Daily Telegraph: Emily Collingbridge: 'Emily didn't 'only' have ME'

[Firestormm]

23 June 2013 Daily Telegraph Health

Emily didn’t 'only’ have ME

Emily Collingbridge fought valiantly to publicise the extreme form of ME from which she died


By Naomi Whittingham

Exactly a month ago today, an inquest ruled that Emily Collingridge, an ME (myalgic encephalomyelitis) sufferer, died from the side-effects of prescription drugs she was taking to alleviate her terrible pain.

Emily had an extreme form of ME, one that is little recognised by doctors and arguably neglected in the NHS. But her death in March last year, aged 30, highlights the grim reality for those afflicted by it.

Like me, Emily had suffered from ME since childhood and we were friends for many years. We were never well enough to meet, but built a strong bond through texts, emails and letters. Her small relief from her living hell was her BlackBerry. With hands twisted by spasms and eyes that struggled to focus, she painfully typed out messages to others with ME. She worked hard to improve understanding of ME and was the author of a highly acclaimed book for those severely affected.

Click Here to read the rest of the article.

Emily Collingridge’s book, 'Severe ME/CFS: A Guide to Living’, can be bought at severeme.info

Firestormm - I didn't realise this was online and that we could click through to show them the traffic, and comment, 'like' it, etc. - would you mind editing your first post to mention that? I didn't realise the headline you've provided was clickable. Might even be an idea just to give the first few paras to force people to the Telegraph site to read it - up to you! But I think the more traffic and reaction they get to this kind of thing, the more they'll do it.

 

[sianrecovery]

Great, and heart-wrenching, article.

 

[justy]

Great article - i don't understand the headline that goes with it.

 

[Sasha]

Great article - i don't understand the headline that goes with it.

It's a confusing title - I read it first as 'She had ME but something else killed her' but having read the piece, I think it's trying to say, 'She had ME and it's not a trivial disease so shouldn't be referred to in terms of, well, it's only ME, that won't kill you'.

Yep, 10/10 for the article, 0/10 for the title.

 

[Firestormm]

Great article - i don't understand the headline that goes with it.

It's a confusing title - I read it first as 'She had ME but something else killed her' but having read the piece, I think it's trying to say, 'She had ME and it's not a trivial disease so should be referred to in terms of, well, it's only ME, that won't kill you'.

Yep, 10/10 for the article, 0/10 for the title.

From the article above:

'Her life was claimed by an illness that, at its most severe, has been compared to Aids and terminal cancer, yet which is trivialised far too often. Right to the end, Emily had to fight against the belief that she ''only’’ had ME.'

 

[maryb]

Good article - stupid title.

 

[Shell]

I think the title uses the word "only" because doctors use it dismissively. "It's only ME" means "It's nothing serious."
I am afraid I don't buy the response from the hospital. I would be utterly amazed if Jane's observations were not completely true.
It is good to see some well written articles slipping out into the open just occasionally.

 

[Sasha]

Firestormm - I didn't realise this was online and that we could click through to show them the traffic, and comment, 'like' it, etc. - would you mind editing your first post to mention that? I didn't realise the headline you've provided was clickable. Might even be an idea just to give the first few paras to force people to the Telegraph site to read it - up to you! But I think the more traffic and reaction they get to this kind of thing, the more they'll do it.

 

[Firestormm]

Firestormm - I didn't realise this was online and that we could click through to show them the traffic, and comment, 'like' it, etc. - would you mind editing your first post to mention that? I didn't realise the headline you've provided was clickable. Might even be an idea just to give the first few paras to force people to the Telegraph site to read it - up to you! But I think the more traffic and reaction they get to this kind of thing, the more they'll do it.

Done.

 

[Sasha]

Done.

Thanks! I see they've got 15 comments now.

 

[Firestormm]

Naomi (author) replied to my posting of her article on IiME Facebook page:

07 July 2013 11:00:

"Naomi WhittinghamThank you for all your comments. I just wanted to respond to a few points, something I've not been up to before now. With regard to the headline, this wasn't written by me. I understand it has caused some confusion, and agree that there is the potential for misunderstanding. However, it was taken from a sentence I wrote that also used the word 'only' in inverted commas. As others have already said, what I am saying here is that ME is a devastating, serious illness - but that it is too often dismissed as 'only' ME. Nothing to worry about, nothing serious - it's 'only' ME. The fact that Emily died proves that 'only' should never be applied to ME. This is what the headline is saying.

As for the cause of Emily's death, there was considerable discussion between me and the editor as to how to interpret the Coroner's narrative verdict. Emily's family and Dr Speight believe that she died directly from ME. I also wanted the emphasis to be on the ME, as even if side effects of prescription drugs were the immediate cause of death - and this is not proven - to my mind this is similar to people with cancer whose death is caused by the treatment, but who are still said to have died of cancer. (It is worth mentioning that the level of drugs Emily was on was less than is taken by terminal cancer patients.) The opening sentence of the article, attributing Emily's death to side effects of prescription drugs, was written by the editor. However, I feel that this is balanced out by the subheading and penultimate paragraph, both of which clearly state that she died of the illness.

I know that on the whole we have had a very rough deal from the media, but in this instance I believe the Telegraph did their best to present my article in the way I had written it. I didn't have control of the final edit and there are some aspects I would change, but it's important to remember that the editor was working within constraints of space, as well as libel laws. There was a lot of work behind the scenes concerning the latter, and significant sections of what I'd written had to be removed for this reason.

Thank you again for your comments. It's good that the article is generating discussion, and hopefully raising awareness of the terrible reality of severe ME."

 

[Shell]

Umm. I can't help wondering if the Editor wanted to downplay the fact that Emily died of ME. By trying to shift the blame to "side effects" as though there was only a secondary role at best of the disease is odd. Avoiding unwanted pressure from vested interests perhaps??
Despite the interference the article was powerful.