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By Mike Reynolds

From Fall 2014 Forum

I’ve been sick for well over 20 years although it took a few years to be correctly diagnosed. I was diagnosed with the only name that existed at the time: “myalgic encephalomyelitis” (ME). That was in the early 1980’s before our own National Institutes of Heath called it “CEBV” for years until Epstein-Barr was proven NOT to be causative and, embarrassed, they handed the problem over to the CDC who knew exactly what the illness was but didn’t want to admit it so they made sure a committee would rename it with the frivolous sounding name of chronic fatigue syndrome. So, if they knew what the disease was, why didn’t the FDA find a way to help these people? Well, the NCF found the answer to that years ago and, a few years earlier, others knew exactly what ME was and probably know just how to treat it but they, just like every other advanced country on the earth, didn’t want people blaming them so they kept it quiet and continued to treat it frivolously. The activists were present in the 1980’s but, since that was such a long time ago, the ones diagnosed after the new millennium thought they were the first to speak up and demand answers. They even demanded that the FDA approve something to help and, like every other area, didn’t do their homework to find out what had already been found out. Instead, they demanded that Ampligen become an approved drug for CFIDS/ME.

Ampligen is not only a drug that has not been successful for many patients who have CFIDS/ME, but has actually worsened many of them! There’s a physician on our Memorial List who was so sick. Finally, she got to take Ampligen and she worsened so much more that she took her own life. Even the first patient that was put on Ampligen, the late Nancy Kaiser, only found it helpful the first year and then found it made her worse. She was warned that if she went off Ampligen, she’d die but, as it kept making her worse and worse, she did go off. She lived for many, many years after that. She suffered, of course, because she had CFIDS/ME, but she felt better than Ampligen made her feel after that first year.

So are all the drugs safe that our own FDA approves? There’s a group online, Truthout, that gives you the honest truth about many things. Truthout interviewed a former FDA drug reviewer, Ronald Kavanagh. The FDA drug reviewers are supposed to test new drugs to see if they are both safe and effective before they are approved. Well, Kavanagh was used to being truthful but found out the FDA was really more like the mafia! If a drug was dangerous but came from Big Pharma, he found out he was not supposed to tell the truth! Instead, he found he was supposed to merely pretend to test the drug and then rubber stamp it. He even mentioned being told not to read certain sections of the safety data. When he objected, he was threatened with prison! Actually, one FDA manager even threatened the lives of Kavanagh’s children! So does Ampligen really help us and should it be approved? Well, if one has been reading what other patients had to say about the company that makes Ampligen and about the drug, itself, they’d never insist that the FDA approve the drug.

Many, many years ago, Robert Huntington wrote an article for the Forum that was titled “Why Ampligen Could Be Harmful.” The inventor of the drug, Leo Einuk, admitted in a patent that the drug could be harmful to any patient who took it because it actually increases Tumor Necrosis Factor (Patent # 5,763,417). You sure don’t want to increase TNF no matter what disease you have as TNF, as Huntington wrote, “breaks down muscle mass. TNF causes inflammation” and, if taken long term, “is known to cause cachexia, an extreme wasting and weakness.” And, yes, the manufacturer, Hemispherx BioPharma, funds the IACFS and funds their Primer which is why the IACFS refuses to be truthful.

Why, then, do some present-day advocates, still want Ampligen or, for that matter, insist that the FDA approve some helpful drug for CFIDS/ME? The FDA-approved drugs actually kill 106,000 Americans every year! Who said that? It was formally written in the Journal of the American Medical Association fourteen years ago by Dr. Barbara Starfield. That’s the same journal that got tricked by the new name, “CFS”, way back in the 1980’s and then had to apologize when they thought it stood for a newly classified mental disorder. Since then, they’ve refused to accept any article on this illness. The FDA, recently, has had meetings on “CFS” to appease the outspoken patients that, with the help of the computer, get their message out to so many more. It’s time for those PWC/ME advocates to understand that a lot of facts have been discovered through the years even before the computer age and scientific facts should never be ignored even when one’s own government has a habit of hiding facts. The FDA, like all government agencies, cannot be trusted when it comes to CFIDS/ME and neither, unfortunately, can most well-meaning and courageous advocates.

The National CFIDS Foundation * 103 Aletha Rd, Needham Ma 02492 *(781) 449-3535 Fax (781) 449-8606