I think they are probably mostly OT's and CBT therapists.
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New Forum Software Installed (Still a few issues but reopening the forum) More details.
Open letter to the Trustees and Staff of Action for ME about the 'Toolkit for professionals'
I think they are probably mostly OT's and CBT therapists.
rvallee
Senior Member (Voting Rights)
Oh I know, but they do pretend to advocate for patients' welfare and represent our interests, hence the fake grassroots. In practice they are what an HIV denial association would be to AIDS patients. Far from representing our welfare, they sabotage it. Bit like... forget his name... GP who has this fake organization with the fancy photoshoots when in fact it's a lobby group for LP made up mostly of "life coaches". Henrik Wusname.
I agree. I think we need to go on reviewing and challenging AfME on all their materials, statements and actions in a thorough and constructive way. I hope others here will pick this up and run with it. I've run out of steam for now.
Barry
Senior Member (Voting Rights)
It sounds like empire building, given their ethos comes across as being "it's about who you know, not what you know". An empire building strategy is to get in there first, because the first in typically becomes the accepted blueprint for what follows and becomes accepted. Microsoft, Intel, etc. AfME seem to be driven by this, and the idea of them driving such an international consensus is very disturbing, given the very limited scientific insights they seem to have.
Snowdrop
Senior Member (Voting Rights)
For me, it's their communication style as well that I find problematic.
It always comes across as institutional speak which translates as, there is no person engaging directly with patients and their concerns but a highly stylised response meant to safeguard the objectives of the institution.
I realise that no one individual can give a personal response of their own opinions but there is IMO a way of communicating that gets past the self-protecting non-response and engages with people in a more real way.
I feel like my above comment is not the most precise. But it's as close as I can get with my limited capacity.
It always comes across as institutional speak which translates as, there is no person engaging directly with patients and their concerns but a highly stylised response meant to safeguard the objectives of the institution.
I realise that no one individual can give a personal response of their own opinions but there is IMO a way of communicating that gets past the self-protecting non-response and engages with people in a more real way.
I feel like my above comment is not the most precise. But it's as close as I can get with my limited capacity.
Action CIND
Established Member
Can you explain the “big problem”? They have only one vote at the table and therefore cannot directly influence any decision.
The toolkit was raised with them andI understood it was taken down until it’s fixed. Did this not occur?
Please send new current info to me when they go back to old ways and I’ll raise it at IAFME. My email is info@actioncind.org. Thank You.
The reply I had on 17th January to my e-mail letter of 12th January asking AfME to withdraw the Toolkit is posted here.
It includes this statement:
I have just checked the AfME website here and it says this:
So it looks like the toolkit is currently not available, though there is no indication whether those who have already been provided with or downloaded copies such as those at the DWP who had a recent briefing described here have been notified that it is under review.
AfME have not informed me or this forum yet about what the current situation with the toolkit is, so it is hardly surprising that we are not all up to speed on it - I have only just figured it out by following up your comment and searching the AfME website.
It would be interesting, @Action CIND to know when you asked them to withdraw it. It's good to see you are working with us on getting AfME to sort out their unhelpful misinformation. I hope we can continue to do so. There is plenty more material that needs a thorough rewrite.
Edit: Checking back on this thread, I see in this post last Thursday 24th January Clare Ogden from AfME gives us a link to the updated page I quoted above. But her post continues to justify the distribution of the old version to DWP workers. She doesn't make it clear in the text of her post here that the toolkit has been withdrawn while it is being reviewed. I admit I missed the link at the top of that message. I was somewhat preoccupied with the parliamentary debate that day.
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Action for M.E.
Established Member (Voting Rights)
Hello. Yes, the toolkit has now been withdrawn from the website. This happened yesterday, and I let Trish know my email, but not before she discovered this for herself by checking this morning. Sorry Trish, I think our posts crossed!
Clare Ogden
Head of Communications and Engagement
Action for M.E.
Hi Clare, @Action for M.E.
I am just catching up with this thread after all the excitements of the debate last week and, as I've said in the above post, I missed the point of your post last Thursday. A few more questions for you:
1. Can you confirm that the Toolkit has been withdrawn while it is being reviewed? And can you clarify whether you have notified the DWP department you trained recently and others using the toolkit that it is under review?
