Center for Excellence (and request for letters)

ON THE EDGE - The Whittemore Peterson Institute for Neuroimmune Diseases.

By Pat Fero

PART ONE
August 20, 2007

I am sitting on a curb underneath a lovely shade tree located in
narrow parking lot behind a medical science complex at the University
of NV Reno medical school. My husband Bruce is scouting the perimeter
in hopes of finding someone to ask if this is the right construction
site for the Whittemore Peterson Institute for Neuroimmune Diseases (WPI).

I look in the distance to see homes on brown hills. To my left is a
mountain, but not as high as Mt Rose, which is close to Incline
Village and Sierra Medical, the location of Dr. Dan Peterson's
clinic.   In front of me, within two car lengths and as far as I can
see is brown red dirt, rocks, and flat gravel roads. Occasionally a
white dump truck drops a load of dirt. What are they doing?  Is this
the future home of the Nevada Institute of Molecular Medicine?

I sense movement behind me. A familiar looking man comes through the
door to the parking lot. Imagine that. I stop him to confirm that I
am in the right spot. SO, YES INDEED…. this is the institute and off
to my right will be the wing housing is the WPI. The entire building
will cost 74 million dollars. (I met Tom Kozel, chair of immunology,
in September of 2006 at a WPI fundraiser.) I tell him that all eyes
are on RENO. Dr. Kozel comments that it is a massive building project
with a projected completion date of 2010. Just a few months ago, this
was a 70 foot ravine lined with bramble and rocks.  He moves on to his car.

I dreamweave about filling that enormous hole. It feels like my long
journey with CFS. I think about the hundreds of thousands of people
hoping for a better quality of life through improved medical care
that ultimately comes from better research.

Another white dump truck unloads dirt. How much dirt does it take to
fill 200 yards, by 100 yards, by 70 foot deep? (Huge and inaccurate
guess!)  I am in that truck and have been backfilling for years,
trying to create something from nothing.  I think…what if the work
they do at the WPI reveals the cause of Myalgic Encephalomyelitis.
YES!  They find markers and tests and treatments that can not only
help us feel better and save lives, but get us out of this time
consuming and hostile war with local medical people, with government
groups and among our own. What if?

Leaving my computer bag and water, I walk onto the dirt and over
piles of stone way to the right so I can stand on the spot where WPI
will stand in 3 years. I take pictures, and then start back. Someone
is looking into my bag and I start to wave and shout, but I am too
short and too far away for the man to hear me. I start to run in the
92-degree heat. "HEY" Finally the guy sees me and yells back, " I
thought someone forgot their stuff."

I am huffing away and feeling rather faint. I went farther than I
thought and I forgot about the heat and the valuables I left behind.
Once I recover a bit and drink ALL the water left, I chuckle and pull
out the laptop to write the paragraphs above.  I am crying, too; well
sniffling… I want people to know how much hope is riding on the WPI
as the number one research facility in the United States for ME and
CFS and the other diseases scientists intend to study.

Bruce returns. He talked to a construction guy and it turns out a
chain of trucks, left to right, is filling and dumping dirt to close
up the earth where the Institute will be build. He goes off to take
more pictures.

Pictures are at www.wicfs-me.org (See the Link: Whittemore  Peterson
Institute for Neuroimmune Disease)

On the Edge: The Whittemore Peterson Institute for Neuroimmune Diseases
Part Two
August 29, 2007
By Pat Fero

I researched the partnerships and collaborations and a bit of history
about the Medical School in Reno. Five major buildings form the
medical school complex. A major goal of University President Marvin
Glick, PhD (Chemistry  UW Madison) is to create a larger presence
outside Nevada for the research and training facilities the Reno
campus has to offer. Dr. Glick is most interested in academic
training for all fields as he is personally committed to topnotch
education for all students, especially those seeking advanced degrees.

To expand the Reno campus is a huge undertaking. Construction sites
and new facilities dot the campus. It appears that Nevada is
committed to generating vast sums of money to support programs and
increased faculty. In addition, expansion means building partnerships
and collaborations outside of the University.

John A. McDonald, M.D., PhD (Duke University, Biochemistry  Rice) is
Dean of Medical Sciences. Aside from this, in 2006, Dr. McDonald was
appointed to a new Nevada State Commission on Medical Research and
Health Care.  Dr. McDonald oversees planning (Small word  Big job)
for the Center for Molecular Medicine (CMM). This is a collaboration
among the Medical School, the Nevada Cancer Institute, a private
non-profit, and the Whittemore Peterson Foundation, also a private non-profit.

As I learn about this, I think about the numbers of people working on
the CMM, the money, the meetings, the negotiations and those who work
within these entities. I wonder if Dr. McDonald is aware that
thousands of people with ME and CFS and FM and other Neuroimmune
Diseases are watching and waiting for the completion of the CMM and
within it, the Whittemore Peterson Institute?

I feel sure that Dr. McDonald is not aware of the huge interest among
patients and scientists and Medical Professionals.  I imagine he is
busy all the time and when he goes to a planning meeting, a
roundtable of key people work through problems.  People understand
the Nevada Cancer Institute because all of us have been hearing about
cancers of one kind or another since we were born. We have cancer
centers in our communities. However, do people understand Neuroimmune
Disease? I don't.

Here is the plan. Would you please write a letter to Dr. McDonald to
thank him for his interest and work on the Whittemore Peterson
Institute for Neuroimmune Diseases? Bags of mail, BAGS of mail tell
people that what they are doing is significant. E-mail does not count
because if you are reading this, you know that you can get 100 E
mails a day and when busy, you must discard 75.

If you are an academic, a scientist or a medical professional,
especially international, your letter would be like a gold bar in a
mailbag. Please think about the possibilities for a new state of the
art research, training and clinical center in 2010.  It's all good!
You know how thankless a job it can be to attend planning meetings to
overcome obstacles and work on endless details. Please write a letter
to Dr. McDonald and if you are also sick, too, you might mention how
important such a center would have been before you became too ill to work.

If you have ME or CFS or FM, please, please get a handwritten letter
out to Dr. McDonald. You can give your former career, how many years
sick and just say thanks on behalf of all the patients you know in
your community. Ask your family members to write, too. I plan to ask
my 82-year-old mother to write a letter. Despite her own failing
health, she will do it if I can get the envelopes, address the
envelopes and get the stamps ready.

Bag of mail, 2 bags of mail, How about 3?

John McDonald, MD PhD
University of Nevada School of Medicine
1664 N. Virginia Street (0332)
Reno, Nevada 89557

If you can, please cc the President of the University:

Milton Glick, PhD
President - University of Nevada
1664 N. Virginia Street (001)
Reno, NV  89557


This is a personal request. I want a lot for us.J)  The plans are
made, the building is going up, and I want the message LOUD and
CLEAR. EYES are on RENO.

* * *

Karen here.

This center will be a godsend.  The only two CFS specialists here retired, so patients are stuck with only doctors we need to educate before they can treat us.  After dealing with doctors who don't know and don't care and won't read what they're sent, I'll gladly take Amtrak up to Reno to be treated by someone who knows what he's doing.

Please, take a moment to write the letter Pat asks for.  Handwritten would probably have a better chance of standing out and being read, but please don't let that deter you from writing if all you can manage is typed. 

How to define CFS

One of the original Incline Village patients recently observed to me "The principal meaning left in CFS is that all the "CFS definitions" which are not consistent with the people who originally received the term in the 1988 Holmes study group represent deliberate distortions. Deliberate distortions are indicative of a disingenuous agenda. When you select a group of people to be prototypes and base a syndrome upon them, you cannot subsequently ignore them and turn the illness into something else. At least, not without making a particularly strong statement about your intentions and methodology."

A patient who has researched/written a book about living with CFS comments that when CDC denies that CFS is actually ME, it's a new disease, "And when you think about it - in a way they are right. They HAVE created a "new" disease - chronic fatigue syndrome IS a new disease. (So new it doesn't exist ...) They have created an invisible, imaginary disease. The problem is that they have taken patients who have REAL diseases and insisted we have their imaginary disease. Think about that for a bit."

Yes, let's think about it. In the 1980s, a definition and diagnostic criteria were written based specifically on the disease that ravaged Incline Village. Over the next 20 years, they were re-written and re-re-written until they bear almost no resemblance to the original.

So, what do those of us diagnosed under the original criteria really have? We have symptoms that don't appear in the current diagnostic criteria, so I guess we don't have CFS any more. But no one has created a different name for what we do have, and through the actions of CDC, it's almost impossible to get an ME diagnosis in the US, even if you fit the criteria.

 

Tags: CFS, CDC, criteria, diagnosis, Incline Village

A Day in the Life

Yesterday, I had to run an urgent errand about 6 blocks away. With all the rest stops required, it took me half an hour to walk home (it should be about a 10-minute walk for a healthy person). The receipt shows I left there at 11:51; it was 12:22 when I fell onto the bed. I barely made it up the front stairs ... I was feeling light-headed when I started, and by the time I got to the top step, I was on the verge of fainting. I had to put my head down for a while before I could get the key into the lock so I could get into the house to lie down.

Then I had to lie down for over an hour before I had it in me to go to the kitchen (a mere 12 steps away) to make a sandwich for lunch. The couple minutes I was standing in the kitchen was enough to make me feel faint again. (Fortunately, I had a pre-made salad for dinner, so all I had to do was grab that out of the fridge, didn’t have to stand up to do any prep work.)

Here we are more than 24 hours later, and I’m still having nausea/vomiting/diarrhea (which usually signals I’ve over-exerted). I feel like I’m running about a 101 fever, but the digital thermometer says 97.6 (a sensation described by many CFS patients as a result of autonomic dysregulation). If I sit up, I get light-headed; I had to do my work yesterday lying down so that I wouldn’t pass out while doing it. Just walking the dozen steps to the kitchen this afternoon to get something cold to drink was problematic; I skipped lunch because breakfast didn’t stay down.

