Request to Action For ME to support David Tuller

[Demepivo]

@AndyPR I understand the MEA (& maybe MERUK) have a different statement ready...give it a day or so to get it out

 

[JohntheJack]

Is it true AfME are funded by the Department of Health? So they will never side against the establishment.

No, I don't believe it is. I was looking at their accounts recently an couldn't see anything from the DoH.

A big chunk of the income is from subs.

 

[JohntheJack]

I sent an email to Sonya last week. She replied that someone had signed up members of staff of AfME to the petition and so she was going to ignore it. I responded, but she ignored me and has not replied further.

The exchange is here. https://justpaste.it/171kg

 

[Yogi]

No, I don't believe it is. I was looking at their accounts recently an couldn't see anything from the DoH.

A big chunk of the income is from subs.

Years ago they were funded by DOH.

 

[Yogi]

I sent an email to Sonya last week. She replied that someone had signed up members of staff of AfME to the petition and so she was going to ignore it. I responded, but she ignored me and has not replied further.

The exchange is here. https://justpaste.it/171kg

This is disgraceful and shameful of AFME. This is what leads to anger and mistrust.

AFME are in a powerful position in this scenario and claim to represent pwME in front of all policymakers but they have no remit to do so.

What can we do?

 

[Esther12]

someone had signed up members of staff of AfME to the petition

That's a pretty annoying thing for someone to do.

Doesn't surprise me Sonya is trying to avoid discussion or debate on these things though - their position is just indefensible.

 

[Yogi]

@JohntheJack Thanks for your effort in arranging this.

How many false signatures were they? Given she has used the reason of false signatures as a get out of clause for not responding at all to your reasonable request , I am concerned AFME could be just using this as an excuse. How can we trust that they did not do this to be able to use as an excuse. I would not put it past them.

 

[JohntheJack]

@JohntheJack Thanks for your effort in arranging this.

How many false signatures were they? Given she has used the reason of false signatures as a get out of clause for not responding at all to your reasonable request , I am concerned AFME could be just using this as an excuse. How can we trust that they did not do this to be able to use as an excuse. I would not put it past them.

I don't know. There were 294 listed. Someone said the vote doesn't count unless the email is verified. Even if that's not true, there were likely 290 real signatures.

 

[Yogi]

I don't know. There were 294 listed. Someone said the vote doesn't count unless the email is verified. Even if that's not true, there were likely 290 real signatures.

On what basis is she making that allegation then??

 

[Ysabelle-S]

John's emails were reasonable, the curt reply and lack of further engagement was not. I don't think things are going to change at this charity. I've never been a member or given a penny to them, but those who are still members might want to reflect on the continued inability to stand up to vested interests. I don't know why MER UK pulled out the CMRC - so far it seems to be a lot of supposition - but perhaps patients still engaged with AFME need to pull out from that organisation. I know newer patients are particularly vulnerable to being taken in, but I don't think this organisation is going to change in a direction that is in the best interests of the patients.

 

[JohntheJack]

On what basis is she making that allegation then??

The members of staff at AfME, I presume, received an email asking them to verify their vote.

 

[Yogi]

John's emails were reasonable, the curt reply and lack of further engagement was not. I don't think things are going to change at this charity. I've never been a member or given a penny to them, but those who are still members might want to reflect on the continued inability to stand up to vested interests. I don't know why MER UK pulled out the CMRC - so far it seems to be a lot of supposition - but perhaps patients still engaged with AFME need to pull out from that organisation. I know newer patients are particularly vulnerable to being taken in, but I don't think this organisation is going to change in a direction that is in the best interests of the patients.

Apart from the fact her child now has ME and therefore they now have the same interests as everyone with ME. How could AFME and SC not be "in the best interests of patients" from now on. Our interests are fully aligned and nothing to worry about now.

