Name: Jodi Country: Australia

I had a mild/moderate case of ME initially....if only I had known to rest instead of to being advised to exercise as much as possible that might still be the case. Or I might even have improved somewhat, or even be leading a somewhat normal healthy life.

As it is I now have extremely severe ME. I haven't been able to leave my house in a year (except for a trip to the emergency room for what turned out to be potentially life-threatening cardiac problems) and I have been almost completely bedbound now for the last 5 years and need carers to help me with the tasks of basic living - I'm only 29 and life for me now is just a living hell.

Whatever you do if you have ME DO NOT exercise past your limits, particularly in the early stages. There is evidence that if you do you can cause yourself serious and permanent damage (damage to the heart for example).

If exercise helps then you never had ME in the first place as a complete intolerance to even mild exercise IS WHAT ME IS. So any claims that exercise can improve the condition of a person with ME are fatally flawed. All of them. Studies showing improvements patients who increased their exercise levels DO NOT CONTAIN ANYONE WHO ACTUALLY HAS THE ILLNESS MYALGIC ENCEPHALOMYELITIS. Many researchers, looking at how patient populations are chosen for these studies agree such studies are on those with chronic fatigue and not ME - in other words they have a completely different illness. No study has ever shown CBT or GET to be in any way helpful – or even safe – for patients with ME – NOT ONE. A large body of evidence also exists which shows how harmful or useless these approaches are for ME.

Please, if you have ME, rest - it's your best chance to get at least some of your life back.

It is bad enough any lives have been devastated as mine has been (or worse) by ignorant advice to exercise, but it kills me this is still happening despite so much evidence contradicts these very poorly designed and flawed studies on tired people who do not have ME. Nobody seem to care how utterly unscientific this ‘science’ is and people with ME are paying the price for that; a horrific price all just to save the Government and others a few dollars. It makes me sick.

If exercise helps, you never had M.E.