It’s called "post-exertional malaise" and it’s one of the ways to differentiate CFS from psychiatric problems – psych patients don’t describe the same problems after exercising. You can call the complaints of being light-headed "subjective" and "not credible", but the next step into fainting is an objective sign that can’t be disputed, and I’ve done that many times. (Unfortunately, not in front of the doctors and judges who insist that they cannot believe anything they don’t see with their own eyes.)  The vomiting and diarrhea are also objective symptoms that can't be disputed.

Researchers have demonstrated objective biochemical reasons for feeling terrible after exercise.

You could write these symptoms off to "the flu", but then you would have to accept the illogic that I catch "the flu" dozens of times a year.

In the years before I finally convinced a doctor to give me proper medication, I would feel like this after walking to the store inthe next block; mind you, as I was slipping into this relapse, I was walking 4-5 miles every day, so it wasn’t a result of a lifetime of being a couch potato. One week I could walk the two miles to work no problem, the next week it was a big problem, and the week after that I couldn’t manage it at all and had to switch to taking the bus.

It is absolutely impossible to write it off to "being deconditioned" when someone deteriorates that quickly, yet that’s exactly what some doctors try to do. (They claim to know the patient’s exercise habits better than she does. It "doesn’t make sense" so they turn it around in their head till they can create plausible reasons to explain why a 29-year-old woman of appropriate weight cannot walk more than a few feet without collapsing. Then they tell her what her history "should be" in order to support the doctor’s version, and get annoyed when the patient persists in telling the same story as before about previously spending weekends hiking in the nearby mountains instead of agreeing that the doctor’s theory is right, she spent all her free time watching TV and hates to exercise.)

Tags: exercise, malaise, exercise intolerance, CFS, dysregulation

Dissension in the Ranks

There have been some assertions by patient-activists trying to distance themselves from the disparaging CFS label that "there is no fatigue in ME". However, those activists with medical training who have reviewed the older pre-CFS medical literature assure us that "fatigue" was regularly mentioned in descriptions of Myalgic Encephalomyelitis, and was often described as being just as overwhelming as it is in CFS.

The primary problem seems to be the nebulous and competing definitions of "what is CFS?"

Originally, CFS was applied to the Incline Village epidemic of a disease which was compatible with the descriptions of prior ME. As detailed in Osler's Web, government scientists' own words make it clear that they did not want to acknowledge the severe and contagious nature of the epidemic, and brushed off any attempts by independent researchers to enlighten them that this was ME (which appears to be a variant of polio), not laziness or depression.

Various groups with ulterior motives, including a cadre of psychiatrists who saw lifetime employment for themselves in the reclassification to a psychiatric paradigm, have expanded the definition of CFS until some of those definitions now can be applied to any case of fatigue from any source. The requirement of "post-exertional malaise" and symptoms made worse by exercise has entirely disappeared from some definitions of CFS, so talking about that brand of "CFS" versus the original "CFS" is comparing apples and oranges. In fact, originally, a history of depression was supposed to preclude a CFS diagnosis, not, as some would prefer, CFS being a less-stigmatizing name for depression.

The Real Thing, which was known as Myalgic Encephalomyelitis or Post Viral Syndrome prior to the 1988 CDC-mandated name change, is precipitated by an infectious event. Although many doctors would like to disregard my 105 fever and try to relate my symptoms to an emotional reaction, those who knew me both before and after February 1987 support my version that I was happy and healthy and having no unusual stress; then one day I developed a high fever and flu-like illness and was never the same after that. It has nothing to do with some imagined emotional fragility due to my gender or my marital status, just as AIDS was eventually proven to have nothing to do with the original theory of "being depressed because you're gay". Those of us who got the diagnosis before special-interest groups started playing games with it all tell the same story, which sounds a lot more like a contagious disease than a mental illness.

Now we have people with CFS diagnoses who have no symptoms other than fatigue, who cannot imagine that what us old-timers are describing is the same thing they have. But the problem with that is not with the patients ... it's with the medical professionals who don't know that Chronic Fatigue Syndrome is not the same thing as chronic fatigue, and who ignore such little inconveniences as patients whose total symptom package doesn't match the criteria for CFS because they didn't have the viral onset required for the original CFS which was really ME.

CFS expert 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. However, CDC has staunchly refused to change the name back to ME (in fact, it is almost impossible to get an ME diagnosis in the US). After agreeing to "consider" a name change, CDC later announced that the adoption of a new name would be premature. In a catch-22, the present name trivializes the illness, thereby discouraging the research funding needed to uncover the pathophysiology of the disorder, but without a definitive pathophysiology, CDC refuses to change the name. This little game has been going on for 20 years, and the patients are the losers.

If they'd put the efforts into solving CFS that were put into AIDS, a million more Americans would be fully employed and contributing to the economy, instead of begging for disability benefits which are denied because CDC ensured that early public opinion was formed on the notion of fakery, and has never done the remedial PR to educate the populace that innumerable objective abnormalities have been documented since 1984. While there is no specific CFS test, there are plenty of blood tests and neurological tests that can prove the existence of "something very wrong", but if the tests aren't done, or the judges don't understand that this how CFS is proven, benefits will continue to be denied to deserving people who, if they had any other diagnosis, would be deemed unable to work.   Costs to the economy of this epidemic are variously estimated at $9B-$25B a year; wouldn't it be better for the country to find an effective treatment and get us back to work?

Neurologists have described the fatigue of CFS/ME as "central fatigue", something very different from common tiredness. It's caused by a dysfunction of the Central Nervous System. This notion is acceptable to doctors in other neurological diseases, but somehow is deemed impossible or "doesn't make sense" in CFS. I have often noted that people with Multiple Sclerosis are fawned over and pitied when they tell people their diagnosis, but when I describe the same symptoms and same level of disability, I get verbal abuse. If I were a different sort of person, I would take the easy way out and just tell people that I, too, have MS. I'd rather educate people that CFS is closer to MS than to depression in both symptoms and pathology; in fact, some early patients were given the mistaken diagnosis of "atypical MS". There's no MS-specific blood test, either; it's diagnosed in the same way as CFS. The only real difference is that MS (which affects less than half as many people) has a higher profile and more acceptance as a valid neurological condition, and people would be embarrassed to question the diagnosis or attack a patient suffering such a debilitating illness.

The truth is, a CFS patient who does not exceed her limits probably won't experience overwhelming fatigue. I was utterly exhausted after a few days of trying to work half-time. Once I identified my limits, and made an effort to stay within them, I was only plagued by excessive fatigue when I could point to a specific cause, such as a sleepless night or a concerted effort to do housework beyond my known limits or the aerobic exercise forbidden by Dr. Cheney. More severely affected patients might have limits so low that they are utterly exhausted by walking 10 feet to the bathroom; less affected patients (such as me for a dozen years mostly in remission) might have limits so high that they can work full-time without being overly fatigued (but doing something active over the weekend instead of getting adequate rest is the straw that breaks the camel's back and brings on a relapse).  At whatever end of the spectrum, the key to your best health is the same: don't overdo.

The internationally-accepted Consensus definition at http://www.mefmaction.net/documents/me_overview.pdf describes CFS in terms compatible with the historic ME definition (a disease essentially eradicated in the US not by vaccine but by CDC fiat in mandating it be renamed CFS, and very few doctors being activist enough to use its correct name in making the diagnosis). Before disparaging CFS as laziness or mental illness or unprovable fakery, it would behoove you to read this document written by doctors and researchers who actually know what they're talking about. It is a lot more informative than the limited information CDC wants you to know. The information is out there for those open-minded enough to consider all the facts.

Dr. Bell has completed his latest book, which he describes as "not for rookies": "It describes a theory that fibromyalgia and ME/CFS are parts of a spectrum of illnesses, called here Neuro-Immune Fatigue, and that the common end pathway of these illnesses is a dysregulation of cellular metabolism leading to the inability of the cell's mitochondria to utilize oxygen." To get your copy of this compilation and summation of the newest research by one of the top US experts on CFS, send $25 to David Bell, M.D., 1276 Waterport Road, Waterport, NY 14571. In about six months, he hopes to have available "a very short book entitled Chronic Fatigue Syndrome and Fibromyalgia: A Short Treatment Guide for the Primary Care Provider. This book is short (around 50 pages) and reader friendly, designed to be given to a primary care provider respectfully by a patient with ME/CFS or fibromyalgia in order to communicate in a simple and direct way some of the treatment approaches that experienced clinicians have put in place for some years now." I can assure you, after reading Dr. Bell's writings, only the most stubborn iconoclast could still cling to the idea that there's "no proof" that CFS is a valid physical illness with objective markers. If you have questions or comments, visit www.DavidSBell.com.

But, yes, I know, there will always be those who don't want to know the truth, either because it's more fun to verbally abuse people they perceive as powerless or because they are unable to accept any opinion but their own.

For those people I offer the opinion of noted researcher, Dr. Yunus, who voices what patients have complained of for years:

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.

I have had doctors completely rewrite my life history in order to "manipulate the data" to "say what they want it to say". Years of my career and repeated expert diagnoses disappeared in the attempt to document what was necessary to support the doctor's misogynistic prejudices that divorcees don't like being back in the work force.  And, unfortunately, this fiction is the version the SSDI judge chooses to rely on, despite proof from other sources that I was never a stay-at-home wife and got my diagnosis more than a decade before I was forced to apply for benefits.  To his mind, the one doctor who refuses to accept the virologist's diagnosis -- the only doctor who says what the judge wants to hear -- is the only one who is telling the truth and all the others are lying. 

