“Singing in a fat suit left me so ill I could hardly walk…” Michael Crawford talks to The Mail on Sunday

January 16, 2011

From The Mail on Sunday, 16 January 2011 (Story by Michael Crawford as told to Daphne Lockyer)

In a long interview with a Daily Mail reporter, the actor Michael Crawford describes his return to the West End stage after six years to join the new production of ‘The Wizard of Oz' and his encounter with ME:

When the curtain rises on the first night of Andrew Lloyd Webber's new production The Wizard Of Oz, there will be no one more bewitched and beguiled by the magic of theatre and of finding themselves on stage once more than the actor playing the Wizard himself. That's yours truly, of course.

Six years ago, even a magic wand and a book of spells would not have been enough to get me back on my feet and appearing once more at the London Palladium, a theatre that holds so many wonderful memories for me.

At that time, I had just left another of Andrew's productions, The Woman In White, due to ill health. For four months I had played the obese Count Fosco in a fat suit: a costume that had been my own clever idea. Unfortunately.

Night after night on stage, the suit meant that I'd sweat profusely, to the point where I was losing all the essential minerals and nutrients from my body. In January 2005, I went into a kind of physical meltdown. I collapsed with what I thought was flu, but it turned out to be something much more difficult to diagnose.

Teams of doctors were called in to try to find out why I was so completely exhausted, depleted and unable to return to work. I had brain and body scans, and virtually every test known to man before eventually discovering that I was suffering from the post-viral condition myalgic encephalopathy (ME).

Read more: http://www.dailymail.co.uk/femail/article-1347273/Michael-Crawford-long-awaited-return-stage.html#ixzz1BDNe0up3

18 thoughts on ““Singing in a fat suit left me so ill I could hardly walk…” Michael Crawford talks to The Mail on Sunday”

  1. This is the first I’d heard of Michael Crawford having had ME. The first thing you do when you get any illness is research it, and he must know the lack of belief that has gone on and all the shenanigans. I think only good things of Michael Crawford, recalling seventies and the stitcom ‘Some Mothers Do Ave Em..’ and I am glad he is better – if indeed he had ME and not a shorter term post viral/burn-out syndrome – but I can’t help feeling it’s a shame that someone so high profile wasn’t doing more to highlight the devastation of the illness. Apologies to him if he has and I just haven’t been aware.

  2. I think that this is a ‘good thing’ and by that I mean actually returning to the stage – in a limited capacity ‘paced’ we might say – and having the courage to state his diagnosis was ME.

    Six years he suffered. It might prove a ‘remittance’. Been there done that – learned from the experiences.

    Fair play to the man.

    Any speculation as to ‘what he might have really had’ is undeserving and disengenuous. In my view.

    The ME/CFS ‘community’ are as divisive among themselves as the outside world is about ME. If ‘we’ cannot unite then we will never get anywhere near the goal of acceptance, understanding and MORE MONEY SPENT ON RESEARCH!

    All in my own humble opinion and not directed at your comment in any way NMJ.

  3. “The ME/CFS ‘community’ are as divisive among themselves as the outside world is about ME. If ‘we’ cannot unite then we will never get anywhere near the goal of acceptance, understanding and MORE MONEY SPENT ON RESEARCH!”

    You’re right on the money, Firestormm, but we cannot ignore the very important fact that people are being diagnosed with ME who don’t have it, thus muddying the waters and perpetuating negative images of the illness. I am so tired reading vacuous blog accounts by those claiming to have ME, who clearly don’t, but have the much more nebulous CFS, and unfortunately, when I read about a celebrity who has ME, I treat the news, at first, with suspicion.

    Crawford has clearly been very ill, and maybe in fact he has wanted to suppress details, that is his prerogative. But he has also made a very good, quite fast recovery, if what we read is true, it all seems rather utopian. Go to New Zealand, sail and fish and build an orchard and now he is well again.

    When there is so much controversy and misinformation, it would be great if the Michael Crawfords with ME would speak out about the need for robust biomedical research. But if he has recovered to the extent he has, maybe he just doesn’t get how catastrophic it is for those who are not so lucky?

    Obviously I can’t know if Crawford has the illness that I understand as ME, I have not heard him talk about it, only read the DM article, of which his ME is a tiny part. And none of it would matter if ME had an incontrovertible, undeniable status as a neuroimmune illness, but sadly it doesn’t, there are still dangerous powerful medics denying it and people running round the internet carelessly saying they have ME when they don’t…

    And I think worth pointing out it is not just patients who are divisive, but the medical/scientific research community too. Look at the furore over XMRV!

