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

[ahimsa]

"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

Short article, easy to read. Not able to cut/paste any quotes now, need to go rest!

 

[ScoutB]

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."

Anyone know what studies he could be thinking of?

 

[Hoopoe]

the only thing that consistently seems to help is giving up work

He had the courage to say it.

I can't recall any such studies though! I too would like to know which ones he is referring to.

 

[Jonathan Edwards]

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.

 

[Axel]

This sort of article must have been written in 10 minutes and is bound to contain incomplete ideas and oversimplifications.

 

[hotblack]

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.

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.

 

[Jonathan Edwards]

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.

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.

 

[hotblack]

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.

 

[Jonathan Edwards]

Know your audience, pick your battles.

Maybe, but part of the audience will be the BPS crowd peering in getting ready to explain why finding genes is totally unexpected and irrelevant and proves nothing about not needing some good exercise like all the other psychosomatic patients. And GPs (including professors thereof) convinced of the magical therapeutic powers of exercise, whose eyes will roll - and so on.

I think it would just be wise not to make the distinction from 'other diseases'. Chris is ten steps ahead of all these people in his analysis. It is a pity to feed them any basis for thinking it is only nine.

 

[hotblack]

Maybe, but part of the audience will be the BPS crowd peering in getting ready to explain why finding genes is totally unexpected and irrelevant and proves nothing about not needing some good exercise like all the other psychosomatic patients. And GPs (including professors thereof) convinced of the magical therapeutic powers of exercise, whose eyes will roll - and so on.

I think it would just be wise not to make the distinction from 'other diseases'. Chris is ten steps ahead of all these people in his analysis. It is a pity to feed them any basis for thinking it is only nine.

But they’ll do that anyway won’t they? We’ve seen them do so repeatedly. And if he said exercise doesn’t help anyone it would give them ammunition there and swathes of healthcare professionals may not listen to anything else he said. I agree that it would probably have been better not to touch in it all, but given how pervasive the idea of ‘well why don’t they exercise more’ is, it’s a tricky one to skip.

It’s a tough one to get right in this context I guess. How would you have approached this interview and answered the questions?

 

[Trish]

While I agree that there is no evidence for exercise being a relevant treatment for any fatiguing illness, I don't think that means that ME/CFS should be regarded the same way as other fatiguing conditions in terms of advice on exertion in daily life.

PEM means the advice for pwME needs to talk about rationing exertion to try to minimise PEM and avoid worsening. I'm not aware of that being relevant in other fatiguing conditions. We do need any medical and care services to understand and help pwME to understand that difference. Whether that means different services is a separate matter.

 

[Hoopoe]

One message in an article like this one could be that understanding the molecular basis will allow us to find treatments that restore normal tolerance of activity and exercise.

People who are invested in exercise will find this message easier to accept.

 

[Jonathan Edwards]

It’s a tough one to get right in this context I guess. How would you have approached this interview and answered the questions?

All I am really saying is that Chris is in such a strong position and that anything that might be based on the folklore around ME rather than the most rigorous science might spoil that.

 

[Jonathan Edwards]

I'm not aware of that being relevant in other fatiguing conditions.

This is an interesting point. If you had a fractured femur or multiple sclerosis or septicaemia or diabetes and you were told that the only way to get better was to plug away at exercise I wouldn't be surprised if you ended up with at least as bad worsening of your condition as for ME/CFS. It is just that nobody ever says that. They do for osteoarthritis and it probably makes a lot of people quite a lot worse.

I don't know of any other 'fatiguing condition' where the evidence for benefit and lack of harm is any better than for ME/CFS.

 

[Nightsong]

Agreed but the problem is that recommendations of exercise for all manner of conditions have been so pervasive for so long - the RCP has been promoting exercise at least since their 1991 report "Medical Aspects of Exercise" - that it's substantially easier to argue for an exception for ME/CFS on the basis of deterioration / PEM than to make a more general case against something quite so entrenched.

the BPS crowd peering in getting ready to explain why finding genes is totally unexpected and irrelevant

I'm not so sure that's what they will do; I think they'll try to come up with a modified psychosomatic model that explains any genetic results. If genes associated with synaptic plasticity etc are found it's easy to predict how they'll incorporate such findings into their models.

 

[Jonathan Edwards]

it's substantially easier to argue for an exception for ME/CFS

But if something is 'easier to argue' but ultimately not in best interests of people with ME/CFS I would argue that it is to be avoided. Just don't argue that point at all. It is, after all, irrelevant to what Chris was presenting.

 

[Axel]

There is an abyss with the nature of experience anyway. The right advice would be "don't move, don't try even to look at the fly in the ceiling, don't think. Just let you sink" (even if it doesn't, and that the problem :it doesn't sink to rest). It is not even what people imagine with the word "rest". So "exercice" ? It is like going to a restaurant when you are everyday lurking for peelings.

Once we have more information about the mechanism, we will use terminology other than ‘fatigue’, ‘rest’ and ‘exercise’.

 

[Ash]

x

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.

Yes.

Not a viable strategy- in service of the goal of access to evidence based care for people with an ME diagnosis-to challenge representation of ME/CFS as misrepresentation with treatment (or otherwise) of this illness un-evidenced but yet accept and further promote the acceptance of the idea that all other chronic illnesses but ours may be rolled in together as benefiting from that which harms us, no matter the specificity or quality of the evidence available on this.


Edit: wording all over the place.

 

[Ash]

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.

None of us have to speak on the wider context on every occasion, we just have to speak from a position of understanding that there is one.

In this case or others comparable, just the opposite of adding in more. No need refer to the wider issue at all. Just to refrain from making comparisons to other illnesses that might not hold up.

This isn't meant as direct criticism of CP not a comparison that he came up with. But an important point for us all generally to consider.

 

[Ash]

But they’ll do that anyway won’t they? We’ve seen them do so repeatedly. And if he said exercise doesn’t help anyone it would give them ammunition there and swathes of healthcare professionals may not listen to anything else he said. I agree that it would probably have been better not to touch in it all, but given how pervasive the idea of ‘well why don’t they exercise more’ is, it’s a tricky one to skip.

It’s a tough one to get right in this context I guess. How would you have approached this interview and answered the questions?

No need to say that exercise doesn't help anyone. Just to avoid saying or agreeing that exercise is helpful for most illnesses.

In the first instance it actually doesn't matter whether exercise does or doesn't help most illnesses. It matters that we stop repeating things that we can't verify. Out of scientific rigour. Since that's what we're asking for from others.

Next strategically and politically it's not useful to hold us up as the only special case who defy the ordinary laws of biology. There are many chronic illnesses out there and it would be very surprising if only this illness were unique in regards to unfortunate consequences of exercise.

We know that in any case there are plenty of chronic illnesses where people report being unable to perform exercise to the level that their healthcare teams expect feeling worse or deteriorating afterwards. Just not with the same pattern as those with ME. So it would be a bit rich to advance our cause on the back of their healthcare providers disbelief of them.

Also the line between acutely and chronically ill isn't necessarily sharp and presumes good management in any case, which leads to plenty of inappropriate advice to exercise from 'experts'.