Hello – I’m back from the MEGA PAG. It didn’t go too well. I’m afraid.
Yes, I know, you told me so…
I’m still trying to work out how to report what happened without falling foul of the confidentiality clause. In the meantime, here’s an account from Natalie Boulton, co-producer of the Voices From The Shadows film, who left at the same time as me. This also appears on Natalie’s Voices From The Shadows Facebook page:
Three members of the MEGA patient advisory group resigned last Friday 17th March – myself Natalie Boulton, ‘Spoonseeker’ and Jim Wilson. ‘Spoonseeker’ writes a well informed and thoughtful blog, I made the collaborative book ‘Lost Voices from a Hidden Illness’ and co-produced/directed the film ‘Voices from the Shadows’; an advocate for ME patients like my daughter and her friends. Jim is a former research physicist and computer scientist. He has a wide ranging professional experience in senior business management and of delivering projects in both direct management and board level oversight roles, which involved partnership in working across organisations and cultures. He is also a trustee or chair of several charities. The professional experience he brought to the PAG has been invaluable. Both he and I are carers for daughters ill with ME. Spoonseeker is himself a patient and also a carer for his wife who has ME. A very active member of a ME support group, he has had a long involvement with a wide range of patients and their experiences. We all took our support for, and participation in MEGA, very seriously. We expended an enormous amount of effort and time on it; committed to applying our varied expertise to the project in a constructive way. I think the other two will soon make their reasons for resigning public, in so far as they are permitted to by a confidentiality agreement. Keep an eye on Spoonseeker’s blog for their accounts. I restrict this account to my personal impressions and publicly available material.
I applied to join the MEGA PAG believing that the public specification for the patient advisory group was a serious commitment to ME patients and to PAG members – at least until a more comprehensive Terms of Reference was agreed with the PAG. I also believed that the information given to Forward ME by Prof Holgate, to allay concerns expressed by the Countess of Mar and ME charities about MEGA, could be depended on.
I now find, almost three months since the PAG was formed, that both this public commitment and Prof Holgate’s answers have turned out to be misleading. Furthermore, no terms of reference have been agreed, to enable the PAG to operate effectively, despite this being a priority, and the minutes from the only meeting held while I was a PAG member ( last December) have still not been confirmed or made public.
I am, therefore, concerned that patients and ME charity representatives have been misled. In my view, over the last three months, the PAG has not been permitted to carry out the functions publicly ascribed to it. As an advocate for severely ill ME patients this puts me in a difficult position. Members of the PAG have been working and studying incredibly hard, both individually and collectively, in order to be in the best and most informed position to assist the MEGA team who, as a group, have very little knowledge of ME/CFS. I believe we are all desperate for good quality, relevant research to be done on ME and ME/CFS, so I have found it intensely frustrating to find our efforts to engage thwarted at every step. I have not felt that the PI representing the MEGA researchers has a genuine wish for a meaningful engagement with the PAG, nor for the collaborative relationship many PAG members hoped for and have been working towards. Now, sadly, my impression is that the PAG was hastily appointed at the last minute as a cynical attempt to try to make bioresource bids look more appealing to funders and to reassure patients.
I have not found an honest and open environment for discussion between PAG and PI. At the only official PAG meeting before I resigned, it became clear that critical design issues for the MEGA project had already been decided upon and were non-negotiable: no meaningful discussion of these issues would be permitted. All further research by MEGA researchers, whether a broad ranging Genome Wide Association Study or more in-depth research, will depend on the samples collected for the MEGA biobank, so the selection and identification of patients is crucial, as Prof Holgate and others including Prof Davey Smith have pointed out.
At her recent inaugural lecture, the PI made clear her understanding of ME/CFS in children as being a very common condition, responding very positively to the behavioural management regimes found to be so flawed in adults. She also expressed grateful thanks for the assistance that she has received from Profs. Peter White and George Davey Smith over the last 10 years, with helping her win research funding. Peter White is the psychiatrist who led the PACE Trial. George Davey Smith is an excellent researcher, but says he knows nothing about ME/CFS, even after 10 years of being associated with CFS research as Bristol University. As a PAG member I have seen no evidence that the MEGA biobank PI is willing to allow those who have lived with and developed a more realistic understanding of the severe illness known as ME, to engage in meaningful discussion about the selection of patients and to listen to our concerns about the potential danger of particular groups being under-represented in the biobank and even in a GWAS.
ME has a long history of definitions and criteria being used in a very ‘creative’ manner.
