16/01/2015

My views on the press claims that M.E patients are scared to exercise

So the good old press wreaked havoc in the M.E world this week by claims that people suffering from M.E (also known as Chronic Fatigue Syndrome - CFS - which in my opinion is a rubbish name for it) would get better if they were not frightened to exercise. Or that by not exercising they are making themselves worse! Grrrr.

And I couldn't really keep my mouth shut about it even though I should really do the usual & roll my eyes at the rubbish they print. However I feel that if we, as sufferers, don't speak up then some people "may" actually believe it. And a lot more harm than good will happen to people, especially those who may be newly diagnosed, who take what is printed as gospel.

Several newspapers reported that new research had been released & claims that sufferers were making their symptoms worse by not exercising have really angered people who live with the (extremely debilitating) condition. There is something called Graded Exercise Therapy (GET) which some people within the medical profession think will help & it is used as a form of so called "treatment". These medical people think M.E is a psychological condition (it most definitely is not) best treated with enforced exercise, which only worsens the condition's effects.   

Before I got M.E I went to the gym about 3 times each week. I loved to exercise & keep fit. I even pushed myself to keep going before I had been diagnosed but knew something was wrong. It is one of the things I have found most difficult about the condition, having to stop.  Who would purposely choose to not do something they enjoyed? How can someone fear doing something they know will make them about a thousand times more poorly? It is common sense. Would you say to someone with a broken leg to try & run on it to make themselves better? No, I think not!

Try walking (or not walking if we are being literal!) in our shoes Mr/Ms journalists & tell me if you still think what you have written is true.

I find it so frustrating that even walking a tiny bit wipes me out so much that it affects me both with pain & fatigue for days. Any over exertion, no matter how small, has the same affect. I know my limits & if I could exercise without it detrimentally affecting my health then I would be doing it already. I tried to do a ballet dvd once years ago with very gentle exercises which someone had recommended but it knocked me sideways & I felt as if I had been run over!

I do think it is important, if we can, to keep our bodies moving a tiny bit but that is very different to exercise. I mean things for example like moving legs about a little. Of course all sufferers are affected in various ways so everyone is different & it isn't always possible. I have osteopathy regularly (which I will be posting about seperately soon) to help alleviate pain. I had lost all my muscle tone when I first started going a few years ago through being immobile for so long so I try to keep moving a bit when I can. However I know what I can & can't do & on my worst days can barely move at all.

Action for ME have printed a response to the press articles & this is what they said. Link to article here here 




If it was as easy to just exercise to get better then you'd have seen me back at the gym long ago. I wouldn't even make it past reception now without feeling like I would collapse! Harmful articles like the ones this week are the reason research into M.E & finding a cure are so important. 


Ali
ME Mummy A
xx

7 comments

  1. Well said. I do think that people have to remember that everyone is individual and affected differently. This means what works for one won't work for another. I do think moving is so important if it can be managed but exercise needs to be redefined for chronic illness sufferers. Some days sitting up in bed is all the exercise that can be managed. It might be walking to the bathroom. On a good day possibly a walk outside (or going out in a wheelchair). Simple things that people take for granted is exercise to us. There is a graded scale for ME for a reason- people don't suffer the same. People aren't all capable of the same level of fitness. The daily decisions are made, not out of fear, but knowing what is best for us. We become very in tune with our bodies. No one truly understands and poor journalism doesn't help.

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    1. Exactly.. it is so upsetting seeing such things written when we know ourselves what it is like for us. No onw would choose to live like this! X

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  2. Argh it's so annoying because people find it difficult to understand anyway without these kind of articles with false information! They shouldn't be allowed to write this kind of thing! Hope you're doing okay Ali x

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    1. Sorry Lauren only just seen your comment. Very annoying & I hate the way people make incorrect assumptions! I have calmed down since I wrote this but still gets to me xx

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    2. Sorry Lauren only just seen your comment. Very annoying & I hate the way people make incorrect assumptions! I have calmed down since I wrote this but still gets to me xx

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