United Kingdom: News from Forward-ME Group

I notice that @Jonathan Edwards and @Andy are both signatories to the Forward-ME statement on spinal surgery. Are they members now?

 

Indeed. And the application by Paul Davis to extend an invitation to RiME (Campaigning for Research into Myalgic Encephalomyelitis) was rejected by the Countess of Mar.

 

Their names are listed under The 25% ME Group.



Edited to add:

On the new website, the "Associates" are listed only as:

http://forward-me.co.uk/linked-organisations-and-associates.html

Countess of Mar, Chairman
Carol Monaghan (MP) Vice Chairman
Dr Nigel Speight
Dr William Weir
Dr Nina Muirhead

 

I'm not and I don't believe Jo is either.

 

For what it is worth, my experience of working with Margaret Mar in her role as part of the PPI Steering Group for DecodeME has been entirely positive.

 

RiME (Campaigning for Research into Myalgic Encephalomyelitis) is no longer active but was active during period at least 2004 to at least 2010.

 

Their names are listed under The 25% ME Group.

 

Do I need to actually answer this?

 

That should not have appeared in the post (it was from an earlier discarded draft). I've now edited that line out.


But if not being listed as reps for The 25% ME Group (or affiliated to any of the other groups listed), why were no capacities or affiliations listed for Andy and Jo?

And were all signatories circulated a revised version to sign off on?

 

Maybe #MEAction UK, #MEAction Scotland might consider :
https://www.s4me.info/threads/me-advocacy-network-australia-formerly-meaction-australia.10130/

 

I should emphasize that I certainly was not implying anything negative about Forward ME. Far from it.

It's only the principle of what this place is or is not that I was referring to. And what that implies.

Individuals are a separate concept.

Given the cross-overs with sufficient involvement in practice without site involvement by name, it all feels moot. And already in a positive place.

 

for info:
https://www.s4me.info/threads/shoul...nal-problems-requiring-surgery-discuss.16506/

 

I am not a member of Forward ME. I was involved in the statement because the matter was considered by Forward ME following requests from both myself and Andy, I believe.

I have been involved in some correspondence about the position of MEAction. Margaret Mar's decision appeared to be based on reasonable grounds.

Jennifer Brea indicated that her recent email about spine groups was not affiliated to MEAction. However, I have yet to see any statement from MEAction to indicate that it does not wish to be associated with the spine groups or with the dissemination on social media of material about spinal problems in the context of ME in general. I personally think that MEAction needs to make its position much clearer.

 

If that be the strategy it seems strange to throw away the possibilities of tactical advantage offered by the apparent division within the ranks.

 

Given the way we've kept having politicians telling us that divisions amongst UK patient groups undermines progress, this seems like a bad move to me.

I feel sorry for the volunteers at ME Action UK is they're being excluded just because of their association with Brea, even after they signed up to that statement raising concerns about surgery.

I really don't see any benefit to removing their logo from that statement. If there's concern that ME Action is viewed as being associated with the promotion of surgery as a treatment for ME then surely having them sign up to a statement like that is useful for countering that?

Considering what Action for ME have done while being members, this seems particularly weird to me.

 

I won't go in to details but the negotiations over this were considerably more complex. My understanding is that organisations agreed to all put this statement out themselves and as far as I know MEAction has failed to do so despite the statement being significantly watered down from what it might have been. The problem stemmed from a high profile member of MEAction. MEAction has not dissociated itself.

You are someone used to listening for political dog whistling, @Esther12, so I am a bit surprised that you do not see what has been going on here.

From my perspective the action of those still within Forward ME has been just the sort of unity from patient groups on a difficult issue that is needed to see their commitment to balanced information on ME. This shouldn't be seen in terms of politics, just agreeing that the only things that matter are the health interests of the patient community.

 

What would the non-watered down statement have been?