Saturday, March 24, 2007

Why do we need more proof?

CFS Activist Jill McLaughlin observes:
"Of course we need more research but we do not need to wait for "more
science" or the Holy Grail of a marker or the cause - even to "prove" that
it is "real." NO other illness has been held to this unattainable standard
and if we keep buying into this line of thinking we only hold ourselves
back. There is substantial objective, well-documented evidence of CNS,
immune, endocrine, cardiovascular, and autonomic nervous system
abnormalities, which indicate that it is biologically, not psychologically
determined. We need to keep pushing for recognition and utilization of what
we have and can use now, not always waiting for more".

There has been proof that CFS is real since the mid-80s when the first MRI machine in northern Nevada documented brain lesions in CFS patients similar to those seen in MS.  But that didn't fit the portrait that CDC was trying to paint, so this was not publicized.

As time went on, 4000+ research studies were done around the world: viruses were identified, viral damage was documented, neurological problems were diagnosed, and after trying zillions of prescriptions, the only one shown to work more often than not was an anti-viral.  And still there were those who put their hands over their ears, singing Lalalalala, "I can't hear you", because they wanted to find a purely psychological problem.

Any patient who insisted they had no psychological basis for their symptoms was interrogated until the doctor found the one thing, however minor it seemed to the patient, that the doctor could pounce on to yell "aha!"    When I produced diagnoses from psych experts that I had no depression or other psychological diagnosis, what I had was symptoms compatible with someone who had the flu, these same doctors found reasons to believe that they are better qualified to diagnose depression than a psychiatrist. 

When anti-depressants don't work, some doctors insist the problem isn't that there is no depression for them to work on, but because the patient isn't cooperative.  Despite the symptoms, I was still trying to work, yet I was accused of "not wanting to get better and have to go back to work".  Life would have been a lot easier if taking a pill was enough to make me feel well enough to work full-time!  If you don't believe me, YOU try making ends meet on an income of $130 a month.

The standard applied to CFS is unattainable.  They've refused to give it a more serious name until we can prove what causes it, but because of the ridiculous name they've tagged it with, it's difficult to get research funding.  What was wrong with the old name, Myalgic Encephalomyelitis?  Or name it Peterson/Cheney Disease after the two doctors who identified the Incline Village epidemic -- then the name won't have to be changed when a definitive cause is found.  But the same people who refuse to listen to any evidence that this is not a purely psychological problem also refuse to change the name to something that might garner more respect and more research funding.

And then they blame the patients when psychological treatment doesn't cure the virus.


Wednesday, March 21, 2007

It doesn't rain but it pours....

With CFS comes a cascade of other problems.

I’ll admit that my sinus headaches started in college. But those were different. They hurt, but they were not blinding, and they were never accompanied by infections. I might use them as an excuse to cut a class I didn’t enjoy, but they didn’t prevent me from doing the things I loved.

After CFS, I went from having pain around my eye socket a few days a year to having pain in my face and scalp dozens of days, sometimes blinding, sometimes on the level of a migraine, requiring me to lie absolutely still in a dark room. (One such day, my friend Peter called to cheer me up and I had to ask him to please not make me laugh, because the vibration even from a light giggle was head-splitting.) I also started having sinus infections rather than just headaches – something that was explained when I learned that CFS damages the immune system. My weakened immune system couldn’t prevent the infection the way it used to.

Soon after the CFS, I began to have problems with wrist tendinitis. Initially, it was assumed to be a result of years of production typing, but then I learned that CFS causes joint and muscle pain.

I also developed digestive problems – first thing in the morning, every single day. For a couple weeks, we thought this was morning sickness, but then came the incontrovertible indication that I wasn’t pregnant, and the problem continued. Again, eventually I learned this is common with CFS: CFS affects many bodily functions because it affects the Central Nervous System. When wrong nerve impulses are sent to the digestive tract, interesting things happen.

