AfME Board of Trustees statement on CBT, GET and PACE - 16th May 2017
- Thread starter AndyPR
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For those not aware:
http://measussex.org.uk/about-us/
Colin Barton is Chair of Sussex & Kent ME/CFS Society.
"The Sussex & Kent ME/CFS Society is a constituted registered charity (1082681) that works with the national patient organisations Action for ME and Association for Young People with ME..."
"Group officers have working relations and easy access to the Group’s advisors Dr Alan Stewart, Dr Esther Crawley, Dr Alastair Miller, Dr Gabrielle Murphy and Prof Leslie Findley."
More on Colin Barton and the Sussex & Kent ME/CFS Society:
http://forums.phoenixrising.me/inde...-in-newcastle-13th-14th-october.36515/page-34
http://measussex.org.uk/about-us/
Colin Barton is Chair of Sussex & Kent ME/CFS Society.
"The Sussex & Kent ME/CFS Society is a constituted registered charity (1082681) that works with the national patient organisations Action for ME and Association for Young People with ME..."
"Group officers have working relations and easy access to the Group’s advisors Dr Alan Stewart, Dr Esther Crawley, Dr Alastair Miller, Dr Gabrielle Murphy and Prof Leslie Findley."
More on Colin Barton and the Sussex & Kent ME/CFS Society:
http://forums.phoenixrising.me/inde...-in-newcastle-13th-14th-october.36515/page-34
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
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
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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
http://web.archive.org/web/20030804230351/www.afme.org.uk/news/pace-q&a.shtml
I suppose you could simply counter his posts about vocal minority by pointing out the fact that the only minority is the one that still hasn't equivocally given PACE the middle finger. I mean all charities signed but one. You could do the same with regards to researchers, there are more than 100 that signed the letter and only a vocal minority that keeps claiming CBT/GET is helping people.
Chris Oy Has AfME forgotten this promise they made about PACE?http://web.archive.org/.../www.afme.../news/pace-q&a.shtml
Looks like AFME do not want their members to see the 2003 archive of AFME and PACE link which they have removed very quickly.
They have some really ignorant and brainwashed supporters such as our friend Glen Buchanan. Can't blame some AFME supporters given that they have whitewashed the whole history of AFME being involved with the BPS school and the PACE researchers from their supporters.
Therefore make sure this is publicised!
Or the old Yahoo MEActionUK group which still has a useful web presence : http://www.meactionuk.org.uk/
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
http://web.archive.org/web/20030804230351/www.afme.org.uk/news/pace-q&a.shtml
"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..(?)
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We don't know whether anyone was harmed by taking part in the PACE trial CBT or GET groups because 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. And I'm sure they would not have included PEM, however bad, as an adverse event.
We don't know whether anyone actually complied with the exercise plans they were given in the GET group anyway, because they were not monitored objectively eg by wearing actometers throughout the trial.
It is quite possible that patients had the good sense to stop exercising during exacerbation of symptoms, and/or simply cut back on other activities to leave enough energy to do the prescribed exercise, so didn't actually increase their overall activity. The step test graph showed the GET group didn't get any fitter than the other groups.
So the PACE trial, as has been pointed out in some of the recent published critiques, may not have tested actual graded exercise at all. All it tested was the usefulness, or, as it turned out, lack of usefulness, of an attempt to persuade people with undefined fatigue to exercise more.
And the outcome of this massive waste of money was, nobody knows whether they exercised more, nobody knows whether anyone was harmed, but we do know that fatigue and fitness didn't improve any more than the control groups.
We don't know whether anyone actually complied with the exercise plans they were given in the GET group anyway, because they were not monitored objectively eg by wearing actometers throughout the trial.
It is quite possible that patients had the good sense to stop exercising during exacerbation of symptoms, and/or simply cut back on other activities to leave enough energy to do the prescribed exercise, so didn't actually increase their overall activity. The step test graph showed the GET group didn't get any fitter than the other groups.
So the PACE trial, as has been pointed out in some of the recent published critiques, may not have tested actual graded exercise at all. All it tested was the usefulness, or, as it turned out, lack of usefulness, of an attempt to persuade people with undefined fatigue to exercise more.
And the outcome of this massive waste of money was, nobody knows whether they exercised more, nobody knows whether anyone was harmed, but we do know that fatigue and fitness didn't improve any more than the control groups.
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You're probably right. My problem is how they define adverse event. I doubt it included PEM, however deep and long lasting.
Back on track........
AfME how they do it:
"
In early 2016 we surveyed our Supporting Members. Results showed that:
•
91% feel better informed as a result of being a member of Action for M.E.
•
76% feel a stronger sense of hope knowing that we are working with others to
tackle important issues for people with M.E.
One supporter told us: “Action for M.E. is such an important and very necessary
support system for newly diagnosed people and their carers.”
"
We will continue to provide printed information for those people with M.E. whose symptoms prevent
them from access resources online"
"
We will develop a focused programme of UK
policy work.
•
We will work more effectively across the UK’s
four nations, developing a nation-specific
programme of activity.
•
Through our programme of nation-specific
activity, we will take a more targeted focus
on issues specifically related to health,
employment, social care and welfare benefits
to maximise impact and influence.
•
We will build on the success of our
innovative employment support pilot,
Support, Empower and Employ people with
M.E. (SEE M.E.), to improve outcomes for
people with M.E. and the professionals
working with them"
"
We will work with the International Alliance
to extend its reach and collective influence."
As already discussed the International Alliance does not exist, yet.
"We will work with local M.E. support groups
to enhance influence and increase
understanding at a local level"
"News of the M.E./CFS Epidemiology and Genomics Alliance (MEGA) study was met
with excitement when we posted it on our Facebook page in May 2016."
