Another Viewpoint

At this point, everyone knows the most famous CFS patient, Laura Hillenbrand.  Here's her story about living with CFS.  http://www.cfids-cab.org/MESA/Hillenbrand.html

Thankfully, I have never been as bad as Laura's worst, though I do have days where just trying to get out of bed is almost impossible, and lately, I have been developing major headaches just from sleeping.  (You read that right: I feel pretty good at bedtime and wake up with a blinding headache.  Even sleeping sitting up doesn't help.)

But Laura has one thing that I don't -- a live-in support system.  Where the bulk of my energy has always been spent taking care of fixing healthy meals, arranging grocery delivery, laundry, etc., Laura was free to spend every bit of her energy on writing her book, because her boyfriend took care of the chores.  If she's too exhausted to get to the kitchen, she gets dinner anyway; I don't.  So, I have to keep better tabs on my energy levels, to make sure that I'm not using it all on some non-essential, and then will have to go without dinner because I no longer have it in me to walk that far (only about 20 feet, but sometimes the distance feels like climbing Mount Everest).

Garbage In, Garbage Out

Thanks to Diana for providing this article from Hillary Johnson, who has repeatedly exposed CDC’s laxity in dealing with CFS. My comments follow.

Garbage In, Garbage Out

Hillary J. Johnson 19 July 2006

I applaud Science, and Jocelyn Kaiser, for refusing to take the Center for Disease Control's latest foray into elucidating chronic fatigue syndrome (CFS) at face value. In doing so, you distinguished your journal from most newspapers and wire services who covered the agency's press conference on the subject.

I am the author of Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic (Crown 1996), which first broke the story of the agency's fiscal malfeasance regarding CFS and launched two federal investigations of the agency, both of which fully corroborated my own investigative reporting on the subject.

The Atlanta agency's history with this disease has been much more destructive than the misuse of millions of dollars of Congressionally-earmarked money and the CDC’s subsequent lies to Congress, however. Things started to go terribly wrong when two inexperienced epidemiologists from CDC went to Lake Tahoe in 1987, two years after an outbreak of an unusual disease occurred there. With the publication of their first paper on the subject in 1988, which suggested that what they had newly named "chronic fatigue syndrome" was probably mass hysteria, the agency in effect declared war on those who suffer from this disease.

Soon after, the CDC compounded the damage by issuing a wildly off-base "research definition" that defined the illness according to degrees of "fatigue." Fatigue, as the agency labels the profound exhaustion approaching paralysis that is characteristic of CFS, is only one symptom among many in this multi-system disease. In doing so, the agency set serious medical investigation back by years.

Still, in the successive two decades more than 2,000 peer-reviewed articles have been published in the medical literature documenting evidence for the biological basis for this disease, according to Harvard CFS expert Anthony Komaroff. The self-serving CDC, desperately trying to bolster its tarnished reputation in this field, conveniently turned this fact on its head by claiming its new gene study was the first evidence. Traditionally, and in this latest research, CDC avoids studying patients who actually have been diagnosed by clinicians with CFS on the absurd theory that these patients probably don't have the disease. The logic is reflective of the agency's powerful belief that only its epidemiologists know what the disease is or how to define it. In this case, they avoided looking to clinicians for patients but instead sought out study subjects in a random digit-dialing effort, identifying "patients" by their degree of fatigue. But, as clinical CFS specialists will tell you, fatigue alone is hardly a legitimate marker for CFS. Very likely, the patients included in this study either don't have CFS, or they have some extremely mild form of CFS, if such a thing even exists. Even excluding the scientific failures exhibited by CDC in its highly controversial research definition, there are other reasons to disregard this latest study. Simple logic dictates that people who have avoided seeking medical help for their condition are unlikely to suffer from a severe disease like CFS, one that has been shown in peer reviewed studies, again and again, to rival end-stage AIDS and severe congestive heart failure in its degree of morbidity.

The likelihood that the CDC was even studying bona fide CFS sufferers is slim to none. As they used to say in the computer industry, GIGO -- garbage in, garbage out. Expect more of the same from the CDC where this disease is concerned.

* * * *

CDC has an even longer history of "garbage" where CFS is concerned than Johnson cites.

In 1975, there was an outbreak of a CFS-like illness here locally at Mercy San Juan Hospital. The task of investigating initially fell to Dr. Ryll. He personally knew these people to be hard-working doctors and nurses. Eventually an investigator came for one day, claimed not to be able to find anything in a cursory investigation, and CDC tried to tell Dr. Ryll that his respected colleagues were simply faking because they were too lazy to work.

