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.

 

Here's a post of mine from 18 years ago in case it is of use to anyone:

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.

 

Stuart Murdoch also spoke at #MillionsMissing in Scotland this year:

https://www.youtube.com/watch?v=OpMBcJtDSp0

 

@Amw66 were you at this/do you know what was said?

Overall this #MM event seemed to have been excellent.

 

I was not at this ( sent shoes and tuned into the live facebook stream) @Emsho was directly involved. It did look fantastic and the mass lie down at the end was particularly effective.

 

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."

 

Is that the Gupta I think it is?

 

Different Gupta Ashok Gupta is the one with the LP-like self help programme:

https://www.guptaprogramme.com/

 

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

 

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).

 

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

 

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.

 

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.