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Hi, thanks for posting. Is this connected to the UK's ME Association in any way?
Might I suggest hitting the UK first since the Weasel and the rest of the sociopaths have a lock down on all critical info going into the UK on ME/CFS and the Soviet-style psychological "brainwashing" attempts they call CBT/GET. I think many of us believe that the Weasel et al are really just trying to kill off the ME/CFS sick via GET - the ultimate death march for very sick people.
What does it matter what forum have started this new association....
I think it sounds great and an International CFS association with these aims is needed.
I agree with some things you say, Suzy, but i think we should give them some time to fix these things.
There was some discussion on "ME/CFS Forums" about founding an international organisation some months ago, i think, and when i got the anouncement, i thought IMEA is the product of that discussion. But i'm not sure, because i don't read that forum much.
This afternoon the names of the directors were mentioned on the website and they still are at this moment, plus there was some biography and statements.
...I think these issues have become pressing because this group has thrown themselves directly into the lions den on an very important topic: ICD modifications. I would like to know who and what this group is on about. Are they going to do more harm than good? Do I want to support them or distance myself from them? Unfortunately, their decision to take such action now, does not, in my mind, afford them the luxury of time to attend to these matters/effectively communicating to the community they purport to represent.
House keeping matters and addressing these fundamental public issues for a new org are important I think, to establishing credibility and support in the general ME community. Right now, I think youhave to be able to win the support first and fore mostly of your community. Political heavy weights like the CDC, have ben around a long time and will politely dismiss them out right, if they do not have strong peer support. The CDC knows who the key groups and players are.
I think a new org needs first and foremost to doing a good sell job to their potential supporters, before it runs off to attend to business. It needs to be able to tell them clearly who it is, what it stands for, the issues it will address and where it stand on them and why the community should get behind it and support it. To do anything less is kind of arrogant-there is almost an assumption that the community will simply endorse them and any activity they deem appropriate. Once upon a time that might have been acceptable, but right now, there are lots of people disillusioned with certain gropus and organizations causing people to look more closely at these orgs and what other are doing...
....Unfortunately, given that this new group is intent on meeting with the CDC now, allegedly representing you and I, I think we have a right to answers now. If they are professional and a competent organization, they will have had already attended to these house keeping issues. If they have not, then it is in the interests of those they claim to represent, to know this also.
No, Eric, IMEA was sprung on the members of ME-CFS Forums, despite the discussions which had been taking place over the past few weeks. This is an independent venture.
It is looking likely that IMEA "Director" "Gethin Price" is "Gerwyn Morris".
I note from Co-Cure, today, further concerns about this "organisation":
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From: "Pat Sonnett"
To: <CO-CURE@LISTSERV.NODAK.EDU>
Sent: Tuesday, March 22, 2011 2:55 PM
Subject: [CO-CURE] ACT: Write to the IMEA
The International ME Association (IMEA) is in the process of scheduling
a meeting with Dr. Elizabeth Unger at the CDC and is soliciting patient
input regarding questions to be answered during the meeting. One of the
questions posted on the site at
www.imeassoc.com/IMEA_to_meet_with_CDC.html includes the sentence
"Patients do not want the CAA biobank samples used in studies."
Regardless of how one feels about the CAA, its BioBank is composed of
ME/CFS patient samples from Dr. Lucinda Bateman, Dr. Stephen Gluckman,
Dr. Nancy Klimas and Dr. Charles Lapp, highly respected pioneers in the
ME/CFS field. These patient samples could provide valuable information
for research and to specifically ask that they not be used would be a
disservice to the ME/CFS community. We all want to get well and
excluding these samples would only serve to impede our progress.
Please write to the IMEA at info@imeassoc.com and ask that the statement
"Patients do not want the CAA biobank samples used in studies." be
removed from the questions/statements to Dr. Unger and the CDC.
Pat Sonnett
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Suzy