Action for ME has joined S4ME

I think things have changed a lot in the last few months. MEGA per se is off the menu. When something gets back on the menu I think it is much more likely to involved the LSHTM Biobank now.

 

I agree with @Alvin that AfME have been trying to have the best of both worlds.

I recall that years ago I had a phone call from them when I cancelled my membership. I told them that it was because of their support for the PACE trial. The response was deafening silence. I can't been the only person to raise this yet there appeared to be no effort to address the concerns of members.

It was an especially sensitive issue for me at the time as through the data protection act I had discovered that Peter White was advising my insurance company to refuse my claim on the grounds that I have not had "optimal treatment" of CBT / GET.

More recently I do think that AfME are far too willing to ban / block people on social media who disagree with them. I have experience of this after a Twitter exchange which consisted of courteous disagreement with their stance. Disagreement is not harassment it is disagreement!

This reminds me of some parts of the NHS where patient engagement is only listened to when the views expressed are what the CCG / Provider want to hear.

I really don't see how I can trust AfME in the future if they continue to be unable to acknowledge that mistakes have been made in the past. It is not good enough to say that people have moved on or that views have changed. As an organisation they need to take responsibility for the consequences of their actions, irrespective of the individuals involved at the time.

As far as I am concerned the AfME "brand" is seriously tarnished. As things stand I certainly wouldn't want AfME anywhere near the Biobank.

 

Having thought about this further I think that a big problem is that AfME don't think there is a problem. I suspect that they are of the view that they have skillfully negotiated a path between BPS and biomedical to maximise revenue over the years and so continue to perpetuate themselves as an organisation.

Lip service is given to engagement with patients via social media or forums such as this, but when it gets down to the nitty gritty AfME continue to prevaricate or simply block those who disagree with them.

How an organisation responds to criticism and negative feedback is a good indication of the culture within their organisation, the robustness of their processes and procedures, and their approach to change and improvement.

If what I have seen of AfME over the years is a good indicator of their culture then without a significant shift in approach I have little hope for positive change.

 

Well I have taken a leaf out of their book.

I let my membership lapse years ago and recently received a letter asking if they could still keep in touch. Given how they respond to posts they don't like I shredded it.

AfME are now blocked from personal contact and will remain so until the situation changes. I'm not holding my breath.

 

I don't think we have signed it yet, have we? (as a group)

 

Good thtought, @MeSci. @Andy might know?

 

Simple answer, no we haven't. Should we? It predates the existence of S4ME by 7-8 months, and is now 13 months old itself, is it now worth us consulting our members to make sure that it is something they would like us to do (no matter how certain we might that it will be) and then getting our name put on it?

 

@dave30th , any thoughts on this?

 

Can we sign the open letter? If so we should put it to a membership vote. I would vote to do so.

 

If we are to be a community based on members having voting rights, I can't think of a better first measure.

I'd expect near unanimity in the membership. I do think that votes for a forum signature to such documents should require a standard for passage that is well above that of a simple majority vote and one that reflects a clear consensus.

Signing the Open Letter is something I expect would gather near-unanimous support.

Let's do it. It would add more support to the effort. It would include S4ME in the mix of "players." And it would make members feel involved as voting members of the forum in our first test of that privilege.

All wins. No downsides that I can see.

Bill

 

Just looking thro AfMEs Scottish Hub literature:
"
Action for M.E. has co-funded the UK’s first biobank for ME-CFS, an essential
piece of research infrastructure"

https://www.actionforme.org.uk/uploads/managing-me-a-guide-for-gps-in-scotland.pdf

no mention of the organisations actually listed on the Biobank site:

https://cureme.lshtm.ac.uk/participants/

and on professional bodies CMRC, BACME and IACFS/ME (?)

and then there is also the usual stuff on CBT.

IMO as far as advocacy goes @Emsho did more to expose the truth in ten minutes than AfME have managed in years.

 

And yet they are involved in the parliamentary briefing document.

 

That doesn't even begin to start to make up for all the other stuff they've also been involved with. Including PACE.

 

My point is that AfME should not be involved in the drafting of the parliamentary briefing document at all.

 

Aha the penny drops: I thought you were defending them!

 

Nope!!

 

I think AFME were just given the peter white pain study, if that's what is being referred to, to continue once the group "CFS something or other" folded when their CEO " Anne someone" died a few years ago. They had been funding it and as a group who favoured the CFS name I'm sure AFME were seen as the natural inheritor.

Edit . The link says this too:

"Action for M.E. took over the management of this study in July 2014, following the closure of the CFS Research Foundation, which had already secured and allocated funding for it."

 

Action for M.E. – Placing Patient Views at the Heart of a New Research Strategy
December 6, 2013

Discussion with Sonia Chowdhury at the other place I had not read before.

https://phoenixrising.me/archives/20781

I didn't realise Stephen Holgate was their Research Advisor at the time;

Still no full exposure of the PACE trial 5 years later.

 

Would be nice if they could put science at the heart of the new research strategy.....