Open letter to the Trustees and Staff of Action for ME about the 'Toolkit for professionals'

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.

 

@Trish

AfME is funding the new International Alliance for ME, whose aim is to engage with the WHO re ME. There are 11 national organizations as members of this international organization which started a year ago. This sounds like a big problem given the actions and philosophy of AfME.

 

@Trish

Thanks for your reply. You have, and continue to do a great deal. Hopefully others will take note, and follow up.

Bit hazy on the history of AfME. Are, or were prominent BPS people involved on the board? Was this group formed by prominent BPS'ers?

 

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.

 

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.

 

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.

 

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.

 

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).

 

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:

• 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.

 

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.

 

Like.

 

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?

 

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.