Choline on the Brain? A Guide to Choline in Chronic Fatigue Syndrome
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Countess of Mar joins Dr Myhill's campaign for a Public Inquiry into medical abuse of ME sufferers

Discussion in 'Action Alerts and Advocacy' started by Laelia, Apr 4, 2017.

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  1. Laelia

    Laelia Senior Member

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    Great letter Trish! Good on you for writing it! I'm sorry to hear that you got a dismissive response to it. Yes, let's hope other MPs will be more willing to listen.
     
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  2. arewenearlythereyet

    arewenearlythereyet Senior Member

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    I completely missed the enormous list to print out and give to the mp.

    I think what I was trying to say though is that with any campaign, you need to keep your messages clear concise and easy to understand. It's fine to refer to other evidence, once MPs are won over, and what's provided is more than sufficient. It's the conversion in the first place I worry about.

    Too emotive, too confusing and difficult to understand = low conversion rate.

    It would have been better to have a couple of angles depending upon the audience and their motivations?

    So on this basis it is disorganised .......but very well meaning I'm sure. I will get the kindle book and have a read so I'm better informed though....think I can stomp up £4.
     
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  3. lilpink

    lilpink Senior Member

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    I understand a colour coded map is in the works.
     
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  4. Laelia

    Laelia Senior Member

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    I guess the idea behind this was to make it easy for people to quickly see if their own MP had been adopted and what progress is bring made across the constituents. But yes I agree, this map could easily give people the wrong idea. Do you think it would be worth raising these concerns with Dr Myhill's team?
     
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  5. Laelia

    Laelia Senior Member

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    Yes I agree with you and share your concerns. I would hope that it's only people who understand the issues well and feel confident in communicating them in a clear and concise way that are putting themselves forwards for this. I appreciate that this is not an easy task though, even for those who are highly skilled in the art of communicating as persuading! It will be interesting to see how many are successful.

    Great! Let us know what you think of it (the first chapter in particular).
     
  6. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I can understand Margaret Mar's wish to support this. However, I fear that the campaign will just serve as a red rag to a bull both with medical professionals like myself and with politicians. If a campaign of this sort is to work it needs to be very carefully argued on good evidence with great care not to appear to support vested interests. This one makes good points on CBT and GET but then suggests there are alternatives - for which the evidence is just as poor or worse. The vested interest of Dr Myhill comes through loud and clear.

    The PACE people have talked a lot of rot about putting researchers off ME/CFS but my worry is that is in fact this sort of over-emotive poorly argued campaign that will put researchers off. The last thing we want to do is to give the impression that the alternative to the bad since of PACE is .... more bad science. And it seems to play right into the hands of the Wesselyan claim that all patients want is a 'physical' label so that they can draw their benefits.
     
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  7. Laelia

    Laelia Senior Member

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    Thank you very much @Jonathan Edwards for your input on this. Those of us on PR always value your opinion on such matters!

    The concerns you raise about this campaign are shared by others on here. I wonder whether these issues may not be obvious to Dr Myhill. I'd like to believe she has ME sufferers interests at best heart and is not doing this to sell as many books as possible!

    The campaign is in it's early stages so it should not be too late for changes to be made to the way it is implemented. Do you think if we were to raise the issues and concerns we have with Dr Myhill she might consider a rethink on this? Perhaps we could write her a carefully constructed letter and gather the signatures of as many patient support groups and charities as we can muster up (I believe we have fairly good links here on PR). Of course all this would require some very careful planning and consideration.

    Would this be a sensible way of going about things do you think? Thank you again for your thoughts on this matter!
     
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  8. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    To be honest I think Dr Myhill is in a weak position here. The core message of getting a better deal for ME sufferers is fine but it is not new and people like Margaret Mar and Charles Shepherd have done a huge amount of useful work in the political arena already. There has also been a recent meeting involving Margaret Mar and IiME with the Chief Medical Officer's department. I do not have much experience with the politics but I think this is the sort of thing @charles shepherd understands best. He might want to comment.
     
  9. Laelia

    Laelia Senior Member

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    I think the strength of Dr Myhill's position could become irrelevant here. If we were to succeed in pursuading Dr Myhill to make the changes you suggest, the campaign would no longer put her at center stage. Regardless of whether or not we choose to do this, the success of MAIMES will depend largely on the efforts of the individuals and organisations who get behind it. If these efforts are big enough then the campaign could become a very strong force for change.

    The message is not new but I believe the organised nationwide effort to get MPs to sign up to this is new. It's this coordinated effort which I think puts us potentially in a very strong position.
     
    Last edited: Apr 6, 2017
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  10. Valentijn

    Valentijn Senior Member

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    NICE explicitly states that a heart rate monitor should be used with GET in ME patients, to keep heart rates in the 50-70% range (real ME experts say 60% or less). I have never heard of any UK fatigue clinic doing this.
     
    Last edited: Apr 6, 2017
  11. Keela Too

    Keela Too Sally Burch

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    Frankly I think MAIMES is an initiative worth pursuing .

    I spoke to my MP yesterday and he was horrified by some of the dilemmas we are facing. He was very keen to find out more and to see what he could do to help our situation. One thing that really seemed to strike a cord with him was the fact that the DWP part funded the PACE trial.

