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.
- Last Updated: 20 November 2015 20 November 2015
Symptoms and diagnosis
Dr. Hubbuch emphasized the importance of looking at the whole person. She believes in developing a strong partnership with her patients as they work toward their goal of improving their quality of life. Her patient centered approach focuses not on the disease, but the person with the illness. The approach of functional medicine is the improvement of physical, cognitive and emotional functioning of individuals. The goal is restoration or enhancement of health, not just suppression of disease or treatment of symptoms.
Symptoms for ME/CFS include: severe bone-weary fatigue; non-restorative and disrupted sleep; flu-like symptoms i.e. sore throat, tender swollen lymph nodes, low grade fever; headache of a new type, pattern or severity; myalgias or aching heavy limbs; post-exertional malaise lasting greater than 24 hours; multi-joint pain without swelling or redness; and cognitive dysfunction. Associated findings include: postural hypotension (low blood pressure) and low blood volume; irritable-bowel syndrome (IBS) (with yeast overgrowth, parasites, bacterial imbalance); hormonal imbalance (with low adrenal, low DHEA, low functional thyroid tests); allergy (intolerances to medicines, foods; inhalants and chemicals that were previously well tolerated).
Diagnostic criteria for fibromyalgia (FM) include: positive tender point exam (11 of 18 positive points for tenderness (soft tissues, muscles, ligaments, tendons); generalized pain (deep, aching, throbbing, shooting, burning, stiffness); fatigue (medium to severe, totally drained, weary arms and legs, feeling heavy like concrete); cognitive impairments (brain fog); and sleep problems where Stage Four sleep (deep sleep) is interrupted by awake-like activity. Other sleep disorders that can be associated with FM are: sleep apnea (temporary, absence of breathing during sleep); myoclonus.(night time jerking of arms and legs); restless leg syndrome; and teeth grinding.
Dr. Hubbuch thinks that ME/CFS and FM overlap very closely, and are likely part of the same illness. She feels that multiple chemical sensitivity (MCS) is also on this continuum. Other associated syndromes include: irritable bowel syndrome (alternating constipation and diarrhea, abdominal pain, gas, nausea); chronic headaches—recurrent migraines or tension-type; temporomandibular joint pain (jaw pain); interstitial cystitis (bladder inflammation); vulvitis (inflammation of vulva); and menstrual irregularities.
MCS can include sensitivities to odors, perfumes, detergents, car exhaust, paints, new rugs and clothes, cigarette smoke, etc, and sensitivities to medications, foods, molds, other inhalants. The onset of MCS can be either high-level toxic exposures (volatile chemicals, solvents, pesticides, smoke, auto exhaust) or prolonged exposure to low-level toxicity over months to years.
Symptoms are triggered by these exposures and spread to multiple other, previously tolerated substances. Multiple organ systems are affected triggering a broad range of symptoms, i.e., skin rash, itching, shortness of breath (SOB), cough, myalgias, IBS, neurocognitive symptoms etc. Symptoms recur reproductively from low-level exposure to multiple unrelated chemicals.
Dr. Hubbuch feels that these are multifactoral illnesses with no single cause. Some of the likely causes or initiating events are infections (viral or bacterial) that are either ongoing or cause dysregulation with long-term effects.
FM can often begin by trauma, car accidents, falls, etc. MCS could develop first, then patients develop infections, etc. and go on to develop ME/CFS and FM symptoms. The conditions are very closely intertwined. Not only can the symptom patterns vary but the onset patterns vary as well.
In many, the typical, previously healthy person has a sudden viral syndrome with fever, sore throat etc. that never goes away. For others, the onset is headache, myalgias, respiratory symptoms, GI symptoms (nausea, vomiting, diarrhea) etc. There is often a prolonged illness with no full recovery, as well as recurrent cycles of acute exacerbations. Cognitive functioning continues to decline over the prolonged course of the illness, as does quality of sleep.
These are dominant symptoms that worsen over time. Symptoms also worsen after exertion. In a smaller group of patients there is a gradual onset of fatigue with or without frequent infections or body pain.
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.