Of course, the thing about Chronic Fatigue Syndrome is that it is such a controversial disease. Isn’t it?

I hate starting articles with direct quotes, so that little indirect observation is a very slight paraphrase of something a fellow journalist said to me a few weeks ago.

I just about resisted the temptation to respond by paraphrasing Joe Pesci in Goodfellas – “Controversial, how?”

Instead, the conversation went off on another tangent. But her throwaway remark sowed a few seeds.

So how and why is CFS controversial?

Well, there’s the name for a start. In the UK, you’ve got your CFS or your Myalgic Encephalomyelitis (ME) – take a pick.

ME still has too many strong resonances of the ignorant 1980s and 90s for a lot of people and that infamous but apparently handy little label that most media organisations and a few medics liked to use in relation to the illness.

It is still used in ignorance, of course, the label that dare not utter its own name. That is why many prefer CFS, but then you invariably tend to have to put CFS/ME just so people know what you’re talking about and you end up coming full circle.

There are a few other variations and alternatives that also get bandied about, but I wouldn’t want to muddy the already murky waters too much.

Further controversy comes in the form of the general media portrayal and attitude towards this illness. It isn’t what you call the most sexy of health stories amongst most of my colleagues and a fair few of those who do write about it can’t help themselves and end up wasting half of their allotted space by rehashing some stereotypes and outdated misconceptions.

One of our local papers ran a full-page feature recently on a ME support group and the journalist started the piece by informing his readers how surprised he was to enter a room full of bright, happy, positive people – no doubt with clean clothes, hair and faces too. He’d apparently expected something altogether more depressing and lifeless.

I wonder whether he would have started an article about cancer patients with an observation that quite a few still had hair? Possibly not, but never say never.

Then there is the other controversy. This is arguably the most serious as it probably goes a long way towards explaining the lack of understanding within the media and the struggle to give the illness a universally acceptable name.

This is the medical controversy. The medical profession largely seems beset by a constant bickering that goes on – largely unreported, obviously – regarding this illness and which inevitably ties people up in knots so they don’t really address some of the fundamental issues related to CFS.

Such issues as: what triggers it; how can sufferers control or manage it; is there any chance of treatment; what about a recovery programme?

Fairly basic questions for any illness, you might agree. But fairly basic questions about CFS that remain unanswered thanks largely to the meaningless squabbles and personality clashes that seem to take up so much valuable research, diagnostic and treatment time.

Just to add a little icing on the controversial cake, if you are struck down with CFS you then end up having to play the GP lottery.

Will your GP believe that CFS actually exists and so offer some support, sympathy, understanding and care; or will you spend years being shunted from one futile test to another before the GP gives up on you and suggests you find another doctor?

And I haven’t even touched on cognitive behavioural therapy – that cure-all for anything and everything – pacing or the lightening process. I suspect others will pick up on those.

I paint a fairly bleak picture. I may even comes across as slightly angry.

Damn right I’m angry.

Having watched my wife struggle with her health for close to three years before finally getting an official CFS diagnosis 18 months ago, then helping to care for her as she was forced to give up work, it is safe to say I get angry and frustrated

Rachel now has an excellent GP – the type of person who is always willing to take time to listen and to try and offer a solution; the type of person who says: “Yeah, its shit isn’t it?” just when you do actually want to hear a no-nonsense, blunt assessment.

It isn’t all doom and gloom, obviously. There are plenty of lighter moments and today sees us returning home in fine fettle from a long weekend of birthday celebrations.

These feelings of anger and frustration are never directed towards Rachel. I reserve them for her CFS – she isn’t her illness, after all.

I also direct them towards the idiocy that allows CFS to remain a “controversial” illness and prevents the medical profession from carrying out properly funded, independent and wide-ranging research into the illness.

Would I be so angry, especially with my media colleagues, if my wife had not developed CFS?

I like to think so, yes. But then I would say that, wouldn’t I?

