Are you outraged by the last situation in ME - then act now.

[Tuha]

Are you outraged and disgusted by the last situation in ME? I just made this appel on many ME facebook pages. If you like it just join it, share it and distribute it widely. We need something positive, we need positive changes we need to act immediately. My post:

Outraged and disgusted by ridiculous BBC articles, never-ending psychiatrists' denials of ME/CFS, Crawley´s pretending to help the ME community, ME-denialist Shorter´s NIH invitation? Then join other patients and donate to REAL ME/CFS research.

Only biomedical ME research can move us through this difficult period and fight the ME/CFS denialists. #realMEresearch

If you don't know where to donate, here are just some options of really great ME/ CFS research groups:
Lipkin & Hornig's microbiome/immunity/"big data" ME/CFS MONSTER STUDY:
http://microbediscovery.org/

Open Medicine Foundation's End ME/CFS Project:
http://www.openmedicinefoundation.org/donate-to-the-end-mecfs-project/

Invest in ME research's Center of Excellence:
http://www.cofeforme.eu/

It's time to do something positive!

 

[ash0787]

Ideally what you would do here is try to spread that outrage to the general public, maybe people that have never heard of me/cfs before but when they read about it they get angry, by distributing the story widely enough and framing it in the right way, now would probably be a good time to do that because you have the evidence and the backing of researchers plus a bunch of articles in the press recently highlighting their corruption

 

[Tuha]

Ideally what you would do here is try to spread that outrage to the general public, maybe people that have never heard of me/cfs before but when they read about it they get angry, by distributing the story widely enough and framing it in the right way, now would probably be a good time to do that because you have the evidence and the backing of researchers plus a bunch of articles in the press recently highlighting their corruption

yeah, it´s up to patients now to spread the worl not only in ME community but also outside. It´s really easy - all my friends and family know about and some of them support ME research already

 

[Snowdrop]

Given the state of the world it would be good to have a broad, loose alliance with other disadvantaged groups eg poverty, disabled, minority, prison advocacy groups where there can be mutual support on areas of common concern

 

[taniaaust1]

We should be really really up in arms that they are going to use KIDS in ME/cfs trials that have failed in adults. If anything gets general public up in arms is child abuse and things done unfairly to children. I do not want children to be used as guinea pigs by these people who have and still do treat us terribly, lie etc for therapy which some of us have found to be harmful.