Thursday, May 17, 2007

First CFS Detractor Dies

The CFS community bids a less-than-fond farewell to Dr. Stephen Straus, who passed away from brain cancer this week.

In 1988, Straus commented that CFS was a "psychoneurotic condition", and he spent the remainder of his career trying to prove it.

In researching what was then called "non-HIV AIDS", Straus found serious depletion of T4 cells.  He nonetheless clung to the notion that this was a purely psychiatric condition, a rather odd stance for someone whose training was in virology.

His 1992 study demonstrated statistically significant, abnormally low levels of the critical hormone cortisol, precisely the opposite result that would have been expected if his theory of psychological causation had been accurate.

Straus demonstrably ignored the results of even his own research when it contradicted his prejudiced beliefs about the cause of CFS.

Straus's psychologic theory called for patients to heal themselves by reducing stress.  However, Professor of Psychology Phyllis Chesney observes "I believe that CFIDS and other disabled patients are often subjected to a level of stress that is more than a healthy person can bear. It is stressful to be forced to cash in your life insurance policy, mortgage your home to the hilt, spend all your savings, borrow from everyone you know, be denied your rightful health and disability benefits or forced to fight for them precisely when you are totally incapacitated."

Professor Chesney continues "As a professor of psychology, a psychotherapist and courtroom witness, I am an expert in how frequently women are diagnosed as mentally ill when they are not. When I first explored sexist bias among mental-health professionals in Women and Madness in 1972, I did not realize that when western medicine does not understand and/or cannot cure an illness, it first denies that the illness is real by saying it is merely a psychiatric disorder. Once asthma, arthritis, lupus, multiple sclerosis, Lyme's disease, allergies and Gulf War Syndrome too -- were dismissed as primarily psychiatric in nature."

As technological advances led to the development of objective evidence, asthma, arthritis, lupus, MS, etc., were accepted as legitimate medical conditions.  Theoretically, the same will eventually occur with CFS as the objective medical evidence becomes more widely-known. 

Yet, Straus's legacy remains in the number of people whose only knowledge of CFS comes from his numerous public declarations that we're all (regardless of age or gender) "depressed menopausal women", "psychoneurotic" and "hypochondriacs".  Only within the CFS community is it common knowledge that his own research proved him wrong.

As Prof. Chesney observes, many doctors will apply an erroneous mental illness diagnosis to a female patient rather than admit that they don't know what's wrong.  It's been proven true time and again in the CFS community: seriously ill women are quickly labelled as depressed or hypochondriacs (whereupon the search for a physical cause for their symptoms ends) while less-afflicted men get a full medical work-up.  Thanks to the 25-30% of CFS patients who are male, we know that the real problem is, according to the virologist who discovered the AIDS virus, "a virus we don't have a test for yet"; we know that brain scans find lesions similar to those in MS; we know the symptoms all have a neurological explanation.

No thanks to Straus or his hand-picked successor, a stress expert who also espouses a psychiatric explanation even when it requires him to ignore vast amounts of research proving there's a virus involved.

It's rather fitting that the man who insisted that our symptoms were all in our heads died of a problem that was all in his head.

Tuesday, May 15, 2007

Just the Facts, Ma'am

A man should never be ashamed to own that he is wrong, which is but saying in other words that he is wiser today than he was yesterday. – Alexander Pope

The fact that an opinion has been widely held is no evidence whatever that it is not utterly absurd. - Bertrand Russell

Once upon a time, there was a viral illness called Myalgic Encephalomyelitis. Which shares part of its name with Poliomyelitis, and frequently occurred in epidemics side-by-side with polio.

Then came the plan by CDC to change the name to the benign Chronic Fatigue Syndrome, so they wouldn’t have to admit there was another viral epidemic so soon after AIDS. Decades of research into ME was swept under the carpet, and CDC set out to convince us that all these patients – even the men, children and 20-something women – were simply depressed because they were menopausal.  That the only problem was fatigue, and that none of the Central Nervous System symptoms were real.

The problem is that CDC can mandate what it’s called in the US, but has no authority in the rest of the world, where it continues to be called by its proper name. And doctors in those countries continued to research post-viral ME.  Some CFS patients got advanced scans showing viral damage, brain lesions, and Central Nervous System dysfunction.

Dr. Anthony Komaroff of Harvard now counts 4000+ studies worldwide showing biological abnormalities in CFS/ME. Yet there are still those doctors and disability judges who stubbornly cling to their absurd opinions that CFS patients are faking, or depressed, or mentally ill, and could go back to work if they'd simply get counseling.

