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

[KonaSitkaRose]

Aloha, Jodi,

It is nice to hear your voice after reading so much of your helpful information on your website. Our situation is so tragic, in deed. I feeling like I am dying every day, but keep waking up for more torture. I have lost faith in the medical system as well as so-called support groups who don't have a clue, but ask for money. And I am/was a nurse, now about 95% bedridden. When I do try and get up, it's so awful I can't explain it. Here's to better days for all of us <3

[BondGirl070]

This is so true Jodi. Here in Canada there is just as much ignorance as the rest of the world. No doctors I had seen at first had never heard of M.E. So clearly there is little to no education or the wrong education about M.E. or CFS. I found a good doctor, knows about M.E., finally through the College of Doctors and Physicians, but it's under the terminology of CFS. Unless we all begin to speak up nothing there will be no movement. Thanks for ALL you've done this far!!!

[erin517]

thanks for posting, your right it is a nightmare

[Bluebottle83]

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

[luminescentfeeling]

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

[mollyfairy]

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

[paradisenowlost]

The Pictures help lift my spirits. Thank you

[deadgirldreaming]

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...

[GBCOne]

You'll have to explain, dgd.

[salchar]

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.

[lednugenna]

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.

[neelubird]

My symptoms fit Byron Hyde's definition of CFS but not ME. I think there is a need for fatigue support groups for ppl like me but you're right too in that they shouldnt hijack the name ME nor treat patients with either condition as if they're the same- that helps noone.Unfortunately there is a lot of naivety out there in the ME community- so many ppl who think they're helped by those with hidden agendas who offer a newsletter and kind words.

[GBCOne]

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.

[salchar]

Terrific! You said it all, and the use of animation was great!

[GBCOne]

I'm smiling watching this. Five stars.