Action for ME has joined S4ME

Thank you for engaging with people here.

I personally think adding your name would be helpful for clarity.

 

You could explain those rules any way you want. Insulting might just be a truth that you don't want to hear, as seems to be the case in many instances.

 

Yes, there can in fact be a big difference between feeling insulted and being insulted. One person's truth can be another person's insult.

 

Please explain......

Action For ME continue to fund the research of Esther Crawley

AFME continue to fund the research of Peter White

AFME have had close links with the insurance industry and psychiatrists who work with the insurance industry and the Department for Work and Pensions.
AFME's chairman, Alan Cook, was a chairman of an insurance company.

Michael Sharpe has said "one of the major patient charities (Action for ME) is aligning itself with a more evidence-based approach" in the Unum report of 2002.

AFME also supported the controversial CFS/ME NICE guidelines in 2007 which were opposed by all other patient groups and charities and did not support the judicial review against them

Action For ME did not sign the open letter to Psychological Medicine signed by over 100 signatories including scientists and charities .
Numerous patients requested and pursued AFME to sign an open letter to Psychological Medicine in March but after two month delay they issued their statement in May.
AFME recently published its response patient concerns regarding the use of CBT and GET and the PACE trial for patients and their failure to sign to the open letter to Psychological Medicine .
All major charities from around the world signed with the notable exception of AFME.

Despite repeated requests AFME have still not made a statement about a talk that Esther Crawley, who is/was a medical advisor and receives funding from AFME, presented at a renal conference that maligned patients and accused David Tuller of libel.

AFME did not support or promote the Millions Missing campaign in 2017 and used alternatives but Sonya Chowdhury used the hashtag #MillionsMissing for fundraising for herself and AFME

AFME have obtained money from private corporate donors and used this anonymous corporate donation to fund the work of the controversial researcher Esther Crawley and her Severe Paediatric Study via the charity .
This was questioned and criticised by ME sufferers in forums but AFME removed many posts as they claimed they were defamatory for asking such questions and stated it was from "private corporate donor with a specific interest in seeing the alleviation of childhood suffering" .
In 2018 it was announced that AFME would be returning the money but did not provide a full explanation of the sources of the money and the reasons for doing so.

Involvement in PACE trial

AFME were involved from the beginning by supporting the PACE trial and its researchers from 2003. AFME do not refer to their involvement with the PACE trial now.
However archives are available of their involvement. The PACE trial would not have been funded or conducted without patient support, which AFME provided.
"Despite the anger in the patient community, the investigators were able to enlist Action For ME, another major advocacy group, to help design the pacing intervention.
They called their operationalization of the strategy “adaptive pacing therapy,” or APT."
The Oxford criteria was used for PACE trial participation. The PACE trial was designed with input from the charity, Action for ME.
"From the outset, Action for M.E. and a number of patients were involved in the design of the trial."
"The major innovations in this application include close collaboration with Action for ME."

In February 2016 the charity wrote an open letter to Queen Mary University of London supporting the release of the PACE trial data.

 

Everything you cite @lisette is very pertinent, and somehow this seems to me one of the most abhorrent things I've read about AfME, as if it sums up their whole take on things ... 'take' seeming especially applicable here:

 

Hi @Action for ME ..... Thank you for responding on this thread.

It was me who PMed you to draw your attention to the existence of this thread.


I do wonder if you could respond to my original request, PM to you , that you respond to the specific points made in my post 140 (quoted above), in psrticular the last paragraph (sorry, but I cant technically do cut and paste atm).

The last paragraph of my post 140 on this thread relates to the accountability of AFME and how such accountability operates. As the AFME CEO and trustees who agreed to be involved with PACE, are no longer working for AFME. and are no longer trustees.

When pwme asked AFME, via its FB, to apologise for its role in enabling the PACE Trial, AFME's response was that the staff who agreed to being involved with PACE no longer work for AFME. But AFME refused to apologise for its enabling of PACE.

That raises the question, who at AFME will take responsibility for the decisions and actions of the current CEO, and current Trustees, after the current CEO and trustees have left AFME (whenever that may be).


To my mind, a better and more elegant response from AFME to its members, former members,and the wider ME Community, would be to have acknowleged the harm done by previous AFME policy, and previous staff, trustees, to be involved in PACE, after all, the involvement of an ME charity was noted by the Pace research ethics committee as a strong component in giving PACE Ethical Research approval.

Basically, if AFME does not take responsibility for the decisions of its previous Officials (to support PACE), how can we possibly trust AFME as the charity, to take responsibility for the decisions of its current CEO and Trustees???

I do realise that my post has gone out on the weekend, so in reasonableness, I would not expect any response from AFME until next week.

