Newton:Reduced cardiac volumes in CFS associate with plasma volume, not length of disease

[Valentijn]

This study will not stop the wittering on about deconditioning being the cause of CFS. Instead, people just diagnosed with an infection known to trigger ME/CFS need to be followed for a couple of years. There needs to be a comparison between people who go on to have ME/CFS and those who don't, in terms of activity levels before and during the acute illness and cardiac measures throughout the study period.

Or we can ignore the psychobabble entirely, and get on with biomedical research into pathology and treatments.

All the research in the world won't convince the psychobabblers. Since they don't give a damn about evidence, they'll never have any problem inserting vague and unprovable hypotheses about thoughts and behaviors actually contributing after all.

 

[Hutan]

True.
But it doesn't help us when researchers push their conclusions beyond what their data supports, no matter what side they are on.

 

[Sidereal]

Of course deconditioning is, at most, a secondary cause of symptoms experienced by PWME. ME comes first. For PWME who still walk around, it is probably of very little significance.

But to me, the point @panckage is making isn't controversial. The study included only people who had had CFS for 4 years or more. I think most people with ME/CFS, especially those with a sudden onset, will have made the biggest decrease in their activity levels by year 4.

So, any change as a result of deconditioning is likely to be most apparent in the first 4 years of the illness. And this study didn't have any people who had only been ill for 4 years or less. So, it doesn't have the data to draw a conclusion about deconditioning from the observed lack of relationship between the length of illness (4 to 14 years) and cardiac volumes.

This study will not stop the wittering on about deconditioning being the cause of CFS. Instead, people just diagnosed with an infection known to trigger ME/CFS need to be followed for a couple of years. There needs to be a comparison between people who go on to have ME/CFS and those who don't, in terms of activity levels before and during the acute illness and cardiac measures throughout the study period.

While I agree that deconditioning is not the cause of low stroke volume and hypovolemia in ME/CFS, my first thought when reading this paper is that their data do not support their conclusions for the reasons you've outlined. I am surprised the reviewers let this obvious point slip by them.

 

[Simon]

The length someone has CFS does not indicate its severity ....

I'm baffled by the idea the deconditioning comes first, but I agree length isn't a useful variable when discussing deconditioning. It's activity levels that affect deconditioning, so activity data is needed to support conclusions on deconditioning - ideally actigraphy but something like the SF36 physical function scale would do too.

Increasing fatigue severity correlated negatively with lower PV (p=0.04; r2=0.2)

The study didn't correct for mulitple comparisons on this, so that marginal p value doesn't really show us much - and the correlation level is low - just look at the data.

Good to know this paper was a spin off from an observational study, hopefully there will be more substance to follow.

 

[A.B.]

Thanks @Simon and @Sidereal and @Hutan for scrutinizing the paper.

It's in our best interest to remain skeptical even when we like the findings and its conclusions.

 

[Comet]

I just wanted to chime in and mention that although my activity level was significantly impaired from the get-go, I didn't become mostly house bound until about 7 years into my illness. I had no choice but to work semi - full time, do errands, prepare meals, do laundry, etc, when I first got sick (and I still don't have a choice).

After that, I was no longer able to work outside my home. I've experienced a slow decline since then, becoming mostly bed bound about 5 - 6 years ago (about 10 years into ME). But even now I still have to manage the household as best as I can, do the errands, laundry, cook for myself, etc.

I don't believe I became seriously deconditioned until about a decade or so into my illness. And even though I don't deny deconditioning at this point, I am forced to do more activity than I should.

So I'm not trying to debate the statistics or data used to create the paper. Just pointing out that it might take longer that one thinks for extreme deconditioning to set in, even in a case of moderate to severe illness.

 

[John Mac]

Cort has posted on this study.

http://www.healthrising.org/blog/2016/06/27/chronic-fatigue-syndrome-small-heart-disease/

" The big clue to all this appears to be the reduced left ventricle mass. If ME/CFS patients were deconditioned their entire heart should be smaller but only the left ventricle is. The left ventricle is where blood from the veins enters the heart. If blood flows to the LV are reduced the LV is going to be smaller simply because it’s not working out as much."

I wonder if this reduced blood flow fits in with Fluge & Mella's hypothesis that our arteries don't allow increased blood flow because they aren't dilating properly?

 

[voner]

@John Mac, thanks for pointing out Corts article. I learned a lot. I really liked Cort's recollection of research by Dr. Peckerman on the heart and blood flows and how Cort tied it to Dr. Newton's and Miwa's publications. I had forgotten about Dr. Peckerman.

 

[Little Bluestem]

Finally for patients using ampligen successfully. Did you just take a big leap of faith in trying the treatment or are there some tests or indicators that show it will help you, rather than make you worse.

You might get a better response to this question if you put it in its own thread.

 

[Navid]

You might get a better response to this question if you put it in its own thread.

Thanks for the suggestion : )