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Treatment Overview
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- Last Updated: 21 January 2016 21 January 2016
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 in ME/CFS: A Primer for Clinical Practitioners.
Overview
Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia (FM) is making considerable progress, which has generated enthusiasm even within the medical community, and will hopefully provide more definitive answers to the cause and cure. Meanwhile, there are various options and strategies that can be used as part of a treatment plan for people with these illnesses. Standard treatment usually consists of prescription medications to help relieve the most troublesome symptoms. But patients can tap into the different disciplines, like naturopathic medicine and alternative therapies, by which to improve their overall health and lifestyle.
ME/CFS and FM share a fair number of symptoms (i.e. sleep disorder, pain, decreased energy and cognitive functioning dificulties) and many individuals have both illnesses, though one tends to be more dominant. For practical reasons, information about the most commonly used medications and treatments for ME/CFS and FM have been combined on our website.
It is important to remember results can vary greatly between patients, and effective treatment plans often come from a "trial and error" process. Furthermore, many patients with ME/CFS are found to have a heightened sensitivity to medications and often cannot tolerate standard dosages. Medication titration is often recommended—a process by which a drug dosage is slowly brought up to achieve optimal therapeutic effect. It is also better for patients not to start out on too many medications or products at once, in order to better observe the effects (or side effects) of each. Then again, some physicians will prescribe several medications together, in small to modest amounts, to produce a synergistic effect.
Since patients with ME/CFS and FM often see several physicians and/or other practitioners and take a mixture of prescription drugs and other products, it is strongly advised they review everything they are taking with each and every doctor to prevent interactions.
The multi-pronged approach
ME/CFS and FM are known to generate a multitude of symptoms and problems, though these can vary between patients. It does not seem very likely that one single drug or therapy will provide adequate treatment for anyone. Effective treatment plans could consist of several elements from each of the following approaches/modalities listed below:
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Conventional Medicine—Conventional medicine is a system that relies heavily on scientific research and technology and treats the disease and its symptoms by and large with pharmaceutical products. The primary objective is to help relieve or control symptoms and this is especially true for ME/CFS and FM. Even though these illnesses are still not fully understood, treatment will be geared towards alleviating the most disruptive symptoms, such as sleep disorder, pain, fatigue, cognitive disturbances, mood, infections, and cardiovascular and digestive problems.
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Supplements, vitamins & herbal medicine—Herbal preparations, plant extracts, vitamins, and dietary supplements have been used as medicinal agents for many years. In many countries, these are prescribed by physicians, much like pharmaceuticals, and the manufacturers of these products are held to specified standards. Patients in the USA are left with the responsibility in navigating through all the various products and brands, which should not be taken lightly, but there are some guidelines in how they can go about this safely.
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Lifestyle Management—When people are diagnosed with a new illness and/or their illness becomes chronic, it is always a good idea to become as well informed about it as possible and learn about different strategies and self-care skills. Knowledge can help people make better choices and feel more in control of their illness and situation. Patients will do better if they reevaluate what they still can do and make sensible adjustments and learn to pace themselves.
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Mental Health—Many people are able to link the onset of ME/CFS or FM to a specific event (or soon thereafter) such as an infection, an accident, injury or surgery, or some other type of trauma. However, others will say that they have been struggling with various health problems since childhood. Whether people are learning to accept and adjust to a sudden change/decline in their health, or have been in poor health for a long time, this will often take a toll on people—physically, mentally and emotionally.
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Nutrition & Exercise—Consuming more nutritious foods or eliminating those which may aggravate symptoms, and engaging in some level of physical activity can help to improve one's overall wellness. Though there are appreciable limits and consequences that ME/CFS and FM may impose, there are a number of things people can explore to help them stay as healthy, strong and mobile as possible.
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Alternative Therapies—Naturopathic Medicine follows a different philosophy/paradigm of disease than conventional medicine, focusing more on the patient as a whole and not only on one's disease. Its approach is to tap into the body's inherent ability to heal and maintain itself and this is accomplished through a wide variety of modalities such as qigong, yoga, meditation/relaxation techniques, acupuncture, chiropractic care, and physical therapy, as well as using natural products. Many of these practices and therapies are gaining more support by the general medical community and are being recommended to patients—especially those with ME/CFS and FM.
