By Doug F., Ph.D.

From Spring 2011 Forum

I've been an member of the National CFIDS Foundation since 1998. I read your factual and carefully referenced material every three months. I suppose, like most patients, I have to reread each issue several times to have important information sink in. I highlight parts, write in the margins, and even make copies of a few articles. My small pile of Forum magazines is getting quite high and each one seems packed with more information.

A few weeks ago, my brother-in-law told me he'd met another patient who'd been sick for about 6 years. he told this other patient that I'd been sick for more than 30 years and the patient went on and on about how exciting it was that the cause had finally been discovered! When he questioned this patient further, he learned this woman really believed that a retrovirus had proven causative and that a cure was just waiting for FDA approval! He asked me if he could give this woman my name and telephone number as it was fairly obvious that she believed a lot of things that were totally untrue and knew nothing about actual fact and little, if anything, about the history of this disease.

The woman called me and explained that she was a most severe patient that was finally forced to go on disability. She had to curtail her daily walks to shop recently and was sure she was the worst patient I'd ever heard of. I invited her to come visit me as she was still able to go out and I wasn't in that position any longer. She turned out to be a really nice person filled with erroneous information that she had gleaned from multiple hours on the internet.

"Amy" (I don't want to use her real name here) was correctly diagnosed but had absolutely no idea that so much science on this illness had been proven years ago. Just visiting with me made her aware that she was far, far from a very "severe" patient as I explained that even I, who was so much worse than her, was not in that category since I wasn't totally bedridden. She learned that scientific fact is just that --- facts that have been proven and have to be accepted by all. She brought me a printout of the synopsis from a recent Europeon conference and I pointed out how the people who were written about had said that they "felt", their information "pointed to" and even the testing was being "worked on". When I told her that many abnormalities had already been proven and so many other "causes" had already been disproven, she was shocked. She really had believed that this retrovirus that couldn't be replicated was the first thing that any scientist had ever suggested as a cause!

"Amy" thought the recent groups that had begun advocating were the very first advocates of this illness! When I told her that advocates had gone to D.C. and seen visited congressmen and senators in the 1980's instead of merely putting an advertisement in a newspaper, she was incredulous. She wrote down a list of books that I suggested she should read when I told her that a lot of information had been proven since that time and things like the online crusade to urge patients to vote for a certain thing so prize money could be awarded to certain bloggers are ridiculous as they, themselves, can't admit to or, perhaps, understand some of the science already replicated and proven. She asked me why and I told her that the "why" was just the world always had functioned. Discoveries of things happened and it took not just years but decades for it to filter down to even the medical profession and I gave her some examples of some that occured in history.

"Amy" told me that two months ago she had undergone some simple oral surgery and had a terrible reaction that had forced her to be bedridden with a fever for days. I asked her what anesthesia she had and she said, "Sodium pentathol." I explained to her that it was the anesthesia that had created the adverse reaction and told her about the ciguatera epitope and the anesthesia protocol. She asked why, if it was already proven science, did others never mention it. I had no answer for that. I told her how quietly the government had accepted the work as scientific fact and I could muse upon the reasons that patients worldwide didn't understand the work or even know about it but I really had no valid answers.

"Amy" was already a member of the largest charity for CFIDS. When she understood that size didn't matter and how some charities would sell their souls just to make more money, she decided to join the NCF and to let her current membership with the other group lapse. That got me thinking about all the patients that my brother-in-law would never meet and how many of them would go through life not knowing when the National CFIDS Foundation meets its goals and goes out of existence. Would other "Amys" go through life not knowing answers had already been found? I guess I have to be grateful that I, at the very least, was able to educate "Amy" along with my family and my personal physician who, incidently, reads every issue of the Forum.

Doug is a long term patient who lives in Pennsylvania.3