Tuesday, November 21, 2006

What CDC Says about CFS

After 20 years of denial, CDC has admitted that CFS is "real".  These are excerpts from the recent press conference in which they announced the official government stance that this is a very real, biological, disabling disease.  You can read the whole thing at http://www.cdc.gov/od/oc/media/transcripts/t061103.htm?id=36410

Dr. Julie Gerberding, head of CDC "We are committed to improving the awareness that this is a real illness and that people need real medical care and they deserve the best possible help that we can provide."

Dr. Willian Reeves of CDC: "We've documented, as have others, that the level of functional impairment in people who suffer from CFS is comparable to multiple sclerosis, AIDS, end-stage renal failure, chronic obstructive pulmonary disease. The disability is equivalent to that of some well-known, very severe medical conditions."

Reeves again: "the best predictor for CFS was intensity of the initial infectious disease. The sicker the patient when he or she first got infected, the more likely they were to have persisting chronic symptoms. There were no other factors that we found in this study, psychological or biological, that held up under thorough analysis."

Harvard's Dr. Anthony Komaroff: "there are now over 4,000 published studies that show underlying biological abnormalities in patients with this illness. It's not an illness that people can simply imagine that they have and it's not a psychological illness."

Komaroff continues: "First, abnormalities of the brain. It's hard to study the brain in the living human being. Invasive techniques like a brain biopsy are reserved only for people with life- threatening illnesses. But over the last 20 years, the number of non-invasive techniques to look at the brain has grown enormously and here's what we're learning.

"First, brain hormones. The brain has hormones produced in two major centers: the hypothalamus, pituitary gland. And a whole bunch of studies show that that hormone system is different in patients with chronic fatigue syndrome than in healthy people, people with depression and other illnesses.

"Brain imaging studies, particularly MRI, or magnetic resonance imaging, scans and nuclear scans of various types, have shown inflammation, reduced blood flow and impaired cellular function in different locations of the brain. In many patients, cognitive function is impaired. And finally, the autonomic nervous system, which controls blood pressure and pulse and other things, most studies find to be abnormal in this illness.

"Now, none of these nervous system abnormalities is constant or permanent. But when they're there, they change a person's life. And it's entirely plausible that the abnormalities that have been seen on these various neurologic testing techniques could explain the symptoms of this illness.

"What about the immune system in chronic fatigue syndrome?

"Many studies have found that by several criteria the immune system appears to be in a state of chronic activation, as if it were trying to fight against something foreign.

"The research described by Dr. Reeves on looking at gene expression studies, for example -- and this is now true in several different laboratories around the world, looking at different patients -- the genes that control the activation of the immune system are abnormally expressed in patients with this illness.

"Dr. Klimas and other investigators have shown that different cells within the immune system are abnormal either in number or their capacity to function."

Dr. Nancy Klimas, noted researcher: "Historically, it's been the lack of credibility in this illness that has been one of our major stumbling blocks to making progress.  Well, today there is evidence of the biological underpinnings, as Dr. Komaroff described. And there's evidence that the patients with this illness experience a level of disability that's equal to that of patients with late-stage AIDS, patients undergoing chemotherapy, patients with multiple sclerosis. And that has certainly given it a level of credibility that should be easily understood by people's friends and families, and certainly, by us, the health care providers."

 

QUESTION: You've cited quite a bit of research that validates that CFS is actually a real disease.

I'm wondering: Why is there still such a level of skepticism out there in the medical community? Is it simply a lack of awareness among health professionals? Or are there still some areas or some gaps in the research that raises questions that need to be addressed that contributes to that skepticism?

MCCLEARY: Dr. Komaroff?

DR. KOMAROFF: I think there are an awful lot of skeptics I've met who really just haven't read the research literature, don't even know that there are 4,000 peer-reviewed published papers out there.

And I think that's probably the biggest factor, combined with the fact that those people, sort of, took a stand early on as to what they believe and have been reluctant to back off in the face of the evidence they've not made themselves aware of.

 

Clearly, it is now official that anyone who doesn't believe CFS is a very real, disabling disease needs to read the literature that proves -- to the satisfaction of the US government -- that the patients are not faking, the doctors who believe in it are not quacks. 

The real quacks are the doctors who, for the past 20 years, have ignored every one of those 4000+ research studies proving objective, documentable abnormalities in patients who have CFS -- true CFS, not the symptom of "chronic fatigue", which is another thing entirely.

