I haven't made peace, I've tried so many things tests and treatments wise. More than 99% of patients probably. But now I have no energy to try...
I really hope that it's some obscure immune dysfunction causing the illness (which GWAS might help find), because if it's really just a chronic...
I have had surgery complications recently that forced me to stay in bed completely horizontal 24/7 for months, after about a month I was starting...
Scheibenbogen is doing the correct thing trying immune drugs, but we would need 10 Scheibenbogens to have a realistic hope of getting treatments...
I think analyzing the whole genome of severe ME patients to fish for rare genetic illnesses that can cause ME is a worthwhile thing to do. It's...
Interesting, where I live (Italy) seems to be an outlier then. We have zero funds for ME research here. There are, very occasionally, studies made...
Another way to say it would be this: There is a lack of attention to detail in medicine. Is it because of psychosomatics, or are the...
For those that even know ME/CFS exists, sure, but did they get to that belief through conviction or simply because if you can't figure something...
Aside from decodeME, which I think is a really promising study, there is no rational reason to think otherwise. When 99.9% of the scientific...
But there is no evidence of this, and most importantly no evidence that your counseling is anything more than a resource sink.
Interesting that the whole psychosomatic/catastrophism theory basically starts with the premise that you don't do things even if you could, and...
A "good day" is me trying to learn something while laying in bed, feeling like I have done an intense full body workout from doing 0.1% of the...
There are so many doctors who think CFS is vague fatigue symptoms associated with not being disciplined enough in life. Not necessarily...
Where I live, nobody has discouraged anyone from engaging with patient orgs and yet our advocacy is still 20 times worse than what you have in the...
I think our advocacy needs to be overhauled from the ground up. Lone patients telling people they know about the illness will get us nowhere. We...
Yes, that's the point. Even if you have a psychologist or psychiatrist certify that your illness isn't mental (even more than one), they will say...
So we literally can't even get their attention? How disappointing...
While we are talking about this, I want to ask you something. As you have implied in your post, the most capable, science oriented psychiatrists...
I mean, it's not like having a bunch of scattered patients doing fb fundraisers gets you anywhere anyway. What is needed is a large scale...
I think there are many reasons for this: - lack of acknowledgement from doctors, BPS propaganda, means it's hard to persuade people to donate and...
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