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

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.

 

Ive been thinking positively for 5 years and i still crash from get, i dont think I have the same disease as these anonymous recovered patients

 

Yes, apparently all we have to do is stop paying attention to symptoms and then the symptoms will magically disappear!

 

I liked your " break even point" as a way of explaining the very fine balance of activity

 

I have been paying attention to my symptoms in a negative and grumpy way for the last 5 years and have improved significantly.

 

My memory is so bad I forget that I can't do things so it keeps taking me by surprise!

 

For so many years I thought things would be different "this time" if I went over my limits.

I eventually had to stick a "STOP" magnet on my fridge as a reminder.

 

This!

 

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

Then follows some comments from researchers known for they biopsychosocial approach to ME. First out is professor Signe Flottorp.

Then Wyller weighs in

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.

 

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/


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.

 

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.

 

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.

 

Just note that our local bps-crows mainly consists of non-psychologist, mostly doctors. Flottorp, who made that statement, is a medical doctor.

 

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?

 

Sorry, what statement was that?

 

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.

 

The article has now been edited and the "nonsense"-comment from Flottorp has been removed.

 

Oh, I thought it was something specific to news about the Cochrane review. Thanks.

 

Ah, no - sorry for the confusion. Just me worrying about the overall attitudes at the National Institute of Public Health, beeing quite a bit nervouse about what to come. We've heard nothing yet, that I'm aware of.