Stuart Murdoch (of Belle and Sebastian)

I agree with @MEMarge , at least he is trying to do something. This is his very first interview as a spokesperson, so let’s give him a chance to figure this out. He hasn’t been very involved with the community for long and it can be a steep learning curve just joining the conversation.

That being said I agree OMF should have briefed him better beforehand. Someone obviously did afterwards, given that he felt the need to prepare the community for that it probably wasn’t perfect.

I’m probably biased because I love Belle & Sebastian.
 
NelliePledge said:
I don’t have a bad feeling I just think being an advocate is different from being a musician and like any role you have to learn how to do it. The OMF should be facilitating this. There are people he could learn from like @Tom Kindlon and @Emsho
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Here's a post of mine from 18 years ago in case it is of use to anyone:
Guidelines/Advice for doing ME/CFS media interviews particularly telling a case history
https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0009E&L=CO-CURE&P=R513
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I don't want to contact him myself. I hope anyone who does also thanks him for speaking up if they are making suggestions to him.
 
From watching those two short video clips that Stuart Murdoch put on Twitter my impression was that he was really struggling with brain fog. He was clearly quite distressed that he had got it wrong in some way in his interview. He may be very well briefed on ME, but having a bad day and not conveyed what he meant to.

I think it's often a bad idea to ask people who have ME and who are also 'celebrities' to act as spokespeople for ME unless they are really up to speed on ME and articulate. Otherwise all they can do is talk about their own experience and can end up spreading misunderstanding.

If I blame anyone for this sort of situation it is the organisation that asks them to be an ambassador, not the sick individual who is trying to do their best.
 
Trish said:
He was clearly quite distressed that he had got it wrong in some way in his interview.
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Yeah, he mentioned that the piece CNN was doing was a 'two minute' one. And then he was beating himself up for not adequately conveying in the interview his experience with ME, and that of others, (as well as answering the questions about his band...).

I think most of us would have trouble covering the broad range of experiences of ME in a few minutes.

But yes, if he could call the illness 'ME' and forget the chronic fatigue bit, that would be great.
 
OMF Ambassador Stuart Murdoch on CNN - Oct 3rd & Oct 6th

"OMF Ambassador Stuart Murduch will be featured this week on CNN News in the U.S. as a part of its feature, Turning Points. Stuart's message is to raise awareness about ME/CFS.
Tune in to CNN to watch Stuart on:
Wednesday, October 3 - CNN "New Day" 8:00 AM - 9:00 AM ET
Saturday, October 6 - CNN "Newsroom" 2:00 PM - 3:00 PM ET

CNN's "Turning Points with Dr. Sanjay Gupta" is a series dedicated to profiling incredible individuals who encounter life-changing health challenges and use their stories to inspire others. We are thrilled that CNN is supporting our efforts to spread awareness and educate the public about ME/CFS. Ryan Pryor, CNN Journalist & Co-Director of Forgotten Plague, interviewed Stuart and produced this story.
The story will be available to view around the world on Turning Points soon."
 
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).
 
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.
 
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.
 
Responses to deleted posts

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.
 
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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
 
NelliePledge said:
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
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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.
 
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.
 
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