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New Org!: ME/CFS International Alliance

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Action4ME 12:21 PM We're currently only taking questions from members of the audience who are in the room to ensure we stay on schedule. I will have to check whether or not questions can be taken from the livestream for the afternoon sessions.

Sweetie7734 12:25 PM Thats rather disappointing to people who are too ill, and/or too distant to attend the AFME Conference.



Sweetie7734 12:24 PM Hi AFME - about diagnosis - the Canadian Consensus Criteria (CCC) have been in existence since 2003! Why have neither AFME or the APPG lobbied to have the CCC (or the later International Criteria, ICC) adopted as official UK policy? After all, those diagnostic Criteria are ME Criteria, designed to identify ME from other conditions which feature fatigue?Criteria,
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Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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Re "Our Global Movement" and the "International Alliance" (at around 12.50):

Sonya said that since 18 months ago, she had been talking to groups in the USA, in Canada, Australia, Japan and other countries, but named no specific orgs or org reps other than Solve CFS (at that point she introduced a short video by Carol Head and a man whose name I did not catch).

Although as Wildcat says, a list of "current members" of the International Alliance has already been published by AfME - a list that #MEAgenda, at least, is in the process of investigating.

She said of the alliance "we are exploring what that means".

So despite the list of "current members" published on 7 November, the "alliance" was presented at today's annual meeting and AGM as a nebulous concept.
 
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slysaint

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Have tried to watch the recording but my pc doesn't like it much!
Anyway, I listened to a bit after the guy from the Phenome Centre Birmingham, who was talking about Metabolomics.
SC from AfME answered the first
Q. - how did someone get onto the MEGA project...........
A. No protocol yet, blah,blah, once the MEGA website is set up in the next week or so they will be recruiting an Advisory Group of 12-15 people

Q. were they familiar with recent work done by Ron Davis and Naviaux? Had they had any contact with them?
A. guy from the Phenome Centre Birmingham: He would love to be in touch with both of them and hoped to meet them some time next year...........
SC then butted in: says AfME has been in touch with the Open Medicine Foundation who are apparently keen to collaborate so this will be one contact for the MEGA team.

@Ben Howell do you know if this is true?

There were only 2 more questions to this speaker
1 about deconditioning and the other about lifestyle and environmental factors being taken into consideration.:confused:

I'm going to have to wait for it to be posted on Youtube to watch it properly, but just the little bit I saw was worrying enough as NO ONE appeared to be asking the questions that we would all like answers to.
 
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Esther12

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On 7 November, this meeting/presentation was held in Bristol. Possibly the Shorter issue was discussed during this meeting:

https://www.actionforme.org.uk/news/celebrating-see-me-project-success-today-in-bristol/

As reported on @actionforme on Twitter:


Is that AFME dancing to the DWP's tune? Wonder how great that will be for patients.

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The woman speaking at AFME's conference 11am, Christalla Bailey, representing M.E. Support in Glamorgan, was encouraged by her International Evangelical Church leaders to start a local Church branch and an 8 week 'Healing Rooms' course of a Christian Evangelical movement, 3GMinistries, on the basis that she recovered from ME by a Miracle:

http://healingroomscardiff.co.uk/healing-rooms-team/

3G Ministries- Our Team – Healing Rooms Cardiff Founders

Christalla Bailey
"We started a “House Of Prayer” after I got miraculously healed after 23 years of M.E. After being encouraged by our local church leaders to start an eight week course in our home, we started the House Of Prayer, a year later we started Healing Rooms. This was because we saw so many answers to prayer that we had to open our doors for others to experience what was taking place. I am thankful to our wonderfully dedicated team and to God for guiding us."

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I do hope that Christalla Bailey's Evengelical religious group is not recruiting people with ME on the basis of her Miraculous healing and her religious Evangelism about her miraculous healing.



What are the ME Glamorgan org thinking of!
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Ugh.

:eek::eek::eek::vomit:

This is really appalling. Would a serious MS or diabetes charity do that?

