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New Org!: ME/CFS International Alliance

Nielk

Senior Member
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I could be completely wrong about this but when I was at the recent IAME/CFS conference in Florida there was a woman from Holland? or Norway? ( brain fog) who was talking about a new European alliance of various advocacy groups. It was composed of 8 to 10 groups from various countries and is intended to give all of us a stronger and more united voice.

She was quite feisty, in a very good way, and was talking to all of the American and Canadian people trying to entice us to form a similar united group- a single North American group.

I don't follow or understand all the political stuff that goes on so hopefully have not stirred up problems. I follow the science only since that is my area of expertise so tend to put my foot in it--probably just did that again.

I was at the IACFSME conf. as well. I remember the woman representing the European group it she affirmed that this was only open to European countries. So, no US groups can join.
 

Gamboa

Senior Member
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I would guess this would be the European ME Alliance http://euro-me.org though I could be wrong.
Yes that is it. Then, no, I have no idea what this other alliance is.

I will check with ME/FM Action Canada people. The executive should know something.

Regarding Sonia Chowdhury, I had no idea who she was and just realized that I sat with her at the banquet dinner, along with the President and another executive member of ME/FM Action Canada. No wonder she was a bit sheepish when I asked her who she was! She knew she was amongst people who are extremely angry at the UK, the PACE trial etc. In her defense, she wanted us to know that she came on as CEO after a lot of the damaging things had been done at AFME. I know I am a positive person but I can't believe she would not do more for ME/CFS patients now after attending this conference. The science is so overwhelming now and anyone at the conference should have been blown away by it. I know I was and I keep up on it all.

You will all be thrilled to know that Dave Tuller, the journalist who has written multiple reports about the now disgraced PACE trial, won an award at this banquet and his acceptance speech was outstanding. He stood up and ripped a pretend copy of the PACE trial into pieces and then proceeded to rant and advocate for the continued push to fight until the Lancet retracts it and everyone accepts that it was a piece of junk. He got a standing ovation.

My point is here, that for all you in the UK, having someone like Sonia, whether you like her or not, support the new direction of AFME or not, her presence at this conference was a good thing.

This new alliance that no one knows about? Very bad. Not sure what to make of this. I might even contact her, say I met her at the banquet and ask her directly. Worth a shot.
 
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@Gamboa wrote: "My point is here, that for all you in the UK, having someone like Sonia, whether you like her or not, support the new direction of AFME or not, her presence at this conference was a good thing."



AFME under Sonia Chowdhury does not have any 'new direction'; its just more slick.

AFME is still supporting psychosocial research, CBT/GET studies on people (and children) with generalised fatigue and passing it off as ME research, just more deviously. However those new studies, FITNET on children in particular, could well severely harm any actual ME sufferers recruited to it.

And Sonia's presence at the conference has NOT resulted in any change of policy from AFME, just indicates a more ambitious and slick manner of operating.
.

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In fact, if Sonia Chowdhury and AFME want to align with other CEO's and other ME orgs, why doesn't AFME join the long established European ME Alliance? http://euro-me.org/Denmark ME Foreningen.htm ....

Because then AFME would have to drop its 'Big Umbrella'.. 'Broad Church' ... 'tiredness with knobs on' broad definitions of ME. And then AFME would not be on the same side as the UK medical establishment, where it currently resides.

.
..
 
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I was invited by AFME to join a call with organizations from around the world sometime just before or after MEAction's launch in 2015 and I said, "Sure" sometime last year. I have never joined a call. I did not realize this was a formal organization. I do not believe I have the authority to join a formal alliance like this on behalf of #MEAction without at least board approval, if not broader community approval. I am following up with Action for ME to clarify our involvement. Thanks.
She put your name on without you having been involved with the decision to write the letter! Jen, that's disgusting! And I'm pretty sure either a crime or at least
Wow! Just looked at this new ME/CFS International Alliance website and was surprised to see a Canadian in the executive group. David Mann of FM-CFS Canada.

I recently looked up FM-CFS Canada when I was searching to see what advocacy and help groups we had in Canada and found this group but it is largely defunct now from the looks of things. The last time anything was added in the "News" section or the "Research" section was a year ago, 2015-11-03.

Obviously not a very helpful site to any ME/CFS patients and it really should have something across the top saying it is no longer active. No wonder patients here in Canada have a hard time getting help. :(

Sorry, went off topic there.[/QUOT
I would guess this would be the European ME Alliance http://euro-me.org though I could be wrong.
I could be completely wrong about this but when I was at the recent IAME/CFS conference in Florida there was a woman from Holland? or Norway? ( brain fog) who was talking about a new European alliance of various advocacy groups. It was composed of 8 to 10 groups from various countries and is intended to give all of us a stronger and more united voice.

She was quite feisty, in a very good way, and was talking to all of the American and Canadian people trying to entice us to form a similar united group- a single North American group.

I don't follow or understand all the political stuff that goes on so hopefully have not stirred up problems. I follow the science only since that is my area of expertise so tend to put my foot in it--probably just did that again.
There was a contingent of fun Norwegians. It was the new European alliance. Or should I say renewed.
civil offense. Besides being bloody rude. You should write Brady one line disavowing it irrespective of any opinion you hold on Shorter.
 

barbc56

Senior Member
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Well shot Andy. I can't believe they wrote "just because we don't know the cause..." I know the cause. I hate the way NIH and CDC et al insist no one knows the cause. We know the causeS.
We do?