Dr. Bell's list of symptoms, known in 1993 already:

exhaustion, headache, malaise, memory loss, muscle pain, difficulty concentrating, joint pain, abdominal pain, lymph node pain, sore throat, lack of restful sleep, muscle weakness, bitter or metallic taste, balance disturbance, diarrhea, constipation, bloating, panic attacks, eye pain, scratchiness in eyes, blurring of vision, double vision, sensitivity to bright lights, numbness and/or tingling in extremities, fainting spells, light-headedness, dizziness, clumsiness, insomnia, fever or sensation of fever, chills, night sweats, weight gain, allergies, chemical sensitivities, palpitations, shortness of breath, flushing rash of the face and cheeks, swelling of the extremities...

Although these symptoms will not show up on a blood test, many of them are "objective" in the sense that an observer can see for themselves that the patient fainted, the patient is awake all night, the patient is gaining weight without changing their food intake, the patient's lymph nodes are palpably swollen...

In other books, there are long lists of blood tests which also objectively prove that there is something very wrong.  As Dr. Bell notes "the CBC is not an overall portrait of health."  Yet many doctors wrongly assume that if your CBC is normal, there's nothing wrong, and don't bother to do the follow-up tests for things that CBC doesn't check. 

All this has been known for years, but some hide-bound doctors refused to consider anything that conflicted with their personal theories that were often based in misogynism more than science.  Now that even CDC has admitted that CFS is real, those doctors will have to do some serious soul-searching about why they have been so committed to the idea that CFS is not real.

Oddly enough, some doctors who dispute the existence of CFS have no trouble in accepting a very similar collection of neurological symptoms adding up to Multiple Sclerosis, for which there also is no specific blood test.

What the EXPERTS say about CFS

QUOTES FROM EXPERTS

CFS represents the final common pathway for multifactorial disorder with a limbic system encephalopathy causing autonomic dysfunction and subtle neuroendocrine derangements. – Jay Goldstein, M.D.

CFS is a debilitating illness involving symptoms and abnormalities of the immune system, circulatory system, central nervous system, and hypothalamic-pituitary-adrenal axis. – Dr. Katrina Berne

The name "Chronic Fatigue Syndrome" was selected by a small group of politically motivated scientists. Their deliberate intention was to obfuscate the nature of the disease by placing it in the realm of the psychiatric rather than the organic. The harm they have caused is surely one of the great tragedies of medicine. – Hillary J. Johnson

The name of an illness has a profound impact upon those who suffer from it, upon how the uninformed perceive it, and upon medical research and treatment.– John Herd

Historically, illnesses are attributed to temperament when science lacks, or refuses to seek, answers.– B.F. Synhorst, M.S.W.

Attribution of illness to ... unconscious motivation is inaccurate, unfair and insulting. – Dr. Katrina Berne

This is not a "benign" disease. The loss to the minds and bodies is inestimable. – Michael Goldberg, M.D.

Avoid the labels "somatizer", "hypochondriac", "neurotic" and "crock". All symptoms have origins and should be taken seriously.– Dr. Katrina Berne

"Just learn to live with it" is not an acceptable approach to pain management.– Steve Fanto, M.D.

Just because standard testing shows normal values does not always mean everything is fine. It may simply mean that the proper tests have not been run. – Devin Starlanyl, M.D.

When these conditions are vigorously and appropriately treated at their onset, much pain and dysfunction can be prevented. – Devin Starlanyl, M.D.

Just because the doctor may not be familiar with your medical condition does not mean it isn’t real.– Devin Starlanyl, M.D.

It is a sorry state when patients must be responsible for the education of their doctors, but that is where we are.– Devin Starlanyl, M.D.

CFS is characterized by extreme exhaustion lasting 6 months as well as biochemical abnormalities

It is not the patients who are disturbed, it is the physicians who are psychologically disturbed because they ignore the data, and whatever data there is, they manipulate it to say what they want it to say. -- Muhammed B. Yunus, M.D.

Dr. Paul Cheney found that in dual chromatography analyses, many CFIDS patients actually had more derangement of the brain, on a biochemical level, than Parkinson’s or Alzheimer’s patients.

Dr. Sheila Bastien, who studied a group of educated patients, was stunned to realize that patients who initially appeared very lucid had suffered tremendous drops in IQ.

Nobody has partaken in such a zealous barrage of metaphoric lampoons since the nineteenth century days of multiple sclerosis, which was called in its early years "hysterical paralysis".

The incidence of CFIDS is now higher than that of lung cancer, breast cancer or HIV infection in women.

It’s stupid to call it Chronic Fatigue Syndrome. It should be called the forever dead syndrome.–Keith Jarrett, jazz pianist and CFS patient

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

When asked on CNN how many of his CFIDS patients had fully recovered in fifteen years, Dr. Peterson unequivocally and chillingly stated "None".

