New Org!: ME/CFS International Alliance

[Solstice]

It's tomorrow, Friday 18th November.

Allright, i figured i was watching a rerun. Not sure from who.

 

[Dx Revision Watch]

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.

There is currently no website for this "Alliance".

The only online references are on AfME's Facebook page and this AfME News page:

https://www.actionforme.org.uk/news/

https://www.actionforme.org.uk/news/me/cfs-international-alliance-protests-shorter-lecture/

"Bringing together M.E. advocates and charity representatives from six countries, the M.E./CFS International Alliance has written jointly to the National Institutes of Health...

"...At our meeting on 7 November, we discussed your Department’s decision to invite Dr Edward Shorter to present a lecture to you on 9 November 2016 entitled “Chronic Fatigue Syndrome in Historical Perspective”. On behalf of the many people represented by our organisations, we felt compelled to write to you...."

As someone has already pointed out "our meeting on 7 November" could imply a meeting of the "Alliance". But it may refer to an AfME meeting that the others listed as "current members" of the "Alliance" were not involved in.

"On behalf of the many people represented by our organisations, we felt compelled to write to you...."

suggests all the organisations listed under "current members" of the "Alliance" were party to, and had signed off on this "joint letter". This appears (at least in the case of MEAction) not to be the case.

 

[Chrisb]

I may be being even slower than usual, but I am unclear as to what Chowdhury is saying in her letter to Grady which @AndyPR linked to above at post #14.

She seems to use the word "our" ambiguously. Does she mean that there was a meeting on 7 November between her and Grady, or does she suggest a meeting of the implied co-signatories? We know that at least one of the supposed co-signatories never even received notification of any such meeting.

 

[Dx Revision Watch]

I may be being even slower than usual, but I am unclear as to what Chowdhury is saying in her letter to Grady which @AndyPR linked to above at post #14.

She seems to use the word "our" ambiguously. Does she mean that there was a meeting on 7 November between her and Grady, or does she suggest a meeting of the implied co-signatories? We know that at least one of the supposed co-signatories never even received notification of any such meeting.

Posts crossed - see my post, above.

 

[Dx Revision Watch]

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:

https://twitter.com/i/web/status/795649520579309568

https://twitter.com/i/web/status/795948497417760768

 

[Chrisb]

What we appear to have then is a meeting of AFME following which a letter is sent to Grady. The extract of the letter does not make it clear by whom or on whose behalf the letter was sent, but the information on the web page gives the clear impression that it was sent by and on behalf of the "ME/CFS international Alliance" as represented by those whose names appear; notwithstanding that there was no express, implied or ostensible authority to act on behalf of at least one of the purported principals.

And this is the organisation tasked with representing patients' interests to MEGA.

 

[Dx Revision Watch]

What we appear to have then is a meeting of AFME following which a letter is sent to Grady. The extract of the letter does not make it clear by whom or on whose behalf the letter was sent, but the information on the web page gives the clear impression that it was sent by and on behalf of the "ME/CFS international Alliance" as represented by those whose names appear; notwithstanding that there was no express, implied or ostensible authority to act on behalf of at least one of the purported principals...

Indeed.

 

[Dx Revision Watch]

I suggest those who can access the livestream ( http://www.ustream.tv/channel/w9gF6Ps3Nkd ) of tomorrow's AGM pay particular attention to these two presentations in the first half of the meeting:

http://collaboratingforchange.eventzilla.net/web/event?eventid=2138879377


10.10 IMPROVE INSPIRE and INVEST Our five-year strategy for change Sonya Chowdhury, Chief Executive, Action for M.E.

and

Working internationally

12.50 IMPROVE INSPIRE and INVEST Our global movement Sonya Chowdhury

Edited to add: To livestream, you may be asked to sign up for an account (requires email and password) for immediate access to live video.

 

[Wildcat]

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You CAN watch the livestream without being signed up - but if you want to comment you will need to sign up.

http://www.ustream.tv/channel/w9gF6Ps3Nkd

 

[Wildcat]

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If anyone is signed up to comment - could they ask how many charity members Action for ME have these days?

The last count was 5,000 ... down from 8,000 in the mid 2,000s

 

[Dx Revision Watch]

.
You CAN watch the livestream without being signed up - but if you want to comment you will need to sign up.

http://www.ustream.tv/channel/w9gF6Ps3Nkd

I couldn't view live without opening an account. But try without an account first.

You can sign in with a FB account.

 

[Dx Revision Watch]

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If anyone is signed up to comment - could they ask how many charity members Action for ME have these days?

The last count was 5,000 ... down from 8,000 in the mid 2,000s

I can see a box for "Chat with other viewers" but can't see a means of asking questions of the panel.

 

[Dx Revision Watch]

Nothing of specific relevance to this thread during the five-year strategy segment. I'll pick up the video again after lunch for:

Working internationally

12.50 IMPROVE INSPIRE and INVEST Our global movement Sonya Chowdhury

 

[Wildcat]

.
.
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."

.
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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[Wildcat]

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I can see a box for "Chat with other viewers" but can't see a means of asking questions of the panel.

If you click on 'chat' a little sign with people shapes comes up. Click that and you will have to give a 'name', which I think you can choose. Only people who are logged in can comment apparently -

 

[Cheshire]

.
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."

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)

Why don't AfME just start listening?

 

[Wildcat]

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"Why dont AFME just start listening?"


And why doesn't AFME start answering basic factual questions relating to its charity? Answers that should be in the public sphere


Someone has asked AFME in the video chat box, how many members AFME have (at the end of 2015) - AFME won't answer - saying they don't have that figure to hand and "can only answer questions that are directly related to the presentations."

Its just not believable that afme staff dont know how many members it has.

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[Dx Revision Watch]

This exchange posted on the Chat feed down the righthand side of the livestream page has mysteriously disappeared:

lizziedripping 10:54 AM How did the membership of AfME stand at year end 2015, please

Action4ME 10:55 AM I don't have those figures to hand Lizzie, sorry. I can only answer questions that are directly related to the presentations.

lizziedripping 11:54 AM Could my Q re membership numbers be raised as a Q during session "Questions on the Treasurer’s report for 2015-16 and on the Trustee Report and Accounts of the Charity to 31 March 2016", please?

 

[Wildcat]

.Someone repeated the question to afme -

Sweetie7734 11:07 AM AFME - why can you not just answer the question by a person on this channel, and state how many members the Charity has? The question is not unreasonable. Yet you appear to have deleted the quesion previously asked, without answering .


Action4ME 11:13 AM Hi Sweetie7734, as I said earlier, I don't have access to those figures. I'm monitoring the technical aspects of this livestream. If I get a chance I will try to pass on questions later.


Sweetie7734 12:15 PM So can viewers not pass on questions to the Panel via this comment section? I rather hoped that would be possible x

.

 

[Dx Revision Watch]

It's called a "Chat" facility. It doesn't stipulate the person on duty is there to field technical queries only.

Whatever it's purpose, it wasn't necessary to redact a perfectly reasonable and polite question about membership figures.