International ME Association Update

[barbc56]

As far as transparency from patient advocacy organizations goes, the recent hiding of the activity on changing the coding is quite enlightening. That was certainly not handled with transparency. The patients were not even consulted for months. The suggestions for changing the coding were already decided upon by then.

I agree Ana should reveal her relationship with IMEA, if she has one.

@ Barb, do you know that Gerthin is really Gerwyn or are you just guessing on that?

Nope, 100% solid proof!!!!!!

 

[Wayne]

IMEA Mailing List ?

The infighting over there is such an awful situation and it makes one wonder how long the forum will last. I think the people who go over just to see what all the commotion is about aren't even returning. I don't. It's just too depressing. ......... Obviously I haven't been to the IMEA site for a while. We need to spread the word about this incredibly harmful organization.

Hi Barbc, thanks again for your posts here, and telling it like it is. I completely agree with your perspectives.

The reason I'm posting here this morning is because I received a private e-mail from the IMEA. And given how I feel about them, find it quite disconcerting. It was sent by: media@imeassoc.com. It was sent to: info@imeassoc.com. I don't know how I got on this mailing list, but it was certainly unsolicited.

My question: Did anybody else has receive an e-mail such as this, and if so, do you have any idea how you got on their mailing list?

Thanks, Wayne

 

[Dreambirdie]

When supporting new "organizations" that are claiming a mandate to represent international patients and undertake "international" advocacy, it's not a bad idea to establish the following:

Who are the players?
What are their backgrounds and their previous history in advocacy?

How professionally do they conduct themselves in private and in public arenas?

How is the organization constituted?
How does the organization consult with its constituency of interest?

How stable is the organization?

What are the organization's positions and policies and how stable are their positions?

These are very reasonable and necessary questions to ask of any organization.
Transparency and integrity are essential to the equation.

From what I've seen so far, this organization needs to take a good hard, critical look at how it conducts itself as an organization and importantly, how the individuals who make up the organization conduct themselves on public forums.

Suzy Chapman

I absolutely agree with you, Suzy.

Thank you for your well articulated post. The truth needs to be told.

 

[Dreambirdie]

The reason I'm posting here this morning is because I received a private e-mail from the IMEA. And given how I feel about them, find it quite disconcerting. It was sent by: media@imeassoc.com. It was sent to: info@imeassoc.com. I don't know how I got on this mailing list, but it was certainly unsolicited.

That is strange, Wayne. Maybe you should email them and ask to be removed from their list.

Fortunately, I am not on it.

 

[eric_s]

Is it the email adress you signed up at ME/CFS Forums with?