The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Case History - "The Prisoner" by David Bell, MD

Discussion in 'General ME/CFS News' started by Wayne, Apr 4, 2012.

  1. Wayne

    Wayne Senior Member

    Ashland, Oregon
    Note -- Fairly Long: The following ("The Prisoner") was posted on the ProHealth Board today. I thought it was interesting, and fairly balanced. I also thought the initial "review" by a ProHealth member was very good.

    Regards, Wayne


    Case Histories of ME/CFS: "The Prisoner"
    by David S Bell, MD, FAAP
    April 4, 2012

    This is the case history of a man whose fear of relapse 4 years after sudden onset of ME/CFS nearly robbed him of recovery. It is excerpted from Dr. Bells free e-book Faces of CFS - Case Histories of Chronic Fatigue Syndrome, published in August, 2000 ( David S Bell, MD, 2000), and downloadable at For more on the difficulty of defining recovery in ME/CFS, see the video of Dr. Bells recent 25-year follow-up on his patients.



    It is so ironic that while most doctors see CFS as hypochondriasis, I feel that hypochondriasis may be the result of the combination of CFS and the physician ignorance. Patients must sail these waters without guidance, forcing them to make it on their own.

    Those of us in good health rarely appreciate our good fortune. We live our lives ravenously, devouring the minutes of the day with work, play, love - ever eager for the next course. We charge ahead, assuming life will go on as always.

    In order to accomplish this, we allow ourselves to be oblivious to the suffering of others. We push their pain to the deep recesses of our subconscious, and remain blind to the fact that around the corner may lie an event that will change the foundation of our lives with similar finality.

    Gary Burns was just like the rest of us. There was nothing malevolent about his view of life; he harbored no evil intentions. Yet, he was as unaware of the suffering of others as the rest of the world was about to be of his own suffering.

    Like most patients, Garys ordeal began with a bout of what he assumed must be flu. He was 37, robust and active, a husband and a father.

    This flu announced itself to Gary one day in October of 1986. The course of Garys illness, and the eventual dissolution of everything that he had once taken for granted, was typical for an adult who experiences what we doctors call sudden onset of chronic fatigue syndrome (ME/CFS).

    Initially, he was offered a months sick leave by his company, a nearby factory. He tried to go back to work when his sick leave ended, but often he felt in a state of collapse by noon, and had to leave the jobsite.

    He took an extended leave of absence, hoping for recovery. If he could just catch up on his sleep, he kept telling himself and others, all would be well. Gary had moments during the day when he found the strength to shower, wander through his house, and ponder the possibility of returning to his job. But, soon enough, it would return, and he would tumble onto the sofa and sleep the day away.

    Gary still had no idea what it was, and his doctor hadnt a clue, either. Gary had been ill for six months when his doctor announced that he had been unable to discover a medical explanation for Garys symptoms.

    He advised Gary to snap out of it, to get more exercise, and to see a psychiatrist.

    Like a lot of people, Gary trusted his doctor and believed what his doctor had told him. With some embarrassment, and worry over the expense, Gary arranged an appointment with a psychiatrist. After all, he was desperate, and willing to try anything. The psychiatrist probed for information about Garys life, and Gary answered the psychiatrists questions honestly.

    He said he was in the process of being fired, and that he was going broke.

    He confessed he had been unusually irritable, chastising his kids for creating noise and havoc in the house, and sulking whenever his wife tried to comfort him.

    In a revelation that was somewhat difficult for him, Gary admitted he was depressed.

    The doctor prescribed an antidepressant, and invited Gary to continue therapy in order to resolve emotional conflicts - conflicts that the psychiatrist suggested were the cause of Garys disabling illness.

    The following day, however, when Gary took the first pill, he rapidly deteriorated, feeling as if he had been hit full force by a freight train.

    He slept for two days, and when he was finally able to stay awake, he felt hung over, as if he had drunk a case of liquor the night before. Perhaps not surprisingly, Gary decided to cancel his next appointment.

    The psychiatrists secretary insisted the antidepressant could not possibly have caused Garys severe reaction. She also advised him he would be charged for the appointment, whether he showed up or not. So much for psychiatry, Gary thought, and never returned. By then, Gary felt as if he was riding a wild and powerful horse, but the reins had slipped from his hands.

    Desperation was a daily staple, and as he lay in a helpless mound on his bed, or the sofa, he searched his mind frantically for solutions.

