Wednesday, July 4, 2007

CFS in Simple Terms

(Dr. Klimas is Professor of Medicine, Psychology, Microbiology, and Immunology, and director of the Allergy and Immunology Clinic at Leonard M. Miller School of Medicine)

Sick and Tired

By Jeanne Antol Krull


In 1984 a woman suffering from severe fatigue, body aches, and difficulty concentrating walked into the office of clinical immunologist Nancy Klimas, MD, with a medical file several inches thick -- the result of visits to more than a dozen doctors. One piece of treatment advice she was given: "Change your hair color and get a manicure. You'll feel better." But the patient knew better, telling Klimas simply, "I think there''s something wrong with my immune system." Klimas sent the patient''s blood sample to colleague Mary Ann Fletcher, Ph.D., professor of medicine, microbiology/immunology, and psychology, and asked her to "look at this any way you know how." Fletcher's lab was already doing groundbreaking work on the role of the body's natural killer cells, which kill tumor cells or any pathogens in the blood. Mary Ann reports back, ''There is something very odd about her blood work. She has less natural killer cell function than we see in end-stage AIDS patients, and her immune activation markers are very high," Klimas recalls. "I called the patient and told her, ''I can't tell you what's wrong, but your labs are very abnormal.'' She burst into tears, she was so happy to hear something was wrong with her."

[CFS] is characterized by profound fatigue that is not improved by bed rest and may be worsened by physical or even mental activity. No matter what the name or how debilitating the symptoms, those who suffered from it -- mainly women -- were called everything from hypochondriacs to just plain crackpots.

Klimas said "After treating more than 2,000 chronic fatigue syndrome patients over more than 20 years, I''ve seen patients who were angry and frustrated at trying to convince their physicians and loved ones that this is a real illness. They experience a level of disability equal to that of patients with late-stage AIDS and patients undergoing chemotherapy"

"A recent prospective study found the one single predictor of who is going to stay sick after a viral infection is the severity of the initial viral infection," says Klimas.

When it comes to treating patients, Klimas says you don't have to be a chronic fatigue expert -- it comes down to basic clinical principles. Patients tend to have three main problems in addition to fatigue: sleep disruption, autonomic dysfunction (delayed drops in blood pressure after standing), and pain."In particular, the patient takes a big step forward the day you get their sleep better. Sleep is a huge part of helping patients feel better right from the beginning."

Even though discovery of a cause is still elusive after more than two decades of searching, scientists have zeroed in on several key areas: infectious agents such as viruses, problems with hormone regulation in the body's endocrine system, disturbances in the autonomic regulation of blood pressure and pulse, and immunologic dysfunction.

As director of AIDS research at the Miami Veterans Affairs Medical Center, Klimas was already working with an existing team of UM and VA researchers on HIV, and she tapped into their expertise for this new battle. "We were this big, diverse, multidisciplinary team in HIV, and I said, ''Why can't we do the same thing in chronic fatigue?'' "In looking at what generally happens to someone with this disease, it's easy to see how everything can go haywire. ... Whatever has stirred up your immune system in the first place can end up disturbing your sleep. When you don't sleep properly, never going into stage three and stage four sleep, your body doesn't release the nighttime hormones such as cortisol. A stress hormone, cortisol is a big part of why we quiet our immune system. It peaks in the morning when we wake up and resets the immune system for the day." When that doesn't happen, the immune system that was activated yesterday gets even more activated today and the next day, and it starts releasing far too many cytokines, which are molecules that can make you ache all over and disrupt stage four sleep. These molecules can also cause adverse effects in the brain, leading to cognitive and memory problems. "What you end up with is this vicious cycle of fairly subtle dysregulation between the body's hormone system, the autonomic nervous system, and the immune system," Klimassays.

"Initially it was quite difficult to get funding," remembers Fletcher. "This was seen as a hysterical condition that middle-aged women might come down with." Fletcher recently received a new National Institutes of Health (NIH) grant to study the role of specific peptides neuropeptide Y (NPY) and dipeptidyl-peptidase (CD26) in the development of chronic fatigue. These molecules are important in the regulation of many physiological and disease processes in the immune, nervous, and endocrine systems.

