Tell our charities: QMUL must release PACE data

user9876

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Mrs Sowester

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Could someone (or even better several somebodies) write a stock of template emails that can be copied, pasted and adapted for people who want to lobby a charity, research group, newspaper, university or whatever but are too ill to write their own please?
I think we'd be doing a service to those feeling too foggy to write their own and we'd up the numbers of people expressing their dissatisfaction with the current state of play.
If the 11,000+ who signed the anti PACE petition were to send a polite email to lobby a group then it would be hard for that group to ignore...
 
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Congratulations on the outcome of your campaign, @ClarkEllis! Very impressive advocacy. :thumbsup::thumbsup::thumbsup:
Thank you Sasha, I'm very pleased with the outcome and impressed with how the community responded.

Only one fly in the ointment. I see that AYME have finally broken their silence but I'm not sure why they ignored my two emails (both to the address they give in their tweet) and my tweet to them a few days ago which I checked and haven't had a reply to, and this tweet is not enough, they will have to answer the questions and take appropriate action if they truly represent patients.

As they have asked for patients to get in contact via that address, I suggest people do that if they have not done so already.
 

Sasha

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There's a discussion going on on AYME's FB page about this, with some strong comments arguing as to why they should publicly support release of the PACE data:

https://www.facebook.com/AYME.UK/posts/693741414074415

Including this rather odd response from AYME:

AYME said:
We will support the outcome of the legal process relating to this action, and are taking steps to add the petition to our website, as soon as possible. The petition will sit in the members-only area of our site and will be available for our members to access as they wish and respond should they choose.

The matter will be further discussed at our next board of Trustees meeting, to be held in early March, and we will issue a further statement after this time.
I don't know what petition they're referring to.
 
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So I'm losing count now but we have EIGHT UK Charities (both WAMES and MERUK have joined up) that have written letters in support of patients calling for the PACE trial data to be released. https://autodidactauthor.wordpress....ls-forbidden-fruits-the-fruit-of-your-labour/

AYME are the only charity yet to make a final decision and I am hoping they join with everyone else. I sent them an open letter on why they must not sit on the fence: https://autodidactauthor.wordpress....ials-forbidden-fruits-an-open-letter-to-ayme/
They have a board meeting in March where this matter will be discussed.

If you know of any other charities, in the UK (smaller ones are welcome) or elsewhere (this is a global issue), that want to throw their support behind patients and call on QMUL to release the anonymized data then I'd be pleased of their support.
 
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That's great Mango, thanks for doing that.

Those in other countries, if the PACE therapies are the main treatments on offer where you are then that is down largely to the PACE trial so if you agree that transparency of that study is essential to assess if these therapies are safe and effective, then contact the charities in your country, tell them about this action and ask them to support it.
 

mango

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i just checked some of the nordic discussion groups, and saw your blog already shared in a few of them, clark.

i've been told that the norwegian, danish, finnish and islandic ME associations have all been notified (emailed the link) as well.

@ClarkEllis , let me know if you would like to have their email addresses, if you would like to contact them yourself.
 
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I'm glad that they are hearing about it, thanks for letting me know about that. I am more than happy to talk with them, answer any questions, etc. but I think it is best if the patients they represent are the ones to contact them about it and seek their support. That way their support, assuming they provide it, is valid and based on the patients they represent in their country.