AfME gives platform for company peddling "Ancestor Healing"

Kyla

Kyla

ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ
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@Hip agree with what @BurnA and @worldbackwards say.
in addition to those points, the major hypocrisy for me is that they keep refusing to disavow GET and CBT because they claim these are "evidence based" (and they don't seem to care about the quality of the evidence). In light of that their support for completely unproven, untested, and frankly wacky therapies is mind-bogglingly hypocritical. They can't have it both ways.
 
Research 1st

Research 1st

Severe ME, POTS & MCAS.
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768
If AFME changed their name to AFCF (Action For Chronic Fatigue) things might be a lot simpler and less confusing for people with life long neurological ME.

Myself and others have no problem at all with 'Chronic Fatigue' representation (of any kind), as long as the word is not attached to the disease ME (as ME is a disease and Chronic Fatigue is a symptom). Otherwise it wouldn't be safe. So removing CF from ME, is simply an issue of safety. This is why the WHO call ME, ME, and not CF/ME, or CFS/ME. It's just, ME.

In the UK, ME sufferers are mislead by the medical profession and their claims of effective treatment using NICE and the NHS ME denial lobby, claiming CBT/GET works. However, this has now been proven to be science fraud for F48.0 psych CFS, never mind G93.3 ME. So CBT/GET needs to go.

For reasons I can't fathom, AFME support CBT/GET, yet PACE didn't work for F48,0 Psych CFS.

So on that basis, I cannot see how an 'Action for ME' can continue to now support a totally discredited, false therapeutic intervention (CBT/GET) for Myalgic Encephalomyelitis, and accurately use the name, 'ME' in the charities title.

Can people complain to the charities commission about the accuracy of a charities designated name I wonder?
 
Wildcat

Wildcat

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1,446
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Charity Commission = Chocolate teapot.

AFME have low (fallen) charity membership numbers (5,000 members at last enquiry in 2011) ... and far too much influence. For example AFME is on the inside of the MRC ME Collaborative (CMRC) and does Secretariat duties for the Collaborative, but wouldn't pass on a question to the CMRC conference asking how we move on from th PACE research.

There is a long history of attempts to make AFME accountable, including many informed complaints to the charity commision, over many years.

Just because the efforts of so many UK patients and other advocates to make afme accountable haven't worked, does not mean that the attempts were not substantial and well thought out. AFME sidelines or just ignores all valid criticism.

.
 
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W

worldbackwards

Senior Member
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2,051
Wildcat said:
Just because the efforts of so many UK patients and other advocates to make afme accountable haven't worked, does not mean that the attempts were not substantial and well thought out. AFME sidelines or just ignores all valid criticism.
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Am I right in my memory that it's trustees aren't elected (like the MEA) but appointed?
 
Hip

Hip

Senior Member
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18,161
Wildcat said:
@Hip ... AFME have been alerted to the exploitative and cultish activities of Qi Wellness. See earlier posts in this thread.
Click to expand...

Are you referring to this post, where AfME are asked in a Tweet: "please provide rationale for giving AGM platform to company selling ancestor healing."

I don't see how that warns of the alleged cult brainwashing and money extracting activities of Qi Wellness. I would expect a well-written email to AfME, citing evidence.
 
Wildcat

Wildcat

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There is long history there, @worldbackwards. AFME insisted their members did not have the right to vote for trustees from its enception until 2010. It was only due to intensive campaigning by ME advocates on afme facebook that afme relented. But members also have a constitutional right to stand for election to be trustees, without afme first vetting and selecting their prefered candidates. AFME now denies its member that right. Numerous afme facebook members have been banned from afme FB for challenging afme's accountabillity and refusal to obey its own Constitution on that matter.

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Wildcat

Wildcat

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1,446
Its not ME bullshit, its a damn lot of hard work by a handful of informed and determined pwme and carer/advocates. I am too wiped out to go locating stuff at present. Lots of historical material on the effort over years.
 
Wildcat

Wildcat

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@Hip Following tweets by dx revisionwatch and others brought afmes attention to the company's dodgy agenda. As someone who has written numerous well written emails to afme, over years, I can state that its a supreme waste of energy.
Sonia Chowdhury knows that dx revision watch means business.
 
