United Kingdom: News from Forward-ME Group

It was in the beginning. But there were clashes and Invest in ME withdrew.

I note that MEAction were forced out, following the joint position statement, but are now restored.

 

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/

 

https://www.s4me.info/threads/action-for-me-on-me-pedia.8101/

https://www.thirdsector.co.uk/two-charities-merge-form-largest-group/article/612394

yes they did, and used it to justify the PACE trial see
https://www.s4me.info/threads/action-for-me-has-joined-s4me.2944/page-14#post-60515

 

https://metrust.org.uk/the-m-e-trust-explores-merger-with-action-for-m-e/

 

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.

 

From the other thread:

I see, thank you. I find the minutes of Forward-ME meetings are often too brief to provide adequate context.

 

Forward-ME review of 2021, https://forward-me.co.uk/wp-content/uploads/2021/12/ForwardME-2021-review.pdf

 

Minutes of the Members Meeting held on Wed 12th January 2022
https://forward-me.co.uk/12th-january-2022/

 

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"?

 

"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of the Nottingham ME/CFS service, managed by @pics_primary has written to Forward-ME thanking us for highlighting the out-of-date information on their website, and advising that they have immediately removed it."

https://twitter.com/user/status/1516741294638485505

 

https://twitter.com/user/status/1516746367686881284

 

Why? Because it would get people's backs up unnecessarily, or the practicalities or? I agree there are better things to focus on.

 

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.

 

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

 

ME/CFS services in the United Kingdom?

 

Did CFS become a more popular diagnosis than ME in the UK?

 

For patients, no. Officially, since 2007's NICE guideline, the name used was CFS/ME, I'm not sure what it was prior to that. With the new guideline last year NICE now use ME/CFS. I would say that generally it would be shortened to CFS, except with patients when the tendency would be to use ME.

 

Thanks. Yes, there might be some material on that thread. I am interested in dicussion of their websites/materials/linked resources, rather than the services themselves.