Expert opinion on the ‘Name Change Committee’ recommendations | 11 February 2015

[Sasha]

Very interesting compilation of experts' opinions on the ME Association website, made by Russell Fleming (thanks, Russ!):

http://www.meassociation.org.uk/201...e-committee-recommendations-11-february-2014/

 

[Snow Leopard]

Lenny Jason nails it with his comment:

Leonard Jason, a psychologist at DePaul University in Chicago, expects that patient advocacy groups will find fault with the new name, feeling that they were not adequately consulted. “As a community psychiatrist who values citizen participation in critical decisions, I think this was a strategic mistake,” he says.

 

[*GG*]

Interesting debate. Seems like it would do more good than harm in the short term at least. What are other people's thoughts?

I had the 2 day in a row exercise testing done and was shown to be impacted quit a bit, so it would seem I fit the criteria?

GG

 

[Sasha]

I welcome the report and the acknowledgement of the severity of the disease, and that it's not psychological, and that CBT/GET are useless and that, by definition, exertion makes it worse: and the call for more funding. I think all that's great.

I'd like to see consultation with patients before any new name is rolled out, and some actual engagement with patients - some to-and-fro about why certain terms, such as 'neuro-immune', might or might not be within scope. PR would be a great place to host such a thing.

I don't know if it's too late for that: I don't understand the process.

 

[Iquitos]

I welcome the report and the acknowledgement of the severity of the disease, and that it's not psychological, and that CBT/GET are useless and that, by definition, exertion makes it worse: and the call for more funding. I think all that's great.

I'd like to see consultation with patients before any new name is rolled out, and some actual engagement with patients - some to-and-fro about why certain terms, such as 'neuro-immune', might or might not be within scope. PR would be a great place to host such a thing.

I don't know if it's too late for that: I don't understand the process.

Well, it's being called a "draft." Maybe some of it can still be changed. I agree there is some good stuff in it but the name change is probably not a good one.

On the other hand, I'm seeing write-ups in the major mainstream media, more attention than this disease has had in decades. So maybe even the clumsy name is having a positive affect. Getting rid of the f-word is a step in the right direction.

And they do recommend a review of the criteria within 5 years.

 

[Sasha]

Well, it's being called a "draft." Maybe some of it can still be changed. I agree there is some good stuff in it but the name change is probably not a good one.

On the other hand, I'm seeing write-ups in the major mainstream media, more attention than this disease has had in decades. So maybe even the clumsy name is having a positive affect. Getting rid of the f-word is a step in the right direction.

And they do recommend a review of the criteria within 5 years.

I saw on the contents list that they had a dissemination strategy - I wonder if they did a really good job of lining up the media. If so, it's really paid off!

Not seeing much in the UK - presumably they didn't bother targeting places outside the US.