Tags: ME/CFS, CFS/ME, fatigue, diagnosis, prejudice, misogyny, manipulation, CFS, myalgic encephalomyelitis, David Bell, Muhammed Yunus

Physical Therapy for Fibromyalgia

A Primer on Physical Therapy for Fibromyalgia Patients 8/25/07

This information is excerpted from the book Fibromyalgia: The Complete Guide from Medical Experts and Patients (May 2007, Jones and Bartlett), by Dr. Sharon Ostalecki, PhD.*

Loren DeVinney, an Orthopedic Manual Physical Therapist, explains: The mechanics of therapeutic heat and cold, ultrasound, and stretching exercises. An easy way to identify your maximum heart rate and stay within the exercise envelope thats beneficial for you. Two types of manual therapy - joint mobilization and soft tissue mobilization. And how to find/choose a knowledgeable body worker such as a massage or physical therapist.

Muscle Abnormalities

Fibromyalgic muscles are tender, painful, or both. Research shows structural abnormalities in the muscle fibers, which are primarily due to not enough oxygen (hypoxia). [Figure 15.1: Pain cycle due to abnormal Fibromyalgia muscles - shows a circle of symptoms starting with abnormal FM muscles and cycling through seven other abnormalities, each of which contributes to pain and is exacerbated by pain. These are poor posture, poor body mechanics, strain on muscles, micro trauma (injury) to muscles, muscle guarding, disuse due to fear of movement, and poor movement patterns - coming back full circle to abnormal FM muscles.]

Physical Therapy Treatments Heat and Cold

Heat applied with a moist or electrical heating pad relaxes muscles, increases blood flow, and facilitates healing. Cold inhibits blood flow (while applied) and blocks pain (numbs), leading to relaxation of the painful area by inhibiting the withdrawal reflex. Heat is frequently applied for 20 to 30 minutes. Cold, using a frozen gel pack wrapped in a towel, is applied for 10 to 15 minutes. Ice rubbed directly onto the skin is applied for about 5 minutes. Too much heat for too long can lead to swelling or burning and more pain. Too much cold can lead to frostbite. The heat packs sold in drug stores for one-time use (activated by exposure to air or by twisting them) can be used longer, because they aren't as warm as heating pads. Hot whirlpools can expose your whole body to heat. This helps when your whole body is sore. A temperature of about 104 degrees Fahrenheit for 10 to 15 minutes seems best for maximizing the benefits. If you want to soak for longer periods at home, the temperature should be no higher than 90 degrees or so.

Therapeutic Ultrasound

Ultrasound therapy is the application of high frequency sound waves to the body. Ultrasound treatment sets up a high frequency vibration in the muscle/tendon or ligament, generating a deep heat. This brings blood to the area, relaxing the muscles and facilitating healing. Most patients find ultrasound to be a comforting experience.

Stretching Exercises

There are hundreds of strengthening philosophies and techniques. Concentric contraction is less stressful to muscle fibers than eccentric contraction. In concentric contraction the muscles shorten; in eccentric contraction they lengthen, as for example when you lower a weight. A program that emphasizes concentric contractions with light weights is tolerated best by Fibromyalgia patients. General non-painful movement strengthens the muscle by re-educating it to work more efficiently. The number of repetitions is kept low, in the 10 to 20 range so as not to overstress one muscle. It is best to strengthen several muscle groups at a time, dividing the stress on the body more evenly. The physical therapist targets the muscles found to be weak on physical examination to determine what strengthening exercises are most appropriate. With moderate to severe pain, strengthening before complete muscle relaxation is obtained will trigger more pain. In those cases, the physical therapist may focus on relaxing the painful muscles while strengthening those that can tolerate strengthening exercise.

Aerobic Exercise

Getting enough aerobic exercise is difficult even for those who do not have pain. It requires motivation, willpower, and the energy to do regular exercise. Due to the nature of the syndrome, Fibromyalgia patients frequently have pain and fatigue with exercise, so they have another hurdle to overcome in doing aerobics. To understand aerobic exercise, you need to know that the body has two systems to supply itself with energy during exercise. One system initially supplies the energy. If exercise continues, the other system takes over the task. When you start to exercise (e.g., ride a bicycle) the body burns sugar in the blood and/or muscles for energy, because sugar is the most accessible fuel. Burning sugar requires no oxygen, so exercise fueled by this process is called anaerobic exercise. As we prolong the activity, the body switches energy systems so as not to deplete the supply of sugar in the blood, and it begins burning the fat. Burning fat requires oxygen, so this exercise is called aerobic exercise. Nearly everyone wants to burn fat hence the popularity of aerobics. Aerobic exercise carries many benefits: cardiovascular improvement, increased feelings of well-being, a general strengthening, and the release of pain-relieving substances such as endorphins in the brain. Achieving these benefits is crucial to making Fibromyalgia patients feel better. But it's a significant challenge.

Clinically we find that Fibromyalgia patients have low endurance and little strength. We also find that activity causes pain. Their muscles are easily injured, so post-exercise pain is common. Their muscles are less efficient than normal muscle. Like everyone, they try to avoid pain and therefore frequently avoid exercise. The key to doing aerobic exercise is in not doing too much just enough to realize a benefit. For the FM patient, the initial goal involves finding out how to move without increasing pain.

You can figure a basic guideline to gauge how much is too much aerobic exercise. First estimate your maximum heart rate (MHR) by subtracting your age from 220. For example, a forty-year-old persons maximum heart rate would be (220 minus 40 equals) 180 beats per minute. When you exercise keep track of your heart rate. Determine what percentage of your maximum heart rate (MHR) you are exercising at. For example, if you ride a stationary bike at a heart rate of 108 beats per minute, that is 60 percent of 180, the MHR in this example. [You will need a heart rate monitor, which resembles a wristwatch, to track heart rate and know if youre nearing your maximum. Your training index (TI) is an estimate of how much work your body is doing in your exercise program. You figure this value by multiplying three things: The percentage of your MHR you exercise attimes The number of minutes you exercisetimes The number of times you exercise per week. To realize cardiovascular benefits from aerobic exercise, your TI should be above 40. To keep from aggravating Fibromyalgic pain, keep it below 90. For example, if you ride a bike for 30 minutes (not counting warm up or cool down) at 60 percent of your maximum heart rate four times a week, your TI would be: 30 x .60 x 4 = 72. Thats within the acceptable range of 40 to 90. So, let's summarize with the formula for calculating your training index: (Number of Minutes of Exercise x Percent of MHR x Number of Sessions Per Week = TI) It is important to have variety in your aerobic exercise program. Riding a bicycle for 30 minutes uses the same leg muscles repeatedly. This can aggravate leg pain. Its better to use several different activities and therefore spread the stress over many different muscles so one group isnt overworked. A typical routine to begin with is 5 minutes on a stationary bike with no resistance; 5 minutes on a treadmill at a slow, comfortable speed (1.5 to 2.0 miles per hour); and 2 minutes on an arm bike with the lowest resistance setting. Severe FM patients may need to start with more brief periods and a much slower pace. Generally, the goal is to get up to about 30 minutes of aerobic activity. That can take several weeks, months, or years (in severe cases).

Joint Mobilization

Joints can have normal movement, not enough movement, or too much movement. If a joint doesn't permit enough movement, it is said to be hypomobile. If it is loose and permits too much movement, it is said to be hypermobile. A stiff and hypomobile joint needs mobilization. Manually gliding or distracting the joint is the usual treatment. A joint that moves normally usually requires no mobilization unless it is painful. Then low-amplitude oscillations (by manually vibrating the joint) can decrease the discomfort. * Hypermobile joints are treated with stabilization exercises and sometimes braces. Manipulating a hypermobile joint just makes it looser and more painful. So, it is very important for therapists to evaluate joint movement before using joint mobilization techniques. For example, the relief you get from cracking your neck (usually by a quick movement) is mostly due to the quick stretch of the joint capsule with the concurrent reflexive muscle relaxation. There are beneficial and not-so-beneficial cracks. Cracking (manipulating) a stiff joint can loosen it, and that helps. But manipulating a hypermobile joint also produces a crack and reflexive muscle relaxation, which may do more harm than good because it makes the hypermobile joint even looser. If much effort is required to get a crack, you are probably manipulating a hypermobile joint and should avoid doing so. Fibromyalgia primarily affects the central nervous system and the soft tissue, so joint treatment is secondary. Joint stiffness most commonly occurs in the thoracic (mid-back) section of the spine. This area almost always requires joint mobilization to loosen tight spinal joints so the patient can sit and stand properly.

Soft Tissue Mobilization

Soft tissue is composed of muscle fibers, tendons, fascia, and ligaments. * Muscle fibers are like cables wrapped in fascia (connective tissue much like a nylon stocking) into bundles. These bundles of muscle fibers are themselves bundled within fascia to form a muscle. Muscles are attached to bone by tendons, which are elastic and can stretch. Bones are connected to other bones by ligaments. Ligaments are inelastic and not meant to stretch; they should limit the range of joint movement so that the connected bones dont come out of joint. Joint capsules are similar to an elastic bandage that holds bones together but allows them to move. Any of these structures can develop trigger points. Dr. Janet Travell defines a trigger point as a focus of hyperirritability.3 All these structures have pain-sensing nerve endings in them, so trigger points cause pain. Fibromyalgia patients are especially susceptible to developing trigger points in muscle. Trigger points can be caused by resting contraction, micro-injury, poor posture, poor movement patterns, disuse, and immobilization. Muscles and fascia can also develop knots or restrictions. These restrictions are caused by the connective tissue fibers sticking together and bunching up. Treatment requires soft tissue mobilization/massage to free up restrictions and restore blood flow. The challenge in treating Fibromyalgia is doing this without increasing pain.