Thanks,
Nancy

 

Precisely. It is very convenient for an organisation to hide behind the ‘rule’ book & use it as a means to silence legitimate concerns by those it is (mis)representing.
On the subject of MUS & ME being indexed under FND & IAPT, it is extremely worrying. For a start why is ME indexed under access to psychological threatments? Our problem for decades has been too much psychology & not enough physiology, so no thank you NHS but we don’t need more access to CBT/GET.
So unfortunately, while the science continues to debunk PACE & its percursors/offshoots, it actually appears that the BPS model of ME is being even further strengthened by ME’s inclusion under the MUS/FND umbrella. This spells impending/further institutionalised disaster for patients. Do you think we can stop the NHS MUS juggernaut? As a long term patient familiar with the political games being played I am not hopeful at all & believe that things are about to get much worse?

 

Hi @Action for ME Can I ask you, how many Charity members do you currently have (2018). And how many of your current members moved across from AYME, when Ayme joined with AFME ?

Thank you,
Nancy

 

Oh, there was me thinking that afme joined this thread under their own volition rather than being prompted. Tx for your effort for directly contacting them anyway Nancy.

 

Yes, I think so. It may be worth remembering why Napoleon and Hitler lost. They overstretched themselves to the wastes of Russia. They struck out on new fronts at a time when the retaliation against previous gains was already building up. The BPS model has the seed of its own destruction within it - it is empty of scientific content. And I don't honestly think the MUS programme will fly beyond the initial phase of enthusiasm by a Red Guard of young therapists (to mix metaphors). We are currently caught up the pseudo-commercial world of Milburn/Hunt health care. Something has to give because this is a Ponzi scheme that is eating at its own backside.

 

A very nice comparison between Hilter and BPS school, couldn't have put it better myself!

Yes, I know you didn't mean it like that, just let me have my bit of fun

 

@lisette, you raise excellent points showing the many things Afme have done wrong, but briefly I don’t believe they are currently funding any research by Crawley and Peter White. They did help fund research by Crawley in the recent past. I don’t know about Peter White. Also Crawley is not their medical advisor. She was for Ayme who have now folded and become part of Afme. Crawley was not taken on a medical advisor to Afme when this happened. However, those points aside, the fact remains Afme did fund research by Crawley before and did all the other things you list. They have yet to address this.

Postscript:

I have found that it is correct Afme as well as funding a Crawley research study also helped fund one of Peter White’s research studies in 2014. Link here https://www.actionforme.org.uk/reso...he-neurophysiology-of-pain-in-me-study-about/

 

@lisette, the issue of the ‘possible’ continued support of prof Crawley by Afme was raised on FB last year. That’s when the CEO made a post calling our concerns on this issue ‘vexatious’ and ‘time wasting’. I don’t think there is any future funds going to Crawl

how long has their current CEO been in her post? Think earlier than 2014 no? Also the board of trustees might be partly/fully the same as when they funded all these psych studies.

 

Wish I could share your optimism. Also not quite sure the situations are analogous? Russia had 30m people as cannon fodder to beat hitler. A group of very sick patients many of whom can’t even leave their beds let alone their homes to even be seen by a specialist isn’t quite as effective as 30m healthy Citizens. Factor into that a crumbling/fractured NHS with hardly any practicing or even upcoming medics prepared to stick their necks out on our behalf, for fear of losing their jobs & the outlook is bad. My own immunologist who runs the local CFS clinic and is the only NHS doctor in England I can think of who isn’t on the side of the psych lobby, is retiring later this year to the utter despair of 100s of ME patients in London and the SE. All UK cfs clinics are headed by psychs or even psych nurses or OTs. Neurologists were long ago made to ideologically trivialise ME & then drop it altogether & defer to the psychs. Things on the ground are really bleak

 

According to Afme website, the CEO, Sonia C, was appointed in September 2012 so was in place when both Crawley and White got funds from them. Also yes some of the trustees may have been in place when they got involved with PACE, 2007 NICE guidelines and so on.

 

I appreciate this probably brands me as bit of a conspiracy theorist, but do you not think there might be clandestine pressures through politically driven old-boy-network channels to drive the NHS toward minimal cost 'solutions', given the financial pressures there are on the NHS? I could easily believe that a few empathy-challenged, high placed politicians might be far more interested in their political objectives, than people's lives and well being.

 

Precisely. MUS label illness: don’t do any more costly investigations and fob them off with CBT/GET

 

Yeah I thought so, which makes the continuing MEA CULPA meaningless

 

tipping point: "the time at which a change ... cannot be stopped".

i find that optimistic. we need hard slogging. many victories alem-scale and larger. and then we achieve a tenuous beachhead, like omaha. and then we have to break through. and so on.

 

Also banned from their Facebook and Twitter and didn’t break any of those rules.