These patients return from a psych evaluation with a clean bill of mental health and the doctors and disability judges still refuse to believe that the patient is mentally sound, but suffering from a virus.

These patients see other doctors who do specialized blood tests proving there is something very wrong, and the doctors and disability judges refuse to acknowledge that those test results exist.  (In my disability decisions, there is not one word about my blood tests.  The judge could not continue to maintain that there is nothing wrong with me if he told the truth about those tests, so he doesn't mention them at all.)

Instead of admitting that new technologies that allow us to find scientific proof of biological abnormalities makes us wiser than we were, some people cannot allow themselves to be proven wrong. Like the Flat Earthers, they ignore any evidence they don’t like.

That the opinion that CFS is fakery was widely held is not evidence that it is not utterly absurd. 4000+ studies prove that it is absurd. The wise man would admit that the facts prove his initial impression wrong. But for some people 400 million studies would not be enough to get them to change their minds.

Our only hope is that as the evidence becomes more widely known, these people will find themselves laughed at the way they once laughed at CFS patients.

Fan Mail

A fan letter from the president of a health blogging site:

"I read your blog. You are an articulate writer and rightfully passionate about your topic. Though I am more familiar than most, with the issues surrounding CFS and Fibromyalgia, I learned quite a bit for the time I spent reading."

Then he invited me to become a guest author on his site.

For each person who has complaints about the blog, there are several others who think it’s great, including a couple who’ve invited me to write for their websites. I must be doing something right to be getting those invitations.

Unfortunately, for all the success that Steve’s consortium of activists (me included) are having with getting people to read and send out the annual Request for Congressional Action, there are still those stubborn people who refuse to accept the truth that CFS is caused by a virus, not a screw loose, and still keep telling us to just "stop whining and go back to work".

The problem isn’t that we lack the incentive to go back to work, but that the ADA says we’re not entitled to the accommodations we need. In the real world, it’s not enough to show up at the office, you have to be able to do the work. When you’re having paralytic muscle weakness, you can’t do manual labor, and when you’re having "fibro fog", you can’t do brain work. I’ve known CFS/fibro patients who were so affected by fibro fog that they couldn’t put together a simple sentence; they couldn’t function in a job that requires them to read or to write memos. At my worst, I have had days when I could not remember how to shape numbers and letters – I couldn’t even function in a receptionist job because I couldn’t take a phone message. And that’s not counting the fact that the law says needing rest days during the week makes me "disabled". Technically, 12 years ago when for a few months I had to take every Wednesday off in order to be able to make it to work Thursday and Friday, I fit the court’s definition of "disabled", excessive absenteeism, even though I was functioning adequately the 4 days a week that I was there.

As long as there are people who won’t acknowledge that they’re wrong, that there are objectively testable neurologic and immunologic abnormalities proving CFS is a biological illness, there will be a need for activists to speak out. As long as there are doctors who cling to the idea that post-viral CFS is really just a psychiatric problem that can be cured with anti-depressants, there will be a need for activists to educate them that anti-depressants are useless; anti-virals have been proven to help.

For as long as that takes, I’ll be here.

Sunday, May 13, 2007

Medical Miracles

We’ve become so accustomed to medical miracles that we tend to assume that people are only disabled because they don’t want to get better.

Certainly, I’ve been accused of it myself.

In the first few years of being off work, I did everything I could to get better: I ate healthy food, did as much walking as I could tolerate, took vitamins and any non-prescription remedy I could get my hands on, slept as much as I could, and tried, desperately, to get well. The missing component, though, was the one that I had no ability to do for myself: the pain and sleep problems were far in excess of what could be treated with non-prescription remedies. I needed a prescription and my repeated requests fell on deaf ears.

Someone suggested that I could get my hands on Benadryl, which is the active ingredient in some sleeping pills, so, just take a couple more every hour until I found the dosage that would let me fall asleep. I tried it. I had an interesting out of body experience, but I didn’t get any sleep that night.  I needed something stronger than even half a bottle of Benadryl.

I have been fighting sinus headaches for 30 years. I have one today where my sinuses are so swollen that my teeth and jaw hurt, too. There again, I have done everything that I can – I moved from a cool damp climate to a warm dry one, and stay indoors almost 24/7 half the year during rainy season and allergy season, but all my bedtime preventive measures last night didn’t prevent me from waking up at 1:15 AM in severe pain. By that point, my face was so swollen that I couldn’t stand the weight of the heating pad on it. With that much pain, I never did get back to sleep.

