- Messages
- 2,125
you don't see any of these images on AfMEs posts.videos from the brilliant @L.A. Cooper !!!
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 (FM), 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.
you don't see any of these images on AfMEs posts.videos from the brilliant @L.A. Cooper !!!
Again - AFME's modus operandi is the whitewash of the reality of ME.you don't see any of these images on AfMEs posts.
@Molly98 @AndyPR or any of the other 'vocal minority' on FB, any chance you can post the speech from
#MEAction at the #MillionsMissing protest in the UK?
http://limitedcapability.blogspot.co.uk/2017/05/millionsmissing-protest-london-120517.html?spref=tw
as I doubt very much if AfME followers will be aware that retraction of PACE is supported by the Majority, not the minority.
eta: you might also ask..........have they actually seen Esther Crawleys presentation as what she was saying with regards to research is the opposite of what AfME are now claiming to be a prerequisite for any research they support.
Molly Morriss IT is not a case of just MOVE ON from the PACE scandal. Too many have been harmed as a result of this and we all still face the outfall from PACE when ever we come in contact with medical professionals. It is still causing considerable harm to patientsand seriously misleading and misinforming practitioners. The PACE authors have the opportunity to end this now and allow the community to move on by retracting the paper and I would also add by apologizing for the harm caused, then we will all move on. It is not OK to tell people the have suffered great harm from something such as this to just move on, this is a grave injustice, it is harmful, the science is deeply flawed, first this must be recognised, then put right, then we can all move on. The PACE authors can do that no one else , but AFME being closely involved with authors and supports could have considerable influence here. They have chosen not to use it.
7 · 2 hrs
Hil Patten The PACE trial, that many of us consider fraudulent, is the main influence on the 'treatments' we are offered in the fatigue clinics. Such 'treatments' are harming patients, including children. Calling us a 'vocal minority' '(where's the proof we are a minority?) hysterical' 'angry' 'outraged' 'daft' and other names will not change this fact.
3 · 1 hr
Jackie Goold Glen Buchanan for info you can be on this facebook page without joining AFME and the same goes for MEA facebook page. As it happens I have -this year -paid membership to both. Anyone with ME should be able to express their opinions here without those opinions being stigmatised as hysteria
3 · 1 hr
Janet Comerford Glen Buchanan - I find nothing whatsoever "hysterical" in Hil Patten's measured, accurate and insightful statement...
3 · 1 hr
Brent Forman "Hysterical" and "vocal minority"....I highly doubt it. What dismissive and loaded terms use.
4 · 1 hr
Jackie Goold Brent Forman agree - whether its is a noun or an adjective hysteria is a pretty strong accusation
1 · 45 mins
Glen Buchanan Very well said Emily.
2 · 6 hrs
Donna Christie Thank goodness for a positive rational person. Thank you Emily Beardall we need more people like you. Muck raking, and belittling others is not a good platform for poisitive well being. I tery to think positive 24/7, because being positive does help me feel ... Well a little better. Doesn't stop what goes on, but I am more Mrs Cheerful than Mrs Grumpy. That's got to be a good thing surely.
3 · 5 hrs
Anna Marie What's rational about alleging that Action for ME was excluded from being asked to sign an open letter and suggesting there were ulterior motives? Emily if you're saying that people involved with the PACE trial are no longer at Action for ME then what's the problem for the charity making a simple public statement of apology for its role? Maybe they didn't anticipate what a disaster the PACE trial would turn out to be but members of the charity believed Action for ME when they said it would be comparing pacing with other treatments and that was a false promise because Adapative Pacing Therapy isn't the same as pacing yet Action for ME devised it for the trial. Maybe it was all a mistake? Then the charity should own it. That would be the decent thing to do by anyone's standards. The last thing they should do is make excuses about the personal circumstances of their staff when the vast majority of the charity's income (mostly from fellow patients or caregivers) goes on staff costs and a very generous salary for the charity's CEO.
9 · 3 hrs · Edited
Chris Oy Has AfME forgotten this promise they made about PACE?http://web.archive.org/.../www.afme.../news/pace-q&a.shtml
Donna Christie Thank goodness for a positive rational person. Thank you Emily Beardall we need more people like you. Muck raking, and belittling others is not a good platform for poisitive well being.
The Afme Regrettable Disappearing Information Statement,
or TARDIS for short.
How is it possible to get so many empty words into such a short statement?
He needs to take more responsibility for his posts and his use of language. He did not use words like hysterical and vocal minority, etc, by accident. I'm sorry, but there are all sorts of words one could use to address criticism, but he chose THOSE words. Loaded words and phrases in our community, used to defame us.
Chris Oy Has AfME forgotten this promise they made about PACE?http://web.archive.org/.../www.afme.../news/pace-q&a.shtml
..it just occurred to me that this might be part-and-parcel in taking advantage of brain-fogged people who confuse #MEAction and Action for ME.
Muck raking you say. Must be meaning this muck which has been removed from AFME website which we have to rake up!!
http://web.archive.org/web/20030804230351/www.afme.org.uk/news/pace-q&a.shtml
Had not seen this before.
"If despite every care, anyone were to be harmed they would be visited by specialists at home. The researchers are also compelled to report any adverse events to an independent Data Monitoring and Ethics committee, appointed by the MRC, who have the power to recommend that the trial be stopped immediately. "
This obviously didn't happen..(?)
they don't appear to have made any attempt to follow up people who dropped out or didn't respond to the long term follow up questionnaires
So they were in breach of that clause then. "The researchers are also compelled to report any adverse events"
eta: aren't there figures that say some reported it making their symptoms worse?
I cannot see the link to AFME and PACE by Chris Oy on their Facebook.