Tell our charities: QMUL must release PACE data

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I am very pleased to see the decision by AfME. Thanks to AfME for listening to patients, looking carefully at the issues raised and speaking up to improve the lives of patients.

I look forward to carefully reading their letter to QMUL once published and the additional statement they mention will follow regarding PACE and other related issues.

Well done to everyone who has contacted any of the charities about these issues. I believe we have had statements/letters from Invest in ME, The ME Association, 25% ME Group and Action for ME. I hope the remaining charities will catch up shortly. I intend to blog an update at the beginning of next week to clarify where we are at that stage.
 
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ME/CFS charities call for the release of the PACE Trial data

Worth quickly summarising where we are now:

1 MEA has written to QMUL and placed our letter in the public domain:

http://www.meassociation.org.uk/201...o-release-of-pace-trial-data-9-february-2016/

2 25% group has endorsed the MEA letter - but I'm not sure if they have written to QMUL

3 Jane Colby at Tymes Trust has told me that she supports the MEA letter and will be sending their own letter to QMUL

4 AfME are writing to QMUL but have not yet placed their letter in the public domain

5 Invest in ME are considering writing to QMUL and have written to the MRC (one of the funders of the PACE trial) and The Lancet (who published the first PACE trial paper)

6 AYME and MERUK - no statements so far that I am aware of

As QMUL is keen to receive input/advice from people with ME/CFS as to whether they should release the PACE trial data, I would suggest that local and regional ME/CFS groups should also consider writing to QMUL, or saying that they endorse the letter to QMUL from the MEA, or the one from AfME, or the one from Tymes Trust

Dr Charles Shepherd
Hon Medical Adviser, MEA
 
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Sasha

Fine, thank you
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Dr Shepherd, has there been any contact with US charities such as Solve ME/CFS? It would be good to get them on the bandwagon too.

As always, thanks for the work that you do.
The action is being organised by @ClarkEllis (though strongly supported by the ME Association, as well as others) - I think the focus is on UK organisations.

Worth noting that Solve was one of the 12 organisations wanting an independent re-analysis of PACE:

https://dl.dropboxusercontent.com/u/89158245/CDC-AHRQ Request PACE Nov 2015.pdf
 
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As far as asking ME/CFS charities overeas to write to QMUL regarding release of PACE trial dat I have not made any approach and I'm not aware of anyone else doing so

I'm open to persuasion but I'm not sure that letters from overseas ME/CFS charities are going to be useful here

Be interesting to see what Clark thinks…..
 

user9876

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As far as asking ME/CFS charities overeas to write to QMUL regarding release of PACE trial dat I have not made any approach and I'm not aware of anyone else doing so

I'm open to persuasion but I'm not sure that letters from overseas ME/CFS charities are going to be useful here

Be interesting to see what Clark thinks…..
I wonder if letters from overseas charities to those in authority within QMUL may be useful in that it would show those running QMUL who are responsible for governance, risk and brand that the eyes of the world are on them. I wonder if they think they can bluff their way through the issue within the UK but I wonder if letters from the US and other charities would demonstrated that their reputation is being damaged across the world.
 
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I agree with Charles I think; I am neutral on the idea of charities outside the UK showing their support. I am not against it, obviously, as PACE has influenced policy all over the world and as @user9876 points out it would further demonstrate how isolated QMUL are in their stance. But it's additional work and my feeling is that we've done enough already, an impressive response from the UK charities.
 

jimells

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I don't see any downside to having international organisations write if they were aware of the issues, but can see that having one person trying to organise this might be an extra chore.
I sent an email to Solve ME/CFS.

To: solvecfs@solvecfs.org
Subject: Free the Data! (PACE Trial)
Date: Feb 13, 2016 2:51 PM
Hello,

Thank you for your quick and forceful response to the recently released NIH Clinical Center study protocol. It definitely helps my morale to see your organization standing up to the NIH and demanding that they use proper methodology and criteria for researching our illness.

As you know, there are many patients who, being confined to the house, have little we can do besides paying very close attention to every detail affecting the research and political climate. Not much escapes our attention. Your organization's voice and connections, when added to our eyes and ears, are a powerful force.