  4. I was never diagnosed with the term ME but CFS and that was 12 years ago now.

    Not that I take offence personally from people who believe themselves to have some more legitimate form of what currently is no different in terms of severity, symptoms, duration, or ‘treatment’.

    I would though like to hear more from those claiming their ‘ME’ is more ‘real’ that those others misdiagnosed with CFS etc. are not some sort of different species undeserving of their consideration.

    Until ‘ME’ or those suffering and believing that their particular diagnosis is spot on can be clearly identified and definitively seperated from us other mere mortals – I do wish they would back off from an argument that at this moment in time is pointless.

    If XMRV turned out to be causitive. What do you think would be the effect on the population of ME Sufferers who were NOT XMRV positive? Where next would they seek vindication?

    We are all ill. Severely so. We all share some things in common. The powers that be have here and in the states for reasons I will not repeat decided to lump us all in together with the banner or label Chronic Fatigue Syndrome.

    This is what appears on my sick notes, my medical reports and my other documentation. For others’ it is ME. Others’ ME/CFS. Others’ PVFS… etc. etc.

  5. Firestormm, You are surely missing the point. I am referring to the Wessely-psychiatrist-defined CFS – perhaps I should have been clearer – which does not describe my illness. Still, I apologise that I was diagnosed in 1983 with ME, when the term CFS had yet been coined, and that you find this offensive.

    And I have made no reference to XMRV – whether I am XMRV positive or not – I have not been tested – is quite honestly meaningless to me. I have not yet been carried away by the almost religious-like fervour that has been whipped up, though I am delighted WPI is doing decent, honest, biomedical research.

    Neither did I say people with Wessely-defined CFS were not ill, or CFS was not real. My point is, IT IS NOT THE SAME illness.

    (But that is only my experience after 28 years of illness. I could be wrong. Maybe I should just rejoice at every person who claims they have ME and have recovered?)

    We could change the name of ME to ABC – there will still be people being diagnosed with ABC, who don’t actually have it. The criteria are so unstable and shift, depending on who you are talking to.

  6. Sorry, I did make a reference to XMRV in my first comment, what I meant in my second was that I had made no reference in terms of it being the truth of what defines ME. I have no idea where the XMRV story will go, but with or without it I have M.E

    One last point though: why is that celebrities with ME always seem to have recovered from it, they don’t still have it – as a lot of us do? Where are the celebs who are still struggling day to day?

    1. Thank you for replying MMJ. It was never a criticism of you personally. Just frustration. I do believe though that all this will get ‘us’ nowhere really. Infighting is never a good thing.

      But you are right. Many of us are probably not suffering from the causitive effect of any ‘one thing’.

      In regard to your last paragraph. I couldn’t agree more. But if I may relate ‘their’ position to my own:

      I was ever reluctant – hostile even – in the early years to accept or talk about let alone publish the diagnosis of my illness.

      Who would want to even now? Also there is the question about actually when all the tests etc. end and a confirmed diagnosis takes place. That could take a while. And acceptance even longer.

      Public perception – as ever though I think less so now – plays an important part in a celebrities decision to ‘go public’.

  7. Firstly sorry for the long post.

    It’s a shame we aren’t all singing from the same hymn sheet where ME is concerned. Who are we to criticise what Michael has been through and suggest it’s anything but ME? 

    I have always been told that the term ME is an “umbrella” for a variety of illnesses closely linked including CFS and PVFS. They all vary in their severity and no two cases are ever exactly alike. Some maybe mild compared with the severity of others. 

    I was diagnosed with CFS in 2009 and am now in the process of recovering by (as mentioned above) “pacing” myself. I was fortunate, as I had early diagnosis with a sympathetic doctor who listened to my concerns. I am currently training to run a half marathon in 3 months time, something I’ve been training for since November. But at my worst I couldn’t get out of bed, I was in agony, even trying to drink a glass of water hurt. It lasted a year and still today I get the odd day where I suffer.

    Since starting my blog I’ve spoken to lots of people with similar symptoms. Do they not have a form of ME either? I’m trying my hardest to raise awareness of the illness and believe any publicity is good news for sufferers and I honestly think Michaels frank and honest view of what appears to be PVFS/CFS can only help change peoples perceptions of the illness, which I’ve experienced to be negative and ill-informed and if I’m honest, down right rude! I’ve experienced this discrimination first hand and I’m sure many others have too.

