Abnormal blood lactate accumulation during repeated exercise testing in ME/CFS, 2019, Lien et al

Kalliope said:
The "patient organisation" Recovery Norge (for patients who have improved from ME by their own efforts and which is lead by MD Henrik Vogt) has asked 9 anonymous members whether it's true that ME patients can't tolerate activity. It believe this is meant as a critique to Lien's study.
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I read some of the responses. They could be summarized with: they all agreed that activity was problematic, until they started thinking positively and stopped "doing ME" and then they were cured.
 
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Barry said:
I agree. My wife actually pushes herself hard within her limits, but she always seems to understand those limits well. My impression is she typically pushes herself to the edge of PEM and maybe into it slightly, unless external circumstances (family visits etc) mean she gets loaded further, then dips more heavily into PEM. This is a major part of my wife's staying-sane strategy.
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I liked your " break even point" as a way of explaining the very fine balance of activity
 
The newspaper Dagbladet has written an article about the study. It's paywalled, so here's a summary:

First there's a short introduction of the study

She believes the study supports the fact that ME is a physical illness and gives indications that there is a fault in the energy conversion in the body.

- It is difficult to understand how the psyche should affect exercise capacity and lactate production. I do not perceive ME as a mental illness primarily, but it is clear that having such a serious illness and not being believed can also affect the psyche, says Lien.
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Then follows some comments from researchers known for they biopsychosocial approach to ME. First out is professor Signe Flottorp.

- The study author says that this shows that ME is not a mental illness, but that there is a default in the patient's energy metabolism in the body?

- This is of course just nonsense. It is too easy to conclude that way. ME patients are deconditioned and of course in poor shape. Finding differences in physical parameters does not mean that it is a causal relationship. It may be due to the way they live, not the disease itself, Flottorp replies.

ME sufferers are normally little physically active - one of the criteria for diagnosis is so-called exertion-induced exacerbation - that they become worse after exertion.

- The fact that you find bodily reactions does not necessarily mean that the disease is not psychological. The distinction between physical and mental illnesses is unfortunate. Mental disorders can also have some physical effects, and many physical disorders can be affected by, for example. mental stress, she says.
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Then Wyller weighs in
With ME, both biology, psychology and social play a role, a typical bio-psycho-social problem, Wyller believes.

- It's about the brain's experience of our body, says the senior doctor.

There are many indications that moderate amounts of activity is good for this group of patients, Wyller believes.

- There is no reason to doubt that they feel activity boosts the ailments, but we know that inactivity has physical and mental consequences. Those who have chronic back pain have pain when getting started with moving around, but it is still good for them. The fact that sitting or quiet is not promoting health is obvious, he says.
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Egil Fors is interviewed towards the end about his recent study on neuropsychological dysfunction in CFS (discussed here) where he says that the study shows that ME patients have some problems with psychomotoric speed and attention, but otherwise a normal memory, including working memory, simultaneous capacity and other cognitive conditions.

Nina Groven with the trial on increased hsCRP in patients with CFS and with fibromyalgia (discussed here) says the the marker is increased, but still within normal levels and the study doesn't say anything about cause-effect.
 
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The distinction between physical and mental illnesses is unfortunate. Mental disorders can also have some physical effects, and many physical disorders can be affected by, for example. mental stress, she says.

This is a rather beautiful illustration of double-think. So if it is unfortunate to talk of mental and physical illness why talk of them?

It is a bit like saying 'I have never been to Russia. I only visited Moscow to make trade deals.'
 
Signe Flottorp is at National Institute of Public Health, and involved in the Cochrane Norway project connected to the institute.
She also have been involved in doing litterature searches for ME/CFS (a service they provide).

I find her statement worrying, as for the impending update to the exercise review :(

(english: )
https://www.fhi.no/en/about/departm...-technology-assessments/signe-agnes-flottorp/


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Also, they are playing into rethorics. In the norwegian public, there have been mainly moderate to severe/very severe patients speaking out. While the study obviously was done on mild patients, that we know are as physical active as inactive healthy people.
 
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inox said:
Signe Flottorp is at National Institute of Public Health, and involved in the Cochrane Norway project connected to the institute.
She also have been involved in doing litterature searches for ME/CFS (a service they provide).

I find her statement worrying, as for the impending update to the exercise review :(

(english: )
https://www.fhi.no/en/about/departm...-technology-assessments/signe-agnes-flottorp/


edit:
Also, they are playing into rethorics. In the norwegian public, there have been mainly moderate to severe/very severe patients speaking out. While the study obviously was done on mild patients, that we know are as physical active as inactive healthy people.
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Yes, I was thinking the same. She's head of department of systematic reviews at the Norwegian Institute of Public Health, so I believe this makes her the boss to Lillebeth Larun, main author of the Cochrane review on ME and GET.
 
Jonathan Edwards said:
So if it is unfortunate to talk of mental and physical illness why talk of them?
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They've carved out their niche in society and it depends on them being experts in mental disorders. That role must be separate from that of a neurologist or neurologists would replace them.

Not that this necessarily bad. They're just hypocrites.
 
strategist said:
They've carved out their niche in society and it depends on them being experts in mental disorders. That role must be separate from that of a neurologist or neurologists would replace them.

Not that this necessarily bad. They're just hypocrites.
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Just note that our local bps-crows mainly consists of non-psychologist, mostly doctors. Flottorp, who made that statement, is a medical doctor.
 
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This Flottorp is pretty scary.

I don’t know what these people bring to the table except the same old rhetorics? They are obsessed with not making distinctions physical vs. mental, and that’s about it. Knowing the development of medicine, new insights to interaction among bodily systems and such, I guess, in principle it is ok to warn of making clearcut distinctions. But medicine had them for how long, and we still have them, cause they make some sense. Or? And it’s kind of pathetic that this discussion always and only is about ME. If so obsessed with this, why not warn about not making distinctions on every disease there is?
 
Esther12 said:
Sorry, what statement was that?
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From the article mentioned above:

- The study author says that this shows that ME is not a mental illness, but that there is a default in the patient's energy metabolism in the body?

- This is of course just nonsense. It is too easy to conclude that way. ME patients are deconditioned and of course in poor shape. Finding differences in physical parameters does not mean that it is a causal relationship. It may be due to the way they live, not the disease itself, Flottorp replies.

ME sufferers are normally little physically active - one of the criteria for diagnosis is so-called exertion-induced exacerbation - that they become worse after exertion.

- The fact that you find bodily reactions does not necessarily mean that the disease is not psychological. The distinction between physical and mental illnesses is unfortunate. Mental disorders can also have some physical effects, and many physical disorders can be affected by, for example. mental stress, she says.
 
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