* * *
Unfortunately "change your hair color and get a manicure", "tell your husband you want to quit your job", "get married", "take a vacation" are all standard prescriptions for women with CFS/fibro.  I'd laugh if it weren't so revolting that in the post-feminist era we're still dealing with doctors who treat women that demeaning way.
You'll note that it was 1984 when Dr. Klimas and Fletcher  found the totally whacked-out immune system in a CFS patient, as bad as AIDS.  This was before CDC came up with the disparaging name.  It's now 23 years that it's been known that there's severe immune system involvement, and it still hasn't filtered down from the CFS experts to the rest of the medical community (or the general populace).  I still get comments that the only thing wrong with me is that I'm lazy.
My first CFS specialist told me the key was improving the quality of sleep, so the body could begin to heal itself.  As simple (and logical) as this solution is, there are still doctors who can't process the notion two decades later.  One told me that he wasn't going to give me a sleeping pill because I was "already sleeping too much" and he didn't want to add to that; the notion that quality of sleep was the issue simply didn't compute.  If you're spending 20 hours in bed to get the equivalent of 2 hours sleep, then improving the quality of the sleep (deep sleep instead of the half-asleep stage all night) should reduce the number of hours spent in bed.
The gastroenterologist told me he didn't know much about CFS/fibro, but suspected that good sleep would reduce my digestive symptoms.  Sure enough, when I bought the Sleep Number bed and started sleeping more, my gastrointestinal problems went from a daily thing down to a couple times a week.  Not cured, but a lot easier to deal with than spending your whole life in the bathroom.
This "simple explanation" by Dr. Klimas needs to be publicized anywhere and everywhere so that both doctors and laypeople understand that it's not hyperbole when patients say we're as sick as AIDS patients, and it's not being a difficult patient when we say anti-depressants and psychotherapy don't help.  What we need is an immunotherapy like the AIDS cocktail.

Tuesday, July 3, 2007

Mistakes doctors make with women

The current issue of Health magazine features an article "The 4 biggest mistakes doctors make (with women)" quoting liberally from Dr. Groopman, author of "How Doctors Think".

The mistakes are:

1. The doc stereotypes you

2. The doc assumes you’ve got that "bug" that’s going around

3. The doc wants to get you in and out fast

4. Your doc dislikes you – or likes you too much

"While the details may differ, the bottom line is all too common ... and up to half of those misdiagnoses have serious consequences."

Unfortunately, many male doctors stereotype women as high-strung, hypochondriac, depressed ... often without knowing the first thing about the woman or her personality.

A friend (a successful business owner) and I both found ourselves stereotyped by the same doctor as divorcees who wanted a doctor’s complicity in getting lifelong alimony. The doctor never asked either of us the questions that would have revealed that both of us were the primary breadwinner throughout the marriage, or that neither husband was in a financial position to pay enough alimony to pay all our bills, or that we had signed papers permanently waiving alimony and it was too late to change that decision.

We were middle-aged divorcees, so "obviously" our husbands had dumped us for 20-something trophy wives, and "obviously" we were depressed/lonely/unloved and "obviously" out to punish them for making us go back to work for minimum wage after promising we could be housewives. Unfortunately, the only part of that assumption that is true is "middle-aged divorcees". (I don’t know about hers, but my husband ended up with a dumpy woman about my age; hardly a trophy I couldn’t compete with!)

Those questions were never asked, because the doctor stereotyped all divorcees into a single mold. Perhaps his mother was a depressed divorcee who resented being pushed out into the work force again, perhaps his sister cried all the time and couldn’t get a date after her divorce, perhaps he himself was paying huge alimony after running off with a younger woman; whatever the basis, somewhere he got the idea that all divorcees are alike and ignored everything my friend and I said that contradicted his preconceived notion of a woman who’d always been financially dependent on a man and wanted to stay that way.