    So I’m a strong believer that we should all unite, and change peoples opinions on this life changing illness. 

    Ps can you imagine if I had to explain to people I had CFS and what it is everytime I was asked about it? I think ME is a good general term for the illness on a basic level.  

    -Emily runningforme2011.wordpress.com

    1. Emily,

      With due respect – what an excellent post.

      Also regarding the marathon effort: I think it is brilliant. Well done you.

  8. Emily, With due respect, your blog will attract readers who share similar experiences, but it doesn’t really prove anything. And I am very well aware there are different severities of ME, that is not my point.

    My point is – & I am hardly the first to make it – the two illnesses have been conflated, one is a serious neuro-immune illness, which you can still have mildly or moderately, the other is poorly defined, pretty much a ‘dustbin diagnosis’, for anything that has idiopathic fatigue as its main symptom.

    Also, doctors have also been discouraged from using the term ME for well known political reasons, which I am not re-hashing here, and that is perhaps why you and Firestormm were diagnosed with the CFS label.

    So we have people with ME being diagnosed with CFS, and people with CFS being diagnosed with ME. It is a mess.

    You have made a good recovery, and your marathon training suggests you no longer have the damaged muscle function that PWME have.

    Still, my gut feeling is that even those who have had milder ME, will know the horror and will understand the importance of nomenclature. Those who have CFS won’t really care, why should they, they seem to get better soner rather than later – but if they had an inkling of the illness that is ME they might be more inclined to care.

    And ME is not an umbrella term, it is a discrete neuro illness. CFS is on the other hand is a very handy umbrella term for the psychiatric lobby.

    You are right, M Crawford no doubt went through his own hell and it is not for me to criticise his experience of illness or diminish it, but I am very much entitled to challenge whether he has had neuro ME or not. I am just being honest in my reaction to reading about a celebrity having ME (I did not know you could get it from sweating too much, losing nutrients,). And I doubt very much at all the public perception on ME has changed, reading this Daily Mail article.

    Oh and can you imagine what it was like explaining what ME was in the 8os when there was a paucity of information?

    1. NMJ.

      ‘And ME is not an umbrella term, it is a discrete neuro illness. CFS is on the other hand is a very handy umbrella term for the psychiatric lobby.’

      Biased and well quite frankly rubbish.

      If ME was so easily defined and recognised and even – heaven’s forbid – treatable; it would have been!

      My ‘diagnosis’ of CFS began in a country other than this one. Was re-confirmed in this one then in another and then back here at least six times.

      On no ocassion did the practitioner – private or NHS – adhere to the label ME. Each and every one determined that ‘ME’ was not a suitable definition although I had ME symptoms and history.

      There is no ‘test’ for ME. Nothing – frankly – to tell it apart from anyone diagnosed with CFS other than symptom history and patient experience.

      You can’t even say any two people with ‘ME’ have the same symtoms or results from the same tests or investigations.

      Until ‘we’ can – and I hope we can but only if it is proven and results in a proper treatment – then ‘we’ should stop arguing and unite.

      What of those people in this country and in the USA whose diagnosis like mine appears on their sick notes and medical reports as CFS from the get-go?

      It is those like yourself once subjected to the hardly adequate or medically provable label of ME that are now faced with the label of CFS being more widely used by the likes of the CDC and included in descriptors by others; that have an ‘issue’.

      The ‘label’ is not important. I would strongly argue that united ‘we’ stand a much better chance of gaining a greater understanding and more research funding than we would be would be divided.

      NMJ None of this is directed at you personally. It is simply that you are the only one here – as you say.

      Hopefully others will come along and this can be discussed further.

      I do ‘get’ the passion and belief with those who feel their illness has become somehow ‘diluted’.

      Even with my diagnosis or suggested diagnoses by doctors of CFS in the 1990’s the only resource open to me was Dr Shepherd’s book ‘Living With ME’. There is a ‘blurring’ of labels. There was then and there may well be now.

      But is anyone today actually diagnosed with ME instead of CFS? Is there something that doctors determine seperates the two?

      I doubt it. Haven’t been able to find one in over 15 years even when ME was more preferred. But I am always open to direction.

