Action for ME's administration and how that affects its views about treatment

Sasha said:
@large donner, although we see some aspects of this differently, I think you raise an interesting question about who funds AfME (if anyone - I don't know whether they have large donors or just get funding from individual patients).

Would you like to start a new thread on that? I'd like to keep this thread to the topic of what AfME's current position is on PACE.
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I dont think its worth starting a new thread because if you want to get to the bottom of 'what is AfMEs current position on PACE' I think you wont get any further after Clares 'ongoing debate on PACE' comment without connecting the dots on the questions I have posed here on this thread and why Sonia has a 'head of communications'. I dont have much else to say on the matter to be honest and that's another reason I wont be starting another thread.
 
large donner said:
@Sasha Sorry I just dont agree that we cant question Clare on her communications, whether she is paid or not and how much just because Sonia should be answering questions too. I think you are missing something here, I did not come here and tell you that Clare is the head of communications, SHE DID!
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I'm sorry, I don't understand your point (the joys of the internet!). I know Clare is head of comms. That doesn't mean that she has the freedom to say what she wants. We can certainly question her about what she says but I think we have to appreciate that it's unlikely to be her who is providing the answers and, as such, it's unlikely to be a productive discussion. She isn't free to speak without restraint and is here to voice the official position of AfME, not her own.

If we want real answers, we need to be talking directly to the person responsible for creating them, not for voicing them, because that's the source of the problem.

If that person is Sonia, I'd like it to be Sonia who comes here. If Sonia has a more reasonable view on PACE but is fighting others within AfME about what can be said, I want it to be those others.
 
Sasha said:
I'm sorry, I don't understand your point (the joys of the internet!). I know Clare is head of comms. That doesn't mean that she has the freedom to say what she wants. We can certainly question her about what she says but I think we have to appreciate that it's unlikely to be her who is providing the answers and, as such, it's unlikely to be a productive discussion. She isn't free to speak without restraint and is here to voice the official position of AfME, not her own.

If we want real answers, we need to be talking directly to the person responsible for creating them, not for voicing them, because that's the source of the problem.

If that person is Sonia, I'd like it to be Sonia who comes here. If Sonia has a more reasonable view on PACE but is fighting others within AfME about what can be said, I want it to be those others.
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Well i dont disagree with most of what you said there but thats my whole point, almost. I am just directing questions at AfME regarding how they got to their current position on the PACE trial.

AfME is a waste of space but I dont automatically excuse people because 'they are just doing their job'. That's a slippery slope.

Basically what I am saying is it seems a bit strange questioning me on why I am asking questions of the head of communications who came here and described herself as such.
 
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large donner said:
AfME is a waste of space but I dont automatically excuse people because 'they are just doing their job'. That's a slippery slope.
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I certainly agree that each of us has to take responsibility in life for what we say or do (regardless of whether we're getting paid for it!). I hope Clare is considering this.

But our problem here isn't Clare, who is just a spokesperson. Our problem with AfME is whoever in AfME is driving this, and it's them we need to be dealing with, directly. They need to be accountable, but we don't know who they are.
 
large donner said:
I hope i can make this my last post on this matter.....

I reserve the right to shoot the messenger If I ascertain in a given situation after evaluating the position that the messenger could have spoken out. We should all reserve that right in every situation... :bored:
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I think that's fair enough. My concern here is that Clare may have been pushed blindly into this without realising that there were important issues about PACE to be understood. But after all the discussion on this thread, ignorance of the issues would now not be a tenable position.

My hope would be to see not Clare back here discussing this, but the author of AfME's opinion on PACE.
 
The title head of communication sounds very corporate though and often such positions employ a skilled PR person to advise on what to say what not to say, when to shut up etc, and often they are actually the controlling factor in the brand. That's why I went into whether its a paid position or not, how much it pays and whether there is a possibility its even a position that is being sponsored by someone. We have no idea who is advising who on what to communicate between a CEO and a potential PR person being remunerated. Even prime minsters dont write their own speeches.
 
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large donner said:
The title head of communication sounds very corporate though and often such positions employ a skilled PR person to advise on what to say what not to say, when to shut up and often they are actually the controlling factor in the brand. That's why I went into whether its a paid position how much it pays and whether there is a possibity its even a position that is being sponsored by someone. We have no idea who is advising who on what to communicate between a CEO and and potential PR person being remunerated. Even prime minsters dont write their own speeches.
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Interesting - my experience is of it being very top-down and I hadn't considered the reverse. In the case of talking about PACE, it seems unlikely that a PR person would be controlling the narrative for a charity but if that's so, then that's what we need to know, not Clare's salary.

I also hadn't considered the possibility that her salary, if she has one, might be sponsored. That would be a new one on me but Clare (@Action for M.E. ) might like to put minds at rest (or unrest, as the case may be) about that.

(I'm sorry to seem to be talking about you as though you're not here, Clare. It's rather awkward knowing how to refer to someone on a thread to which they're also a party.)