The following are some guidelines for applying soft tissue mobilization/massage: * Whole-body massage is usually not tolerated because FM muscles have a hard time reabsorbing waste products (like lactic acid). Massage tends to stir up these molecules, keeping them undissolved so that they don’t get quickly washed away. Direct/deep pressure causes ischemia (lack of oxygen) in the muscle and usually creates more pain, because part of the problem with FM muscles is they are already ischemic. Soft-tissue work should start superficially. Once the top layers are loosened, deeper soft-tissue mobilization may be tolerated. A stroke that goes parallel to the muscle fibers is well tolerated. Strokes that go perpendicular to the soft tissue fibers are used after the parallel strokes have begun to loosen muscle tissue. Using a cream (to prevent pinching the skin) that has no scent and few ingredients reduces the chances that the patient will be allergic to it or have a bad reaction.

Choosing a Muscle Therapist

Most Fibromyalgia dysfunction involves the muscles. So, it is important to involve massage therapists as well as physical therapists in Fibromyalgia management. Finding a massage therapist or physical therapist who can help manage Fibromyalgia can be a challenging task. It may require trial and error. Asking fellow Fibromyalgia patients (at a support group, for example) may help you tap into a network of health care professionals who are a good fit for you.

The following are some guidelines for selecting a body worker: Are they certified or licensed to practice what they claim to practice? Do they really know what Fibromyalgia is a muscle and nervous system problem? How does their technique for treating Fibromyalgia differ from their technique for treating healthy individuals? Deep, vigorous massage usually aggravates moderate to severe Fibromyalgia symptoms. Full-body, one-hour sessions are usually too long. Direct pressure into trigger points tends to cause flare-ups. Myofascial release or stretching must be preceded by gentle soft-tissue massage.

[N.B.  Dr. Cheney has stated repeatedly that patients with fibro can do aerobic exercise, but patients with CFS absolutely should not do anything aerobic because it will make them sicker.  If you have CFS, stick to stretching, resistance, etc., and avoid anything that stresses your heart.  See  http://www.dfwcfids.org/medical/cheney/heart04.htm ]

Tags: fibromyalgia, therapy, massage, treatment, pressure, stretching, ischemia

Dr. Pellegrino and Dr. Yunus on Fibromyalgia

The Fibromyalgia Spectrum - Part of the Big Picture in Understanding Fibromyalgia by Mark J. Pellegrino, MD 08-04-2007

Today I’m convinced Fibromyalgia is indeed a broader condition with various subsets - and a Fibromyalgia Spectrum model is helpful in organizing and educating patients, writes Dr. Mark J. Pellegrino, MD, a Fibromyalgia expert specialized in Physical Medicine and Rehabilitation.

This article - excerpted with permission from Dr. Pellegrino’s highly praised and reader-friendly book, Fibromyalgia: Up Close and Personal - explains the spectrum of conditions the doctor has observed in caring for more than 20,000 patients in his clinical practice. Dr. Pellegrino has been a Fibromyalgia patient himself since childhood.

As a senior resident at The Ohio State University in 1988, I gave a lecture on Fibromyalgia at the Physical Medicine Grand Rounds. One of my lecture slides was entitled Fibromyalgia, A Spectrum of Conditions? I discussed how Fibromyalgia appears to be a broader condition with specific subsets. Fibromyalgia was in that area between normal and disease the gray area. Some of the subsets were closer to normal, involving regional pain only, or milder symptoms without numerous associated conditions. Some subsets were closer to abnormal, with some features of connective tissue or rheumatic diseases, but were not quite there.

Today I’m convinced Fibromyalgia is indeed a broader condition with various subsets. I believe this information is helpful in explaining why everyone's symptoms are different even though they all have Fibromyalgia. This chapter addresses how the Fibromyalgia spectrum is part of the big picture in understanding Fibromyalgia.

Fibromyalgia Is a Distinct Medical Entity, and Appropriately So

We have long recognized, however, that many conditions overlap it, and various conditions exist that can lead to secondary Fibromyalgia. Dr. Muhammad Yunus, MD, [a professor and FM specialist at the University of Illinois College of Medicine] has developed the concept of Dysregulation Spectrum Syndrome (DSS) to describe how conditions overlap. Dr. Yunus describes DSS as representing various associated conditions that share similar clinical characteristics and pathologic mechanisms with Fibromyalgia. Ten conditions are in the DSS umbrella: Fibromyalgia, Chronic Fatigue Syndrome, Irritable Bowel Syndrome, tension headaches, migraine headaches, primary dysmenorrhea, periodic limb movement disorder, restless leg syndrome, temporomandibular pain syndrome, and myofascial pain syndrome. He predicts other entities will be added to this list in the future.

According to Dr. Yunus, Conditions in DSS Share a Number of Characteristics:

1. Patients with different conditions sharing similar profiles.

2. Common shared symptoms, such as pain, poor sleep, fatigue, and female predominance.

3. Hypersensitivity to pain.

4. No diagnostic pathology that can be measured.

5. Shared psychological complaints such as depression and anxiety.

6. Shared common genetic factor likely.

7. Common neurohormonal dysfunctions.

8. Treatments directed at the central nervous system leading to improvement.

9. TMJ [temporomandibular joint] dysfunction.

I have discussed the Fibromyalgia spectrum with my patients to help them understand the various subsets possible. I do not see Fibromyalgia as a member of a bigger family, but as the main condition. It is the founding father and keeps its name. If Fibromyalgia is the founding father, then the various overlapping conditions and subsets become the children. The name Fibromyalgia remains, but different subsets have unique characteristics and together they become the Fibromyalgia spectrum. This diagram shows the concept of the Fibromyalgia spectrum. The Fibromyalgia entity partially overlaps with the normal entity on one side and the disease entity on the other side. Within the Fibromyalgia entity are 8 subsets. The first subset is in the most normal portion of Fibromyalgia, and the 8th subset is in the most diseased portion of Fibromyalgia. Each number represents a distinct subset with distinct characteristics.

The Eight Subsets of the Fibromyalgia Spectrum Are:

1. Predisposed state

2. Prodromal [preceding] state

3. Undiagnosed Fibromyalgia

4. Regional Fibromyalgia

5. Generalized Fibromyalgia

6. Fibromyalgia with particular associated conditions

7. Fibromyalgia with coexisting mild disease

8. Secondary Fibromyalgia reactive to disease.

An individual can move up this spectrum from a lower numbered subset to a higher numbered subset, but once in a particular subset, she/he does not return to a lower numbered subset. One can achieve a remission, but stays in that subset. In other words, there is no going back.

Let's review the features of each subset.

Subset 1: Predisposed State The individual is asymptomatic. Clinical Fibromyalgia is not present in this state. The individual is at risk for developing Fibromyalgia due to hereditary factors, which may include one or both parents with Fibromyalgia or a rheumatic/connective tissue disease, or a sibling or first-degree relative with Fibromyalgia.

Subset 2: Prodromal State Prodromal means preceding, or the state leading to the condition. Clinical Fibromyalgia is still not present. There is no widespread pain or painful tender points. The individual is not asymptomatic, however. Associated conditions common with Fibromyalgia may be present in this stage, such as headaches, restless leg syndrome, fatigue, or irritable bowel syndrome. Pain may be present at times, but intermittently (not chronic, persistent pains). Even though the individual may have one or more associated condition(s), widespread persistent pain is not present, so therefore Fibromyalgia is not yet present. Typical Fibromyalgia pain must be present before we can diagnose clinical Fibromyalgia, no matter how many associated conditions may be present, but those who have numerous associated conditions are at risk.

Subset 3: Undiagnosed Fibromyalgia Chronic pain is now present, either regional or generalized in nature. This is the point of no return. The person has painful tender points which may or may not meet the American College of Rheumatology-defined 11 of 18 criteria. The person in this stage usually has milder symptoms and has not yet seen a doctor or been officially diagnosed with Fibromyalgia. If this individual were to see a knowledgeable physician, that diagnosis would be made.

Subset 4: Regional Fibromyalgia Individuals in this stage have been diagnosed with Fibromyalgia, but not generalized. Chronic pain is limited to one or a few areas such as the upper body or the low back. The symptoms may wax and wane. Usually, this subset is triggered by a trauma. I believe myofascial pain syndrome is part of this regional Fibromyalgia, and both terms are essentially synonymous. Myofascial pain syndrome has become familiar through the work of the late Dr. Janet Travell, MD, and Dr. David Simons, MD. Myofascial pain syndrome is defined by painful muscles and the presence of triggerpoints and taut bands of muscle fibers which are ropey and painful when palpated. An involuntary shortening of the fibrous muscle band can create a local twitch response. Some of those who work with myofascial pain syndrome will argue that it is a separate distinct entity from Fibromyalgia. I disagree. The similarities between myofascial pain syndrome and Fibromyalgia are far greater than their differences. They both have trigger points, tender points, ropey muscles, sympathetic nerve dysfunction, ATP abnormalities, peripheral and central mechanisms, regional and generalized versions, and associated conditions. Sound familiar? The treatments are essentially the same. As our clinical experience has evolved and our knowledge and research have become more refined, I think it is clear that myofascial pain syndrome is a part of the overall Fibromyalgia spectrum. Individuals with regional Fibromyalgia, over time, often develop generalized Fibromyalgia. Or they can remain in this stage indefinitely. Identifying the regional stage early and treating it can definitely help to prevent progression.

Subset 5: Generalized Fibromyalgia Individuals in this stage have widespread pain and tender points. They will usually meet the American College of Rheumatology-defined 11 of 18 criteria, but as previously explained, one can still have generalized Fibromyalgia with fewer tender points. Various associated conditions seen with Fibromyalgia can be present sleep disorder, irritable bowel syndrome, depression, fatigue, and so on. These associated conditions are not taking on a life of their own, so to speak, but are part of the whole and managed with the overall Fibromyalgia treatment. Regional Fibromyalgia can progress to this subset. Various causes of generalized Fibromyalgia include genetic factors, trauma, infections, and more, but secondary Fibromyalgia from a primary disease is not included in this subset.

