AYME refuses to call on QMUL to release PACE data

[Sasha]

New post by Clark Ellis with the bad news:

https://autodidactauthor.wordpress....ls-forbidden-fruit-ayme-make-final-statement/

 

[Denise]

Thanks @Sasha for posting this link.
I look forward to Clark Ellis' upcoming post.
Interesting that AYME's comments reference the same Cochrane review in Coyne's new post.

 

[Never Give Up]

Boo. Hisssss.

 

[Sasha]

Terrible decision, and reasons that don't tally with the facts.

The decision came from a board meeting but I can't tell from their site who is on their board. All I can see from their "about us" page is that their CEO is called Mary-Jane Willows.

http://www.ayme.org.uk/more-about-ayme

 

[Esther12]

Their statement doesn't make sense. It's like they're trying to just say what White/QMUL want them to, but have such a poor understanding of the issues that they can't even get that right.

ME Action has some on this: http://www.meaction.net/2016/03/06/ten-organisations-call-for-pace-data-release-ayme-refuses/

Maybe if they were willing to enter in to a discussion on this, they might learn something?

 

[Sasha]

Maybe if they were willing to enter in to a discussion on this, they might learn something?

I agree. Just because they say they won't say anything else doesn't mean that people should stop asking them questions because (a) they're clearly very confused about the issues and (b) as a charity, they have a responsibility to their members to inform themselves and base their actions on a sound understanding of the facts. They could hardly be further from having a sound understanding.

 

[Jonathan Edwards]

This seems very odd.

Firstly, I was under the impression that the Cochrane review was written by the same people who did the PACE trial, so it would seem to be releasing the data to themselves - hardly releasing to independent researchers.

And if it was not the same people then all the arguments given by QMUL against releasing the data would seem to be invalid - being too expensive, interfering with future studies, breaking confidence, threatening the reputation of the team.

I had not heard of any such release but one way or the other it would seem to be a clear argument for insisting on release to truly independent researchers - who are asking for the data.

I find it very hard to understand the motive for a decision like this from a charity.

 

[Riley]

What is AYME?

 

[AndyPR]

What is AYME?

The Association of Young People with ME, a UK based charity.

 

[worldbackwards]

The QMUL data has already been released to and reanalysed by the Cochrane Collaboration (perhaps the most rigorous of research teams), which came to the same conclusion as the original researchers. This release to a bona fide researcher who has an ethical duty of care for the data complies with a condition of MRC funding. For the same reasons, it remains open to other bona fide researchers to request the data, subject to the same ethical undertakings. Therefore there is no requirement for AYME to write to QMUL and we will not be doing so.

Eh? What utter waffle.

 

[JohnCB]

I find it very hard to understand the motive for a decision like this from a charity.

We haven't had anyone here to present the view of AYME. I don't know them but I thought I would try to think through what their viewpoint might be. OK, so really this is guesswork from me.

They are a small charity and money is very tight. Most years they run a deficit I think. A major source of income for them is corporate giving. They don't charge for membership as they represent children. So I think first of all they don't want to be involved in controversy.

Secondly one of their activities is crisis intervention. I guess this is negotiating when social services or mental health tries to take kids into psychiatric units or away from their parents. We've all heard the horror stories so I think this is important work and once again they want to be free of controversy and on good terms with pediatric ME/CFS services and doctors. They can't avoid dealing with these people, who hold the power.

Thirdly reading between the lines of their email, especially the last paragraph, I think they are saying "Go away, this is not the kind of thing we think about on the board. We campaign on different issues to the adult organisations." Maybe they would not have said anything one or the other if they had not been pressed.

Their email does not say the object to the release of the data and it does not say they object to us pursuing it, but they don't want us to draw them into this issue. I think that is what they are saying.

 

[worldbackwards]

We haven't had anyone here to present the view of AYME. I don't know them but I thought I would try to think through what their viewpoint might be. OK, so really this is guesswork from me.

They are a small charity and money is very tight. Most years they run a deficit I think. A major source of income for them is corporate giving. They don't charge for membership as they represent children. So I think first of all they don't want to be involved in controversy.

Secondly one of their activities is crisis intervention. I guess this is negotiating when social services or mental health tries to take kids into psychiatric units or away from their parents. We've all heard the horror stories so I think this is important work and once again they want to be free of controversy and on good terms with pediatric ME/CFS services and doctors. They can't avoid dealing with these people, who hold the power.

Thirdly reading between the lines of their email, especially the last paragraph, I think they are saying "Go away, this is not the kind of thing we think about on the board. We campaign on different issues to the adult organisations." Maybe they would not have said anything one or the other if they had not been pressed.

Their email does not say the object to the release of the data and it does not say they object to us pursuing it, but they don't want us to draw them into this issue. I think that is what they are saying.

Crucial to understanding their response is knowing that AYME are the only ME charity who clearly promote the use of CBT and GET. Mary-Jane Willows is all in favour. Esther Crawley is involved with the charity, which rather blunts any help they give to parents in trouble as they won't intervene in cases that involve her.

Ultimately there is a conflict of interest here: PACE validates their position, one that Mary Jane Willows helped to foist on ME patients at large as a member of the GDG for the NICE guidelines. Why would they want to put that at risk? And low and behold, they've failed to endorse some people who might do so. Colour me astonished.

 

[sarah darwins]

Terrible decision, and reasons that don't tally with the facts.