.............................
From the current statement on your website:
ME 'treatment' of any sort that includes goal setting and planned increases in activity is not evidence based, as shown by the failure of the FINE and PACE trials to produce any objective improvements in function or employment in patients who undertook the directive CBT or GET therapies compared to the groups who had no such therapy. There is also a large body of survey and anecdotal evidence from patients that such approaches to treatment have been followed by long term worsening of symptoms.
Therefore an approach to employment support that includes goal setting or planned increases in activity is, by mimicking GET, a form of medical advice / treatment, contrary to your claim. And furthermore they are a form of medical advice that has no clinical trial evidence to support it, has been shown to be ineffective, and may cause harm.
To my question:
2. Will the review remove all suggestion from the toolkit that goal setting and planned increases in activity are in any way appropriate for pwME, and that such approaches amount to medical advice that has been demonstrated in large clinical trials to be ineffective and may cause harm?
...........................
3. Compounding the problem by distributing this form of medical advice to be used in a setting where there is compulsion and patients' receipt of benefits may depend on their compliance with this unevidenced medical advice, is completely inappropriate. Will you cease using the toolkit with the DWP?
EDIT: Crossposted with Clare
I am just catching up with this thread after all the excitements of the debate last week and, as I've said in the above post, I missed the point of your post last Thursday. A few more questions for you:
1. Can you confirm that the Toolkit has been withdrawn while it is being reviewed? And can you clarify whether you have notified the DWP department you trained recently and others using the toolkit that it is under review?
.............................
From the current statement on your website:
There is an inherent contradiction in these statements.
ME 'treatment' of any sort that includes goal setting and planned increases in activity is not evidence based, as shown by the failure of the FINE and PACE trials to produce any objective improvements in function or employment in patients who undertook the directive CBT or GET therapies compared to the groups who had no such therapy. There is also a large body of survey and anecdotal evidence from patients that such approaches to treatment have been followed by long term worsening of symptoms.
Therefore an approach to employment support that includes goal setting or planned increases in activity is, by mimicking GET, a form of medical advice / treatment, contrary to your claim. And furthermore they are a form of medical advice that has no clinical trial evidence to support it, has been shown to be ineffective, and may cause harm.
To my question:
2. Will the review remove all suggestion from the toolkit that goal setting and planned increases in activity are in any way appropriate for pwME, and that such approaches amount to medical advice that has been demonstrated in large clinical trials to be ineffective and may cause harm?
...........................
3. Compounding the problem by distributing this form of medical advice to be used in a setting where there is compulsion and patients' receipt of benefits may depend on their compliance with this unevidenced medical advice, is completely inappropriate. Will you cease using the toolkit with the DWP?
EDIT: Crossposted with Clare
To me the creation and dissemination of this toolkit points to serious problems in the way AfME is run. Was it reviewed? If so why didn't reviewers pick up on the issues - were they chosen to be sympathetic?
The basic question is does AfME have an adequate process for the production of such documents including review cycles? The evidence from this suggests that it doesn't which is wider management issue than just this toolkit.
Alvin
Senior Member (Voting Rights)
This is the crux of the issue right here, they are in their own reality and humour us when we call them out but without us on their backs they are happy to pretend the last 5 years never happened (while denying this is what they are doing).
Action for M.E.
Established Member (Voting Rights)
Hello. This post addresses a number of questions/concerns raised in this thread. I am trying to respond in chronological order, and will take a look at the most recent posts (#112 onwards) as soon as I can. Once again, I thank you for your patience.
Clare Ogden
Head of Communications and Engagement
Action for M.E.
@Trish asked if it was possible to "see a copy of the SEE ME project report with detailed breakdown of figures of how many participants achieved what end points over what time etc. Were objective criteria for success set in advance, and was there a matched control group who did not get any help?"
I'm not able to share any project reports with you, as they were compiled for internal use only. The outcomes the service was measured against were:
1. Service users were supported to achieve their employment goals
2. Service users were more confident and better able to independently secure the support and benefits available to them
3. Through engagement with service delivery staff in partner organisations would develop increased knowledge, skills and understanding about M.E. in relation to employment.
