Firestormm
Senior Member
- Messages
- 5,055
- Location
- Cornwall England
-
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.
Action for ME: Video - Do you care about ME?
- Thread starter Firestormm
- Start date
The big question is, do Action for ME care About M.E. More than they care about their salaries? They have just announced with great fanfare two small research studies costing in total less than their CEO's huge salary.
Many of us feel completely betrayed by them, their collusion in the PACE trial during which they advised that the only form of subjective measurement of results be dropped, their promotion of GET and CBT and the fatigue clinics that torture us with them, their willingness to work with the Wessely school of psychiatry including being part of the Collaborative that includes Esther Crawley and Peter White, their refusal to offer full membership and voting rights to any but their self appointed executive, their advertising of the Lightning Process and other questionable commercial 'treatments' and their enormous salaries compared to the tiny amount they spend on research.
Many of us feel completely betrayed by them, their collusion in the PACE trial during which they advised that the only form of subjective measurement of results be dropped, their promotion of GET and CBT and the fatigue clinics that torture us with them, their willingness to work with the Wessely school of psychiatry including being part of the Collaborative that includes Esther Crawley and Peter White, their refusal to offer full membership and voting rights to any but their self appointed executive, their advertising of the Lightning Process and other questionable commercial 'treatments' and their enormous salaries compared to the tiny amount they spend on research.
SilverbladeTE
Senior Member
- Messages
- 3,043
- Location
- Somewhere near Glasgow, Scotland
Min,
yup, they are "collaborators", up to their sleazy stinky balls in backing up the "Establishment" while sucking up nice fat income for themselves.
I do not like traitors.
yup, they are "collaborators", up to their sleazy stinky balls in backing up the "Establishment" while sucking up nice fat income for themselves.
I do not like traitors.
Undisclosed
Senior Member
- Messages
- 10,157
It's not a bad video and it would be something I would show my family to help them understand. The patient survey results write-up is quite informative.
@Min and @SilverbladeTE
forgetting the "watering down" of the Scottish Good Practice Guidelines from a
definitive NICE guidelines for CFS and Canadian concensus for ME,
to "the gp can choose which to use"
and including a lot more of the "we've just put a voodoo hex on ourselves".
forgetting the "watering down" of the Scottish Good Practice Guidelines from a definitive NICE guidelines for CFS and Canadian concensus for ME,
to "the gp can choose which to use"
and including a lot more of the "we've just put a voodoo hex on ourselves".
- Messages
- 106
Reducing people to an anonymous 'they/them' is a tactic most frequently used by those with fascistic tendancies, where having removed any 'human identity' it then becomes easy to denigrate without compunction. It's an odd thing to see on forums where the word 'community' is traded with great frequency.
Different organisations pursue different priorities and no one is under any obligation to support a particular organisation - some 5,000 individuals and families support AfME, in full knowledge of what the organisation does, how it operates and what it stands for. To describe the organisation as "collaborators", or traitors reflects directly on those who support the organisation, that is patients with ME. In the UK both AfMe and the MEA operate in a way that seeks to achieve multiple objectives - personal level support for patients, education, advocacy, support for research etc, in contrast for example, the IIME has a focus limited to promoting research. Neither approach alone will meet all the requirements of patients, as neither would the individual models of operation of AfME or the MEA. What is important however is that organisations work together wherever possible and treat each other respectfully as representative of their supporters. Hyperbolic attacks just make patients who support a particular organisation feel they have no place on forums like this - so much for claims about a patient community.
How any organisation pays its staff is a matter for the supporters and Trustees, in the case of AfME, the CEO is paid close to the median for UK charities of comparable size (http://www.thirdsector.co.uk/news/1...executives-rose-32-per-cent-year-says-acevo/ ) while other staffing costs - total of 17 not 9 as claimed above - gives an average salary that looks typical of the Third Sector. http://apps.charitycommission.gov.uk/Accounts/Ends19/0001036419_AC_20130331_E_C.pdf
The average salary for a charity chief executive in the UK this year is £58,000 , less outside London. AfME are in Bristol.
