Action for ME - New sponsor - The Haywoods group

"Haywoods Are Proud To Support Action for M.E.
March 06/The Haywoods Group

We are delighted and proud to announce that we are supporting Action for M.E., a charity founded to tackle the misconceptions of this misunderstood illness, and to support those who suffer from it.

In the words of the charity itself, “Imagine having months off from work because you are so ill, so pole-axed by fatigue and pain, that you are no longer able to tell the time when you look at the face of a clock. Imagine you can no longer read even the shortest paragraph because your power of concentration is reduced to zero.

That is the experience of many thousands of people with the chronic neurological condition myalgic encephalomyelitis (M.E.), sometimes diagnosed as chronic fatigue syndrome (CFS, or M.E./CFS), which affects around 250,000 people in the UK, and 17 million worldwide.”

We were pleased to attend a recent event held by Action for M.E. at No. 10 Downing Street, and to learn more about this wonderful organisation which provides information and support to sufferers of M.E., works with policy makers and parliamentarians on decisions that may affect M.E. sufferers, and funds research to bring more money, people and solutions into the field."

http://haywoodsgroup.com/sponsors-a...al&utm_source=twitter.com&utm_campaign=buffer

@Action for M.E.

 

Good grief what a load of baloney!

 

Has anyone suggested to AfME that they might want to stop using Oxford criteria to describe ME?

 

That actually made me snort with laughter! (I know. I do have a weird sense of humour)

 

Perhaps they've confused tackling with embracing? It certainly could get awkward in the wrong situations.

 

I live in a farce. This is the third time I've wanted to say that today reading on this forum, and now I'm saying it.

eta - minus the swearing

 

What is this bit on about ...

 

"a charity founded to tackle the misconceptions of this misunderstood illness, and to support those who suffer from it"

To be fair to the original founder Sue Finlay it was set up with good intentions:

Originally set up as the M.E. Action Campaign c 1987, then (ironically) just ME Action, registered as a charity in Scotland.
see also Martin Lev
http://me-pedia.org/wiki/Martin_Lev

The charity relaunched itself as Action for ME and Chronic Fatigue in 1993 (dropping chronic fatigue after uproar from members).
What happened afterwards.......well

 

The Haywoods Group is a family-owned, residential development business. For over 20 years, we have delivered homes and investment opportunities for savvy residential property purchasers, forming the link between the developer and buyer.

Hob-nobbing at No 10 as well

It all seems pretty creepy

I would have thought they funded research to try to help people with the illness but I suppose that does not come in this sort of radar.

 

The original MEAction was very good.

 

Unless it's referring to this:

https://www.actionforme.org.uk/news/families-affected-by-me-attend-downing-street/

 

"accompanied by Mary-Jane Willows" formerly of AYME who were asked to leave the Forward ME Group, had EC as their medical adviser.........etc etc

 

newcomers might want to know that afme did things like support pace.

newcomers might want to know that meaction.net is 100% unrelated.

 

It's been a while now. He's a description by Prof Malcolm Hooper on a talk by Chris Clarke in 2001

"
Address by Chris Clark Chief Executive of Action for ME - Aug 15th 2001

...

He was quite happy with the confusions surrounding the use of both ME and Chronic Fatigue Syndrome, CFS, and insisted that there was no value in debating the best term to describe ME. The use of ME, CFS, CFS-ME, ME/CFS seemed to him to be a matter of choice and of no great significance. The terms could be used interchangeably.

"

 

Whilst I think it's generally accepted that Oxford is obsolete , there is still a problem agreeing a criteria for research. Fukada isn't great either and there is a lot of research using this one too.

 

http://me-pedia.org/wiki/Action_for_ME