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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.
New England Premiere of I Remember Me
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- Last Updated: 07 December 2015 07 December 2015
by Rita Sanderson
On April 9th, 2002 I had the good fortune of attending the New England Theatrical Premiere of the highly-acclaimed film about ME/CFS, I Remember Me. This program was organized by the Massachusetts CFIDS/ME & FM Association and included a guest appearance and presentation by the film's Director, Kim Snyder. The Premiere took place at the Brattle Theatre, a relatively small but cozy movie revival house in Cambridge, where many documentaries, independent and foreign films are the mainstay. The 250-seat theater is often referred to as Boston's unofficial film school. The theatre was filled to capacity for the first showing.
This was a very compelling and informative account of "life with ME/CFS." This 74-minute documentary film was directed by Kim Snyder, an experienced filmmaker from New York, and a person with ME/CFS. This film marks Kim's directorial debut. Her film credits include documentaries i.e. Oscar-winning film Trevor, and feature films i.e. Home for the Holidays. The film focuses on Kim's personal struggles with ME/CFS and her pursuit of answers over a 5+ year period. Snyder's reflections and revelations about her own experience took on the form of an interview that was intertwined with stories of other people with ME/CFS, observations by a variety of clinicians and researchers, and visits to key locations. In between the dialogue and these clips, a mixture of scenes were interposed, such as the storminess of the sea, seclusion by the riverside, the fury of a strong wind tearing across the fields, and buildings crumbling to the ground—visual images that conveyed to me what I believe were Snyder's innermost feelings and suffering.
Snyder's quest for information took her to Lake Tahoe, Nevada, site of one of the first known clusters of this mysterious illness during the mid-1980s, where an extensive conversation with Dr. Dan Peterson was recorded and presented in segments. Dr. Peterson showed genuine concern about people who had been well, suddenly became ill, many still remain ill, and those who had taken their lives over the years. He also expressed disgust with the sloppy investigation conducted by CDC and NIH officials who left skeptical that anything unusual had taken place. A clip was also shown of Dr. David Bell who spoke about a similar occurrence in upstate New York.
A number of other doctors were interviewed including Drs. Nancy Klimas, Peter Rowe, D.A. Henderson, and Alexis Shelekov, and several others, all of whom strongly supported the serious, complex nature of this illness. They reported on their clinical or research experiences. Commentary by Dr. William Reeves, former branch chief of the CDC, was also included regarding the diversion of funds from ME/CFS studies and acknowledgment that ME/CFS has become a major health problem. Contrary to these opinions, Dr. Peter Manu, an ill-informed doctor, was filmed at one of the ME/CFS conferences saying that he believed ME/CFS was nothing more than a form of hypochondriasis, where patients and advocating doctors have been trying to "create" or turn it into a "real" illness.
Another comparable, but earlier outbreak of a ME/CFS-like illness occurred over 40 years ago in Punta Gorda, Florida. Snyder was able to identify and meet with several of the women who had become ill but they had no idea, until recently, what had happened to them. Apparently, a medical article had been published about their cases but no one had ever gotten back to them. There were three other significant interviews. One was with Michelle Akers, Olympic gold medallist and world's top soccer player, who spoke with a lot of emotion and frustration about her experience (she has since had to retire from soccer due to ME/CFS.). Another one was a rare discussion with Blake Edwards, a famous Hollywood film director (Breakfast at Tiffany's, Days of Wine and Roses, Pink Panther) and husband of singer Julie Andrews. Edwards was very candid but cynical about his struggles with this illness.
The most touching of all the interviews was the story of Stephen Paganetti, a young high school student from Connecticut. At the age of sixteen, this boy had a very abrupt change in his health and quickly became bedridden for over 2 years. He had to be home-schooled and have all his daily needs taken care of by his parents, including being fed through a tube. The film recorded the exhausting preparation for his graduation where he was brought by ambulance while receiving IVs and oxygen. He was wheeled on a gurney to receive his diploma. Later on, he was surrounded by many of his former classmates, some of whom made thoughtless remarks. None of them had ever paid him a visit at home during that time.
The film moved reflectively from past to present through numerous scenes, people and places capturing certain experiences that I feel effectively portrayed the kind of roller coaster ride Kim Snyder and most of us have been on. All the tests, brush-offs by local doctors, ridicule by other people, and the overall frustration, isolation, and pain are situations that I, and my peers, could readily identify with (with the exception of the severity of Stephen's case). A segment was included regarding suicide. Each of the leading CFIDS/ME doctors admitted to having lost several patients over the years, mainly due to pain, and in one case, driven by the total disbelief and disregard by local doctors that made this individual's life unbearable.
At the end of the film, the audience enthusiastically applauded Kim Snyder and expressed great appreciation for all the seven years of hard work that she put into making and marketing this film. It was a true labor of love! It was also a critically-acclaimed success garnering the following awards: Winner Best Documentary, People's Choice Award, Denver Film Festival; First Runner Up, Sarasota Film Festival; and Honorable Mention, Hamptons Film Festival.
Patients could say that they are already intimately familiar with this illness, so why go and pay to see a movie about it? All I can say is that people went to show their support for an incredible accomplishment by someone who has walked in our shoes. This film also provides a great opportunity to educate family and friends who still don't understand what ME/CFS is and how it impacts our life. Most importantly, our patient community now has a great new tool to educate medical professionals and others who don't quite get it. We thank Kim Snyder for her enduring legacy! For most of us, it took us one day (and perhaps another day or two of recovery) to see the results of Snyder's investment of 5+ years in the making of this film. She has been traveling to film festivals and screenings over the past year or more, making it a seven-year journey.
A lengthy Q & A session with Kim took place after the first showing of the film. She responded to dozens of questions from the audience who praised this award-winning film. She recounted her now seven-year experience working on this film. A couple of questions were raised concerning a few aspects that may have been overlooked in this film. One is the "poverty" that is often brought on by this illness, and the other is the need for a more accurate representation of the "ethnic" groups afflicted by this illness. Viewers felt these aspects ought to have been included. Other questions included why Fibromyalgia had not been mentioned . Snyder answered that her research used the terms/definitions coined during these early outbreaks that she had investigated. She recognizes that FM and CFIDS are intertwined, and she acknowledged having both. In response to one of the last questions, she announced that after 7 years, she found herself doing considerably better—for no explainable reason other than "luck."
This film was aired several times during April, 2002 on the Sundance Cable Channel.
Rita Sanderson is on the Board of the Massachusetts CFIDS/ME & FM Association. Special Thanks to both Rita and her daughter Tamara , as well as our heart-felt thanks to Kim Snyder for this great film.
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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.