Rainbow at shoreline

The Massachusetts CFIDS/ME & FM Association, a 501(c)3 founded in 1985, exists to meet the needs of patients with CFIDS (Chronic Fatigue and Immune Dysfunction Syndrome, also known as Chronic Fatigue Syndrome), ME (Myalgic Encephalomyelitis) or FM (Fibromyalgia), their families and loved ones. The Massachusetts CFIDS/ME & FM Association works to educate health-care providers and the general public regarding these severely-disabling physical illnesses. We also support patients and their families and advocate for more effective treatment and research.

Diagnostic tests

Since there is no defining diagnostic test, you need to look at a variety of tests including standard blood chemistry: i.e., CBC, electrolytes.

She looks for insulin resistance or dysregulation now (resulting from recent research on syndrome X.) This is a condition found in overweight individuals where they are producing  too much insulin. This sets in motion pro-inflammatory hormones that can increase your risk of heart disease. Weight gain is common in patients with ME/CFS/FM, along with reduced exercise tolerance. This leaves patients at a higher risk for insulin resistance. 

Common organisms that she tests for that may contribute to illnesses are:

  • Epstein-Barr virus (EBV)
  • Cytomegalovirus (CMV)
  • Chlamydia pneumonia
  • Mycoplasma
  • HHV-6
  • tick-borne diseases: Lyme, Ehrlichia, Babesia

Postural hypotension

She also looks for postural hypotension or neurally mediated hypotension, as well as low blood volume. An inexpensive office test for postural hypotension is to check blood pressure (BP) and pulse lying down and standing, every 3-5 minutes. If the BP drops more that 20 mm, then there is a problem. A more detailed diagnostic test for NMH is the tilt-table test.

Hyper-coagulation

She tests for hyper-coagulation syndrome. The lab test is the immune system activation of coagulation or ISAC panel. She finds that it is useful a blood panel. It looks at abnormal coagulation patterns i.e. excess fibrinogen, soluble fibrin. monomer excess, platelet activation markers etc. In other words, your blood is clotting too much. As a result there is increased blood viscosity (thickening) and the fibrin strands can coat viruses and bacteria to protect them , making them survive longer. The goal is to thin the blood and, reduce clotting time to normal which is done by treating with low-dose heparin (see treatment section).

Hormone tests

Thyroid—Testing Thyroid is very important. She does not rely on the standard TSH (thyroid stimulating hormone) test. It is best to look at the free T4 and free T3 thyroid levels, as well as selenium, which is a co-factor in making T-3. If selenium is low, it can interfere with thyroid production. Hypothyroidism (low thyroid), particularly borderline hypothyroidism, is often found in patients with ME/CFS/FM. Symptoms can include low body temperature, coldness, dry itchy skin, sluggishness, constipation, puffiness, loss of outer third of the eyebrow.  Dr. Hubbuch found that treatment with T4 and/or T3 has been very helpful.

Other hormones—Look for abnormal levels of estrogen, progesterone and testosterone and treat any dysregulation. Adrenal hormones can be measured in several ways. ACTH stimulation test measures adrenal reserve (the ability to increase cortisone under stressful conditions). What may prove more useful is a 24 hr. urine test for hormones that measures thyroid, adrenal and growth hormones (GH). There is also a saliva test that looks at cortisone levels four times in a day. This will show natural variations within the day. To date there has not been consistent benefit with cortisone treatment. The correct dose is still being explored. GH may be worth looking at when nothing else works, although the treatment is very costly ($10,000/yr). Precursors can be tried which are less expensive.

Heavy metal evaluation

Dr. Hubbuch screens for lead, cadmium, mercury, arsenic, tin and aluminum which are present in the environment, i.e., incinerators, lead paint and in some foods, i.e. mercury in fish.

The first step is hair test screening. If further testing is required, she recommends challenge or chelation (binding) urine testing i.e. DMSA (2,3-Dimercaptosuccinic acid or by the trade name Succimer). Garlic and chlorella are some over the counter products you can use.

Heavy metals are stored in your body and cause long term dysfunction of enzymes and antioxidants, and therefore need to be cleared from your system. Silver amalgam dental fillings are another source of contamination for some, especially if you grind your teeth. These fillings were used for a long period of time and contain 50% mercury.

Nutritional deficiencies

Dr. Hubbuch does functional testing for vitamins including homocysteine (a functional measurement of B6, B12 and folic acid) and methylmalonic acid (a functional measurement of B12). She recommends functional blood testing (intracellular micronutrient analyses) over just measuring serum blood levels. She uses Spectracell Labs (Houston TX) for many of her functional tests.

Amino acids are building blocks of protein and may need to be replaced.

Essential fatty acids (omega 3, omega 6) are measured to determine fatty acid deficits that can be replaced through diet. Good sources of omega 3 are fish, flaxseed oil and walnuts. Omega 6 is found in cooking oils.

Dr. Hubbuch looks for mineral deficiencies, especially zinc and magnesium. She looks at red blood cells, hair tests, functional testing, i.e., Metametrix urine test for organic acids as co-factors).

Antioxidants balance free radicals in your body. She tests for the following antioxidants: glutathione, Co-enzyme QIO, Vitamin C, Vitamin E, Selenium and Carotene. She does a liver detoxification test which is a functional test that measures free radicals and antioxidants. This test determines how well your detoxification system is working.

Tests for gastrointestinal (GI) problems are done to rule out parasites, yeast and bacterial imbalance. Tests include: a comprehensive digestive stool test (CDSA) for parasites, a urine test for organic acids (metabolic markers for yeast and bacteria); and an intestinal permeability test for leaky gut.

Notice about names

The Massachusetts CFIDS/ME & FM Association would like to clarify the use of the various acronyms for Chronic Fatigue Syndrome (CFS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS) and  Myalgic Encephalomyelitis (ME) on this site. When we generate our own articles on the illness, we will refer to it as ME/CFS, the term now generally used in the United States. When we are reporting on someone else’s report, we will use the term they use. The National Institutes of Health (NIH) are currently using ME/CFS. The Centers for Disease Control and Prevention (CDC) are calling the illness CFS.

Until there is consensus on a name for the illness, the Massachusetts CFIDS/ME & FM Association name will not change.