The full name is “Myalgic Encephalomyelitis”. “Myalgic” is a medical term for chronically painful muscles. “Encephalomyelitis” means your brain, spinal cord and nerves are inflamed, cause unknown, although the current thinking is the trigger is some sort of phenomenon occurring after a viral infection (‘mono’, ‘flu’, COVID). The result is “chronic fatigue”. You are tired all the time, and you can’t think clearly.
ME-CFS severity ranges from fairly mild but enough to interfere with your life. You can continue working but it’s not easy. The severe cases are so very severe you live a bed-chair existence. You feel faint rising from bed.
From your ME-CFS diagnosis to treatment, you will meet several kinds of doctors, some will give you useful suggestions, others you realize were useless. Ultimately, you will likely need a combination of prescription medication, mostly “off-label” meaning never tested for ME-CFS but found by doctors who work with ME-CFS patients to be helpful, plus a variety of nutritional supplements, dietary recommendations and sometimes intravenous therapies.
Let’s say you’ve had most of the symptoms of ME-CFS for months. You’ve read a reasonable amount of stuff about it online and you yourself think ME-CFS is a possibility.
Three reasons to change doctors:
#1 Your doctor tells you that everyone’s tired. She’s tired herself. You should get more rest
#2 You’re told your tests are good and you spend too much time on the internet.
#3 They say, “There’s really no such thing as Chronic Fatigue Syndrome. It’s a ‘catch-all’ term for anyone who says she’s tired all the time with negative tests.”
The three “official” specialists who diagnose and treat ME-CFS are general internists, rheumatologists and neurologists. An increasing number of family and nurse practitioners are becoming certified in Functional Medicine whose diagnostic tests are shedding some light on the causes of the ‘fatigue’ of chronic fatigue.
Each of the specialists will offer their individual assortment of ME-CFS tests. Keep in mind that if something is “found”, for example, chronic Lyme by your internist, an autoimmune disease by your rheumatologist, a sleep disorder by your neurologist, then you didn’t have ME-CFS in the first place because there is no diagnostic test for this condition. Doctors use the term “diagnosis by exclusion” for ME-CFS and similar conditions that are quite real and need treatment, even though there are no tests to confirm them. Fibromyalgia is another of these. Taking a Tylenol for a tension headache is an example of treating a symptom without diagnostic testing.
However (and this is an important “however”), any of your physicians will likely offer you a prescription drug simply to improve your overall functioning and to help with your symptoms.
START LOW AND GO SLOW
The byword among physicians who treat a lot of ME-CFS patients is ‘start low and go slow’, explaining along the way what each medication does, what the side effects are, and not to expect miracles. This link lists the medication strategies for ME-CFS. I always ask our patients to observe for any improvement (or lack thereof).
Medications generally include:
- Antidepressants (for sleep, mood and pain: more than 50% of patients report definite improvement);
- Stimulants (ex. armodanifil) for energy;
- Muscle relaxants (cyclobenzaprine);
- Orthostatic intolerance med (midodrine, florinef).
Along the way, further testing for common but often overlooked causes of chronic fatigue might reveal Mast Cell Activation Syndrome, mold biotoxin illness (“chronic inflammatory response syndrome ‘CIRS’), adrenal fatigue, subclinical hypothyroidism, toxic metals, candida and parasites.
Read each link for further details.
Understanding that finding and treating any of these moves the needle, so to speak, toward an improvement away from chronic tiredness, but if everything does stay exactly the same (and sadly, the needle might just be stuck), it only confirms your original ME-CFS diagnosis.
All however is not lost.
Low dose naltrexone (available by prescription from compounding pharmacies) has been shown to be useful for ME-CFS; peptides Thymosin Alpha-1 and BPC-157 build the immune system; likely the peptide Cerebrolysin (intravenous) will eventually be available for ‘brain fog’ as well as early Alzheimer’s Disease.
Studies from both the NIH and a clinical trial in Italy have shown that ozone infusions, in which a small amount of your blood is infused with ozone (O3) and returned to you, has been shown to improve energy among ME-CFS patients. You’d start with a series of ten infusions then maintain monthly or twice a month.
If chronic fatigue or long COVID is an issue in your life, call and schedule with a WholeHealth Chicago practitioner.
Be well,
David Edelberg, MD
I have a family member that was diagnosed with sleep apnea so I don’t think that should be over looked in chronic fatigue.
Carol Mavraganis