    His mother, whom he had frequently accused of being a health nut, owned a health food store. Gary decided to sample the assorted vitamins and nostrums available in his mothers shop. He began eating organic food and taking vitamins for the first time in his life, although he noticed no immediate improvement.

    On his worst days, he wondered if he had a terminal illness, especially cancer, that his doctor had missed. He decided to read everything he could about cancer; if the doctors were incapable of discovering the cause of his symptoms, he would become a doctor himself.

    In the course of his reading journey, Gary came upon an article that described CFS.

    The stories of the patients in this article resonated with his own experience of the disease: sudden onset; a long, chronic course, exhaustion, headaches, pain; sensitivity to light, night sweats, the sensation - if not the reality - of high fever.

    He was stunned when he read that patients with CFS are exquisitely sensitive to many drugs, including anti-depressants such as the one he had taken. He felt as if he was reading his own biography. In fact, he was so persuaded that the long-standing mystery of the last year was resolved, he felt incredulous that his doctor had missed the obvious signs, which now seemed so obvious.

    There was just one small detail of the disease, as CFS was described in the article, that didnt seem to fit: Gary had never really thought of himself as a Yuppie [with Yuppie Flu].

    Certain of his diagnosis, nonetheless, Gary plunged headlong into health nut-ism, with his mothers encouragement and guidance. He eliminated fat from his diet and took handfuls of vitamins. He waded through lengthy discussions of echinacea, germanium, and zinc. Still, he remained unable to work.

    Even though previous attempts to exercise had ended in disaster, Gary next decided workouts might be the solution to his nightmare.

    He committed himself to pushing past the sore throats and exacerbated fatigue that had followed on the heels of vigorous activity on other occasions. In fact, he gave it everything he had, beginning with a brisk, one-mile walk each day.

    On day four, however, when he tried to jog, he felt so suddenly weak at a juncture in the road not far from his house, he wondered whether he would be able to make his way back on two feet. He was completely bedridden for the next two weeks.

    Gary felt hopeless.

    He had been fired, and most of his friends had dropped him, seeming to have forgotten about everything they had once shared in common.

    The medical profession seemed utterly ignorant of his />

    A day rarely passed when he failed to ponder suicide, but the notion of leaving such a traumatic legacy for his children always pulled him up short.

    Now, he became exceedingly cautious with his body.

    He cloistered himself from the noise and activity of his family.

    He woke at nine, downed his vitamins, and showered, and then he rested.

    At noon, he ate a health nut lunch of fruits and grains, and then he rested.

    In the late afternoons, he attempted a few chores and stretched his muscles in the quiet of his living room. His children stayed with neighbors after school until his wife returned from work.

    Together, the family ate a nutritious dinner. Afterward, Gary rested.

    At ten, he went to bed, where he lay quietly until he fell asleep at midnight.

    Two years of Garys life passed in this way.

    Most of what was important to him before the onset of CFS had dissolved in those two years. His children became used to their new father, the one who could not play baseball or take them to the county fair. They began to forget their old father.

    And then something wonderful happened: Gary started to get better.

    The severity of his daily headache lessened, as did the crushing fatigue; he was able to be more active. Gary felt confident that his improvement was due to his adherence to his rigid schedule of the previous two years.

    In the third year of his illness
    He told me he felt he was functioning at about 70% of his pre-CFS activity level.

    Still, he planned his days with great care, taking a short walk just twice a week, playing catch with his children each day. He told me proudly that he could ride the lawn mower and cut the entire lawn without stopping to rest in the middle of the job.

    It was apparent that he had finally accepted his new life; his despair was gone.

    By the fourth year
    Gary complained only of persistent fatigue, muscle aching, and the fractured, disturbed sleep patterns that are common to virtually all CFS patients, and, in fact, are one of the most pervasive hallmarks of the disease.

    Although Garys symptoms were less severe than they had been in the past however, he continued his rigid adherence to a reduced level of activity. He believed that his careful attention to what he ate and his meager exercise regime was responsible for his improvement; that he had finally regained control of his destiny.

    I became worried - not about the illness, but about Garys nearly obsessive concern with over-exerting himself. He had become his own prisoner, caught up in self-imposed rules and regulations that severely limited his experience of the world. One day, I voiced my concerns. I told him that he was both his own jailer and inmate.

    I told him he needed to take some risks. I suggested exercise.

