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If we're militant, we have every reason to be so. Compared to the Aids movement, we are gentle - maybe too gentle. Well, nice. Now it's the good vs. bad stereotyping. But don't forget we're not living in the 80s anymore. Today, if we acted like the Aids movement, we'd probably be in trouble...

What's the gain of this 6-subclass-category? And I didn't understand the symptom selection criteria for building these classes. Does someone?

For those (like me) who don't know what intracranial compliance is: https://radiopaedia.org/articles/intracranial-compliance

I think this is something we and others - especially doctors - need to realky understand: Marking by me. If I remember correctly there was (and is) the belief that a disease will always present uniquely. Of course, this can't be correct. And here is one example.

When reading this it always sounds so promising. But are we really that far? What is a bit frustrating is the funding issue - Klimas' research on GWI shows without money nothing's happening. Did she really find a solution to GWI?

This is just a fantastic project, @Mike Harley. Deep thanks to you for what you're doing for all people with ME. This is very moving.

Was this your impression, that this article stated gluten sensitivity as a cause?

I would be interested if there is a connection between mast cells and ME, or better, if and which role mast cells play in ME. In the end, mast cells are a part of the immune system, too, so intuitively I don't see why there shouldn't be a link to ME. Does someone know how it is in HIV/Aids/other...

I'd like to be a research nurse :angel:

This is shocking and telling.

It would also fit my n=1 observation in a family member who definitely has chronic herpes infections, including Varizella Zoster, where differerent nerves (e.g. the trigeminal one) are affected.

Well, I would even agree - BUT. There are obviously so many people who profit from avoiding certain food because they have trouble when eating it. I love wheat stuff - but I get diarrhea. I love milk stuff - again, diarrhea. Soy - diarrhea, heartburn, nausea; the same with sugar. Not to mention...

Interesting article. Thanks @Hip for your comment. The hypothesis - a herpes virus (Varizella Zoster) in the root ganglia - would fit the autopsy findings in those who died from ME. Wouldn't it?

I find this unsatisfactory. As others have said, there is no PEM; also to me, it sounds very "PACE like" (i.e. treatment/management of a psychological disease), fatigue-centered - just my impression. Recommendation of SF-36 for assessing QUALITY OF LIFE is in my eyes not suitable.

This sounds a bit like ME/CFS is a wastebucket diagnosis - something some doctors told me, and I disagreed. But here it is. And there are clinical criteria for ME and CFS. There is no biomarker. There are markers that could underline a diagnosis. Actually, this sentence is puzzling. Argh. I...

I am gluten, soy, meat and most of the time dairy free. And yes - it's hard. But I have so much less problems it's worth it. And there are nice alternatives. (By the way, I have problems with too much protein, fat and carbohydrates, too. So that leaves out a high-fat, low-carb or whatever diet.)...

I once tried a subcutaneous injection (as e.g. Myhill suggests), and for me it was too painful. (It was really terrible.) For weeks I had a bump. I can't recommend it. So it should be i.v. or i.m.

I am not at Twitter and don't understand it :( but thank you

Will you link here? This is terrible news, for all of us I feel.

This reminds me of guidelines about how to tell patients that they have a psychosomatic/psychological disorder: Tell them you take them seriously, that their symptoms aren't imagined. Then explain them what's going on ("Feelings and thoughts can have a substantial impact on your body" blah blah)...