More resources
Antiviral treatment creates improvement in a subset of CFS/CFIDS/ME patients
Complementary & Mainstream Treatment Approaches by Dr. Jeanne Hubbuch
Comprehensive Treatment of FM by Dr. Robert Bennett
On the Morbid Fascination with Psychiatric Morbidity by Dr. Alan Gurwitt
Orthostatic Intolerance and CFS: A New Light on an Old Problem by Dr. Peter Rowe
Orthostatic Problems in CFIDS/FM and Post-Polio Syndrome by Dr. Richard Bruno
Research Advances in the Chronic Fatigue Syndrome: Impact on Treatment by Dr. Nancy Klimas
Review of Nutritional Supplements used for ME/CFS & FM
The Physical Basis of CFS by Dr. Anthony Komaroff
Warning Against Long-term Use of SSRIs and Stimulants
Recovering from ME/CFS
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- Last Updated: 01 December 2015 01 December 2015
by Kenneth Casanova
Diagnosis
I had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) for about 4 years before I obtained a diagnosis.
I often felt I was lost wandering in the dark; I spent much time in my mind trying to get a grip on what was happening to me. Identifying a problem, getting a hold of a problem is the first step in determining what one can do to cope and where to start looking for a solution. If one can't identify what is happening to oneself, then one doesn't know what to do or what approach to take.
For the first 3 years I was really sick with an interminable flu, which would get better and then get worse. For those 3 years I was either in bed or shut in my apartment most of the time. I was barely able to struggle out to buy food and do my laundry.
I wanted to know what was wrong—to identify what was happening to me in order to get a grip on it. After about a year of thinking I probably had a virus, my doctors began telling me my illness was all in my head, there was really nothing wrong with my body, or with me, at all. (The last refuge of medical ignorance is the patient's mind.)
Yet in certain moments it was clear to me that I was really sick; there was something really wrong with my body: I had fevers, chills, muscle-aches, and the weakness of a physical illness. This was a serious, flu-like illness—it was the same as when I had the flu as a child when everyone knew I was physically sick, when there was no dispute.
Now my doctors were telling me, despite my own reality, that I was not sick. In my clear moments I had to fight a two-front war: one front was against the illness—to cope, to fight to keep one's mental balance; on the second front, I had to fight the doctors: to assert my reality and demand and ask for help.
In other moments, I was in wavering doubt: could it be psychosomatic, or was it physical, or a combination of both? If only I could try like the doctor's were saying not to be sick. So one becomes confused; and a path, a course of action becomes hard to find and one wanders about in a dark woods .
Then in 1985 I went to a specialist who diagnosed me as having ME/CFS. This helped a lot because it helped me validate my experience, that I was actually physically sick. It helped me with the wavering doubt about my reality and experience; it helped me at least get a somewhat better grip on my situation and to identify my problem.
Coping
With this illness one has to find a way to accept where one is, rather than digging yourself deeper into the hole, pushing yourself beyond where you're able to be now—because you can only be where you are. Once you accept where you are, then you can find out what you can do within those limits.
You can't have control what you can't have control over; you can have control over what you can do within the limits you're given. And I think, given my own experience, that by living this way, you're able to expand your limits—you’re able to gradually get control over more things as the limits expand.
But you can’t expand those limits if you're constantly overreaching them. So there is a lot to be said about accepting where you are and then setting priorities within those limits.
So you need to do things you know are essential and can be done based on your limits. By saying: this is what I have to do, this I can do, and the rest I have to let go because I can't do it—then I think the limits gradually expand.
Certainly if there is something that you need that you can't do you should seek available help from your family, your friends, your community, or your government.
You do gain more control. One thing I've learned from this illness (or so it seems) is: before I had the illness, my mind, in many ways, was dictating to my body or emotions. Finally, somehow, my body broke down. Now my body was saying: "I'm taking over." So the body has to be given its due.The mind, somehow, has to accept this and give in to the body's basic needs; then gradually recovery can begin.
This is not to say that acceptance means becoming an invalid. Don't give up. Keep up as much of your life as possible, but within the limits that keep you from getting worse. Keep up hope, that over the long-run you will get better. (Make a distinction between your limits today and this week, and the long-run when you will be better.)
At first, during the first 3 years, I was very, very sick: either bed-ridden or mostly shut-in. Then, for about another 3 years I was moderately ill: I was able to get out more; I started physical therapy, recognizing that I had to do whatever I could to arrest and reverse the deterioration of my body.
