A man is sent to jail in a far away land. To his terror he finds he is condemned to share his cell with either a lion or a tiger. "Which do I choose?!" he cries out desperately.
Having had M.E for 35 years I have no doubt whatsoever that exercise can and does exacerbate symptoms. To tell it straight: Exercise can deeply harm M.E patients, long-term. Prescribing exercise for a disease characterised by Post Exertional Malaise, (illness following exercise), was a bold move from medicine. It created a generation of M.E patients who attack and despise doctors, especially the psychiatrists who came up with the idea.
"Choose a tiger!" whispered a guard. "If you share a cell with a lion, after a day it'll bite you! They always do".
Having recovered function from M.E; going from severely affected through to mild and to now often non-existent symptoms, I have a different perspective on the charged question of exercise in M.E, for I know, with certainty, that rest harms M.E patients too. It is a bold move for patient activists and their new-found allies in research to promote a long term response that would destroy the physical and mental health of anyone who tried it, M.E patient or not. It is no wonder medicine resists.
"No. Choose a lion!" said an inmate. "I chose a tiger and after a day it bit me and it keeps on biting me! My life is miserable with a tiger."
Doctors and activists fight over whether exercise harms M.E patients. And it seems important. The doctor's careers and the patient's lives depend on each side holding their position and beating their opponents. This battle has, in fact, raged on for decades and it is a tar pit. Left unchecked, I expect to find exactly the same people saying exactly the same things about exactly the same "enemies", in five years, in ten years, indefinitely.
The prisoner looked around in wild despair. The guards were already coming, ready to ask him to make his choice and the other convicts were gathering around to hear. But does it really matter he thought, dejectedly, whether at the end of a day one is repeatedly, endlessly, bitten by a lion or a tiger?
On the face of it M.E patients and their physicians share an impossible choice. There is no way to win. It is a lose - lose situation. Both rest and exercise harm M.E patients.
Then; The prisoner's eyes fell on one man: a man who appeared entirely unscathed. There were no wounds on his body and no signs of terror and despair on his face. How could this be?
M.E patients arrive on the internet and they meet other patients who re-enforce their world-view - of course they do. Exercise-intolerance is the hallmark of M.E. And sadly they share so many experiences where medicine seems to have made their illness so much worse. It is shocking. It is shocking how little medicine seems to care.
The prisoner broke free and ran over to the man. "How are you untouched?"; "Which predator do I share my cell with?!"
M.E physicians meet other doctors and their world-view is re-enforced. The belief, seemingly held by so very many M.E patients, that long-term inactivity and rest are necessary and harmless appears to these physicians to be delusional. And together they agree that you can't talk about it, that it is shocking how irrational and aggressive M.E patients seem to be.
"Do you see?" came the unbitten man's response. "The choice is between a lion and a tiger. They'll each bite you after a day. So, choose a lion..."
The prisoner shook his head, nonplussed. And as he was led away he heard one last bit of advice. Friendly advice. Absolute kindness in fact. Advice that could save his life, if only he could listen and think for himself.
"...then every few hours change your mind".
Leave doctors and patient activists to argue endlessly about the relative merits of the extremes of HOT vs COLD, NOISE vs SILENCE, EXERCISE vs REST. This circle of hell is not for you.
M.E patient, learn to change your mind. Repeatedly.
