PACE Trial’s Forbidden Fruit, Part 3: Charities Must Echo Patient Calls For Data Release

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I recently wrote about the Freedom of Information (FOI) request that the Information Commissioner upheld, ordering Queen Mary University of London (QMUL) to release the data requested from the PACE trial. I provided an example of exactly what data was requested to demonstrate that the release would not include any personal identifiers of patients from the trial. I also highlighted the scaremongering of the PACE authors and their institutions that is misleading people into thinking the data is personal data when it is not. Before that, I wrote about why we must be allowed to see the data.

QMUL released a statement about the case, stating that they were seeking advice of patients, but they have not explained how this advice is going to be sought or under what conditions.

Many ME/CFS patients will obviously want to have their opinions taken into account. It is clearly a matter that patients feel strongly about. A recent petition concerning the PACE trial, signed by over 11,000 people (mostly, it is reasonable to assume, patients) included a call for:

“the study authors… to give independent researchers full access to the raw data (anonymised by removing trial identifiers and all other data superfluous to the calculation, such as age, sex or location)”

My suspicion is that QMUL and the PACE authors will seek the support of ME/CFS charities who have supported them in the past. But our charities should neither support the withholding of the data nor passively wait to be contacted: they should be all over this issue. Patients rightly expect the charities to speak up on their behalf, to earn the donations and membership fees we give them. The charities must ensure that the PACE authors can’t just cherry-pick the advice from patients that suits them.

Previously, some of the charities have done a good job of challenging the flaws in the PACE trial and others have fallen short. Some past statements suggest that some ME/CFS charities may not understand the problems with the trial. However, this is too important for the charities to fail to inform themselves of all the facts. There is now plenty of well written information about the problems with PACE. Whereas patients may be too sick to do the necessary reading and thinking, our charities have a duty to study the facts. They must not allow themselves to be be misled by the PACE authors or sit on the fence through ignorance; either will be unacceptable to patients, who will not forgive such a failure on this key topic. Charities representing patients, particularly, but not exclusively in the UK, can have an important impact and I am calling on them to stand up for patients on this crucial issue.

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I encourage readers to contact ME/CFS charities and ask them to contact QMUL to tell them that patients want the data released. Crucially, not just the charities that have been supportive of patients already but also those that some may feel have let them down on this issue before. Judge each charity by its subsequent actions. Below are the contact details of a list of the larger UK charities which you may wish to contact.

I will be writing to ME/CFS charities who represent UK patients in two week’s time to ask what their official stance is, and what they are doing about it. I hope that they will publish their letters to QMUL on their own websites so that I can link to it. If you also want to post a copy of your email/letter/the gist of your phone-call, then feel free to do that here – I think it would be good to have the views of patients on the public record.

Here is what I will be sending to each of the below charities. Feel free to copy the text – adapting it if you like – to save yourself some time.

I believe this is really important. We have limited energy, but if we don’t spend it to do this then QMUL will find it easier to present a one-sided view of what patients want that will not represent us well.

My email:

I am writing, as an ME/CFS patient/member of your charity, to express my concern about the PACE trial and Queen Mary University of London’s (QMUL’s) actions to deny release of trial data that the Information Commissioner has ordered them to release. I understand that QMUL are seeking the “advice of patients” which I assume may include contacting you for a statement or evidence of what patients’ advice on the matter is. Even if they do not contact you I think you should contact them so that patients’ views are accurately conveyed.

Patients’ views have been expressed in an 11,000-signature petition hosted by the ME patient-advocacy organisation #MEAction, which included a call for “the study authors… to give independent researchers full access to the raw data (anonymised by removing trial identifiers and all other data superfluous to the calculation, such as age, sex or location)”.

I believe that it is crucial that our UK ME/CFS charities stand up for patients and for transparency in the science that affects our lives: patients expect no less of our charities at this crucial time. The Information Commissioner has already concluded in his ruling that the data release poses no risk to trial patients being identified.

In common with the petition signatories, my view is that the PACE trial was flawed and the de-identified data must be released to the public at once. I believe QMUL should drop their appeal before the tribunal hearing and comply with the Information Commissioner’s decision. I hope that you will contact QMUL and express to them that this is a widely held view among patients, and one that you support.

I hope that you will post any letter that you send to QMUL on your website. I have written a blog post on this topic and will link to any public statements that you make on this issue.

Sincerely,

Contact details for the larger UK ME/CFS charities:

The charities are listed in alphabetical order. While some informed themselves early about the problems with PACE and have, to their great credit, actively campaigned to protect patients from the misinformation that surrounds it, others have not. The latter charities in particular now need to realise that they must act in a way that reflects reality and patients’ needs before they lose their reputations for good: and all charities now need to come together and speak with one voice. Please write and tell them!

Action for ME
AYME
Invest in ME
ME Association
ME Research UK
Tymes Trust

25% ME Group (added to list 09 Feb 2016)

 

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22 thoughts on “PACE Trial’s Forbidden Fruit, Part 3: Charities Must Echo Patient Calls For Data Release

  1. I suspect they mean to ask the patients who actually took part in the trial. It is unclear what kinds of pressures may be at play upon trial participants, but I suspect they may have some pressure to respond as desired.

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    • You may be right, the obvious issue with that of course is that they have already biased the view of any patient who took part in the trial by their scaremongering on the internet. If you were a patient in the trial, no doubt you would be understandably worried because QMUL have told you you have something to be worried about. It’s not true, but the patient may not know that. I can only hope that such patients look at the facts and don’t believe QMUL’s scaremongering. ME/CFS Charities obviously have an obligation to ensure these patients, and all other patients, get accurate information that is not influenced by QMUL who have a clear conflict of interest.

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  2. I wonder if this may also be an interesting test of the of the UK CFS/ME Research Collaborative (CMRC) Charter, as only two of the charities listed (Invest in ME and Tymes Trust) are currently independent of the CMRC, and have been clear in their published views of the PACE trial.

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  3. This is a excellent campaign. I have sent a slightly modified version of your email text to all the suggested ME charities. I hope many others will do the same, this is really important. Thanks!

    Liked by 1 person

  4. Reblogged this on Laura's pen and commented:
    This may or may not make a difference to upholding the decision that data from the PACE trial should be released, but it’s worth a go. And, it would be good to try and get the charities on side with this anyway/ get a clear understanding of their position.

    There is a letter at the bottom of the blog you can copy and send to the charities listed.

    Liked by 1 person

  5. Hi Clark, you mention that “QMUL released a statement about the case, stating that they were seeking advice of patients”, could you please provide a link to this statement? Thanks again for your work!

    Liked by 1 person

  6. Thank you Clark for organising this – it galvanised me into contacting AfME, whose recent fence-sitting on this matter was enraging me so much that I did not renew my membership this year (a member for more than 25 years). Today, at last, I see they have taken their hands off their ears and uncovered their eyes, and joined the call for PACE data release. Given the obvious haemorrhaging support of members, as witnessed on their Facebook page, I guess they had little choice. I’m obviously delighted they saw sense, but it really sticks in my throat that it took them so bloody long.
    Thank you for your blogging, and take care of yourself.

    Liked by 1 person

    • Thanks, I’m pleased with the responses and it just goes to show that patients can make their voices count. I’ll have to write something on that. Patients made this happen, and we can make more change happen too. Charities must earn support from their members. If they do a good job ppl will support them if they do bad job ppl will leave them and give their money elsewhere. I hope we are seeing signs of genuine change that will unite the community and bring about high quality research that helps patients rather than harms.

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