    His mouth nearly fell open, recalling his own disaster with exercise two years before. Most CFS patients have learned through bitter experience that efforts to surmount their disability and engage in the kind of exercise activities they routinely performed before they fell ill is unlikely to have a good result.

    But the problem is not exercise, it is the assumption that exercise will by definition change the course of the illness.

    For patients with severe illness, exercise does not change the course and may lead to worsened symptoms.

    But if CFS is getting better, exercise is great and may speed the recovery.

    I suspected Gary was no longer in the severe illness category. In fact, I was uncertain whether his reduced activity level, which continued to hover around 70% of what was normal for him, was due to CFS, or due to physical de-conditioning as a result of his fear of exertion.

    After all, he had been monitoring himself like an organism under a microscope for three years. Granted, he had learned the brutal limits of his disease through suffering, but it seemed to me that he was becoming almost hypochondriacal in his attention to his body.

    It is so ironic that while most doctors see CFS as hypochondriasis, I feel that hypochondriasis may be the result of the combination of CFS and the physician ignorance. Patients must sail these waters without guidance, forcing them to make it on their own.

    Of course, the only way to find out was to ask Gary to exercise, and he and I both knew the proposition was risky.

    Which is better: to exist safely in a compulsively rigid way of life? Or try for a full-out, 100% return to normalcy - at the risk of initiating a relapse that might turn the clock back for Gary by months or even years?

    Gary reminded me that it was his life I was risking by making such a request, not my own. Good point. I was asking him to throw away his fear of the pain and suffering of the past years, all the while courting its return. Did I have that right? I had come to know Gary well by then. My observations and intuition led me to believe that Gary was going to be one of the lucky ones; he was going to beat the illness.

    All signs pointed to continued improvement.

    If my suspicions were in error, I thought, Gary would have a relapse, but he would likely recover from it within a month.

    And, more importantly, at least we would have our answer. He would still be a prisoner, but he would be prisoner of the disease, not his own fear.

    After a great deal of discussion, Gary finally agreed to try.

    We planned an exercise program that was extremely gentle.

    Most healthy people wouldnt have considered it an exercise program at all.

    We planned stretching exercises, then slow walking, then brisk walking - depending upon the progress, if any.

    When Gary joked that he was dedicating his body to science, his wife frowned. In the beginning, Gary experienced significant anxiety, and increased muscle aching, as well. But, over a period of weeks, the quality of his sleep began to improve, along with a decrease in the muscle pain.

    In fact, at the end of two months, it was clear to Gary and to me that he was better.

    And when his fear began to diminish, he became more willing to venture out into the world of the living. After three months, he had even more energy, and felt confident and enthusiastic about life to a degree he had not experienced for years.

    This is not to say his fatigue evaporated. He was tired, sometimes very tired. But, as Gary pointed out, it was good tiredness, not a CFS tiredness.

    In the complicated realm of CFS, where there remain so many unanswered questions, I am not sure what recovery actually means.

    I often wonder whether the illness vanishes completely, leaving the patient the same as before,

    Or if it simply recedes in the background, becoming mild enough that the patient learns to ignore its nagging distractions.

    Both probably occur.

    In a study Mary Robinson did of our patients, 20% remained disabled after 15 years. Of the remaining 80%, half persisted with symptoms although they were able to lead relatively normal lives.

    Several years have passed for Gary and we continue to stay in touch. He has clearly entered that privileged circle of CFS patients who actually recover fully from the disease. I do not think that his continued recovery can be attributed to exercise, or even the vitamins, but who knows?

    I do feel that if Gary had not tried the exercise, he would have stayed in his prison for the rest of his life. Gary recovered for reasons that are mysterious, but he needed to take a leap of faith in order to demonstrate the recovery to himself.

    Gary doesnt really think about these issues very much anymore. He is working again, and engaged once more in the lives of his spouse and children. Nevertheless, he has been changed profoundly by his experience. He left his prison of four years, but as a different man. He carries with him an appreciation of his incredible good luck. His suffering now is confined to feeling the suffering of others who are in pain.

    When he watches the news on television, and there is a story about AIDS or multiple sclerosis or cancer or CFS, he does not rush to change the channel as he once might have done.

    Instead, his eyes fill with tears.

    - David S Bell, MD, Aug 15, 2000


    Note: This information represents the experience and opinions of Dr. David Bell. It is generic and for general information purposes only. ME/CFS/FM is an extremely complex illness, and such general information may not be appropriate for an individual with this illness. Therefore, should you be interested in the ideas presented here, please discuss them with your personal physician.
  2. *GG*

    *GG* senior member

    Concord, NH
    Thanks for posting, will have to read some time.

