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Sunday, 25 January 2015

Misleading and not helpful

Hi,

Foggy is away living the dream in Kerala and has given me permission to write this blog post.
I deliberately keep this campaign light and upbeat as I feel there are more than enough heart wrenching ME life experience blogs/campaigns/websites in the world already. I am trying to make this campaign engaging and enjoyable to follow whilst highlighting the awfulness of this increasingly common debilitating illness. I think non sufferers do not understand the politics surrounding the ME/CFS debate and many of the other issues which cause discord among sufferers/campaign groups. I want to focus on educating without the veil of politics confusing the issue. I don't usually comment on the latest research findings as my brain just doesn't understand what it is reading (I was dreadful at Biology at school) and I don't want to add fuel to an already confusing medical subject.

However, last night I went to a friend's house for dinner (very nice too) and a recent article came up in conversation. She asked me if lack of exercise could contribute to my symptoms. I wondered if she was asking the question because of the research article published this week, she said yes it was. I spent the next 15 minutes attempting to explain why/how exercise affects my symptoms (I don't think I did a very good job as I/we don't know why!). Her view was that if symptoms were already bad without exercise then surely exercise wouldn't have an overly negative impact. I explained that it makes symptoms 10 times worse. She is a supportive friend and accepted my reasoning without arguing...I wonder if other sufferers have encountered that this week?!

The article below was published in the Guardian but it could also be found in a number of other newspapers this week.

http://www.theguardian.com/society/2015/jan/14/chronic-fatigue-syndrome-patients-fear-exercise-hinder-treatment-study-me

This article made me incredibly cross; yet again it hints that ME sufferers are lazy and avoid exercise. Let me explain how MY body reacts to exercise.

I hate that I can't walk/cycle to work and drive in every day. It would be about a 45 minute walk door to door and I know some of my colleagues do this. I know that half way to work I would start to get dead legs and by the time I reach work I will be so exhausted I will be too tired to do any work and would have to go home. the over exertion would impact the next few days and would probably lead to a few days off sick. Many times, I have taken my dog Patch on a 30 minute walk and when I reach the farthest point from home my symptoms double. I get brain freeze; I just can't think straight and my legs go numb. I collapse when I do get home, I am usually shivering whatever the temperature, have swollen glands, my cognitive skills will have gone AWOL; my spinal cord feels like a flimsy piece of spaghetti and I can't hold my head up as it feels like a dead weight. I only take Patch for walks at weekends so it doesn't impact greatly on work, luckily.

A few years ago I went through what I will call a remission period. I could go to the gym 3 times a week...do a 30 minute cardio/weights session and then go to work. I used to get that lovely post exercise buzz until around lunchtime, symptoms would gradually get worse throughout the day and I would be exhausted by bedtime but it was manageable. I had been advised by doctors that exercising could help with my depression and M.E. and so I was experimenting. Unfortunately, I then experienced stressful events in my life and thoughts of exercise vanished as my M.E. symptoms came back with a vengeance.. 20-30 minute dog walks have been my limit for the past 2 years.

My own personal view is that, if you have moderate/mild M.E. then it is good to stay a little bit active so that your body doesn't go to sleep completely. To be honest, just struggling into work, shopping, day to day tasks cover that without the need for specific exercise. Movement is a good thing if you can do it. However, severe sufferers can't do that and I am assuming that just breathing is enough movement to have to cope with; let alone speaking, blinking, watching and interpreting things around you.

I do not have a fear of exercise, I simply have to micro manage my energy levels to make sure I have enough energy to get from A-Z every day without collapsing. I find it incredibly insulting that the research team mentioned in the article seem to think that we don't exercise because of fear. The article is extremely distracting from the key issue; we need more research into the causes of the illness not just random headline grabbing rubbish about how to manage symptoms. Most sufferers listen to their own bodies and manage symptoms accordingly. Having the illness is bad enough without having non sufferers preaching that we don't help ourselves by not exercising.

Sally

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