According to Dr. Komaroff, 4000+ research studies have identified objective physical/organic abnormalities in CFS patients

40% of CFS patients studied by a Chicago group were completely disabled by the disease. Nearly all of these said they had been denied Social Security benefits.

Many doctors have tried to find a causal link between CFS and personality traits that, in the case of any other illness, would be considered exemplary: blaming patients for having had a strong work ethic (calling them "overachievers") or exercising regularly (being "too driven").

Many medical disorders present as psychological disturbances. Pancreatic cancer can cause visual hallucinations. Adrenal tumors will cause behavior that can seem psychotic. So you have to be very careful not to accept psychiatric diagnoses at face value. – Sheila Bastien, Ph.D.

I remember thinking that if I were testing nothing but Alzheimer's patients, then I would say "This group isn't very impaired." But they were more impaired than the head concussion cases that I've tested that have been in litigation. ... And it looked worse than most of your average depressions. – Sheila Bastien, Ph.D.

There are many well accepted disorders that lack objective physical findings.  – Kevin P. White, M.D.

We have little understanding of disease mechanisms for many well accepted disorders, such as polymyalgia rheumatica, migraine headache, and trigeminal neuralgia. And we have very few effective treatments for disorders such as scleroderma and ankylosing spondylitis. Yet none of these disorders comes under the same intensely zealous scrutiny  ...   all symptoms are, by definition, subjective. – Kevin P. White, M.D.

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

The apparently disinterested CDC essentially turned its back on the devastation in Incline Village and elsewhere. On a name change petition, Hillary J. Johnson, author of Osler's Web, commented that the name "Chronic Fatigue Syndrome" was selected "by a small group of politically motivated and/or poorly informed scientists and doctors who were vastly more concerned about costs to insurance companies and the Social Security Administration than about public health. Their deliberate intention –– based on the correspondence they exchanged over a period of months –– was to obfuscate the nature of the disease by placing it in the realm of the psychiatric rather than the organic. The harm they have caused is surely one of the great tragedies of medicine. Chronic Fatigue Syndrome, Fibromyalgia, and Other Invisible Illnesses, Katrina Berne, Ph.D., page 10

 Same book, page 13, David Bell, M.D., considers the word "fatigue" inappropriate since it is defined as a response to exertion that is relieved by rest, whereas CFS "fatigue" may result from little or no exertion and is not substantially relieved by rest. ...The CDC agreed to study the matter [of a name change] but later announced that the adoption of a new name is premature. In a catch-22, the present name trivializes the illness, thereby discouraging the research funding needed to uncover the pathophysiology of the disorder, which would help determine a more accurate name.

Nancy Klimas, M.D., at 11/3/06 CDC Press Conference: "there's evidence that the patients with this illness experience a level of disability that's equal to that of patients with late-stage AIDS, patients undergoing chemotherapy, patients with multiple sclerosis. And that has certainly given it a level of credibility that should be easily understood by people's friends and families, and certainly, by us, the health care providers."

 

Monday, November 20, 2006

CFS is Not Fibro

Since I've had some comments lately from people with fibromyalgia (but not CFS) that they can do things that I cannot, and therefore they assume that I'm not doing these things because I don't want to, let me provide some quotes from an article compiled by Jodi Bassett showing that these supposedly similar diseases manifest in very different ways:  http://www.ahummingbirdsguide.com/topicmedefinitions2.htm

Myalgic Encephalomyelitis (a/k/a CFS) vs Fibromyalgia by Jodi Bassett

Do M.E. and Fibromyalgia really have as much in common as some people claim? The reality is that the similarities between the two illnesses are minimal and superficial at best but their differences are truly profound. Even if they do share one or two symptoms is this really significant when in so many much more important ways they are so VERY different and have so very little in common?

Dr Darrel Ho_Yen of Scotland, (a well respected M.E. researcher and virologist) was published in the British Medical Journal in 1994:  "... the management of the two conditions is different. Patients with (ME/CFS) should be advised not to increase their activities gradually until they feel 80% of normal, whereas patients with fibromyalgia may benefit from a regime of increasing activity. (BMJ 1994:309:1515)."

Consultant rheumatologists who have sufficient experience with both syndromes have observed clinically that in FM, the muscle pain is helped by gentle stretching and exercise, whereas in ME/CFS, exercise makes muscle pain worse.

Jodi also details some radical differences in test results that prove that CFS is not the same as fibro.  