Subset 6: Fibromyalgia with Particular Associated Conditions People in this group have developed associated conditions that are giving them particular problems which appear as separate entities requiring separate attention. Some of these particular associated conditions include irritable bowel syndrome, [Chronic Fatigue Syndrome], fatigue, tension/migraine headaches, and depression. None of these conditions in themselves have classic disease laboratory markers or cause tissue destruction, yet they may require treatments in addition to the overall Fibromyalgia treatment. Another associated condition is dysautonomia (dysfunction of the small nerves), which can cause abnormalities such as hypoglycemia [low blood sugar], hypotension [low blood pressure], cardiac arrhythmia, irritable bowel syndrome, and vascular headaches.

Subset 7: Fibromyalgia with Coexisting Disease Individuals in this category have a specific disease, and also have Fibromyalgia. The disease doesn’t necessarily cause Fibromyalgia, but can aggravate it if it’s already present. Examples of diseases that can be present and worsen the Fibromyalgia symptoms include: Hormonal problems (hypothyroidism, low estrogen, low growth hormone, and low cortisol) Infectious problems (yeast, parasite or viral infections). Low grade rheumatic or connective tissue disease (lupus, autoimmune disorders, dry eyes syndrome described by Dr. Don Goldenberg, MD, [Chief of Rheumatology at Newton-Wellesley Hospital and Professor of Medicine at Tufts University School of Medicine] may be part of a low grade Sjogren’s syndrome). * Arthritic conditions (cervical spinal stenosis, osteoarthritis, osteoporosis, scoliosis). * Neurological conditions (multiple sclerosis, polio sequelae, neuropathy, head injury residuals). For example, people who have both diabetes and Fibromyalgia will often have more painful Fibromyalgia because the diabetes caused the nerves to be more sensitive. Diabetes is a common cause of neuropathy, or damage to the small nerves, which is painful in itself and even more so with Fibromyalgia. One needs to keep the diabetes under good control to help the pain. * Lung conditions. I see a number of people who have Fibromyalgia along with a lung problem such as emphysema, asthma, chronic bronchitis, or heavy tobacco use. Cigarette smoking can increase Fibromyalgia pain. The nicotine in the smoke causes constriction of the blood vessels, decreasing blood flow, oxygen, and nutrients to the muscles, thereby increasing pain and spasms. Also, carbon monoxide in smoke enters the bloodstream and binds to the hemoglobin molecules in the blood. this blocks oxygen from binding to the hemoglobin, further decreasing oxygen availability to the muscles (and increasing pain). Stop smoking and your muscles will feel better! These diseases exist concurrently with Fibromyalgia but probably do not cause it. Any of these diseases can progress from a mild to a more severe state, and Fibromyalgia worsens as the disease worsens. The physician determines if the disease is coexisting with and aggravating Fibromyalgia (subset 7), or if a disease caused the Fibromyalgia (subset 8).

Subset 8: Secondary Fibromyalgia Reactive to DiseaseIndividuals in this category have secondary Fibromyalgia. They have a primary disease (for example lupus, rheumatoid arthritis) - and Fibromyalgia developed as a result of this disease. People in this subset probably wouldn’t have Fibromyalgia if they never had the primary disease. The primary disease requires treatment, and Fibromyalgia may improve with this treatment. However, the Fibromyalgia often requires its own treatment, and can continue to be a major problem even when the primary disease is treated or is in remission.

Overall - A Useful Explanatory Model I find that the Fibromyalgia spectrum provides a useful clinical model for me when evaluating and treating my patients. It helps me to organize them better! When I diagnose Fibromyalgia, I try to be as specific as possible about what the cause is and what subset it fits. This helps me to better explain Fibromyalgia to the patients and to individualize their treatment programs. Of course, if Ive diagnosed Fibromyalgia it would be subset 4 or greater. The patient wouldn’t be seeking a medical consultation for subsets 3, 2, or 1. If possible, I note the cause. Each subset can have flare-ups or remissions within it, and I note that as well, if appropriate. Subsets 1, 2, and 3 [predisposed state, prodromal state, undiagnosed Fibromyalgia] are useful in appreciating the progression of Fibromyalgia through the spectrum, and can be helpful when advising patients and family members who have specific concerns and questions.

Let’s Review Some Patient Profiles to Determine the Subset they Fit into in the Fibromyalgia Spectrum

Patient #1 Mary is a 25-year-old receptionist with severe neck and shoulder pain. She had always been very active with aerobics and bicycling and had never had any pain requiring treatment until after a motor vehicle accident when she was rear-ended and suffered a whiplash injury. The pain never went away, and when I saw her I found numerous painful tender points and trigger points with localized spasms in the neck and shoulder muscles. Mary has regional Fibromyalgia (subset 4). She was most likely predisposed to Fibromyalgia, and a traumatic event triggered the development of her regional Fibromyalgia. She leaped from predisposed state (subset 1) to regional Fibromyalgia (subset 4).

Patient #2 Martha is a 30-year-old housewife. She was diagnosed with Fibromyalgia 5 years ago, and she was at a stable baseline with her home program of stretches, exercises,and using a hot tub. In the past year, she has been having increasing pain and fatigue, and difficulty managing her Fibromyalgia. She reports that in the past year she has been getting frequent yeast infections. She is on birth control pills and has had a couple of bladder infections requiring antibiotics in the past year. Her more recent history is otherwise unremarkable. Martha has Fibromyalgia with a coexisting disease - chronic yeast infection (subset 7). Her birth control pills, antibiotic treatment, and perhaps Fibromyalgia have contributed to the chronic yeast infection. In turn, the yeast infection has aggravated her Fibromyalgia. [See also Dr. Pellegrino’s explanation of Candidiasis Yeast Infection and Nutritional Repair. ]

Patient #3 Jamie is a 38-year-old school teacher. She has lupus, diagnosed when she was 13 years old, and has been on various medications since then. She has been in remission for a number of years, but has developed widespread pain. Her sedimentation rate is not elevated to suggest active inflammation. Her clinical exam does not reveal any joint inflammation or active lupus findings, but she does have 16 of 18 painful tender points. Jamie has secondary Fibromyalgia from a disease (subset 8). In her case, the lupus is in remission, but her Fibromyalgia is causing her problems and needs to be treated.

Patient #4 Jamie’s 12-year-old son has been complaining of leg pains. The pains occur at nighttime, and Jamie has to rub the legs and use warm compresses. The pediatrician told her his pains were growing pains. Jamie’s son gets occasional headaches, and sometimes he feels exhausted. He plays many sports, and if he works out a lot his muscles are very sore for several days. On exam, there are no areas of pain or painful tender points. Jamie’s son is probably in a prodromal state (subset 2). He is at risk because his mother has Fibromyalgia and a connective tissue disease, and he has some associated conditions with intermittent pains, but has not developed the persistent widespread pain or painful tender points yet.

Patient #5 Bob is 42 years old and has an awful lot of pain for his age. His pains are more severe than everyday pain, and sometimes he has had to miss work. He is an assembly line worker. He mentions this to his primary care doctor when he is there for his yearly physical. He is examined and found to have 12 of 18 positive painful tender points. Bob had undiagnosed Fibromyalgia (subset 3) until he became official, entering the books with generalized Fibromyalgia (subset 5) after he saw his primary care doctor.

In Conclusion There is much disagreement and controversy among medical professionals and patients about categories and subsets of Fibromyalgia or similar conditions. I'm not attempting to stir the waters with my version of the Fibromyalgia spectrum - rather I'm trying to help you understand the fairly complicated nature of the condition and the different types I see. I find this model useful and practical in my everyday clinical practice.

Remember one of my mottos: Keep things as simple as possible and make sure they make sense!

Tags: fibromyalgia, pain, Pellegrino, Yunus

Two Doctors Speak Out

Another good commentary by Dr. John Greensmith:

"Work Phobia and Anxiety Disorder, Not Laziness"

Whenever the physical cause of an illness is not yet known, as is the case with M.E. (Myalgic Encephalomyelitis), [known in the US as CFS] it is often assumed that there is not one to be found and the sequence of steps usually followed is:

1) it doesn't exist;

2) those claiming to suffer from it are lazy malingerers, even though they have had a previously good employment record, or attendance at school and they just need to be "helped" back into work by a carrot or stick approach;

3) it must be a psychiatric illness, even though there is no previous psychiatric history and the  recommended treatments are a spell in a psychiatric hospital for the most unfortunate, or some short-term psychotherapy such as Cognitive Behaviour Therapy (CBT), the first of which scars people for life, even makes some end their own life; the latter of unproven lasting benefit, for more than three or four decades.

And, still, step 4 is not considered: that is, we don't yet know the physical cause and ought to be looking for it.

When a physical or neurological cause is eventually discovered (as in the case of MS, for example, which had previously gone through the same phases as M.E. is going through now), the doctors and researchers who had resisted the idea will now say that they were acting on the best evidence available at the time - usually their own and ignoring any other that did not fit their prejudice - and the same process will be repeated for the next generation of patients with an illness not yet understood.

There are perhaps 150,000 M.E sufferers [in the UK], some diagnosed for as long as five decades, praying for researchers to learn from previous mistakes and proceed more expeditiously to step 4, well-designed biomedical research, supported by adequate funding to carry it out.

Yours sincerely
Dr John H Greensmith
MEFreeForAll.org

 

On a related note, Dr. Michael Wilkes writes at http://www.sacbee.com/health/story/342749.html

When we are young, we're taught never to make promises we can't keep. We learn that a promise is something people come to expect and plan around.

But as we grow older, we find ourselves making promises without thinking through the consequences. Sometimes we make a promise when we are under emotional pressure, and sometimes we don't have all the information we need.

