Please remember that the CME states that exercise can be very damaging to CFS patients and that patients should not exercise to the extent that they ncrease their symptoms. So if you couldn't exercise without getting worse -and it sounds you couldn't then they absolutely wouldn't ask you to. For very ill patients they simply talked about 'range of motion' exercises such as moving your arms up and down and grasping things. I assume that's what they would have reccommended to you - hopefully those 'exercises' would not have caused you organ damage.
But if she (Brenda) was at a state where any exercise would have been damaging, according to the above argument she could only find this out by exercising in the first place! That is, as I put in bold above, she would come to this realization only if she tried to exercise and it made her worse. But if one was in a condition where any 'exercise' that was too much would be damaging, even
that attempt would be unsafe.
Furthermore, you took that bit of the CME out of context:
A subset of people with CFS are so severely ill that they are largely housebound or bedbound. They require special attention, including a modified approach to exercise. Hand stretches and picking up and grasping objects may be all that can be managed at first. Gradually increasing activity to the point that patients can handle essential activities of daily living -- getting up, personal hygiene, and dressing -- is the next step.
Focusing on improving flexibility and minimizing the impact of deconditioning so patients can increase function enough to manage basic activities is the goal with severely ill patients.
As you can see, the grasping and so on is just the 'first step'; after that the recommendation is to increase activity to the point of essential ADL's. What on earth makes them think a severely ill ME patient can "recover" to that level simply by graded activity?? What are they talking about?? Patients aren't bedridden by their deconditioning -
which would be the only way to explain the improvement to that higher level by graded activity alone - they are bedridden by the
primary disease mechanisms of ME/CFS. (Deconditioning is a
secondary effect of any disabling disease). Obviously the author of this section didn't understand this basic concept.
Being able to handle our own ADL's is a dream for so many of those of us with severe ME/CFS. Believe me, it is humiliating having to be "bathed", or fed, or have your food cut up for you, or helped to walk a few steps to the bathroom. If anything, at all but my worst, I constantly pushed to do things myself to avoid the feelings of shame or helplessness that come with that, but always paid heavily for it. Like Robin described earlier, when I improved it was very sudden, unrelated to any exercise. When I later couldn't sustain the improved levels or crashed, it was sudden; in the former case it really felt like I had been cruising along carefully and then ran right into a wall. There was no more "forward" or "up". And at the same time I noticed I couldn't continue even what I was doing without sacrificing something else (like sitting up to eat lunch). None of this had anything to do with deconditioning, and no graded activity approach could fix it (I tried anyway). It appears that this is the experience being related most frequently on this forum and elsewhere among moderately to severely affected people.
A doctor reading that section of the CME could easily conclude that the severely ill patient is in this state due to prolonged immobility and deconditioning and should be capable, eventually, through carefully graded activity, to reach a certain level of self-care (ADL's - activities of daily living, btw). That, of course, would be
WRONG. And there is no indication in that section that this might very well be impossible and in fact dangerous for many of these patients. So what's that doctor going to think? Especially when he later reads this:
Some patients become fearful that any exertion will trigger symptoms (kinesophobia), and thus become couch- or bedbound. This, however, only leads to stiffness, soreness, and severe deconditioning. Such individuals are encouraged to initiate a progressive program of stretches and range-of-motion activities and then add low-level physical activities like short walks or floating in a pool.
OK, I will hope for the moment that all of us, including Cort, agree that this is
complete and utter bullsh*t, so I will return to the perspective of the average doctor again. He has read the previous stuff, then comes upon the above (which follows immediately after a mild case study), from which it is possible to conclude that "couchbound or bedbound" patients either all have 'kinesiophobia', or that some do (obviously a significant proportion, such that it was worth mentioning at this relative length within the CME). The context of the statement is unclear enough that the former could be the conclusion if the Joe Doctor in question isn't very smart, or is already biased in that direction (or both). But even if only the latter is the conclusion, the damage done to the doctor's perspective on the patient's severe disability is obvious. Even a smart doctor should not have this terrible misinformation about 'kinesiophobia' put in his/her head. It is at least likely to further distort the view that was already being distorted by the passage I quoted previously.
It is not reasonable to expect that a doctor will read this section and counter it with quotes selectively pulled from elsewhere in the CME for the very purpose of countering it, as you keep doing, Cort.
A point on logic, before I go. I have noticed the repeated argument that "doctors will read this and understand properly" based apparently on no data, and another that "I have had no bad experiences with doctors" (implying that the prevalence of bad experiences could be mitigated by a single person's experience). Both of these arguments are on poor logical footing to begin with, but to advance them in the face of many, many testimonials to the contrary is not logical in the least. It is akin to someone saying "I have never been a victim of a crime in my neighborhood, therefore my neighborhood is safe" (or at least has a low crime rate), despite having read story after story in the newspaper about crimes in his/her neighborhood. The correct conclusion would be "I am quite fortunate not to have been a victim of a crime, as I live in a high-crime neighborhood."