4. Service users were better informed about their rights and entitlements and how to assert/claim them.
5. Service users have an improved sense of wellbeing as a result of their engagement with employment support, and their progress and achievements.
It would not have been appropriate to deny people access to a service in order to provide a “matched control group.” Given that everyone’s employment goals are unique to them and their individual circumstances, I can't see how this would be achievable.
The role of our Trustees is to decide our strategic direction, so in that sense they are absolutely involved, as we don't take on projects that don't fit with our strategy. In terms of being a democratic organisation, our Supporting Members are asked to vote the on the appointment of new Trustees, and re-election of existing Trustees. Trustees can be elected for two three-year terms with the potential for an additional, exceptional, term.
An informal version of the alliance had its first meeting in 2015, with Chief Executives from US, Australia, Spain and Norway, with the aim of sharing insight and good practice, and asking how countries might work together to improve the lives of people with M.E.
From this starting point, the idea developed that a more formal alliance, able to engage at World Health Organization (WHO) level, would be the best way to achieve these aims.
The International Alliance for M.E. was formally launched in 2018, with Action for M.E. funding this initiative for two years (we are now in the second year of funding for this), with the secretariat of IAFME being based in Geneva. The IAFME is looking at how it can diversify its funding.
At the end of last year, the IAFME, with 11 members, became formally constituted through the adoption of a Memorandum of Understanding.
Through a coordinated, inclusive and worldwide advocacy movement, the IAFME aims to encourage a coordinated and appropriate public health response to M.E. from the WHO and its Member States. It is open to any national M.E. organisations that want to join this collaborative effort.
IAFME member organisations are working to build a global framework for M.E. that lays the foundation for national policy changes that will improve the lives of people with M.E. By coming together in this way, the IAFME can act as a formal consultation channel with the WHO and its Member States.
In particular, the IAFME wants the WHO and its Member States, through the adoption of a resolution at the WHA, to:
I appreciate this feedback – thank you. I am a real person, trying to engage directly with you and your concerns. In my role I often have to use quite formal language but I understand this is not helpful here, and I'm trying to be mindful of that when I write my responses.
EDIT: I've updated the info on the IAFME to give a bit more detail.
Clare Ogden
Head of Communications and Engagement
Action for M.E.
@Trish asked if it was possible to "see a copy of the SEE ME project report with detailed breakdown of figures of how many participants achieved what end points over what time etc. Were objective criteria for success set in advance, and was there a matched control group who did not get any help?"
I'm not able to share any project reports with you, as they were compiled for internal use only. The outcomes the service was measured against were:
1. Service users were supported to achieve their employment goals
2. Service users were more confident and better able to independently secure the support and benefits available to them
3. Through engagement with service delivery staff in partner organisations would develop increased knowledge, skills and understanding about M.E. in relation to employment.
4. Service users were better informed about their rights and entitlements and how to assert/claim them.
5. Service users have an improved sense of wellbeing as a result of their engagement with employment support, and their progress and achievements.
It would not have been appropriate to deny people access to a service in order to provide a “matched control group.” Given that everyone’s employment goals are unique to them and their individual circumstances, I can't see how this would be achievable.
The role of our Trustees is to decide our strategic direction, so in that sense they are absolutely involved, as we don't take on projects that don't fit with our strategy. In terms of being a democratic organisation, our Supporting Members are asked to vote the on the appointment of new Trustees, and re-election of existing Trustees. Trustees can be elected for two three-year terms with the potential for an additional, exceptional, term.
An informal version of the alliance had its first meeting in 2015, with Chief Executives from US, Australia, Spain and Norway, with the aim of sharing insight and good practice, and asking how countries might work together to improve the lives of people with M.E.
From this starting point, the idea developed that a more formal alliance, able to engage at World Health Organization (WHO) level, would be the best way to achieve these aims.
The International Alliance for M.E. was formally launched in 2018, with Action for M.E. funding this initiative for two years (we are now in the second year of funding for this), with the secretariat of IAFME being based in Geneva. The IAFME is looking at how it can diversify its funding.
At the end of last year, the IAFME, with 11 members, became formally constituted through the adoption of a Memorandum of Understanding.
Through a coordinated, inclusive and worldwide advocacy movement, the IAFME aims to encourage a coordinated and appropriate public health response to M.E. from the WHO and its Member States. It is open to any national M.E. organisations that want to join this collaborative effort.
