Discussion in 'PsychoSocial ME/CFS Research' started by strategist, Dec 19, 2019.
Not very impressive, Nancy Klimas.
Sci hub link:
Note - it's a pre-print still undergoing editing.
Sci hub, https://sci-hub.se/10.1016/j.jpsychores.2019.109893
what's going on(?) one step forward two steps backwards
So the "loPEM" cohort included those who said that they didn't have PEM.
That seems problematic to me - is there any reason it wouldn't be?
Surprise surprise. If you divide a group of Fukuda diagnosed CFS patients into those that have significant PEM and those who don't you find the ones with PEM are sicker, less able to work, and more depressed, probably as a result of being sicker and less able to work.
Why that leads to the conclusion that psychotherapy is the answer I don't know. Seems like a cop out to me. How about better care, better symptomatic treatment, less sigma, better access to disability benefits etc.
The only good thing from this is it demonstrates that nobody should be using Fukuda criteria for research.
No, but as she's second from last I'm guessing she just allowed some hack access to her cohort. Which brings up the point of...is it a good idea to refuse access to other 'researchers' when we always hear from the you-know-whos that nobody wants to get into the field? I am not interested in defending her but I sort of almost feel that we can't have it both ways. Also, I wonder if it's possible that she doesn't have the power to refuse access even if she thinks her cohort or samples will be used to produce results favorable to psychs.
From the Discussion section.
I just read this bit again. It's outrageous. How dare they suggest that it's psychological factors that make PEM worse and stop us engaging in activity. That shows a complete lack of understanding of PEM. I note they use references from White, Chalder et al as key sources of ideas.
Really poor use of nine people’s time. Any funding and salary time devoted to this should have/could have been devoted to science-based science.
The problem seems to be that the authors don't recognize that the ideas of White, Chalder etc ideas make no sense.
Also, you know what would fix all this psychological distress? Effective treatment of the illness.
This is the problem of the word 'malaise', I think. Outsiders coming to the area assume it's psychological malaise.
These remarks all seem very pertinent to me.
Uh, yes, the thing that literally means "more symptoms of greater intensity" also means more symptom burden because it's literally what it means. Also: greater volume is associated with more space to hold things. Being confused by basic definitions is not a good look here.
Literally the opposite. The very last thing that should be done with a high degree of PEM is doing more things. Good grief that's like suggesting that the more broken a bone currently is the more intensive physical rehabilitation should be.
Ya think? I mean it's literally something ME patients have been saying for decades and is also the most obvious common sense explanation but sure, it "could" be that more fuel leads to more intense fire.
I hope there is a good explanation for Klimas' name on this nonsense.
I think they also describe PEM somewhere in the paper as an increase in fatigue symptoms.. Don't have the energy to go back and check.
I got the feeling this was a paper and computer exercise. No actual patients given the opportunity of spending time with the researchers explaining how they experience PEM.
One of my textbooks has "post exertional fatigue" as a symptom of CFS. Patients will have an increase in fatigue lasting one or two days. Oh if only.
Seems to be a University of Miami paper. However Klimas does have her name on it. At least three recent papers where she has had her name on have been pretty poor in my opinion. This one, the 23andMe genetic predisposition one (uses 23andMe miscalls), and the Modelling one (no validation data set, very few hormone measurements in actual data).
so is this implying that people who have ME (CCC) as opposed to Fukuda CFS are the patients with 'mental health issues' (?)
an attempt to return to the 'status quo' before the 'resurgence' of the use of M.E.(?)
Haven't read the paper in detail, but they shouldn't be using Fukuda in the first place, if the CDC has endorsed the IOM/NAM definition that requires PEM as the hallmark symptom of ME/CFS.
Or, has the CDC not made up it's mind about dropping Fukuda? It's bizarre to have two differing case definitions in this one institution that has by some indications modernized its attitude and policies around ME. What's going on?
And, some in the study say they don't have PEM! Then they don't have ME, or "cfs". This study supports the debunked PACE trial: have a heterogeneous group of study subjects including those without ME ("cfs") but include depression, and who knows what else, and make recommendations for pwME based on studying people with different illnesses.
From the study: "psychological distress could, however, be a consequence of symptom burden" Brilliant to conclude that PEM - ie. feeling desperately dreadful, even more so than usual, would be upsetting. And, somehow counseling is supposed to make pwME feel better when they have these symptom increases. Or, maybe think them away!
I agree,@Sly Saint, certainly two steps back.
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