I do not believe that supporters of AfME realise that the charity spends nearly as much on salaries as it does on charitable giving, nor that the charity appear to actively support the psychosocial model of ME by endorsing the fatigue clinics that offer only psychological treatments.
The situation for myalgic encephalomyelitis sufferers in the UK has not improved in the time the MEA and AfME have been in existence, it appears to be worsening.
People who use these boards are entitled to hear different opinions so they can make their ow minds up, they are not babies.
I do not believe that supporters of AfME realise that the charity spends nearly as much on salaries as it does on charitable giving, nor that the charity appear to actively support the psychosocial model of ME by endorsing the fatigue clinics that offer only psychological treatments.
The situation for myalgic encephalomyelitis sufferers in the UK has not improved in the time the MEA and AfME have been in existence, it appears to be worsening.
People who use these boards are entitled to hear different opinions so they can make their ow minds up, they are not babies.
Last edited:
Undisclosed
Senior Member
- Messages
- 10,157
Please Note:
To be fair, every time somebody posts anything about AfME, it turns into a discussion about how much the CEO earns, past behaviour, etc etc. Why not just discuss the video and the survey in a constructive manner? Tearing down any group like this does nothing and again this is a breach of "Rule 4: Criticize constructively, don't just dump". This goes for any organization.
The subject of this thread is after all about their video and survey, not how much the CEO earns or past behaviour of this organization.
Thank you.
To be fair, every time somebody posts anything about AfME, it turns into a discussion about how much the CEO earns, past behaviour, etc etc. Why not just discuss the video and the survey in a constructive manner? Tearing down any group like this does nothing and again this is a breach of "Rule 4: Criticize constructively, don't just dump". This goes for any organization.
The subject of this thread is after all about their video and survey, not how much the CEO earns or past behaviour of this organization.
Thank you.
If this is an instructional video for the public
I dont like the title 'Do you care about M.E.' This open question, perhaps attempting to engage the public to think will instead lead to - not really and no. Also, personally fed up of mixing up me/M.E.
The music nearly made me fall asleep in a haze of boredom. And overall didnt generate the empathy in me which well done bytes can.
Would definately not send it to anyone I know due to this.
I dont like the title 'Do you care about M.E.' This open question, perhaps attempting to engage the public to think will instead lead to - not really and no. Also, personally fed up of mixing up me/M.E.
The music nearly made me fall asleep in a haze of boredom. And overall didnt generate the empathy in me which well done bytes can.
Would definately not send it to anyone I know due to this.
- Messages
- 1,446
.
AFME have only 5,000 members now?
.
AFME trustees should be asking themselves why their membership is falling yearly.
.
The last time I asked AFME how many (charity) members it had the response was approx 6,500 in 2011.
In 2010 Tony Golding (AFME Trustee) referred to AFME's "7,000 members". In 2008 I asked AFME how many members and the response from Healther Walker (AFME Communications manager at the time) was "8,000 members". Earlier in the 2000's it was 9,000 members.
As more and more people are being diagnosed with 'CFS' every year, it would appear that existing AFME members are leaving faster than new members are joining.
.
AFME maintain a high public profile, make many public and press statements, and ME sufferers have the right to question and criticise the charity's actions and statements, especially when the actions conflict with the charity's public image, which, over the years appears to consist of cosmetic 'campaigns', lots of sweet words.
.
AFME's collusion with the PACE Trial is still having destructive repercussions.
By the way, in 2004, AFME promoted the PACE Trial to its members as "A study on Pacing" but barely mentioned that PACE was substantially about CBT and GET. I have the 2004 copy of AFME's magazine 'Interaction' with the article by AFME CEO which enthused "rah rah rah - we have a study on Pacing, Hooray Hooray".
.
