My Perspective on the MEGA PAG

At long last, I’ve submitted my list of reasons for resigning from the MEGA patient advisory group to the MEGA team, the other PAG members and a few other interested parties. I would like to be able to share it in full here but unfortunately the confidentiality agreement makes that impossible. So I shall stay with it as long as I can and then add in a few extra comments exclusive to this blog. Well, OK, quite a lot of extra comments…
Here we go…
I joined the PAG in the expectation that we would be able to make a substantial contribution to the design of the MEGA project, in particular the patient cohort selection, about which there had been considerable concern in both the ME/CFS research and patient communities. Recognition and  understanding of ME/CFS has been greatly hindered for many years by the muddled and inconsistent use of a host of diagnostic criteria. This problem was acknowledged by the recent US National Institutes of Health ‘Pathways to Prevention’ Report  and highlighted in a recent paper from the Cure ME UK Biobank team. It is recognised that broad criteria are needed for GWAS, but nonetheless it is of course extremely important  to select the right patients for the MEGA biobank, particularly as they might be used for research worldwide for many years to come. There has been particular concern because the MEGA team Principal Investigator, though regarded as an ME/CFS expert by her close colleagues, did not – to judge from her previous work – appear to have taken on board the importance of such distinctions.
Prior to the formation of the PAG, patient concern was to some extent allayed by assurances about the extensive role of the patient advisory group, both on the MEGA website and in person by Prof Holgate when he addressed the Forward ME Group at the House of Lords.
The MEGA website announced that provisions would be made for the PAG as follows:
We will:
  • use technology to make it as easy as possible to participate, given the limitations of the illness
  • ensure you are clear about your role and responsibilities
  • always treat you with respect and compassion
  • provide you with support that fits with your role and your needs as well as ours
  • always value the role you play in our team and the contribution you make to our work
  • listen to, and act on, feedback that you give to us outlining what we did/didn’t do and why
  • ensure you have the information you need to participate in the wider MEGA team effectively.
At his meeting with Forward ME at the House of Lords in December, Prof Holgate further explained:
  • the selection of patients would not be looked into until the PAG had been convened
  • the PAG would need to get together with the MEGA team to resolve the many queries that surrounded the condition of ME/CFS patients.
  • the PAG’ s method of working would be a matter for the PAG to decide. Each patient representative would be an equal of every other member of the MEGA team
When asked about the inclusion of the full spectrum of patients in samples for the study, Prof Holgate said:
  • this was a discussion the patient representatives would need to have with the scientists
The MEGA website summarised the role of the PAG as follows: “to provide people with ME/CFS, their carers, and people with an interest in ME/CFS, with a full voice in advising and collaborating with the MEGA team to inform all stages of the MEGA study to better understand the biology of ME/CFS. Advisory Group members are asked to contribute to the MEGA study by:
  • actively engaging in the design of the MEGA study and to be participants in its conduct
  • identifying any potential practical issues for participants, questions, gaps or concerns about the study and to comment on study documents and procedures
  • contributing to, and informing, the planning process for securing funding, recruiting participants and disseminating results.”
Sadly, my experience was that the vast majority of these numerous assurances were ill-founded. The reality of the PAG differed greatly from what had been promised.
In the report I submitted, I went on to give examples of numerous ways in which the reality of the PAG fell short of what had been promised, but unfortunately I’m not able to share them here due to the confidentiality agreement. What I can do instead, I think, is to bring in my experience of patient involvement in research into another neurological condition I have. This has involved answering questions about how far people would be prepared to travel to undergo tests, and whether they would be prepared to go without their medication for part of the day while doing so, that sort of thing. In other words answering important but relatively mundane questions about patient participation in the practice of research.
In our discussions amongst ourselves in the PAG, we referred to this as working in a ‘consultative’ capacity, whereby the group would be approached to answer such questions as and when they were needed, an important role yet a very different one from that of collaboration, which was what we had been given the impression would be required from us for MEGA. At the time I left the PAG, some two and a half months in, it was still not clear which of these roles we were supposed to fulfil. We had certainly been told we would be collaborating, more specifically we were to be provided with “a full voice in advising and collaborating with the MEGA team to inform all stages of the MEGA study”. The trouble was that to judge from our experience so far we were really only wanted in a consultative capacity. “To decide on the best colour for the envelopes,” was how I liked to describe it. Which was a joke – but admittedly not all that funny.
