Long Term Glandular Fever - Open letter to doctors

An Open Letter

   An open letter to the medical profession

(If you're gonna take the rep. you better be prepared to take the rap!)

   Some of you seem to think that you have a right after 5 minutes to negate the last 15 years of my suffering. Here I am not simply referring to the dismissal, 'it's all in your mind', (or it's more threatening cousin, 'it's all in the mind, do you really want to go down the psychoanalytical route?'. Here I am referring to the quite amazing (to me at least), denial that I am suffering any symptoms at all! Bugger the cause, if the effect isn't accepted what can you possibly do for me?

   CFS/ME is especially trying for the sufferer due to the lack of obvious symptoms: I once had my neck in a surgical collar and received no end of sympathy from medical and non medical alike. The fact that my problem then was not even in the same town let alone the same ball park as my current condition only leads to (I hope) understandable frustration with people in general and the medical profession in particular: you guys are supposed to be above all that. If someone's health is messed up it is your job to help to fix it.

   Here's a simple way for you to understand something about CFS/ME:

   I have a load of mouth and throat ulcers, they're a symptom that you can see - with no argument whatsoever. Now most people believe these are caused by a viral infection. I have heard suggestions that minor oral injury can be their cause but either way, there is clearly something which prevents the proper healing process take place. Antibiotics have no effect, neither do anti-fungals.

   Now, I've had mouth and throat ulcers for over 15 years. They come in waves but I can count the number of weeks I have been free of them on my fingers. Ok, nothing too controversial yet is there? But hey! You've just admitted that I have a viral infection that causes me physical symptoms, which is both unknown to you and incurable by you! There are no tests for it but you agree that it is likely that I have been caused considerable pain for over 10 years.

   Why then is it so difficult for you to just listen to what I am saying? I have another problem, (with a number of indications that a virus is present). It is also caused by an unknown, untestable and incurable virus. This illness makes my muscles hurt, it makes my glands permanently swollen, it gives flu like symptoms all the time and it has made parts of my life hell.

   Consider this: By your refusal to take my word for my illness you have made my condition worse for me. Thanks.

   Worse still, 20 years down the line everyone will know about this illness, you'll have a test, a treatment and a whole load of sympathy for it. But d'you know what? Another poor sod will arrive in your surgery with another 'mystery' illness and you'll again find yourself saying, "There's nothing wrong with you". "Are you afraid of work?", "Maybe some counselling would help". "Try this new exercise program"(!), "Are you on a good diet?", "Anti-depressants might help." etc etc.

A page from James David Chapman's website. Located at: http://www.users.globalnet.co.uk/~jchap/ Site mirrored here at: http://www.j.chap.btinternet.co.uk
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