We learn that our promises can have a profound impact on a recipient -- people generate expectations and alter actions based on a belief that our promises will be kept.

In medicine, promises are particularly important. In fact, promises are at the core of the doctor-patient relationship.

<snip>

In this case, the junior doctor promised -- with good intentions -- something that was not possible in our society. Patients, if they are of sound mind, need to be involved in their own health decisions. ... ethics, which require patients to make their own medical decisions.

<snip>

The family considers the problem a lack of honor and a promise not kept. The doctor blames poor communication and cultural misunderstandings.

Everyone in this case loses. The mother, because she has not been prepared for cancer and is caught off guard. The family loses trust in American doctors. The junior doctor loses the chance to remain involved in the care of a woman she liked, and she loses the chance to demonstrate the devotion she has to her patients and the privilege it is to be a doctor.

* * *

This is the problem ME/CFS patients face: doctors who lose sight of the fact that it is a PRIVILEGE to be a doctor, and allow their own ego and hubris to eclipse the patient's right to make her own medical decisions. 

Instead of saying "I don't know" or even "Modern Medical Science doesn't know", they come up with theories that blame the patient, and when the wrong medication doesn't work, they blame the patient for that, too.  As a result, a huge percentage of CFS patients have lost faith in Modern Medical Science.  The promise to "first, do no harm" has been violated so often that they have no reason to trust any more.

I was promised "I want to help you" and relied on that promise.  Yet, when I attempted to make my OWN medical decision, that I did not want to take medications I'd previously been told not to take because of prior adverse reactions, I was inevitably overruled and told to do what I was told.  The notion that I might have some valid information was foreign to them; another doctor warned me that the last prescription could have been fatal if I had blindly trusted those doctors to put my health ahead of their egos.

When I asked for the treatment recommended by my former specialist (and other CFS experts), it was unreasonably refused, not because it was dangerous or experimental but because it required the doctor to re-think his position on CFS.  As detailed by Dr. Greensmith, someone with a stellar history of employment was wrongly tagged as a malingerer, and a psychiatric history was invented where none existed, in order to justify handing out anti-depressants that specialists and researchers know to be totally useless against CFS.  The doctor didn't bother to verify my work habits with my former employer, or my psychiatric history with records maintained by his own medical group; his own "prejudice" (to use Dr. Greensmith's word) clouded his thought process and these falsehoods found their way into my medical records to justify what the facts would not support.  When two psych evaluations were sent to him stating that there was NO depression, the symptoms were compatible with physical illness, he ignored those, too.

Like the SSDI judge, that doctor only wanted to see evidence that supported his position, and anything that contradicted him was summarily disregarded.  As observed by Dr. Greensmith, they "say that they were acting on the best evidence available ... their own, and ignoring any other that did not fit their prejudice."  You can put tons of research materials in front of such people, and they will still insistthat they know better than people who've devoted their lives to researching the disease.

Perhaps in 1984, when the first modern CFS outbreaks occurred, it was plausible that some could argue that CFS is malingering or psychiatric.  But in the next few years, numerous OBJECTIVE markers were discovered by doctors treating the patients, who diligently sought a valid reason for the symptoms (as opposed to CDC doctors, who never saw patients and outright refused to when offered the opportunity). 

Anyone after 1990 who was still of the opinion that CFS is fakery was clearly oblivious to the facts demonstrated by uncommon blood tests, endocrinology, brain scans, neurological exams, etc. discovered by the researchers.

Yet, in 2000, I was still being tagged as a depressed malingerer by a man who could not get past the sexist notion that divorcees want alimony, not jobs, nor process the notion that I'd been the primary breadwinner throughout the marriage.  When presented with information that The Association was recommending cortisol tests, which would be diametrically different with CFS than depression, the request for that test was ignored, making it clear that he didn't want to see proof.  His colleagues similarly refused to order tests which would have documented the problems I described; at my last appointment in 2003, they were still ordering only those blood tests which should be negative in CFS, and brushing aside requests for tests which would be positive.

A later specialist, horrified by the documented failure to prescribe pain medication for a patient reporting severe pain, and sleep medication for a patient reporting severe sleep disturbance, asked the rhetorical question "what would it have hurt?" to give me a trial of the medications I told them the experts recommended.  The only answer can be, it would have hurt their egos to admit they might be wrong.

The medical community must learn -- repeat after me -- The PATIENT comes first; my ego comes second. 

Don't, like the junior doctor described by Dr. Wilkes, make promises you can't keep.  The patient understands "I want to help you" to mean that you will do anything possible to get her healthy and back to work, not that your mind isclosed.  If you mean "I've already made up my mind and will ignore any evidence that I'm wrong", say so, so that she can find a doctor willing to do the right thing for her, and not just protect his own ego.  As he says, I "generated expectations and altered actions" because I believed the promises made to help me; if I hadn't expected that promise to be kept, I would have found another doctor whom I did believe.

The simple phrase "you'd be better off with another doctor" would've been more beneficial to my long-term health than the empty promises I got for years.  And fixing my health would've gotten me back to work faster than bullying and cajoling, telling me that I can do a job which I know full well I am physically and cognitively incapable of performing to an employer's satisfaction because I have repeatedly tried and failed to do similar tasks.  His prejudice led him to conclude that I hadn't tried, and wouldn't try unless I was bullied to return to work, and to ignore any evidence that I'd already lost one job and been denied dozens of others because I couldn't perform the necessary tasks.

My only mistake was in believing worthless promises from doctors at a place renowned for research who had no intention of doing the research required for open-minded inquiry and active pursuit of a physical reason for my symptoms.  They must bear the responsibility of yet another CFS patient now viewing doctors with distrust.  I didn't reach this point on my own.

Tags: CFS/ME, ME/CFS, doctors, trust, CFS, evidence, prejudice, malingering, psychiatric, research, promises, lies

More Objective Evidence of CFS

Since a commenter has claimed that CFS can be faked be people who are too lazy to work, I refer here to three newly-published Belgian studies proving that there are biological signs proving that CFS is real. These are not blood tests which are commonly performed, and therefore, many doctors will never do them to prove conclusively that their patients are truly ill. (One of my doctors, on getting negative results on basic first-round blood tests, decreed there was nothing to be gained by doing additional testing; in fact, negative results on the most common blood tests are to be expected with CFS – those conditions must be ruled out before CFS can be considered. When I had one of the uncommon tests five years later, one which tests for infection or inflammation, the results were so "sky high" that they were assumed to be lab error until a re-test was even more "off the charts". [direct quotes from doctor’s office])

1. Decreased expression of CD69 in chronic fatigue syndrome in relation to inflammatory markers: evidence for a severe disorder in the early activation of T lymphocytes and natural killer cells. Journal: Neuro Endocrinol Lett. 2007 Jul 11;28(4) [Epub ahead of print]

2. Not in the mind but in the cell: increased production of cyclo-oxygenase-2 and inducible NO synthase in chronic fatigue syndrome. Journal: Neuro Endocrinol Lett. 2007 Jul 11;28(4) [Epub ahead of print]

3. Not in the mind of neurasthenic lazybones but in the cell nucleus: patients with chronic fatigue syndrome have increased production of nuclear factor kappa beta. Journal: Neuro Endocrinol Lett. 2007 Jul 11;28(4) [Epub ahead of print]

SUMMARIES

Decreased expression of CD69 in chronic fatigue syndrome in relation to inflammatory markers: evidence for a severe disorder in the early activation of T lymphocytes and natural killer cells. Journal: Neuro Endocrinol Lett. 2007 Jul 11;28(4) [Epub ahead of print] Authors: Mihaylova I, Deruyter M, Rummens JL, Bosmans E, Maes M. Affiliation: MCare4U Outpatient Clinics, Belgium. NLM Citation: PMID: 17693977

Patients with chronic fatigue syndrome (CFS) suffer from immune abnormalities, such as immune activation and decreased immune cell responsivity upon polyclonal stimili. This study was designed to evaluate lymphocyte activation in CFS by using a CD69 expression assay. CD69 acts as a costimulatory molecule for T- and natural killer (NK) cell activation. The expression of the CD69 activation marker on T cells (CD3+, CD3+CD4+, and CD3+CD8+) and on NK cells (CD45+CD56+) was significantly lower in CFS patients than in healthy subjects. Patients with CFS show defects in T- and NK cell activation.

Not in the mind but in the cell: increased production of cyclo-oxygenase-2 and inducible NO synthase in chronic fatigue syndrome. Journal: Neuro Endocrinol Lett. 2007 Jul 11;28(4) [Epub ahead of print] Authors: Maes M, Mihaylova I, Kubera M, Bosmans E. Affiliation: MCare4U Outpatient Clinics, Belgium. NLM Citation: PMID: 17693978

CFS is accompanied by signs of increased oxidative stress and inflammation in the peripheral blood. We found that the production of COX-2 and iNOS was significantly higher in CFS patients than in normal controls. There were significant and positive intercorrelations between COX-2, iNOS and NFkappabeta and between COX-2 and iNOS, on the one hand, and the severity of illness, on the other. The results suggest that a) an intracellular inflammatory response in the white blood cells plays an important role in the pathophysiology of CFS; b) the inflammatory response in CFS is driven by the transcription factor NFkappabeta; c) symptoms, such as fatigue, pain, cognitive defects and the subjective feeling of infection, indicates the presence of a genuine inflammatory response in CFS patients; and d) CFS patients may be treated with substances that inhibit the production of COX-2 and iNOS.

