Monday, March 14, 2011

CBT for ME/CFS: Ignoring, mocking, and then deliberately masking the problem

Laurie Miller wrote:

It's not surprising that scientists new to this illness are caught off guard by the deluge of comments and passion that come rushing at them. I hope that they can see that where the rage shows, it shouldn't be taken personally. Many patients will listen to their reasoning and do applaud their efforts.

The anger is properly directed not against you, but against a few people, some now dead and some living, who really did cause life damage to at least hundreds of thousands of people by first ignoring, then mocking, and then deliberately masking this problem through redefinition into meaninglessness.

For those suffering, it's very hard to hold back and wait patiently, once a small sliver of light becomes visible after decades of darkness. We'll try. Really, for every angry letter you get, there are many who are home just pulling for you, praying for your success, hoping you won't give up.

I'm typical: I was healthy on fire advanced degreed professional on the fast track one day, and bedridden in agony the next. Desperately returning to work, over and over, even though still ill. I would say," there's nothing I could have caught that can't be fixed by a week of bed rest: I SHALL REFUSE TO BE SICK." Then, collapsing, returning, calling doctors... Getting sicker. Sicker. Getting fired. I even wrote the CDC. I had no idea so many others were ill. Years later, when through Hillary Johnson I read the infamous "Dear Sirs: I am sick" letter, I froze. (Look that up.) I could hardly breathe - then I realized they had already posted that mocking letter on their bulletin board BEFORE I wrote them my account.

I'll try to hang on and be patient, and try not to die, while the science progresses. Please, scientists, don't get mad and give up. If you only knew.

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