Friday, 15 November 2013

ARE YOU an M.E US and THEM-ER???

Are you an M.E us and them-er?

Some people seem to take the attitude that there is a difference between ME and CFS, and that if someone has ME they can NEVER recover and if they have CFS it is not the same as ME. People also have the idea that if someone does recover, then whatever their symptoms whilst ill, they can’t have had ME, their illness must be something different BECAUSE: people with ME can NEVER get better. 

I think this is a load of old twaddle!

Sometimes this involves people who identify as ME sufferers back stabbing others and trying to argue against them. I myself have had nasty comments from the us and them-ers about the use  of CFS as part of my twitter tag, the argument being that if I don’t  agree with the term CFS I shouldn’t use it. I do loathe the term CFS as it appears to identify ‘chronic fatigue’ as the predominant symptom, demonstrating no insight into the particular and peculiar nature of the exhaustion experienced in ME,  nor in anyway acknowledging the wide array of  other symptoms that - for me personally - have become the nemesis that dominates my disability. However, I recognise that this is the term the medical profession use in the UK and that as such many people will only have this term to identify their illness with. I used it on twitter in order to ensure I was communicating with as many sufferers as possible and not just the ones who use the term ME.

The thing I hate the most about all this is that to use your precious energy criticising other ill people on the grounds that YOU have the CORRECT definition of the illness and everybody else is WRONG is not only counterproductive and spurious but a really really good way to distract and detract from working out what is going on with this wretched illness and how to recover from it. Oh yeah but that’s because I forget it is IMPOSSIBLE to recover from ME, because, catch twenty two, if you do you obviously never had it! Well what a load of old tosh!

Yes there are times when I talk to people who have recovered, or people who currently identify as having MECFS and I do wonder if they have had or have the same thing as me. How can they own and ride a horse regularly if  it’s taken me 11 months to build up from 5 minutes in a pool to 15 minutes? How can people go out and about so much? How can they have traveled to India whilst saying they still have MECFS??? On bad days I think "HOW? I want what you have because you can do so much more!!!" But then I think about all the ignorant people who see me going to the swimming pool 3 times a week and haven’t  a clue that I am ill, or the friends who just don’t ask or understand if I try to explain how I can sit and talk to them for 15 minutes like a normal person, but as I talk the poison is rising and I will pay for it later or tomorrow!

I do personally believe that you have to be more than chronically tired to have ME, you have to have an array of additional neurological symptoms, but I do believe people get better – I live with one of them – and I do believe that as recovery progresses we can lose the other symptoms and be predominantly left with tiredness, but more than anything I do believe that judging and bitching about other people is a huge waste of precious energy, and the best way to ensure you NEVER recover! 

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  1. Replies
    1. Glad you get what I'm saying. Already been getting the US back lash on twitter¬ :-)

    2. If only we could all join together and work out how to deal with this illness instead of wasting energy criticizing other sufferers and Drs that are trying to help - most of the energy spent appears to be negative!

    3. I have just wrote a long letter to you, about your fab blog and about my own journey of M.E, which I have had for over 12 years, but unfortunately deleted before I got to post it and am now to exhausted to rewrite it, perhaps another time when I have the energy, please keep posting as I look forward to reading yr posts and only came across the sight about a month ago. Have tried a lot of the treatments as yrself and have had the same response from them. xx

    4. Oh Lois thank you very much for your message and so sorry your long letter went astray! Typical. It is so good to hear you find my blog useful as sometimes I wonder if it is a good way to spend my energy, and whether anyone actually reads it, but do want to share positives. Would love to hear what you have tried and the affect. Maybe another time. I now write a document and save as go for the very reason that things have a habit of disappearing when its really important it doesn't!

    5. Hi , Just a quick note as not feeling great today but I have tried the Gupta training which I found useful,and I have also done the lightening process although I have not seen much of a difference since doing them, I do believe that Our thinking and our behaviour and negative thoughts about our illness could be keeping us stuck in this dreadful place . I also strted swimming in the last couple of month and crashed burned the first couple of times as felt ok at the time and got excited and did more than my body could take but have slowly started doing it again. xx

    6. yes easy to do too much that's why I use heart monitor when in water, I can both time it exactly to the second and keep an eye on my heart rate and if it goes a bit loopy make sure I take it very easy. I'm going to post about how I am doing with the water therapy in the next few days. Really important to maintain every stage for a month before moving up and go back down if things go wrong. Good luck with it, it really does help me.

  2. Excellent points made! I´ve seen some quite mean twitter debates about it, some people getting medically political on their high horses and being quite rude. The way I see it is we are all ill, why argue or judge on the name of the illness? It can get quite silly at times. Whilst CFS is an annoying name it is still a horrendous disease and the people with it need support from other chronics!
    Thanks for sharing your view on it, Hayley at

  3. Good post. I too think recovery is possible. The only people I find frustrating are those that believe that some strength in their own character is what let to them recovering. You know the sort of comment: "I had ME too, but I was determined to get better and not to let it beat me. So I just did a little more each day until now I'm totally cured!!"

    I agree that many folk don't think you CAN get better from ME (although I suspect anyone who has had it, will always need to be careful), but I think recovery is possible. However, I suspect that it's a bit like waiting to roll a set of sixes on a handful of dice - for some lucky folk it will happen sooner than for others. BUT being determined to roll sixes will not in itself make it happen.

    However humans have a wonderful characteristic I've noticed. If they are lucky they often put it down to personal brilliance, but when unlucky they put the blame elsewhere. So I've no problem with folk recovering from ME, but I do resent them claiming the achievement as their own determination to beat it! ;)

    Thanks for the thought provoking blog post. :D

  4. Oh yes I so agree with you! Those annoying types who tell you they used the lightening process etc and imply that if you just put your mind to it you too could be better -, then you dig a little further and discover that before they did the LP they were traveling to India on holiday!! And I think I wish I could get as far the nearest city let alone India! with these people I think they have basically healed, or perhaps were never quite as ill to start with, and yes perhaps they have got very stuck in their thinking and fearful - understandably - and the LP or whatever is just the last piece of the puzzle needed to tip them back over the edge to full recovery!

    I love your analogy that people think they are brilliant rather than lucky for throwing six sixes!