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Video: Stuart Murdoch: ME/CFS update, 27 December 2018

Discussion in 'Advocacy Projects and Campaigns' started by Andy, Jan 4, 2019.

  1. Andy

    Andy Committee Member & Outreach

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    I've not watched it so don't know if it's good, bad or indifferent.
     
  2. Andy

    Andy Committee Member & Outreach

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    This is the post on the official Belle and Sebastian Facebook page
    Code:
    https://www.facebook.com/belleandsebastian/posts/10156534432973500


    Nice to see all positive comments (caveat: so far, at time of posting).
     
    MEMarge, JaneL and Invisible Woman like this.
  3. Trish

    Trish Moderator Staff Member

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    Just watched it. He talks about his experience while on tour in America with his band of going to an ME doctor there.

    He is now on LDN which he says he thinks is helping, and he encouraged others to try it.

    The American doctor also prescribed antibiotics to treat SIBO (small intestine bacterial overgrowth) which he seems to equate with leaky gut. He also mentioned statins to treat archaea which made no sense to me. He hasn't been able to get either of these treatments in the UK yet.

    He says his attitude has changed from 'treat the whole body', which on the NHS means do nothing, to 'treat the symptoms' which means do what you can to treat pain etc. He also talked at the end about positive thinking.
     
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  4. JaneL

    JaneL Senior Member (Voting Rights)

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    I’ve just watched it too. @Trish sums it up nicely.

    Sorry to disappoint but I doubt whether it’s going to stand up very well against the scrutiny of S4ME members. (I’ll leave that job to other more capable members)

    This is what Stuart says towards the end of the video:

     
  5. Andy

    Andy Committee Member & Outreach

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    It can be both a positive and a negative that we can be quite picky here, especially about how we would like things said by those who are advocating for us. It's the unfortunate result of decades of misinformation by, in the main, the BPS crowd and the result is that we are likely to seem to be being unfair towards those who do speak up publicly.

    There probably are occasions though when we need to take a step back and rather than worry about the exact words used, just appreciate the fact that someone with a certain amount of celebrity status has actually spoken up.
     
  6. Trish

    Trish Moderator Staff Member

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    I don't think I would want to dissect or judge the video. It is what it is - one pwME sharing his experience with other pwME.
    I would not use it for advocacy except as a personal story of one man's experience. I don't think it's claiming to be any more than that.
     
  7. InitialConditions

    InitialConditions Senior Member (Voting Rights)

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    there's now a new upload. he's since had a bad period and so is less chipper.
     
  8. NelliePledge

    NelliePledge Moderator Staff Member

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    it’s good that he’s showing the fluctuation. It’s his story so he can express as he wishes. Thank goodness he seems like a pretty sensible bloke and giving out a realistic perspective not the tangents that some of the personal stories out there take.
     
  9. Esther12

    Esther12 Senior Member (Voting Rights)

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    Best wishes to him. It's so difficult for individual patients to work out what is best, what is pseudo-science, what is questionable but plausible science, etc. The state of things in the UK is so terrible, but the situation in America brings its own problems and risks for patients, and it did sound like he may have got some poor advice there.
     
  10. Barry

    Barry Senior Member (Voting Rights)

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    Yes I agree. If ME were an illness where scientists and the medical profession had done everything right by PwME, I don't think anyone would have any problem with someone promoting the benefits of staying positive. My wife certainly strives very hard to stay positive, and I admire her greatly for it, and yes - I do strongly believe it helps her cope better. Not saying she doesn't get down, of course she does, but she always fights to get back again. Like most people here I think. I recently lost a work colleague/friend to cancer, and his incredible emotional strength and positive attitude (and his wife's) was truly inspirational to many of us. Although he eventually lost his battle, I'm sure his remaining time was better for both himself and his family than it might otherwise have been.

    So I would not wish to knock anyone who says that staying positive helps cope with an illness, because frankly I think it does. I also believe there may sometimes be hair's breadth borderline cases, between life and death, where it may just make the difference whether a person pulls through or not; people with experience of working in casualty wards would know better than me I guess.

    It's all too easy to conflate what I'm talking about above, with the airy fairy mantra that everything can be fixed with a spot of positive thinking! That, I most certainly have no time for, and I don't believe is what Stuart Murdoch was saying.
     
    Last edited: Jan 5, 2019
  11. NelliePledge

    NelliePledge Moderator Staff Member

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    Agree @Barry for me it’s about balance rather than artificial positivity. So far I’ve done better with mental health by having frank discussions with my counsellor about concerns and thinking through what if any options i have to mitigate them. Admittedly my issues have always been situational however one issue not ME related was very distressing and entirely outside my control to change. The only option was to live with the issue accepting I could do nothing. This is where artificial positivity would fail because it doesn’t address the cracks just pretends they’re not there. Instead my positivity was in not brushing the issue under the carpet but facing up to it each time it surfaced and working through with my counsellor. I would say that in itself was a positive approach but I would also look to recognise positives elsewhere in my life and make sure I had social stuff to look forward to. I realise this may only be relevant to the type of situational low mood I experienced
     
  12. Barry

    Barry Senior Member (Voting Rights)

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    Agree entirely. Being positive has many shades, often for the same person in different situations. Sometimes its a bl**dy hard grind and sheer pig-headed obstinacy; often it doesn't feel like being positive, but to others looking on it clearly is.
     
  13. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    Also agree with above comments.

    For me my problems with positivity are not about any one person's experience but about the omnipresence of the idea that it will help. Although this can be true about coping because of the amount of exposure to the idea there is a priming effect that causes first a focus on the idea even when presented as part of a package of thoughts. And then after focussing on it it tends to get exaggerated.

    It does a service to no one who is actually ill with anything because those who do not have the illness experience use these two things to justify a rather unhelpful attitude toward the sick.
     
  14. obeat

    obeat Senior Member (Voting Rights)

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    Last edited: Jan 5, 2019
  15. Trish

    Trish Moderator Staff Member

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    Thanks @obeat. I like to learn new things!
    Here is the conclusion of the abstract of the review paper you linked in case anyone else is interested:
     
  16. Andy

    Andy Committee Member & Outreach

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    Link to this new video
     
  17. Barry

    Barry Senior Member (Voting Rights)

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    I don't entirely agree, because outside of ME advocacy groups most people are not primed, and will be able to see Stuart Murdoch's comments about being positive simply for what they are, and read nothing more into it. He makes it very clear there is no cure, and that symptom management and coping skills are all there is. Before, and soon after, my wife got sick, I would not have misunderstood what he is saying here, and I think it would have helped. But my wife and I have always believed in trying to stay positive anyway, and becoming ill does not change that.
     
  18. InitialConditions

    InitialConditions Senior Member (Voting Rights)

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    Staurt has gone several decades managing his ME pretty well - he seems to have remained mild-moderate and has carved out a successful, active career and he seems genuinley happy and content. Maybe this was luck. But part of me can see how his attitude to his illness may have helped. As he explains in his latest video, he had to accept the illness and live with it, and he took this route instead of becoming bitter and full of anger. Now some anger is warranted - especially for advocacy - and some bitterness is almost a given. But yes, it's about balanace. He's a level-headed and sensible bloke doing something he loves, and I'm sure this has played at least a small role in him keeping stress levels down and keeping some symptoms in check.

    I'm glad he decided to upload a video so soon after the positive treatment video - it just shows the frustrating pattern of fluctuation of symptoms and how this drives mood!
     
  19. wigglethemouse

    wigglethemouse Senior Member (Voting Rights)

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