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.

Treatment approaches

Sleep 

Sleep is the most important problem to address. Improving sleep hygiene is essential (discussed in prior lectures).

Non-prescription meds recommended by Dr. Hubbuch include: valerian, 5HTP (hydroxy-tryptophan) and melatonin.

Prescription drugs include: elavil or other tricyclic meds; trazadone (desyrel), similar to tricyclics; flexeril, a muscle relaxant; neurontin, used for pain as well; and klonopin, also used for pain, brain fog and anxiety.

Ambien and sonata are two newer short-term sleep meds.

Pain control

The body centered therapies that Dr. Hubbuch recommends include: chiropractic; osteopathic; acupuncture; physical therapy; massage; and myofascial pain release. Stretching and slowly graded exercise with weights are important for conditioning and decreasing pain.

Essential fatty acids, omega 3 and omega 6, reduce inflammation (i.e. flax, fish oil). 

Removing allergic foods can be very helpful, as well as improving liver detoxification.

Magnesium relaxes muscles and is helpful for body aches and stiffness, along with malic acid.

Non-prescription medicines include ibuprofen, and non-steroidal  anti-inflammatory drugs.

Prescription pain medicines include muscle relaxants skelaxin (better for day use, less grogginess) and flexeril (nighttime use); neurontin (gabapentin) (originally an anti-seizure drug now used for pain); baclofen, for muscle and bladder spasms; elavil, a tricyclic also used for sleep; dextromethophan (found in cough meds) can extend the effectiveness of narcotics; NMDA antagonist (N-methyl-D-aspartate), i.e., ketamine; and narcotics when needed.

Fatigue

Dr. Hubbuch emphasized the importance of learning to listen to your body, pacing yourself and setting aside regular rest periods.

Non-prescription meds that she recommends include: co-enzyme Q-10, an enzyme that helps with mitochondrial abnormalities (at least 200 mg.); and NADH (nicotinamide adenine dinucleotide), another co-enzyme that helps restore mitochondrial energy production. In addition, she recommends B vitamins, especially B12 methyl cobalamin 5000mg. This is the newest form of B12 and is preferred over other types.

Prescription drugs include stimulant medications, i.e., ritalin, dexadrine, cylert, which work in some patients, but may affect the adrenal gland. Antidepressant medications can help increase energy as well as help with sleep, depression of chronic illnesses and anxiety.

Hormone Treatments for FatigueDr. Hubbuch has found that treating thyroid dysregulation is very helpful. Treatment can include: T4 and/ or T3, and selenium, since low selenium can interfere with thyroid production.

She corrects estrogen, progesterone and testosterone deficiencies. Adrenal hormone treatments have not had much success to date, and some may have serious side effects.

Possible treatments may include: cortef (adrenal steroid hormone cortisol, hydrocortisone); vitamin B5 (panothenic acid) 500mg 3x/day; Siberian ginseng and ashwaganda, an Ayurvedic herb, both act as an adaptogen (rebalancing the adrenals); licorice root; DHEA (dehydroepiandrosterone) used to replace low levels produced by adrenal hormones; and vitamin C. [In using hormone therapy for the thyroid or adrenals, many physicians, for safety reasons, are insistent on monitoring hormone levels in the blood to avoid toxicity or abnormal side-effects—Ed.]

Infections

Dr. Hubbuch uses high doses of oral vitamins, minerals, and herbs including echinacea, vitamin C and garlic to fight infections. She a1so uses intravenous (IV) vitamins minerals and the antioxidant glutathione.

For specific infections, she uses antibiotics in protocols designed for that infection i.e. chlamydia pneumonia; mycoplasma. She has not had a lot of success with antiviral meds, i.e., acyclovir, valtrex, famvir, lysine. She uses gamma globulin injections for patients who have frequent infections as a non-specific immune enhancer.

Older treatments include: kutapressin, a purified liver extract (injection only); and mistletoe (iscador iscucin) which is used in Europe to increase natural killer (NK) cells (injection only).

She is encouraged with the results of photoluminescence—photo oxidation ultraviolet light treatment. This is an old treatment that was used prior to the development of antibiotics. The technician removes 4 oz. of blood through an IV tube that runs through the machine, and then returns it to the patient's blood stream. The ultraviolet light treatment increases free radicals, which kill viruses, bacteria, parasites and yeast. The treatment shifts the oxygen-hemoglobin curve so more oxygen can get into tissues, and restore antioxidants including glutathione. [This is a controversial procedure.—Ed.]

Hyper-coagulation

If hyper-coagulation is positive, Dr. Hubbuch treats patients with low dose heparin. If there is an improvement, you can switch to the oral blood thinner, coumadin. There is also a non-prescription proteolytic enzyme, wobenzyme, that can break down fibrin deposits.

Abnormal gut function

If tests indicate abnormal gut function, Dr. Hubbuch has a four-stage approach to treatment.

  • remove bacteria, yeast and parasites (there are lots of different ways to do this)
  • replace hydrochloric acid and digestive enzymes
  • reinoculate the gut with good bacteria, lactobacillus, using probiotics (supplements containing friendly bacteria) and inulin (a polysaccharide from the Jerusalem artichoke). Inulin helps reverse or shift the immune system's T-helper cells from TH-2 to TH-1 cells.
  • repair with L-glutamine (an amino acid), essential fatty acids and fish (short-chain) peptides.

Postural hypotension

Treatments for postural hypotension include: increasing fluid intake (1 gallon/day) and adding more salt to your diet. You can also use pedialyte.

Prescription medications include: florinef, midodrine, and beta blockers. FIorinef (fludrocortisone) is a corticosteroid that acts on the kidneys to retain fluid. Midodrine (proamitine) increases cardiovascular tone and blood pressure. Beta Blockers obstruct certain nerve impulses.

Licorice paste is a non-prescription medication that is thought to stimulate the production of natural steroids and raises blood pressure.

Depression/anxiety

Non-prescription medications to treat depression include: St. John's Wort; amino acids like tyrosine, DL-phenylalanine (DLPA), and 5-hydroxytryptophan (5HTP); S-Adenosylmethionine (SAMe) (a supplement synthesized from the amino acid methionine); and B vitamins.

Prescription meds include the anti-depressant medications, and anti-anxiety medications.

Allergies/Multiple Chemical Sensitivities

The overall goal is to reduce your total allergy and chemical load. That means reducing your exposure to as many allergens and chemicals as possible. You need to understand the connections between all your allergies, i.e., pollens, food etc. The best prevention strategy is still avoidance of allergens and chemicals. You can reduce your exposure in your immediate environment by replacing personal care products, home cleaning products, etc. Be very cautious when renovating your home. Building products can be a major source of chemical exposure.

Dr. Hubbuch found allergy desensitization treatments to be helpful.

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.