Thanks very much!Originally Posted by teejkay
Indeed: My main website -- https://maartensz.org/ -- has currently a bit less than 256 MB of mostly text, which is a bit less than 1% of what it may carry...
So YES, there is a lot of space available on my site, and it was started 14 years ago
(1) to defend myself
(2) to write about what interests and concerns me personally & intellectually and
(3) to write about ME.
Also, I don't mind one bit about being controversial (as you may have noticed), especially not on my site.
So... I really think we should start organizing rollin' our own, on the lines of
"Everything a patient and doctor should know about ME, but was lied about when they asked"
sort of section, that is, in fact two:
(A) for suggesting texts (mostly internet-material, I think) and discussing them on the forum
(B) for including the texts most on the forum agree to, rather like the present Library.
And I think this forum can and should do the same for remedies, therapies, drugs, supplements, diets... what have you, with similar (A) and (B), simply to have
(I) good standard references of reliable medical knowledge about and for medical people and patients, and
(II) good standard references of - more or less, for some - effective (partial) remedies of various kinds.
If nobody starts a thread or two on this - or indeed a category or two RSN, say
- Phoenix Forums Recommended Texts About ME
- Phoenix Forums (partial) Remedies For ME
under the Treatment and Therapy section (any takers: IslandFinn, Kim, Andrew, Dr. Yes??) or indeed in a whole new main section, say "Recommended By The Phoenix Forums" I'll start it RSN.
For this seems to be one of the things this forum can do, that also needs doing.
Let's set our own standards:
The Phoenix Forums have the brains, the knowledge, the people, and the courage to do it!
It's just a matter of doing it, and it may be done in a month or two, judging by my experiences on this forum, and then will be a permanent point of reference that - today - 1600+ persons with or concerned about ME have agreed on, democratically, by patient patients' peer reviews of what's available, and by free rational discussion.
After all, there are medical doctors, nurses, statisticians, psychologists, mathematicians, lawyers on this forum, and many with LOTS of experiences, insights and a gift for telling it like is: We can do it if we try!
And once it is there, the US folks with ME on the forums can say to the CAA: It's there. That's what WE think, in majority and after due consideration: DO something with it, with your funding and paid staff!!
Best wishes Teej, and thanks for your kind words,
P.S. Also, I think it would do no harm whatsoever if we try to juice it all up, once it starts getting in place, with doses of CoFIBs: Having fun in between really makes serious stuff a LOT more palatable, and the talent for that is also present om the forums.