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The Massachusetts ME/CFS & FM Association, a 501(c)3 founded in 1985, exists to meet the needs of patients with ME (Myalgic Encephalomyelitis), CFS (Chronic Fatigue Syndrome) or FM (Fibromyalgia), their families and loved ones. The Massachusetts ME/CFS & 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.

Research articles

Nutrition and Exercise

Important notice: Please note that the information on Treatment provided here has been compiled by patients for patients, and represents a summary of what patients may have experienced in working with their individual health care providers.  The information in this website is not a substitute for professional medical advice.  Please consult with your physician or other healthcare provider in matters pertaining to your medical care.  See our full Medical Disclaimer.

Health Care Providers: Please see the information on pp. 20-22 and pp. 25-26 of ME/CFS: A Primer for Clinical Practitioners.


Nutrition

No specific diet has been devised for people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) or Fibromyalgia (FM), but there are many helpful tips and suggestions. Many patients report an increased sensitivity to foods or additives in food items. Changes have been noted in metabolism, more specifically in how food is digested and converted into energy. Many patients also notice an increased craving for sweets and some may experience symptoms of reactive hypoglycemia (low blood sugar). Excessive intake of carbohydrates may lead to "insulin resistance" which is a separate, serious health problem and should receive proper medical intervention. The goal is for people to make healthier choices in the foods they consume to fuel their bodies and keep them running as well as possible—so, improved nutrition is more of a lifestyle change. 

  • General recommendations are to consume less simple sugars and carbohydrates for the above reasons and to remember that brief, increased "energy" will be quickly reversed.
  • Too much sugar can promote yeast overgrowth (candiasis) as well as provide a suitable breeding ground for many types of bacteria.
  • Too much protein can also be harmful, as this makes the liver and kidneys work harder.
  • Increase essential fatty acids, especially omega-3 rich foods such as flaxseed, walnuts, winter squash, green leafy vegetables, and cold-water fish (like salmon, tuna, or halibut).
  • Reduce or avoid trans-fatty foods such as fried foods, many margarines (especially stick margarinethe worst type), dressings and dips, many baked goods (cakes with icing, creamy fillings and donuts) and snacks (chips and many crackers).
  • Keep meals simple and freshthis helps to avoid food additives, flavor enhancers and artificial coloring agents. Don't over-season dishes and try to eat fresh produce (though in what conditionsthe  produce has been grown in is another complicated issue in itself).
  • Drink enough water so not to dehydrate, but some ME/CFS and FM clinicians have found some patients' bodies won't retain enough of it due to a glitch in an anti-diuretic hormone. Sometimes sodium or certain medications are prescribed— consult your doctor on this. 
  • Consider finding and working with registered dietitians or healthcare practitioners to create a healthy program for specific needs and problems.
  • Consider undergoing allergy testing to make sure you have no food allergies. Symptoms of food allergies do not have to be digestive symptoms or rashes. A wide variety of symptoms, including swollen Eustachean tubes, irritated eyes and neurocognitive problems can be the result of food allergies.

Exercise

Similarly, the goal is to incorporate some level of routine exercise to help maintain general muscle tone, strength and mobility, which goes hand-in-hand with more mindful eating habits. But it is very important to stay within your "energy envelope." Patients with FM but not ME/CFS tend to do reasonably well with an exercise program that approaches that for a healthy person. Patients with ME/CFS tend to relapse (often badly) by trying to follow a healthy person's exercise program.

  • Start out slowly with very gentle types of exercise, increase these in small increments (even a few minutes at time) and rest in between—perhaps start with walking.
  • Most useful types of exercise are those which can improve range of motion, weight bearing, strengthening, stretching, and for ME/CFS and FM patients, in particular, it is generally not recommended to increase heart rate much over 60% of maximum rate.
  • Paying close attention to ergonomics and good body posture is helpful.
  • Exercising in a warm water pool can be reasonably helpful for many, but those with ME/CFS might have problems (including taking hot showers and baths) because the heat could up-regulate the immune system and release cytokines (which is what causes that flu-like feeling). There might also be increased problems with neurally mediated hypotension from this type of exercise and hot showers or baths. Usually, people would be working with a physical therapist or trainer to create a suitable program for their condition. It is extremely important to work with a physical therapist or trainer who understands ME/CFS or FM, since many patients have become more ill after physical therapy by being required to do too much. Joining a standard aquatic program for arthritis might be too much, for instance. Water pressure against the body in itself is thought to help by relieving the pooling of blood in lower limbs.

More options and practices to consider are described under Alternative Therapies.


More resources

A Minimal and Achievable Exercise Program

Complementary and Mainstream Treatment Approaches by Dr. Jeanne Hubbuch

Exercise and CFIDS

Mitochondrial Dysfunction, Post-Exertional Malaise and ME/CFS

Rest, Pacing and Stress; What Every ME/CFS Patient Should Know

Review of Nutritional Supplements Used in ME/CFS/FM

Supplements 

A Minimal and Achievable Exercise Program

A major problem for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) or fibromyalgia (FM) patients is the loss of muscle tone due to inactivity.  The body's muscles help to control the tone of the blood vessels and help regulate blood pressure. For this reason and many others, it is very important to take care of the body's muscles.

ME/CFS patients especially need to find ways to do even the most minimal exercise. Here is the approach recommended by Dr. Nancy Klimas. To start, determine how many minutes you have during a good part of your day to do minimal movement before you start to feel tired. This is the amount of time you will exercise at the beginning. There are two types of exercise: aerobic and strengthening.