IAFME member organisations are working to build a global framework for M.E. that lays the foundation for national policy changes that will improve the lives of people with M.E. By coming together in this way, the IAFME can act as a formal consultation channel with the WHO and its Member States.
In particular, the IAFME wants the WHO and its Member States, through the adoption of a resolution at the WHA, to:
- recognise M.E. as a “serious, chronic, complex, and multisystem disease that frequently and dramatically limits the activities of affected patients” (Institute of Medicine, 2015) and adopt measures to provide a global and co-ordinated public health response to it
- undertake meaningful, transparent consultation with M.E. organisations and patients on decisions related to M.E.
- support accelerated biomedical research to develop better diagnostic methods and treatments for M.E.
- ensure appropriate medical education for professionals working with M.E. patients.
I appreciate this feedback – thank you. I am a real person, trying to engage directly with you and your concerns. In my role I often have to use quite formal language but I understand this is not helpful here, and I'm trying to be mindful of that when I write my responses.
EDIT: I've updated the info on the IAFME to give a bit more detail.
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Sasha
Senior Member (Voting Rights)
Thank you for answering posts. I was hoping that you might answer this post of mine (#74), which got 13 'likes', indicating that others were also concerned about this issue.
Barry
Senior Member (Voting Rights)
Like.
large donner
Guest
How many times do we have to go through this crap with AfME before they just disband themselves and do us all a favour once and for all?
How many times do we have to hear them defending some big pile of crap they have chucked us all in with a pathetic defence. Then we have to baby step them and spoon feed them the problems with their latest allegiance or programme back to them whilst they stand there opened eyed glaring at us saying whats the problem.
Next they finally act as if they get it and think they can just put out a half baked statement to reverse all the damage they just caused which usually never does because that statement usually tries to play all sides, and in the case of PACE for example their support led to a "scientific paper" persecuting us for years. Now they are in bed with the DWP whose sweeping financial attacks on the poor and disabled have been devastating.
As one of the few ME charities that actually has paid staff including a CEO on a large salary how much longer can they continue like this?
How many times do we have to hear them defending some big pile of crap they have chucked us all in with a pathetic defence. Then we have to baby step them and spoon feed them the problems with their latest allegiance or programme back to them whilst they stand there opened eyed glaring at us saying whats the problem.
Next they finally act as if they get it and think they can just put out a half baked statement to reverse all the damage they just caused which usually never does because that statement usually tries to play all sides, and in the case of PACE for example their support led to a "scientific paper" persecuting us for years. Now they are in bed with the DWP whose sweeping financial attacks on the poor and disabled have been devastating.
As one of the few ME charities that actually has paid staff including a CEO on a large salary how much longer can they continue like this?
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@large donner I think your anger is completely understandable and many of us share it, even if we don't express it so forcefully. I have suggested somewhere on another thread that the best thing AfME could do for pwME would be to shut up shop, close down their website, and pass their funds on to other organisations.
Given that is not going to happen all we can do is keep pointing out clearly where AfME is going wrong and where it is producing misinformation and asking them to change it. I think this instance where they have agreed to take the Toolkit down while it is re-written is a step in the right direction. The crunch comes when we see the new version.
Given that is not going to happen all we can do is keep pointing out clearly where AfME is going wrong and where it is producing misinformation and asking them to change it. I think this instance where they have agreed to take the Toolkit down while it is re-written is a step in the right direction. The crunch comes when we see the new version.
@Action for M.E. Thank you for coming here today to answer more questions. I appreciate it.
If that is the case, none of your project reports have been peer reviewed or published, so none of them should be used as evidence for ongoing action that involves strategies for helping or giving advice to patients or that affects patients' lives.
Action CIND
Established Member
It was mentioned by a participant in our webinar on IAFME on Jan 24. I had the participant give me the link and I forwarded the link to Alexandra Heumber that evening (Eastern time). She dealt with it when she got into the office in the morning as high priority. Shortly thereafter I got word it would be taken down.
I assure you IAFME takes these kinds of issues very seriously. Please don’t blame IAFME because of the actions of one party. We are committed to making a difference. Getting the WHO on board would be a great accomplishment. Thank you.