• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

PACE media coverage - golden opportunity!

S

Sasha

Fine, thank you
Messages
17,863
Location
UK
The media coverage of the latest nonsense from the PACE trial authors means that the PACE trial is in the news.

This is just in time to broadcast the new #MEAction petition to force the The Lancet and Psychological Medicine to retract their misleading claims of patients recovering during the trial, and to force the authors to publish the real results according to the originally planned recovery analyses, not the silly ones that replaced them.

So! Please use the comments sections to post messages about the petition:

http://my.meaction.net/petitions/pace-trial-needs-review-now

It's not just a petition - though at this rate it's going to be news in and of itself - but it has background pages that explain simply and briefly exactly what went on with these misleading claims.

It's dynamite, so let's get the story out!

The petition is going gangbusters at over 1,800 signatures in the 13 hours since it was launched.

Please spread the word any way you can.
 
Scarecrow

Scarecrow

Revolting Peasant
Messages
1,904
Location
Scotland
I was going to post on the AfME forum but their site is down. Is there anyone of Fb that can add a comment there? And to MEA?

http://www.actionforme.org.uk/

26 October 2015

Action for M.E.'s website is currently unavailable, which is why you are seeing this holding page.

We sincerely apologise for any inconvenience. This has happened because our website provider has gone into liquidation, and we are working to re-instate our website as quickly as possible.
If you need to contact us for information, support or signposting about living with M.E., please call us on 0117 927 9551 or email admin@actionforme.org.uk (Mon to Fri 9am to 5pm). We can email you copies of our booklets and factsheets, or send out copies by post.
If you are seeking welfare benefits advice, please call us on Freephone 0800 138 6544 (Mon and Thu 10-12.30pm and 2-4pm, Tue 10-12.30pm and Wed 2-4pm).

You can also find us on Facebook (www.facebook.com/actionforme) and Twitter (@actionforme).
Click to expand...
 
mango

mango

Senior Member
Messages
905
Sasha said:
Great idea - I'm not on FB either. Can anyone do this?
Click to expand...

i'm on FB but don't have enough brain today to write something. i'd be happy to post your comment under my name, though, if you have something i could copy?
 
S

Sasha

Fine, thank you
Messages
17,863
Location
UK
Thanks, @mango! How about this:

Jen Brea's massively well-networked advocacy platform #MEAction launced a petition yesterday calling on The Lancet and Psychological Medicine to retract misleading claims that a substantial proportion of patients recovered in the PACE trial.

The petition also calls for publication of the recovery analyses promised in the trial's protocol but that were replaced by bizarrely weak recovery criteria. Patients were considered to have recovered in terms of physical function if they were still as disabled as patient with congestive heart failure.

The petition has had over 3,400 signatures in less than 24 hours.

Sign the petition and spread the word!

http://my.meaction.net/petitions/pace-trial-needs-review-now​
 
S

Sasha

Fine, thank you
Messages
17,863
Location
UK
mango said:
no worries :) don't hesitate to ask again if you want something posted on FB some other time. i'm more than happy to help boost the volume on your messages..! you're doing an amazing job, and i really admire your way of writing/expressing these things, always so well-tailored and clear! i have soo much to learn from you :)
Click to expand...

Thank you! Very kind! :)
 
You must log in or register to reply here.