Only much later did the AFME members learn that PACE was designed and run by White Sharpe and Chalder and was substantially a CBT/GET study with AFME's version of pseudo pacing (the so called 'pacing' provided by AFME was a construction of pacing which was not recognisable to most ME sufferers). Because AFME did not inform their members. The published 'PACE Trial Identifier', and AFME's description of the forthcoming PACE Trial to its members in 2004, were not the same.
That is just one example of AFME saying one thing and doing another.
.
.
Former members should have the right to criticise a charity which they paid membership fees to and which they think has betrayed them. All ME sufferers should have the right to criticise and challenge AFME... because the charity presumes to speak for all ME sufferers.
I agree with Min:
"Many of us feel completely betrayed by them, their collusion in the PACE trial during which they advised that the only form of subjective measurement of results be dropped, their promotion of GET and CBT and the fatigue clinics that torture us with them, their willingness to work with the Wessely school of psychiatry including being part of the Collaborative that includes Esther Crawley and Peter White, their refusal to offer full membership and voting rights to any but their self appointed executive, their advertising of the Lightning Process and other questionable commercial 'treatments' and their enormous salaries compared to the tiny amount they spend on research."
.
.
AFME have only 5,000 members now?
.
AFME trustees should be asking themselves why their membership is falling yearly.
.
The last time I asked AFME how many (charity) members it had the response was approx 6,500 in 2011.
In 2010 Tony Golding (AFME Trustee) referred to AFME's "7,000 members". In 2008 I asked AFME how many members and the response from Healther Walker (AFME Communications manager at the time) was "8,000 members". Earlier in the 2000's it was 9,000 members.
As more and more people are being diagnosed with 'CFS' every year, it would appear that existing AFME members are leaving faster than new members are joining.
.
AFME maintain a high public profile, make many public and press statements, and ME sufferers have the right to question and criticise the charity's actions and statements, especially when the actions conflict with the charity's public image, which, over the years appears to consist of cosmetic 'campaigns', lots of sweet words.
.
AFME's collusion with the PACE Trial is still having destructive repercussions.
By the way, in 2004, AFME promoted the PACE Trial to its members as "A study on Pacing" but barely mentioned that PACE was substantially about CBT and GET. I have the 2004 copy of AFME's magazine 'Interaction' with the article by AFME CEO which enthused "rah rah rah - we have a study on Pacing, Hooray Hooray".
.
Only much later did the AFME members learn that PACE was designed and run by White Sharpe and Chalder and was substantially a CBT/GET study with AFME's version of pseudo pacing (the so called 'pacing' provided by AFME was a construction of pacing which was not recognisable to most ME sufferers). Because AFME did not inform their members. The published 'PACE Trial Identifier', and AFME's description of the forthcoming PACE Trial to its members in 2004, were not the same.
That is just one example of AFME saying one thing and doing another.
.
.
Former members should have the right to criticise a charity which they paid membership fees to and which they think has betrayed them. All ME sufferers should have the right to criticise and challenge AFME... because the charity presumes to speak for all ME sufferers.
I agree with Min:
"Many of us feel completely betrayed by them, their collusion in the PACE trial during which they advised that the only form of subjective measurement of results be dropped, their promotion of GET and CBT and the fatigue clinics that torture us with them, their willingness to work with the Wessely school of psychiatry including being part of the Collaborative that includes Esther Crawley and Peter White, their refusal to offer full membership and voting rights to any but their self appointed executive, their advertising of the Lightning Process and other questionable commercial 'treatments' and their enormous salaries compared to the tiny amount they spend on research."
.
.
Last edited:
manna
Senior Member
- Messages
- 392
when discussed on another forum, it was clear the supporters didn't know what the organisation does and, personally, i'm happy to hear the criticism. i understand that repeatedly, its a little wearing but then if i only arrived today and folk had stopped raising the concerns, i wouldn't know them. now if their stance has changed then time will tell and unfortunately mud sticks to all of us.
its good to remember not to depersonalise people or organisations, i agree.