CFS is a rather unusual disease. Everything about it is counter-intuitive to what doctors consider "common knowledge".
Doctors generally recommend that patients build up their muscle strength and stamina by exercising, but CFS patients get worse when they follow that advice. In 1999 Dr. Paul Cheney, one of the pioneers of CFS research, went on record as stating: "The most important thing about exercise is not to have [patients with CFS] do aerobic exercise. I believe that even progressive aerobic exercise is counter-productive. If you have a defect in mitochondrial function and you push the mitochondria by exercise, you kill the DNA." (Lecture given in Orlando, Florida at the International Congress of Bioenergetic Medicine, 5th-7th February 1999) http://www.meactionuk.org.uk/CRITICAL_CONSIDERATIONS.htm If Cheney said it, that's good enough for me to believe that it's true and proven valid, because he is one of three people (Daniel Peterson and David Bell are the others) with the longest history of treating CFS.
Lane, Barrett, Woodrow, Moss, Fletcher, & Archard (1998) found that 37% of patients with CFS had abnormal lactate responses to exercise. Other researchers have found other objective markers that prove the patients are telling the truth when they say they feel worse after exercise – their bodies react very differently than a healthy body, and in ways that prove the problem is not merely deconditioning.
CFS/ME tends to affect the most-used muscles and make them weaker (Ramsay, 1983). When a patient tries to exercise their way back to health on doctor’s orders, the muscles rebel from being overused, sometimes to the point of paralytic muscle weakness. I noticed this myself; whenever I had to use my hands to hold myself upright because my balance was off, by the end of the day I would not even be able to lift a fork from the dinner plate to my mouth because I simply didn’t have the muscle strength in my wrists to do it. After a significant amount of typing, I might not even have enough strength left in my fingers to push the buttons on the TV remote. Doctors who are thinking only that exercise will build up muscle strength are not aware that, for example, specialists believe that post-polio is a result of overusing the remaining healthy muscles. Even steel, after sustaining enough strain, will give out, and muscles are no different: push them beyond their limits and they fail.
The solution to these problems is called Pacing. As soon as you notice your muscles fatiguing, switch to another activity that rests these muscles (including the ones in your brain) and uses different ones, or simply lie down and do nothing. Brain fatigue has been noted from reading, working on the computer, even talking on the telephone (which is why many of your friends with CFS don’t want you to call them – at one point, I could manage only a couple minutes on the phone before being so completely exhausted that I needed a nap). Unlike talking face-to-face, where your eyes can assist you in interpreting, on the phone you have to concentrate 100% with your ears, and if, like me, you have trouble with your hearing going in and out, you have to concentrate even harder to follow the conversation. It was at that point that I was trying to find a new doctor, but the severe limitation on how long I could be on the phone before my brain shut down made that process very difficult. Some days, I could only manage to be coherent for one call the whole day. And since I could not multi-task (taking notes while talking on the phone), calls took much longer than they should, because I had to continually ask the person to wait while I wrote something down.
71% of patients in a 1999 CFIDS.org study reported pacing was beneficial, and none reported adverse effects. In a 200l AfME study, 89% found it helpful.
In a recent paper on pacing, Ellen Goudsmit, who is both a CFS patient and a Chartered Health Psychologist, noted "One of the most common problems reported to us is the reluctance to stop an activity before it has been completed. This is perhaps the main reason why at least in the initial phase of the illness, many continue to operate well beyond their limits." http://listserv.nodak.edu/cgi_bin/wa.exe?A2=ind0704a&L=co_cure&T=0&P=3911
And it’s my belief that this is the cause of most relapses: Type A patients who continue to work despite increasing symptoms until their bodies simply shut down to force them to stop. Fortunately(?!), at the stage that I was still refusing to accept my new limits, my body found a surefire way to make me stop and lie down: it issued the signals that I recognize as meaning that I had a few seconds to get my feet above my head before I faint. Quite often, this would mean that I would take a box out of the closet, find what I needed, and have to leave the box in the middle of the floor before I landed on the floor myself. It bothered me to leave the box there instead of putting it away, but adding to the clutter is less injurious than hitting your head.
Action for ME (AfME) suggests that patients plan to do only 50% of what they think they can. One of the many differentiations between CFS and depression that have been noted is that depressives underestimate their abilities and CFS patients overestimate. Personally, I find that my head still thinks that I’m able to function at pre-CFS levels, leading me to say I’m going to do things that I am completely incapable of, unless I stop and consciously think about what I’m committing to. Rationally, there is no way that I am going to walk around the neighborhood for a couple hours distributing flyers for a good cause, not when the day before I walked to the store on the next corner and had to sit down on their floor, wondering how I was going to get back home. So, unless I’ve worked through the plan analytically step-by-step, the odds are that I’m going to "think" I can do at least twice what I’m really able to do. If I plan to do only half what I think I can, I’m actually pushing my limits rather than following the AfME guideline to conserve some strength so you don’t make yourself worse. I find it better to dispense with the "plan" and just work from a priority list that implies that things on this list will be done in the next two weeks, and that each day I will do as much as I can before I get the signal to stop.
Black, O’Connor and McCully in 2005 tried an experiment in which CFS patients were asked to increase their activity level. The initial data showed that they could do more (although they reported more fatigue, muscle pain and mood disturbance). But in re-evaluating the data, the researchers determined that the patients could do more for only 4-10 days, and after that, the patients could actually do less. http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0511A&L=CO-CURE&P=R283&I=-3 This, again, simply validates as truth what patients have been saying for years: we can push ourselves for a few days (for example, to attend a CFS conference and tell the researchers face-to-face whatwe’ve been experiencing), but after that, our conserved resources are drained and we relapse.
Time and again, research has proved what the patients are reporting is true, even that which is considered by the professionals to be "impossible".
Remember, before the Wright Brothers, it was commonly accepted that it was impossible for man to fly. What scientists believe to be "impossible" is not always as implausible as it sounds.
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