"
“A good strategy must fully acknowledge the past even as it looks robustly forward.
Action for M.E. is nearly thirty years old, yet for almost all that time we have had to
expend scarce resources on counteracting an unfavourable tide of opinion and
practice."
And whose fault is that?
AfME how they do it:
"
In early 2016 we surveyed our Supporting Members. Results showed that:
•
91% feel better informed as a result of being a member of Action for M.E.
•
76% feel a stronger sense of hope knowing that we are working with others to
tackle important issues for people with M.E.
One supporter told us: “Action for M.E. is such an important and very necessary
support system for newly diagnosed people and their carers.”
"
We will continue to provide printed information for those people with M.E. whose symptoms prevent
them from access resources online"
"
We will develop a focused programme of UK
policy work.
•
We will work more effectively across the UK’s
four nations, developing a nation-specific
programme of activity.
•
Through our programme of nation-specific
activity, we will take a more targeted focus
on issues specifically related to health,
employment, social care and welfare benefits
to maximise impact and influence.
•
We will build on the success of our
innovative employment support pilot,
Support, Empower and Employ people with
M.E. (SEE M.E.), to improve outcomes for
people with M.E. and the professionals
working with them"
"
We will work with the International Alliance
to extend its reach and collective influence."
As already discussed the International Alliance does not exist, yet.
"We will work with local M.E. support groups
to enhance influence and increase
understanding at a local level"
"News of the M.E./CFS Epidemiology and Genomics Alliance (MEGA) study was met
with excitement when we posted it on our Facebook page in May 2016."
"
“A good strategy must fully acknowledge the past even as it looks robustly forward.
Action for M.E. is nearly thirty years old, yet for almost all that time we have had to
expend scarce resources on counteracting an unfavourable tide of opinion and
practice."
And whose fault is that?
Looks like AFME do not want their members to see the 2003 archive of AFME and PACE link which they have removed very quickly.
They have some really ignorant and brainwashed supporters. Can't blame some AFME supporters given that they have whitewashed the whole history of AFME being involved with the BPS school and the PACE researchers from their supporters.
Therefore make sure this is publicised!
Now they are challenging @JaimeS about her conversation with tom kindlon. Note that she didn't tag AFME and didn't specifically specify or claim it came from their official AFME twitter account. They read and are fully aware of the legitimate criticism but chose to respond to this tweet. They seem to be very sensitive now to any criticism.
It is clear their paid up member and supporter and defender, Glen Buchanan, is saying this on AFME Facebook. He doesn't state what his official position with them. He is an official volunteer but who knows whether he is paid. Given their secrecy over PACE and not responding to legitimate concerns and deleting reasonable requests and misrepresentation over PACE, how would we ever know the true facts with AFME?
Notice how they ignore and don't respond to any other concerns.
Ask them to respond to why they are the only charity in the English speaking world not to sign:
The PACE authors and other BPS including Richard Horton have stated that pwME are "hysterical" and they have described legitimate criticism of it as a "vocal minority". This is also AFME's view and they collude with these people but they would not dare state it so publicly on their website. I don't know what is worse.
Now we have their attention ask them to respond to all the concerns about the PACE trial and Esther Crawley's smear campaign about patients (junkies, uneducated, poor housing, anti-science), copying photos from young girls and other charities (World Vision) without authorisation and why they are not defending ME patients like they defend their own charity's financial interests.
Updated:
FACT: The official Action For ME Facebook page 'liked' on three occasions Glen Buchanan's smear of those who are not happy with AFME's conduct over the PACE scandal as "hysteria" and "vocal minority".
This was done just after 12 May MEAwareness Day by AFME which further adds insult to pwME. Given the history of the use of these words this is a cause for great concern for the community which we should not allow and should alert everyone to these disgraceful smears.
@AndyPR - can we get photo shots for evidence of AFME 'likes'
They have some really ignorant and brainwashed supporters. Can't blame some AFME supporters given that they have whitewashed the whole history of AFME being involved with the BPS school and the PACE researchers from their supporters.
Therefore make sure this is publicised!
Now they are challenging @JaimeS about her conversation with tom kindlon. Note that she didn't tag AFME and didn't specifically specify or claim it came from their official AFME twitter account. They read and are fully aware of the legitimate criticism but chose to respond to this tweet. They seem to be very sensitive now to any criticism.
It is clear their paid up member and supporter and defender, Glen Buchanan, is saying this on AFME Facebook. He doesn't state what his official position with them. He is an official volunteer but who knows whether he is paid. Given their secrecy over PACE and not responding to legitimate concerns and deleting reasonable requests and misrepresentation over PACE, how would we ever know the true facts with AFME?
Notice how they ignore and don't respond to any other concerns.
Ask them to respond to why they are the only charity in the English speaking world not to sign:
The PACE authors and other BPS including Richard Horton have stated that pwME are "hysterical" and they have described legitimate criticism of it as a "vocal minority". This is also AFME's view and they collude with these people but they would not dare state it so publicly on their website. I don't know what is worse.
Now we have their attention ask them to respond to all the concerns about the PACE trial and Esther Crawley's smear campaign about patients (junkies, uneducated, poor housing, anti-science), copying photos from young girls and other charities (World Vision) without authorisation and why they are not defending ME patients like they defend their own charity's financial interests.
Updated:
FACT: The official Action For ME Facebook page 'liked' on three occasions Glen Buchanan's smear of those who are not happy with AFME's conduct over the PACE scandal as "hysteria" and "vocal minority".
This was done just after 12 May MEAwareness Day by AFME which further adds insult to pwME. Given the history of the use of these words this is a cause for great concern for the community which we should not allow and should alert everyone to these disgraceful smears.
@AndyPR - can we get photo shots for evidence of AFME 'likes'
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