Request to Action For ME to support David Tuller

[user9876]

My understanding is that there may be a discussion amongst (some of) the board members this week about a message of support in favour of Crawley

Would that mean supporting Crawley's accusations of libel in which case they may well be taking on a legal risk that they could also be libeling others with the accusation. Of course Crawley isn't doing herself any favours by staying quiet about what her exact accusations are.

Or would that support for Crawley's claims that opposition to her trials and PACE is anti-science. (and more generally attacks on patients).

Or support for Crawley's trial protocols which will lead to uninterpretable results as they only have subjective measures to measure an open label trial. I guess now they have absorbed AYME then they may feel they have to back this as AYME signed up to them. But this is just bad science and wasting government money.

Or support for her poor work where she declares everyone who is tired has ME.

Or support for her running trials where she doesn't get informed consent because she fails to warn of the potential side effects of GET/CBT.

Or support for her for failing to publish Smile results in a timely manner.

Or support for her in her dismissing concerns about PACE and claiming results stand.

Or support for her trying to duplicate the Biobank in her mega proposal.

Is there anything positive to support. Generally I've been shocked by the poor standard of her papers and surprised they get through peer review.

 

[AndyPR]

Yes I'm not against a letter showing Patient support for tuller I just don't think we can demand AFME do.

If they claim to represent/work for the benefit of ME patients in general then I disagree. Any organisation that claims to represent patients generally should be open to all patient views, as that is who they represent. They may claim to represent only their members but then that is not how they present themselves publicly. If they don't want to support David Tuller then they should be explaining publicly why that is.

 

[Barry53]

I agree that some of the wording in the petition is unfortunate.

However, I have signed it, as I agree with the sentiment.

It is high time AfME decided to be on the side of patients and science, not the BPS crowd. I have added a comment to the petition explaining why I have signed.

I suggest, even if you don't want to sign because of the wording, you could go in and up-vote comments you like, or add a comment of your own.

I wanted to add a constructive comment as you suggest Trish, but realise that it is impossible to comment unless you have actually signed ... which I find really unfortunate. Huge pity, because in principle I support the notion wholeheartedly. Unfortunately I really do feel that demand 3 does more harm than good, and invalidates the whole thing. Not for me to presume David Tuller's feelings, but I would not be surprised if he found that demand to be embarrassing, flying in the face as it does of what he fights for.

 

[Barry53]

Maybe it could have been better worded but it was done in a bit of a hurry. It is not meant to refer to anything other than the current discussion about this specific issue.

That clarification of the context is good thanks @JohntheJack, and I can see where you are coming from; in that context I can agree with you. Will ponder if I think I can sign, along with a clarifying comment.

 

[Esther12]

Signed.

I thought it was a good concise petition, just lacking in a summary for those not familiar with who these people are.

I've signed too, even though I think your point 3 is a bit over the top.

Looking back, I guess people could interpret that to mean 'any' discussion about anything to do with them, but in this context it seems pretty clear to me that it meant in any discussion about this issue.

It's good to put more pressure on AfME even if we're rightly cynical about them ever being anything but terrible.

I've had people telling me to give Sonya a chance to make changes, and that she really is working to improve things, for like five years now. To me, it seems that she just tells people what they want to hear, but isn't willing to fight to bring about any of the real change needed at AfME. Still, the more we can do to make the problems clear the better.

 

[Barry53]

Looking back, I guess people could interpret that to mean 'any' discussion about anything to do with them, but in this context it seems pretty clear to me that it meant in any discussion about this issue

I did completely misunderstand this, hence my posts:-

http://forums.phoenixrising.me/inde...in-by-d-tuller-et-al.50158/page-7#post-849015

http://forums.phoenixrising.me/inde...in-by-d-tuller-et-al.50158/page-7#post-849051

http://forums.phoenixrising.me/inde...in-by-d-tuller-et-al.50158/page-7#post-849053

 

[Esther12]

I did completely misunderstand this, hence my posts:-

http://forums.phoenixrising.me/inde...in-by-d-tuller-et-al.50158/page-7#post-849015

http://forums.phoenixrising.me/inde...in-by-d-tuller-et-al.50158/page-7#post-849051

http://forums.phoenixrising.me/inde...in-by-d-tuller-et-al.50158/page-7#post-849053

Too much going on in too many threads! Only saw them after posting here.

 

[ukxmrv]

Does Sonya understand the problem, I wonder. I gather from reading her biog. that her background is in charity administration, not in ME. Does she even understand the science at all, or does she see her role as simply to do the bidding of the BPS crowd? Surely someone paid a lot of money to run a large patient charity should educate themselves fully about the condition they are supporting. I can't understand where she is coming from on this at all.

She did say at one stage that she has Fibromyalgia .

