Hi Shane and Tom K.,
I want to address the general issue of reliance on clinicians for our understanding of this disease; I am using Dr. Bateman mainly as an example rather than the main focus in most of this post. There is an uncomfortable amount of what is almost deification of medical professionals in many quarters which is not healthy. There are a number of reasons why the CAA should not be adopting the attitude it has in relying for input in the CME, etc upon medical 'experts' with vast 'experience' to the exclusion of the ME/CFS patient base - which has more experience with the disease collectively than any two or three or twenty doctors put together.
I am sure that working in a patient organization broadens one's experience. I'm not sure that it is the same as seeing 20 patients a day and having a case load of hundreds.
As for Dr. Bateman's view of exercise, she'd have to speak for herself but I know that she encourages the most disabled of her patients to try and at least do some stretching to help stave off the worst effects of inactivity.
A doctor has a very different perspective on illness than any patient. No matter how many patients, or how broad a range, Dr. Bateman has seen, it doesn't mean she (or any other CFS specialist) truly understands what her patients have been telling her. A doctor approaches the patient with a set of practical clinical guidelines that inform her/his interpretations. This is meant to maximize the effectiveness of a necessarily brief analysis and therefore of treatment. There have, however, been volumes published that debate the positives and negatives of this protocol of interaction. How much real understanding of a patient and their condition can be garnered in this way, especially if the disease is a mysterious one? How effective can patients be in reporting symptoms in such cases? How much do disease definitions affect a clinician's perceptions of a disease or group of diseases? How can one properly evaluate and - especially - generalize the effectiveness of treatments?
None of the doctors in question here are also patients. Not even moderate-to-high functioning patients. There is only so much a healthy person can understand from speaking to a patient in the unusual context of a doctor's interview and in the unnatural environment of a doctor's office. Dr. Bateman doubtless was familiar with another dimension from having a PWC as a family member. However, that does not necessarily mean she understands the disease fully, no more so than my mother or father (who was also a doctor) did.
Ultimately, there is a disconnect between physician and patient that results in an informational divide. That is where a patient advocacy group assumes great significance and responsibility. To rely on doctors exclusively for treatment advice (let alone all else) is a major mistake - especially in a disease like this one, and especially if you are only talking about a couple of doctors. If you ask Cheney or Byron Hyde, you would get a completely different, often contradictory, recommendation on exercise from the one you'd get from Bateman and Klimas (or Lapp). I don't see how, even if you restrict yourself to physician advice, you should limit that advice to one perspective at the expense of another equally (if not more) valid one.
Doctors are also human beings. Human beings are flawed. If you restrict your inputs for a set of recommendations to a few human beings, you are grossly narrowing your range of interpretation. The more the better. And, as I said, you would still be missing the vast majority of experience - patients. Doctors' experiences are not equal to or greater than the sum total of those of the patients they have seen. Very often they are unaware of or neglect, in favor of their own biases or constructs, issues of MAJOR importance to a majority of patients. The recommendations of clinicians MUST be complemented by the recommendations of patients, especially in the literature and physician training materials of a patient advocacy group.
I am shocked that any patient would argue otherwise if s/he has really experienced (1) what this disease can do, (2) the limitations of our best clinicians, and (3) the grotesque limitations of most other clinicians and our medical establishments as a whole. [Shane- I don't think this comment applies to you]
As for the issue of activity/exercise specific to Dr. Bateman... I have read her essay on the "Exercise Conundrum" and other statements she has provided. Not bad for moderate to high functioning PWC who are not at risk of sudden relapse. But that's just the thing - her approach doesn't adequately address that reality. I am referring to the abrupt and long-term collapse that even seemingly 'small' amounts of exercise (usually graded) can trigger, unpredictably, in PWC. It happens often enough that it cannot be regarded as anomalous - on the contrary, it must be factored in as a significant risk. That calls for closer physiological and biochemical monitoring of patients during any proposed exercise regime.
Very few clinicians get to see the severely ill (e.g. bedridden or almost bedridden) patients for the simple reason that such patients cannot safely make a trip to see a doctor (especially one who may be in another state). Yet they often are under the false impression that they have. If Dr. Bateman actually encourages the 'most disabled' of her patients to try and at least do some 'stretching', she is not seeing the most disabled patients, who often cannot do even simple stretching exercises. Unless she is aware of this fact, she is not qualified to generalize about the needs and treatment of severely ill patients. To hear from a clinician who appears to be, turn to Dr. Hyde, Dr. Cheney, or (perhaps) Dr. Peterson.
How can patient experience be accurately tapped? For starters, as Tom K. mentioned, there's always the more local or grassroots patient support and/or advocacy groups that distill information and experiences reasonably well, and more importantly can contact their bases and organize information that is broadly agreed upon by the majority of patients involved. The CAA is in a good position to do the same... and should do it. But they need people like many on this forum as a think-tank. I do not think there will be any shortage of volunteers for an equal collaboration.