Fortunately, as the business owner, my friend was able to dictate her own work hours to keep them to a level that didn’t aggravate her injury. She is now healed and back to work because she had flexibility that most employees don’t have and didn’t need a doctor’s note to change her schedule.

One doctor, on hearing that I was married, blamed all my problems on "you resent your husband making you work". Another, on hearing that I was divorced, blamed all my problems on being depressed over the divorce. Clearly it didn’t register with him that my timeline indicated the initial virus occurred when I was single, I relapsed when I was married, and I had now relapsed again when I was divorced. My marital status had absolutely nothing to do with it. And, in fact, many female CFS/fibro patients tell similar stories – whether single, married, or divorced, doctors tell them that their condition is caused by unhappiness with that state, and theoretically would be cured by getting married if they aren’t or getting divorced if they are. Well, I got married, and I got divorced, and I still have CFS even after almost 10 years of being blissfully single.

The article suggests "Try a female doc. Studies show women do a better job of encouraging patients to talk" according to Prof. Debra Roter of Johns Hopkins. In fact, many CFS/fibro patients have found that female doctors are more open to accepting a physical basis for their ills, rather than stereotyping them as hypochondriacs or nut jobs. Female doctors know that not all women are stupid, depressed housewife wanna-be’s ... they just need to look in the mirror to see that stereotype is wrong. And, in fact, when I was able to get a female doctor, I was taken seriously. Unfortunately, there aren’t enough female doctors to go around, and some medical groups in this area restrict their assignment to those patients who for religious reasons are not allowed to see a male doctor. Since I have no such religious limitation, they would automatically assign me a male doctor, even though I asked for a female. (And, no, I wasn’t about to go out and buy a new wardrobe and change my name to fake being part of that religion.)

Tracy Gaudet, MD, author of "Consciously Female: How to listen to your body and soul for a lifetime of healthier living" finds that most women stick with an unhelpful doctor too long. She recommends if the doctor "belittles you, acts defensive, or flat-out ignores your requests for better dialogue" you should immediately look for a new doctor, and tell him precisely why you are changing. I’d say that any doctor who blames your CFS/fibro on your marital status is certainly belittling your concerns and deserves to be dumped.

When I changed doctors, I consulted a friend who is a nurse practitioner, how should I present my reasons so that they wouldn’t think I was doctor-shopping to get drugs? Knowing the entire story, she edited it down to "my last doctor’s office doesn’t return phone calls" as a perfectly legitimate reason that any doctor would respect.

The article suggests checking, and investigating your final choices at (there is a fee). "But remember that a spotless record won’t guarantee good communication skills."

Nor will it guarantee that there haven’t been complaints. I filed my first complaint about one of my doctors as soon as I realized that his staff had no intention of ever letting me make another appointment with him (it’s unethical to abandon a patient), and made more written complaints with the Medical Board as more information came to light. Yet, even though I know for a fact that multiple complaints were made because I’m the one who made them, the Medical Board shows that he has no complaints; they kicked back every one of my written complaints with a form letter that I hadn’t lost life or limb, therefore, they weren’t going to do a thorough investigation. A million other women could’ve had the same experience my friend and I had with him, and the California Medical Board would continue to say he had no complaints ... until he finally kills someone. I can’t point to a mangled or erroneously amputated limb, only to a lifestyle lost. Losing my health and my career simply wasn’t egregious enough to merit a black mark in his record.

So, I’d recommend checking one more place: your County courthouse, where there is no editing of what complaint is considered worthy of being listed in the records. In some places, you can get all the information you need online. If your county isn’t one of them, go to the Civil clerk, and ask for the case index. Look up the doctor’s name (and even the name of the medical group) in the Defendant/Respondent section, and if he’s been sued, start taking notes. The case index may indicate the names of the lawyers, which is certainly an easy way to get information – call the plaintiff’s lawyer, and ask what he can tell you about the case. Some are innocuous (one of Mom’s specialists was sued without having any part in the patient’s care; the lawyer named absolutely everyone whose name was on any piece of paper the patient had and sorted them out later) or maybe a landlord suing the responsible parent for a college student’s unpaid rent, and some will be surefire warnings to stay away.

