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Bert

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1 reviews

Review for Pandora Org, Traverse City, MI, USA

Rating: 4 stars  

I have severe ME-CFS & have had the condition for 50 odd years now, it waxes and wanes. For what ever reason the government agencies have, on the whole, been dismissive of this illness since 1970. PANDORA seems willing to stand up to these agencies in a way that our other national group has not. In some instances they can be a little heavy handed but considering how lax the other national org has been, that might be a good thing. They will have to recognize that people must be allowed to choose what their own paths will be; but this problem could be due to the youth of the organization.

I've personally experienced the results of this organization in...

A little early to expect results, but they have made great efforts & seem poised to do more. They are deeply committed to the cause & did assist in getting a boy reunited with his family after he had wrongly been removed by DSS.

If I had to make changes to this organization, I would...

Have them see that reasonable people can disagree, and allow people to choose whether or not they want to participate in a given project. No one is right 100% of the time.

Role:  Professional with expertise in this field & I've watched them in action at the CFSAC, they had good posters & are know a good deal about the illness & the politics around it.