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A little about Myalgic Encephalomyelitis (ME) and exercise. - Carers UK Forum

A little about Myalgic Encephalomyelitis (ME) and exercise.

For issues related to specific conditions and disabilities.
The subject of exercise was brought up to me recently and I realised not everyone is aware of the situation regarding ME and exercising so I thought I would pass this on.

As myalgic encephalomyelitis (ME) isn't always fully understood, I would like to take this opportunity to explain a little for those who would like to know.
As (ME) can be very debilitating -as in my sons case-it is not possible or advisable to exercise 'hard' or even at all at the onset of the illness. The Tymes Trust.org is an me charity for young people and explain how damaging Graded Exercise Therapy (GET) has been found to be for patients with ME in the early or severe cases of the illness.
http://ww.tymestrust.org/pdfs/vision2011-1insert.pdf

The symptoms of ME vary from person to person and many find themselves physically and mentally disabled by this horrendous, and as yet, not fully understood illness which can sometimes last for the life time of the patient with ME. There is no cure and no treatment.

It is crucial that the ME patient carefully 'paces' their activities to try to avoid a relapse,
although any energy used can sometimes cause a trigger of symptoms, at best, 'pacing' is to maintain lower level symptoms that are at least-or have become, due to longevity-manageable. There is an excellent article that has since become a mantra for people with 'invisible illness' and helps to explain to others about having to use their energy carefully, it is The spoon theory.
http://www.butyoudontlooksick.com/wpres ... on-theory/

I am not an expert, just a parent who has witnessed first hand and experienced the effects of ME in my son for 10 years.We have learned what works and what doesn't, and found where the right support is and definitely where it isn't. Very best wishes xx
I have ME and fibromyalgia
My Mum suffers from ME and went undiagnosed for many years.

The thought of her doing excercize now just makeshift
Laugh! (Sorry!) she has no sleep pattern and sometimes all she can manage to do in a day is get dressed. Leaving her with no energy for anything else. She doesn't leave the house very often and if she went for a half an hour walk one day, she would be bed ridden for the next FEW! She has to use her 'spoons' very carefully.

Mum can also be quite anti social. I don't see much of her. She can't look after any of the grandchildren without my Father around and these days she can barely eat.

So many controversies still surround M.E. It's very hard to grasp unless you've seen it. It's more than being tired. All you can do as a sufferer is listen to your body and stop/rest/sleep when your body wants it.

I couldn't imagine the affects of a child being diagnosed with the disease. My thoughts are with you on that one x