If the plaintiff’s lawyer can’t or won’t tell you anything, ask to court clerk how you can get the case files and read the contents. I spent the money to file a lawsuit without a lawyer just so that there is a public record of what happened to me; the case was dismissed because of statute of limitation problems, but the facts are now out there to warn other innocent people away before they become victims of lying and incompetence.

And, of course, talk to other CFS/fibro patients in your area about what doctors they’ve found helpful and which they had problems with. Unfortunately, when I called the president of the support group I knew about, she had only one recommendation – the doctor who was never taking new patients. When I said I’d been trying for years to get an appointment with him, and who would she recommend in the meantime, she simply repeated his name, which did me no good, because he still wasn’t taking new patients, and wasn’t right up till the day he retired.

Eventually, a friend googled up a second support group in the area, and the president of that one simply groaned when I told him which medical group I’d gone to after my long-time PCP died suddenly – he was (to put it mildly) irked that the other person hadn’t at least told me to stay far away from them, because they were well-known in the CFS community as being the last place you’d want to go; he’d heard my tale of woe a dozen times before from other patients, who didn’t have the legal background to make a public record the way I did.

If you can’t find a support group in your area, has a Good Doctor list – these doctors are not all CFS/fibro specialists, some (including mine) are simply "CFS friendly", i.e., not inclined to slap a psych label on you. Check the various online forums, too, for e-groups – will get you to mine – where you may find someone in your area who has some advice on doctors worth seeing (or worth avoiding). My current doctor is not a specialist, but he’s open-minded enough to read what I print out for him, and discuss the pros and cons of any medication or test recommended in that printout.

Doctors' (mis)Treatment of Women

Diagnosis or distraction?
New ovarian cancer advisory could save lives, but it could also cause needless panic

By Cheryl Clark

“There have been so many women who complained about these symptoms but were blown off by their doctors,” said Goff, a gynecologic oncologist at the University of Washington. “We now know that paying attention could mean the difference between a 70 to 90 percent chance of a cure at stage 1, versus 20 to 30 percent at stage 4.”

“The biggest obstacle is that individual physicians not experienced in cancer are very likely to dismiss these complaints,” said Dr. Albert Deisseroth, an avid supporter of the advisory. He's president and chief executive of the Sidney Kimmel Cancer Center in Kearny Mesa. Deisseroth said that too often, patients complain about abdominal bloating and have their doctors respond, “Oh don't worry, we'll give you antibiotics.”

Citing her own research, Goff said ovarian cancer patients who complained of the pelvic symptoms often were told that nothing was wrong or that they had everything from depression to irritable bowel syndrome. Only 20 percent of those patients were initially informed that they might have ovarian cancer. Geri Danzig of Hillcrest is a classic case. When she complained about her pelvic symptoms to two doctors, she first was given an anti-depressant. 

* * *

This is the same "treatment" that CFS patients get -- they describe their symptoms to doctors and are given a pat on the head and an anti-depressant, or told nothing is wrong and given a diagnosis of hypochondria.

There is no question that ovarian cancer is a serious disease, but because these are female patients, and the symptoms are considered "vague", they're dismissed by "physicians not experienced" in treating the disease as being psychological in origin.  And then these patients die because they don't get sent to a specialist who does know how to make the diagnosis, until they've gone from the 90% chance in stage 1 to the 20% chance in stage 4.  Similarly, CFS patients who could have been returned to work become permanently disabled because of the lack of early intervention.

Time and again, we hear doctors say that CFS is impossible to diagnose.  But patient support groups have a near-100% success rate in making the diagnosis.  Why?  Because the patients are experienced with it.  We know how to differentiate CFS from depression.  In one, you have no initiative to start a project; in the other, you have initiative to start, but lack the stamina to finish.  The reaction to exercise is another easy diagnostic tool -- there are only a few diseases where exercise makes the patient worse.  Asking those two questions is absolutely free, no expensive testing required.  But those questions aren't asked because the doctors don't know to ask them.

