Coffee House

John Rutter – M.E. is real. I know, I had it for seven years

22 March 2014

2:36 PM

22 March 2014

2:36 PM

Rod Liddle may or may not be right that certain illnesses become fashionable once given a name and are illusory, as he wrote last week. But ME — myalgic encephalomyelitis, alias post-viral fatigue syndrome or yuppie flu, is not one of them. It’s an unpleasant physical illness: it ruined seven years of my life. It probably takes a number of forms, but in my case it started with chicken pox, caught off my infant son. I seemed to make a complete recovery until a year later, when I began to experience unpleasant symptoms. These included abnormal sensitivity to sound and light, violently inflamed eyes and blisters around the head and upper body. There was also nominal aphasia (problems recalling words). This is because the surfaces of the brain are inflamed. The mental fuzziness is compounded because the body can no longer process yeast properly.

Like malaria, it cycles on and off, and after an attack, which might last a few days, I felt terrible. I would have a week or two feeling OK, then the cycle would begin again. I’m a professional musician, and we tend not to advertise our ailments any more than journalists do, but this was real. In the end, with an anti-yeast drug and a strict diet, the attacks grew milder and less frequent and life returned to ‘normal within limits’, but the memory remains of an awful period that was caused by a virus (identifiable by a blood test).


Sorry to spoil a good polemic with facts that don’t fit.

John Rutter is a composer and conductor. This is his letter to The Spectator, printed in the current issue.

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Show comments
  • Linda

    I had it – it is all too real. Anyone who can recover, to any degree, is blessed indeed. I agree – the memory lingers, but life is even sweeter when some form of normalcy returns. Mr. Rutter is one of your National Treasures, whose music has brought us great joy in the US as well. Giving thanks that he has regained a measure of health!

  • Ted Lewis

    ME stands for myalgic encephalomyelitis: the meaning of these two words is: “painful inflammation of the brain and spinal cord.” It is therefore, by definition, a neurological illness.

    But neurologists do not treat ME. The NHS does not treat any neurological illness by the name of ME.

    What the NHS treats is condition it is pleased call “CFSME”. At “CFSME Fatigue Centres (sic)”, patients receive two kinds of psychotherapy and antidepressants. The flagship “CFSME” Centre, at Barts Hospital London, is run by a psychiatrist, Prof Peter White.

    ME patients therefore complain a lot; to the general public they seemingly have treatment (but actually don’t); as such, they are fair game for comedians and doubting Thomases.

    The clearest and best definition of myalgic encephalomyelitis is by Canada’s Dr Byron Hyde:

    For an informed discussion of this illness I would suggest that it is required reading.

  • Joanne Drayson

    ME is clearly complex and according to World renown Virologist Dr Ian Lipkin at last weeks ME/CFS Stanford conference ‘ ME/CFS is very complex, can be open to a wide range of interpretations (but not psychosomatic)’ Hope the UK Wesley school are listening to that.
    Interestingly Tick borne Diseases were also discussed at the Stanford meeting and are often one of the underlying infections.
    My ME was eventually found to be Lyme Disease and I recovered on long term antibiotics.
    One of the classic signs of Lyme Disease is that it cycles usually in 4 weekly cycles. It is a relapsing disease so periods of wellness and then periods of relapse. Symptoms migrate around the body and can affect every system and or organ in the body.
    Not everyone is aware of the sometimes poppy seed sized tick that bites us and not everyone gets the typical bulls eye rash with central clearing.
    It is possible to be infected and remain without symptoms for many years 10,20,30 + but then some assault to our immune system accident, infection, operation, vaccination, stress can then allow the infection to get hold and the immune system can no longer keep it under control.
    The blood tests are poor missing up to 50% of cases and the NHS have been badly mislead by mis information.
    Any response to antibiotics is a good indication it could be Lyme Disease or another tick borne bacteria – often to start with it can be a deterioration caused by a herxheimer reaction – die off of bacteria but then followed by improvements in health but improvements can be gradual hence the need for longer courses of antibiotics for many patients.
    The James Lind Alliance overseen by Dept of Health and HPA now Public Health England looked into available research on Lyme disease and found many uncertainties in diagnosis and treatment now documented on NHS Duets website – this means that PHE are in the process of updating their current outdated guidelines.
    For detailed information on this research and current situation in UK charity Lyme Disease Action is a reliable resource recognised by the Information Standards Scheme, a D of H Initiative.

  • oopsilaffatatory

    “My New Year’s resolution for 2012 was to become disabled. Nothing too serious, maybe just a bit of bad back or one of those newly invented illnesses which makes you a bit peaky for decades – fibromyalgia, or M.E.”

