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

"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

 

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*

 

^ This, a thousand times.

 

Weird that this is published in a newspaper because there is no actual news story here.

It seems that it is part of a series on how to move where they write advise on exercising for all sorts of illnesses.

 

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 It might be worth pinging them a correction to point out a) the Cochrane review uses an outdated and overly broad definition of CFS that might not correlate with the illness diagnosed today and b) it conflates all exercise interventions into one homogenous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.

 

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.

 

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.

 

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.

 

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.

 

Untapped market, as no one else has anything, and hopefully all of us megarich pwME can be persuaded to open our gold and jewel reserves.

 

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.

 

https://twitter.com/user/status/1501914938348126213

 

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

 

Wouldnt it be marvellous if PEM was feeling 'ill at ease'!!!!!!!!!!!!!!!!