2022 Guardian: "How to move: exercising with chronic fatigue syndrome" and related articles

Andy

Andy

Retired committee member
"Exercise is not appropriate for everyone living with CFS but if it works for you, here is a beginner’s guide to doing so safely

Chronic fatigue syndrome (CFS) is a disorder characterised by extreme fatigue that can’t be fully explained by any other medical condition.

Research suggests exercise may have a positive effect on fatigue in people with CFS but the evidence is limited, and even small amounts of exertion can lead to post-exertional malaise. Sarah Comensoli, an exercise physiologist, says it’s counterintuitive to start exercising if you know there’s a risk it will lead to malaise.


Exercise isn’t a cure, Comensoli says, but it can help build function and strength, and improve sleep and energy levels. “We don’t focus on taking all the pain away, but we keep the focus on function,” she says. “Exercise can help people do more.”"

https://www.theguardian.com/lifeand...move-exercising-with-chronic-fatigue-syndrome
 
Andy said:
Research suggests exercise may have a positive effect on fatigue in people with CFS but the evidence is limited, and even small amounts of exertion can lead to post-exertional malaise. Sarah Comensoli, an exercise physiologist, says it’s counterintuitive to start exercising if you know there’s a risk it will lead to malaise.
Click to expand...

Cites the flawed Cochrane review with no reference to the caveat placed on it.

I'm sure Cochrane will want to correct the record.... *crickets*
 
That all sounds terribly reasonable in theory. Listen to your body, stay within your limits etc. But in practice for most of us adding exercises for the sake of exercises to what we already need to do to survive is too much. And adding regular sessions, even of only 5 minutes a day broken up with rests between exercises, of something like pilates, can be enough to make us crash. It did for me, and that was when my ME was mild.

I think the whole idea of any planned regular additional activity for pwME is misguided. The end result is almost inevitably that we give up doing something more important to us in order to have the capacity to do it, or we crash.

And it can be hard for the person to identify the exercise regime as the cause of the crash because the effect may not be immediate - there can be a cumulative effect, especially if you start very slowly with just one exercise done once a day, say a single squat, or a 1 minute walk, which may be within your limits, then build it up gradually over weeks until you tip over the edge into PEM or even relapse.
 
Trish said:
I think the whole idea of any planned regular additional activity for pwME is misguided. The end result is almost inevitably that we give up doing something more important to us in order to have the capacity to do it, or we crash.
Click to expand...
Yes, the only exception might be for people who are bedbound, where some carefully chosen exercise might help retain function and blood circulation.

Oh, and maybe for those people who get a lot of pleasure out of swimming or lifting weights or whatever and have sufficient support that they aren't burning all of their energy on activities of daily living.

For example, one year my son went to football training once a week and played half a football game once a week, provided he felt well enough to. He didn't go to school that year, he did home schooling, and rested for most of the week. He did well that year, ending it more healthy than when he started. And the contact with his friends was very important for quality of life and probably for social development too.

Many of us won't have the option to choose exercise over activities of daily living, but, for those who do, it might be a reasonable choice.
 
Does anyone know who the editor for Guardian Australia is? It might be worth pinging them a correction to point out a) the Cochrane review uses an outdated and overly broad definition of CFS that might not correlate with the illness diagnosed today and b) it conflates all exercise interventions into one homogenous mass, despite several of the included trials having very different protocols.

There is also the new Jason DSQ PEM questionnaire and related paper, which makes it clear that repeated subthreshold exertion can trigger PEM as well as a single instance of overexertion. So even a little bit of exercise repeated regularly can cause problems.

As a result, they might be persuaded to add a few more caveats at the very least, and note the conflicting, but more recent evidence from the IOM/NAM and NICE.

None of the above should be controversial. Nor does it get into politics. It just lays out the nuances and asks for said nuance to be included in the article.
 