The decision came from a board meeting but I can't tell from their site who is on their board. All I can see from their "about us" page is that their CEO is called Mary-Jane Willows.

http://www.ayme.org.uk/more-about-ayme

You can see the list of members of the board of trustees (as of Dec 2014) in their financial statement for that year, here:

http://apps.charitycommission.gov.uk/Accounts/Ends59/0001082059_AC_20141231_E_C.pdf

In fact, more up-to-date list here: http://apps.charitycommission.gov.u...teredCharityNumber=1082059&SubsidiaryNumber=0

You can usually find stuff like this for non-profits through a search on the public record Charity Commission website: http://apps.charitycommission.gov.u...teredCharityNumber=1082059&SubsidiaryNumber=0

 

[Bob]

They are a small charity and money is very tight. Most years they run a deficit I think. A major source of income for them is corporate giving. They don't charge for membership as they represent children. So I think first of all they don't want to be involved in controversy.

They haven't avoided controversy: they've actively decided to create controversy by parroting the PACE authors and going against the interests of the patient population by arguing against transparency.

 

[Sasha]

This seems odd:

The 2013 figures have been restated to remove the income and expenditure handled by AYME on behalf of The British Association for Chronic Fatigue Syndrome/ME (BACME). BACME is an independent organisation, for professionals with an interest in CFS/ME, who retains legal control ofthe monies held in AYME's bank account. The bank figure shown in these accounts does not include those monies held for BACME.

http://apps.charitycommission.gov.uk/Accounts/Ends59/0001082059_AC_20141231_E_C.pdf

It sounds as though BACME doesn't have its own bank account and is sufficiently close to AYME to have AYME handle its money.

Here's BACME's statement on PACE (on its website):

http://www.bacme.info/aboutbacme/pace_trial.html

British Association for CFS/ME (BACME) Statement on the PACE Trial results

The National Institute for Health and Clinical Excellence (NICE) has previously recommended Graded Exercise Therapy (GET) and Cognitive Behaviour Therapy (CBT) as treatments for mild and moderate categories of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) on the basis of somewhat limited evidence in the form of numerically small clinical trials.

The PACE Trial represents the highest grade of clinical evidence – a large randomized clinical trial, carefully designed, rigorously conducted and scrupulously analysed and reported.

It provides convincing evidence that GET and CBT are safe and effective therapies and should be widely available for patients with CFS/ME as per the NICE guidelines (www.nice.org.uk).

Adaptive Pacing Therapy (APT) has not been shown to be effective as delivered within the PACE Trial, but this may differ from activity strategies promoted by CFS/ME services nationally.

This trial shows that approaches aimed at staying within limits imposed by the illness are less effective than those that test such limits.

In addition to these general benefits, research has shown that some people with CFS/ME can feel much better, and increase their activity levels, by gradually increasing the amount of exercise which they do.

A large research trial (The PACE Trial, White 2011) has shown that people with CFS/ME who had support from specialist therapists to gradually increase their exercise levels were more likely to report improvements in function and symptoms at the end of the year-long study.

BACME March 2011

 

[Sasha]

More on the AYME/BACME connection:

http://www.ayme.org.uk/news/-/asset...k/content/bacme-conference-summary-march-2015

The 6th BACME conference was held in Milton Keynes on 13th and 14th of March 2015.

There were approximately 140 delegates representing NHS and private specialist services from across the UK.

Conference was once again facilitated by the Association of Young People with ME (AYME) who are represented on the BACME Executive and are founder members.

The conference provided a mix of lectures on recent and upcoming research relevant to the area and workshops to help clinicians develop their practical skills.

Summary: Day One

Prof George Lewith presented data about the use of complementary and alternative medicine by patients with CFS/ME.

Associate Prof Jo Nijs presented the current thinking about the role of the central nervous system in CFS/ME, and discussed some of his team's research.

Dr Julius Bourke talked about his "the Brain in Pain Study", including the potential role of medication in managing pain in CFS/ME.

Prof Rona Moss-Morris presented research about executive control and attention in CFS/ME.

Dr Esther Crawley presented an update of research in paediatric CFS/ME.

Prof Trudie Chalder presented data about the mediators of treatment outcome in rehabilitative therapies.

 

[Snowdrop]

AYME trustees:

Dr Jill Moss
Mrs Vanessa Gwynn
Mr Colin Batten
Mr David Gillow
Mr Eric Mercer
Ms Laura Billingham
Mr Peter Barnes
Mr Mark Ellis
Ms Emma Foulkes
Ms Caroline Sunley
Mrs Nicole Sabina Dawson

http://apps.charitycommission.gov.u...steredCharityNumber=1082059&ReportType=COLOUR

Just edited list which does not match the list from link below but the date of the report for list above is March 2016

http://directory.uk-b2b-info.com/org/charity/1082059/association-of-young-people-with-me-limited/

I found this by looking up AYME by their charity registration number.

I believe in transparency and accountability.

Further Edit: just cross posted with scarecrow

 

[Scarecrow]

AYME trustees:

Dr Jill Moss
Mrs Lindsey Stimpson
Mr Colin Batten
Ms Christa Woodman
Ms Madeleine Mold
Mrs Liz Eastham
Mr Peter Barnes

That's an old board listing. The most up to date one appears to be on the Financial Report @sarah darwins linked to above. The report was signed off September 2015
http://apps.charitycommission.gov.uk/Accounts/Ends59/0001082059_AC_20141231_E_C.pdf

 

[Snowdrop]

Don't know why I didn't see @sarah darwins link to the info.
Need to learn to read through whole thread.
Let's pretend I wrote that 100x

 

[Scarecrow]

Don't know why I didn't see @sarah darwins link to the info.

There are just too many words in this place and most of them don't cooperate when you're trying to read them.