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

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.

 

Statins are used by some US gastroenterologists to treat SIBO. Depends on results of methane breath test.
.https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4737270/
There are some other papers.

 

Link to this new video

 

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.

 

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!

 

Since there has been some brief talk of statins in this thread, and Stuart talked about them in the video, I felt I should mention that they may not be good for mitochondrial function.
Link : Coenzyme Q10 and Statin-Induced Mitochondrial Dysfunction