Reacting To The Media

Hello there,

There was an article published in The Guardian on Monday entitled “It was like being buried alive”: battle to recover from chronic fatigue syndrome. I was pleasantly surprised when I saw it, I liked the headline, and was expecting a more sympathetic point of view that one might expect from The Daily Mail or The Sun (whose opinion I’ve had to suffer through many a time), and although the article did nothing so overt as calling ME “yuppie flu” which The Sun did just a few weeks ago, the inferences it was drawing were still pretty bad.

newspapers2

Usually I don’t comment on this sort of thing because it gets me ridiculously worked up, but this time I wanted too. Maybe because The Guardian is my newspaper of choice, maybe because the last few months quite a few negative articles have cropped up and the frustration at them has built up. I don’t, anyhow, I’m about to get worked up.

The summery paragraph at the top of the article in question reads as follows:

Is it physical or mental – or a combination of the two? Does chronic fatigue syndrome, or ME, even exist? In an extract from her book Cure, Jo Marchant tells the story of Samantha Miller, one sufferer of the controversial condition.

When I read that, my stomach dropped.

The article itself is an interview with a woman who says she has been cured of ME/CFS through Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT). Although later on in the article she says if she gets too stressed at work or does too much she becomes ill again, so her definition of cured is very different to mine.

Then it goes on to talk about the PACE trial, and how the findings show that, although GET and CBT didn’t work for all the subjects, it worked better than pacing.  They make out that because this trial proves that ME/CFS is at least partly psychological (which the trial does NOT, there is still missing data from the trials which the Queen Mary University of London is refusing to release – but that’s a whole other can of worms), the patient groups were so furious with the findings that they refused to accept them.

It then goes on to talk about a letter that was published is The British Medical Journal in June 2014 postulating that ME/CFS was in fact just a “meme”, in this context meaning a psychological idea or behaviour that is transmitted from person to person. This, for obvious reasons, went down even worse than the PACE trial.

The article was written by Jo Marchant who has recently released a book called Cure, which is all about the placebo affect and the minds ability to heal the body, so this was the angle the article was written from. Now let me say, I agree that the mind is extremely powerful and there is a lot about we don’t know. I agree that the placebo affect is fascinating, and that mind over matter can sometimes be very useful. The article talks about how there is a problem with medicine at the moment where the brain and body are treated completely independently. I agree with this as well, and I think that’s where the stigma of mental health issues partly comes from.

However, to use ME/CFS as the only example of an illness that demonstrates this idea in the article, is subtly (or not so subtly really) reinforcing the idea held by much of the medical community and the public that ME/CFS is all in the mind. The article also doesn’t explain the real reasons behind why the patient groups disagree with the PACE trail, it’s not just because we don’t like the results, it’s that the science is seriously flawed, and the university behind the study is refusing to be transparent about it!

I also understand that GET and CBT does work for some people. I have tried GET, I tried it every day for 2 years, and did I get better? No, I got markedly worse, but I am fully able to accept that just because it didn’t work for me, doesn’t mean it’s that way for everyone. To imply that some ME/CFS patients are refusing this treatment because they don’t like that it insinuates their disease is psychological is completely ludicrous.

On the whole this article is better than a lot of the others that have been published recently. It does give you an insight into what living with ME/CFS is like, and it does say (although once, is a short sentence) that “many authorities now agree” that it’s a physical illness. But at the same time it insinuates that GET and CBT are conclusive treatment, and by calling it a “controversial” condition inferring that doctors disagree over whether it is a physical or mental illness. I can’t decide if I it makes me feel better or worse that the undermining of ME/CFS sufferers is subtle. On the one hand there are some good points, but on the other, the negative conclusions people draw from the article might be subconscious, so they might not realise that they’re being drawn into the prejudice.

ME/CFS patient groups are often made out to be militant and oversensitive by the media and healthcare professionals. We are portrayed as spoilt children throwing our toys out of the pram because we’re not getting what we want, but we didn’t want any of this… We didn’t want to have to fight to get proper medical treatment, we didn’t want to have our independence, social lives and futures stolen away by an illness that baffles doctors. If you were constantly silenced, ridiculed, and had no treatment, forced to live in this horrific limbo you’d be angry, you’d be so fed up that nothings changing, you’d have no choice but to be militant.

