Science Illustrated: People with chronic fatigue have been misunderstood for decades: reputable researcher offers surprising advice

ahimsa

ahimsa

Senior Member (Voting Rights)
"People with chronic fatigue have been misunderstood for decades: reputable researcher offers surprising advice to those struggling with the illness"

Sadly, the headline uses "chronic fatigue" but at least the subheading uses "chronic fatigue syndrome."

"Chronic fatigue syndrome has often been overlooked by doctors and researchers. Geneticist Chris Ponting has revolutionised our understanding of the disease – and he has a remarkable message for those suffering from it. "

People with chronic fatigue have been misunderstood for decades: reputable researcher offers surprising advice to those struggling with the illness | scienceillustrated.com

Geneticist Chris Ponting shares his best advice for managing chronic fatigue syndrome, aka ME/CFS. Get it here.
scienceillustrated.com scienceillustrated.com

Short article, easy to read. Not able to cut/paste any quotes now, need to go rest!
 
Ah well it’s a pop sci article I guess so it has to say something rather bold at the top, in this case that they’ve found the cause. Moving past that though..

This was an interesting point:
"Having heard from thousands of people what they have been through, it is appalling that the only thing that consistently seems to help is giving up work. There are even studies that show this."
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Anyone know what studies he could be thinking of?
 
A nice little article but Chris seems to have been seduced into a bit of loose talk here and there!

"Exercise is good for most illnesses, but for ME – particularly early on – research shows that it can be harmful. If a family member developed ME, I would say: ‘Now you need to rest.’"

No, Chris, exercise is not good for any illness much. It is useful for keeping yourself free of illness by helping to keep your weight down but while you are ill it is almost universally unhelpful. Even after a stroke, what helps is getting back to doing normal things, not exercise. And even for preventing osteoporosis I doubt there is any good evidence since keeping thin tends to aggravate osteoporosis.
 
Jonathan Edwards said:
No, Chris, exercise is not good for any illness much. It is useful for keeping yourself free of illness by helping to keep your weight down but while you are ill it is almost universally unhelpful. Even after a stroke, what helps is getting back to doing normal things, not exercise. And even for preventing osteoporosis I doubt there is any good evidence since keeping thin tends to aggravate osteoporosis.
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While that may be a worthwhile argument to make, I can see why focusing on the specifics of me/cfs and framing things in a way in which people may listen is what is important here. Overcoming the wider orthodoxy may be something others can and should do but I’m glad Chris is picking his battles and choosing to fight for us.
 
hotblack said:
While that may be a worthwhile argument to make, I can see why focusing on the specifics of me/cfs and framing things in a way in which people may listen is what is important here.
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In spirit, I totally agree.

However, there is an important practical issue here. ME/CFS advocates have for a long time been calling for ME/CFS services to be distinguished from other services because they need to be treated differently and should not be included in services for other fatigue. This puts a focus on PEM as a basis for triaging to services. The unfortunate effect is that you end up with 'special' services for ME/CFS that are hived off to therapists who focus on just exercising a bit more gently - pacing up.

It would be much better if it was recognised that nobody with fatigue needs to do exercises to get better as far as we know. And people with ME/CFS would do better being handled by the same services as everyone else and as a result treated as having a genuine problem. I admit that at the moment there are no services for anything much - you even wait three days in casualty if you are septicaemic - but I still think that making it sound as if ME/CFS is somehow unique in terms of exercise is unhelpful.

This is not a trivial issue. In terms of basic care it dominates the picture. Services are still being set up that deliberately channel people either to pacing up, or in the private sector to fringe therapies. People with ME/CFS should be in the mainstream of medicine, not at the margins.
 
Sure @Jonathan Edwards but we must look at the context of the article and audience. Should Chris be going out to change an entire model of healthcare dominant in the NHS (and more widely) and risk being dismissed as ‘anti exercise’ or focus on making a point important to me/cfs. Maybe it would be better to just not mention exercise at all. But I see no way his message would be better received or more effective if he took on the wider issue.

There are issues with the idea of special services but equally there are issues with us being integrated into wider community services, a point you frequently make. I get what you’re saying be ause we discuss it s lot here. I don’t see though how this is all going to be communicated effectively in a pop science interview. Know your audience, pick your battles.
 
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