Since the cause of ME/CFS remains a mystery, most treatment is aimed at relieving symptoms. Types of medications that may be prescribed include:
- Sleep initiators and sustainers
- Antidepressants (SSRI, SNRI or tricyclic) – for depression, sleep and pain
- Analgesics (NSAID, Cox II inhibitor, opioid, topical) – for pain
- Stimulants – for energy improvement and mental acuity
- Muscle relaxants – for pain and sleep
- Anticonvulsants – for pain, sleep and mood stabilization
- Vasopressors (blood vessel constrictors/blood pressure raisers) – for orthostatic intolerance
- Beta Blockers – for orthostatic intolerance
Researchers believe that chronic infection is a problem for at least some ME/CFS patients. Clinical trials are currently being conducted on a number of antiviral and antibacterial medications for the treatment of ME/CFS.
People with ME/CFS tend to be highly sensitive to medications. Therefore, dosages are usually started at very low levels and gradually adjusted to a level that is both well-tolerated and therapeutic.
Every patient is different. What works for one may not work for another. Physicians and patients need to work together to discover which drug, or combination of drugs, works best.
Many ME/CFS patients take a variety of supplements and herbs along with, or sometimes instead of, pharmaceutical drugs. Because ME/CFS patients are so often sensitive to medications, supplements and herbs can provide a healthy, helpful alternative.
Some of the supplements used for various ME/CFS symptoms include:
- Sleep – melatonin, valerian root, calcium/magnesium, GABA, 5-HTP
- Energy – B12, DHEA, NADH, magnesium malate, D-ribose, CoQ10
- Pain – Vitamin D, magnesium malate, white willow bark, bromelain, thiamin
- Memory – DMAE, Ginkgo Biloba, vinpocetine, Methylcobalamin (a form of B12)
- Immune System Support – transfer factor, olive leaf extract, AHCC, beta glucan, colostrum.
A supplement combo reported to be effective in treating ME/CFS is known as the Myers’ Cocktail. It is an intravenous pharmaceutical strength nutritional therapy, usually consisting of B vitamins, magnesium, vitamin C and calcium, that is administered by a physician.
Bodywork is a term used to describe alternative/complementary therapies involving touch, physical manipulation or energetic work. There are several types of bodywork that may be used to treat ME/CFS. Like any treatment for this illness, effectiveness varies with the individual. While some report great success with a particular method, others say that same method caused a severe relapse.
Before beginning any type of bodywork, make sure the practitioner is certified in his/her field and knowledgeable about ME/CFS. Talk with the practitioner prior to beginning treatment and ask questions so you know what to expect. Be sure to ask how many treatments it should take before you begin to have noticeable improvement.
A few of the most frequently used bodywork therapies include:
- Myofascial Release Therapy – Often considered a type of massage, myofascial release therapy consists of very gentle manipulation of the fascia (connective tissue located between the skin and underlying structure of muscle and bone). Fascia can become tight and restricted in response to injury, inflammation, stress or even poor posture. Over time, the tightness in one area can spread throughout the whole body, which can be quite painful. The goal of myofascial release is to release the restricted fascia, which in turn eases the pain, increases the patient’s range of motion, and brings the body into balance.
- Therapeutic Massage – Therapeutic massage involves the manual manipulation of the body’s soft tissue. There are as many as 80 different types of massage, each with its own purpose. While the primary goal of some massage techniques is relaxation, the aim of therapeutic massage is to help the body function better. In addition to relaxation, it can help improve circulation, reduce stress, anxiety and depression, ease muscle aches and pains, and improve sleep problems and immune system function.
- Energy Medicine – There are numerous practices that claim to promote or maintain the balance of vital energy fields in the body. Some examples include: therapeutic touch, healing touch, Reiki, Johrei, vortex healing, and polarity therapy. All of these modalities involve movement of the practitioner's hands over the patient's body to become attuned to the condition of the patient and identify energy imbalances, with the idea that by so doing, the practitioner is able to use their own perceived healing energy to strengthen and reorient the patient's energies, thereby promoting health. Often these therapies report impressive anecdotal evidence, but little scientific research has been done to verify their effectiveness.
Exercise is a touchy subject for ME/CFS patients. Since post-exertional malaise (extreme, prolonged exhaustion and a worsening of symptoms following physical exertion) is a key symptom of ME/CFS, most patients balk at the suggestion of exercise. Part of the problem is that most people think of exercise as jogging, aerobics and other strenuous activities.
ME/CFS specialist Dr. Charles Lapp suggests redefining “exercise” for ME/CFS patients. Perhaps a better word would be “movement.” He says the main thing is to avoid strict bed rest, which causes deconditioning, which in turn makes symptoms worse.
Important ME/CFS “exercise” tips:
- Move your body as much as you are able – even if it’s just walking to the kitchen for a glass of water.
- Deep breathing exercises – learning to breathe from the lower part of the diaphragm – are essential. Shallow breathing increases neck and shoulder pain and can cause chest tightness, shortness of breath and spasms in the postural muscles. Deep breathing eases tension and improves the circulation of oxygen in your body.