Though things were much more complicated than I have been able to describe, it was this uncertainty about the role of the PAG and the failure to get agreement on terms of reference which might have defined it, together with frustration about having such little scope for input into the project, which led to my resignation. Our attempts to get more clarity led to a souring of the atmosphere and it was hard to see how progress could be made. Far from being welcome partners in the development of MEGA, we seemed to be barely tolerated. Three of us felt that the time had come to resign.
My best guess about what happened is that we were always intended to be consultative but when patients protested so loudly about the plans for MEGA as originally announced, the PAG was seized upon as a way to quieten us down: “Don’t worry – the PAG will be there to make sure it’s all done properly!” Prof Holgate even went so far as to tell Forward ME that “PAG members would be the equal of every other member of the MEGA team” which I have to say struck me at the time as neither likely nor even desirable. Personally speaking, as someone who knows next to nothing about –omics, I wouldn’t expect to have the same authority as an –omics scientist on an –omics research project. But I suppose when your mindset is simply to say whatever it takes to get the troublesome patients off your back, you don’t stop to think too much about accuracy.
You’d have thought, though, that they would have had a plan to deal with the situation when the PAG turned up and – surprise, surprise – expected to have, if not the impressive powers they had been promised, at least some say in the matter. Wasn’t it reasonable for us to believe what we (and Forward ME) had been told?
Except perhaps, now I think about it, there was a plan to deal with the situation: to ignore the PAG until the more troublesome members resigned in frustration then turn on the charm with the rest.
So maybe it’s me that hasn’t thought this through…
But I can’t help wondering how the Forward ME representatives must feel about being given such a misleading impression of how things would be for the PAG? When they asked all those questions of Prof Holgate at the House of Lords, would they not have expected a higher degree of accuracy in the replies? Or are we in a situation where anyone in power can say  whatever they like, regardless of the facts? While patients are cast as troublemakers however much truth they have on their side…
Anyway, what happens next?
People have been asking if more resignations from the PAG are likely. My impression at the time was that others were considering it, but now I’m on the outside with everyone else, I don’t really know. According to the latest update on the MEGA website, “enthusiasm among PAG members is high” and since our departure “things have really picked up and are starting to fly”. If, as the website also reports, the PAG really had “substantial input” into the bid then things have changed a great deal for the better. If I’d known I was holding things back so much, I’d have gone before…
After the mistaken impression previously given about the role of the PAG, however, I hope I will be forgiven if I don’t entirely trust the MEGA website. The recent update reported that three of us had left the PAG and that our “ reasons for leaving have been taken on board”. This was particularly surprising as, at the time that update appeared, two of us hadn’t yet submitted our reasons for leaving. The update also stressed the intention that MEGA will apply for additional funding to include samples from the severely affected and that PEM will be a prerequisite for inclusion in the study. All of this, the update announced, had been agreed with the PAG. Well, OK, but both these strategies had already evolved before the PAG was even formed. They could hardly be described as a breakthrough now. If they had found a way to include the severely affected in the initial bid, then that would be news.
On the other hand, the update does at least acknowledge that those affected long term (who may not necessarily be severe) must also be included and it appears there has been some discussion of categorisation of samples. It is not much to go on but perhaps things are taking a turn for the better. It is not before time.
I certainly felt that the PAG had a great deal of expertise that was being wasted till now. There are some good people still in the group and I hope they are finally getting a chance to be heard. I’m sorry if my departure has increased the load upon them. I wish them all the best in their efforts to make their mark on the study. It is always hard to be sure of the root of things and perhaps the previous shortcomings of the MEGA/PAG relationship were due to oversight and circumstance rather than intent. Perhaps it is not too late for things to change.
And yet….
I’ve been torn in writing this post because I want to support my friends that remain in the PAG in their efforts to make MEGA better. I’m sure they will give it all they have but the honest truth is I don’t share their optimism. If I did, I suppose, I wouldn’t have resigned from the PAG. If things have changed for the PAG, I suspect it has more to do with spin than substance. I have to judge the study from my own experience, not from a single upbeat blog post. I have to look at the Principal Investigator, her previous work, the gulf between the promises and my experience of the PAG, the feeling of being played along just enough to keep us in tow. I think patients and informed professionals are right to express continued concern about the study. I have feared all along that it is likely to hinder rather than help our understanding of ME because of the way the patients are chosen and I’m afraid I have seen nothing to change my mind.
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14 thoughts on “My Perspective on the MEGA PAG

