physical activity & exercise

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Old patient harmed by exercise programs

Postby Flopsyrab on Wed Aug 14, 2013 12:00 pm

I was one of the early ME patients who attended a GET program and have never recovered. My physical functioning got worse and worse with the more exercise I was told to do.

Are we any further forward to understanding what permanent damage was done to patients like me?
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Re: Old patient harmed by exercise programs

Postby Jessica Bavinton on Wed Aug 14, 2013 12:26 pm

Dear Flopsyrab

I was sorry to hear that your physical functioning got worse the more did during your exercise programme. Understandably you would want to know more about what happened.

A couple of points worth noting:

• A GET programme is a mutually negotiated programme, with you at the centre of the decision-making process: rather than ‘being told what to do’
• A GET programme should stop and stabilise if symptoms are increasing, and should not ‘keep on increasing’
• A manageable increase in symptoms is normal (this reduces in time), but an ongoing deterioration is not
• GET involves a small increase, then a period of adaptation (can be 1-4 weeks, typically) at this level before proceeding with another increment

It therefore sounds like you didn’t have a ‘GET Programme’ as would currently be described by the recent research (see post ‘GET: useful or risky’ to tease this apart a bit more).

It’s never too late to start again, although understandably you would want to gain reassurance first.
Jessica Bavinton
Specialist Physiotherapist
BSc (Hons) Physiotherapy, MCSP, PVRA, HG (Dip), MBACME
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Re: Old patient harmed by exercise programs

Postby Bluebottle on Wed Aug 14, 2013 2:51 pm

Given the enormous number of patients with myalgic encephalomyelitis who report being harmed by graded exercise eprogrammes, some of whom report being then told that they are 'unco-operative' because they cannot continue the programme, I am absolutely horrified that it is still considered a suitable treatment for the neurological illness.
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Re: Old patient harmed by exercise programs

Postby Valentijn on Fri Aug 16, 2013 1:22 pm

Jessica Bavinton wrote:• A manageable increase in symptoms is normal (this reduces in time), but an ongoing deterioration is not

Thank you for the information. Regarding the above quote, I'm wondering how we can tell if it's going to be a temporary increase in symptoms, or an ongoing deterioration?

Due to the delayed nature of post-exertional malaise, I often don't even know that I did too much until the next day, even with very small amounts of extra activity. And I've had episodes where I couldn't even sit up for a week or three, and there was no way for me to know if this was going to be a permanent change in my condition, which was quite scary.

I also tried CBT/GET for about a year with no improvement. I wasn't pushed to do too much, but my condition deteriorated steadily during that time. But maybe that would have happened even without GET?
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Re: Old patient harmed by exercise programs

Postby Jessica Bavinton on Fri Aug 16, 2013 1:46 pm

Dear
Valentijn wrote:Thank you for the information. Regarding the above quote, I'm wondering how we can tell if it's going to be a temporary increase in symptoms, or an ongoing deterioration?

Due to the delayed nature of post-exertional malaise, I often don't even know that I did too much until the next day, even with very small amounts of extra activity. And I've had episodes where I couldn't even sit up for a week or three, and there was no way for me to know if this was going to be a permanent change in my condition, which was quite scary.

I also tried CBT/GET for about a year with no improvement. I wasn't pushed to do too much, but my condition deteriorated steadily during that time. But maybe that would have happened even without GET?


Dear Valentijn

Firstly, if your condition deteriorates in the presence of treatment and remains unexplainable, it is always worth undertaking a medical review to see if there are other factors that explain your deterioration.

Setbacks, or decreases in function/ accompanied in increase in symptoms, tend to be temporary and not a permanent change (even if they last a long time). They may stay permanent if nothing else changes: e.g. even in the total absence of a condition or disease process, if someone goes to bed for a year and doesn't ever get out, then permanent changes will start to happen to the body. The body will weaken considerably and contribute to significant symptoms. Likewise, if someone sits in a chair for 2 weeks, physiological changes will happen to the muscles, movement and body systems - this would be permanent unless the person in question actively addressed these issues.

Analysing your activity, using an activity daily, can be a helpful start - once you may have tried this already, perhaps, but a useful tool. By noting the relationship between activity and symptoms, you can gain some control and then find ways to gradually build up again.

Of course, there are so many other things that can impact on symptoms, it's not just activity: sleep, infections, anxiety, etc - so getting to the likely cause is important in working out how you can build up again.

All the best
Jessica Bavinton
Specialist Physiotherapist
BSc (Hons) Physiotherapy, MCSP, PVRA, HG (Dip), MBACME
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