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not able to follow this sufficiently for health reasons. also this post might not make sense. === if rd is saying a first goal is to show that the disease exists, then can he publish the serum swap experiment? === what /would/ convince people who think a disease that has killed many people...

i have been thinking about this for quite some time from a completely different angle. instead of a naming and shaming website, i'll paste some stuff about an alternative website. === from time to time, pwme opine on our worst habit. to me, it is none of those things. it's "aiming too low"...

what follows is forum splatter. i am not up to a real post. === good point. we can make positive statements about what is needed. we don't have to just fight bad things. instead of playing whack-a-mole, by showing what is needed we even SHOW that the entire frame of reference is wrong. we...

off topic post, with added tmi to boot. i have a tooth [i think also bone] abscess [which means extraction of two teeth. the problem is that i ahve hyperalgesia. i also have severe opioid intolerance for unknown reasons. i also have the unusual case of no anti-nausea that i have tried...

@JenB n.b. we have a thread on a similar topic. https://www.s4me.info/threads/hospitalized-patient-w-severe-me-looking-for-treatment-guidelines.1639/

@Sean > Hannah Arendt wrote that “people are more likely driven to action by the unveiling of hypocrisy than the prevailing conditions.” --- bill moyer, movement action plan, stage 2 i think exposing hypocrisy could be useful. for example: qmul is supposed to do science, not attack it. so...

@Inara > this is an interesting document, and I think very useful for our purposes. i think we need to think in movement terms. at the current /rate/ of progress, most of us will die before there is enough meaningful change to make a large qualitative difference in the quality of our lives...

for reference, here is my narrowly-scoped contribution: http://thekafkapandemic.blogspot.com/2013/01/an-objective-severity-scale-for.html === i think the exponential scale is useful. think about whitney dafoe being a photographer, then becoming housebound, then bedridden. what labels make...

> And while the PACE trial claimed that GET is safe, AHRQ found that the therapy was associated with more adverse events. i knew that ahrq downgraded the evidence, but i did not know about the adverse events. can this be used?

hi all, if it is possible, i'd like more engagement in this thread. tldr: 1] for each of stages 2 and 3, read the first paragraph, bullet points, and conclusion paragraph 2] skip everything else i.e. read 4 paragraphs + bullet points. the link again...

robbers cove, milgram, etc. the kitty genovese case has also been challenged, in case it didn't mention that.

hi @Graham, 1> I don't think we are anywhere near critical mass... 2> But we are at the stage where we ... are ready to push for critical mass. not sure what you mean.

i should have very clearly stated that it was a while back. i had not realized or remembered that it was long. remiss of me not to mention. do not try to read from start to finish. 1] burn the values and sensibilities paragraph i quoted in the first post into your memory, then click on link...

hi all, were you able to skim or read the framework? do you think it applies? what stage do you think we are mostly at? do you think we need to prepare to take advantage of events so we can take off? do you think we can skip doing more stage 2? i think we have been in stage 1 until...

is there anything said in the recent video that was not said in the symposium?

@Forbin if it's molecular mimicry, @Jonathan Edwards? i wonder if t cell clonal expansion could be related to angioedema, or not. i have had more than 50 attacks. google suggests possible t-cell issues. i finally discovered a trigger: soap. all soap. with a few types of soap there was a...

/Movement Action Plan/, by Bill Moyer. http://www.indybay.org/uploads/movement_action_plan.pdf excerpt: === STAGE TWO: PROVE THE FAILURE OF INSTITUTIONS The intensity of public feeling, opinion, and upset required for social movements to occur can happen only when the public realizes that...

i can't speak to growth hormone, but i can say that my health is strongly mediated by quality of sleep the night before. this, in turn, is mediated by monitor off time, use of amber goggles, etc. [light timing, type, and intensity although not fully figured out], 6 hours of lying in the dark on...

i wonder if this could be useful for those who live in the usa. you just fill it out and click submit. https://www.ada.gov/complaint/form.php?language=en "Americans with Disabilities Act Discrimination Complaint Form" === imagine thousands of pwme filing complaints against hospitals who...

many people think that is all the social model is saying. that is /not/ all it is saying! it deliberately contrasts with the disease model. impairment is downplayed. disease [i.e. "limited and sick and needing treatment" as opposed to only "limited"] is extremely downplayed and usually...