There is a vast difference between not doing something because it "might" cause you pain, and not doing it because your muscles refuse to respond when you command them to do it.  "Paralytic muscle weakness" is one of the neurological symptoms in CFS that is not usually found in fibromyalgia (which is primarily characterized by abnormal pain levels, though the muscles still work properly). 

It's not a matter of "wanting to", but of physical ability.  For example, there have been plenty of times when I sense I'm about to be sick.  I certainly don't "want to" get it all over myself and the couch, and create a huge clean-up job.  But after trying a dozen times to stand up so that I can get to the bathroom, and with no one else in the house to help me get up by pulling me upright, I'm simply stuck where I am because my muscles are paralyzed ... they will not respond no matter how desperately I command them "get up, I must get to the bathroom NOW".  Fortunately, I keep a trash can next to every place I sit, so if I can turn my head, there's not much mess to clean up.

A member of one of my online support groups has explained Paralytic Muscle Weakness in very telling terms -- if her house were to catch on fire, she would have to wait among the raging flames until a firefighter came to carry her out, because her muscles would not respond even to this emergency situation.  Surely no one would think she's staying in bed because she WANTS to be burned to a crisp?

I also have orthopedic problems resulting from years of intense physical activity.  I have been told not to lift over my head; that means I can't put the groceries up on the kitchen shelf.  When the inspector ordered me to put things in the cupboards that I had been storing on the counter where I could easily reach them, I had to go to the doctor several times a week to get my dislocated shoulder put back in, and each time, the doctor scolded me "you know better than to do that"; I do, but the inspector didn't care about doctor's orders. 

I also faint (another neurological problem not commonly seen in fibromyalgia).  For safety reasons, the doctors don't want me standing on chairs or ladders to put things up into the cupboards unless there is someone else standing right there who is physically strong enough to catch me if I fall.  There are serious medical reasons (and doctor's orders) not to do this task myself, but when I've asked other people to do the job, they just dump the bags on the floor and tell me "do it yourself -- I don't know where it goes".  Um, try putting the vegetables next to the other canned vegetables and the soup next to the other canned soup -- this is not rocket science.  What it is, pure and simple, is people who are hired to do whatI NEED done, who refuse to do what they're being paid for, because it's not what they want to do.

I'm under doctor's orders not to carry things for orthopedic reasons.  I also have neurological balance problems (not commonly seen in fibromyalgia) that make it hard enough for me to get myself safely down the stairs without carrying a box that might unbalance me even further.  Again, I hire people and tell them to carry boxes to the basement for me, and they give me excuses instead of cooperation. 

"I can't -- my suitcase is on top of the boxes", that's not someone who really wants to get the place cleaned up ... that's someone who, having gotten the free room-and-board she wanted, now sees no reason to follow through on the promises that got them, just like the hired cleaners who demand payment upfront to make sure I don't defraud THEM, and then refuse to do what they're asked, thus defrauding ME; I can't refuse to pay them -- they already have my money. 

The hallmark of CFS is "exercise intolerance".  The more you do, the sicker you get.  This is not, by any means, the same as fibromyalgia, where more exercise makes you feel better.  It has been proven that CFS patients have a "daily activity limit" and that exceeding that limit puts them into relapse.  Yet, people who have fibromyalgia without CFS, and don't know that the experts recommend a CFS patient stop before they reach "their all", think that we have the same condition they do, and tell us to exercise like they're supposed to. 

I've tried exercising more ... it makes me sicker.  That's how we know it's CFS and not depression, and that's how we know it's CFS and not pure fibro: CFS has this unique reaction to exercise that manifests differently from the reaction to exercise in every other so-called similar disease.  Research has proven that this is not a figment of the patients' imagination -- there's a biological reason why overused muscles rebel.

After one week of taking a walk every day (which was supposed to work wonders for my arthritis), I was back in bed with Paralytic Muscle Weakness.  As my support group member said, if the house caught on fire, I'd have to wait for a fireman to carry me, because I couldn't get out of bed on my own.  Eventually, I remembered reading that a paraplegic had a rope tied to the foot of the bed to pull himself up from lying down, and byusing the bedspread as a rope, I was able to "sit" propped up on pillows despite the muscles in my lower body not cooperating. That hasn't happened since, because I learned my lesson and don't push my muscles beyond their limit. 

In fact, I feel pretty good now that I have established where my limits are and don't exceed them.  That's the key to coping with CFS -- do as much as you safely can, but stop before your body rebels.  An extra 5 minutes of exertion could cost you a week in bed; it's just not worth it.  As much as I hate spending 23 hours a day semi-horizontal, it's better to have that one hour to do some light housework and cooking than to push myself and have to spend 24 hours a day in bed.