W

worldbackwards

Senior Member
Messages
2,051
Wildcat said:
Its not ME bullshit, its a damn lot of hard work by a handful of informed and determined pwme and carer/advocates. I am too wiped out to go locating stuff at present. Lots of historical material on the effort over years.
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Reams of paper, broken files, bits out of order, hard to separate relevant from nonsense, fact from fiction, Wessely interviews from doctors promoting latest twaddle, etc. Oh...

Anyway, I was talking about my ME bullshit, I'm sure yours is all beautifully organised and perfectly relevant. :)
 
Wildcat

Wildcat

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1,446
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The trustees are elected now, as I explained in a previous post, only due to intensive (and embarrassing for afme) campaigning onafme FB in 2009/10. But only the people who afme wants are able to stand to be elected as trustees, whereas in law all members have the right to stand. AFME refused to hold an agm that members could attend from its inception until 2010. See my post #69.
 
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Hip

Hip

Senior Member
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18,161
Wildcat said:
If my files were organised, @worldbackwards, I would have the relevent documents for you by now. I can't bloody file.
Click to expand...

Without the "Spotlight" search on my Mac (equivalent to the Windows search on PC), which indexes the contents of all your text documents, I'd never find anything I had previously saved.
 
Wildcat

Wildcat

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1,446
@Hip, there are advocates who have written a hell of a lot more emails to afme than I have, and made sophisticated challenges to afme's unaccountability.
 
Dx Revision Watch

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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3,061
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Wildcat said:
@Hip Following tweets by dx revisionwatch and others brought afmes attention to the company's dodgy agenda. As someone who has written numerous well written emails to afme, over years, I can state that its a supreme waste of energy.
Sonia Chowdhury knows that dx revision watch means business.
Click to expand...


As Wildcat says, the attention of Sonya Chowdhury (AfME's CEO) has been drawn to this Phoenix Rising thread, where on Page 1 of the thread, she can read the research on this outfit which Scarecrow had already provided.

Sonya has been asked numerous times by myself and others why AfME permitted this outfit a platform at their AGM.

I am given to understand from someone who attended the AGM, last week, that leaflets were also being given out by this outfit.


A selection of exchanges:


Dx Revision Watch ‏@dxrevisionwatch Nov 13
.@SonyaChowdhury Will a spokesperson for @actionforme please provide rationale for giving AGM platform to company selling #AncestorHealing

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Response from unidentified AfME Twitter admin:

Action for M.E. ‏@actionforme Nov 13
@dxrevisionwatch They offered free 10-minute taster sessions during breaks at our conference. Delegates tell us they appreciate this.​

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Dx Revision Watch ‏@dxrevisionwatch Nov 13
.@actionforme So AfME and its delegates are receptive to non evidence based "treatments" like "Ancestor Healing"?????

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Response from unidentified AfME Twitter admin:

Action for M.E. ‏@actionforme Nov 13
@dxrevisionwatch This was offered for relaxation, not as a treatment for M.E.​

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Dx Revision Watch ‏@dxrevisionwatch Nov 13
.@actionforme They sell "Ancestor Healing". Whether it was free or not, whether it was for "relaxation" or not - by giving them a platform...

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Dx Revision Watch ‏@dxrevisionwatch Nov 13
.@actionforme this is irresponsible and unacceptable. I would like to know who is posting these responses, please @SonyaChowdhury

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Dx Revision Watch ‏@dxrevisionwatch Nov 13
.@johnthejack @TheminorityME The fact that they were given a platform at all by an org that supports "high-quality, evidence based medical...

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Dx Revision Watch ‏@dxrevisionwatch Nov 13
.@johnthejack @TheminorityME ...and social policy research" is more than just misguided - it is irresponsible. I'm stunned that Sonya C...

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Dx Revision Watch ‏@dxrevisionwatch Nov 13
.@johnthejack @TheminorityME ...evidently cannot see the problems, here.

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Sonya Chowdhury's response:

Sonya Chowdhury ‏@SonyaChowdhury Nov 13
Sonya Chowdhury Retweeted Dx Revision Watch

Suzi, my team post tweets. We don't pay for QIW input. They've been at our conferences for yrs & never had any issue ​

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Dx Revision Watch ‏@dxrevisionwatch Nov 13
@SonyaChowdhury (It's Suzy). It's not relevant whether you pay them or not. They are peddling non evidence based "treatments", they are...

