• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Scientists and patient organisations call for retraction of PACE recovery paper - open letter

Molly98

Molly98

Senior Member
Messages
576
Yogi said:
If you or anyone could look into this that would be very helpful. I am unable to do so at this point in time. It would be good to put a strong case together for the Charity Commission to investigate Inaction for ME and hopefully shut it down.

I really feel sorry for the people who fundraise for it by going on runs and doing coffee mornings etc. They need to know about IFME and the damage they are doing to the ME community.

IFME are a major elephant in the room that needs to be addressed.
Click to expand...

I am not up to it on my own, as my reading and writing is a bit hit and miss due to eye pain and pooped myself out by overdoing it on here a few days ago:ill: so having to be a bit careful. But a few of us working together may be a possibility? I will have a think on it.

It would be good to get something going before the next AFME board meeting.

They need to be held accountable to the community they were set up to serve and support. Burying their heads in the sand and hoping this difficult issue ( for them, no one else in the ME community) will go away is not acceptable.

Neither is any feeble excuse and spin after the board meeting as to why they could not sign it; like their computers broke, or they all had colds, or their dog accidently ate their copy..

It's beyond patronising, do they think we don't know they are just making excuses and buying time by saying they can not sign without a board meeting.

What they really mean is, Sonia, Crawley, White, Holgate and Mary Jane Willows all need to get round the kitchen table for coffee and cookies for an unofficial crisis meeting and figure out a plan to wheedle their way out of this one while keeping their reputations in place in the hope that it will all blow over and they can get on with their plan for MEGA to keep them in Jobs for the next few years.

Perhaps we should start a Guess AFME's excuse for not signing come their board meeting, to raise funds for IiME.

£5 a guess, the winner wins a free copy of the next IiME conference video ( or another prize) and the money raised goes to IiME
 
You must log in or register to reply here.