In isolation, that may not be remarkable, but it starts to look suspicious when you realize that a decade later CDC also went to Tahoe for only one day and claimed not to be able to find anything, again accusing hard-working people of being too lazy to work. Once again, the total strangers from CDC (who didn’t even meet the patients!) claimed to know what the patient’s character and work ethic were like better than the people who’d known the patient for years.

Granny always told you "a leopard doesn’t change its spots", and I’ll tell you, a dedicated professional doesn’t overnight become a lazy bum. A hard worker might chuck the rat race to dedicate himself to becoming a top athlete or best-selling author, but their innate competitiveness prevents them from becoming couch potatoes. There’s nothing in lying on the couch half-watching endless bad TV to feed the competitive spirit.

Not to mention the painfully obvious: laziness is not contagious, while CFS generally occurs in epidemic form.

With the majority of CFS patients reporting it started with "the worst flu ever", it’s hard to put any credence in CDC’s claim (both at Mercy and at Tahoe) that it’s simply mass hysteria. Objective symptoms like 105 fever are pretty hard to fake; you might be able to psychosomatic a low-grade fever of 99, but not all the way up to 105. Although most patients assume it’s just the flu and don’t seek medical help, there have been many cases occurring within hospitals (including the Royal Free Hospital and Mercy San Juan) where the entire course of the disease is observed by people who verify the objective signs such as fever and have no doubt that they are seeing a contagious physical illness.

Dr. Starlanyl, who is both a doctor and a patient, suggests "if all tests are normal, maybe the correct tests haven’t been done". Dr. Ryll eventually found post-viral physical problems he called "infectious venulitis". CFS researchers have found innumerable physical problems that CDC has swept under the carpet: visible damage to the brain, viral damage in heart biopsies, verifiable immune dysfunctions, abnormal proteins in spinal fluid.... Perhaps the reason CDC couldn’t get positive test results for CFS is the same reason they couldn’t get positive test results in the early days of AIDS: there isn’t yet a blood test for the correct virus.

For reasons known only to themselves, CDC refuses to acknowledge any outside research verifying a physical origin for CFS, and continues to focus their own studies on patients who, more likely, have the symptom of "chronic fatigue"as a result of psychological problems, and not the post-viral disease known as CFS. (In fact, the disease was known as Myalgic Encephalomyelitis for decades before the CDC stuck this derogatory name on it; the World Health Organization still calls it ME, and recognizes it as being neurological in nature.)

CFS is such a unique illness that patients with no medical training are easily able to differentiate it from other fatiguing conditions when a new member joins their support group. Yet CDC, with all its MDs and PhDs, seems incapable of making the same distinctions that laypeople can – they seem to be convinced that all "chronic fatigue" is CFS, and that doing studies on depressed people who sleep a lot will produce a cure for the post-viral physical exhaustion that I (and millions of others) suffer.

I really am not sure which is worse: that government funding earmarked for CFS research has repeatedly been misused for wholly unrelated research, or that the funding that has been used for CFS research has been wasted testing patients who don’t have a CFS diagnosis. In the end, the result is the same.

CDC had a cure for SARS in 8 days;

          after 18 years, I’m still waiting!

"You should get a job"

We've all heard the stories about terminally-ill people who valiantly went to work every day until the day they died.

And then there are those disabled people who apply for Disability benefits.

I'm going to say something that some of you don't want to hear, but which the disabled community has wanted to get out for years.  The difference is not in the work ethic of the employee, but the compassion of the employer. 

Most people applying for Disability benefits would love to still be at work, but their employers don't want them any more.  Maybe it's prejudice.  Maybe they're perceived to be a worker's comp claim waiting to happen.  Or maybe they just aren't able to produce at a level satisfactory to their employer.

Once you're disabled, your chances of getting a new job – even one you're eminently qualified for – drop dramatically.  The Americans with Disabilities Act is supposed to guarantee you equal treatment in hiring, but for many disabled applicants, all it means is that the employer comes up with a reason other than your disability not to hire you.

There's also some misunderstanding in the general public about what ADA promises.  You are not entitled to a job that you cannot do on equal footing with other employees.  If the job description requires typing 85 WPM and your disability limits you to 15, you can't use your disability to get around that requirement.  The employer has every right to expect you to produce just as much as everyone else once the necessary accommodations are made.

I would love to go back to work, but the law is quite clear that the accommodations that I would need (starting with "work when able") are not considered "reasonable accommodations" under ADA.  It isn't that I didn't try diligently to get a new job, but that interviews that were going really well ended on the spot when I brought up the need for accommodations.