I don't think it is a question of education. In my opinion I think she knows exactly what she is doing.

http://forums.phoenixrising.me/inde...-peter-spencer-as-ceo-of-action-for-me.18798/

 

[slysaint]

Does Sonya understand the problem, I wonder. I gather from reading her biog. that her background is in charity administration, not in ME. Does she even understand the science at all, or does she see her role as simply to do the bidding of the BPS crowd? Surely someone paid a lot of money to run a large patient charity should educate themselves fully about the condition they are supporting. I can't understand where she is coming from on this at all.

From Bath
"
During her time studying at Bath, Sonya gained a BSc Hons in Sociology and Social Work. She has since worked in senior management roles within the voluntary sector.

Sonya, 37, is currently working for leading children’s charity Barnardo’s where she is Head of Business Support for two days a week and National Lead on Family Strategic Partnership for the remaining three.

Born and bred in Bath, Somerset, where she lives with her husband and two sons aged nine and 14, Sonya was previously Assistant Director for Barnardo’s in the South West.

She said that while applying for a chief executive role was a logical next step in her career, her own personal experience of chronic illness had been a major factor in her applying for the role with Action for M.E.

Sonya said, “I suffer from Fibromyalgia which, while different from M.E., has given me an insight into the effects of a long term illness on people’s lives. While I am lucky enough to be able to manage my condition and work, I have experience of its debilitating effects and impact on day-to-day living."
http://www.bath.ac.uk/news/2012/07/04/action-for-me/

also:
http://blogs.bath.ac.uk/on-parade/tag/sonya-chowdhury/

Apparently ME Awareness was all AfMEs idea:

On Twitter:
Dr Paul Monaghan‏Verified account@_PaulMonaghan



I'm delighted to support Action for M.E.'s 2017 Awareness Week Campaign. M.E. is a debilitating illness that affects many people #MEmatters

eta:
http://www.cypnow.co.uk/cyp/news/10...or-off-the-record-bath-and-northeast-somerset
"What advice do you have for others wanting to do this kind of work?Never lose sight of why you are there. Always ask yourself what doesthis mean for children and young people and what would they say aboutit? And never use a lack of resources as an excuse."

 

[Demepivo]

Well done @JohntheJack . Thanks for taking the time to put this together.

Well done to @AndyPR too for writing various emails in the last couple of weeks to Sonya C. The pressure is beginning to build.

It is important patients let the charities know directly, even if they don't reply immediately.

Look out for developments in the next couple of days from Holgate & the other non AfME charities on the CMRC

 

[Wolfiness]

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

 

[Binkie4]

@AndyPR

Do you mind me asking if you been able to post on Afme's fb page recently ?

I have been unable to find the visitors' posts site for about a week now. They need more prods re the Psych Medicine letter but I cannot find the usual place for posting.

 

[AndyPR]

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

There is nothing obvious that I can see here http://beta.charitycommission.gov.uk/charity-details/?subid=0&regid=1036419 or http://apps.charitycommission.gov.uk/Accounts/Ends19/0001036419_AC_20160331_E_C.PDF

 

[AndyPR]

@AndyPR

Do you mind me asking if you been able to post on Afme's fb page recently ?

I have been unable to find the visitors' posts site for about a week now. They need more prods re the Psych Medicine letter but I cannot find the usual place for posting.

Yes, at the moment I have no problem posting to their page. I've checked both desktop/laptop view and mobile device view and both easily allow to post to their page. To see other peoples posts then you need to select "Posts" view.

 

[Binkie4]

@AndyPR

Thanks. Will take another look. Am on an iPad but will have a good look.

 

[Binkie4]

@AndyPR

Sorted. Thanks.

 

[trishrhymes]

250 signatures and lots of good comments. I hope AfME read and take notice, and don't dismiss this as 'harassment' by the great unwashed!

And pigs might fly.

 

[Demepivo]

The petition was delivered by John this morning.

If you want to email Afme directly (no promise they'll reply but they'll pick up how people feel))

Sonya Chowdhury CEO: Sonya@actionforME.org.uk
Clare Ogden (media and Sonya's #2) clare@actionforME.org.uk
Anna Whitson (Sonya's PA): anna@actionforme.org.uk

It's worth varying who you send the emails to. Clare & Anna won't like having to deal with grief caused by Sonya's indecisiveness.

 

[AndyPR]

Given the evidence of David Tuller's latest blog, http://forums.phoenixrising.me/inde...nti-science-brs2017.51066/page-29#post-849705, I doubt Sonya will be stepping off of the CMRC line.

 

[Demepivo]

@slysaint Some background for you on Sonya C & AfME

Sonya lives in Bath & has a son with ME. Now, who has a paediatric clinic for ME/CFS in Bath?

Many of the trustees came from Sonya's previous job at Barnardo's. they might be useful for fundraising but know absolutely nothing about the illness.

The Head of the Trustees is Jonah Grunsell, he's a professional lobbyist who worked with Sonya at Barnadro's. He came up with the crazy idea of employing somebody at the World Health Organisation as a permanent lobbyist. I don;t know if this plan is coming to fruition.

PS AfME spent £2000 on catering for around 30 people at the 2016 AGM.