I also learned meditation. As part of the meditation I learned to become aware of (my) behaviors that caused my illness to worsen. I then worked to modify or eliminate those behaviors.
I also learned which of my emotional patterms and conflicts could lead to behaviors that exacerbated my illness; I was then able to try to seek to resolve past conflicts and find better ways of dealing with present conflicts.
The meditation also induced the relaxation response, which autonomically helps to clear the body of present stress and accumulated past stress. Surprisingly, as a result of pursuing these methods, the intensity of my symptoms were reduced by almost 50%.
However, these methods were no cure-all. I remained exhausted and sick much of the time for years. The basic treatment was rest, more rest, giving-into the body's demand for rest as much as possible (Aggressive Rest Therapy, the term coined by Greg Fisher).
As I said, during the second 3 years I began to improve. I had begun physical therapy: slowly, haltingly, testing the limits of physical exercise; very often overreaching my physical limits and paying for it. But slowly, haltingly, I was able to make progress and extend my physical capacities. This has been a process of years.
As I had improved significantly I began to follow the "2 out of 3 parts of the day policy," that is, I could be moderately active for two out of the three parts of the day: either morning and afternoon, or morning and evening, or afternoon and evening. The third part of the day I had to rest if I didn't want to get worse.
Now after 9 years of ME/CFS I am moderately active with infrequent relapses—as long as I watch and monitor my activity level. I do have to periodically, during the day, monitor my body for fatigue. If I've done several tasks or activities and I'm starting to feel a little tired, I have to check myself and be aware of how I'm feeling; I then have to assess myself and my condition: can I carry-on with another limited activity or have I reached the cut-off point, that is, if I don't stop what I'm doing and rest, chances are good that I'll have some amount of relapse, that I'll have to pay for not stopping.
I've learned through painful experience that it's better to miss one activity today than six in the next 2 or 3 days. I've learned to be conservative on curtailing activity if I'm starting to get exhausted, because too many times I've ignored my body cues, pushed myself, done the one extra thing and then been in bed for 2 or 3 days. Better to say: I'm going to go home now and take a rest and be sure I can do what I’ve got planned for tomorrow. This is a trial and error process that I believe many ME/CFS patients have gone through.
Now after 9 years of illness I am active working on a number of volunteer projects which keep me fairly active during the day. I also, as part of my continuing physical therapy, work out 3 times a week for about 90 minutes each session at a health club. A short afternoon nap or rest gives me moderate energy for the evening.
I find that making sure I get at least 8 hours of sleep per night is crucial to having energy the next day and for avoiding relapses. Getting to bed after 11:30 is also taking a risk since I may wake up too tired. I also find that eating 3 nutritious meals daily on a regular schedule is important in maintaining my energy level and avoiding relapse. Moderately high doses of vitamin, mineral, and protein supplements markedly increase my energy level and feeling of well-being.
I think it's crucial to note that there are stages to the illness and recovery, though one moves from one stage to another either more or less gradually.
For me there were four stages: severe illness, moderate illness, improvement with limited activity and frequent relapses and my present stage of moderate activity with infrequent relapses. It took me years just to move from one stage to the next, others may do so in shorter time periods. Also for me, sometimes I would slip back before moving forward again.
I believe that what a ME/CFS patient can do to cope or help himself/herself depends very much on the stage of illness/recovery he or she is in. In the stage of severe illness, it's almost impossible to do much more than rest, except for essential activity like personal care, eating, getting to the doctor, etc. At a later stage, mildly progressive exercise will help rather than hurt; some social activity may give you an emotional lift. A quarter-mile walk may help or hurt depending on the stage you're in.
Exercise and CFIDS
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- Last Updated: 02 December 2015 02 December 2015
by Diane Gallagher, Certified Fitness Instructor
Any doctor who's expert in the Chronic Fatigue Syndrome/Chronic Fatigue and Immune Dysfunction Syndrome/Myalgic Encephalomyelitis (CFS/CFIDS/ME) will confirm what you already know: if you exercise one day, you're likely to feel sicker than usual the next day.