I've been on both sides of this story.  In 1987, I had an employer willing to keep me on the payroll, even though I was only able to work part-time and not working at full capacity when I was there.  I "bravely battled" my disease (which had not yet been diagnosed) and "was dedicated to my job".  They had the legal right to fire me for excessive absenteeism, tardiness and frequently leaving early, but chose to take care of a long-time employee who was considered an irreplaceable asset to the company.

In 2000, I was just as "dedicated to my job" and just as "bravely battling" my disease, but my employer was not as dedicated to me, and even though I was absent only 2 days because I was so dedicated to trying to work despite increasing symptoms, they fired me.  Under ADA, they were legally permitted to do so.  There was no "reasonable accommodation" possible to increase my productivity.  There wasn't even an unreasonable accommodation that would have allowed me to keep up the workload when simply getting to work left me exhausted and in need of an hour nap.

My personality didn't change in the intervening years.  My work ethic didn't change.  The only thing that changed was my employer, and my employer's attitude.  This one had an eye on the bottom line, and I wasn't contributing enough to justify my salary.

That's the reality of it.  Next time you're inclined to throw in a disabled person's face that he ought not expect Disability benefits because your cousin's neighbor worked until the morning of her final hospitalization, you should instead throw that in the face of the callous employer who fired him.  If every employer were willing to be humanitarian toward disabled employees, there would be a lot fewer people forced to swallow their pride and apply for Disability.  Employers who won't let willing disabled employees continue working to the best of their ability deserve scorn far more than those rare lucky disabled employees deserve praise for having a compassionate employer who didn't fire them in the same situation.

If every employer were as compassionate as those whose employees are allowed to continue working until the day they die, there would be a lot fewer people applying for Disability benefits.  If my husband hadn't accepted a job in another city, forcing me to change jobs, I don't doubt that I would still be employed by the firm that put people before profits.  Unfortunately, you can't legislate morality, or compassion.

And, equally unfortunately, people are always willing to assume the worst about a disabled person who has been forced to swallow his or her pride to apply for Disability benefits.  They're not lazy –  doing their very best is simply not good enough for employers to want to pay them.

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."

 

More Stress I Don't Need

I’ve had problems with the oven since moving in, so in some ways it was a relief when it gave up the ghost last week. No more setting the oven on 350 and having the smoke alarm go off within minutes because the actual temperature was over 600.

We went to a well-known store that I’ve dealt with many times and trust implicitly. My companion was a former salesman and, in fact, a former department manager for the same chain (different store); needless to say, he also trusts the company and knows their employees are trained to be honest.

I made it clear that I did not want electric ignition, and when the salesclerk tried to talk me into the more expensive model with it, telling that I could light the burners by hand during a power outage, but couldn’t use the oven, I made it real clear that this was not acceptable.

I repeatedly questioned her to be sure that the stove I was looking at operated with a pilot light ... to the point that my companion nudged me, he would have gotten very frustrated answering this same question that many times. He and I discussed at length, 2 feet from her, some of the reasons why I didn’t want electric ignition. Then I bought what she told me was the only model with a pilot light.

The stove arrived this morning, and ... it’s electric ignition! I called my companion first, then the salesclerk, who swore up and down that she never told me it was a pilot light system. Then my companion again, who confirmed that he heard her repeatedly tell me that this was the only model that did not have electric ignition. Then called the department manager, who chose to believe the salesclerk that I never said the only thing acceptable was a pilot light system and that I absolutely did not want electric ignition.

The manager did some checking, they no longer carry anything that isn’t electric ignition, and she’s not sure where I got the notion that this stove was anything but. Clearly, there was some "misunderstanding". I could see the clerk misunderstanding if I’d only mentioned it once, but I asked about it repeatedly; at some point, I should have used the right words to make myself clear.

I know exactly where I got the idea that this was the only model that did not have electric ignition – from a salesclerk so desperate to make the sale that she was willing to lie, repeatedly, several times while we were looking at the display, and one final time at the cash register, that this was what I had told her I wanted. My companion confirms he heard it, too, and she unequivocally said more than once that this worked with a pilot light, not electric ignition.

Clearly, she was using an old sales trick ... if you don’t have what they want, sell them what you have, and hope that when they get it home and find out it’s not exactly what they wanted, they fall in love with the bells and whistles and decide to keep it anyway. That gets you from no chance of getting a commission to a 50-50 chance.

So, once again, I asked the right questions, and was told what I wanted to hear so convincingly that even the professional salesman with me believed this was true. Yet another time that I wish I had been wearing a concealed microphone, so that I could prove that the problem is not that I don’t ask the right questions, it’s that people lie to me and tell me what they know I want to hear, knowing that they’re lying and hoping I won’t find out till it’s too late.