    It is such a jolly wheeze to collapse in the supermarket. Even better in the middle of the road. What fun. and to be able to stay in bed for days because that is all you can do. Oh it is something to die for

    Being a ‘bit peaky’ in itself is something to have to deal with when a ‘bit peaky’ is as good as it gets year in year out.
    Hope you get it Liddle
    Normally I say I wouldn’t wish ME on my worse enemy, but for insensitive loudmouthed oafs like you am willing to make an exception.

  • Rossspeak

    We have known three young people ( all “high flyers” – not coincidence?) – who have been severely affected by ME.
    Fortunately all made complete recoveries ( and were not from our family) – but we have no doubt not only about the reality of the condition – but about its severe symptoms and the struggles faced by both sufferers and their families to overcome this, only too real, disease.

  • Kitty MLB

    M.E most certainly exists, regardess of what noncense
    Mr Liddle and others spout.
    Usually in a similar way to Kyalami’s wife.
    Workaholics ( and also university students)
    Who work and study so hard that their immune system
    becomes so low that they pick up some virus andsuddenly
    your organs fight each other.And these people become
    very poorly like the wife of the gentleman below and
    to rub salt into the wounds they have to deal with the
    unforgivable ignorance of others.
    Which does’nt I believe now include the medical profession,
    thankfully for all the pour souls suffering from there
    wretched and real issues.

  • Raeven Wood

    Yuppie flu is one of the most inappropriate terms coined since the common racial slurs. I’m a Yank; we’re not supposed to discriminate based on disability. ME, PVFS and CFS are all extremely debilitating, so I liken the phrase to the infamous N word.

    Not long ago, autoimmune diseases were in the same disputed position- fibromyalgia still is. Damaging a person’s credibility and isolating them for being ill is wrong. It’s derogatory and harmful to refer to something as somatic, let alone call it a condition of convenience. People of every socioeconomic status suffer from these ailments. Those in more desperate situations will push themselves into early heart attacks, adrenal exhaustion or more visible problems, but cannot wish/will it away.

    It’s an issue of awareness, and a sort of selfish idiocy that reminds me of schoolchildren. When little Timmy got mono, everyone else wished they could stay home, too. Everyone except Timmy, that is… And if he ended up with PVFS afterward, you could accuse him of copping out, but exactly how many opportunities would he need to miss to validate his claims? The proof isn’t always apparent, but the losses accrued are.

    The fairy tale factor is increased by the difficulty of detection: Lyme disease and meningococcal infections are prevalent, but easily topped by HHV strains which don’t necessarily show up in blood tests. If they do it’s not easy to tell when they occurred. These ‘syndromes’ are diagnosed by elimination of differentials, i.e “You don’t have lupus, AIDS or a lingering cold.” That is not something employers or insurance companies want to know about or pay for. It’s also not something coworkers want to hear you complain about while you try to keep making ends meet.

    If I sound a bit bent about this, it’s because I was born with CVID, an immune disorder that went undiagnosed most of my life. After countless sicknesses and rounds of antibiotics, I became little Timmy at 14- mono for a year. Then chronic bronchitis for most of another. Then sinus infections, allergies, and impacted wisdom teeth. I was referred to as Pestilence. It went on and on until I developed lesions and had to see an Infectious Diseases doc, who revealed the root of all this by biopsy (of my yeast-infected MRSA wounds, caused by diffuse HHV-6). Unfortunately, the effect was cumulative: I was later diagnosed with fibro and CFS. I couldn’t work. Some things stabilized, others were transient, but I didn’t get better. Two years ago I got a few more nails tapped in. I have SLE, EDS and a few other acronyms that are mostly invisible and have completely ruled me. So I feel deeply for those who have ‘yuppie flu’, because I could go on disability now but I lived in pain and poverty for a very long time. I’m incredibly lucky to have health insurance and an understanding employer. I’ll never ‘get better’, but I look better than a lot of healthy 30 year-olds in Hollywood. You’d never even know I was sick… You’ll also never see me. I can’t go in the sun or drive, date, travel, go to restaurants, etc.

    Clearly, I wrote this to vent, but if you read it, please be kind to those with invisible illnesses. We are not skipping school. We’re just missing out.

    • Kitty MLB

      What you have had to endure sounds absolutely
      horrendous and people should thank their lucky
      stars that they do not have to suffer your pain.
      And yes we must always be kind and say
      But for the grace of God.

  • Liz

    My friend got ME after having a tropical disease when he was leading an expedition in the Amazon. It ruined his 20s and 30s. By the end of it he could barely walk to the end of the road.

    There is a lot doctors don’t know about the body and the mind, to dismiss people’s suffering on the basis of there not being a medical test developed for it yet is a special kind of ignorant.

  • bigjools

    I had ME-like symptoms until I discovered a year ago that I actually have Lyme disease. Apparently 80% of people diagnosed with ME who take a Lyme disease test are positive. Oh, and mine came after a bout of chicken pox too.

