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thanks @Dolphin i read that as icc. why did my brain do that? the first version of the iacfs/me one said infections were not an issue and it recommended exercise for severe. i was told it has gotten better but have not looked at it, given that the first one failed to understand the disease.

omf sent this out: vvv NEW GUIDELINES FOR DIAGNOSING AND TREATING ME/CFS A resource for clinicians and patients. The U.S. ME/CFS Clinician Coalition, a group of U.S. ME/CFS experts, has authored a handout on the basics of diagnosis and management of ME/CFS. This handout is being made...

these notes are of global import, not just the uk. all off the top of my fogged head. this is a horribly sloppy post. i' prefer it not be quoted. first we need legal action and all democratic channels of all types including - criminal trials - complaints to official bodies - once again...

> Public comments received in response to a Request for Information from the NANDS Council Working Group for ME/CFS Research are now available: https://www.ninds.nih.gov/node/18206

what follows is a primal scream expressing despair at the /state/ of our community and our charities [not the writer or any forum members or any members of the m.e. community]. and four things that i think we can do to jump out of that state to make progress. a personal opinion that exorcism...

appears to make it seem that things that exist do not exist. approximately like this: 1] not stated [but true]: x exists. 2] not stated [but true]: x that includes a specific characteristic c exists. 3] not stated [but true]: x with specific characteristic c is a problem supposed to be...

my opinion is possibly opposite to your opinion as expressed here. assuming i understand yours. i agree that in principle activity intolerance as opposed to popular understandings of the disease could be a limited win in understanding. we keep trying to make it a win. but i am going to (try...

yes. a major question in the op is whether we are focusing too much on activity, perhaps merely because that, out of all of the intolerances, is the most conspicuous and available and commonly described. as an example hypothesis: subjects who enter studies are almost always able to travel to...

great idea. i wonder if it can be expanded to stimulation overload and orthostatis intolerance and more? karina and many more were involuntarily subjected to increasing levels of noise, increasing levels of being vertical, and so on. this is human rights violations. so if possible it might...

i am not sure at all, but are we talking about a mainstream newspaper that published the article handed to a reporter by the smc, where perpetrators themselves assembled to craft it, seemingly to stop legitimate requests for data, and also... ... in which an advocate none of us (to my...

idk if this is going to be useful: what definition of comorbidity are we using? is everybody on the same page? i find that it is often useful to abandon a word and say what you mean in the more cumbersome but less ambiguous base concepts. or else say "by the definition in (link here)". in...

for clarity, i want to confirm whether you mean 1 or 2 here. 1) initial *infection* -- i.e. the individual cases' disease progression from the profile found in the description of an epidemic (which i said does not feel like meicc) into meicc? vs. 2) early historical *epidemics* do not look...

this might be significant for jama publishing it. isn't jama the journal that refused to publish on the disease? or has the jama (japanese for obstruction) been already lifted? [correction: it was nejm i was thinking of. thanks to @Medfeb.] === the 1934 outbreak, as described in a 1938...

i just want to add that this report could in principle launch the movement we need to launch. many of the attacks on our population only have significant force when these facts are kept hidden. i published the following in 2011 (probably written earlier) and i think it relevantly summarizes...

this is a potent weapon. it could punch through a lot of denial and propagandized ignorance. even the charts alone TELL A STORY! === if the untranslated parts are anything like the translated parts, i think many pwme will want to send this to their senators, mps, francis collins, the...

http://thekafkapandemic.blogspot.com/2012/09/the-word-invisible-is-problematic-in.html

Whitney has two messages for the m.e. community, as reported by Jen the above shows as a blank square when js is turned off. it is xxxhttps://medium.com/@jenbrea/meeting-whitney-cf179fdad0a9 @JenB

thank you to the activists. i am in awe. what is the frequency of senate-only resolutions of this type? can we assume this is not the type of thing that gets signed into law even if the house does the same? can we start to expect support from both major parties, without any one party in...

i should definitely not be posting now, but: what if we use "level 1", "level 2", and so on, instead of either descriptive labels or stages? === i don't think it is right to allow, for example, what @Amy101 is talking about to continue. even if we tweak the descriptive labels [profound is...

1. i published one idea here: http://thekafkapandemic.blogspot.com/2013/01/an-objective-severity-scale-for.html this is based on number of times, but could also be number of days. i call it more or less objective because you can in principle measure it with a device, but it's not really meant...