Friday, April 11, 2014

"Pathways to Prevention for ME/CFS"

I posted a comment on the CFIDS website regarding "Pathways to Prevention for ME/CFS":
Prevention? Prevention needs some sense of the cause(s), if I am not mistaken.

Yes, there are tentative, speculative causes. But all the so far presented "definitive" causes of ME/CFS share one thing in my eyes: complete lack of credibility. There is no trustworthy research pointing to an cause.

And would prevention look like?

For pathogens, it would be the prevention of the spreading of that pathogen. Problem is, there is no identified pathogen. Horning/Lipkin draw a blank. So against which pathogen do you want to prevent? Problem is, there are no known ones.

Sure, the psych*-doctors know that it is the patient who is to blame. Excuse my sarcasm, but to them it is the patient who is doing something wrong, in his/her wicked ways, as patients are – the patients simply "need" guidance by professional psych*-doctors. So their "prevention" would be some form of "education". Maybe teaching "resilience to fatigue"? Problem is, they think the disease exists in the minds of their patients, but their disease model exists only in the doctor's heads, not in reality.

Or do you want to somehow target groups at risk, and do something? Problem is, there are no identified risk groups. (Again pardon my sarcasm) Sure, the psych*-doctors will tell you it is crazy women who are at risk, but that is not reality – everybody is "at risk".

Did I miss some school of thought here? Oh, maybe the mainstream nutritional disciples will scare us of cholesterol, or saturated fat, or whatever they think is the current bogey man. Problem is, these things aren't the cause either.

So you need some preformed notions about ME/CFS to even consider "prevention". And the problem is that none of those preformed notions about ME/CFS are in any way backed up by robust studies.

It is noble to think about preventing ME/CFS, but unless we know more about the cause(s), any talk about "prevention" is pure fantasy, a waste of resources, and potentially quite harmful to the patient.

Try to find out affected pathways, try to find out cause(s) – and demand loud and clear that any prevention is based on clearly identified pathways and causes. I am afraid that any result of such a conference will be: "Doctors need to teach crazy women how to avoid tormenting their doctors with their problems." They might formulate it with more psych*-medical jargon, so it doesn't sound so offensive.

The CFIDS needs to be highly critical of this – otherwise this could have catastrophic effects on the people with ME/CFS.


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