I started to fall while walking (tripping over a crack in the sidewalk is different from collapsing from exhaustion after doing a little too much) and to faint without warning – more neurological problems.

In December 1987, I couldn’t make sense of what I was reading, or remember things, or tell time, or do simple math, or find the right word when speaking. I was sure I’d just become world’s youngest Alzheimer’s victim (though I’d never heard of someone going from above-normal to advanced dementia in a matter of months, but if I was going to set records for age I might as well set records for speed, too), until I learned this was just another symptom: the virus that causes CFS also causes lesions in the brain, and Dr. Sheila Bastien has developed a neuropsychological "signature" for CFS that verifies that some partsremain untouched and other functions (like math and memory) are "worse than patients with traumatic brain injury". Apparently thanks to my age and gender, I did eventually recover most of that function, only to lose it again when I relapsed in 2000. At this point, at peak efficiency, I can pass for normal for a couple hours, but I can’t sustain peak efficiency for an 8 hour work day, not even with a long nap in the middle.

At first, some doctors mocked CFS as beyond credibility because patients complained of "every symptom under the sun", but then a neurologist clarified that every symptom on the list could be caused by Central Nervous System dysfunction. (As one of my teachers warned us, "a little learning is a dangerous thing", and never more so than when it’s a generalist who scoffs at something without consulting a specialist who knows that it’s not as bizarre as it sounds.)  If it were truly imaginary, some of those patients would be slipping in symptoms that aren't neurological in nature, but the symptom list remains consistent.

Quite early on, Dr. David Bell observed that whatever the cause of CFS might be, it was something that affected every organ without causing organ damage; and certainly the nerves touch every inch of the body. If you’re just feeling around looking for a swollen liver or enlarged spleen, you aren’t going to be able to feel a nerve dysfunction. But most doctors don’t think to do a nerve conduction study on someone who has digestive problems: it’s easier (and cheaper) to pin the blame on their diet or their stress level.


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Monday, March 19, 2007

The Politicization of Illness

Further to Mary's comments yesterday about the way the government committees approach and disparage CFS and CFS patients, read

Dr. David Bell, who treated the 1984/85 Lyndonville epidemic, commented about CDC:  they could have made one worthy contribution: they could have prevented the skepticism that now rules supreme in the medical profession at large. All they needed to do was admit, “Yes, these people are ill.”

Instead, the head CDC researcher into CFS originally made statements that the problem was these were simply depressed menopausal women ... which I'm sure was news to the parents of the 5 year old patients and the wives of the male patients! 

Then, instead of saying that this epidemic had a great deal in common with the brain disease Myalgic Encephalomyelitis, CDC decided to re-name it "Chronic Fatigue Syndrome", with the expressed intention (documented by their own memos via a FOIA request) to make it sound frivolous and unworthy of Disability benefits.  They succeeded: many, if not most, CFS patients are denied the benefits they are legally entitled to.  Most of those who succeed in getting their benefits get them for co-existing conditions, like depression or arthritis, rather than for CFS. 

In 1995 -- 12 years ago -- Dr. Mark Loveless, an infectious disease specialist who runs an AIDS and CFS clinic at Oregon Health Sciences University, testified to Congress that a CFIDS patient "feels every day significantly the same as an AIDS patient feels two months before death". His statement was supported by data from clinical research conducted at OHSU and by the experience of other CFS experts.

Yet, even that expert testimony based on objective data did not convince CDC to stop insinuating that the problem was minimal and purely psychological.  It was not reported in the mainstream media, so it didn't do anything to change the minds of the general public, either.

Even when, a year ago, CDC reported having found objective biological evidence of CFS, they in the very same press conference reverted to their old ways of stressing "stress" as the cause, rather than the virus documented by numerous non-CDC researchers and reported by most patients.  By slipping that word into the press conference, they ensured that the psychobabble connection would continue to be reported, and, in fact, one of the stories carried in newspapers nationwide skimmed over the biological evidence to continue to perpetuate the myth that patients are just emotional basket cases with no biological reason for their symptoms.

