20-signatory letter in Daily Telegraph today calling for biomedical research into ME

[Sasha]

On the MEA website today:

Saturday, 06 February 2010 07:54
A joint letter appealing for the nation to start taking ME seriously appears in The Daily Telegraph today. It is signed by 20 leading figures in the ME debate including parliamentarians, clinicians, researchers and figures from the ME national organisations and patient support groups.

Breaking the ME enigma

SIR The death of Lynn Gilderdale and the humane verdict in the trial of her mother brought home to many people for the first time what a devastating illness myalgic encephalomyelitis (ME) can be.

Many of the estimated quarter of a million people with ME in Britain experience not only extreme pain and disability, but also incomprehension, ignorance, lack of sympathy and at times outright hostility, not only from the public but also from professionals responsible for their care.

Such lack of understanding even extends to blaming parents for the severity of their childs illness.

It is time the nation began to take ME seriously. Provision of adequate clinical and other services by properly informed and sympathetic professionals is currently subject to a postcode lottery. Such provision should avoid inappropriate treatments, and range from support for home tuition for school-age children to respite care for the severely affected.

Above all, we should fund biomedical research to resolve the enigma of the underlying pathology of this illness. We should build on recent scientific advances to develop effective treatments, so that no one in future need experience the pain, isolation and despair that were Lynn Gilderdales fate.

Countess of Mar
Secretary, All Party Parliamentary Group on ME
Dr Neil Abbot
Operations Director, ME Research UK
Jane Colby
Executive Director, The Young ME Sufferers Trust
Anne Faulkner
Hon Director, CFS Research Foundation
Tanya Harrison
Chairman, BRAME
Malcolm Hooper
Emeritus Professor of Medicinal Chemistry, University of Sunderland
Andy Kerr MSP
Dr Jonathan Kerr
Consultant Senior Lecturer, St Georges, University of London
Simon Lawrence
Chairman, 25 per cent ME Group
Kathleen McCall
Chairman, Invest in ME
Dr Luis Nacul
Consultant in Public Health, London School of Hygiene and Tropical Medicine
Professor Derek Pheby
National ME/CFS Observatory
Neil Riley
Chairman, ME Association
Dr Charles Shepherd
Dr Nigel Speight
Sir Peter Spencer
Chief Executive Officer, Action for ME
Des Turner MP
Chairman, All Party Parliamentary Group on ME
Dr William Weir
Mary-Jane Willows
Chief Executive Officer, Association of Young People with ME
Andrew Stunell MP
Vice Chairman, All Party Parliamentary Group for ME/CFS

 

[sproggle]

Thanks Sasha!

On the MEA website today:

Saturday, 06 February 2010 07:54

A joint letter appealing for the nation to start taking ME seriously appears in The Daily Telegraph today. It is signed by 20 leading figures in the ME debate including parliamentarians, clinicians, researchers and figures from the ME national organisations and patient support groups.

Breaking the ME enigma

SIR The death of Lynn Gilderdale and the humane verdict in the trial of her mother brought home to many people for the first time what a devastating illness myalgic encephalomyelitis (ME) can be.

Many of the estimated quarter of a million people with ME in Britain experience not only extreme pain and disability, but also incomprehension, ignorance, lack of sympathy and at times outright hostility, not only from the public but also from professionals responsible for their care.

Such lack of understanding even extends to blaming parents for the severity of their childs illness.

It is time the nation began to take ME seriously. Provision of adequate clinical and other services by properly informed and sympathetic professionals is currently subject to a postcode lottery. Such provision should avoid inappropriate treatments, and range from support for home tuition for school-age children to respite care for the severely affected.

:Retro smile: Thanks so much for this link it's really brightened my morning :Retro smile:
Great letter from ME advocates in the UK and in a national news paper too!

Jan xx

 

[Min]

Oh that's brilliant, I shall email the Countess to thank her - she takes far to much stick .

 

[Nina]

This seems to be Lynn's legacy to us. I only wish she would have lived to see this, and much more to see people act on it.

 

[V99]

Here is the link:

http://www.telegraph.co.uk/comment/letters/7168531/Remarkable-reluctance-of-MPs-to-accept-responsibility-for-their-actions-in-claiming-expenses.html



If you wish to contact the telegraph in support of this letter, here is the webpage:

http://www.telegraph.co.uk/topics/about-us/3489870/Contact-us.html?/

 

[Adam]

This seems to be Lynn's legacy to us. I only wish she would have lived to see this, and much more to see people act on it.