  1. “things have really picked up and are starting to fly”.

    Yup. Straight into a brick wall. Other potential funders will notice that Wellcome has rejected their application. This is a likely fatal blow to MEGA.

    Meanwhile Wellcome has bestowed blessings on the ME Association’s biobank. [1] Is it possible that someone at Wellcome is finally waking up to the scandal around our illness? They are not likely to fund two competing biobanks focused on the same illness.

    [1] http://www.meassociation.org.uk/2017/04/uk-mecfs-biobank-clears-first-hurdle-in-major-bid-to-secure-outside-funding-4-april-2017/

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    1. Yes, it’s great that the Cure ME biobank got through to the next round of funding. It would be interesting to know why MEGA got declined. Apparently no feedback was given. It would be nice to think that the funders are starting to understand the realities of the situation.

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  2. Well done for trying against the odds anyway. :/

    I feel let down, but resigned to the fact, that so many researchers and long established charities like MEA will always follow the money rather than the principles. If they stuck to them, pseudoscientists like the PI would never get to be in charge of funding for research into an illness they fundamentally do not understand, and progress might be made at long last.

    Let’s hope Wellcome reads beyond the hype before deciding on the next application. I would much rather see a rival group set up to bid for these funds than let them go to MEGA.

    Liked by 1 person

    1. I don’t think it is fair to suggest that the MEA is chasing dollars and fame. Dr Shepherd has worked his fingers to the bone to help patients, in addition to his being a patient himself. I have great admiration and respect for his work.

      Yes I think they should resign from the phony CMRC but that is a policy disagreement about the best way forward. But I never doubt for a second that the MEA has the same goals as every patient: effective treatment as soon as possible, and proper social support until recovery.

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      1. I too have a high regard for Dr Shepherd, even though I don’t always agree with him. It’s important to realise, though, that Dr S is not synonymous with the ME Association. Ultimately it is the board of trustees that makes the decisions and they may not necessarily agree with Dr Shepherd. I’m starting to think that these trustees are a bit of a problem – in general, I mean, I’m not just talking about the MEA. I don’t mean to criticise any individuals and I’m sure some trustees are doing a wonderful job, but it seems to be the case that they’re chosen on business and accounting experience rather than knowledge of ME and some of them seem to have a number of trusteeships ‘in their portfolio’. You can imagine such a person thinking they’re doing a good job without understanding the complexities of our particular situation. And I would guess that such a person would have confidence in ‘the establishment’, perhaps supporting doctors rather than what they might see as troublesome patients.

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    2. However laudable the aims of organisations are, they seem to reach a stage where their own existence becomes their most important consideration, even if that no longer coincides with their stated aims. A lot of people have been convinced for some time that Action for ME has reached that stage and after the experience of MEGA I’m afraid that I now share that opinion. The ME Association is in danger of going the same way, I fear, though for the time being at least I continue to support them – and they themselves are giving support to the Cure ME biobank, which I believe will be a worthy recipient of the Wellcome grant. I wish them success on the next stage of the application…

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      1. Have you read ‘Who’s Reality Counts: Putting the First Last’?
        I say this because you have more or less stated the thesis of the first half of the book–the rest is examples of how international development projects usually fail.
        The book gives a very good account of the way organisations are fated to become more concerned with their own continuation than with solving the problems they were formed to address. I read it a long time ago, and am sorry to say that this has proved to be true of every, or nearly every, org I’ve been associated with. The goal of all charities ought to be to succeed and disband as soon as possible. How many, I wonder, would actually conceive of that?

        Pleased to find you can get the book as a free pdf now. Everyone involved in an organisation should read the first half at least:

        https://www.google.co.uk/url?q=http://staff.washington.edu/jhannah/geog335aut07/readings/Chambers%2520-%2520WhoseReality%2520Ch1%262.pdf&sa=U&ved=0ahUKEwi4vdutm5PTAhWCJMAKHbzcAP4QFggLMAA&usg=AFQjCNEwaDWa-rbAX8dsG2msn6v5yZfszQ

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  3. From my limited observation of PAGs they seem to work best when a model from a previously productive PAG process is used as a baseline for the process and then added to as appropriate. IE the PAG group members are involved from the off with the design of the roles and responsibilities, level and type of engagement and the channels of communication they need to ensure that their time is used productively. Good to be told you’d be treated with ‘dignity and compassion’ but shouldn’t that have been a given? It certainly doesn’t replace strategic planning.
    Maybe the MEGA bods did use a template (I think Mind/Scope may have some good ones) for this PAG, maybe they didn’t, but what seems to have been lacking is independent facilitation. Providing a ‘go between’ (or two) who are not involved on either side, but act as a liaison point, might work well in the future. Especially if the facilitators have been involved in Patient/Industry negotiations/consultations before, so have experience of the issues that can arise.
    I’m looking for a silver lining … whatever the outcome of your decision and the PAG, I doubt we’ll be seeing the, erm, negative and emotionally-charged, language that has been used about patients in the past (what was it, something about ‘trouble makers’??) used in any report about the PAG process. But going through all this better have a more positive result than researchers minding their language about patients.