Doctors who were only half-listening (if that much) pooh-poohed the idea that a virus you had months ago was causing problems now; what I actually said was that I had problems continuously since the virus in February, not "I had a virus in February and my problems started in November".  It was in November that the problems got bad enough that I had to stop working because of them, but I had never returned to normal after the virus. 

And again a dozen years later, when I relapsed so severely that I lost my job, the doctor never quite got it that I had never returned to normal after the virus, and tried to find more recent reasons for the symptoms instead of acknowledging that the effects had been continuous since the virus in February 1987.  In remissions, I felt "better", but I never felt "normal"; even in remissions, I had to take precautions and watch my energy expenditure.

But, encouraged by the CDC's stance that the problem was purely psychological, that doctor took the view that I say I have CFS to avoid the stigma of admitting to mental illness by saying it's depression.  Frankly, nowadays, most people understand that depression is a biochemical problem and not a character flaw, so there's a heckuva lot less stigma to depression than there is to CFS, which (thanks to CDC) is still viewed as laziness more than an actual biologically-based illness. 

The real irony here is that if I had filled out my Disability paperwork claiming depression (or any other mental illness), I'd have been approved pretty quickly on my word alone; but because I said I had CFS, my word wasn't as believable as that of a crazy person!  The judge keeps sending it back claiming "no objective evidence" ... what objective evidence is there that the guy babbling religious drivel on the street corner isn't putting on an act and is perfectly normal once he's home?  In fact, I have objective evidence -- blood tests and orthopedic problems that can't be faked -- but the judge doesn't want to acknowledge it because he's blinded by the initial diagnosis of CFS.

The big political question here is, if CDC continues to ignore tons of biological evidence and claim the problem is just people who can't handle a little stress, why has Congress not stepped in to do something about it?  Remove all the people who unreasonably continue to espouse a psychological cause and replace them with researchers who will acknowledge that there's ample biological evidence, that anti-depressants have repeatedly been proven useless, that the only medications which have shown promise are anti-virals. 

A virologist is better-suited to researching this illness than someone whose acknowledged expertise is in Effects of Stress, yet that is who CDC currently has in charge of researching CFS.  There's an old adage, "if the only tool you have is a hammer, everything looks like a nail".  And if you want to see stress (or depression), you will hammer the facts until they fit your paradigm. 

One of my doctors carefully eliminated reference to any symptom that wasn't compatible with the depression diagnosis he desperately wanted to make.  If I didn't have the fever, then I didn't have CFS.  If I didn't have the swollen glands, then I didn't have CFS.  If the only symptom he noted was fatigue, then I <triumphant shout> had to have depression!  Small problem ... my contemporaneous notes indicated I had far greater problems than mere fatigue.  I offered to stake my notary commission (which required an extensive background check for character and honesty) on the accuracy of my own notes, and friends verified that they had observed some of the objective symptoms I noted, whereas they had never seen or heard anything that led them to believe I was depressed. 

All my friends have received 3 AM e-mails that prove that I may collapse into bed at 5 or 6 PM, but I do not sleep straight through to 7 or 8 AM as the doctor's notes indicate.  Until I got some fairly strong sleeping pills, I was sleeping in 1-2 hour increments, not 15 hours at a time.

It's the things that are left out that are the most important!  And the political version of this illness leaves out the initial virus, leaves out the proof for 20+ years of brain lesions, leaves out the viral damage to the heart muscle, leaves out that all the symptoms are not a "random collection of every symptom known to man" but are specifically those which can be caused by a Central Nervous System dysfunction.

We need to demand that responsibility for the illness be turned over to an appropriate person with expertise in virology or neurology, instead of people who will use psychobabble to explain away symptoms that are demonstrably rooted in biological and neurological factors.
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Sunday, March 18, 2007


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 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