Lynn's legacy is incredibly evocative. Hopefully one day someone will write, sing, produce a work of art and dedicate it to her and call it simply Lynn's Legacy.

 

[thefreeprisoner]

[WILD CHEERING]

Woop!!! This is great news!

Rachel xx

 

[Dolphin]

It's a great letter.

But, to nit-pick, I don't think ME is a great example of a condition with a post-code lottery. Where are the good centres? Some places don't have CBT/GET services but some might consider that a blessing (harder for the DWP etc to force you to have to do a course, etc).

 

[thefreeprisoner]

Actually, there are some GPs in the UK willing to experiment and not necessarily toe the line re CBT/GET. A friend of mine recommended one to me, and I know Adam here has had good fortune. Will try to get an appointment and report back...

Rachel xx

 

[Sing]

Yes! This is great-- My only addition is that, if I remember correctly, The Daily Telegraph is the paper in Britain that the ruling class reads. If so, this is even better!

Sing

 

[thefreeprisoner]

I dunno - it's the paper in Britain that the extreme right-wing read, and the fox-hunting toffs, that's for sure.

Unfortunately most of the ruling class (bankers and such) read the Financial Times, as far as I can tell. Most people who work in the media read the Guardian (graaaghhhhh, I really respected them until I got ME).

I think the story could be put across in terms of a financial angle (ME sufferers, WPI + Big Pharma vs the Insurance industry and the UK Govt) that the FT would be very interested in.

I so wish we had some PR people around this forum...

Rachel xx

 

[Sing]

Thanks Rachel, for your explanation about the British newspapers, the English ones anyway. (What does "toffs" mean? I have always wanted to know. I understand the reference but not the word.)

You are right, that the more we can focus stories, petitions, letters, articles or whatever, FOR the correct media outlet, the better off we will be in terms of a campaign.

Sing

 

[thefreeprisoner]

(What does "toffs" mean? I have always wanted to know. I understand the reference but not the word.)

I looked it up:
Wikipedia entry for Toff

and now feel a bit embarrassed about using it... but there you go, Wikipedia provides a really good explanation -- better than I could do.

Rachel xx

 

[V99]

As in toft of toft hall.

 

[Sing]

Thanks, Rachel, and also V99 for your humor! I think both the British and Canadians excel in humor. What a gift!

Wishing my brain were a little more agile so I could add some humor too, but all I can do is to enjoy that of others.

Sing

 

[Abraxas]

Toff is short for toffee nosed - see below for some suggestions as to the origin:
http://www.smh.com.au/news/big-ques...-as-toffeenosed/2006/08/17/1155407946146.html

Why are wealthy people known as "toffee-nosed"?

Because they have bags of lolly.
Arthur Gray, Wentworth Falls

Obviously they are toffee-nosed because they spent a lot of time with their nose in the honey pot.
John Campbell, Cordeaux Heights

After taking their expensive snuff, wealthy people in the old days developed an unsightly brown drip from their noses which looked like toffee.
Pamela Lewis, Avalon

Wealthy types of the 19th century were known as toffs, who turned up their "toff noses" at the lower classes. The rest is history.
Jim Dewar, North Gosford

According to ``Beau Brumell: The Ultimate Dandy'' by Ian Kelly, ``toff'' and ``toffee-nosed'' refer to the disgusting brown drips from a gent's nose after taking snuff.
Paul Roberts, Lake Cathie

How else will a toff become stuck up?
David Ash, Bondi

``Toffee-nose'' is what the urchins on this side of the street called out to those children on the other who could afford lollipops and toffee-apples from the confectionery shop.
J. Barrie Brown. Gordon.

There are theories that "toffee-nosed" (or "toff", and meaning snobbish; pretentiously superior) comes from "tuft" - a gold tassel on a cap worn by titled student at Oxford University. But more credibly - if less tastefully - the origin appears to derive from the unsightly brown droplets that dripped from a gentleman's nose after taking snuff - which of course was only taken by the "upper class". (Ref: Sue Arnold's book Beau Brummell: The Ultimate Dandy [2006])
John Moir, Mollymook.

Sorry - getting off topic :worried:

 

[Sing]

Toff

Hey, I found what could be the origin of toff--It is etoffe, the French word for "quality", also worth, stuff, fabric or material.
I've been noticing lately how a number of words in English which I never knew the basis for turn out to be French words. I never think of the French as having "been there first", being Anglophile by heritage, but sometimes they have.

Also remember reading in the English mystery writer, Margary Allingham, her Cockney assistant character, Lugg, to the noble sleuth, Albert, call the upper class, "the quality". So that fits with etoffe too.

Better late than never.

Sing