Chronic Fatigue Syndrome: A Disease Doctors Must Recognize

A Disease Doctors Refuse to See, describes how patients with Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) feel they are treated as second class patients because their diagnosis has no specific test or treatment. Therefore, this disease is not recognized by the medical community.

Chronic Fatigue Immune Dysfunction Syndrome is a very real and complicated disease. As a doctor whose door is open to any CFIDS patient, I want to share my thoughts, observations and experience with this illness.

DOCTORS DON’T LIKE UNCERTAINTY chronic fatigue treatment

I completely understand Ms. Rehmeyer’s frustration. CFIDS is a mysterious disease and many doctors are uncomfortable with medical mysteries or uncertainty.

Doctors like a clear-cut diagnosis. They are uneasy when their patient has an illness that does not have a specific test to detect the problem. But, CFIDS is a complex and mysterious condition with no clear-cut diagnosis, and no single cure.

However, both doctors and patients need to learn to live with this uncertainty, and work towards improving the patient’s quality of life.

CFIDS PATIENTS HAVE TWO THINGS IN COMMON

A Life-Changing Event

I see at least a dozen Chronic Fatigue Immune Dysfunction Syndrome patients a month. I’ve noticed that all of these patients have 2 things in common. First, something dramatic tends to have happened in the patient’s life that triggered their condition and caused their energy levels to start plummeting.

The key is to find out what this constant fatigue trigger was, so you can get to the root of the problem. This takes time, and requires a doctor who is willing to go deeper to put the puzzle together.

I have seen cases where an apparent infection triggered an immune response in the patient that left them severely fatigued 24/7. Sometimes it is Epstein-Barr, but in most cases it is an unknown virus.

Anyone and any doctor can relate to feeling exhausted after, for example, a bad viral infection. However, doctors are unwilling to accept that an infection can leave a person permanently fatigued —unless of course the doctor has a specific blood test proving the infection and removing medical uncertainty.

Women—And Low Blood Pressure

The second striking observation is that many of these CFIDS suffers tend to be women who have low blood pressure.

Their low blood pressure means they become easily exhausted with normally routine exertion. This is very important! Typically in medicine we tend to worry about high blood pressure or hypertension, but low blood pressure comes with its own set of problems.

When a patient has low blood pressure, they don’t have much reserve if they get sick. I’d compare it to the water pressure in your shower. If the water company is fixing a pipe in your area, then your shower just drizzles out a few sprinkles of water. Similarly, our blood pressure needs to perfuse all our organs with blood for nourishment of the cells. If this is too low, the cells are running on empty.

HOW I DIAGNOSE CFIDS

Today, like all doctors, I have no specific test to diagnose my CFIDS patients. I have to work with what I have and one the most important things is the patient’s story.

Their story is key and tends to hold the answers to the problem. I always listen closely to what the patient has to say because I don’t want to miss any important clues they may give me. A seemingly unimportant detail could be the one that helps me detect the root of the problem.

When a patient comes to me, the first thing I do is rule out the possibility that their fatigue is due to a different and (possibly) treatable disease. Examples include mononucleosis, Addison’s disease or Sjögren’s syndrome, which can all be treated with other medications.

Once I rule these diseases out, I focus on the details my patients tell me. For example, when they started to feel constant fatigue, what had been happening in their life around that time, or how they were living their lives.

Some physicians may think CFIDS is a fictitious disease, but I know better! There is a lot “detective work” and experimentation involved, but my many years of experience in the field also helps with diagnosis and treatment.

When I teach my medical students, I often joke that the tech world may very well come up with supercomputers, like IBM’s Watson, to make an accurate medical diagnosis. But even supercomputers need a translator.

In reality, the doctor is the translator. It is only a patient, seasoned expert that can listen to a patient’s mundane symptoms and story, and synthesize them into a diagnosis.

IS CFIDS A MITOCHONDRIAL DISEASE?

The technical medical thinking is that CFIDS is a mitochondrial disease . Mitochondrial diseases are a group of disorders caused by dysfunctional mitochondria (the organelles that generate energy for the cell).

Mitochondria have been called the “battery of the cell”, because it is in these cells that Adenosine Triphosphate (ATP) is produced and sent out for use. ATP has been called the “monetary currency” of the body. You can only spend (use) as much energy as the amount of ATP in your body. Though the study of Mitochondrial diseases are not a medical specialty, there may be a connection with CFIDS.

HOW I TREAT PATIENTS

As there is no cure for CFIDS, my ultimate goal is to improve my patients quality of life. Of course, every patient and case is different, and requires different forms of treatment. 2 of the main ways I have improved my patients quality of life is by using vitamin therapy, and by encouraging a change in lifestyle.

Lifestyle changes can dramatically improve a patient’s quality of life. For example, one of my patients was a nurse who suffered from severe fatigue. She worked 4 consecutive 12-hour days in the OR. After her 4 day shifts she would be unable to get out of bed for 2 weeks. I suggested she make some lifestyle changes and try to work with a more flexible schedule. My recommendation was to only work 2, rather than 4, days in a row. This led to a huge improvement in her energy levels.

Life Doesn’t Stop!

The simple fact is that you can’t shut down life because of this disease. You have to respect it and adjust your life to live with it. Making some adjustments will lead to an increase in your quality of life.

The key to starting this process is finding a doctor that recognizes that CFIDS is a real illness, accepts the uncertainty that surrounds it, and is willing to take the time to piece together the elements that are causing your severe fatigue.

My Advice To The Writer

On a final note, I can palpably sense Ms. Rehmeyer’s frustration with the medical community regarding her own illness and the labeling of CFIDS as a fictitious illness. My advice to her is to seek out a physician who is willing to listen carefully to her story (she mentioned mold seems to worsen her symptoms) and keep writing about this disease, until one day she is writing about the cure.

- Dr. Dean Mitchell

Categories: Chronic Fatigue

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