It's in the back of our mind but that would be a long-term project that will take a lot of effort. We are first going to proceed with posting these blog posts and then see afterward if there is enough material to start thinking about a book.
New blog post where we explore the myth of the schizophrenogenic mother.
Today schizophrenia is regarded as a brain disease but several decades ago, psychosomatic explanations were in vogue. The psychotic delusions of the great mathematician John Nash, for example, were blamed on fetus envy...
The main issue I have with the tryptophan trap hypothesis is that thus far there doesn't seem to be a reason to think it has anything to do with ME/CFS. So if they have data suggesting this IDO2 mutation is more common in ME/CFS patients that would be a first step. If they publish these...
It looks like they are going to recruit through ME/CFS patients organisations and ME/CFS clinicians so the results are probably going to be biased in that way.
In my view, looking at symptom clustering or overlap with a survey also isn't very reliable to understand a relationship between...
One a more positive note: it may be that diagnosis of POTS, MCAS, hEDS, ME/CFS, fibromyalgia, chronic lyme diagnoses all depends not so much on the patient's symptoms but on the doctors they have access to. In that case, it makes sense to group them together and look at the clinical...
I'm concerned for conclusions such as 'hEDS patients and ME/CFS show high symptoms overlap so perhaps they are related or the same illness' or 'POTS patients show a lot of gut issues just like MCAS patients suggesting a shared pathology, something to look into further' etc etc...
Because of...
To be frank it's these type of conclusions that I'm concerned about.
I think these difference will likely be affected by random statistical noise, unrepresentative recruiting into the study, and biases of the clinicians who give these diagnoses because they think these are valid and useful...
Yes, but if they are recruiting through ME/CFS patient organisations and clinicians then any data obtained in this way is likely to be misleading.
And even if a representative sample is obtained, I'm afraid symptom overlap is unlikely to give useful clues about POTS, MCAS, hEDS etc. It all...
ME Action just announced this study. I'm interested In what others think.
I'm a bit concerned. Without a representative sample, a survey about symptom clusters and the relation with hEDS, MCAS, POTS etc. are likely to give misleading answers.
There also another issue which I will try to...
I think I have this as well. After overextending cognitively (for example talking during a family gather) I can have muscle soreness in y legs the next day (even though I didn't use my legs for most of the day).
I think this would be something rather easy to put to the test.
From the studies that exist, we can be pretty sure that, if there is a treatment effect, it isn't going to be a large one. So I think there's a valid argument to state that it doesn't make sense that all those studies are reporting a moderate effect because they aren't powered to detect it so...
Perhaps there is nothing wrong with our energy system but there is something else, a bodily signal that gives us terribly symptoms whenever we try to do something.
As an analogy, take someone with severe back pain. He might not have an energy problem to take out the weed in his garden, but the...
You need quite a few trials in order to see if there's publication bias. This review combined all "behavioral interventions with a graded physical activity component" and said: "We found some indication of publication bias."
Differential effects of behavioral interventions with a graded...
Has there ever been a paper published where the authors enthusiastically claim to have developed a new treatment approach, then conduct interviews with patients on acceptability and where the patients say: "no, thanks this isn't very useful."
Not sure if papers like this one count as research...
Yes and I think the same is true for the FINE trial as well.
I agree. Even the controversial Cochrane review rated everything for GET as low to very low quality with the exception of fatigue measured with the Chalder Fatigue Scale shortly after treatment ended.
EDIT: the longer follow-ups of...
I understand. It's strange though because it seems to work fine for me (if I choose English as language)?
What exactly happens? You click on English as language on the page below and nothing happens?
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