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Dx Revision Watch ‏@dxrevisionwatch Nov 13
.@SonyaChowdhury ...selling "Ancestor healing" potentially to CFS, ME patients. There is no evidence for any of what this outfit sells.

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Dx Revision Watch ‏@dxrevisionwatch Nov 13
Dx Revision Watch Retweeted John Peters

Absolutely. Not in the past. Not now. #nonevidencebased #ancestorhealing Not paid for or free. @actionforme

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Dx Revision Watch ‏@dxrevisionwatch Nov 13
.@johnthejack @TheminorityME Indeed. And it's irrelevant which of the various "therapies" this outfit sell were given free at AGM.

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Dx Revision Watch ‏@dxrevisionwatch Nov 13
.@TheminorityME @johnthejack No justification for exposing members at AGM and reduces credibility of wider patient constituency.

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Dx Revision Watch ‏@dxrevisionwatch Nov 13
If 1 person with ME, CFS parts with £ for #AncestorHealing due to exposure at @actionforme AGM, 1 person too many

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Dx Revision Watch ‏@dxrevisionwatch Nov 13
From AfME's Report & Accounts 2014-2015 "We support high-quality, evidence based medical and social policy research" but invite non evidence...

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Dx Revision Watch ‏@dxrevisionwatch Nov 13
...based peddling outfits to provide free "treatments" at their AGM #AncestorHealing

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Dx Revision Watch ‏@dxrevisionwatch Nov 13
AfME "We will be clear and transparent about what we’re doing, why we’re doing it and how we’re doing it."

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Dx Revision Watch ‏@dxrevisionwatch Nov 13
Why is AfME providing a platform for http://www.qiwellness.org/ at its AGMs?

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Dx Revision Watch ‏@dxrevisionwatch Nov 15
@actionforme By exposing your membership to #nonevidencebased "treatments" via AGM's? http://www.qiwellness.org/ http://www.qiwellnessblog.co.uk/qi-wellness/qi-wellness-attending-action-for-m-e-event/

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Dx Revision Watch ‏@dxrevisionwatch Nov 15
Call on AfME to be "clear and transparent" on why they facilitate promotion of outfit peddling "treatments" like #AncestorHealing?

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Dx Revision Watch ‏@dxrevisionwatch Nov 15
"We will be clear and transparent about what we’re doing, why we’re doing it and how we’re doing it." ???? http://forums.phoenixrising.me/index.php?threads/afme-gives-platform-for-company-peddling-ancestor-healing.41194/page-2#post-664487

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Dx Revision Watch ‏@dxrevisionwatch Nov 15
Thread on Phoenix Rising re AfME giving platform to http://www.qiwellness.org/ http://forums.phoenixrising.me/index.php?threads/afme-gives-platform-for-company-peddling-ancestor-healing.41194/…

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Dx Revision Watch ‏@dxrevisionwatch Nov 15
Annual Report makes several references to "evidence-based". No evidence for "treatments" sold by http://www.qiwellness.org/ #AncestorHealing

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Dx Revision Watch ‏@dxrevisionwatch Nov 15
"We will have the moral courage to campaign openly on behalf of people affected by M.E. and.."

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Dx Revision Watch ‏@dxrevisionwatch Nov 15
"to state our evidence-based policies regardless of how unpopular this may make us." AfME Annual Report & Accounts 2014-15

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Dx Revision Watch ‏@dxrevisionwatch Nov 16
.@actionforme What is AfME's rationale for giving outfits selling #AncestorHealing a platform at AGMs? Thread: http://forums.phoenixrising.me/index.php?threads/afme-gives-platform-for-company-peddling-ancestor-healing.41194/

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@Hip, whilst not a patient, myself, I do have carer commitments. Currently, I am also spending a lot of time on admin associated with executing my late mother's estate. But please be assured, that when I have the time, I shall be raising this issue with the Chair of Trustees.



Who is behind Action for M.E.?

Action for M.E.:

http://www.actionforme.org.uk/get-informed/about-us/people/

CEO and Staff:

http://www.actionforme.org.uk/get-informed/about-us/people/ceo-and-staff/

President: Claire Frances

http://www.actionforme.org.uk/get-informed/about-us/people/president/

Vice-President: Martin Arber


Chairman:

Alan Cook, CBE

Trustees:

http://www.actionforme.org.uk/get-informed/about-us/people/trustees/

The Trustees, of course, have certain responsibilities towards the membership.
 
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