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there is another side to this heartwarming story. i agree people have the right to not be seen as broken and to not be changed. but some extremely disabled people /do/ have broken bodies. and /do/ want to be changed. and they have that right, /too/. yes, social change is needed. but curing...

just a mere brainstorm, but i wonder if we could develop a loose network of people in various countries where such questions can be asked. on rare occasions. maybe via meaction or so. for example, a japanese advocate for m.e. might know somebody who might be able to translate. on rare...

i couldn't fail not to disagree with you less! :] seriously, nobody in this thread is blaming immunologists for not finding something that might not be there. we're saying some stuff that is both nuanced and not in the literature, however, and so might be of interest. your experience is...

true. > So work from University College London would be published by University College London, with peer review. still concerns regarding incentives, transparency, pre-registration, providing data before publication in open and documented formats and making it accessible, etc. we watched...

this is really disturbing. a significant percentage of pwme have autoimmune suspicion or several autoimmune diseases. many of those have no doctor [because bedridden or housebound] or doctors who don't know enough about autoimmunity. almost everybody does not have a doctor who knows about...

if "all blood tests give a negative result" is an accurate translation, then what cohort are they using???!!!

stuff like reserve a portion for exploring and the rest for formal experiments? require pre-registered studies? require reporting of negative resuls? riffing on @Joel.

am i the only crackpot who wishes that those who get conspicuously outraged over those two problems that have snappy epithets [and get press and academic interest] -- namely "predatory journals" and "fake news" -- would lend a !@#!$ hand over such things as pace and the lancet, bristol and qmul...

thanks, mermaid. the website errors. where do i post on fb as a non fb person? can't use my twitter account as it is too stressful. so striking out. but it's not critical.

i think she is a major health columnist/author, which is why it is disturbing. i think we should raise our expectations of journalists and make sure they rise to them. this is not a topic where is is ok to skim the cdc site and a few web pieces and then offer bland exculpatory vagueness. the...

weeks?

is there a text summary of each section of the movie, or a transcript? i won't be able to watch the movie. i'd like also to know of a clip of some of jen's and other subjects' symptoms [no bigots or bad guys shown]. finally, is there a description of /all/ of the symptoms of some of them?

whatever level of science funding we have sought and will seek, this argues for a positive multiplier on top of it.

i'll give you 2, @Sasha. [1] we need solid results.* uncertainties such as few and small-n trials are categorically intolerable. history [and perhaps congress] will judge nih. people are saying f&m did a good job. a good negative result can be better than several sorta positive ambiguous...

perhaps her statement would better be expressed like this: "I always think that if my femur were sticking out, and the nurse and doctor refused to look at it because of the actions of people like EC and their backers –-- sorry, being treated like that is an m.e. thing –-- and I knew I only had...

i stil don't get it if mcas or allergies don't fall into the second category.

i would like to know of any believable research in the area by actually-scientifically-oriented researchers. is there any? does prolonged stress during childhood -- or adulthood -- increase the probability of health issues, and if so, which ones specifically? feel free to define "stress"...

great q. answers might be useful in the library or on mepedia. certainly cbc/cmp. maybe viruses? in particular, i'd really like to know what constitutes a good and thorough immune and autoimmune workup. this drives me crazy. i have been tested for [and positive for] anti-ds-dna, intrinsic...

this one uses zinc fingers, which we have talked about. it seemed slightly speculative at the time. that it is being tested is encouraging. the title is slightly misleading. hope this guy gets healed.

as science in m.e. becomes popular, there will need to be places where scientists, including graduate students, can informally talk about m.e. biomedicine and bounce ideas off us. maybe this forum will be inviting to those who want to learn deeply. i doubt the sum total of our relevant...