  3. Googsta

    Googsta Doing Well

    Hmm, I was enjoying that (sounded very familiar) until his doctor piped in..

    Like Gary, I tried to push at the beginning & fell flat on my face. If I hadn't been a 'healthy' weight when I got sick I am convinced I'd have died a slow painful death. Within 12 months of onset I'd lost 42 kg.
    When I began to recover from these early relapses, I built up slowly over several months until I could walk 40 mins a day. Eventually I joined the gym (first timer) & swam laps, I went bacl to work.
    But time & time again I relapsed, each recovery was worse until now, where I am never quite well at all, whether I am in a relapse or remission.

    I think Gary did the right thing limiting himself for 4 years, he gave his body an excellent chance at recovery. I admire him for setting his own boundaries with activity, diet, family & rest.

    I think he could have gone either way on the advice of his doctor. Saying it 'nearly robbed him of recovery' is IMHO a gross exaggeration.

    I think it is for each patient to assess whether this is the course of action for them & clearly is only for those who have been able to maintain a high level of function for at least a couple of years.
    xrayspex and CJB like this.
  4. Cort

    Cort Phoenix Rising Founder

    I think it shows how astute a Doctor, Doctor Bell is...HE's probably seen 1,000's of patients and in this particular case 'going for it' worked. I don't seem to be able to get over the exercise hump either...

    It's just a very mysterious disease! You were able to start exercising at a good pace but still relapsed....There are just no guarantees - a few lucky people can work their way out of it...Maybe it was Gary's extreme care early on that built up the Foundation he needed. I never really did that..
  5. CJB

    CJB Senior Member

    Very well said.
  6. Wayne

    Wayne Senior Member

    Ashland, Oregon
    To Exercise or Not

    I seem to remember Paul Cheney saying once that he didn't see a significant difference in the prevalence of CFS between "high achieving" Type A personalities and the easier going Type B personalities. But he did notice a difference in their recovery success. Type B individuals (like Gary in this case study) gave themselves the time to rebuild a foundation before attempting to go beyond their limits, and were generally more successful.

    Regarding exercise: For myself, I don't view it as an "exercise" or "not exercise" scenario. I've noticed my ability to exercise (almost exclusively rhythmic walking) varies from day to day, and hour to hour. I've come to believe that forcing myself to walk at a time of day when it doesn't feel good is harmful. Walking at a different time of day when I feel up to it is beneficial.

    I think it boils down to always discerning (to the best of our ability) what our bodies can handle at any given moment. I feel grateful I've had the ability to avoid most of the detrimental effects of severe deconditioning that can accompany prolonged inactivity. Grateful, because I fully realize other pwCFS simply don't have that same ability.

  7. xchocoholic

    xchocoholic Senior Member

    Worth repeating ... tc ... x

    PS. As far as exercising goes, I've always found that I CAN exercise so my body isn't too weak to exercise. I actually acquire muscle strength very quickly. I just can't maintain any consistent level of exercise without getting chronic PEM ... meaning, everyday I feel tired and I can't think. At some point, my inabilty to think becomes so severe that it's dangerous so I have to back off.

    Everytime so far,after I stop the exercising and rest up for 2 - 5 days, I'm back to feeling energized and can think again.
  8. Googsta

    Googsta Doing Well

    Thanks CJB ;)

    I hope your right regarding Dr Bell Cort.

    I have to admit I am in the 'high acheiver' group Wayne, much to my own detriment :rolleyes:
  9. xrayspex

    xrayspex Senior Member

    I can relate to Wayne and xchoc....I have been able to keep walking thankfully the 22ish years have had this issue, but only at certain times of day and if I push exercise too hard I get PEM and the thinking issue.....I am not sure if its CFS or a spinal issue that happened around same time (hard to know if its structural or organic sometimes) but doing aerobic stuff like biking running etc not good idea ever for me, too much pain for too long after, but thank god for walking, makes me feel much better

    its a good article but does worry me a little,I could see many physicians using it to project on to a client that its psycholgical when lack of progress, its a very tricky subtlety to know when one can do more....scary territory.....I really like Dr Bell's work, but I do not feel comfortable with idea some external source would ever have more authority than I on knowing wht i can handle.....i loved running and dancing and I have tried every which way over the years to be able to do that again and finally learned its like hitting head against a wall and not to do it. But i can buy idea that if someone is doing nothing at all that perhaps from time to time they could cautiously try to do a little bit with support and could understand it might be hard to tell how much is learned fear and its very nuanced situation isn't it, could be dangerous but in few cases could prevail
  10. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    I agree with that... it could of just as easily started to head the other way. I guess thou as soon as it went to thou if it had, he would of then stopped due to being already so careful.