  • kyalami

    My wife, the most energetic person I know, had ME for 2 years. She’s 98% back to normal now (10 years later), but at its worst she couldn’t climb a flight of stairs and was sleeping for 23 hours a day. A puzzling disease and a real bugger. Nothing obvious that set it off, other than being a workaholic all her life.

    • Fergus Pickering

      Being a workaholic is always bad. I’m glad she’s better now and has given up being a workaholic. You have only one life. A shame to waste it working all the time.

      • Penny

        Contrary to the views of some who scorn (to varying degrees) ME and/or claim it’s “fashionable” or an excuse for the lazy, it does seem that among its sufferers there exist many who, like your wife, either had a tendency to go with all throttles up and/or were perfectionists.

        I agree with Liz (above) to dismiss or scorn this condition simply because it is as yet unfathomable is ridiculous (although theories exist). Medical science hasn’t reached its zenith in that we already know everything there is to know. It’s a condition that can affect children who are too young to take on a “fashionable ” medical affectation.

        • Penny

          Sorry Fergus! I replied to your comment in error. It (obviously) was meant for kyalami.

      • kyalami

        That was the upside – she learned to give herself the chance to relax without feeling (too) guilty!

        • Fergus Pickering

          Good for her. I wish her well. And you.

          • kyalami

            Thank you.

    • Jean de Valette

      It is incredible and baffling. If she (like me) is living in fear of a relapse have her go see someone versed in AutoImmune. Only docs who even come close to getting it.
      Wishing you both VERY well indeed.

      • kyalami

        Thanks, Jean. She had a marvellous doctor, since retired, and kept rigidly to his guidance. As I say, she’s 98% better but we’re just that much more careful and, when necessary, will cancel or leave a meeting or social engagement.

        She’s also proof that, for some people, a close to complete recovery is possible.

        Best wishes to you, too.

  • Hello

    “Sorry to spoil a good polemic with facts that don’t fit.”

    Well, it’s too late now, isn’t it?

    • HookesLaw

      It may or may not be ‘ME’ which may or may not exist. But Mr Rutter seems to be suffering from some after effects or other of chicken pox… does this have to equate to ‘ME’?

      I tend to agree with his view of Mr Liddel’s waffle.

      • telemachus

        I have been in many places, but I’ve never been in Cahoots. Apparently,
        you can’t go alone. You have to be in Cahoots with someone.
        I’ve also never been in Cognito. I hear no one recognizes you there.
        I have, however, been in Sane. They don’t have an airport; you have to be
        driven there. I have made several trips there, thanks to my friends, family
        and work.
        I would like to go to Conclusions, but you have to jump, and I’m not too
        much on physical activity anymore.
        I have also been in Doubt. That is a sad place to go, and I try not to
        visit there too often.
        I’ve been in Flexible, but only when it was very important to stand firm.
        Sometimes I’m in Capable, and I go there more often as I’m getting older.
        One of my favourite places to be is in Suspense! It really gets the
        adrenalin flowing and pumps up the old heart! At my age I need all the
        stimuli I can get!
        I may have been in Continent, and I don’t remember what country I was in.
        It’s an age thing. They tell me it is very wet and damp there.

        • Kitty MLB

          What in Gods name are you ratting on about,
          telemachus, this is even more befudding then

          • oopsilaffatatory

            Makes more sense than Liddle’s rambling rubbish

      • oopsilaffatatory

        1: ME does exist
        2: It is post viral. Chicken pox was the “catalyst” and ME is not the after effects of chicken pox.
        3. Mr. Liddle is an ignorant buffoon, who has not an iota of an idea about the subject and as such should keep his ill informed and obnoxious opinions to himself.

        • Nasim Marie Jafry

          I know ME is real, I’ve had it for 30 years, diagnosed by a consultant neurologist in 1984 after 18 months of extremely disabling illness following Coxsackie B4 virus. I saw Liddle’s article last week but felt little point in replying by letter, it just makes him – and detractors like him – feel important. I am glad though that John Rutter has replied… I do wonder why The Spectator dressed up medical facts as polemic… Liddle has a history of inflammatory, ignorant, hurtful comments towards people with ME and I am sure those who have children with peanut allergies were delighted at being told ‘allergies are balls’.

          I could link to numerous papers here about ME but maybe the detractors should have a look at the programme for the annual International ME conference held in London, 2014 is here:

          And if anyone is further interested they could read my novel The State of Me (HarperCollins in 2008), a fictionalisation of what it is like to live with this hellish illness. My weapon against the ignorance. Science is winning though, slowly but surely.

          • Nasim Marie Jafry

            Sorry, oopsilafattatory, this was not a direct response to you, more a general response, but I got mixed up posting!