On the subject of government CFS conferences, MaryS writes:
"I've sat in these meetings and conferences for twelve years, and that's the behavior I've seen by these people. ... they can be unspeakably rude to people who are seriously and severely ill. Some of the things I've heard said to Tom Hennessy would take your breath away, they're so rude. Here's a guy in so much pain he can hardly stand, and they openly mocked him. I remember my mother (who came to a meeting to push my
wheelchair) saying to me, "What's the matter with these men? Why are they treating a patient like that?" She was appalled. Anybody would be. ... Would they be allowed to do that in a roomful of patients with heart bypasses? Or lung cancer? The disrespect they have shown patients with our disease - to our faces - is breathtaking."
I have to agree with Mary. I have been verbally abused by people who are utterly solicitous as soon as someone mentions they or a relative have cancer. Someone who is able to continue working nearly full-time while getting treatment receives tons of sympathy, but someone who is completely unable to work and is getting worse because the doctors refuse to give her the proper medication gets nothing but disrespect. Why? Because these people are stuck in the 1950s when cancer was an automatic death sentence; by contrast, CFS is often seen as just a minor inconvenience.
There are a number of cancer patients in my family, and I will respectfully point out that every single one of them received IMMEDIATE treatment of the proper sort, without having to first "prove" that they were not just depressed or lazy or trying to avoid having to work. Those who applied for Disability benefits got them immediately -- they didn't have to wait years to be approved, while being accused of scamming the system at every turn. No one told them that they didn't "deserve" Disability benefits until they were totally destitute and homeless, nor suggested that "if you don't want to work, marry a rich man" (as if any rich man would settle for a wife who's already nearly bedridden!).
I will also, with all due respect to cancer patients and their families, point out that in this day and age, if it's caught early enough, most cancer is curable. I know quite a few people who have been declared "cured" of cancer, including my own father. On the other hand, I know precisely ZERO people who have been "cured" of CFS, and Dr. Dan Peterson has given that same statistic on CNN. There were a couple of occasions where I thought I'd been in remission long enough to be cured, and just when I got that cocky, the virus kicked me squarely in the butt and I relapsed.
People feel free to "diss" CFS patients because they don't see it as a "real disease". Whenever (and wherever) I post the quote from the director of the Oregon Health Sciences CFS/AIDS clinic that CFS patients are more disabled than AIDS patients, I get a ton of verbal abuse, how dare I say that?! Except that I didn't say that ... it was said by a doctor who has treated thousands of patients with CFS and AIDS, and is based on his own observations. It's not me dissing AIDS patients, it's a medical expert who has seen with his own two eyes that AIDS patients are more mobile, more active, more able than CFS patients until shortly before death. CFS patients become disabled sooner and stay disabled longer than AIDS patients, and that's a fact.
Yet, despite the number of symptoms they share, AIDS is generally viewed to be a "real disease" and CFS isn't.
Same thing with MS. It shares most of its symptoms with CFS, and there's even some research implicating the same virus in both. When another member of our church was diagnosed with MS around the same time that I was diagnosed with CFS, she was fawned over and I was taunted "CFS, that's another word for laziness?" We had almost the exact same symptoms (the only difference: where I had serious digestive problems, she had double vision). Hers were real, mine were deemed figments of my imagination. I was puzzled ... there is no way for another person to confirm double vision, you have to take her word for it, but it's very easy to someone else confirm that I really did get up every morning and threw up, then had diarrhea.
And then I went to work; she stayed home. Which of us was "too lazy to work?" Wasn't me. I was working. 20 years later, I still am working. Maybe not full-time, but more hours than a lot of other people who quit working the day they got their diagnosis (whether that diagnosis was cancer, MS, or something else) with the intention of enjoying their remaining days. And with their "serious" diagnosis, they didn't have to prove anything to get Disability benefits; it was simply assumed that they couldn't work because they had that diagnosis.
CFS patients who are essentially bedridden have been told by Disability "you could work if you tried". I know, because I was one of them. Showed up for the hearing with a barf bucket, spent the whole time with my head down on the table because I was on the verge of passing out, visibly had a fever (which was, at that point, in its second month nonstop, and lasted six months in total), could barely speak due to sore throat, and at the end of testimony from both me and a witness about the severity of my symptoms, the judge denied my application and then chirped up "State VocRehab can find you a job."
No, they can't. They don't create jobs where you get a paycheck for showing up sporadically and doing nothing; you must be able to maintain adequate attendance (which I can't) and perform actual work when you get there; if I'd shown up to a VocRehab appointment in the same condition as I went to that Disability hearing, they would have sent me home to get healthy before they'd waste time trying to find me a job. Several VocRehab experts have testified that I am unemployable; that, too, is not just my opinion, but what the experts say.
People who've verbally attacked me have admitted that they wouldn't say the same things to cancer or heart patients, "but that's different". Their explanation comes down to the notion that cancer is real, and CFS isn't. Or the misconception that no one has ever died from CFS ... google names like Casey Fero and Sophia Mirza, and the hundreds of nameless patients who got tired of having to put up with verbal abuse on top of severe disability and simply took their own lives because they couldn't stand it any more.
A quarter-century into this epidemic, the physical damage is reaching the point that people are dying from CFS. Dr. A. Martin Lerner has found viral damage to the heart. Dr. Paul Cheney gave a lengthy interview (on www.DFWCFIDS.org) about coronary insufficiency in CFS, stating that CFS patients are "on the verge of heart failure". Casey Fero's autopsy showed that his heart basically exploded. So the argument that CFS deserves no respect because it doesn't kill people is wrong. It just doesn't kill people as fast as cancer.
And anyone who says there's no way to prove someone with CFS has anything wrong with them clearly is unaware that in the mid-1980s doctors were already discovering abnormalities in brain scans. I haven't had a brain scan, but I have had a blood test the doctor described as "sky high", which indicated some sort of systemic infection (that test should have been followed up by a test to identify the specific infection).
As Dr. Devon Starlanyl says, if "all tests are normal", then perhaps the proper tests haven't been done. Unfortunately, the tests that would show CFS are either new and/or uncommon and/or expensive, so doctors either don't know to order them or don't want to order them because of the cost. But that doesn't mean that CFS can't be proven. There are plenty of tests that would prove it, if those tests were done.
But AIDS patients felt well enough to organize and attend ACT UP events; CFS patients, who are too sick to do that are viewed as apathetic. Our inability to muster a huge protest crowd is seen by some as proof that we know there's nothing really wrong with us ... not that we are putting every ounce of energy into existing and don't have the energy to travel to a central location and march. March?! Some days we're lucky if we can make it the couple feet to the bathroom, and you want us to march across town and spend a couple hours rallying on the steps of the Capitol? (We've joked that a CFS rally should be billed as a "sleep in", because all but the few in remission would be too exhausted to do anything more after travelling to the rally.)
The facts prove that CFS is a real disease, with real biochemical abnormalities, and real physical damage. CFS patients deserve respect as much as any other patient with any other incurable disease, and for the same reasons.
THE EXPERTS SPEAK ON DISABILITY:
Dr. Mark Loveless, an infectious disease specialist and head of the CFS and AIDS Clinic at Oregon Health Sciences University, proclaimed that a CFIDS patient "feels every day significantly the same as an AIDS patient feels two months before death."
Dr. Daniel Peterson's Medical Outcome Study revealed that no other set of patients had ever measured so poorly. CFIDS patients experienced greater "functional severity" than the studied patients with heart disease, virtually all types of cancer, and all other chronic illnesses.
This disease is actually more debilitating than just about any other kind of medical problem in the world. –– Dr. Leonard Jason
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