    The fact he was functioning at 70% already and had improved already that much and was on an obvious improve.. made this trial to exercise far less risky then it would be to someone who has less functioning.

    When I had my remission years ago.. I recovered a lot faster and naturally from that 70-80% recovered point..
    I think I was into like a full remisson state 6-12mths after that point and I didnt push myself at all to exercise to recover. Improvement just got faster and faster without it, Im naturally active and energetic when when well.

    One naturally starts to do more anyway due to feeling better.... he likely would of noticed he was much better and would of let go of his old habits with a little bit more time unless he'd developed a bit of OCD to follow a set pattern everyday.

    I currently dont follow set patterns every day (I only follow set patterns when Im much more severe eg when at a10% functioning level, to ensure I do rest enough). I just adjust my activity at all times to however I feel and how generally Ive been health wise in the past week or so.

    I do think its okay to test the waters occassionally if one does it very very slowly to make sure one dont end up with a big crash. I do think it is important to have some idea where ones limits are... I know mine are currently between 1hr-1.5hr of daily on feet activity.

    I hope the psych field dont get hold of this David Bells post and use it to push the we are all deconditioned thing. I kind of fear that will be the result of this article
  11. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    It intregues me how some can build up muscle strength with this illness. I went throu a stage (interesting when I moved out of my house for a while, I think mold in this house affects me) where the POTS wasnt affecting me so much so I was able to exercise (only thou in an non aerobic way.. Id get symptoms as soon as I got my heart rate up) for 2 hrs straight a day on feet exercise (walking combined with so many seconds running..then walking again)

    I did this for a couple of months without a crash but didnt manage to build up any muscle strength or any extra stamina at all from the exercise, my limits stayed the same..actually i did improve aerobically by FIVE whole SECONDS for 6-8 weeks (100hrs) exercise!!.

    That whole thing was frustrating.. I putting time into exercising and didnt get any like fitness improvement at all or any better ME/CFS wise. Still couldnt run for a one minute.
  12. xchocoholic

    xchocoholic Senior Member

    Hi tan,

    What I mean is that I could increase the weight as well reps which lead to increased muscle strength. I've only been able to run or do anthing aerobic about ten times in the last 22 years.

    I did this in pt a few years ago. The problem was that my pem caught up with me and although I could
    still lift the same weight I couldn't do the reps. I spent my last day in pt resting on my back more than exercising.

    I was booted off the treadmill at the test facility
    the last time I tried it but all I remember was that my heart was pounding and I was told to lay down. I have a lbb too tho.

    Tc .. X
  13. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    ah thanks for explaining what you meant.

    I dont know if I could build up strength or not, I havent tried to do that as I only tried to build up fitness and my stamina.
    (wondering now if I would be able to get stronger or not).
  14. Calathea

    Calathea Senior Member

    80% recovery rate at 15 years sound suspiciously high to me, I thought it was much lower?

    The thing that strikes me about Gary is that he was unusual in taking to aggressive rest therapy so early on. I've never known anyone who did this. I took years before I even began to understand pacing, and even now I overdo it on a regular basis. What Gary did is probably exactly what we should all have done, but between personality type, wanting to get on with life, the need to get on with having a job/raising a family/other demands, and the enormous pressure from society and the medical profession to "snap out of it" and get back on our feet, we don't. We consistently overdo it instead, and then get irritated when we are accused of deconditioning, of being afraid to try exercise. I've tried a gentle exercise regime umpteen times, and it's always led to a relapse. This isn't the same as maintaining a general level of activity, which is the sort of thing I never really thought about, e.g. getting to university and having a social life when I was still only mildly affected.

    So the irony of it is that we are all accused of being exercise-phobic and being deconditioned, this very pressure means that it's extremely unlikely to happen. The ones who really do become exercise-phobic and deconditioned may have trouble in the last stage of their recovery, but they're the ones who actually recover in the first place.

    It's also noteworthy that his recovery was relatively early by ME standards. The longer you're ill, the lower your chances of recovery.
    taniaaust1 and Googsta like this.

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