Last edited:
This lady works for a private rheumatology clinic in Oz called BJC. Not hard to see why she has an article in Guardian Aus looking at her blurb:

Sarah is the manager of our Allied Health team at BJC, and also heads up our Marketing team. She has also been a director of BJC Health since 2018. Sarah has been practising as an Accredited Exercise Physiologist since 2008, and has worked in a number of clinical and gym settings since then. First joining BJC in 2011, she has helped build our Exercise Physiology service to be one which is unmatched in delivering care to those with rheumatic disease.

Straightforward quack advertising.
 
Jonathan Edwards said:
This lady works for a private rheumatology clinic in Oz called BJC. Not hard to see why she has an article in Guardian Aus looking at her blurb:

Sarah is the manager of our Allied Health team at BJC, and also heads up our Marketing team. She has also been a director of BJC Health since 2018. Sarah has been practising as an Accredited Exercise Physiologist since 2008, and has worked in a number of clinical and gym settings since then. First joining BJC in 2011, she has helped build our Exercise Physiology service to be one which is unmatched in delivering care to those with rheumatic disease.

Straightforward quack advertising.
Click to expand...
BJC probably offered a free article, and the Guardian, desperate for content because they pay the least of the major newspapers (at least here in the UK), jumped at it. It's sadly how a lot of publications fill gaps in their publishing schedule with these sorts of 'articles', and PR companies know this, so they exploit it.
 
Last edited:
adambeyoncelowe said:
Does anyone know who the editor for Guardian Australia is? It might be worth pinging them a correction to point out a) the Cochrane review uses an outdated and overly broad definition of CFS that might not correlate with the illness diagnosed today and b) it conflates all exercise interventions into one homogenous mass, despite several of the included trials having very different protocols.

There is also the new Jason DSQ PEM questionnaire and related paper, which makes it clear that repeated subthreshold exertion can trigger PEM as well as a single instance of overexertion. So even a little bit of exercise repeated regularly can cause problems.

As a result, they might be persuaded to add a few more caveats at the very least, and note the conflicting, but more recent evidence from the IOM/NAM and NICE.

None of the above should be controversial. Nor does it get into politics. It just lays out the nuances and asks for said nuance to be included in the article.
Click to expand...

A zinger to Kath Viner would probably have more impact. Australia is a tag on the Guardian CMS rather than a completely separate business unit and providing duff information on healthcare would upset the editorial leads at the HQ in Kings Place.
 
Andy said:
"Exercise is not appropriate for everyone living with CFS but if it works for you, here is a beginner’s guide to doing so safely

Chronic fatigue syndrome (CFS) is a disorder characterised by extreme fatigue that can’t be fully explained by any other medical condition.

Research suggests exercise may have a positive effect on fatigue in people with CFS but the evidence is limited, and even small amounts of exertion can lead to post-exertional malaise. Sarah Comensoli, an exercise physiologist, says it’s counterintuitive to start exercising if you know there’s a risk it will lead to malaise.


Exercise isn’t a cure, Comensoli says, but it can help build function and strength, and improve sleep and energy levels. “We don’t focus on taking all the pain away, but we keep the focus on function,” she says. “Exercise can help people do more.”"

https://www.theguardian.com/lifeand...move-exercising-with-chronic-fatigue-syndrome
Click to expand...


Comments are now closed on it but how extraordinary to have an early on link saying 'evidence suggests' that leads to a paper that says 'the evidence is uncertain' for all of the measures, particularly long-term. And then to snowplough through that as if it says the opposite, and give pilates and walking as suggestions is just weird. Any excuse to sell something.

Why do people like Sarah COmensoli decide to pick on the one condition it doesn'twork for? Some weird challenge to themselves or just ideology that there can't be something that is an exception to their rule? Why on earth do they do it - so knowingly given she's picked research that doesn't in any way back up her suggestions.
 
The problem with articles like this and I suspect for the average medical worker is that they think our problems involve exercise. Even when I was fairly mild it was day to day living I could not manage.