I told the manager that it would cost me another $100 to have an electrician come out to put in an outlet so that I could use my $300 stove; that’s a pretty hefty unexpected mark-up on my bargain! She was still insisting that the salesclerk wouldn’t lie, and that the entire problem was me. Offering to share the cost of the outlet might have saved the sale, but the manager was too busy defending her salesclerk to try to appease me.

At that point, I was so perturbed that I didn’t care if I had to pay ten times as much have a stove custom-made, I definitely didn’t want the stove that was delivered. (And, needless to say, that store will not be my choice to replace the washer/dryer and refrigerator that will need to be replaced in the next few years.)

Put out some feelers, found a nice one (but more expensive) at Lehman’s Non-Electric, www.lehmans.com, a company that serves the Amish and understands the notion that sometimes electric ignition is simply not acceptable. Then got a response to my e-mail that a locally-owned store has one in-stock for the same price I paid for this one.

So, going out in 111 degrees on Saturday was a complete waste of my limited energy, and most of my limited energy for today was also wasted in trying to find another source for what I thought I already bought. Fortunately, I had no work to do, so it didn’t cost me anything financially, just the ability to get a few chores out of the way. 

Oh, yeah, and now I have a headache and my upper body is so tense it hurts because what should have been a simple transaction is unduly complicated by the other people involved.

 

UPDATE ... The store manager of the original store called to let me know that the department manager has been let go for being rude to customers, and the salesgal was being spoken to sharply about the store's reputation for honesty being worth more than a few bucks commission.  He is going to refund everything, including the delivery fee, and the stove was picked up early this morning.  The other store will be delivering the RIGHT stove tomorrow.

Not innocent, no need to be proven guilty

It is the rule of law in the United States "innocent until proven guilty" ... in every court except our Disability courts. There, you are presumed guilty of attempting fraud unless and until you can prove yourself innocent.

In no other court would the word of an eyewitness be discredited or even disallowed, while speculation of non-eyewitnesses would be accorded Gospel Truth status.

My own testimony as to my symptoms was at first considered unreliable because it was not corroborated, but when I offered a corroborating witness at the next hearing, he was told he could not testify to what he had seen with his own eyes because he did not live with me, and therefore could not testify what I do 24 hours a day.

Yet, a doctor who has seen me only 20 minutes in my entire life was allowed to state without a doubt that because I could sit up for a few minutes in his office, I definitely could sit up for 6-8 hours a day. The doctors don’t live with me; why are they allowed to testify to how much I can do?

In no other court would someone be allowed to state unequivocally that something did not happen at a time they were not present. Yet, a doctor who has never spent the night at my house, who’s never seen me awake all night or being violently ill at 6 AM, says these things don’t happen because he didn’t see them at 1:30 PM, when even I say that these symptoms don’t happen. He can also say that tests that were not done would have been normal.

In no other court would the opinion of someone with no psychological training take precedence over the opinion of a trained psychiatrist. But in Disability court, a PCP who says I am fatigued because I am depressed is right, and the licensed psychiatrist who says there is no evidence of depression, though I report numerous symptoms of physical illness which explain my fatigue, is wrong.

In no other court would a thorough government investigation of trustworthiness for a Notary commission be ignored in favor of the baseless opinion that you’re a habitual liar by someone who has never met you before and has never talked to anyone who knows you personally, based solely on the fact that you didn’t say what he wanted you to.

In no other court would a judge dream of contradicting a witness’ testimony about her marital status. Yet, with my testimony that I am divorced, and no documentation indicating that I have been married at any time since filing the application, the judge nonetheless has repeatedly announced in his decisions that I went out "with my husband". Apparently, he knows better than I do what goes on in my personal life. I would propose that if I’m that addled that I don’t know my own marital status, perhaps I’m too senile to work.

Admit that on one day you were well enough to go out for one hour and that is taken as proof that you could work 40 hours a week. Admit that you walked 4 blocks to get to a doctor because you don’t drive and no cab would come for such a short distance, and that’s taken as proof that you can walk as far as a healthy person every day. Never mind that you were too exhausted to get out of bed the next day.

No doctor has ever asked me to sit up for 8 hours in their presence or do any of the tasks required by my former job ... but they all claim to know for a fact that I’m lying when I say that I cannot do these things well enough to be employed.

If you can remember your name in the doctor’s office, that’s taken as proof that you’re lying when you say you have memory problems. If you make reasonable responses to simple questions in the doctor’s office, that’s taken as proof that you’re lying when you say you have cognitive dysfunction and cannot understand the complex things that you would need to in order to work. When real tests of memory and cognitive function by a psychiatrist show problems, that’s proof you’re faking, because your PCP says you’re functional because you knew your own name.

