New post on Occupy M.E. - The Truth Is Not Always Nice

Full blog post - http://occupyme.net/2017/11/01/the-truth-is-not-always-nice/

Apparently there was a joke(?) in a recent presentation where one slide for doctors doing ME research had the title, "Team Tired."

I love the last line " The truth is: You can joke about it after you have actually produced results that help us."

 

Or another line might also have been: "If you are unlucky enough to fall prey to ME ... then see if you can still joke about it!".

 

Am I going to have to change my Name to TiredOfThisShitSam?

 

i think if it were hiv/aids, wallitt and ilk would be fired and treated correctly as a scandal by newspapers, not assigned to the very disease denied. we need the power hiv/aids advocates have.

[ETA: but as for the topic:]

i don't want the nih to hire marketing people instead of acting ethically. the real point [as jennie of course knows and correctly mentions] is their policy.

===

for example, just today we were "graced" by yet another paper studying what terms to use to describe "mus" [a political disease category that does not mean in practice what its label sounds like]. https://www.s4me.info/index.php?thr...symptoms-the-views-of-cfs-patients.634/unread . here is a similar one: http://jnnp.bmj.com/content/early/2012/01/15/jnnp-2011-300992.full .

not to put too fine a point on it, but here is what we do not want nih to do:

"Such usage occurred, moreover.... not only in communications issued to the Jewish public when
the intention of those issuing the communications was to
deceive the Jews in order to minimize the likelihood of
resistance, but also in addresses to the outside world and,
perhaps more significantly, in internal communications as
well, among officials who unquestionably knew (who were
themselves sometimes responsible for) the linguistic
substitutions stipulated by the language rules." -- Act and
Idea in the Nazi Genocide, by Berel Lang

in the context of the slide, replacing "team tired" with "team really bad disease [wink wink]" is not an improvement. the cdc does that. it's their special little trick, similar to but different from uk rhetoric.
cmrc would definitely catch the "wink wink". they probably wink wink all day.

===

what we need is radical change. "push-crash cycle" apps in place of disease process science? hay fever funding? nih needs the metaphorical fear of god. francis collins has not seen a triple waterfall yet. i believe his hands are not tied.

change in wording follows change in policy. the political context has to be emphasized strongly in all cases, or the message is [gratefully by the abuser] lost.

 

https://twitter.com/user/status/926233873280831489

 

I hope not. I spend enough time typing arewenearlythereyet.

We need the energy hiv/aids advocates have.