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

large donner

large donner

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This thread has been split from What is Afme's current position on the PACE Trial?. Issues relating to AfME's staff, trustees and advisors and donors can be discussed here. Please keep the discussion civil and compliant with our forum's rules.

@Action for M.E.
Hi Clare do you have a paid position in AfME and if so what is your annual salary. Also can you tell us how much Sonia gets paid per year.

Thanks.
 
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It's great that you are engaging here, Clare, thank you.

I share the perspective that's being expressed here regarding the incongruity of some of the organisation's positions.
Something does not really compute, so I am wondering if it possible to know who your biggest donors are?
That may clarify some of the key positions the organisation has been taking despite the growing body of evidence.
 
Following on the concern expressed about who is advising AfME on what to put on their website about treatment, and what to include in their medical webinars, I've been doing more digging:

I have looked at the AfME website and found this about their medical advisors:
https://www.actionforme.org.uk/about-us/our-medical-advisers/

The present Medical Advisors are Prof. Julia Newton, well known biomedical researcher, and Dr Gregor Purdie, about whom I know only what is stated on the website:

Dr Gregor Purdie
Dr Purdie became interested in M.E. as a junior doctor and has since co-authored the Scottish Good Practice Statement on M.E./CFS. He now has a specific remit from the Dumfries and Galloway Health Board to advise on service provision and education and training. Dr Purdie says:

"I’ve met Prof Julia Newton at conferences and read her work. I’m especially pleased to be working with her now as it will bring together research and specialist practice together with my background in primary care. This will foster the development of seamless services for people with M.E.”
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I found this document about how research funding decisions are reached:
https://www.actionforme.org.uk/uploads/pdfs/research-funding-assessment-process.pdf

I can't find a list of Trustees anywhere. Are they the body who advise the Chief Executive on important issues like what treatments to recommend and who to employ to do their medical education Webinars, or is that done by the medical advisors?



 
large donner said:
@Action for M.E.
Hi Clare do you have a paid position in AfME and if so what is your annual salary. Also can you tell us how much Sonia gets paid per year.

Thanks.
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From the other place:
"One can view accounts for any charity that gets over £10k in income on the Charity Commission site. The search function is poor, so easier to use th charity number, which for AFME is 1036419 (any registered charities will have this number on their website somewhere). From the accounts, I see that one employee earns over £60k; presumably this is SC as CEO."

http://beta.charitycommission.gov.uk/charity-details/?subid=0&regid=1036419
 
large donner said:
Sometimes one asks questions to record them going unanswered on the public record, or not. The next obvious question is, who funds you?
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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?
 
As somebody whose spouse works in the charity sector I'm going to say I hate the 'Aha! You get paid!' gotcha argument applied to charities. Working for a charity is a professional job and the fact that Clare and Sonia may or may not get a paid salary is 100% irrelevant to A4ME's stance on GET and CBT.
 
large donner said:
@Action for M.E.
Hi Clare do you have a paid position in AfME and if so what is your annual salary.
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If I worked for a charity I wouldn't mind telling you whether it was a paid rather than voluntary position but I'd regard my salary as private information and I wouldn't tell you what it was.

Why do you ask the question, @large donner? How does it relate to the topic of this thread?
 
In the case of a charity there is an interest in how donations are being spent, including on salaries. It is interesting to look at what AfME does for people with ME and compare it with what other organisations do who depend largely on volunteers. Knowing how money is spent helps those who wish to donate limited funds decide where their money would be most effectively used.

It looks like SC earns a comparable amount to David Tuller. I shall ponder carefully where I think my next donation would be better spent.
 
TiredSam said:
In the case of a charity there is an interest in how donations are being spent, including on salaries.
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I can understand that, but it doesn't seem appropriate to me to ask a particular (and junior) member of staff about their own salary. I think the issue of charity overheads is also fraught - those with low overheads may not be running themselves properly.

It is interesting to look at what AfME does for people with ME and compare it with what other organisations do who depend largely on volunteers. Knowing how money is spent helps those who wish to donate limited funds decide where their money would be most effectively used.