Aerobic exercise

Aerobic exercise consists of body movement that increases the heart rate, such as swimming, bicycling, even walking.

Dr. Klimas highly recommends swimming since the water compresses vascular space, thereby encouraging circulation throughout the body. Swimming also cools and prevents overheating.

Your goal is to prevent deconditioning. Start with your minimal, fixed amount of time and do the same exercise every day for two weeks. Don't try to advance the amount of time or push yourself for the first 2 weeks.

After two weeks, add 7 minutes of the exercise at a different time of day. After another two weeks or so, you can begin to exercise a third time a day for another 7 minutes.

When you feel absolutely ready, you can increase the number of minutes in each period, but be flexible. If you're having a relapse, don't make yourself worse by forcing yourself to stick to your schedule. But as soon as you feel better, get back to your program. By sticking with it, over time, you will improve physically.

In six months, you may be able to exercise moderately for 15 minutes, two to three times per day. For many ME/CFS patients this is a rational goal that can be achieved without undue relapsing.

[N.B. Dr. Charles Lapp suggests doing two to five minutes of exercise followed by five minutes of rest instead. His suggestion might be more realistic, given the problems with mitochondrial dysfunction in ME/CFS. See "Mitochondrial Dysfunction, Post-exertional Malaise and ME/CFS" and Dr. Lapp's Exercise Suggestions .—Ed.]

Strengthening with isometric or weightlifting exercise

A major problem for ME/CFS patients is the loss of muscle tone due to inactivity and muscle catabolism from the cytokines involved in an over-activated immune system, especially when fever is present. Strengthening exercises are a very good way to maintain tone, and these exercises are not as difficult for the patient since they require less blood flow and oxygenation.

Moreover, the exercises should only be done every other day.

To start take a one-pound can of soup and do repetitions (biceps curls) with one hand until your arm is a little tired, then stop. Remember how many repetitions you did. Next, move on to the next muscle group and do the same thing.

Rest the next day, since the rest allows the muscle to strengthen. For the first week don't change the number of repetitions. You will need a book of weight exercises to teach you how to progress. Dr. Klimas recommends the FM Survivors Guide by Dr. Mark Pellegrino that outlines an excellent exercise program.

[2015 Note: Recent research conducted at Marquette University indicates that more strength is developed in people over 40 if the weightlifting exercise is done slowly,  holding the weight in place a few seconds, with fewer repetitions.]

Checklist of ME/CFS Symptoms

1. Most Common Symptoms of ME/CFS

  • Exhaustion, made worse by physical exercise (100%)
  • Low-grade fever in early stages (60-95%)
  • Recurrent flu-like illness (75%)
  • Frequent pharyngitis (sore throats) (50-75%)
  • Joint and muscle pain (65%)
  • Severe muscle weakness (40-70%)
  • Stiffness (50-60%)
  • Post-exertional fatigue & flu-like symptoms (50-60%)
  • Multiple sensitivities to medicines,  foods, and chemicals (40-60%)
  • Severe nasal & other allergies (often with worsening of previous mild allergies) (40-60%)
  • Frequently recurring, difficult to treat respiratory infections (40-60%)
  • Dyspnea (labored breathing or hunger for air) on exertion
  • Painful lymph nodes (especially on neck and under arms) (30-40%)

2. Neurological Symptoms

  • Sleep disorders & unrefreshing sleep (50-90%)
  • Headaches (35-85%)
  • Visual blurring (50-60%)
  • Intolerance of bright lights
  • Parasthesias (numbness or tingling feelings) (30-50%)
  • Dizziness/ Lightheadedness (30-50%)
  • Ringing in the ears
  • Impaired cognition (50-85%)
    • Attentional difficulties
    • Calculation difficulties
    • Memory disturbance
    • Spatial disorientation
    • Saying the wrong word

3. Other Symptoms

  • Worsening of premenstrual symptoms (70% of women)
  • Nocturia (excessive urination during the night) (50-60%)
  • Tachycardia (abnormal rapid heart action) (40-50%)
  • Chest pain (25-40%)
  • Cough (30-40%)
  • Weight gain (50-70%)
  • Nausea, especially in earlier stages (50-60%)
  • Diarrhea, intestinal gas or irritable bowel (50%)
  • Intolerance of alcohol
  • Night sweats (30-50%)
  • Dry eyes (30-40%)
  • Dry mouth (30-40%)
  • Rash (30-40%)
  • Frequent cancer sores (30-40%)
  • Herpes simplex or shingles (20%)
  • Symptoms worsened by extremes in temperature

4. Less Common Symptoms

  • Mitral valve prolapse
  • Paralysis
  • Seizures
  • Blackouts

5. Psychological symptoms

  • Depression (reactive or secondary depression)
  • Anxiety (including panic attacks and personality changes)
  • Emotional lability (mood swings)
  • Psychosis

The above information was compiled by Massachusetts CFIDS/ME & FM Association from data by Drs. Paul R. Cheney,  Jay A. Goldstein, Anthony L. Komaroff, Charles Lapp, and Daniel Peterson.

 

Subcategories

Notice about names

The Massachusetts ME/CFS & 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) and other federal agencies, including the CDC, are currently using ME/CFS. 

Massachusetts ME/CFS & FM Association changed its name in July, 2018, to reflect this consensus.