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Ron now wants to collaborate with a neurologist whose interest is things in the blood that affect the brain (I'm paraphrasing)

There will be similar articles on how a cabal of CBT/GET believers hindered progress. They started from a conclusion that was based on opinion, not research. They presented ME as problem of illness beliefs, curable with psychotherapy. That is a fairly direct way of saying that any money spent...

If you take the hypermobility out, does what is left resemble a gradual onset variant ME/CFS? Do we know that these patients don't just have ME/CFS but with some minor structural abnormalities that are of little importance? I do have a few of these I think. Like empty sella, pectus excavatus...

Is it too early for a SS31 for ME/CFS clinical trial?

That SS31 prevents the abnormal reaction to salt stress would be consistent with a mitochondrial problem. SS31 is described as "mitochondrial antioxidant" and "mitochondria-targeted" molecule in the literature.

Remember that diagnostic criteria are not supposed to be a complete description of an illness. The diagnostic criteria for multiple sclerosis for example do not list symptoms but focus on a pattern of brain lesions and attacks. This point is I think important because the misconception that...

Ron Davis on CCI: he talked with physicians that specialize in ME/CFS and they said it's only a fraction of patients that may have this. There is a problem because if only some have it, why are the two patient populations the same [I think he means in terms of symptoms, history, etc]. Something...

Patients want to believe there is a way to get better. What easier way to get better than just thinking differently? So patients and therapists reinforce each other's unrealistic hope that some mind trick can cure a horrible illness.

The ER could have easily diagnosed my POTS I think if they had been trained to do that. Instead they were trained to suspect intangible psychosocial factors after things like a heart attack had been ruled out. I remember there was a paper that suggested in ME/CFS the most common reason to go to...

@FMMM1 thank you. To answer your previous question, I think we can influence EUROMENE just by communicating with its members. If it was necessary we could also create a petition (in a situation where for example opinion within EUROMENE was divided between GET or no GET, but I hope that will...

And yet these psychosocial factors are so nebulous that the conclusion that an illness is (supposedly) a conversion reaction is reached only when no biomedical cause can be found. Which is entirely consistent with there being no conversion reaction whatsoever and a 100% biomedical cause because...

I would write to MEPs if I could tell them exactly what I'm actually asking them to do. I want them to attend some meeting and support a proposal. What meeting, what proposal? Where can they learn about this so that they can decide whether this is a sensible proposal or not? They will not spend...

Can you create a new thread with more information on this? If people are to ask their MEP for help, they need to be able to tell what to do and when and who can answer further questions.

I believe it could grow into a very good organization for us patients, especially if we help shape it. We need to tell them what we want.

The psychological harm of continuously trying to function normally because that is what the patient is told is needed, only to end up failing every time, also needs to be considered. I suspect it can be bad enough to lead to suicide.

One thing that I found interesting is that the IOM criteria were described the only ones to be based on research. At the same time they don't seem to be particularly popular among the participants.

The awfulness of this paper is not in the idea of collecting information on how each country does things when it comes to ME/CFS. That is useful. The message should have been that there is an extreme state of neglect and that the fact that every country does things differently reflects a...

I thought this was an awful paper. Very disappointing to see this produced under the EUROMENE banner. We need something better.

Between the current activity levels and the idividual daily activity limit there may be room to increase activity levels for some patients, but I don't think there is usually much room, and it seems overexertion is a more common problem. Activity within the tolerable limit seems to be beneficial.

It appears that repeated overexertion does not desensitize the patient towards exertion as some seem to think, but it sensitizes them. There also seems to be something like a daily activity limit, after which activity is overexertion. GET is designed to make patients worse, first getting them...