There is no need for us to exercise, ever. What we need help to do from physiologists and "rehabilitation" is ways to keep moving. Climbing a flight of stairs or having a shower will help keep joints from stiffening. Reaching and carrying a weight, whether shopping or a child, will do us good and is enough resistance training to stave off the worst effects of being forced to be sedentary.

Anything beyond that can wait until we start to get better spontaneously or there is a treatment.
 
Moved post

And another "You need to exercise" article. Times of India.

'Do you suffer from chronic fatigue syndrome? These easy exercises may help you feel better, healthier'

'A person who suffers from Chronic Fatigue Syndrome is left puzzled by the way CFS takes over the body. Imagine feeling completely rundown continuously and not being able to remedy it by taking more rest or sleep. Even exercising seems to hurt but to retain joint mobility, you need to exercise. Here's a beginner’s guide to working out safely.'

'The worst part is not that they can sleep off the problems, stay laid-back and watch the body heal. The fatigue makes them feel ill-at-ease and sleep evades them too. This symptom is called post-exertional malaise (PEM).'

' Sarah Comensoli, an exercise physiologist is quoted by The Guardian alerting enthusiasts that exercise isn’t a cure for CFS but it can help build function and strength, and improve sleep and energy levels.'

'“We don’t focus on taking all the pain away, but we keep the focus on function,” she says. “Exercise can help people do more.”

' Exercise is a double-edged sword. While it can heal you and strengthen you, it can also make the disease much worse if not done appropriately.'

'Experts suggest that you must go for regular walks, even if for only a few minutes and wear a pedometer and a heart rate monitor to help you measure how far – and at what intensity – you can walk before you reach a state of fatigue.'

https://www.timesnownews.com/health...lp-you-feel-better-healthier-article-90156049






This looks like the new trend, for journalists to presume to tell us we need to exercise "to heal" and "to do more" and here is how we can do it "safely". Still calling the disease and main symptom "Fatigue"

This article gives mixed messages all the way through. But it keeps the focus on the false statement of 'need to exercise'.

Attempts to post a Comment to this article have been repeatedly foiled.

The underlining in the article is mine
 
Last edited by a moderator:
Lou B Lou said:
And another "You need to exercise" article. Times of India.

'Do you suffer from chronic fatigue syndrome? These easy exercises may help you feel better, healthier'

'A person who suffers from Chronic Fatigue Syndrome is left puzzled by the way CFS takes over the body. Imagine feeling completely rundown continuously and not being able to remedy it by taking more rest or sleep. Even exercising seems to hurt but to retain joint mobility, you need to exercise. Here's a beginner’s guide to working out safely.'

'The worst part is not that they can sleep off the problems, stay laid-back and watch the body heal. The fatigue makes them feel ill-at-ease and sleep evades them too. This symptom is called post-exertional malaise (PEM).'

' Sarah Comensoli, an exercise physiologist is quoted by The Guardian alerting enthusiasts that exercise isn’t a cure for CFS but it can help build function and strength, and improve sleep and energy levels.'

'“We don’t focus on taking all the pain away, but we keep the focus on function,” she says. “Exercise can help people do more.”

' Exercise is a double-edged sword. While it can heal you and strengthen you, it can also make the disease much worse if not done appropriately.'

'Experts suggest that you must go for regular walks, even if for only a few minutes and wear a pedometer and a heart rate monitor to help you measure how far – and at what intensity – you can walk before you reach a state of fatigue.'

https://www.timesnownews.com/health...lp-you-feel-better-healthier-article-90156049






This looks like the new trend, for journalists to presume to tell us we need to exercise "to heal" and "to do more" and here is how we can do it "safely". Still calling the disease and main symptom "Fatigue"

This article gives mixed messages all the way through. But it keeps the focus on the false statement of 'need to exercise'.

Attempts to post a Comment to this article have been repeatedly foiled.

The underlining in the article is mine
Click to expand...
Wouldnt it be marvellous if PEM was feeling 'ill at ease'!!!!!!!!!!!!!!!!
 
You must log in or register to reply here.
Back
Top Bottom