On November 3, 2006, CDC held a press conference announcing that "CDC is real", and that "We've documented, as have others, that the level of functional impairment in people who suffer from CFS is comparable to multiple sclerosis, AIDS, end-stage renal failure, chronic obstructive pulmonary disease. The disability is equivalent to that of some well-known, very severe medical conditions."  

Those words make it clear that the official government position is not that CFS is laziness or unwillingness to work -- the official government position is that CFS is a severe, debilitating medical condition, and neither the disease nor the patients should be insulted any longer. 

It's well-known that classic CFS begins with a flu-like illness, a virus that never goes away -- fibromyalgia is not normally related to a virus.  Right there, we can see that they are very different diseases.  CDC's press conference continued, "The sicker the patient when he or she first got infected, the more likely they were to have persisting chronic symptoms. There were no other factors that we found in this study, psychological or biological, that held up under thorough analysis."  That's not fakery, that's virology.

Dr. Anthony Komaroff, Harvard researcher, said that day "there are now over 4,000 published studies that show underlying biological abnormalities in patients with this illness. It's not an illness that people can simply imagine that they have and it's not a psychological illness."  I can tell you from 12 years post-diagnosis of trying to imagine myself well, that I never succeeded in getting rid of all thesymptoms.  I worked full-time, but had little energy left for Quality of Life -- most of the things I used to enjoy doing had to be set aside as unnecessary drains on the limited amount of energy that was required just to keep working full-time.  Dr. Komaroff confirms this "in the last five years a number of studies have shown that there probably are abnormalities of energy metabolism in patients with this illness" which cause the lack of energy.

Dr. Nancy Klimas, who has treated thousands of patients in addition to doing research, chimed in at the CDC press conference with "there's evidence that the patients with this illness experience a level of disability that's equal to that of patients with late-stage AIDS, patients undergoing chemotherapy, patients with multiple sclerosis. And that has certainly given it a level of credibility that should be easily understood by people's friends and families, and certainly, by us, the health care providers."

Dr. John Greensmith has noted that if a child is faking an illness, they will feel better on school holidays and weekends.  For 12 years, I spent most of my weekends and holidays from work on the couch, resting up so that I could get through another week of work.  I didn't go sightseeing, I didn't hit the holiday sales at the mall, I didn't go to the movies like my co-workers ... I rested so that I could keep working.  I stopped playing volleyball and going hiking, and spent my weekends on the couch with needlework -- a night of dancing would have cost me several days off work later in the week.  As much as I love to dance, as the sole support of the family, I could not risk my job to do it.

This is not a disease of someone who lays on the couch 24/7 because they hate to exercise.  Many of the Incline Village patients were avid skiers, and most of the Truckee High girls basketball team were felled by the virus.  We were dancers, we were marathoners, we were Olympians.  The truth doesn't fit the assumption that people with CFS love being couch potatoes. 

Too many of the patients were competitive athletes, too many of the treating doctors saw patients who felt a little better and tried to go back to their training regimen; the doctors actually treating the patients knew that the problem was not exercise-o-phobia, as postulated by some people who never actually treated a CFS patient. 

I went from being able to hike 20 miles a day over hills to needing a half hour nap to recuperate from the 10-foot walk to the bathroom, so that I could make it the 10 feet back to the bed.  A doctor who asked the right questions would instantly realize that this was not a patient who is looking for an excuse to lie on the couch and watch TV; unfortunately, too many doctors don't ask the right questions because they "know" women don't want to get sweaty and ruin their make-up and curls.

It's been my experience that the people who assume you're too lazy to exercise are those who themselves hate to exercise.  A doctor who himself loves to run will understand immediately that you don't give up the Runner's High for anything in the world.

And the people who assume you're simply too lazy to work are generally those who themselves are looking for any excuse to be stay-at-home wives.  Never in a million years could I explain to them that the adrenaline rush of being a litigation paralegal is an addiction you don't give up easily.  And they don't seem to grasp that without a husband's income to fall back on, my working is the difference between a very enjoyable upper middle class income ($50,000+ for one person) and below poverty level, where every penny has to be accounted for.

If you're the sort who's always looking for ways to get out of having to work, you'll never understand that having a job can be an immense pleasure, and having that job taken away from you is immense torture.  Like most CFS patients, I would give ANYTHING to return to my career, but with no treatment or cure for CFS, all I can do is sit and wait.  And, as I did 6 years ago: create a job that fits my physical limitations so I can still get some of the pleasure of working, even if it's not full-time.