If you don’t like something, change it. If you can’t change it, change your attitude. Don’t complain.
Maya Angelou
I don’t like the way people with CFS are treated by the medical establishment and disability programs, and I’m doing what I can to change that.
Part of that work for change is writing this blog, bringing to light the research that proves CFS is a valid physical illness, which cannot be cured by taking anti-depressants or thinking happy thoughts. The two medications which seem to have the best results are both anti-viral medications – that’s a far cry from the assertion that CFS is all in our heads.
Another part of that work for change is helping Dr. John with his mission to flood the media with letters to the editor when they publish false or misleading information about CFS.
If it improves with anti-depressants, it’s not CFS. If it improves with exercise, it’s not CFS. Plain old garden variety fatigue is not CFS.
CFS is a post-infectious neurological condition. There’s nothing psychiatric about it. Dr. Jay Goldstein describes "limbic system encephalopathy causing autonomic dysfunction and subtle neuroendocrine derangements" and Dr. Katrina Berne cites "abnormalities of the immune system, circulatory system, central nervous system, and hypothalamic_pituitary_adrenal axis." Doctors who don’t recognize these basic facts about the condition have no business treating it. It’s my personal opinion that these doctors need to be brought up on ethics charges for misrepresenting their qualifications to treat you, when, in fact, they should be referring you to someone who does know how to treat CFS. Just because the doctor may not be familiar with your medical condition does not mean it isn’t real.– Devin Starlanyl, M.D. There again, any doctor who says that to a patient deserves to be smacked upside the head by the Ethics Committee for speaking outside his area of expertise. Untold damage has been done to CFS patients by ignorant doctors who recommend things that are, in fact, dangerous for CFS patients, and it’s time that the doctors pay the price for their ignorance instead of the innocent victim patients being the only ones who suffer.
Dr. Elizabeth Dowsett, who’s been studying CFS since it was known as ME, observes "There is ample evidence that M.E. is primarily a neurological illness. It is classified as such under the WHO international classification of diseases (ICD 10, 1992) although non-neurological complications affecting the liver, cardiac and skeletal, muscle, endocrine and lymphoid tissues are also recognized. Apart from secondary infection, the commonest causes of relapse in this illness are physical or mental over-exertion." However, she notes that researchers "should first be directed to papers published before 1988, the time at which all specialized experience about poliomyelitis and associated infections seem to have vanished mysteriously!"
What happened in 1988 to cause that mysterious disappearance? The CDC, by executive fiat, abolished the name Myalgic Encephalomyelitis and re-named it CFS, then proceeded to define the ME component out of existence! Those of us who have the ME version of CFS (instead of the fictional psychiatric version created to replace it) find ourselves, like the Man Without A Country, as patients without a disease. We don’t fit the current definition of CFS, but it’s impossible to get an ME diagnosis in the US, because that disease has been wiped off the books. Gone with the Wind. As Dr. Dowsett observes, like it never existed at all. The goal appears to have been to have all the older doctors who remember ME die off and take their knowledge with them, leaving only the new research showing that patients who have psychiatric illnesses misdiagnosed as CFS for the purposes of that research, have purely psychiatric problems.
Unfortunately for them, some of our older researchers have kept the ME name in circulation and taught it to the patient-activists. If you google CFS, you’ll also get websites that refer to it as myalgic encephalomyelitis, or draw those connections to poliomyelitis. (For the newer readers of this blog, it was noted that polio and ME traveled in side-by-side epidemics and that those who got ME were later immune to polio, leading to the conclusion that they were related viruses. Those of us born after the mid-1950s got the polio vaccine, but that protects against only the 3 most virulent strains of the virus, leaving 69 variants that can still get you. And, you guessed it, the researchers before then did surmise that ME wasa milder variantof the polio virus.)
Dr. Richard Bruno even wrote a book, "Polio Paradox", summarized in an earlier post here, which again popularized the notion that CFS and polio have a lot in common. Too many people who know the truth have been willing to speak out, unafraid, that the CDC’s emperor has no clothes: CFS is scientifically closer to ME, MS, and polio than it is to depression or malingering, no matter what CDC tells you to believe.
Ken Fujioka, M.D. of the respected Scripps Clinic in San Diego says "For a long time, we've known that viruses can get into your DNA and reprogram your body." That knowledge makes sense to doctors for everything else except CFS, which many of them still prefer to denigrate as being lazy or crazy rather than accepting that a large percentage of patients (like me) report their symptoms starting with a virus, and that similar symptoms have been shown to be caused by other viruses.
I sincerely believe that I can change attitudes about CFS by getting the facts out there. I know the truth in my own life is that exercise and anti-depressants make me sicker, which proves the problem is not depression. Even one of my former detractors, when she got as sick as I had been, found herself needing to apologize for disbelieving my reports that it was possible to be that debilitated. Some of the doctors who once laughed at CFS patients got their dose of karma when they got sick themselves.
The scariest CFS Fact out there is ... there’s no vaccine, no treatment, no cure. Today you can be making fun of us, tomorrow you could be one of us. The best health habits in the world have not been enough to protect people from this contagious disease. Using hand sanitizer every two minutes is not going to protect you if someone coughs directly in your face. So don’t pat yourself on the back and gloat that it will never happen to you because you eat right, exercise, and don’t smoke, because I did all those things and got sick anyway.
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