Discussion in 'BioMedical ME/CFS Research' started by Sly Saint, Jan 31, 2021.
I'm starting to see the frame that the authors are working within.
So they are looking to see if there are identifiable sub-groups of chronic/relapsing fatigue.
This is how they assessed PEM
I could have saved myself the bother of reading what I did and just spotted that Wyller is one of the authors.
Wyller is co-author. Here's from my notes from attending a lecture by him in 2019:
He believes fatigue is fatigue. It makes no sense to try splitting the long lasting fatigues into a lot of sub groups based on diagnoses. He prefers simple diagnostic criteria and criticises the Canadian criteria.
He believes that if you have a long term fatigue consequential for daily activities which can't be explained by other current physiological or psychological illnesses, then you have an unexplained fatigue or what is called CFS/ME. A lot of British researchers agree with him.
It’s important to offer empathy, hope and explanations. It’s a serious condition and there’s no solutions as simply thinking oneself better. But one can recover.
Many children and adolescents, in fact most of them, recover. It's important to tell them that, considering the importance of expectations.
Full notes shared on the forum here.
If I had the energy I'd compare this to their previous work on why the criteria doesn't matter, but I can't say I feel like it. Seems like many of the same arguments.
It's nice that the researchers seemed to end up understanding that PEM is a fundamental symptom of ME/CFS. It's a shame they didn't know that before choosing to spend their time on a study characterising CFS.
No, 'These results question the clinical usefulness of searching for CFS subgroups with the variables that we used.'
Oh yeah really nice that this self-proclaimed expert is noticing *checks note* the hallmark symptom of the disease he claims expertise in. I guess they don't have a choice to talk about it now that the cat's out of the bag with LC. Funny that it says "than previously understood" when they are quite literally talking about themselves who simply refused to hear anything about it and laughed it off as somatization or whatever. "Nobody knew that", says person who genuinely did not know that despite pretending to be an expert on the topic.
I, an astrophysicist, noticed today for the first time that the Sun, get this, is the same thing as those other shiny things in the sky. Can you imagine that?! I certainly did not and it's my job!
Give a decade or two and he will even start to notice it may be related to infections somehow. I really am looking forward to the first occurrence of one of them seriously writing that fatigue is actually not the only symptom of ME and how nobody noticed that before. Real galactic brains we have here.
Around 2050 they may even start noticing this brain smoke, or something. Which of course nobody noticed before.
You have captured the basic, dreadful, unscientific ghastliness of what we face. "Current physiological illnesses" indeed! They do not believe ME to be a physiological disease so there is nothing to explain the fatigue! I do not believe that arsenic is poisonous so the victim must have died because they stopped wanting to live. I do not believe that heavier than air objects can fly so magic must exist to get people from the US to the UK.
I think few respected ME/CFS experts would think it is a good idea to make subgroups based on the markers and measurements used in this study. As far as I'm aware nobody is doing so or proposing to make that subdivision.
Most ME/CFS experts, however, think it is a good idea to differentiate a group suffering from severe chronic disability, post-exertional malaise, cognitive dysfunction, etc. from other patients who suffer from unexplained chronic fatigue without these characteristics. That's probably the reason why some are using the Canadian Consensus Criteria.
So if the Canadian criteria don't correlate well with the subdivision that most would think is not advised, then this is what is to be expected and not really an argument against those criteria.
I think the authors of this paper do have a point in criticizing the authors of the Canadian and International Consensus Criteria for arguing in terms of pathological processes such as low-grade inflammation or metabolism impairments instead of simply focusing on clinical characterics.
Notwithstanding this, (that PEM is fundamental to a definition of ME/CFS), I have been wondering if ME/CFS symptoms are a particular subset of possible symptoms arising from related processes during and after an infection.
One of the prompts for the wondering is the case of chikungunya on Reunion Island where large numbers of people have been reported with a spectrum of symptoms, including those grouped as 'fibromyalgia', 'chronic fatigue' and 'ME/CFS', as well as small numbers of cases of overt arthritis-type damage, after chikungunya infection. So, the idea is that there is some common mechanism accounting for quite a broad range of symptoms currently grouped into multiple named illnesses - perhaps even things like GBS - (along with different mechanisms that produce the variety of pathology phenotypes).
I'm not saying this is so, just musing aloud really.
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