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Action for ME Tosses Sir Simon Overboard

jimells

Senior Member
Messages
2,009
Location
northern Maine
Action for M.E. strongly supports the release of anonymised data from the PACE trial.

https://www.actionforme.org.uk/news/sharing-research-data-board-of-trustees-states-our-position/

In a stunning about-face for an organization that has been closely tied to PACE since it was first proposed, Action for ME has now joined the chorus of calls for releasing the data. The organization will also now specifically require the release of data for all future research that it funds.

In addition, the Board has agreed that any future research will only be funded by Action for M.E. if the researchers agree to share, appropriately in an anonymised form, their raw data, in line with the protocol set by their academic institution.
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
They are also asking us to contact the university about releasing the data. I think we should follow their suggestion.

We understand that Queen Mary University London (QMUL) has stated its interest in hearing the views of people with M.E. and so we will be writing to them to outline the charity’s position.

We would encourage any individual with concerns regarding the release of PACE trial data to please contact QMUL for information. Individuals who require support with this can contact us should they wish to.
 

Kyla

ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ
Messages
721
Location
Canada
flyingpigs.jpg
 
Messages
13,774
They are also asking us to contact the university about releasing the data. I think we should follow their suggestion.

Is there a danger that QMUL would then present this as a campaign of harassment to the tribunal? I don't think QMUL are going to change their mind on this, so think contacting them is unlikely to do any good, and they could try to use it as an excuse for not releasing data: "Look at all these polite and reasonable e-mails we've received.... it's traumatising!"

I took it to mean that the were talking about the any PACE participants who might be concerned about anonymised data being released:

We would encourage any individual with concerns regarding the release of PACE trial data to please contact QMUL for information. Individuals who require support with this can contact us should they wish to.
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
Is there a danger that QMUL would then present this as a campaign of harassment to the tribunal? I don't think QMUL are going to change their mind on this,

Even if every patient and advocate in the world went completely silent, QMUL would claim "Vexation by Silent Treatment". Don't be intimidated. We need to do everything we can to raise the social costs of policies that harm patients. "Think of the Children" that Creepy Crawley will harm with her new "GET for Kids" study.

QMUL has essentially unlimited resources and we have only each other and our voices. I'm gonna scream and yell until I can't do it anymore.
 
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1,055
I think @jimells is right on this one, we have a duty to the children who are at risk from GET and from MAGENTA.
At risk of sounding schmaltzy we are a community of patients and they are our children.
They have no personal agency, they have desperate parents who think trusting in GET, CBT and LP will make their children better. We know how we feel when people disbelieve in ME, imagine being a powerless child - it just doesn't bear thinking about.
 
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13,774
Crawley, MAGENTA and SMILE are not based at QMUL. I don't think that screaming and yelling is likely to be the best use of people's time, and could be used against us. imo people should protest, argue and challenge in as calm, informed and thoughtful a way as in possible, although everyone is free to do whatever they think it best.
 
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1,055
I agree 100% that shouting and screaming would be a counter-productive tactic.
But aren't MAGENTA and SMILE follow on trials from PACE? If PACE is retracted or discredited then the rationale behind the follow on trials vanishes - as does funding.
 

Scarecrow

Revolting Peasant
Messages
1,904
Location
Scotland
@Mrs Sowester, SMILE was supposed to be a study using the Lightning Process (TM), so can't be directly compared to PACE.

Does anyone know if SMILE is still happening? It's gone very quiet. ?
 
Last edited:
Messages
1,055
I think when designing a trial the research team look at the conclusions of available research papers and suggestions for further areas for study - wasn't MAGENTA a follow on from PACE?
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
But aren't MAGENTA and SMILE follow on trials from PACE? If PACE is retracted or discredited then the rationale behind the follow on trials vanishes - as does funding.

Yes. We are discussing a small club. The various institutions and individuals all know each other and work together. QMUL, Oxford, and Kings College London are all involved in PACE.

http://www.ncbi.nlm.nih.gov/pubmed/26521770
Rehabilitative treatments for chronic fatigue syndrome: long-term follow-up from the PACE trial.
Sharpe M1, Goldsmith KA2, Johnson AL3, Chalder T4, Walker J5, White PD6.
Author information
  • 1Psychological Medicine Research, University of Oxford Department of Psychiatry, Oxford, UK. Electronic address: michael.sharpe@psych.ox.ac.uk.
  • 2Department of Biostatistics, Institute of Psychiatry, Psychology & Neuroscience, King's College London, London, UK.
  • 3Medical Research Council Clinical Trials Unit at UCL, London, UK.
  • 4Academic Department of Psychological Medicine, Institute of Psychiatry, Psychology & Neuroscience, King's College London, London, UK.
  • 5Psychological Medicine Research, University of Oxford Department of Psychiatry, Oxford, UK.
  • 6Centre for Psychiatry, Wolfson Institute of Preventive Medicine, Bart's and The London Medical School, Queen Mary University of London, London, UK.

We must push against all the cracks that develop.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Bear in mind that an 11,000-strong petition, largely from patients, asking for the data release will be going to the PACE authors and therefore QMUL. IMO there's no further need for patients to contact them - just IMO, though.
 

Scarecrow

Revolting Peasant
Messages
1,904
Location
Scotland
@jimells, MAGENTA (and SMILE if it's still happening) were / are being led by Esther Crawley in the Bath/Bristol area. I don't know how much formal collaboration there has been with the White / Sharpe / Chalder set. I wouldn't expect there to have been a great deal as Crawley is a paediatrician but I'm sure they exchange Christmas cards or something.
 

user9876

Senior Member
Messages
4,556
Bear in mind that an 11,000-strong petition, largely from patients, asking for the data release will be going to the PACE authors and therefore QMUL. IMO there's no further need for patients to contact them - just IMO, though.

I think it is important that it goes to the head of QMUL and their governance council. The institution as a whole are responsible for both the PACE trial (legally) and FoI requests. I see it as a failure of their governance that they have not asked the hard questions of White about protocol changes and have been spending QMUL's money on preventing the release of data that would better inform patients about treatments.
 

sarah darwins

Senior Member
Messages
2,508
Location
Cornwall, UK
@jimells, MAGENTA (and SMILE if it's still happening) were / are being led by Esther Crawley in the Bath/Bristol area. I don't know how much formal collaboration there has been with the White / Sharpe / Chalder set. I wouldn't expect there to have been a great deal as Crawley is a paediatrician but I'm sure they exchange Christmas cards or something.

I think a little more than that. A quick Google shows them both at meetings of the MRC CFS/ME Expert Group, eg. here in 2008: https://www.mrc.ac.uk/documents/pdf/cfsme-expert-group-minutes-1st-meeting/

edit: reading through that doc, it's weird that Crawley could listen to all that — pathogenic triggers, cytokine action, immune dysfunction, genetics — then come away thinking the Lightning Process was just what children need.