The BBC’s news website recently carried a story on research concerning the “seven genetic types of ME”. Interesting stuff, but what I found more telling was the column on the right-hand side titled “See Also” – one story a year appears to be the usual media approach to CFS, although whether that story actually does anything to allay the controversy and increase the level of understanding is debatable.

So on this day of raising awareness I’ll sign off with the best way I know to show you just what CFS means to its sufferers.

This is a video put together by my wife as part of a photography project to take a self-portrait shot every day for a year. It wasn’t meant to portray a year in the life of ME/CFS at the outset, but it gives a fairly accurate picture of what it can mean.

No two days are the same, there are a few highs and a few lows. I can look at each picture and know in an instant just how Rachel was feeling at that particular moment, which is why this video and the other three she has compiled make me laugh and cry out loud in equal measure.

I would suggest you follow this link to Rachel’s blog and take a longer look at her self-portrait project and the four videos, if you have the time and the inclination.

If a picture paints a thousand words, what does 366 do? 

 

9 responses »

  1. [...] Paul Groves – Controversial, ME? Whatever could you mean? [...]

  2. [...] Paul Groves – Controversial, ME? Whatever could you mean? [...]

  3. Ursula says:

    Paul, of course you are angry. What else could you be?

    It’s a darned subject you raise. Ignorance has always been humanity’s prerogative and downfall.

    Rachel’s condition IS difficult to understand; as are other debilities. I understand the point you are making, Paul. But those of us who have not experienced whatever misfortune might befall one of us need to be given more of a chance to learn in order to empathize.

    How long have we known of, say, depression, addictions – and, to this day, have learnt very little; indeed are disdainful and judgmental in the face of acute suffering?

    It’ll take time, Rachel, which helps you little now; however, thank heavens for small mercies: Hats suit you! Lucky you.

    All the best to both of you
    U

  4. Rachel M says:

    It’s always refreshing to read about ME/CFS from non-sufferer’s point of view, especially when it is well educated and supportive.
    I am aware that there are different kind of challenge and struggle for carers.
    It also brings strange kind of feeling of peace by knowing a couple with and without ME/CFS is working together for life with chronic illness. As you know, there are too many people who abandon their partner/family when they struck by severer illness.
    You guys are really breath of fresh air to me. :-)

  5. micktl says:

    Paul – as another partner of a CFS sufferer can I say HERE HERE!

    While I get mighty angry by reactions of my partner’s friends and family, it is the attitude of many in the medical profession that makes steam come out of my ears. We like you went through several GP’s each making us feel stupid for suggesting that perhaps this ‘impossible tiredness’ that my partner was experiencing was actually caused by something biological.

    Fortunately we have now found two fantastic GPs who while both admit they have limited knowledge of CFS have been prepared to listen to us, provide support and learn about the condition.

    As the wait for GP’s become longer, in many cases the compassion and understanding a GP starts their career with gets washed away in a wave of pressure and stress. While this is understandable it comes at a massive cost for many people who suffer from more than a sore throat or a runny nose.

  6. Paul Groves says:

    Ursula: Like it or not, the media plays a huge role in helping to raise awareness – or not – these days. The media is stuck in a time warp regarding this illness, but so is the medical profession. Hopefully things like this awareness day might snowball in the future and so will the general awareness.

    Rachel: As usual I’ll deflect your comment back – I’m inspired by your determination and your eloquence on Blue Coffee Mug ;-)

    micktl: Thanks for stopping by.
    We had the misfortune of visiting the local clinic at the start of the year as my wife had a cold and throat infection which hadn’t shifted for close to 2 months.

    Alas, her normal GP was unavailabe so we saw another doctor and her body language as soon as we walked in screamed: “I’m not interested!” Needless to say, the GP offered nothing but one-word answers and couldn’t wait to usher us out of her room.

    What struck me at the time was a simple question: When does a doctor’s calling and vocation become just another job?

  7. [...] Paul Groves – Controversial, ME? Whatever could you mean? [...]

  8. [...] Paul Groves – Controversial, ME? Whatever could you mean? [...]

  9. [...] day itself appears to be going from strength to strength and the posts written in 2008 (including my own) certainly gathered a big [...]

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