I remember they invited a group praising ancestor healing.
http://forums.phoenixrising.me/inde...-for-company-peddling-ancestor-healing.41194/

This is one of the slides that just came a few minutes ago (sorry don't know the speaker)
View attachment 18347

Why don't AfME just start listening?
"Our behaviour is indefensible, so lets put those differences aside, and just pretend you all want the same thing as us."
 
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Cinders66

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What is the point of AFME being in a global alliance - they won't lobby on funding, they see all CFS as ME and endorse no criteria so nothing to unite around there, they don't have resources to fund much research in England let alone further afield and over here, at least, they work with/defend the controversial people often.
 

Jo Best

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What a sick joke and pathetic excuse for a charity trying to play chameleon to appear as though they are the ones that 'invest in ME', form an 'international' 'alliance', 'collaborate for change' etc. etc. That Canadian org. donated to the Invest in ME Rituximab Research by the way, perhaps that's how they appeared on the radar for AfME (just speculation) - http://www.ukrituximabtrial.org/IIMEUKRT Funders.htm
 

AndyPR

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Guiding the lifeboats to safer waters.
Response from Solve ME/CFS Initiative to the question about the ME/CFS International Alliance,
Hi Andy,

Thank you for your question. As you know, the Solve ME/CFS Initiative (SMCI) has been leading the call for the NIH to provide scientific grounding and balance regarding the invitation of Dr. Shorter. We are pleased that other folks from around the world have joined us in that effort.

Action for ME has approached several organizations, including SMCI, to discuss forming an international collaboration. At this time, we have been invited to join the conversation, but nothing formal has been established.

The letter you refer to was a single action in response to the Dr. Shorter issue where we all stand in solidarity. As far as I know, there are no additional formal actions planned.

Thank you for bringing this item to our attention and thank you for your hard work for ME/CFS!

All the best,

~Emily Taylor Advocacy and Engagement Manager Solve ME/CFS Initiative
Emily apologised in the delay responding, should anybody have any further questions/need to contact her, her email is etaylor@solvecfs.org
 

Chezboo

NOT MY BOARD
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Is it just me or is that statement from Solve a bit woolly? It sort of clarifies nothing, in fact it leaves me more confused than ever.

Emily Taylor from Solve ME/CFS Initiative says:

“At this time, we have been invited to join the conversation, but nothing formal has been established”

Then Emily goes on to say:

“The letter you refer to was a single action in response to the Dr. Shorter issue where we all stand in solidarity.”

Ummm. I am having great difficulty digesting this. The two statements do not sit comfortably together. Nothing has been established and yet they stand in solidarity on behalf of this so called ‘alliance’ carried out on behalf of all the members listed on AfME’s website.

I would like to know how Solve have determined each of the member positions on this when ‘nothing formal has been established’. According to Jen Brea she at least (listed as an alliance member for #MEAction USA) has not been on a single call. In fact, it would seem membership to this ‘alliance’ was so secret that even some of its members didn’t know they were members.

Jen Brea says:
“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.”

Based on Jen’s post alone we can say that AfME are making statements on behalf of organisations without their knowledge let alone approval. Like wow! Quite literally outrageous, in fact I am lost for words.

What are AfME up to? What’s going on with Solve here and why the obfuscation from them?
 
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Gamboa

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p.s. I wonder if Sonya Chowdhury know that Open Medicine Foundation asked people to sign the Opposing MEGA petition (on their facebook page on a post about The Global M.E. Chronicle).
I am fairly positive that she knows very much how much the MEGA, Pace and other British Pysch crap is viewed by the scientists, doctors and patients who attended to IAME/CFS conference. The science showing that our illness is very much a multisystemic, very real, possibly autoimmune, inflammatory disease with PEM as a core symptom was overwhelming. The vibe in the air for the four days of this fantastic conference was one of excitement and change coming in the very near future. There is no place for GET and CBT anymore and it was only discussed when being discounted or disproven as being helpful for ME/CFS.

Sonia Chowhdury must have felt like she was swimming in an aquarium full of sharks. My viewpoint on the CBT/GET crowd and the Pysch crowd who think ME/CFS is not real is that are all going to be looking really stupid in the very near future. We are so close now to cracking this disease wide open and once that happens, all those that didn't support us will be a very sad and sorry lot. I can't wait. :)