Vincent Van Gogh’s Doctor Gachet, 1890

I have put this section together to provide information for doctors and health care providers. THERE IS SOME INFORMATION SPECIFICALLY WRITTEN FOR THE USE OF MEDICAL PRACTITIONERS TO HELP THEM UNDERSTAND CHRONIC FATIGUE SYNDROME, DIAGNOSIS AND TREATMENT, this information has been written by doctors, for doctors….and is put out by the CDC. Also a short video from the CDC. This section will continue to be updated, as I come across additional information…….so check back.

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Ten Discoveries About The Biology of Chronic Fatigue Syndrome

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PRINT THIS 12 PAGE INFORMATIVE REPORT FROM THE CDC FOR YOUR MEDICAL PROVIDER:

This is the most important documentation that I currently have for you to print out and bring to your doctor — TOOL-KIT OF IMPORTANT INFORMATION FOR HEALTH CARE PROVIDERS

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CONTINUING EDUCATION

Health care professionals can earn free continuing education credits through the CDC’s accredited course on chronic fatigue syndrome (CFS). All courses contain evidence-based information designed to give participants an understanding of CFS fundamentals. The course(s) deliver top-quality information in easy to read formats.

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THE CFS 2006 AWARENESS CAMPAIGN BY THE CDC

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NCFSFA INFORMATION OF MEDICAL PROFESSIONALS

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CHRONIC NEUROIMMUNE DISEASES

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CHRONIC FATIGUE SYNDROME AND DEPRESSION — WHAT CAME FIRST?

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This is the most important documentation that I currently have for you to print out and bring to your doctor — TOOL-KIT OF IMPORTANT INFORMATION FOR HEALTH CARE PROVIDERS

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The inability of a doctor to correctly diagnose a multisystemic disease is evidence of a deficiency of the doctor rather than a patient’s lack of cooperation.

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No tests can yet detect chronic fatigue syndrome, which is probably why the medical establishment took two decades to recognize it as a serious ailment.

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A Word About Depression

“There is one piece of good news in this list of five theories, and that’s the fact that you don’t see psychiatric disease there. That theory has largely fallen out of favor. Psychiatric illness is serious and devastating, but there” very effective treatment for it; by contrast, there is still no good treatment for chronic fatigue syndrome.

“Having said that, I want to emphasize that, at some point in their disease, many CFIDS patients <will> become depressed. At least 60 percent of my patients have had periods of severe depression. This can take the form of despair that is truly life-threatening, and there may come a time for any individual patient when there is a role for counseling in their lives. I would hope everyone would be open to this when feelings of despair become overwhelming, and recognize that seeking help does not mean their disease is primarily psychological, but instead that counseling can play a valuable role in coping with any chronic physical illness.” — see more from this article

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Is CFS psychological or physical? This seemed such a stupid question that I never bothered to consider it. I estimate I must have now seen more than 4,000 patients with Chronic Fatigue Syndrome, and it is clear CFS is primarily a physical disorder.

It is only when patients have been ill for several months and been told by their physicians that nothing is wrong that they get secondary psychological problems. The only place where CFS does not exist is in the brains of small-minded doctors. — READ COMPLETE ARTICLE

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STUDY REGARDING FIBROMYAGIA

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Important Information About Exercise and Chronic Fatigue Syndrome…

The following are some ideas about how to help your CFS patients discover how they can best improve their physical conditioning, given their particular level or type of illness.

Don’t Call It “Exercise”

We all, patients and providers, have inflated perceptions about what the word exercise means. Instead of asking about exercise, try: “What are you able to do

…to keep your muscles from becoming weak?

…to keep your body moving?

…to stay strong and flexible?

…to work on physical conditioning?”

Discuss Physical Conditioning Activities in Every Visit

Just as I review medications, current symptoms and level of function, I include a question about efforts to become better physically conditioned. Everything counts: walking up and down stairs in the home, sitting on the grass or a gel pillow and pulling a few weeds, walking the dog. Point out and commend what is being done, and think of ways to gradually push toward, but not over, the threshold and discover its nature. Confirm with patients the activities they have discovered helpful (i.e., stretching helps reduce pain and stiffness; being stronger makes getting around easier).

Separate Physical Conditioning into Approachable Components

1. Stretching. Stretching is well tolerated and complemented by relaxation and breathing exercises. Start with seated or supine stretching activities, and sustain a regimen for several weeks before moving to standing activities or strength conditioning. Specific instructions are helpful and usually necessary.

2. Strength training. Progress gradually from stretching to strengthening activities. Use very low weights, light stretch bands or no equipment at all, just body weight. Strength training should initially be limited to 30-60 seconds with rest periods between, and a maximum of 3-5 intervals per session. Do not increase weight/resistance much or do prolonged repetitions. Specific instructions are imperative.

