Monday, 17 January 2011

M.E. is not the same as CFS

Michael Crawford is the latest in a list of celebrities, said to have acquired M.E...' Wise words from Dr Greensmith via Dr Speedy.

I used to love Michael Crawford in Some Mothers Do 'Ave 'Em and I must say I didn't know he'd had ME and was now better, about to resume performing. He thinks he got it from lack of nutrients, sweating too much in his fat suit on stage... I don't wish to 'diminish' his illness but maybe it is the case he had a more benign post-viral syndrome, or was simply burnt out from a brutal work regime? I wonder who diagnosed him, what were their criteria? I would also not mind having the kind of M.E, where 'you feel okay for a few hours a day' (wilting by 4pm), then 'take yourself off to New Zealand' and build an orchard and go sailing and fishing. This is not to be mean to Michael, he has clearly been ill and I wish him well. But he has, perhaps, been diagnosed by murky diagnosers. (They couldn't find anything else serious, so they gave him M.E.) And I can't help thinking it's a shame he hasn't done more to highlight the devastation of the illness, given his very high profile (if he has then I am unaware and apologise).

It is important to note that living a stress-free life does not conquer neuro-immune M.E. I fear articles like this are really in danger of taking us back to the 'yuppie flu' days.

Update* Perhaps it is wrong on my part to feel so suspicious when celebrities reveal they have ME, but they always seem to have had it, they don't go on having it, that's why I wonder if it's more severe exhaustion from overworking (apparently Mike Skinner from The Streets has had ME too. Yup.). And as I have said before I am just so tired of those - not celebrities, other bloggers - running round the internet vacuously claiming to have ME when they clearly have the more nebulous Wessely-defined CFS. Speaking of Simon, here is an interesting post on UK research and 'fraud'.


Firestormm said...

Hi nmj.

You know we are not worlds apart on this. When I 'broke' the story on Foggy Friends I also met with comments from some that his illness was 'not ME'. But from some there was no consideration that he might in fact with all his wealth been able to see the best physicians perhaps or that it had taken a while for a diagnosis to be reached while all else was excluded.

Six years I believe he was 'ill' and unable to work. Six years of not being able to continue his career.

I don't know the man personally. I don't know whether or not his ME diagnosis is the same as mine - though in my case 'they' preferred the 'label' CFS.

For over 12 years - not as long as some - I have had CFS. But there have been times when I have been able to do things. College, University, Working with kids, holiday in Turkey...

If I had wealth then maybe I would have gone to New Zealand.

I guess if he had been told his label was CFS and used that in the interview people would have been more prepared to accept his illness as more legitimate.

The use of the term ME does really cause concern among other sufferers on a scale more than ever I expected.

If I was so inclined I guess than I would pursue a claim that my label of CFS was wrong and that ME better defined my illness.

But I don't. I do not think it necessary at the moment in time neither has it been for the 12 years of my illness.

That saying 'What's in a name?' well maybe there is more than I thought...

Apologies for any previous unintended offence by my presence here or in response to your comments on the MEA.

Fire x

nmj said...

Hey Firestormm, As I said above, your apology is accepted and you are always welcome to comment here as long as you remain civil, no matter how much you disagree with what I say. We have a clean slate.

In my comments here and over at MEA I was only being honest and expressing my reaction to reading about a celeb with ME - the reasons are explicitly to do with the way ME has been stolen and hijacked by the Wessely crowd in UK. I have no bad thoughts about M Crawford, it's more that the language and tone of the article suggest to me more of a CFS-type illness. Also, the article is actually very little about ME, more about his career.

So, it's not even going to NZ, he can go wherever he likes! It's the tone, it all seemed quite effortless, but maybe he was much better by the time he actually travelled there. Am sure he did have access to best medical people, and yes, wealth can only make any illness a bit 'easier' to bear. And I am not saying he doesn't/didn't have ME. I can't know - but I can ask questions.

Do you remember Cher apparently had CFS in nineties? Has she done much to spread awareness of the illness in USA? Maybe she has and I am unaware. Both these people are in positions to give the illness massive profile (I accept ME is widely known as CFS in USA), but they haven't. Why is that? The rest of us spend our lives - using precious energy and resources - campaigning for biomedical research and to be treated with respect. Celebrities with our illness should be doing the same.

Also, sailing and fishing and building orchards take a lot of energy in my book, even if he was not actually working on stage! If I potter in the garden, I am done in afterwards. This is not to complain, this is merely to say this is the life of someone with ME after 28 years.

Maybe, of course, if I had not fought against my illness in 80s I would be much better by now, but I can never know that. You cannot know how little info there was back then! But neither do I grudge people who do make goodish recoveries, I am happy for them and if you knew me you would know that!

If anyone wants to read the MEA thread it is here. Don't want to repeat myself, I am really beginning to bore myself!