Tell our charities: QMUL must release PACE data

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I used to campaign for Human Rights organisations and the message that always came out with campaign material was that International scrutiny and pressure is hugely important, especially when Human Rights are at issue such as Freedom of Information... I’m glad that patients and Charities outside the UK are taking an interest in this action and that some are already picking it up. QMUL have asked for patients’ views and we are a Global family. Thanks to all.
 

mango

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EMEA: PRESS RELEASE – For Immediate Release

The European ME Alliance (EMEA) has written to Queen Mary University London (QMUL) requesting that data from the PACE Trial is released for independent review.

The European ME Alliance is a collaboration of 14 ME organisations in 13 European countries who have the common aim of promoting biomedical research into Myalgic Encephalomyelitis (known as ME or ME/CFS) and increasing awareness of this debilitating neurological illness.

The refusal to release data goes against the current climate of openness and reflects poorly on any academic institution.

The failure to release this data also continues to do harm to patients across Europe where healthcare systems may base their policies on what is perceived by EMEA as quite flawed research.

The letter to QMUL is in the attachment above.
http://www.euro-me.org/Documents/Documents-EU/EMEA Letter PACE TRIAL QMUL 2016.pdf

Further Information:
  1. Invest in ME Letter to MRC and Lancet
http://www.euro-me.org/news-Q12016-002.htm
 

mango

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The members of the European ME Alliance are:

Belgium ME/CFS Association, Nieuwrode, Belgium
Foreningen for Myalgisk Encefalomyelitis, Denmark
Suomen CFS-Yhdistys/Finlands CFS-förbund, Finland
Fatigatio e.V., Germany
Het Alternatief, Holland
Icelandic ME Association, Iceland
Irish ME Trust, Ireland
Norges ME-forening, Norway
Liga SFC, Spain
Riksföreningen för ME-patienter (RME), Sweden
Verein ME/CFS Schweiz, Switzerland
Invest in ME, UK

Associate Members:
ME Foreningen, Denmark

http://www.euro-me.org/about.htm
 
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Wow, that's brilliant.
Thanks for tagging me Sasha and for the compliment. I am aware of some others drafting letters but I didn't get early wind of this one. It is so exciting to see it unfold along with everyone else.
So we have 23 (assuming I have not lost count) different organizations that have written (so far!) to QMUL over this issue. Who wants to take bets on how many more it will take before QMUL realise their stance is untenable? Patients literally all over the globe are demanding the data. Avoiding transparency is no longer an option.

Big thank you to everyone who has got on-board, especially those who have told people about this, contacted their national organizations and drafted the letters. What a great achievement for our community.
 

Comet

I'm Not Imaginary
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Wow, that's brilliant.
Thanks for tagging me Sasha and for the compliment. I am aware of some others drafting letters but I didn't get early wind of this one. It is so exciting to see it unfold along with everyone else.
So we have 23 (assuming I have not lost count) different organizations that have written (so far!) to QMUL over this issue. Who wants to take bets on how many more it will take before QMUL realise their stance is untenable? Patients literally all over the globe are demanding the data. Avoiding transparency is no longer an option.

Big thank you to everyone who has got on-board, especially those who have told people about this, contacted their national organizations and drafted the letters. What a great achievement for our community.
:star::balloons: What an amazing thing you have done! Thank you! :balloons::star: It's so obvious that slackers like you are suffering from a self-imposed disease. :rolleyes:
 
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Not-for-profit Emerge Australia have written to QMUL 20.3.16 calling for release of PACE trial data and independent analysis of data. Their letter also provides QMUL with details of their preliminary research with Federation University Australia, which 'suggest very different findings' and they have copied their letter to the Information Commissioner's Office.They say they will distribute this letter in an e-newsletter throughout their networks in the next few weeks.
 

Sasha

Fine, thank you
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Not-for-profit Emerge Australia have written to QMUL 20.3.16 calling for release of PACE trial data and independent analysis of data. Their letter also provides QMUL with details of their preliminary research with Federation University Australia, which 'suggest very different findings' and they have copied their letter to the Information Commissioner's Office.They say they will distribute this letter in an e-newsletter throughout their networks in the next few weeks.
@ClarkEllis :)
 
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Emerge Australia have said that they are happy for their letter to QMUL to be circulated earlier than their e-newsletter to demonstrate their support. They say the more visability the better. Here is the text of their letter:

Emerge Australia letter to QMUL:

Professor Simon Gaskell
President and Principal Queen Mary’s University London
Mile End Road London E1 4NS
United Kingdom

20th March 2016

Call for release of PACE trial data and independent analysis of data

Dear Professor Gaskell,

Emerge Australia is a not-for-profit organisation that supports people with ME/CFS and associated conditions. We are writing as an organisation representing and supporting Australians with ME/CFS, to express our concern about Queen Mary University of London’s (QMUL) refusal to comply with the UK Information Commissioner's order to release the PACE trial anonymised raw data.

As QMUL is seeking the “advice of patients" on the matter, we are writing to convey our view to you. We support the request of an 11,000-signature petition hosted by the ME patient-advocacy organisation, ME Action Network, which asked “the study authors… to give independent researchers full access to the raw data”.1

Currently, much of the information available to Australian medical practitioners is based on the PACE trial, (in particular, the Royal Australian College of General Practitioners' website). However, eminent scientists have identified serious flaws in the PACE trial data analyses, putting the authors’ claims of patient recovery in serious doubt .2

Contrary to the PACE trial authors' claims, GET can be extremely harmful to people with ME/CFS. In 2015, Federation University Australia undertook an extensive research study into the health and wellbeing of Australian’s with ME/CFS. Preliminary findings of the survey (unpub.) show that 90% of the 608 respondents said that increasing their level of exercise/activity makes them feel worse. In the UK's ME Association's 2012 patient survey, 74% of the 233 people who tried GET report that their condition worsened.3 This anecdotal evidence is supported by studies reporting abnormal physiological responses to exercise in people with ME/CFS.4

PACE-style GET and CBT are based on the underlying rationale that ME/CFS is the result of activity avoidance and deconditioning. This view is at odds with the Institute of Medicine's (IOM) determination that "ME/CFS is a serious, chronic, complex and multisystem disease that frequently and dramatically limits the activities of affected patients".5 It is also at odds with the findings of eminent Australian researchers on the bio-medical basis of ME/CFS (Staines, Marshall- Gradnisik).6

Given these concerns with the trial, and in the interest of open and transparent science, we request that QMUL to comply with the Information Commissioner’s request to release the PACE trial data to independent researchers for reanalysis.

Yours sincerely,

Sally Missing President
cc: Rachael Cragg Group Manager Information Commissioner's Office Wycliffe House Water Lane Wilmslow Cheshire SK9 5AF United Kingdom
ENDS
 
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And another from another patient group in Australia (it appears to use the same text as the letter from Emerge above)

http://sacfs.asn.au/news/2016/04/04...a_inc_to_the_queen_mary_university_london.htm
It is the same text. There was a group of 4 pwME/CFS who organised to write to all the Australian ME/CFS state societies, and we included a template letter (in soft copy, that they could tweak to suit) that we also wrote for them to use, to reduce the work involved in them sending a letter to QMUL. We were very aware that many of our state societies are very small, and run by patient volunteers. We were also very aware that they generally focus on patient support, not advocacy, so asking them to do this was adding to their already overflowing work. We used to have a national body in Australia, that took on more of an advocacy role, but unfortunately it is no longer functioning, which meant that our only option for an organised voice was the state societies. We are very appreciative of the societies who have written to QMUL.