  9. Firestormm, I’m not talking about other countries’ definitions, I would have thought that was blindingly obvious. I’m speaking about the UK. You also did not make it clear you initially were not diagnosed in the UK, which was frankly misleading. I guess you are referring to USA? (I was there periodically in early-mid nineties and no one I spoke to had heard of ME. Yes, they used the term CFS or CFIDS. And I was told by a Stanford professor ME was psychosomatic).

    Still, I can only assume you are fine with the Wessely-led ‘CFS’ science here in the UK that has gone on since the nineties and led to so much despair and damage. You cannot simply sweep under the carpet the ‘CFS’ labelling issue because you want us all to be in a big happy clappy international group. That just isn’t the reality. Maybe you, me, Michael C and Emily all have the same illness, different severeties. Maybe not. We cannot know until the criteria are universal. Anyway, I really don’t want to waste any more energy on this. These exchanges really do leave me upset and frazzled, so we will have to agree to differ. You seem intent on ignoring my 28 years of illness, like it counts for nothing, the way the politics of this illness have unfolded here. I was diagnosed by a consultant neurologist but now my illness is literally in the hands of a bunch of CFS neuropsychiatrists.

    And I too hate for comment threads to get personal, it is pointless and counterproductive. At the end of the day we can only know our own illness, and I know I do not have CFS as defined by Wessely/Oxford criteria bla bla bla. The book I read when I got ill was by Dr Melvin Ramsay. You should read it. His clinical definition of ME is far more accurate than the wide net of the Oxford definition on CFS.

  10. Would like to add that while we are unhappy in the UK the way the term CFS has been used by psychiatrists to delegitimise the seriousness of ME, I also know that many in USA are unhappy with the term CFS. Maybe you should watch this short video clip from the recent very moving blog post of a severely ill young American woman.


    I suggest you read the subtitles carefully, when it comes to the explanation of the name CFS. This occurs the first few secs in.

    Okay, I’m done here.

  11. The naming of this illness is important, but most important is the criteria for diagnosis. We need to know what we are talking about after all! Research may be compromised by including people that don’t share the same illness. I’m sorry if anyone finds this offensive but trying to unite different things under one banner is counterproductive for all. I know of someone who got diagnosed with CFS after a car accident! They have ‘recovered’ and now i am unfairly compared with them. It’s almost like i don’t want to recover… well so i’m told.

  12. There is a very clear way to distinguish between the neurological illness and the “dustbin diagnosis”.

    The dustbin diagnosis is new onset of fatigue which has lasted for 6 months.

    The neurological illness can be defined by the Canadian and Fukada criterias.

    What I don’t get is why GP’s don’t know this?
    What don’t GP’s even know to ask about post exertional malaise?

    If a patient does not have post exertional malaise then it is not the neurological illness we define as “ME”.

  13. Firestormm, I just want to thank you for your latest comment. I know it is emotive, a minefield for all of us. Hopefully, we can all agree that universal criteria are the nub, the way ahead – and we can’t get decent research done until we know what illness is actually being researched. The black comedy of the PACE trials represents that very well.

    Just as a by the way I am finding the layout here, the indented comments that appear, quite hard to follow! – I can’t work out what was added when from earlier in conversation. Emily, I also wanted to say, it is great you are running the marathon for ME, and I also hope you can now understand why it is so important to distinguish between the terms CFS and ME in the UK, at least, and establish universal criteria. I would personally opt for the Canadian guidelines.

  14. We shouldn’t have expectations of Michael Crawford just because he’s a celeb. Like a lot of us, he may have been too ill to be an advocate for the ME,CFS community. It’s good to hear he’s in remission! It may be outside of some peoples’ awareness, but profuse sweating not only causes dehydration, but also a loss of electrolytes that can cause collapse and needs urgent medical attention in hospital.

    I think it’s doing people a disservice when people make unfair assumptions about another person’s illness and disability experience, when we are not in possession of all the facts, or hardly any of them for that matter. It’s very prejudicial and what right do we have to do this, and if we choose to do so, then we should have no objections when other people do the same to us.

    ME can be diagnosed from a spect scan, but it’s a lot cheaper to make the illness disappear instead. I have a diagnosis of both ME and CFS, although the CFS label excludes most of my symptoms and does not describe my illness experience. I could fit my mother into the Fukuda CFS label, but she had Crohn’s disease, not CFS. It really is downright dangerous to your health to own a CFS label in the UK.

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