I think of lack of energy as the main problem, and that most other symptoms can be explained as resulting from it. It is not constant severe fatigue, but fatigue plus various other alarm signals and dysfunctions, often fluctuating, with abnormally fast and deep deterioration in response to...
Can you imagine the sheer stupidity of people who think "learning to feel tired" is a good way of thinking about a life-destroying illness?
Not to mention that we have a pretty good idea how "unlearning the illness" works as treatment approach because that's very similar to the CBT/GET...
Apparently some people need to believe in the lie that they can control the illness with their mind.
And they want to tell themselves the most inspiring story possible, and they seek confirmation and approval for their views from others (as well all do). So they want to tell a dramatic story...
I think it's possible to try too hard to accomodate people who are not interested in reality.
In a sense we all want the same thing, but the LP promoters aren't interested in dealing with reality (and that's also why they'll never be able to find a solution). They're more interested in telling...
I also don't think harms and benefits should require equal evidence.
Human psychology and business interests are strongly biased towards a treatment being effective. It's much more difficult for harm to be noticed.
If there are consistent reports of harm this needs to be taken far more...
This seems entirely consistent with how a toxin or pathogen would spread. People who know each other would be more likely to spend time together and visiting places where they can be exposed to the pathogen or toxin.
Awareness of a problem would also spread more easily between people that know...
I found this review interesting and some of the discussion could be relevant to the ME/CFS disease process.
The popularity of elimination diets in ME/CFS suggests that it would be good to look for the reasons behind this.
I wonder if the inability to tolerate eating in severe ME/CFS could be...
I noticed no one ever asks the patients with MUS what they want in an open-ended manner that allows all responses to come through.
Also I wonder when the MUS theorists will grasp that the symptoms are the reality of illness or combination of illnesses and that any discrepancy between model and...
The way it felt for me as male adolescent with (maybe) ME/CFS was that I wasn't allowed to be ill. There was a lot of pressure to go to school and my symptoms were reinterpreted to fit the belief system of the adults. I was not considered a credible witness to my own condition (and indeed, I was...
I'm curious what a study would find that counted rare variants in genes that could be relevant to ME/CFS. The genes where patients in comparison to controls have a larger number of rare variants could be the ones that are causally involved. The genes could be selected by using the existing...
I think we need studies using methods that have so far not been applied or only to a very limited degree. There is a lack of tissue studies.
Post-mortem studies (not just of the brain), muscle biopsies, skin biopsies, growing cells from patient skin and seeing if they're abnormal and stuff like...
Your intuition is not correct. Animal models of specific genetic defects can confirm the relationship between the mutation and the disease observed in humans. I've read many papers where such findings were described.
I share your concern over the well being of animals. Animal here can just mean...
I had my genome sequenced and am still in the process of trying to interpret the resulting mass of information. It's possible that actionable information will come out but obtaining it is hard work.
A typical person has between 4 and 5 million variants in their genome. The effect of most of...
DOCKopathies: A systematic review of the clinical pathologies associated with human DOCK pathogenic variants
The family of DOCK proteins are involved in intracellular signalling, including "Rho GTPases like RAC1, RHOA, WAVE/WASF1, and N‐WASP". Many of these pathways are involved in the...
DOCKopathies: A systematic review of the clinical pathologies associated with human DOCK pathogenic variants
https://onlinelibrary.wiley.com/doi/abs/10.1002/humu.24398
It was not on sci-hub when I checked yesterday.
Sounds like they're preparing to publish a study that is crap and, following in the steps of their UK colleagues, are seeding the idea of dangerous activists to put critics at a disadvantage.
Best response would be to publish an article where the critics precisely point out what is being done...
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