Wednesday, April 30, 2014

Stop Telling Me How To Eat To Cure My Incurable Disease

Back in the dark ages when CFS was first on the radar, there was a recommendation to try elimination diets -- not because the diet itself would cure you, but because it would help to identify if you were allergic to anything that was causing your symptoms.  To the consternation of my husband, I (we) tried all of them. 
I concluded that the only things I was allergic to were the things I already knew I was allergic to.
I also concluded that without meat I was weak because I couldn't get enough protein from beans (yes, I had advice from two vegetarian co-workers on meal planning to create complete proteins), and without sugar my brain didn't function.
I grew up in a family that didn't use salt in cooking because some members of the family had high blood pressure -- I had to learn to use a lot of salt to raise my blood pressure so I wouldn't pass out.  Similarly, I had to learn to keep a steady supply of sugar coming in so I don't go hypoglycemic and pass out.  I don't have diabetes; there is no reason for me to avoid sugar just because it helps you.  You wouldn't take a prescription medication for a condition you don't actually have, so why would I follow a diet for a condition that's exactly opposite what I have?
If you "cured CFS" by going gluten free, you didn't have CFS.  You had celiac.  The symptoms are similar, but not exactly the same.
The experts at IACFS/ME have written in their primer for doctors that there is no dietary cure/treatment for CFS.  Obviously, if you're lactose-intolerant quite aside from your CFS, you'd avoid milk, but that's not because you have CFS.
So, if you're going to tell me that you have this magic new diet that will cure my CFS, just keep it to yourself. The best I can do is to eat a normal, balanced, nutritious diet.  Vegetarians and vegans get CFS, too, so if their diet didn't keep them healthy in the first place, why would it cure me?
And if I want a cookie (or ice cream or pizza), it's not going to kill me. 
Now, if you'll excuse me, there's a steak in the fridge and that's what's for lunch.  With a healthy baked potato and a vitamin-rich salad.  And no guilt, because I need protein, carbs, and vitamins a lot more than I need some bizarre diet that will take all my energy and money to follow.

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