It looks like SC earns a comparable amount to David Tuller. I shall ponder carefully where I think my next donation would be better spent.
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All fair points, though!
 
Sasha said:
If I worked for a charity I wouldn't mind telling you whether it was a paid rather than voluntary position but I'd regard my salary as private information and I wouldn't tell you what it was.

Why do you ask the question, @large donner? How does it relate to the topic of this thread?
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To ascertain potential conflicts of interests in relation to who their main donors are and to understand why AfME are so bloody useless. There must be a reason why they are.

If AfME cannot publicly denounce Crawley, as one example, I want to know how much money is being wasted on paying salaries within the charity and also follow the money. Simple!
 
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TiredSam said:
In the case of a charity there is an interest in how donations are being spent, including on salaries. It is interesting to look at what AfME does for people with ME and compare it with what other organisations do who depend largely on volunteers. Knowing how money is spent helps those who wish to donate limited funds decide where their money would be most effectively used.
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Personally I still think it's off-topic: every member of AfME could be a volunteer and it wouldn't magically validate their approach to PACE. And it is their approach to GET and wider patient advocacy that would direct whether I donated or not, not whether they have paid staff.

(I'm not talking about ME/CFS charities here, but generally all-voluntary charities still run by their founders are often where some of the worst/most ineffective practices lie - you do, sometimes, get what you pay for).
 
large donner said:
To ascertain potential conflicts of interests in relation to who their main donors are
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@large donner, I agree it would be interesting to know if there are big donors who hold a certain view on PACE etc. but that conflict of interest would pertain whether Clare (or anybody) had a salary or not. Even if they were all volunteers, they might fear withdrawal of that funding if they hit out against PACE.

Clare is the head of communications, its clear she's just here to 'communicate' what she wants to
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The role of comms people is to communicate the views of the organisation, not themselves. For all we know, Clare is very uncomfortable with what she's obliged to say. After reading this thread, I would hope that she is, and would also hope that she's started a serious discussion within AfME about what can reasonably be expected of her. If AfME contains someone with foolish ideas, Clare should not be expected to be that person's spokesperson.
If she does get paid she is just mugging their members off and everyone else with ME too.
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The damage is happening whether Clare is getting paid or not. AfME are hurting us, regardless of the size of their salaries.

I want to know how much money is being wasted on paying salaries within the charity and also follow the money. Simple!
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I'm not interested in the salaries but it would be interesting to know where AfME's funding comes from, if not purely from individual donors. But these things aren't always about money. They can be about fixed ideas, and prestige, and influence, and so on.

Some person or persons within AfME appear to be a problem, whether because they've been influenced by the BPS model and don't have the training to see through the nonsense, or whether they're afraid to lose money from donors. Whatever it is, we need to know who the source of this is, and to engage with them or put pressure on them to let go of the reins.

I understand your frustration and anger, @large donner, but I'm not interested in shooting a messenger. I want to talk to the person constructing the message. I want them to stop hiding behind a junior employee and to face the patients they're hurting.
 
Londinium said:
Personally I still think it's off-topic: every member of AfME could be a volunteer and it wouldn't magically validate their approach to PACE. And it is their approach to GET and wider patient advocacy that would direct whether I donated or not, not whether they have paid staff.

(I'm not talking about ME/CFS charities here, but generally all-voluntary charities still run by their founders are often where some of the worst/most ineffective practices lie - you do, sometimes, get what you pay for).
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Fair enough but I AM talking about AfME and how much people get paid and who they are serving because they are bloody useless and all of us here do have an interest in ME and knowing why one of our charities is a waste of time and space, not just in the past but also right now as is seen from their selective responses to peoples obvious questions here. Charities have to stand up to scrutiny from the people they proclaim to be serving. AfME just do not stand up to scrutiny and to be honest talking about the charity sector as a whole is what could derail the debate instead of what I am doing and keeping it specific to why AfME is useless.
 
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@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.
 
@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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