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."

 

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.

Calm before the storm

Starting next week, I'll have a ton of work coming in every week for the rest of the year.  But this week there was very little work, so I took the opportunity to get some long-postponed chores out of the way.

We took two big boxes of professional clothing to the thrift store -- dresses and suits that could have been Seanette's if she had ever gotten the basic housecleaning caught up enough that I could ask her to spend a couple hours doing something non-essential like helping me clean out the closet.  She chose not to do the basics, so she lost out on the opportunity to have a full office-job wardrobe for free.  And has only herself to blame.

Stubbornness and slothfulness can be costly in the long run.  You never know what bonuses your employer has in mind for a job well-done.

Now I'm going to spend the weekend enjoying a last burst of stitching, because once the work starts coming in, there won't be much time for that.  Fortunately, I'm almost done with my Christmas presents.

Guilty Until Proven Innocent (Part 2)

Also see my post of 7/11/06

http://www.immunesupport.com/library/showarticle.cfm?id=7469 is Mary's version of the same rant. 

According to Mary's research:

There's a widespread national myth that people are "faking it"

I understand that Connecticut spent over a million dollars to uproot all
those fakers in their system, and only found six. Real cost efficient. You
would think those economists who like to argue that it isn't worth the cost
to eradicate that least little bit of pollution would also maybe
occasionally argue that it isn't worth the cost (both human and
bureaucratic) to be so fixated on that last cheater somewhere that:

a. The system spends more than it saves by finding them; and

b. Real people with real disabilities, and their real families, suffer.

It's even worse around here -- the government is doing a thorough investigation of a number of high-level police personnel who "mysteriously" became disabled just before retirement.  Apparently, they get more money for disability retirement than they do for regular retirement.  But that's not the case for the rest of us.  Because I was deemed unable to continue working at age 42, I lost 25 years of what would presumably be my highest earning capacity.  Not only will my disability benefits (if and when I ever get them) be only about 30% of what I could be earning as a paralegal, but my retirement benefits go down with each year that I'm not earning good wages. 

There simply IS no "secondary gain" for the average person in applying for SSDI instead of continuing to work.  You're losing money -- lots of money -- every year that you don't work.

Yes, there are a rare few who simply don't want to work.  According to Mary's statistics, a whole 6 people in the state of Connecticut.  Extrapolate that to a couple hundred in the entire US.  Meanwhile, most of the million CFS patients have been denied benefits.  The "cost" to the economy of hundreds of thousands of people with not one cent of income to contribute to the economy far outweighs the savings of denying benefits to a few hundred liars.

But I can tell you from many years of working in the legal field, evaluating injured people, that the real fakers are usually outed.  At some point, they'll tick off the wrong person, who will report that the wheelchair-bound can walk for 12 hours at Disneyland, or the person who claims a severe back injury was seen moving furniture, and the faker will be charged with criminal fraud.  End of payments.

No one doing surveillance on me could possibly claim I'm faking.  I can do light gardening for about 5 minutes and then have to go lie down ... exactly what I've reported I'm able to do.  I go shopping and sit down in the middle of the aisle to rest ... exactly what I've reported I'm able to do.  There's no surveillance tape, and will never be any surveillance tape, showing me spending hours gardening or housecleaning or dancing, because, quite frankly, more than a few minutes of any of that leaves me gasping for breath and on the verge of fainting.  Go ahead, take a video of me out for a walk ... it'll prove that it takes me 1/2 hour to walk 1/2 mile, and I stopped to rest at least once every block.  EXACTLY what I've reported.

Like 99% of Disability applicants, I'm telling the truth.  My former employer says I can't work effectively.  Half a dozen doctors have made the diagnosis and those who were specifically asked to evaluate disability say I cannot work more than a couple hours a day.  I have orthopedic limitations on both shoulders (no reaching, lifting, carrying) that preclude even a secretarial job, and am limited to typing half an hour before the tendinitis pain starts (which definitely precludes a secretarial job) ... EXACTLY what I've reported.

But because there is no CFS-specific blood test, the abnormal test results have been ignored.  The doctor-imposed restrictions have been ignored.  The judge's ruling is made purely on prejudice against the name of the disease and not a full understanding of the ways in which the neurological effects affect my ability to work.

There ARE lies being told in my case, but not by me.  Lies by doctors who claim I'm "self-diagnosed" and "haven't worked since 1988" and "there are no abnormal tests".  Lies by the judge who invented a husband who supports me and my "choice" not to work.  Everything I say can be proven.

CDC says CFS is Real

http://www.cnn.com/2006/HEALTH/11/06/chronic.fatigue.reut/index.html

 

Hopefully all those doctors who have been saying for years that we are just lazy or crazy will eat crow now and admit that they have been wrong. 

Watch the PSA (or read the transcript)

http://www.cdc.gov/cfs/psas.htm

If you know anyone who works at a radio or TV station, please be sure that they are aware of these.

 

Well, I'll be!

I never thought I'd see the day ... CDC admits that CFS is "real".  <swoon>

You can watch the segment, or read the transcript, at msnbc.com.