But then the doctor may well go on to tell you that inactivity—lack of exercise—can lead to cardiovascular disease, brittle bones, increased susceptibility to injury, and increased fatigue, weakness, stiffness, aches, and pains. It's quite a conflicting message. As both a person with CFIDS and a fitness instructor—which sounds like an oxymoron, I know—I hope I can shed some light on the issue of sensible, graduated exercise for patients.
About six years ago I was, among other things, teaching 12 aerobics classes as well as taking 2-3 dance classes each week. Then, one day, I was suddenly knocked off my formerly active feet by CFIDS/ME. After coming through the initial devastation of the illness (a process that took about two years of mourning my old life and the future I thought I'd have), I gradually improved to the point where I could do a bit more than shuttle back and forth between the bed and the couch.
I therefore decided to devise some kind of exercise program for myself. I was well aware of the dangers inherent in physical inertia, and I thought that someday I might recover from CFIDS/ME, only to be inflicted with other health problems resulting from my inactivity. I know it's hard to think ahead when the present is so dire, but hoping for a healthier future is what keeps most of us going, after all.
I quickly learned that many of the principles of exercise physiology no longer applied to my body. I had to approach things in a painstakingly and slow and cautious way. Eventually, it paid off; I actually began to feel the benefits of exercising.
I still have CFIDS/ME, which for me means being able to function (at times sluggishly) for a maximum of six hours each day at this point. (The remaining hours are spent on the old bed-couch shuttle.)
But I have more energy during those functional hours than I would if I didn't exercise. I'm strong and limber; my back and neck hurt less; I'm staving off osteoporosis, injuries, high cholesterol, and high blood pressure; and I don't feel like a worthless lump (not completely, anyway!)
Ultimately, I decided to take up teaching again, but this time, due to my limitations, I offered a therapeutic program geared to people with chronic illnesses. About half of my clients have CFIDS/ME, Fibromyalgia (FM), or other illnesses; the other half are healthy and, for various reasons, want or need a gentle exercise program. It's a good mix. We "walking wounded" have been able to educate our healthier classmates about chronic illness, and the presence of healthy types keeps the classes from degenerating into "poor-me" sessions.
Through my teaching I've learned that there are as many varieties of CFIDS/ME as there are people who suffer from it. There are times in class when everyone is doing a different variation of an exercise—or simply opting to rest—to accommodate their own specific limitations.
I've also noticed an interesting difference in those with FM and CFIDS/ME. Because of their stiffness and joint pain, those with FM move slowly and painfully from one position to another. Those with CFIDS/ME generally move more fluidly, but due to their brain fog, have difficulty following directions.
So if a class that's sitting is asked to stand up, there's a clear demarcation between the two groups. The patients with Fibromyalgia grunt and struggle slowly to their feet; the patients with CFIDS/ME, with relative ease of movement, lie down!
If you decide to try exercising, it's essential to remember that your response will be much slower than in a healthy person. You'll probably feel worse for the first couple of weeks, so give it a month's try. In a couple of months you will probably notice that you're not as stiff or achy, and that you have more energy. In fact, I have one FM client who even says she has a spring in her step after class. Of course, it took many months for her to arrive at that point, and not everyone responds so markedly, but many do.
Here are some other tips for exercising with CFIDS/ME:
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Do things correctly. If you don't know how to move your muscles properly, maintain the correct posture, etc.—and most people don't—find a professional to help, or you may worsen your plight.
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Start off VERY slowly. I've talked to many people who say they walked for ten minutes one day and felt okay, so they walked for 30 minutes the next day, and felt like they'd die the following day. No wonder. Try exercising slowly and gently for five minutes every other day for a month, even if it feels too easy. Then you can increase it to 10 minutes and pick up the intensity a bit. You can continue to increase the intensity and duration, but only infrequently and in small increments. You have to give your body a very long time to get used to each small increase in activity. You do reap benefits from even a small amount of exercise.
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Once you have established a regular workout program, try to be consistent. There will be days when you re too sick to stand up, but don't let anything other than your illness derail your exercise routine. If you miss more than a couple of weeks, go back to your starting point, and don't increase the intensity or duration until you feel very comfortable with it.
Following these guidelines can help you maintain optimum functioning (and future health) without exacerbating your CFIDS/ME symptoms. Forget about no pain, no gain and go for the burn—go for the return of greater suppleness and strength.
Diane Gallagher can be reached at Artisan Exercise in Wayland, Mass. 01778.
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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.