Don't want to get off topic but I find your comment intriguing.

This thread has been informative as I get confused about the different organizations. I'm still confused just not as much. :rolleyes:

Maybe we need a primer which gives info on each one. Is this anywhere on PR?
 
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@Gamboa wrote: "My point is here, that for all you in the UK, having someone like Sonia, whether you like her or not, support the new direction of AFME or not, her presence at this conference was a good thing."



AFME under Sonia Chowdhury does not have any 'new direction'; its just more slick.

AFME is still supporting psychosocial research, CBT/GET studies on people (and children) with generalised fatigue and passing it off as ME research, just more deviously. However those new studies, FITNET on children in particular, could well severely harm any actual ME sufferers recruited to it.

And Sonia's presence at the conference has NOT resulted in any change of policy from AFME, just indicates a more ambitious and slick manner of operating.
.

.
In fact, if Sonia Chowdhury and AFME want to align with other CEO's and other ME orgs, why doesn't AFME join the long established European ME Alliance? http://euro-me.org/Denmark ME Foreningen.htm ....

Because then AFME would have to drop its 'Big Umbrella'.. 'Broad Church' ... 'tiredness with knobs on' broad definitions of ME. And then AFME would not be on the same side as the UK medical establishment, where it currently resides.

.
..
What is the relationship between Chowdhury and Creepy Crawley?
 
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We do?

Don't want to get off topic but I find your comment intriguing.

This thread has been informative as I get confused about the different organizations. Maybe we need a primer which gives info on each one. Is this anywhere on the forum?
Causes: mostly viral initiation though ag chemicals can do. mold toxins for some can be thing making more susceptible to the viral being bad. The paradigm wold be that something (like mold, but also other things) comes along and makes the person worse and it all kind gets stuck in a mode with brain and stem and spinal inflammation and hpa axis involvement and major mitochondrial/metabolic screw up. No ones figured out how it all goes together. Oh, I left out the acquired immuned deficiency, especially pathetic NK cytotoxicity. Amen.This is NOT meant to be either elegant or authoritative -- just a roughing out of the territory.
 
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Who invited Chowdhury to p
Yes that is it. Then, no, I have no idea what this other alliance is.

I will check with ME/FM Action Canada people. The executive should know something.

Regarding Sonia Chowdhury, I had no idea who she was and just realized that I sat with her at the banquet dinner, along with the President and another executive member of ME/FM Action Canada. No wonder she was a bit sheepish when I asked her who she was! She knew she was amongst people who are extremely angry at the UK, the PACE trial etc. In her defense, she wanted us to know that she came on as CEO after a lot of the damaging things had been done at AFME. I know I am a positive person but I can't believe she would not do more for ME/CFS patients now after attending this conference. The science is so overwhelming now and anyone at the conference should have been blown away by it. I know I was and I keep up on it all.

You will all be thrilled to know that Dave Tuller, the journalist who has written multiple reports about the now disgraced PACE trial, won an award at this banquet and his acceptance speech was outstanding. He stood up and ripped a pretend copy of the PACE trial into pieces and then proceeded to rant and advocate for the continued push to fight until the Lancet retracts it and everyone accepts that it was a piece of junk. He got a standing ovation.

My point is here, that for all you in the UK, having someone like Sonia, whether you like her or not, support the new direction of AFME or not, her presence at this conference was a good thing.

This new alliance that no one knows about? Very bad. Not sure what to make of this. I might even contact her, say I met her at the banquet and ask her directly. Worth a shot.
Good idea, contacting her. But don't count on truth changing her mind. That seems to be a problem with a lot of people.
 

trishrhymes

Senior Member
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Just looked at Action for ME meeting /conference this Friday (tomorrow) which is going to be live streamed. It's called Collaborating for Change and includes a session led by Chowdhury titled: Our global movement. I'm guessing her new International Alliance might be unveiled there.
 

Molly98

Senior Member
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Just looked at Action for ME meeting /conference this Friday (tomorrow) which is going to be live streamed. It's called Collaborating for Change and includes a session led by Chowdhury titled: Our global movement. I'm guessing her new International Alliance might be unveiled there.
would you have a web address @trishrhymes you could point me towards to watch this live streaming? could be interesting! Thanks

It's Ok I have found it.
 
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Just looked at Action for ME meeting /conference this Friday (tomorrow) which is going to be live streamed. It's called Collaborating for Change and includes a session led by Chowdhury titled: Our global movement. I'm guessing her new International Alliance might be unveiled there.
Perhaps the other members will be interested to find out that they're in it.
 

lilpink

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. In her defense, she wanted us to know that she came on as CEO after a lot of the damaging things had been done at AFME.
Not a defence at all. She has signed off on scurrilous stuff. If she had any nous she'd leave and whistle-blow because otherwise she'll be going down with the rest of the ship. (I;m sure the rest of the 'crew' don't keep her fully informed but by virtue of her position she must know where some of the bodies are buried).