Not in the mind of neurasthenic lazybones but in the cell nucleus: patients with chronic fatigue syndrome have increased production of nuclear factor kappa beta. Journal: Neuro Endocrinol Lett. 2007 Jul 11;28(4) [Epub ahead of print] Authors: Maes M, Mihaylova I, Bosmans E. Affiliation: MCare4U Outpatient Clinics, Belgium. crc.mh@telenet.be. NLM Citation: PMID: 17693979

Chronic fatigue syndrome is accompanied by an activation of the inflammatory response system and by increased oxidative and nitrosative stress. Nuclear factor kappa beta (NFkappabeta) is the major upstream, intracellular mechanism which regulates inflammatory and oxidative stress mediators. Production of NFkappabeta were significantly higher in CFS patients than in controls. There were significant and positive correlations between the production of NFkappabeta and the severity of illness as measured with the FibroFatigue scale and with symptoms. The results show that an intracellular inflammatory response in the white blood cells plays an important role in the pathophysiogy of CFS and that the symptoms of CFS reflect a genuine inflammatory response in those patients.

It is suggested that CFS patients should be treated with antioxidants, which inhibit the production of NFkappabeta, such as curcumin, N-Acetyl-Cysteine, quercitin, silimarin, lipoic acid and omega-3 fatty acids.

* * *

Yes, any applicant for Disability benefits can claim to have any condition they please, but receiving benefits is not automatic. The approval procedure is designed to verify their claims, with medical professionals reviewing the medical records, doctors confirming the findings of the patient’s own doctors, psychiatric evaluations, and a VocRehab expert evaluating the whole package to determine if the person is able to work satisfactorily (e.g., adequate attendance and production). (See footnote)

It is ironic that the doctors on behalf of SSDI and my private Disability insurance noted worse problems than some of my treating physicians, and that every one of the psych evaluations has stated that the psych diagnoses made by the MDs are wrong, the psych could find no evidence of that condition, and noted that my symptoms were those of a physical ailment because the emotional factors required for a psych diagnosis were missing. (People with fever or flu have fatigue, difficulty concentrating, pain, etc., without warranting a depression diagnosis.)

N.B. Making a claim on your Disability insurance is no more suspicious than making a claim on your homeowners or car insurance. I had a job which required me to repeat "1 person in 3 will become disabled, at least temporarily, before age 65", and after repeating it often enough, you scare yourself. I was the primary breadwinner, so it made sense for us to buy the insurance, just like it makes sense to insure your primary asset (your house) to ensure you won’t be living in your car after a fire. However, the insurance does not replace your whole paycheck – I could be earning more than twice as much as a paralegal (plus health insurance, which I currently pay for myself, and contributions to a retirement plan, which would add a substantial amount to my take-home pay); it is a help in paying the bills, but not an incentive to quit work. In the 7 years that I have been working part-time instead of full-time, my Social Security retirement benefits have gone down by $200 a month, and will continue to go down every year that I work part-time.

If that poster is correct that this blog is well-read in the medical community, then I'm glad.  Maybe they'll learn something from it about things that CDC will not publicize because they contradict Reeves' psych/stress theory.  My primary goal is to get my fellow patients the correct treatment so they don't wind up permanently disabled as a result of trusting doctors who use disproven/outdated treatments and don't know what's currently recommended, and so they get the tests that will help them prove their Disability claims.

FOOTNOTE:

Work Feasibility Evaluation Checklist

Program in Occupational Therapy

Washington University School of Medicine

Section 1 - PRODUCTIVITY

Quantity - amount of dependable work output

Quality - quality of dependable work output

Attendance - reporting to work on assigned days

Workplace Tolerance - remaining in the workplace for the assigned duration

Timeliness - Reporting to work and returning from breaks on time

Work Task Instructability - ability to perceive, understand, and follow work instructions

Work Task Memory - ability to remember instructions, procedures and rules

Concentration - ability to focus attention on assigned tasks

Tags: CFS, disability, objective, test, inflammatory markers, lymphocytes, natural killer cells, T cells, oxidate

Virus and Weight Gain

Study: Virus may contribute to obesity - CNN.com

 

"New research announced Monday found that when human stem cells -- the blank slate of the cell world -- were exposed to a common virus they turned into fat cells. They didn't just change, they stored fat, too."

 

 

It's been noted that CFS patients tend to gain weight in relapse, which has been attributed to a change in metabolism.

 

I've been in and out of relapse many times.  As I'm going into relapse, I'll gain weight without changing my eating and exercise habits one iota.  And as I'm coming out, at least half of that weight will drop off without doing a thing about it.

 

So I have no doubt that my weight gain is directly related to having a virus, because before I got sick, my weight never varied by more than a pound. 

Tags: virus, obesity, weight gain, CFS

Better Care for Chronic Illness

Coalition Launched To Lobby For Better Chronic Illness Care

http://www.kcra.com/health/13917457/detail.html?treets=sac&tml=sac_health&ts=T&tmi=sac_health_1_10150908202007

"Gov. Arnold Schwarzenegger has proposed several ways to reform the health care
system. Now's he's got support from a newly formed coalition of people
concerned about chronic illness."  http://www.tmjsociety.org/cccc.htm

Over 16 million Californians (that's nearly half the population!) have chronic health conditions.

"The group's goal is to see California's broken health care system repaired with better care for the people who need ongoing treatment for ongoing, and often progressive, conditions.

"Crisis management health care just doesn't work anymore. We need to make a commitment towards chronic care management and preventive care," said Michael Negrete with the Pharmacy Foundation of California."

And this is, unfortunately, the problem that CFS patients have run into -- there's simply not much interest in treating chronically-ill patients.  Doctors like to see successes; it's depressing to deal with a patient who gets worse no matter what you do.  But just like schools are obligated to provide education to even those with no hope of going to college, doctors are obligated to provide care to even those with no hope of achieving perfect health.  It's part of the job, deal with it!

Another problem faced by CFS patients is doctors who attribute every symptom to the CFS.  Tests which would be ordered for other patients are denied.  When I finally got to a gastroenterologist and explained that although I'd met the criteria for screening years ago, including family history,  the doctors wouldn't order a colonoscopy because I have CFS.  Apparently, they thought that made me immune to other diseases.  He muttered that he almost wished he'd find cancer so that I could sue them.

I'm hoping this new coalition gets the point across that CFS patients need care every day, not just when they've deteriorated enough to land in the hospital.

Tags: chronic illness, CFS, California, health care

Live Chat with Dr. Jason

Thanks to Steve for getting the complete text for me while my computer is giving me fits!

ME/CFS -Q&A Dr. Leonard A. Jason, PhD

http://www.immunesupport.com/library/showarticle.cfm/ID/8232

Live Chat Q&A with Chronic Fatigue Syndrome Research and Policy Leader Dr. Leonard A. Jason, PhD
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

ImmuneSupport.com

08-14-2007

Welcome to our Live Chat Event with Dr. Leonard A. Jason, PhD - a clinical & community psychologist, and a prolific ME-CFS researcher.

As head of the Center for Community Research at DePaul
University since 2000, Dr. Jason has several different
ME-CFS studies going on at any one time.
Community-based research is his specialty, with a focus
on defining "the true face" of CFS and other 'controversial' illnesses.


As a new member of the federal government's CFS
Advisory Committee - and vice president of the
science-focused International Association for CFS/ME -
Dr. Jason is deeply involved in the debate on research
policy, standards of care, and diagnostic criteria. And as a
dedicated member of the CFS Name Change Advisory
Board, he has strong views on the need for a name
change.


* * * *

Q: Dr. Jason, based on your patient surveys and other research
to describe functioning in CFS patients, how ill are people with
this illness, Chronic Fatigue Syndrome?


Dr. Jason: Patients with CFS are more functionally impaired
than those suffering from type II diabetes mellitus, congestive
heart failure, multiple sclerosis, and end-stage renal disease.



* * * *

Q: What are the costs of this illness?


Dr. Jason: Based on data that our group presented at the last
IACFS/ME conference in Florida, the total direct and indirect
costs due to CFS range from $18.7 billion to $24.0 billion a
year.



* * * *

Q: I assume those are estimated U.S. costs. Can Canadian or
European costs be extrapolated?


Dr. Jason: Yes, that is possible, but one would need to figure
out the exact population, and then a multiple factor. However,
you can clearly see that this is a major cost to our society, and
not enough is being done to help the hundreds of thousands who
are ill with this illness.



* * * *

Q: Is it true that a particularly high percentage of patients with
ME-CFS have experienced disrespectful treatment by the
healthcare system?


Dr. Jason: Research has found that up to 95% of individuals
seeking medical treatment for ME-CFS reported feelings of
estrangement - and one study found that 66% of individuals with
ME-CFS believed that they were made worse by their doctors'
care.



* * * *

Q: Do you think that health care professionals continue to doubt
the scientific validity of this diagnosis?


Dr. Jason: Yes, and the name selected to characterize an
illness, such as 'Chronic Fatigue Syndrome,' can influence how
patients are perceived and ultimately treated by medical
personnel, family members, and work associates. Our research
has found that the negative stigma associated with CFS may be
partially due to the trivializing name that was given to this
disorder in 1988.



* * * *

Q: Several investigators have suggested that the central
problem with patients experiencing CFS is a psychosomatic
preoccupation with one's fatigue. What is your view on this?


Dr. Jason: Our work could not find any support for this model,
and we have challenged that work in a recently published article.
[See for example "A population-based study of Chronic Fatigue
Syndrome experienced in differing patient groups: An effort to
replicate Vercoulen et al.'s model of CFS.":
http://www.immunesupport.com/library/showarticle.cfm/id/8219 ]


* * * *

Q: Is there any medical data that suggests someone with CFS
has a greater likelihood of developing cancer and/or some other
life-threatening condition?


Dr. Jason: Several studies have now occurred on this critically
important issue with different outcomes. I was connected with a
study indicating that there were some very serious outcomes
and my study is in the literature. However, what is needed are
natural course studies of patients over time. That will answer this
critical question.
[See for example "Causes of death among patients with Chronic
Fatigue Syndrome." :
http://www.immunesupport.com/library/showarticle.cfm/ID/8197 ]


* * * *

Q: I was in the CFS DePaul Study in 2004. Are there any
published research articles on this study yet?