I am writing today to ask you to add your voice to the chorus of calls for release of the PACE trial data. The ME Association has publicly posted their February 9 letter to Queen Mary University of London (1). Dr Shepherd's letter thoroughly explores the issues and could serve as the basis of your own letter.

The Wessely School acts as an immovable object. But together the patient, academic, and advocacy communities are an immovable force that is quickly building strength. Just yesterday (Feb 12) "Action for ME" issued a statement supporting release of the data (2). Not even a psychiatrist can muddle the meaning of their words: "Action for M.E. strongly supports the release of anonymised data from the PACE trial."

We're getting close, but we are not quite strong enough to shove the Wessely School out of the ME research arena. One more good push should do it. Please add your voice and reputation to the call to "FREE THE DATA" to make sure it happens.

Jim Ellsworth
Littleton, Maine


(1) http://www.meassociation.org.uk/201...o-release-of-pace-trial-data-9-february-2016/

(2) https://www.actionforme.org.uk/news/sharing-research-data-board-of-trustees-states-our-position/
(I tried to restraint myself, really, I did try)
 

Mark

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Since you mention US non-profits, if people would like PR to send a letter, do speak up...and then, ideally, get together and work on drafting it...

If the overall consensus is that this would be helpful, then we could either write to endorse one or all of the other letters, and/or write adding some further observations ourselves.

Personally I think this is not the time to be worrying if we are being too 'full on' by sending further similar letters from ME charities around the world. We now have basically a clean sweep from the UK charities now - on the record and all in agreement - that's a major and very significant achievement in my opinion and ClarkEllis did a wonderful thing by taking the lead on this. If we have the energy and capacity to organise an international extension of this letter-writing campaign, I don't think we should be shy or err on the side of caution on this one. If all the UK's ME/CFS charities are against QMUL on this, then the rest of the world's are too, for sure, and even more so; surely it can't be wrong to let them know that?

The legal situation appears clear cut to me, that there is no reason under existing FOI or Data Protection legislation to prevent the release of the anonymised trial data as requested - just as the ICO ruled - so I expect the tribunal to uphold this decision. I would be outraged if the data isn't freed in the end, but nothing would surprise me. I'm not sure whether patient testimony or NGO lobbying will be relevant to the key legal adjudication in this case, but I think it's still worthwhile to tell it to QMUL like it is. A nice long list of worldwide ME/CFS organisations supporting the release of the data would likely be a useful resource in any case, at some point in time and in some context - but whether the work involved in organising all this is worth it...well that can only be judged by the person or persons taking on the job...
 

jimells

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Zaher Nahle was one of the signatories on the open letter to the Lancet.
Maybe the most important outcome of the current advocacy efforts is that all these folks are now working together towards advancing the research and improving the political climate. I'm sure they are looking far past the current battle to free the data. Even if we lose this battle, there is now an "army" organizing itself to help us now and into the future.
 
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Thanks @Mark. I say go for it - PR in particular represents a lot of UK patients anyway, so PR does represent UK patients, as well as others. But if other non-profits outside the UK want to show their support too then why not keep the pressure up. QMUL look increasingly isolated in their stance, so perhaps it will make them realise it's time to acknowledge they are wrong and withdraw their appeal. PACE is influential across the globe, so the opinions of patients all over matter and should be heeded by QMUL. I hope one or two people are willing to draft the letter. Perhaps it would be possible to arrange for several non-profits to sign it together - though that's more work for somebody. If it becomes a thing I'd be willing to write a short update article for publication and we could publish it here on PR if you like.

Thanks @jimells for contacting Solve - I'm a fan of what I read recently from Zaher Nahle and if Solve wants to express the views of the patients they represent on this matter then that's a good thing.
 

Keela Too

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So letters seem to be going to:
  • QMUL (MEA sent to: Records and Information Compliance Manager with copy to Professor Simon Gaskell, Principal)
  • The Lancet (presumably Richard Horton) and
  • MRC - who should this be addressed to?
Does anyone have relevant email addresses for these easily to hand please.