3. Cardiovascular conditioning. Aerobic upright activity is usually the least well tolerated, especially if prolonged or intense, so if done, it must be done with care. It should be brief and low intensity, such as walking to the corner and back rather than attempting to go all the way around the block. Start with only a slight increment more than current daily activities demand.

Start with Small Efforts, Increase Slowly, and Find a Sustainable but Flexible Regimen

Physical conditioning efforts should approximate an intensity and duration that will cause no post-exertional malaise symptoms the day following the activity. “No pain, no pain,” is advised by Namita Gandhi, an exercise physiologist in Oregon with both personal and professional expertise in Fibromyalgia movement therapy. All fatigue, pain or cognitive symptoms should be back to baseline after a good night of sleep.

The regimen should not be increased until it can clearly be sustained for weeks without consequence. Then it may be increased a small increment in duration or intensity, and observed for tolerance another 1-2 weeks, etc.

There is nothing wrong with finding a tolerable, variable or constant level to maintain without graded increase, as that is the inevitable end.

Allow Recovery Time

Rest between short intervals of exercise. Take at least one rest day between conditioning days. Allow more time when stressed or in a flare of symptoms. Give whatever physiologic injury may be present plenty of time to resolve before attempting further exercise.

Be Cautious About Upright/Standing, Intense or Prolonged Activities

1. Upright/standing: Since people with CFS may have autonomic dysfunction, it makes sense (and works) to engage primarily in activities that minimize orthostatic intolerance (OI). OI is a general term that encompasses a variety of manifestations, including Neurally Mediated Hypotension (NMH) and Postural Orthostatic Tachycardia Syndrome (POTS).

Try to do most physical conditioning activities lying down, seated or in water. If sensitive to orthostatic stress, choose Yoga, Pilates, recumbent cycling or pool therapies rather than standing for Tai Chi, walking on a treadmill, or attempting to play soccer. Water offers a number of theoretical advantages in the setting of OI. Swimming in a horizontal position negates OI. Standing or walking in deeper water creates a hydrostatic pressure gradient, un-weights the joints and spine, and provides uniform light resistance to all movement. Cooler water may contribute positively to peripheral vasoconstriction, thus minimizing OI. Warmer water is more soothing for arthralgia, myalgia and stiffness.

Avoid becoming overheated and volume depleted. Hot tubs, hot showers, sitting too long in a hot car cause vasodilation and can result in marked OI symptoms, manifest silently as a drop in blood pressure or dramatically as a pounding or racing pulse. Frank syncope (fainting) can occur, but getting overheated usually just lowers the threshold, prevents further activity, and can result in severe post-exertional malaise (exhaustion, headaches, cognitive decline, achiness and disturbed sleep).

Volume loading can be strategically timed to improve exercise tolerance in the face of OI. It is effective to “chug or guzzle” oral fluids in anticipation of upright activity. A 500-600 cc (medium size bottled water) bolus begins to raise blood pressure in 15 minutes, peaks in 30 minutes, and the effect is gone in 60 minutes (Shannon).

The peripheral alpha agonist, midodrine (a 10 mg dosage in most people), can compliment fluid loading. Its acts fairly quickly and the effect abruptly wanes within 4 hours due to its short half life. For severe POTS, beta blockade may also be helpful.

2. Intense: Exercising too vigorously is the most common mistake made by those who fail a trial of physical conditioning. Rapidly or dramatically exceeding the threshold results in more illness symptoms, overall a very negative experience. Assume severe underlying deconditioning and co-morbid pathology are present. I tell my patients who hire a personal trainer to begin with a program designed for “an 80 year old with a heart condition.”

Staci Stevens, MS, an experienced CFS exercise physiologist in California, instructs her patients to wear a heart rate monitor with an alarm to notify them when the heart rate has climbed to a predetermined level. She measures a CFS patient’s anaerobic threshold objectively during graded cardiopulmonary testing, notes their heart rate at the anaerobic threshold, and then uses that heart rate value to estimate the anaerobic threshold during physical activity. It is typically somewhere between 90-110. (Linda’s was 80!)

Staci counsels patients not to exceed that heart rate during physical activity. When the alarm goes off, the patient stops the activity and sits down to rest. Whether avoiding a defect in oxidative metabolism, an escalation of orthostatic hypotension, or some other mechanism, this may be one tangible way of staying below the threshold of relapse and avoiding post-exertional malaise.

3. Prolonged: Even light exercise can exceed the threshold if pursued too long. Set time limits and gradually increase them if sustainable without relapse. Respect the threshold. If increases in duration of exercise are not well tolerated, continue only shorter, less intense, sustainable regimens. Limit the time of any sustained action initially to 30-60 seconds and the whole activity to 5 minutes.

Dr. Charles Lapp, MD, in North Carolina, has shown that five minutes three times during the day are better tolerated than a 15 minute block of activity, yet the results in conditioning are equivalent. It is actually better than equal, because exceeding the threshold will inevitably cause a discouraging setback and an understandable desire to abandon all efforts to continue.

Be Consistent