The main thing for me is to identify with whom, at AfME, these PACE messages originate.
 
currently three paid vacancies at AfME:
  • Welfare Rights Adviser
    Action for M.E.
    • £19,000 to £23,000 pro rata, dependent on skills and experience
    • Bristol, South West
    Closing: 23 April 2018

  • Save job
    Information and Support Officer
    Action for M.E.
    • £16,000 to £18,500 pro rata dependent on skills and experience
    • Bristol, South West
    Closing: 23 April 2018

  • Save job
    Community Fundraiser
    Action for M.E.
    • £19,500 pro rata
    • Bristol, South West
    Closing: 04 April 2018
https://www.charityjob.co.uk/recruiter/action-for-m-e-/20866
 
Sly Saint said:
currently three paid vacancies at AfME:
  • Welfare Rights Adviser
    Action for M.E.
    • £19,000 to £23,000 pro rata, dependent on skills and experience
    • Bristol, South West
    Closing: 23 April 2018

  • Save job
    Information and Support Officer
    Action for M.E.
    • £16,000 to £18,500 pro rata dependent on skills and experience
    • Bristol, South West
    Closing: 23 April 2018

  • Save job
    Community Fundraiser
    Action for M.E.
    • £19,500 pro rata
    • Bristol, South West
    Closing: 04 April 2018
https://www.charityjob.co.uk/recruiter/action-for-m-e-/20866
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All pretty standard salaries. If anything, they're low for the South.
 
Andy said:
Right, so not giving out personal information to a random person on an internet forum allows you to deduct certain things does it? More than just that they would like to keep their private information private?

And who funds me? I have no intention of telling you. So what does that tell you about me then?
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Is this like the one when you have to work out who’s lying
 
Large Donner - I think we'll have to agree to disagree. But, for what it's worth, demanding salary information, referring to charities as puppets and implying that its position is deliberately bad faith in order to keep shadowy donors sweet is far more likely to feed into a 'vexatious' narrative. The truth is far more likely to be cock-up than conspiracy: AfME threw its weight behind GET/CBT, thinking it would work, and having tied its colours to the mast in the face of a lot of patient criticism is now finding it hard to row back. I'd also point out that AfME is still tiny as charities go (couple of hundred grand in income, <20 staff IIRC) so I really don't think anybody is in it for the money.

I would prefer to stick to the approach of imploring AfME to consider the reanalysis of PACE, combined with the results of all long-term follow-up trials, when deciding what to tell patients about GET/CBT, and asking them to justify whatever their output is on the topic. The rest is counterproductive, IMHO.
 
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I think it would be fair to have @Action for M.E. comment on whether they've received money from the DWP, or other government departments.

Someone who was formerly involved with the charity raised concern that this is affecting their willingness to speak out on the problems facing patients.

 
I’ve often wondered about funding. When I first got sick, I was advised to avoid AFME and look for support from the MEA by people employed by the NHS. I assumed at the time that this was because AFME was somehow radicalised and deeply political. Another wrong impression to chalk up to experience.

It does seem that there is some tie in to muzzle them as a charity though. I guess this could be DWP or some other form of institutional bias ..perhaps one of the trustees is married to a politician or has a close network of BPS friends? Perhaps it is just a warped culture?

I don’t care why really because either way it’s corrupt to say one thing and do another whilst taking money from the public under false pretences.

I just can’t reconcile how they could sit on the fence when harm is the potential outcome as a result of their advice. It certainly shows that care of their members is very low down on their list of priorities.

The silence is deafening by the way @Action for M.E.
 
I've just googled Action for ME funding.
Action for ME is a registered charity.
It has received substantial funds over the last 20 years from the Big Lottery Fund which uses national lottery money to fund charities.
https://www.biglotteryfund.org.uk/funding/search-past-grants/organisation-details?on=Action for M.E.
Action for M.E.
Projects funded
Action for M.E.
£125,705 on 16 Dec 1997
Action for M.E.
£120,901 on 09 Nov 1999
Action for M.E.
£175,425 on 12 Jul 2001 at EC4V in City and County of the City of London, EC4V.
Establish CFS/ME Observatory for epidemiological & social research
£503,028 on 28 Feb 2006 in City of Bristol
SEE M.E. (Support, Empower and Employ people with M.E.)
£10,000 on 31 May 2014 at BS16 in South Gloucestershire, BS16.
Action ME - Hear me, Influence M.E.
£9,602 on 31 Jul 2014 at EH14 in City of Edinburgh, EH14.
Support M.E. - Children's Services
£9,260 on 05 Dec 2017 at BS31 in Bath and North East Somerset, BS31.
Educate M.E.
£9,966 on 16 Feb 2018 at G2 in Glasgow City, G2.
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On its own website, AfME says this:
https://www.actionforme.org.uk/reso...ervices-and-support-does-action-for-me-offer/
Apart from a small grant in Scotland, Action for M.E. receives no Government funding and we rely upon the generosity of our donors and supporters to continue our vital work.
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AfME or any other charity doesn't necessarily have to be conflicted via any potential government donations directly. The issue of the revolving door is one that is often looked at in commercial industries for example and perhaps even more so in charities whereby influential people in the establishment hold joint interests in both government policy and private industry and potential a charity.

Lets not forget that anyone can set up a charity with any ongoing purpose in mind. Donations are also crucial to the direction an organisation takes and conflicts of interest, we only have to look at political parties to understand this.

People might want to consider the controlled opposition idea also. SMC and BACME are obvious candidates for such. The classic stance of the controlled opposition is to set up an interest group and tell some truths to draw in people to make them believe in the entity but then at the same time spin and and try to take their place as the authority on a given issue.

Its my opinion that AfME is conflicted via certain controllers like Peter White, Esther Crawley and perhaps even Wessely in the background using the SMC etc to give an appearance of a non direct control over a the charity so they can manoeuvre it into issues like PACE and SMILE etc to favour themselves.

The people inside the charity itself don't necessarily have to be "part of a massive conspiracy", they just need to know where their bread is buttered after they get their desk in the office or at least weak enough not to question a controlled narrative. Maybe they even are conflicted enough to just turn a blind eye to the obvious.

Thats the most diplomatic way I can put it.
 
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