In the most recent post in this series I encouraged ME/CFS patients to contact UK charities and ask them to write open letters to Queen Mary University of London (QMUL) calling on them to release anonymized data from the PACE trial. Despite QMUL’s absurd stance on sharing data from the PACE trial, they had stated that they were seeking “patient advice” on the matter so I was sure they would welcome contact from charities that are in direct contact with patients. Perhaps as a result they will finally realise their stance is causing harm to science and distress to patients. They should drop their appeal of the Information Commissioner’s decision that the data must be released.
The response from readers was incredible with lots of patients joining the effort. Results have been dramatic with eight UK charities taking action so far!
- ME Association: has written to QMUL in support of the FOI request which the university are appealing. A copy of that letter can be viewed on their website.
- 25% ME Group: have written a letter (Word doc) to QMUL asking them to arrange release of the PACE trial data following the requests of patients and academics. They also raise concerns about harms experienced by their members from the PACE therapies.
- Action for ME: published a statement that they strongly support the release of anonymised data from the PACE trial and will be writing a letter to QMUL that they will make public. Additionally, all future research funded by AfME will obligate researchers to share anonymised raw data.
- Hope 4 ME & Fibro NI: has written to QMUL in support of the other requests for the anonymized PACE trial data to be released. A copy of their letter on their Facebook page.
- Invest in ME: has written to the both the medical research council and the Lancet demanding that the data be released. Their statement and letters can be read on their website.
- Tymes Trust: has written to QMUL asking them to reconsider their decision to fight the Information Commissioner’s decision that the data be released. Particularly in light of the risks to children being asked to take part in the PACE-for-children study (MAGENTA). Read a copy of the letter on their Facebook page.
- Welsh Association of ME & CFS Support: has written to QMUL asking them to release the data and cooperate with a truly independant investigation, urging them not to delay and face up to the inevitable. Copy of letter on their website.
- ME Research UK: has written to QMUL recommending they release the anonymised data and highlighting PACE trial’s controversial history and the movement in science toward accessibility of data. Their statement can be read on their website.
Outside of the UK
The Dutch Citizen’s Initiative for ME are the first (I hope of many) organizations outside the UK to join the UK charities in speaking up for patients in their country by writing to QMUL (and the Lancet) calling on them to release the anonymized trial data and carry out an independent review of the findings. You can read their letter here on their Facebook.
The Irish ME Trust have written to QMUL calling on them to urgently reconsider their position and release the anonymous PACE trial data. You can read their open letter here (dropbox).
Two belgian organizations, ME-Gids.net and WUCB (Wake up call beweging) have come forward to demand release of the PACE data, writing to both QMUL and the Lancet, calling on them both to realize that they can no longer defend the indefensible. Read the letter on their website.
Phoenix Rising, a US-based non-profit with membership representing much of the world has written to QMUL: release the PACE trial data.
The European ME Alliance (EMEA), an organisation of a dozen national patient organisations and charities in thirteen European countries campaigning for better research into the disease have written to QMUL urging them to reverse their totally unacceptable position and release the anonymous PACE trial data. You can read their letter here.
Their website lists 12 organizations, but I think one or two may be missing from the website. Here are the ones listed and I will update this if anyone is able to inform me of any that are missing.
1. Belgium ME/CFS Association (Nieuwrode, Belgium)
2. Foreningen for Myalgisk Encefalomyelitis (Denmark)
3. The Finnish Association of CFS (Finland)
4. Fatigatio e.V. (Germany)
5. Het Alternatief (Holland)
6. Icelandic ME Association (Iceland)
7. The Irish ME Trust (Ireland)
8. Norges ME-forening (Norway)
9. Liga SFC (Spain)
10. Riksföreningen för ME-patienter (RME) (Sweden)
11. Verein ME/CFS Schweiz (Switzerland)
12. Invest in ME (UK)
Three more Dutch me/cfs organizations ME/CVS Vereniging, ME/CVS Stichting Nederland, Steungroep ME en Arbeidsongeschiktheid have written to QMUL to release the PACE trial data. You can read their joint letter here.
Emerge Australia have written to QMUL and you can read their letter here.
ME/CFS Australia (SA) have written to QMUL. Here is their letter.
That makes twenty-nine patient organizations so far, from fifteen (I think) different countries. It is a global issue so if you are impacted by PACE in your country then I encourage you to speak to your national patient representing organizations and ask them to join the action.
This is a massive blow to QMUL’s war on transparency and avoidance of scientific accountability. We know that QMUL had contacted selected charities in the hope of securing their support, but have been rejected. Instead, charities are sticking up for the patients, and standing up for better science. They are doing the right thing and they deserve credit for that. It’s a sign of progress. Don’t forget to thank them for listening to us.
The one UK charity who failed to stand up for patients, ignoring us for weeks before making a worrying interim statement, was the Association of Young People with ME. You can read by open letter to them here and I suggest patients in the UK contact them to make sure they understand what patients expect from them. They hold their board meeting in March at which point a final position will be reached.
A charity must be judged by its fruits; their actions not their name or friendly looking logo. If you are a supporter of AYME then unless they promptly resolve this situation you may wish to reassess whether AYME deserve that support. Consider if one of the charities listed above would represent your interests better. Although one charity may let us down, we won’t let one rotten apple spoil the barrel; bad fruit belongs in the bin. The many charities above listened to you, they acted in your interests and you made that happen by communicating with them. Now you get to enjoy the fruit of your labour. Enjoy the win, get a taste for more.
The success of this action has also attracted the interest of other non-profits outside the UK whose members are just as unequivocal that the PACE data must be released. I consider this action a success already in the UK, but I hope more organizations outside the UK step up for patients and join the action.
What this win demonstrates is that patients in the UK and all over the world can make a difference. We all know there are hundreds of thousands of us in the UK and millions across the world. It is time to start utilizing our numbers. When I first got sick in 2008 the community had big divisions, but worse than that, no one believed we could make our voices heard, even on topics where there was agreement. That situation has changed over the last year or so.
I have seen more and more patients join social media, understanding that it is a powerful platform where we can make our voices heard from our beds, from our small communities. The charities have become more effective, working on their wording, focusing tighter on the major issues, and putting patient interests above other loyalties. In addition there are new groups like the ME Action Network who help organize people to campaign more effectively.
No longer are good petitions signed by just a handful of patients. No longer do only two or three patients respond to a well conceived campaign to contact agencies or charities. Taking action, spending that limited energy we have on trusted campaigns now pays off because collectively our voices are too loud to ignore. It is the single most important advantage that we have as patients with this disease: there are so many of us that if we get organized, if we take part and believe we can make a difference, then we cannot be ignored.
If you took part in this action – contacting the charities, sharing and discussing the campaign on social media, or telling family and friends about it – then well done. If you didn’t, then that may be because you didn’t know if it would bring results. If so, I understand why. But things have changed, and this result is evidence of that. We can make a difference. If you take anything away from this win, let it be that: You can make a difference if you take action.
Small update regarding AYME: They have now tweeted (see below) asking patients to contact them about their stance on the PACE trial. The address they quote is the same one I used previously. Nevertheless, I would encourage patients to contact them as requested asking them to support patients by calling on QMUL to release the PACE trial data. You can find a template message in my previous blog post, or you can write your own.
main image: creative commons zero license, from Pexels