Denmark: Article in Videnskabdk: Chronic Fatigue Syndrome: Does exercise help, or does it make people worse?

Kalliope

Kalliope

Senior Member (Voting Rights)
Big article about ME and graded exercise therapy in the Danish news site for research; Videnskab.dk

The Cochrane review is discussed, and author Lillebeth Larun is interviewed. The article mentions the planned going over of her review at Cochrane and apparently she is currently working on making a complete overview of studies of physiological causes to ME..

“It seems that you have to stay physically active to maintain the effect. But it may not be that surprising, 'says Lillebeth Larun.

Only one study involving a total of 641 patients has examined the side effects of rehabilitation.

"It is the largest of the studies and very well conducted, and it did not find any more side or adverse effects than in the control group. But more research is clearly needed to conclude if there are adverse effects, ”says Lillebeth Larun.

Vice President of the Danish ME Association, Cathrine Engsig is also interviewed:
The patients in the graduated rehabilitation study have been diagnosed on the basis of broad criteria, so it's probably burnt out and tired patients - they probably benefit from rehabilitation. But ME is a different group of patients,

As is Per Fink
"But until we may have a more effective treatment, we have to use what is evident, and that is graduated rehabilitation and cognitive behavioral therapy,"

A cell biologist and associate professor at Aarhus University, Rikke Katrine Jentoft Olsen researches cell changes in patients with metabolic disorders says:

“I do research on metabolic disorders. And patients with the condition of metabolic disorders can be aggravated by activity, and they exhaust more quickly. Patients cannot be made healthy by exercise. Dietary therapy and co-factors / vitamins that can restore mitochondrial function are needed to alleviate their symptoms. Other patients tolerate activity fine. It cannot be ruled out that something similar could be at stake for ME patients, ”

The Swedish ME researcher Jonas Bergquist says
“Several researchers from different countries have shown. Maybe physical activity can exacerbate inflammation and damage cells. Therefore, I think it can be harmful to patients if they are pressed"

Videnskabdk: Kronisk træthedssyndrom: Hjælper genoptræning, eller gør det folk mere syge?
Google translation: Chronic Fatigue Syndrome: Does exercise help, or does it make people worse?
 
Tweet says:
Graded exercise and therapy is the only evidence based treatment of chronic fatigue syndrome, but the patient organisations disagree and mean that graded excise is dangerous, and they're backed up by several researchers.

The journalist, Aarhus University and the Norwegian Institute of Public Health are tagged.

 
Kalliope said:
"It is the largest of the studies and very well conducted, and it did not find any more side or adverse effects than in the control group. But more research is clearly needed to conclude if there are adverse effects, ”says Lillebeth Larun.
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[Bolding mine]

Yes, it's funny what you don't find when you don't look for it isn't it?

I agree research is needed to conclude if there are adverse effects. It's a shame really, if clinics & trials had been designed and run properly then that data would be there. How many more patients would you like to see condemned to a life sentence of being a virtual prisoner in their own beds because you couldn't be bothered to design trials properly?

If there is going to be further research I do hope the consent clearly spells out that there may well be very significant and possibly permanent worsening of the condition for participants. Otherwise itjust isn't informed consent.

Also the definition of harm and adverse event, needs to be agreed with patients - after all it's their lives and health being adversely affected.
 
Facebook post says (hastily translated)

Graded excise and therapy is the only evidence based treatment against chronic fatigue syndrome, also known as Myalgic Encephalomyelitis (ME).

But the patient organisations mean, that graded exercise is harmful, and they are backed by several researchers.

Assistant professor at the Norwegian Institute of Public Health Lillebeth Larun has made an overview, a so-called Cochrane review - of research on exercise of patients with chronic fatigue syndrome. It's the largest and most solid scientific examination about chronic fatigue syndrome.

"There's evidence that graded exercise has a moderate effect on fatigue, when compared with patients who don't exercise. On the other hand we lack good studies on side effects" she says to Videnskabdk.

But the Danish ME Association is far from happy with the current review.

The new review is being criticised by among others patient organisations for not saying anything about how graded excise effects ME-patients.

The patients in the new review is in fact not diagnosed by the most recent diagnostic criteria for ME, where extreme fatigue and deterioration (Post-Exertional Malaise) after physical activity is a main symptom.