I decided a couple of weeks ago that, as an advocate for those with severe and long lasting ME, I could no longer remain a PAG member in a project whose value to ME patients:
1. relies entirely on how a few significant terms – such as PEM – or ME/CFS – will be defined at some future date
2. where crucial decisions, which will impact on future options, were made without any in-depth discussion being permitted
3. where no working relationship or discussion has been allowed between the PAG and MEGA researchers.
Since impending resignations were known about, there seems to have been a frantic attempt to placate criticism from the PAG, but this does not restore my confidence in the overall MEGA biobank project.
There has been a history of legitimate patient concerns being dismissed as harassment and persecution, even when these concerns are raised at terrible cost to patients own health. I hope that researchers, patients, carers and ME charities will recognise the legitimacy of the serious concerns raised by the resigning PAG members, rather than dismissing them and relegating them to the ’persecution of brave researchers by nasty patients’ narrative.
7 thoughts on “Natalie Boulton – MEGA PAG”
So disappointing to hear that the PAG involvement process was not satisfactory and that, as a result, some of the group felt that withdrawing their expertise, experience and time investment was the best option, given the circumstances. This can’t have been an easy decision for any of you to make. But when your access issues seem to be disregarded and your expertise seems to be ignored, what options are left for you? Were you paid for your involvement (on a par with the medical professionals)?
The research model seems to work well when the research is commissioned by patient groups (Emily’s Entourage re Cystic Fibrosis being an excellent example). The CureParkinson’s Trust are developing linked trial models, which look good too. I’m also a fan of the team who are raising awareness and trialling treatments about/for haemochromatosis in the UK. If the ME/CFS researchers are not aware of these models of effective patient engagement my question is (from the position of a patient with a rare condition who gets consulted at every opportunity), why not?
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Still working (rather slowly) on my list of reasons for leaving but the nub of the matter seems to me that the PAG was hyped up to reassure concerned patients that someone would be fighting their corner so the MEGA project wouldn’t be as bad as they feared, whereas all they really had in mind for us was to answer some arguably important but relatively minor questions and tick the box marked ‘patient involvement’. It never seemed to occur to them that anyone would expect them to do what they said they would do on the website.
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Thank you for the update. I suspected the sudden silence from MEGA was bad news. I hope the PAG members recover quickly from their experience.
I now wish I had been well enough to apply for the PAG. I would’ve spilled the beans and invited Crawley to sue. Think of the publicity! “Researchers Sue Patient Advisors” would be a great headline for us.
Perhaps even more important, civil actions allow defendants to develop a defense through the legal process of discovery. This could potentially uncover the legal evidence we need to put these people out of business, and maybe in jail. I think Sir Simon would look dashing in stripes.
I suspect they wouldn’t sue but I guess, when push come to shove, I don’t like to give my word and then go back on it – even though some people, mentioning no names, don’t seem to think that’s a problem.
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Such a shame, but I think many of us suspected that the whole PAG was all a little too late, just as you did. Once more patients’ concerns have been dismissed with what appears to be an astonishingly patronising attitude – I hope you manage to find a way around the confidentiality clause to explain what went wrong. In the meantime I hope you’re not too dreadfully disappointed with what’s happened; you gave your time and precious energy in good faith in a genuine attempt to stand up for us (and for good science!) so I hope you don’t feel that you’ve let anyone down because you certainly haven’t. All the best to you x
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Thanks for your kind words – which I shall pass on to Natalie – and indeed thanks to everyone else who has been supportive about my involvement in the PAG, here and in various FB & Twitter threads etc. I was wondering if some might not be happy about me ‘working with the dark side’ or however you like to describe it, but I’ve received only kind encouragment, strange from a group of people who are supposed to be so ‘difficult’ and even ‘borderline sociopathic’, isn’t it?
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Never crossed my mind about ‘working with the dark side’. Quite the opposite in fact. I didn’t want MEGA to even go ahead, but given that it is, I thought it would be essential to have trustworthy patients involved so they could see for themselves the truth about how exactly MEGA is being run.
From what you say it seems our initial fears were well founded. I’m sorry it was such a disappointing and perhaps distressing exercise for you, but only have gratitude for your attempts to see that justice is done. We are all well aware of just how much this must have taken out of you.
In my opinion, your resignations only serve to strengthen my impression that MEGA is little more than a career boosting exercise for a small but sadly all too influential group of uncaring empire builders.
Thank you (all) for what you have said and done to try and help our cause.