I already know that Urgent Care will not give me a prescription for anything unless there’s an infection; if my sinuses are just swollen, as they are today, they’ll send me home with instructions to do what I’ve already been doing: I’ve rubbed a liquid pain reliever on my gums, taken Advil, inhaled VapoRub, put a heating pad on it, and given it hours to ease up. If anything, it’s worse than it was at 1:15 AM; it’s spread from my sinus and jaw upward to my eyes and temples.

The first time I had a sinus headache this bad, I went to the dentist and had the most-painful tooth pulled. The tooth was in perfect condition, not even the beginnings of a cavity; as soon as the dental anesthesia wore off, we realized the problem had never been the tooth ... the sinus was still swollen and the teeth around the extraction still hurt. I could have all the teeth on that side pulled and still be in pain, because the problem is the swollen sinus that Urgent Care won’t do anything about because it’s not infected.

A friend with similar problems told me her doctor did surgery to give her some relief. That’s something I can’t do for myself, and if your medical plan requires that your PCP give you a written referral to the specialist, and the PCP won’t write that referral, you can’t get the surgery, even if you offer to pay for it yourself. And without the surgery, there’s no relief.

People who rehab after serious accidents don’t do it themselves. They don’t crawl out of the wrecked car and go directly home: they get weeks of medical care in hospitals and physical therapy. If they need prosthetics to help them function, they get them. On the other hand, CFS patients are typically sent home with the erroneous information "there’s nothing we can do for you", and then blamed because they cannot return to work without the proper professional help. The assumption is made that the patient doesn’t want to work, not that the doctors aren’t able to help.

Eventually I did get an effective sleeping pill. After a few months of sleeping properly, my immune system revved up enough to start attacking the virus that, uncontrolled, was making me sicker and sicker. No amount of valerian, hot baths, warm milk, or relaxation CDs (or combination thereof) had been able to get me to sleep in the previous three years because the problem was too complex for a simple solution. That proved my point that if a doctor had been willing to give me a prescription sleeping pill, instead of excuses, I might have been able to get well and go back to work. I’d done the best I could with the things available to me without a prescription and none of them were strong enough for the massive intervention I needed.

The same thing with pain pills. Hot baths, heating pads, enough Advil to give me an ulcer ... nothing I could do for myself was strong enough. According to Jeanne Hess, RN, the best time to take a pain pill is at Level 3; if you wait till you reach 4-of-10, it may not work. I was dealing with 7,8,9 and 10 with nothing stronger than Advil; for most of a year, it never got down to a 3 where I had the best chance of nipping it in the bud. Yet even reporting Level 7-10 was not enough to get me a prescription pain pill. It’s been suggested that the fact that I made the super-human effort to walk into the doctor’s office (instead of hiring a man to carry me in) and approached the doctor rationally instead of screaming were probably factors in not getting the needed prescription. A doctor who stereotypically expects men to be stoic and women to be helpless and in tears isn’t going to believe that a woman is in severe pain if she’s not hysterical and is stoically standing on her own two feet through sheer willpower.  But I’ve gotten false diagnoses of emotional problems while showing no emotion at all, so I didn’t want to burst into tears and give them more justification for writing "depression and anxiety" in the records when the real problem was neurologic pain, or be carried in to support the theory that I’m just looking for excuses to have someone do things for me because I’m too lazy to even walk.

It took 7 years before I got a prescription pain pill. Again, the change wrought by something that I could not obtain without the complicity of a medical professional was significant.

Medical miracles require a combination of medical help, luck and patient persistence. But without the first one, it’s highly unlikely that a patient will be able to cure herself of something as disabling as severe CFS.  I managed to keep myself out of the hospital, which is a miracle in itself, but once the doctors let me deteriorate as far as they did without proper medical treatment, the self-help I could do was more a matter of not getting worse than of getting better.

This Awareness Weekend, let’s put the blame where it belongs: on the pharmaceutical companies that haven’t come up with a magic pill, on the FDA who haven’t approved the one thing that has been shown to help CFS, on the doctors who think that writing "depression" in the file relieves them of any further responsibility to find something that helps the patient. But let’s stop blaming the patient for not being able to get better when the things they need to get better aren’t available to them. If I could have written my own prescriptions for sleeping pills and pain pills, I have no doubt that I would’ve been back to work full-time in a few months.

It’s never right to blame the victim for things beyond their control. I did right all the things that I could, but there were many things I had to rely on others to do for me, not the least of which was writing prescriptions for the things theexperts say will help.