United Kingdom: News from Forward-ME Group

I think it's really important to remember that without the advocacy that has been done, we might have been in an even worse situation than we currently are.

Successful advocacy isn't just about affecting change that moves us forward, it's equally important (if not more) to make sure things aren't sliding backwards. The fact that we aren't seeing substantial improvements doesn't necessarily mean that the advocacy hasn't been successful.

For example, campaigning for more ME centers to open is really important, but it's just as important (if not more) to try and make sure the existing ones aren't closed down.

That kind of work isn't very "glamorous", though. People who dedicate themselves to that kind of advocacy rarely get the appreciation they deserve. It's not the kind of work that creates headlines, not the kind of wins that are celebrated on social media.

Based on discussions on social media and Swedish ME groups on Facebook in particular, my impression is that pwME in general tend to take the permanence of progress and wins for granted, in that they don't realise/believe that things we have "won" can be lost again. Sadly, in reality progress is much more fragile than that...

Personally, I feel that we have been sliding backwards in Sweden for a number of years now. But that doesn't mean that the advocacy work that has been done has been meaningless or that it has "failed". To me it just signals that we would have been even worse off today if no work had been done to try and push back against that trajectory.

 

I'm afraid I have no recollection of it at all although it may be somewhere in my archive - but I doubt it.
Never really got involved in the politics of it.

 

Minutes now available from the 26th November meeting, http://www.forward-me.co.uk/26th-november-2020.html

 

Baroness Scott has joined Forward-ME.

Tweet from Tom Kindlon

"I had missed this information that there is a new ME advocate, Baroness Scott, in the UK House of Lords. Taken from the latest reMEmber newsletter (they are at remembercfs.org"

 

Margaret Mar to step aside from Forward-ME, http://forward-me.co.uk/stepping-aside.html

 

Minutes from the 16th March meeting, http://forward-me.co.uk/16-march-2021.html

 

Good to see that Baroness Scott is a member, though not at the March meeting.

I am encouraged by this news, ie the potential change of structure and a more responsive/action-based core.

 

From the minutes.

"He is from a business background and has spoken to various individuals who have given different takes on the role of Forward ME and the challenges that present. "

"Current roles of AM include mentoring and coaching organisations and those skills would be useful here."

So my interpretation is that he is in private business.

 

Section 3 of the minutes that discusses Andrew Morris' involvement sounds good.

"
AM would initially form a steering group of 4-6 people to discuss issues of the day and then relayed to the wider group. This would keep the organization moving and members involved.

We would identify a ‘core purpose’. Allocate by agreement ownership of certain issues to lead the way forward. We would lay down a set of objectives to set out what we want to achieve which would be measurable and monitored. "

I like the allocation of responsibility - really important if you want to keep things moving forward and ongoing monitoring, so if one approach doesn't work you find out sooner rather than later and try another.

 

Article from the ME Association about Margaret Mar stepping aside, https://meassociation.org.uk/2021/04/margaret-mar-retires-as-chair-of-forward-me/

A biography of Andrew Morris has now been added on this page, https://www.forward-me.co.uk/stepping-aside.html

 

Baroness Scott on Twitter.

"Margaret Mar has made a major contribution to furthering our understanding of ME with the public, health professionals and Government. We owe her a huge debt of gratitude."

 

Minutes from the 12th May meeting are here, http://forward-me.co.uk/12-april-2021.html

 

Minutes from 21st April meeting here: http://forward-me.co.uk/21st-april-2021.html

 

not new or news but am curious about something on the Forward ME website under Presentations;
http://forward-me.co.uk/presentations/

there is a presentation (from 2009) by Esther Crawley about the formation of the CCRNC
(CFS/ME Clinical and Research Network and Collaboration) that I've never heard of, was this the precursor to the CMRC?
Why is this presentation on the website?

 

It looks as though it was the precursor to BACME (https://meassociation.org.uk/2010/0...ing-role-of-new-body-for-mecfs-professionals/). Nothing to do with CMRC. The presentation was given to ForwardME in April 2009. https://www.forward-me.co.uk/10-th-july-2019.html (ignore the date in the html address).

 

there is a presentation (from 2009) by Esther Crawley about the formation of the CCRNC
(CFS/ME Clinical and Research Network and Collaboration) that I've never heard of, was this the precursor to the CMRC?
Why is this presentation on the website?[/QUOTE]

I don't think that it's helpful to have these minutes on there, without at least a caveat, but FME is being reorganised, so maybe not their prioity atm?

 

Those minutes make for a very interesting read, particularly given all the 'players' taking part and that it was while the PACE trial was ongoing. I've put it on the Wayback machine incase it gets deleted.

Given recent events
"
Lightning Process:

Charles Shepherd had been made aware of a meeting which was to take place at University College London in conjunction with Great Ormond Street Hospital which appeared to promote the Lightning Process for patients with CFS/ME. As Dr Crawley knew something about the subject, she was asked to remain and to contribute to the discussion. Of particular concern was the promotion of the programme to vulnerable clinicians who had just started to practice. After some discussion about the pros and cons of the programme, it was agreed that Mary-Jane Willows would talk to the organisers on behalf of Forward-ME highlighting our concerns."

How ironic as Crawley and MJW were the ones who pushed through the SMILE trial.

 

I like the idea of "vulnerable" clinicians. Aren't words versatile.

 

On a forum years ago we had a mother with 2 children and herself sick living on benefits. She phoned Action for ME and spoke to MJW who recommended she get her kids into LP. I was horrified that an ME organisation would allow this to happen.

She was frantically trying to find ways she could finance the course as she was told it was very effective and who wouldn't want that for a child with ME.