United Kingdom: News from Forward-ME Group

Suffolkres said:
...I am of the opinion that diversity is good and mergers often mean unwelcome compromises......
Not a 'two legs good, four legs bad Orwellian situation!!!
Click to expand...

When Westcare was absorbed into AfME, I don't recall any function of Westcare being retained. But Westcare's former lead, Dr Richard Sykes, was granted several years of funding via his brother's charitable trust to enable him to continue working on his "CISSD Project" (2003 to 2007) (aka the "WHO Somatisation Project"). These grants were administered by AfME:

https://meagenda.wordpress.com/2009/06/03/cissd-project-report-from-dr-richard-sykes/
 
Dx Revision Watch said:
CMRC – Dr David Strain is succeeding S Holgate as Chair so our two organisations will not come together and the PAG will remain with CMRC.
Click to expand...

Dx Revision Watch said:
Had there been discussion of the CMRC PAG potentially transferring from the CMRC to Forward-ME? Or of Forward-ME and the CMRC potentially merging and might this be what is being referred to in the May minutes, at point 7?
Click to expand...

See my posts from July:
United Kingdom: CFS/ME Research Collaborative (CMRC) news

The CMRC will remain a separate entity as a new Chair was found. The CMRC PAG remains a member of FME (though not in Steering group), but our primary role is still to provide a patients' voice to the CMRC.
 
InitialConditions said:
See my posts from July:
United Kingdom: CFS/ME Research Collaborative (CMRC) news

The CMRC will remain a separate entity as a new Chair was found. The CMRC PAG remains a member of FME (though not in Steering group), but our primary role is still to provide a patients' voice to the CMRC.
Click to expand...

From the other thread:

There was a proposal for the CMRC to be folded into ForwardME. The CMRC Patient Advisory Group (PAG), in particular, was concerned that this proposal would mean the relegation of the main body promoting biomedical research for ME/CFS in the UK, and felt that the CMRC should retain its independence and sole aim of increasing biomedical research funding and collaboration, while the PAG would potentially join ForwardME as a member.
Click to expand...


I see, thank you. I find the minutes of Forward-ME meetings are often too brief to provide adequate context.
 
Growing Membership:
We are delighted to welcome #ME-Action UK and Doctors with ME into our group, helping to ensure broader
perspective and increased coordination. We are also engaging with other external organisations, building
bridges with practitioners and medical groups
Click to expand...
Building links with BACME:
BACME’s support for the new NICE guideline on ME represents a significant step forward for the care of people with ME. Forward-ME is exploring increased cooperation with BACME as part of our work to
implement the new NICE guidelines and increase research into the disease.
Click to expand...
 
Last edited:
From the minutes
"The Chair reminded members of our policy to solely refer to ‘ME’ and to drop ‘CFS.’"

Not something that I would support at this time. And I wonder how widely members of Forward-ME are meant to apply that? Just internally within Forward-ME or are they meant to go back to their organisations and drop CFS "because Forward-ME said to"?
 
Andy said:
From the minutes
"The Chair reminded members of our policy to solely refer to ‘ME’ and to drop ‘CFS.’"

Not something that I would support at this time.
Click to expand...

Why? Because it would get people's backs up unnecessarily, or the practicalities or? I agree there are better things to focus on.
 
Ariel said:
Why? Because it would get people's backs up unnecessarily, or the practicalities or? I agree there are better things to focus on.
Click to expand...
Because the whole naming issue is currently a complete mess and dropping CFS abandons those people who have been diagnosed, rightly or wrongly, with it. I understand the attraction of "ME" and the aversion to "CFS" but the situation is currently far too complicated to just drop CFS.
 
Andy said:
"The clinical leader of the Nottingham ME/CFS service, managed by @pics_primary has written to Forward-ME thanking us for highlighting the out-of-date information on their website, and advising that they have immediately removed it."

Click to expand...


There are some issues with this that I've flagged with FME. They've done the bare minimum and the webpage still needs lots of work.

Do we have a thread here where we have discussed the material on ME/CFS services' websites (and any literature they distribute to patients)? I'm sure we've discussed it, but I can't find anything.

Mod note: new thread here United Kingdom: Nottingham ME/CFS Service
 
Last edited by a moderator:
You must log in or register to reply here.
Back
Top Bottom