#MEAction: Dr. Koroshetz Declines to Take Urgent Action for ME. Read His Response and Take Action!

Here's a sample message my sister sent to Zack Berger , who has open dms and lots of medtwitter followers. I suggest anyone who has a Twitter account and is willing shoot him a dm or tag him in a post. Screenshot_20191124-160000.png
 
So it seems that Walter koroshetz (the target of the recent MEAction campaign and the person in charge of ME/CFS funding ) has been bombarded with tweets but will not respond , and probably doesn't care.

Outside of twitter, if you search Walter koroshetz you will not come up with anything about his failures in helping fund research on ME/CFS.
 
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debored13 said:
This may be controversial but i also think the broader disability community has not stepped up as advocates for our community, and its time to demand allyship from them. Many of their concerns are structured within the social model of disability and many of them have illnesses that have some FDA approved treatment , so their advocacy is more along the lines of accessibility, whereas for us, we need a CURE.
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There would be some value in getting the MS folks to understand that what's been done to us is aiming straight at them.

I still commonly see MS people testifying to almost as bad an experience getting diagnosed. They already understand the harm that it does. But with the like of Chalder and other MUS evangelists going for MS, it's possible they could fall for some of the spin and have to suffer some sabotage of their own. As we've seen recently with a failed Chalder-overseen study of happy-thoughts-for-MS that was rejected so badly it didn't go forward, it's going to be harder than with us.

It's already a significant problem for MS to be misdiagnosed with ME (or CFS, MUS, hysteria, whatever) and they have faced a very similar history to ours. There would definitely some heads spinning looking at SMILE and the promotion of LP within the MUS cult and how MS is among the diseases LP lists as curable by their nonsense, especially given how Chalder lists MS and a CBT BPS approach as one of her current list of priorities.

Just no idea how to accomplish that. But their problems aren't all in the past so MS organizations have every reason to stamp this down and expose this garbage exploitation.
 
debored13 said:
So it seems that Walter koroshetz (the target of the recent MEAction campaign and the person in charge of ME/CFS funding ) has been bombarded with tweets but will not respond , and probably doesn't care.

Outside of twitter, if you search Walter koroshetz you will not come up with anything about his failures in helping fund research on ME/CFS.
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I don't think not caring is the issue. There are a lot of politics behind this and the NIH has a lot of liability for their past decisions. No doubt there is a lot of internal opposition to even what they are doing right now. We're a deeply unpopular bunch and those decisions are never unilateral, they need other people to agree and work towards the same goals. Right now it's 90% political because the facts are rejected so it operates more on the principles of politics, of empire building and turf wars, than anything having to do with science.

Still worth voicing those demands, it builds up a public record that will serve us well when we pass the tipping point and those responsible inevitably try to argue they didn't know it was this bad. Those things are rarely malicious. It's mostly aggressive ignorance and lots and lots of sunk costs and self-preservation for those who argued against reality and can't face acknowledging that. Add a heavy dose of Dunning-Kruger to that and the outcomes are generally disastrous until reality finally asserts itself.
 
I can't see the twitter link in the previous post. I'm not sure whether it was a mistake (not posted?) or whether it's a problem on my end.

At any rate, I'm posting this twitter link on Warren's disability policy just in case others are having a similar problem:


Code: 
https://twitter.com/ewarren/status/1212765606648406017
 
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