled into believing that your incomplete (and on the issue of criteria, currently not correct) report is complete and definitive. When I say misled, I do not mean deliberately. I believe that the high potential of your document to mislead people (because I unfortunately do believe this is the case) is because of error only.
However, it really needs more than the changing of one word to correct these problems. A short disclaimer about this not being definitive and complete, and perhaps a short mention of others' work (Hoopers, my own, as just two examples, and where they differ to yours) would not be hard to do, if a short bibliography of links is impossible. This will not in any way compromise your intention to be 'accessible', but will point to the necessarily deeper analyses which are vital tools, as you acknowledge, in the work dismantling the problems caused by PACE and the psychogenic model of ME. I also presume that your desire to be 'more accessible' would not mean you were prepared to be inaccurate, and therefore you understand the need to correct the inaccuracies in your document around the criteria used in the PACE study.
There is much more that I could write about my concerns about your claims to have achieved certain things. But it is really not my intention to attack your paper, or damage any specific points that fall within the remit that you and your colleagues on that thread have undertaken, and that you wish to take ownership of. Not at all. My concern is to ensure you have not damaged the work of others in this field (and that includes my work), which, so far, your document is in danger of doing. A small amount of work will rectify that, as I have shown.
If you cannot see your way to doing this, I will need to point out the problems wherever I see this document being touted as a definitive analysis of the PACE trial, unfortunately. Feel free to reply to me 'officially', but please bear in mind that, as I have no 'right of reply' on Phoenix Rising, I will have to publicise any objections I may have (such as those above) in other places, and explain that I have no 'right of reply' on PR.
I am hoping that you will have some understanding of the importance of what I have endeavoured to explain to you, and that my specific concerns are reasonable, and will take the small amount of work needed to rectify these problems. If I had my way I would re-write the whole way you have described the criteria issue. However I realise this is unlikely to be acceptable.