The Danish ME Association is backed up by among others Rikke Katrine Jentoft Olsen, which is a cell biologist and teacher at Aarhus Universitet.

"I do research on metabolic diseases. Patients with metabolic diseases can deteriorate by activity, and they get fatigue quicker. The patients can be made well by exercise. Diets and co factors/vitamins, which can restore the mitochondria function, is necessary in order to help with their symptoms. Other patients tolerate exercise fine. It can't be excluded, that something similar may be at play for ME-patients" she says to Videnskabdk.

Cochrane has acknowledge the critic against the review which was published in October 2019, and has now decided to make a new review.

The article also has other scientists's views, and we have looked closer at the current research into chronic fatigue syndrome.

 
Invisible Woman said:
If there is going to be further research I do hope the consent clearly spells out that there may well be very significant and possibly permanent worsening of the condition for participants. Otherwise itjust isn't informed consent.
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I think (hope) ethical approval would be a real problem to get nowadays. Given that there isn't any long term evidence of benefit of graded exercise/activity over standard "care", what justification can there be for doing something that there is a lot of anecdotal evidence of harm for? Also, what patient group nowadays would support such research? If anything, if the patients found out about such a trial then there is likely to be a campaign against it.
 
Andy said:
what patient group nowadays would support such research?
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Sadly, I'd put money on AfME......

The problem is these sods get access to the very bewildered and newly diagnosed who understandably will do anything they say to get better and will probably even be relieved it's nothing serious and a bit of taking themselves in hand will sort it out. By the time they know better it's too late.
 
Andy said:
I think (hope) ethical approval would be a real problem to get nowadays. Given that there isn't any long term evidence of benefit of graded exercise/activity over standard "care", what justification can there be for doing something that there is a lot of anecdotal evidence of harm for?
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I wish that were true, but look at FITNET, currently ongoing, and the roll out of IAPT in the UK which includes CBT/GET for ME/CFS. I bet there are still spin off studies related to those getting approval without any measures of harm built in.
 
Invisible Woman said:
Sadly, I'd put money on AfME......
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Well, OK, but I wouldn't.

Trish said:
I wish that were true, but look at FITNET, currently ongoing
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Ethics approval given Oct 2016, a lot has happened, and is still happening, since then.

Trish said:
the roll out of IAPT in the UK which includes CBT/GET for ME/CFS
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Well, that is based on PACE and NICE guidelines, which is all historic. A change in the guidelines in the way that we hope for would be another game changer.
 
Trish said:
I hope you're right, Andy.
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Me too!

I really don't think we're there yet though. Ironically, until the risk of harm and the potential level of harm is finally acknowledged, they'll continue on. There's no risk to them.

It's like that old song.... " there's a hole in the bucket... "

I am hoping for some positive changes from NICE, but I'm not expecting we'll get everything we should.
 
Andy said:
I think (hope) ethical approval would be a real problem to get nowadays. Given that there isn't any long term evidence of benefit of graded exercise/activity over standard "care", what justification can there be for doing something that there is a lot of anecdotal evidence of harm for?
Click to expand...

I'll add that it's grossly unethical even without harm in terms of protracted reduction in functioning.

Pushing to increase activity is always acknowledged in the BPS theories to increase symptoms distressingly. Even if this is taken to be transient and not to worsen longer-term outcomes, it is unethical to inflict suffering upon people when there is known to be no benefit to them, and no insight to be gained so as to hypothetically help patients as a whole in the future.

You couldn't just waterboard diabetics and then say: 'Well, it didn't actually hurt them or make their diabetes worse. We should keep doing it... uh, for their own good'.

Sorry if this is beating a dead horse.
 
We knew about the planned Larun review on causes to ME... it features some of the usual bullshit artists:

Siri Mjaaland

Kjetil Gundro Brurberg

Inger Johanne Landsjøåsen Bakken

Signe Agnes Flottorp
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https://www.fhi.no/prosjekter/syste...ortering-om-arsaker-til-kronisk-utmattelsess/

Some more details (only a brief summary in English): https://www.fhi.no/contentassets/99...k-systematsik-litteratursok-med-sortering.pdf

We can expect more credulous acceptance of poor quality and spin, particularly given the above judgement of PACE: "the largest of the studies and very well conducted".

I'd assume Norwegian groups are already dreading this?
 
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