The real crime is the willingness of male doctors to brand women as psych cases so quickly.  According to a statistic cited by Dr. David Bell, fully half of patients initially dismissed as hypochondriacs or given a psych diagnosis are eventually diagnosed with a real medical condition.  The patient knows her own body and when things aren't right with it.  It would behoove doctors to listen to the patients, not tell them they're imagining things, and not issue a psych diagnosis or prescribe anti-depressants until the patient has been evaluated by a psych professional who knows that there have to be emotional symptoms, not just pain and fatigue, in order to have a valid diagnosis of depression. 

Every time I've been evaluated by trained counselors, they have concluded that the symptoms I have sound like the flu, because the emotional component is missing.  When I take that evaluation back to the MD who thinks I'm just depressed, he refuses to accept the possibility that his amateur psych diagnosis is wrong and there's something physically wrong with me.


Monday, July 2, 2007

A Disability Wiki

From Margaret:

"Disapedia - A very broad disability community
A Wiki Disabled Community"

The disabled author wants some feedback from the disabled community. Notice
the heretofore poor and discriminatory entry on Fibromyalgia, and none on
ME, CFIDS, MCS, (notice the environmental category)or GWI. Here's a chance
for our good medical historians to politely send in an accurate entry to
educate the rest of the disabled community on our illnesses.

I'm an undergrad at UC Berkeley. One of the problems that occurred to me is
that there are very few good broad website when it comes to disability. In
response I started Disapedia. The hope is to create a website that will
eventually cover any topic of interest. I would love if you guys check it
out and send in your feed back. Please let me know what you think. Thanks.

A Wiki Disabled Community
AIM: Stringerace:
* * *
Disclosure: Peter has kindly agreed to link to my blog. 
I would urge those of you who have new, valid information about CFS or fibromyalgia to edit that information into the Wiki.  Let's get the truth out there, that "fatigue" has very little to do with CFS, and that neither condition is psychosomatic.

Sunday, July 1, 2007

Some Good News

Activist Cort Johnson of "Phoenix Rising" reports:

"The husband of one of our group members had recently encountered a short class in medical school in which CFS was treated as a nothing more than a puzzling but entirely legitimate disease. The fact that CFS both a) made it into a class in medical school and b) was treated fairly is somewhat astonishing. The Vermont CFIDS organization was recently able to get a bill passed to educate physicians about CFS"

That they are now teaching budding doctors that CFS is real is good, but does nothing about the older doctors who are convinced that CFS is psychological because that's what they were taught in school and have never bothered to read any of the new research to find that's been disproved. 
The efforts of the Vermont organization have to be repeated in all 50 states, so that the doctors who are already out there practicing get brought up to speed on the neurological and physiological abnormalities that aren't readily apparent with just the basic blood tests. 
I had the basic blood tests, which were all normal (as they should be with CFS), because I don't have diabetes, anemia, AIDS, etc. along with the CFS.  Unfortunately, that doctor concluded that if these tests were normal, there was no need to order any of the other tests I requested, on the mistaken assumption that the tests he did should identify any medical problem under the sun, and that if they were all normal, then the problem had to be psychological.  Nothing could be further from the truth; blood tests don't show brain damage, they don't show paralytic muscle weakness, they don't show severe sleep disturbance, they don't show the cardiac dysfunction demonstrated by Dr. Lerner in the 90s and Dr. Natelson in the 2000s.

Another CFS blog

From Jeremy Bearman

 I would like to announce that my blog contains update on Ampligen, and an 
update on John Gow's genetic research:

The Power of Positive Thinking...

or "just exactly how much can CBT do for CFS patients?"

Some of the proponents of Cognitive Behavioral Therapy (CBT) for CFS/fibro would have you believe that you can cure all your symptoms just by thinking happy thoughts. 

