A Disease Doctors Refuse to See, an article by Julie Rehmeyer in The New York Times, 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. In fact, the article explicitly states
TOO often, doctors don’t understand chronic fatigue syndrome. They don’t know how to diagnose it, and they frequently even believe that patients with the disease are just whining or suffering from psychological problems. This needs to change.
The article goes on to discuss the hallmark symptoms of chronic fatigue as well as the additional symptoms that people experience yet even with all of the evidence pointing to chronic fatigue, doctors aren’t persuaded that the patient suffers from this condition because many use objective tests to identify health issues.
But 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
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. And part of the problem for doctors when it comes to diagnosing chronic fatigue is the criteria outlined by the CDC for diagnosing CFS.
To Diagnose a Patient With Chronic Fatigue Syndrome the CDC Criteria Is That They Experience Four of the Following Symptoms for 6 Months:
- Impaired memory or concentration
- Post-exertional malaise
- Unrefreshing sleep
- Muscle pain
- Multijoint pain without swelling or redness
- Headaches of a new type or severity
- A sore throat that is recurring
- Tender neck or armpit nodes
However, both doctors and patients need to learn to live with this uncertainty and work towards improving the patient’s quality of life.
The Example We Frequently Give Is:
The patient with chronic fatigue syndrome or fibromyalgia has fallen into the “ditch of life”–their symptoms have left them virtually incapacitated so that their normal everyday life has stopped and everything revolves around their illness. Our job at the practice is to help pull you out of the ditch by giving your immune system a shove in the right direction.
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. The most alarming statistic we are seeing in our practice is the number of patients in their 20’s and 30’s who are battling to overcome these conditions. Our biggest concern is that the stresses of life today, combined with poor diet and nutrition are leaving this population vulnerable to illness when they should be in their prime years of being active.
I’ve noticed that all of my chronic fatigue 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 sufferers 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 the nourishment of the cells. If this is too low, the cells are running on empty.
How We 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 of the most important things is the patient’s story. In our practice at The Mitchell Medical Group, we are especially careful to search for other underlying diagnoses that might explain a patient’s fatigue or pain. We carefully review prior records that you bring and order tests that may have been omitted.
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 of “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’sWatson, to make an accurate medical diagnosis. But even supercomputers need a translator.
In reality, the doctor is the translator. It is only a patient, a 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 is 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 patient’s quality of life. Of course, every patient and case is different and requires different forms of treatment. Two of the main ways I have improved my patients quality of life is by using IV 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.
The treatment for chronic fatigue varies and is individualized for each patient. In some cases, recurrent infections seem to throw the patient’s immune system out of sync, and we use intramuscular gammaglobulin to restore order so the immune system isn’t vulnerable to repeat infections and inflammation. In many patients, we use intramuscular magnesium and a combination of antioxidants in an energy injection to restore the mitochondrial function. In some cases when the fatigue is severe we will also use intravenous high dose vitamin C infusions, which really can jump-start the immune system. The program we recommend also includes dietary changes and careful exercise when the patient is ready.
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.
In our practice, we are prepared to do whatever we can to restore your health.
Dr. Dean Mitchell M.D.
Mitchell Medical Group in NYC and Long Island
About the Author – Dr. Dean Mitchell, M.D.
Dr. Dean Mitchell, M.D. is a Board Certified Allergist and Immunologist based out of NYC. He graduated from the Sackler School of Medicine and completed training at the Robert Cooke Allergy Institute in New York City. He is also a Clinical Assistant Professor at Touro College of Osteopathic Medicine, a fellow of the American Academy of Allergy, Asthma, and Immunology, and the author of Dr. Dean Mitchell’s Allergy and Asthma Solution: The Ultimate Program for Reversing Your Symptoms One Drop at a Time. Dr. Dean Mitchell, M.D. has also been featured in The New York Times, The Huffington Post, Fitness Magazine, Dr. Oz and News NY 1. Dr. Mitchell also hosts the podcast The Smartest Doctor in the Room – a combination of a lively, personal and in-depth interview with top healthcare specialists.
Rehmeyer, Julie. “A Disease Doctors Refuse to See.” The New York Times, Opinion, February 25, 2015. https://www.nytimes.com/2015/02/25/opinion/understanding-chronic-fatigue.html
CDC Diagnostic Criteria for Chronic Fatigue. https://www.cdc.gov/me-cfs/healthcare-providers/diagnosis/iom-2015-diagnostic-criteria.html