Problems with 'our' M.E. (and CFIDS, ME/CFS) advocacy groups

thanks for posting, your right it is a nightmare

Brilliant video Jodi, thank you for making this important point so forcefully.

The 25% M.E. group that represents those severely affected in the UK must be exempt from your criticism of the larger better funded charities. The 25% group has always worked in it's member's best interests. It is vocal in it's disgust with the incomprehensibly powerful wessleyites and their unscientific 'somatisation' (hysteria) theory of M.E.that is saving the benefits agency and health insurance companies millions

Well done Jodi, if only you were healthy. You're an intelligent worthy human trapped in this horrendous politial illness. Tragic, very tragic. Peace. x

you are a powerful force - no question! more power to you : )

The Pictures help lift my spirits. Thank you

Excellent Jodi!

GBCOne - can I ask how this fits with what you say in your WHO's Right Video that seems to say the complete opposite...

Personally I find it difficult to know what to think half the time - there is so much conflicting information around...

You'll have to explain, dgd.

PWMEs may have naivety but in my decade's experience of dealing with them, I find them very unwilling to rock the boat, generally speaking. PWMEs have to raise their game. What I like about Jodi's videos are that they are cleverer than most, especially visually, and those videos get to the point. There has to be less snobbery, more tenacity, more imagination and a few other things. To a degree, PWMEs get the advocacy groups they deserve. They themselves have to raise the bar. Nobody else will.

I totally agree with your message, and hope LOTS of people see this video. (Certainly, lots of people NEED to see this video, LOL!) What a great idea to use animation! Five stars from me, too.

Thank you for speaking out. You are very articulate and clear. Its time to end all this suffering and start treating people with chronic illness and pain like people.