I've even heard it suggested that pain would go away entirely if the patient didn't engage in "pain behaviors" ... things like wincing, moaning, limping.  Let me tell you as someone who had to cover up a limp onstage: when my knee is acting up, it hurts *more* to not limp.  Trust me, I'm not limping because I want sympathy; I'm limping because my knee has locked and it takes too much pain and effort to try to straighten it with every step.  Anyone who thinks that chronic pain patients are simply *pretending* to have pain because they want those around them to feel sorry for them has a screw loose!  In fact, those "pain behaviors" that we're supposed to stop doing are actually a coping mechanism.  I actually walk faster limping than I can while making the conscious effort to force the leg to straighten each time I put it down, and visibly slowing down to do that is far more likely to get someone to offer sympathy than a limp that they often don't even notice because I'm moving at a normal speed. 

Let me tell you, the Power of Positive Thinking can take you only so far.  As a kid, I wanted to become a stewardess on an international airline, and even more so when my best friend did just that.  I fit the height and weight requirements.  I studied lots of languages to make myself more readily employable.  But when it came down to it, the airlines had an uncorrected vision requirement that I could not meet, and no amount of positive thinking was going to get my 20/400 down to an acceptable 20/40.  This wasn't something I could fake with an unobtrusive squint at the eye chart; I could barely see the chart without my glasses much less make out the letters near the bottom.  There was no Lasik surgery available in those days; nothing I could do to fix the problem, other than fall back, regroup, and aim toward a career in international law where my language ability would come in handy.

That's only one example of where I've diligently followed the rules of "imagine it, and it can be so", and did more than merely imagine – I diligently worked toward achieving my goal – but in the end, positive thinking was not enough to overcome something beyond my control.  I could be the best shortstop in the world (and I actually was pretty good back in the day, being the shortstop of choice on several co-ed teams, over some of the males who wanted the job), but I'll never play at the major league level.  Not because I have CFS, but because it's actually written into the charter of MLB that women are not allowed.  Again, my solution was to fall back, regroup, and find something else to do with my athletic talent when the Power of Positive Thinking was not enough due to something that I couldn't change.

Unfortunately, a lot of the positive thinking gurus don't tell you that there will be times you can't succeed, because the people they're really aiming their lectures at are those who are looking for any excuse possible for failing to succeed, which is the reason they haven't succeeded in the past. 

Then there are those of us who were very successful before we were felled by CFS, who have to come to grips with the fact that sometimes failure is not because we didn't give it our all, but because some things are simply beyond your control.  I cannot take a pill that has not been invented to cure my CFS, and since I'm not trained in that field, I can't discover one myself, either -- I have to wait until someone else with the right skills does what I need to have done before I can succeed.

There's a place for CBT in the treatment of CFS/fibro, for those who've become depressed because of their limitations and need to learn to live a new lifestyle.  And learning mind-body tricks like biofeedback or distracting yourself from your pain has a use during the day. 

My problem was that what I have to do mentally to override the pain is incompatible with turning off my brain so I can fall asleep; the instant my brain stopped thinking about other things and started to drift off toward slumber, the pain would come back full force and jolt me awake, forcing me to turn on my brain again to distract myself from the pain.  One of many medical self-help things where I can do one or the other, but not both (for another example, I'm supposed to eat lots of spicy food every day to clear my sinuses, but I'm also supposed to completely avoid spicy food because of my touchy digestion). 

But try getting it across to a doctor that you don't appear to be in severe pain during the day when you're doing things to distract yourself, but at bedtime the pain keeps you from falling asleep because you're not able to distract yourself without staying awake all night.  It took finding someone who sees first-hand a similar medical condition in his own family to understand that what he sees in his office at 1 PM when I'm chatting and listening to music is not necessarily what he'd see at 1 AM in my bedroom when it's dark and silent and my brain has nothing else to concentrate on but the throbbing in my damaged joints.

It troubles me that some advocates are so worried about CFS/fibro being classified as psychosomatic that they insist that CBT has no place at all in the treatment of CFS/fibro.  There are times it can be beneficial for limited purposes.  It will not cure the underlying virus, or return you to perfect health and full-time employment, but it might make life a little more bearable for someone who is struggling to adjust to their "New Normal".