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 insisting that non-m.e.-specific charities [esp human rights] get on board
- hate speech etc. laws
- getting articles into newspapers. never stop.
- getting articles into the medical non-journal literature never stop
- getting papers and letters into journals never stop
- invoking hate speech laws
- many many more never stop
many of our biggest successes have been actions few thought would succeed.
bill moyer's movement action plan says we are in stage 2. channels are what we are supposed to do at this stage.
i am not saying that is the only model we ened to follow but it is clear it exists and i agree that we ened to do exactly that at this stage.
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fix some of our charities.
some of our charities are dead wrong. the recent mea thing will piss me off for a good long time -- not the writer but the fact that the charity considered this to be acceptable at all.
yes mea has done some good and i am not going to stop being grateful for whatever they do that is good...
... but the recent mea article is rightly symbolic of the WHOLE PROBLEM with our charities. it really means somethign. it is not just a fluke.
the order of magnitude is wrong. by many orders of magnitude.
the attitude is wrong. the modal sensibility is wrong. a different universe from what the wide range of severity and fucntionality of those who have the diease are dealing with. the whole sense of the disease is wrong!
it's a problem of undersstanding what we are dealing with, and what is neeceary to deal with it.
they do not understand severity. they do not udnerstand urgency. they do not understand misopathy. they raelly do not.
i wonder if most have ever visited severe sufferers at for examlpe whitney's level or worse or better or taken stock of what those levels are dealing with.
i suspect they never have.
there are 2 models for an m.e. charity. one is: emulate a standard accepted disease charity. you come in, make coffee, issue press releases, collaborate, etc. if a hate speech article comes out, you issue a pro-forma statement.
polls, articles, ask for donations. an occasional letter.
you could calibrate your watch by this model. you could put a computer in place to do the same things. the only thing the computer cannot do is have a carafe of wine with a regulator or mp. the pro-forma statement in response to extremely recognizable propaganda is ... pro-forma.
the whole thing is scripted from a century ago. the whole thing is basically a pram breaks, the company gets sued, it issues a statement where they fill in the blanks with stock phrases, they try settling out of court. whatever.
reporters report on it pro-forma too.
everybody is sleepwalking.
it will lead to great thigns in a few centuries.
the second model is to realize that m.e. and sibling diseases are targets of misopathy. of a widespread and systematic attack on a population. the pro-forma model...
... will fail.
democracy offers more channels than are being used. and some charities are not backing up those who are trying to use them.
or using them.
to change this, some charities need a complete overhaul. they need a complete change of attitude. tweaks will fail.
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our community is submissive and reactive. "a hospital is not a hotel". "but this could play into the vexatious narrative" etc. panic.
yeah, sure. nothing wrong with wording things correctly for our superb /logos/ arguments. but zoom out please.
please save the submissiveness for private moments. nominal democracy has options. failuyre to0 get up and fight will mkae scertain that you get kicked again.
nobody will fight for us. some of our charities are paperweights so they won't either. or they are going off in fasihionable directions.
given global politics i am not efven sure we as a population will all have the nominal democratic channels in a few years. if we don't use them we will quite possibly lose them.
oh, but you cannot argue against caution and strategy, now, can you? so you can't go wrong advocating caution and strategy. nobody will arguye against you. because everybody agrees with that. so we go around cautioning one another. "maybe the perpetratorss will ...." panic. fear.
or saying "they will launch an investigatgion when all the perpetrators have died and then nothing willb e done". resignation.
or saying "we are making progress. slow and steady wins the reace." status quo bias.
there are posts from many years ago or so where members of community said things like they'd just have fun with their full and varied life until then.
they p0redicted we'd have treatments in a fwe years. from THEN. literally.
does whitney [i keep using him because he uis one of the few who everybody knows about] have a full and varied life? this is a disconnect.
i have often argued caution and strategy for the past who knows since idk 2003 or something. the xmrv mess had a bunch of grabby "me first" types.
but you /can/ argue against stasis. and we have stasis. the public respects those who fight back. i fear stasis most.
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we have improved on the whole severity levels not understanding one another thing ever sicne we realized oxford wasn't the only problem. and also as a side efffect of just realizing things like causation tendentiousness was getting us nowhere.
but we are still unknowingnly ostracizing.
many severe are *truyly* alienated by our community.
and the mildest don't think the community is for them. and many feel like they don't belong.
so we have a modal sensibility. i don't hkn most in the community realize just how alienated many severe are.
the modal sensibility is in between.
so what to do:
embrace and welcome and educate the mildest. even thouse who are not sure if they meet good definitioins. yes, uincluding smoe of the ones the community used to metaphorically spit at by calling them tatts. welkcome and educate them.
they need the phds in m.e. ology that we have. they also need to kow about disease progression.
most have no idea of what severe looks like.
some of them have the disease and will find that out in a few years. emily collingridge started out mild.
remember our poll on disease courses? i followd that poll over time. the progressive courses kept rising as respondents realized they actuyally were progressing after all. at first they thought they weren't!
nobody knows who is goign tog et sicker., everybody is one exposure from getting wore.
acknowledge the existence of severe with complex presentations. acknowledge that they are not contributing tot he discussion for health reasons much and are therefore invisible from the community.
THEREFORE their ideas their knowledge their needs their presentations are invisible. what do you think this does to the modal attitude?
it leads to things like the mea piece. seriously.
we cannot educate the public if we cannot educate one another.
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the 4 points i wrote in my primal scream [not taht the post you are reading now isn't aonther primal scream but still]:
1. fix the characterization. it is not an activity-related set of hangover symptoms including a presumed pathognomon. definition does not equal characterization.
what sympotms do severe have? find out. you are qyite possibly one exposure form having those. or in a coupl years. what is the NUMBER of symptoms? this matters. even merely meicc portrays a complex disease.
start with reality and get it across. do not start with public perception and try to fix it. do not say "it is not X". say "it is Y." like hiv/aids, ms, sle.
2. convey our history, our compelling fight, and the history of misopathy
3. big things and faithful steps that lead to big things -- follow
all democratic channels including legal route
4. fight back. do not cower. this above all.
https://www.s4me.info/posts/194070/
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i have run out of steam. had a few more points. whatever.
i might delete this post. i would prefer you not quote it. thanks.