    I also explained to him about how funding was mostly directed to psychiatry based studies, and that biomedical research seemed to be have a harder time securing funding. I explained the implications then for the volume of peer reviewed papers on ME, and how potentially the "experts in ME" that NICE would consult, were not the people patients would like them to listen to....

    It was my second visit to see him - the first was pre the MAIMES campaign. I think getting MPs on board could be a very powerful move.

    I don't think MAIMES needs to replace other actions that are going on, but right now it can only help to build momentum for our case for fair treatment on realistic and appropriate evidence.
     
  12. Keela Too

    Keela Too Sally Burch

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    Yes... I keep plugging that fact. (Although I suspect that stipulation was added because they though ME patients might not push themselves hard enough to reach 50% of max, but hey ho, it is still useful for all of us!)

    For those that may not already have seen this I did a PowerPoint a while back on this very thing.
    Heart Rate Monitoring and NICE guidelines for ME
     
  13. A.B.

    A.B. Senior Member

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    I think we should not be afraid to say this is a physical illness. It's an evidence based claim. The IOM report is an authoritative source that can be referred to (did I say that we as community haven't appreciated it enough?). The PACE trial is amusingly the best evidence that a mental health approach doesn't work.

    We do need to be careful to avoid promoting treatment models because there's no good evidence for anything, and I suspect many professionals will find it difficult to support a campaign that does this.

    I think it needs to stressed that the abuse of patients is the consequence of the existing paradigm where the illness is viewed as psychosomatic. Again, there is much evidence that it's not. The reason this needs to be stressed is because the BPS proponents can otherwise say that the problem is not with the paradigm but with society's poor attitude to mental illness.
     
    Last edited: Apr 6, 2017
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  14. Laelia

    Laelia Senior Member

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    Super work Sally! Thank you! :)

    And thank you also for sharing a bit about how the discussion went with your MP. Hopefully others can learn from your experience.
     
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  15. Laelia

    Laelia Senior Member

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    Just another thought I had on this point. I don't know how strong Dr Myhill's current position is politically but it's clear that she does have a very large support base among ME sufferers. This puts her in a strong position to garner support for this campaign and mobilise the ME community. I think we need to use this to our advantage.

    Also I doubt whether we have yet to see what Dr Myhill is capable of in the political arena. She strikes me as someone who has the potential to become a force to be reckoned with!
     
    Last edited: Apr 7, 2017
  16. Cinders66

    Cinders66 Senior Member

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    I haven't previously looked into the campaign as I didn't think it would take off and I've tended to see dr myhilll as too alternative. If Lady Mar is involved it would add credibility and I personally think radical campaigning is very much something needed. Dr Shepherd and the MEA & the forward ME group generally have one approach but 30 years of working politely with the establishment hasn't made the progress we need. I agree with @A.B at using the IOM report as supporting evidence of this as a physical and neglected disease and just working from there to improve things in many fronts. I will read up now on the aims of this campaign and see if it is something I will support.

    Regarding gaining the support of MPs. I don't know if it's easier with non conservative MPs which mine have been. I usually find any letter I've sent in the past just gets a defence of status quo policy whereas opposition MPs might be more up for challenging the way things are being done.

    Edit I see it's a call to people able to attend MPs surgeries which rules me out. Letter writing is often fobbed off so I see the value in this. I do have concerns about Dr Myhills book being a central thing here as I think she suggests answers that aren't necessarily there. The aims of getting ME approached more seriously as a serious physical illness are good though.
     
    Last edited: Apr 6, 2017
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  17. arewenearlythereyet

    arewenearlythereyet Senior Member

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    Have you read her website? It's all over the place. Woolly, contradictory, overly endorsing things that have no evidence (e.g. Stone Age diet), recommending antidepressants for pain. There are some great things buried deep in the opinionated garbage but you have to really sift it out. like most people she doesn't have the answers so this will be her undoing if she keeps overstating things with nothing but opinion and loose associations to remote research papers to back it up.

    I respect what she is trying to do, and don't doubt her passion and drive, but no I don't think she makes a credible advocate on her own. I think she needs to be part of a team with different skill sets where she can perhaps be the voice of the patient without actually putting her foot in it.
     
  18. Laelia

    Laelia Senior Member

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    Yes I have.

    I agree, Dr Myhill's website is far from perfect! I think she would argue that the treatments she recommends are backed by evidence. I'm not sure what the facts are on this, it's something I would be interested to look into. For example, I don't know if you are correct to say that the stone age diet has no evidence, I was under the impression that there was quite a lot of evidence for this (or aspects of it at least).

    I think we are in agreement on this. As I have tried to explain already, I believe this campaign needs to be team effort with a great deal more input from all the patient groups and charities.
     
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  19. A.B.

    A.B. Senior Member

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    It will look like quackery to most, whether the treatments have some evidence or a good rationale behind them or not.
     
  20. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    We have discussed this many times before but I worry about this scenario:

    'We have been denied the proper validated treatments, we are entitled to the proper treatments.'

    'What proper validated treatments are there?'

    'Er, none, as yet.'

    "What was it you wanted then? And while I think of it, if there are no validated treatments why don't we close down all ME/CFS services as a waste of money. We have been looking for way of saving money.'
     
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