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http://www.nytimes.com/1997/11/12/us/new-challenge-to-idea-that-aids-is-special.html

by my count there are no hatched chickens at this time. i don't trust anything that we, or people we trust, are not in charge of. and there will come a time when we don't need to read the tea leaves. we won't be out of the loop. edited. [it needed clarification. and it needed randomly...

if you mentioned angioedema, i missed it. were these tests a stab in the dark for your ear reddening? also i wonder why they test number and not just function.

i really liked reading your story. i think it is useful for those of us who can share this kind of thing. many people with m.e. are a bit uncertain. in my case, i strongly fit m.e. [meicc + stuff pwme say] but also have too many signs and symptoms [an insane number] to have them be accounted...

demand the data before publication, as a condition of publication. i do not think any other policy will work at this time.

we need decisive major wins. ones that fit our limitations. ones that media and academia cannot ignore. retraction, imprisonment for serious crimes, etc.

this. first, it's not ok to be the nerd who says to the jock "no no that guy over there is the nerd." [an arbitrary social construct of hierarchy. nerds on /this/ forum are cool.] second, the jock will bully both you and the guy you pointed to. "no, i am not a witch" reinforces witchcraft...

@TiredSam well said. also, i greatly appreciate that you did not inflate severity labels. you also defined your term, and you made it clear that what we call mild is so severe that it is life-changing, while still [eye-opening to the general population] being mild from the perspective of the...

i want a survey sent to /all/ doctors and /all/ politicians in congress and parliament and /everybody/ at nih and fda and mrc and nhs that asks things like: 1] people can be bedridden for a] they can't b] days c] weeks d] months e] years f] until they die 2] people have died a] true b] false...

nih emailed it today. if it is a duplicate, then we should delete the thread. eta: have we been keeping versions of all major websites? so it can be compared using diff or whatever windows has to offer? it would be good to regularly download all major web pages and keep them under version...

"Version 1.0 of the NINDS/CDC Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Common Data Elements is now available: https://www.commondataelements.ninds.nih.gov/MECFS.aspx#tab=Data_Standards Regards, The Trans-NIH ME/CFS Working Group " did not read

“In the most serious cases, people can be bedbound for weeks at a time.” that is up there with "young children can't get it" and "most people recover". it says many things, succinctly: - /you/ don't need to be concerned. the worst it will do to /you/ is like watching your favorite soap...

i was REALLY REALLY pleased when an ms organization in the uk fought for us and said we needed access to their hyperbaric o2 machines. i hope i remember this correctly. this made me feel really really good. ms is an accepted disease. they fought for us. this means smoething!

interesting to see allergic conjunctivitis there. did they report incidence? although mine was severe, it was one of my earliest symptoms as a young child. it is not usually mentioned in the community, so i presumed that it was not common. wonder if it could be an mcas or mold link, or an...

can parliament expedite the release of anonymized data from pace? including all of its papers. pardon if already asked.

this fund is awe-inspiring. good choices.

think it would be a hit if you or another person who knows about lyme science and politics decided to write: "a primer for pwme about lyme and tbd" not that i'm asking you or anybody to perform the work, but learning a bit about the epidemiology [with chronology/geography/species], pathogens...

would complement be a possible link in creating autoantibodies? e.g. in the transfer of repetitive behavior by igg transfusion in mice [possibly as an ocd or tourette's model -- did not read paper]? i suspect the hornig and lipkin in the author list are mady and ian respectively...

what type of specific justification? btw what do you think of pans/pandas? or fluoroquinolone autoreactivity?

thank you for the great letter. but could there be a catch? i propose adding one sentence. i hope the following is wrong. everybody "knows" what kind of disease it is: trivial or nonexistent. maybe a big problem for doctors. or worse. therefore, if you don't mention the need for...