- Stretch your muscles periodically throughout the day. Begin slowly with seated stretches. After several weeks, if you are able, progress to standing stretches.
- When you first begin any new type of exercise, think in terms of seconds, not minutes. Depending on the severity of your illness, start with as little as 30 seconds and build up very gradually (i.e., spend several weeks at each level.
- Take frequent rest breaks. The CDC recommends that ME/CFS patients rest three minutes for each minute of exercise. Once you’ve moved into strength training or cardiovascular exercise, it’s a good idea to only exercise every other day, allowing yourself a day of rest between workouts.
- Break up your exercise sessions. Five three-minute sessions are much better for ME/CFS patients than one fifteen-minute session.
- For those who are able to tolerate a longer period of exertion, water exercise may be a good option. Water’s buoyancy decreases the effects of gravity, displacing 85 percent of your weight. As a result, it takes less effort to move because you don’t have to support your whole weight. Also, immersion in water promotes relaxation, reduces muscle fatigue and lessens pain perception.
Every ME/CFS patient is forced to make certain lifestyle changes and adaptations. The key is to make the changes that will help you develop an environment that allows you to function at the best level possible and gives you the best opportunity to improve both physically and emotionally.
One of the most important changes any ME/CFS patient can make is learning to live within your “energy envelope.” Each day evaluate your energy level and imagine putting that allotment of energy into an envelope. Each time you expend energy, mentally remove that portion of energy from your envelope. When your envelope is empty, it’s time to stop. It’s often tempting to keep going, especially if you’re having a good day. But if you try to push beyond your energy envelope one day, you’re likely to crash and feel worse for several days. Learn to separate what needs to be done from what you would like to get done, and focus on the necessities first.
Other important lifestyle changes include:
- Practicing good sleep hygiene. Poor sleep is one of the biggest problems for ME/CFS patients, but unfortunately most do not have good sleep habits. In fact, Dr. Lucinda Bateman says 80 percent of her ME/CFS patients actually make their sleep worse. To learn more about good sleep hygiene, read: “Sleeping Without Pills.”
- Improving your diet. If possible, consult a nutritionist or dietitian to determine which foods are best for you. When energy levels are low, it’s easy to fall back on fast food or frozen dinners, which seldom have the best nutritional value. On the days you cook, make extra and freeze your own nutritional meals to have on hand for the days you have no energy. Or if you’re not able to cook at all, maybe a friend or family member would make extra and freeze it to share with you.
- Organizing your home to conserve energy. For example, keep a set of items you need regularly next to the chair, sofa or bed where you spend most of your time (i.e., phone, pencil, paper, nail file) so you don’t have to keep getting up to get them. Or always put your keys in the same place so you don’t have to search the house every time you need to go somewhere.
Living with a chronic illness like ME/CFS is difficult at best. The physical distress and hormonal imbalances coupled with drastic lifestyle changes can easily result in depression and anxiety. Your doctor may prescribe antidepressant or anti-anxiety medication and/or refer you to a psychiatrist or psychologist, who can help you learn to cope with all the changes. If your insurance doesn’t cover mental health treatment and you cannot afford it, check with your local mental health center. They usually offer treatment on a sliding scale based on your income.
Many ME/CFS patients find that support groups offer them the encouragement and support they need. Search for a support group in your area in ProHealth’s Support Group Listing. If you don’t find a group there, try calling local hospitals and your local newspaper to see if they know of any groups in your area.
If you’re not able to physically attend a support group, there are lots of online groups available. In fact, you can start interacting with other ME/CFS patients right now in ProHealth’s ME/CFS Chat Room or ME/CFS Message Board.
A vast number of different modalities are used in the treatment of ME/CFS. Some are quite traditional, while others are somewhat unusual. Many are controversial. It’s impossible to predict which treatment is best for you because what works for one person may or may not work for another. Study the various options and be sure to talk with your healthcare provider before beginning any new treatment.
A few other treatment modalities you’ve probably heard about include:
- Physical Therapy – Carefully supervised physical therapy may be helpful for ME/CFS, but it is essential that the therapist be very knowledgeable about the illness and care be taken to avoid over-activity and the resulting post-exertional malaise.
- Biofeedback – This mind-body therapy is designed to teach you to use your thoughts and will to control your body. It is based on the idea that people have the innate ability to influence many of the automatic functions of their bodies and has been confirmed by scientific studies. A biofeedback specialist uses special monitoring equipment to measure responses, such as heart rate, blood pressure, muscle tension, skin temperature and brain activity. Using these measurements, the specialist teaches you to recognize your reactions to thoughts so you can learn to control those reactions. .
- Cognitive Behavioral Therapy (CBT) – CBT is one of the more controversial ME/CFS treatment modalities because it is basically a psychological technique and is strongly supported by those who still insist on believing that ME/CFS is primarily a psychological problem. The treatment focuses on maladaptive patterns of thinking and the underlying beliefs. For example, a person who is depressed may have the underlying belief that he or she is worthless. While CBT is certainly not a cure for the physical illness ME/CFS, it can be a helpful tool for treating symptoms like depression and anxiety.
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