Lawyers and VocRehab experts have told me that the accommodations I require are far beyond what ADA considers reasonable, so there’s no job available to me; the Disability judge looks only at my work experience and announces that, regardless of what assistance ADA says I can demand, there is certainly some employer out there who would be happy to hire someone with my excellent qualifications, regardless of whether I can do the job NOW.

This is the reality of applying for Disability benefits. The facts are twisted and tortured to "prove" that you’re lying. Anyone who says that you are disabled is discredited no matter what their professional qualifications or proof; the only people who are deemed credible are those that say you could work if you tried..

Would YOU put yourself through this years-long, insulting, degrading, abusive process for what amounts to less than minimum wage? Would YOU agree to be slandered and accused of Federal crimes by people who don’t even know you, so that you could get a small fraction of what you would earn if you were working?

Frankly, I’d rather be back at my desk earning $50,000 a year as a paralegal, but when potential employers notice symptoms during the interview and ask "can you really do the job?", I’m not going to lie and tell them that they are imagining the symptoms they see. I’ve tried going back to work part-time and it made me sicker. But that objective, empirical evidence doesn’t count, either, because when I follow doctor’s orders to take care of myself, I look healthy enough to work, and the judge wrongly assumes that I would still look that healthy if I were working full-time and not able to also rest as much as the doctor recommends.

Let's try again

My latest appeal of the latest denial of disability benefits has been filed, on grounds that:

1) the judge didn't have a doctor there, even after being ordered to  

2) the judge didn't address the information from friends, even being ordered to consider their first-hand observations

3) the judge mis-stated both my testimony and the doctors' conclusions. 

Personally, I would like the judge to show me any testimony or document showing that I am currently married.  He says that I went out with my husband; the way I read that day's notes, my handyman drove me somewhere that he also wanted to go.  But I guess if the judge says it's my husband, the Court of Appeal is supposed to conclude I'm not desperate for the benefits to pay my bills, since I'm choosing stay at home with the blessing of my husband who supports me so I don't have to work.  I didn't even have that luxury when I had a husband!

The judge's whole decision was based on misstatements of facts, because there ARE no facts showing that I can work full-time.  There are a lot of facts that show I can't, but those facts are dismissed by the judge as "exaggeration", no matter what source they come from.  Even one of the doctors hired to say I could return to work with no problems made it clear that I had been allowed to deteriorate so far without appropriate treatment that I would never work full-time again.  The judge also read that report to say that I could work full-time if I'd just get off my lazy butt and stop faking.

I'm told this judge has never granted benefits to anyone under age 55 for any reason.  Therefore, every one of the hundreds of cases he rules on each year needs to be appealed.  Rough calculations, these unnecessary appeals are costing you, the taxpayer, half a million dollars a year for just this judge alone.  And there are others like him.

Does anyone have the connections to start a Congressional inquiry into judges who waste far more taxpayer money on forcing unnecessary appeals than would be spent to grant all these people their Disability benefits?

What he doesn't realize is that if my goal were to get government money for doing nothing, I could have accomplished it in 9 months, with a one-night stand.  No judge or doctor has to approve your application for welfare -- just show up at the office with a baby and a birth certificate.  And, frankly, I'd get more money and better medical care if I'd taken that route.  Instead, six years later, I'm still fighting for the benefits that I'm legally entitled to, that doctors say I am entitled to, from a judge who claims the doctors said no such thing, and who, by now, has cost the taxpayers more for repeated unnecessary appeals than I'll get when I finally get the check.

Hallelujah!

This afternoon, I had a chance to appeal the fees/fines for the end results of that false police report getting me thrown out of my house last fall.

I felt dreadful (and apparently looked worse), so I took a friend with aspirations of being a lawyer to do my talking.  He made it clear that I had done everything I could to get the house cleaned, but the people who were hired to do the work didn't do what they were paid for; I was defrauded left and right, yet after paying all this money for "cleaning", now they want to fine me for not cleaning, which just isn't fair.

I spoke up only to confirm that the police were aware that this was a false police report while they were still here that day; the person who made the report had all sorts of ridiculous excuses for how she interpreted "call me" to mean "call police".  The police couldn't figure out how any rational person could make that mistake and asked if she was a kook (their word).  No, I don't know whether they filed any charges against her for false police report, or if they decided it was excusable stupidity.

We did manage to get the fees/fines reduced substantially, but someone's still going to have to pay $300.  We're debating whether it will be me, or whether it's worth the hassle of Small Claims Court to teach her a lesson about taking responsibility for your mistakes.