A couple of weeks ago of another study was released showing that ME/CFS patients are six times more likely to commit suicide than the average person. I mean, is it any wonder? I’ve been trying to think of analogy to explain what it feels like to have the majority of the world question whether the illness that has completely ruined your life “even exists”. I mean… there truly are no words to express the disempowerment, the anger, the frustration, and complete sense of hopelessness that I feel. It destroys any sense of self esteem, any confidence you have in yourself or your beliefs is shaken to its very core. It changes you as a person in ways you couldn’t have imagined before.

I hope that one day it won’t be like this. I hope that one day I’ll be better and be able to shout from the rooftops about how unfair and soul destroying living like this is, and I hope that day comes soon.

Until next time, Rhosyn.

P.S. Well done if you got to the end, it was pretty long!

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10 thoughts on “Reacting To The Media

  1. It’s great that thise techniques worked for her but it is a kick in the guts to assume that it will cure ALL cases. Every case is different, and it is not at all because we have brought it upon ourselves mentally. These illnesses are very much real, and we feel physical pain!
    I love that she has shared her story, but it leaves the rest of us in a bit of a pickle – being judged harshly if these techniques don’t work on us.
    I wish that the journalists who use the word “illness” and “even exists” in the same sentence, would get something like this or have a loved one with it. I wish they saw it every day and how quickly it changes a life.
    Then we’ll see what they write about.

    xo I believe you and I believe that one day they will listen to us and take us seriously. We just have to keep writing, sharing and advocating. We must.

    Liked by 1 person

    • I know, if they had personally experience of it, they would never suggest such things.
      You’re right, we mustn’t stop fighting, hopefully the day when they finally listen will come soon. Xxxx

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  2. I’ve had CFS for a little while now, but NLP is seriously helping (the lightening process)… I don’t think it’s reinforcing the ‘it’s all in the mind’ thing – the symptoms are real and they are physiological, but definitely exacerbated by negative thinking and thought patterns.

    I know how debilitating it is because I’ve been through it all, the blood tests, the countless supplements, massage, osteopathy, reiki, examinations etc. and to not have a ‘label’ that can be applied, and to have an illness that fails to be scientifically diagnosed is a struggle for some, but I don’t think it’s the be all and end all – NLP has taught me to change my perspective of my illness and that I have control over it.

    I’m totally with you on the media portrayal of the illness though, it does need to be changed.

    If you’re resistant to trying the lightning process, you probably need it more than if you’re not!

    I wish you all the best 🙂

    (Not sure how I feel about this woman and what she’s standing for, but I think she might have some interesting points you might want to check out – she’s done extensive research on ME and is fighting for a similar cause, and for the idea that it is an epidemic that is spreading.. interesting https://twitter.com/oslersweb)

    Liked by 1 person

    • I did do the The Lightning Process in February 2014, and it didn’t work for me. I didn’t feel like it was telling me it was all in the mind, but I did feel like I was being told to “think my way out of it”, and when it wasn’t working I was made to feel like it was my fault, like I wasn’t trying hard enough, which wasn’t true at all. If it’s worked for you though, then that’s brilliant.
      Thanks, I’ll have a look at her work 🙂

      Liked by 1 person

  3. This post hits home. I’m dealing with chronic Lyme disease which triggers chronic fatigue and fibromyalgia. Chronic Lyme sufferers are treated much the same if not worse. It’s almost as if it can’t be diagnosed simply then well it doesn’t exist. I think all auto immune diseases are complex and as yo shared above, each treatment plan is different. I guess if we don’t fit neatly into Western medicine’s treat the symptoms then we are screwed.

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  4. Pingback: My Chronic Life Turns One | My Chronic Life

  5. Awesome blog! I’m going to share your blog info at our next Fibromyalgia /CFS/ME/Chronic Pain meeting next month. We are located in South Jersey but I know many of us use the internet as one of our support systems. I found your blog through MD Junction. Someone posted a link to your blog. I really understand your frustration. I’m just two years DX this May & still learning to deal with the public’s view of these invisible illnesses. I was not officially dx with CFS/ME but from what I’ve read and heard from others I’m pretty sure I have that also. Someone recently was in our group sharing some of their experiences and it felt like I found a kin. I was always thinking I had it but now I really believe it too.

    Liked by 1 person

    • Thank you so much, I’m glad you enjoy what I write. I’d be honoured you want to share it with people. I didn’t realise someone had posted a link to it on MD Junction, thank you for telling me 🙂 It’s very important to connect with people who are going through similar things!
      Getting a diagnosis is extremely difficult, I hope you manage to find a GP/specialist that will listen to you properly.

      Like

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