Dr. Jason: We are just sending the papers out to journals, so
will have to wait a few more months until they are accepted and
published. As you know, if we publicly release findings before
publication we can jeopardize the journals' being willing to
publish our articles. But I do think the findings will be of
importance to the field. Thank you for helping out our efforts.



* * * *

Q: What do you think of the new CDC estimates of CFS
prevalence? [Increased in 2006 to 4 million people in the U.S.
( http://www.cdc.gov/cfs/cfsdiagnosis.htm ), compared with an
estimated 900,000 to 1 million previously.]


Dr. Jason: The crux of the issue has to do with two methods to
determine the prevalence rate being used at the same time with
a group of individuals in Wichita, Kansas. One traditional
method that has been used for the past decade found 16 cases
of ME-CFS, and the other, newer, CDC empirical method found
43 cases. The new method has found about 3 times as many
cases, and that is the issue that needs to be closely examined. I
believe that expanded criteria are the reason for the new CDC
estimates of there being 4 million people in the U.S. with this
illness.



* * * *

Q: Do you think that the criteria used by the CDC to determine
the prevalence of CFS in their recent Georgia study (
http://www.immunesupport.com/library/showarticle.cfm?id=8063 )
are better than previous ones, or are they too broad?

[Note: This study "estimated 2.54% of the Georgia population
suffers from CFS, which is 6- to 10-fold higher than previous
population-based estimates in other areas."]

Dr. Jason: About 4% of the population has 6 or more months of
fatigue, but there are many reasons for this - many of these
people do not have ME-CFS. So, the breadth of the criteria will
have enormous implications for research and treatment, in my
opinion. If most of those 4% are included, I feel that we are
broadening the criteria and this will make it more difficult to find
biological markers for this illness.



* * * *

Q: Why all the debate about prevalence rate?


Dr. Jason: For an important reason. Accurate measurement
and classification of illnesses such as ME/CFS, FMS, and IBS
is imperative when evaluating the diagnostic validity of these
controversial illnesses.


Measurement that fails to capture the unique characteristics of
these illnesses might inaccurately conclude that only distress
and unwellness characterize these illnesses, thus inappropriately
supporting a unitary hypothetical construct called "functional
somatic syndromes." In the end, using a broad or narrow
definition of ME-CFS will have important influences - on
ME-CFS epidemiologic findings, on rates of psychiatric
comorbidity, and ultimately, as I said, on the likelihood of finding
biological markers.



* * * *

Q: Isn't there a new case definition from Canada?


Dr. Jason: A new ME-CFS clinical case definition was
developed in Canada that used the term 'Myalgic
Encephalomyelitis/Chronic Fatigue Syndrome' (ME-CFS) (See
Carruthers, et al., 2003:
http://www.cfids-cab.org/MESA/ccpccd.pdf ). In one of our
studies, we found that the Canadian criteria selected patients
with less psychiatric co-morbidity, more physical functional
impairment, and more fatigue/weakness, neuropsychiatric, and
neurological symptoms.



* * * *

Q: Why won't the CDC accept the Canadian definition?


Dr. Jason: An excellent question. Right now there has not been
too much research on this case definition. However, more
research is needed, and once that occurs, we will be able to find
a more homogeneous group of patients. You might want to pose
this question to the CDC.



* * * *

Q: Dr. Jason, have you noticed any one common denominator in
adults who develop CFS?


Dr. Jason: If you were to ask that for cancer, you would
probably find dozens of reasons that a person might develop it. I
believe that there are different types of what we think of as
ME-CFS, and subgroups will help us better understand them.



* * * *

Q: Are you in favor of 'subtyping' in CFS research - and if so,
how?


Dr. Jason: The identification of clinically significant subgroups
is the logical next step in furthering ME-CFS research. There
might be multiple pathways leading to the cause and
maintenance of the neurobiologic disregulations and other
symptoms experienced by individuals with ME-CFS. Depending
upon the individual and subtype, these may include unique
biological, genetic, neurological, and socioenvironmental
contributions.


Subgrouping is the key to understanding how ME/CFS begins,
how it is maintained, how medical and psychological variables
influence its course, and in the best case, how it can be
prevented, treated, and cured. I have a paper on this that was
published, and it goes into much more detail.
[See "Exploratory subgrouping in CFS: Infectious, inflammatory,
and other":
http://www.investinme.org/Documents/Journals/Journal%20of%20IiME%20Vol%201%20Issue%201.pdf
]



* * * *

Q: What is the status of the campaign to change the name of
CFS in the U.S.?


Dr. Jason: Much activity is going on, and you will be hearing
more about that in the coming months. There is an effort to try to
bring different groups together on this issue, but as you might
imagine, it is a challenging task.



* * * *

Q: In your opinion, what is a better term for CFS - Myalgic
Encephalopathy or Myalgic Encephalomyelitis?

Dr. Jason: A very good question. Years ago, I was in favor of
the former term, but I am now convinced the latter term is more
appropriate, for multiple reasons. Problem is that the scientific
community has not supported this version, so I tend to just say
"ME-CFS" - and getting folks to even use that acronym is a vast
improvement.



* * * *

Q: Aren't you concerned that changing the name to "ME-CFS"
will dilute the original definition (Ramsay, et al.) of Myalgic
Encephalomyelitis and result in even less research into ME?


Dr. Jason: Another very good question. Yes, I am concerned
about this, and it is the reason I feel it is so important to be
thinking of the ME-CFS Canadian criteria, which try to
operationalize a very different way of thinking about diagnosing
people with this illness.



* * * *

Q: Was there a recent name change to the scientific
organization for CFS?

Dr. Jason: The organization of researchers - called the
International Association of CFS - changed their name to the
International Association of CFS/ME - the IACFS/ME. You can
find the link to this organization at http://www.aacfs.org/



* * * *

Q: Didn't the IACFS/ME recently publish a pediatric case
definition of "ME/CFS"?


Dr. Jason: Yes. In the past, kids with this illness were
inappropriately diagnosed with an adult case definition.
Recently, I served as the chair of an international task force, and
published guidelines for a new case definition for children and
adolescents - with the name Pediatric ME/CFS. We based our
criteria on the work done by those who created the Canadian
ME/CFS criteria. [See "A Pediatric Case Definition for ME and
CFS" at the IACFS/ME website:  http://www.aacfs.org/p/291.html ]



* * * *

Q: What is the Chronic Fatigue Syndrome Advisory Committee?


Dr. Jason: The U.S. Department of Health and Human Services
assigned this committee (the CFSAC) the task of monitoring
CFS activities within the federal government and making
recommendations on CFS policy change to the Secretary of the
Department of Health and Human Services. I was recently
appointed to this committee. I have been asked to chair the
Research Sub-Committee as well.



* * * *

Q: How does CFS research money compare to research money
for other serious debilitating illnesses that affect similar numbers
of people?


Dr. Jason: I believe that the funding is low - and we need to
figure out ways to increase the number of research proposals
that get submitted to NIH. We also need to find ways to increase
the overall amount of money that is available for ME-CFS
research. Efforts are now occurring at NIH to try to encourage a
new generation of researchers to get involved. (A CFS
Research Funding Opportunity Workshop on this topic is
planned for September 17, 2007 in the Washington, DC, area:
http://www.immunesupport.com/library/showarticle.cfm/id/8198 )



* * * *

Q: Are big pharmaceutical companies trying to develop
medications to treat or cure CFS?


Dr. Jason: Not enough time and effort has been put into this, and
we need more of these companies to get involved in testing out
literally dozens of promising products.



* * * *

Q: Dr. Jason, what would you say is the single most important
thing for a patient to do or focus on when a really bad flare-up
occurs?


Dr. Jason: Several things might be considered. First, one might
try to understand why it occurred - and that might then result in
the person finding ways of reducing this occurring in the future.
As an example, a person might work to reduce
over-expenditures of energy, and this might involve getting back
into what I call an "energy envelope." During these difficult times,
it is also important to stay connected to people you love, as
social support is critical in all phases of this illness.



* * * *

Q: What type of approach to treating CFS do you support?


Dr. Jason: The Envelope Theory, for example, recommends
that patients with ME-CFS pace their activity according to their
available energy resources. In this approach, the phrase,
"staying within the envelope," is used to designate a comfortable
range of energy expenditure, in which an individual avoids both
over-exertion and under-exertion, maintaining an optimal level of
activity over time. The Envelope Theory would not endorse
recommendations to either unilaterally increase or decrease
activity. The key is to not over-expend their energy supplies or
consistently go outside their "envelope" of available energy.


Rather than a cure, this approach focuses on improving the
ability of patients to cope with this illness, and tailored
interventions are needed for the unique needs of different
subgroups of patients.



* * * *

Q: I would like to applaud you on the Flexible Study Program at
DePaul University for individuals with CFS, FM, and other
chronic illnesses. ( http://www.snl.depaul.edu/current/chronic.asp )
I truly hope this leads the way for other universities to follow suit.
It is long needed.


Dr. Jason: You should thank Lynn Royster, PhD, who has
created this program at the School for New Learning, and I
would encourage you all to take a look at this wonderful way of
extending an education to people who are not able to get to
classes in a traditional way.


.And thank you all for such stimulating questions. I hope that I
have been able to provide some helpful ideas in the last hour.


Closing Chat Remark:

Thank you for giving us your time, Dr. Jason. Please keep up the
excellent work!


ProHealth also wishes to thank Dr. Jason - and all the patients,
researchers, and advocates who participated so generously in
this Live Chat Event. Hopefully the information exchanged here
will help advance the work to find a cause and a cure.

Tags: CFS, disabling, research, pharmaceutical, treatment, cure, CDC, Leonard Jason