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  4. Action for ME were in there, supposedly supporting the PAG, though to be honest it felt like they were supporting Esther Crawley. I really don’t think that AfME are on the side of patients any more, nor do I think the phrase ‘trouble makers’ has fallen out of the vocabulary yet. We’ll get there some day, but I think there’s a lot of preconceptions to strip away first.

    Liked by 1 person

    1. I see where some folks now call them Inaction For ME. It seems like they have not been on the side of patients for many years. I expect that informed patients are fleeing Inaction For ME in droves. But have no fear. Grant junkies always know where to get the next fix.

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      1. Yes, it’s sometimes hard to see how Action for ME keeps their membership up now they seem to be so firmly in bed with the BPS lobby, but I guess it’s because the NHS clinics recommend them and most of their patients don’t know any better. The ME Association and other patient groups are on the internet of course, but it’s amazing how many people don’t know how to use Google.

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      2. I suppose that, if you ally your charity with the groups least likely to find a cure, you get to carry on a lot longer, and can continue getting advertising revenue from all the glossy supplements ads…

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  5. I hate to say it, but my feelings regarding Prof SH and his modus operandi seem completely justified earlier in this debate; what I originally said and suggested was that it is a case of,
    “I didn’t get where I am today…”……..-

    In true Reggie Perrin Style…check it out for a bit of fun!

    http://www.leonardrossiter.com/reginaldperrin/CJisms.html
    This page features the sayings and catchphrases uttered by Reginald Perrin’s boss, Charles Jefferson (C.J.).His catchphrases became one of the most memorable aspects of the series.

    Firstly on this page, his famous “I didn’t get where I am today…” aphorisms
    To name but a few pithy ones;

    “I didn’t get where I am today without knowing a favourable report when I read one.”
    C.J. tells Reggie of his optimism for the project: “This is going to be a real winner”.
    “I didn’t get where I am today without knowing a real winner when I see one.”
    “I didn’t get where I am today by selling ice cream tasting of bookends, pumice stone and West Germany.”
    “I didn’t get where I am today by waffling.”
    “I didn’t get where I am today without learning how to compromise.”
    “I didn’t get where I am today by biting people in the changing room.”
    “I didn’t get where I am today without knowing the Algarve when I see it.”
    “I didn’t get where I am today by wearing underpants decorated with Beethoven.”
    “I didn’t get where I am today by saying ‘earwig’ instead of ‘thank you’.”
    “I didn’t get where I am today without having a little champagne, not too much, just enough.”
    “I didn’t get where I am today by talking about Dutch parking meter disease!”
    “I didn’t get where I am today by shaking hands with the person on my right!”
    “I didn’t get where I am today without getting letters from cranks.”
    “I didn’t get where I am today without making enemies.”
    “I didn’t get where I am today wondering what life’s all about.”
    “I didn’t get where I am today by thinking.”
    “I didn’t get where I am today by knowing the difference between one country and another.”
    I didn’t get where I am today trusting the easy chairs.”
    “I didn’t get where I am today by caring about people.”
    “I didn’t get where I am today by making room for broken reeds, lame ducks or stool pigeons.”
    I didn’t get where I am today without recognising a front when I see one.”
    “I didn’t get where I am today without recognising another front when I see one.”
    “I didn’t get where I am today by telling the truth.”
    “I didn’t get where I am today without knowing a slight wobble when I enter one.”
    “I didn’t get where I am today without knowing Grot will be a success.”
    “I didn’t get where you are today without knowing the night is darkest before the storm.”
    “I didn’t get where you are today without being a bit of a stickler for offices.”
    “I didn’t get where I am today without recognising “promising inroads” when I see them.”
    “I didn’t get where I am today without recognising a completely useless machine when I see one.”
    “I didn’t get where I am today by serving Welsh people.”
    “Let’s hope I’m not a fait accompli worse than death.”
    “Run it up the flagpole, see if the rats desert a sinking ship.”
    “I’m not an ostrich who buries his head under a bushel.”
    “It’s never too late for a leopard to change horses in midstream.”
    “A leopard never changes his spots twice in the same place.”
    “I feel like a fish out of water, but can’t make him drink.”
    “We’re putting the cart before the trees.”
    “I’m not an ostrich who buries his head under a bushel.”

    Both Professor Holgate and Crawley represent the powerful Establishment stance of self importance and self preservation. Sadly, the leopard ain’t gonna change it’s spots…….👎 This project will never be reigned in to serve the ME patient population’s needs.

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