 

[Chrisb]

Apart from the fact her child now has ME and therefore they now have the same interests as everyone with ME. How could AFME and SC not be "in the best interests of patients" from now on. Our interests are fully aligned and nothing to worry about now.

I am not sure about the logic of this. The child has apparently had ME for some time which would suggest that interests should have coincided over a similar period. There has been no obvious indication of this.

 

[Yogi]

I am not sure about the logic of this. The child has apparently had ME for some time which would suggest that interests should have coincided over a similar period. There has been no obvious indication of this.

I was being sarcastic. Exactly, that is my point.

You may not have seen this thread in the members only section.

http://forums.phoenixrising.me/inde...e-huffington-post-about-son-having-m-e.51645/

 

[JohntheJack]

I have now received an email from Sonya and responded to that one. The exchange is at the same link, scroll down to see the bottom two emails for the update.

https://justpaste.it/171kg

 

[Esther12]

How does Sonya make everything she writes so infuriating?

I am not prepared to make comments about the alleged conduct of an individual at an event at which neither I nor any member of Action for M.E. was present. We did not have any input into the content of the presentation and, given that she has no formal role within the charity, do not speak for Esther.

Why was she prepared to comment on the MUPP(ets) thing, but not this? If she wants more information, why not ask Crawley about it?

We are very clear about the extent of our relationship with her: we fund a severe paediatric M.E. surveillance study on which she is the principal investigator, and we work alongside her as part of the M.E./CFS Epidemiology and Genomics Alliance.

Does that mean that they have no other contact with her outside of that? That doesn't sound plausible to me, but if they mean "we are very clear about the extent of our relationship with her: it includes x + y plus some other stuff I won't mention here" then that's not very clear.

I can honestly say that for everyone who asks us to shout louder about PACE, there is another begging us to not get distracted.

Who wants you to just 'shout louder'? Is that really how she interpret's patient concerns? - as if we just want her to make more noise?

How would signing the open letter be more of a distraction from other things than not signing the open letter? 13,000 people signed the patient petition calling for the retraction of misleading PACE claims... how many are asking that Action for ME not speak out against these misleading claims?

I’m not able to devote any more time to answering questions I’ve already addressed.

She always just comes out with this evasive guff that fails to address any real concerns. It's the same tactic taken by PACE: "I've already responded to this." Yes, and we've taken the time to explain to you how deeply flawed your response is - you now need to new response, or to recognise the problems with your position, in order to move the discussion on.

 

[Demepivo]

@JohntheJack thanks once again for your work

@Esther12 Standard Sonya C AfME nonsense. She aims to bore you into submission. Correspondence must normally

• be excessively long winded
• contain an excuse about not replying sooner due to staying in hotels in London & attending charity dinners
• not answer any of your questions
• Say she will not do anything more
• Sit on the fence
• The people begging AfME not to say anything about PACE are Queen EC and a couple of AfME volunteers with major mental health problems with experience of CBT

 

[JohntheJack]

Another brief reply from Sonya this morning. I think that may be the end of it, at least for now.
https://justpaste.it/171kg

 

[Esther12]

Hi John – I can confirm that with the CMRC, I always represent the range of views presented to the charity whether I agree, disagree or have no view. I also always make it clear where a view I am putting forward is my own.

Thanks

Sonya Chowdhury, Chief Executive, Action for M.E.

Have we ever actually heard Sonya express her own view on PACE or Crawley? She always seems to avoid taking any position.

 

[Jo Best]

Thanks for all your efforts @JohntheJack. I can't believe I was so naive as to hope that the employment of a smiley new CEO was a sign that Action for ME was casting off its old BPS coat after publication of the main PACE trial paper in 2011 and noting via Invest in ME Research the real progress being made in biomedical research in UK and abroad.

It seems obvious that unless there is an about turn by the AfME Board of Trustees (looking extremely unlikely) then we are definitely in for more of the same over the foreseeable future. It is so disgraceful to exploit and manipulate people with untreated neurological disease through charities that purport to represent their interests.