:Retro smile:
Peter White was very close to Bill Reeves in the CDC - fingers crossed he loses his influence.
I think you missed the point. While saying that, for example, 'vigorous' exercise is potentially harmful, and even subtler points, the CME at the same time recommends exercise as a functionally restorative therapy, suggests that patients may well not be doing enough activity, recommends graded activity or exercise, and recommends gradually increasing activity even for severely ill patients without the warning that for some gradual increase of any kind, or even unnecessary activity beyond what is physiologically monitored as appropriate, is contraindicated for many of these patients. Don't forget - for low functioning patients 'activity' means
First of all, WOW. Chill, Cort! About a dozen people on this thread and a few dozen on others have suggested the same things and you didn't go "China Syndrome" on them! So merely suggesting something you feel is incorrect about the CME (it's an inanimate cyberspace object, not a person with feelings) is considered "a HUGE injustice" to YOU, personally?? (Re-read your sentence there. That's actually what you wrote!) And the alternative you offer is that merely suggesting something you feel is incorrect about your position is also a "HUGE" injustice to you. By that definition, Cort, you have done me and many other posters on this forum HUGE injustices at various times by suggesting that we hold positions that we absolutely, vehemently do NOT. On this thread alone, in the last few days, you have alienated several posters who have complained to me about your 'attacks', as some called them, in which you totally missed the point of their posts and accused them of holding a very different position - an opposite one - from those they had. I saw a few examples, but had decided in the interests of peace and quiet not to PM you about them, post about them or try reporting them. But here you have gone WAY too far, and someone has to call you on it, and no one else wants to.. so I guess the dude with the oxygen mask and an attitude has to!
you were supposed to carry this logic through the whole post , to my own experiences with doctors. Had you done that, I think you would have seen that I was trying to answer for Tom (who I agree with) that the CAA should not recommend any exercise or graded activity programs to physicians, NOT just because they are potentially harmful (which is where you stopped following what I was saying), but because any mentions of exercise or graded activity automatically prompt a majority of healthcare professionals to misleading ideas (usually stemming from preconceptions) about the nature of ME/CFS and distort their already easily distorted views of us and how to treat us. Enough people have already made this point to you, so I won't re-hash it. If you ask the same questions again and again, it is silly to criticize those who exasperatedly try to explain it, yet again, for 'beating a dead horse' or 'going over the same arguments again and again'.
If you are referring to the CME, then yes, I have read every section you have posted before you posted them, multiple times. As have many others here, who are some of our most knowledgeable advocates in the matter of exercise and ME/CFS, whose positions are identical to mine. There is too much in the CME that will lead too many health professionals directly to wrong conclusions about patients and exercise/activity. The worst is the "avoidance activity"/ kinesiophobia psychobabble. That is not only scientifically invalid and horribly unfair, but it is the last thing in the world you want to tell doctors if you expect them to heed "warnings" of the kind you refer to. Plus, as we keep having to tell you, the exercise stuff is unnecessary and in fact only encourages the common stupidities that many PWC have to endure.
(by the way, I really meant 'hombre' in a casual, friendly way. I say it all the time. I was trying to be casual and friendly. I am a casual and friendly guy. I thought you were, too, but I suppose a lot gets lost in internet communication. I thought by now you knew my personality well enough, though! People around here say you have no sense of humor, but I don't believe it. You're just very, very sensitive, and I will remember that.)
It sounds like you are willing that to be true! That is the most optimistic thing I have read in some time.
Unfortunately, it is your opinion alone, based on what must be a limited or fortunate experience of standard (non-specialist) health professionals and clinicians, of whom I have (sadly) all too much real experience. I wish you were right, but that is wishful thinking.By the way, in your original post that I responded to you were not talking about the CME alone... but if that's all we are talking about, see above.
Perhaps "sensitive" was not the right word, because this comment is just bizarre. This is the program that I and - how many others, from different continents? - have spent a lot of effort protesting about and then trying to organize some effort to correct, motivated by just how WRONG it was. You are in a minority of about one on this issue here, Cort, and you are well aware of that (those 30 something posts weren't directed at me) yet you singled me out for this comment. It would be more appopriate to say: "to all the forum members who have posted their criticisms of the CME and their personal, very painful negative experiences with some of the ideas propagated in it, I have this to say....". Instead, you favored a personal attack. I think that was doing me, and all of us by extension, a huge injustice - and I am not mocking you by repeating your words; I really mean it.
Who says you don't have a sense of humor?
[*note - that was an attempt at humor*]Okay, not cool. That comment implies underhanded motive and intent behind what I wrote. I believe that is a violation of Forum Rules. If it's not, it should be. It is unfair to me and unhealthy for this forum. I believe you should hold yourself to the same standards as other members, if you want us to feel like equal citizens of this community (which seems to be your vision as well). I would therefore appreciate an apology. You were very gracious in your last one. If you understand the need for this, you may reply privately or publicly. I prefer to talk one on one, where I am at my best. But since it has become public, maybe its better to air things out in public. The "CAA and Forum Debate: Double Standards?" thread that I had requested Kurt to start after that 'satire' nonsense was to address this very issue, among other things; I would recommend any conversation on this issue be continued there. Do whatever you think is right. For my part, I already said in the post itself and above in the first paragraph what my intention was. I never imagined that this post would upset you; I actually ran it by one of the most polite people on this forum first (because I wondered if humor would be misunderstood yet again) and even she thought it was fine, and thought I made the points well. And she's smarter than you and me put together!
). So it is not like patients choose these options lightly. .
: Wheelchair/mobility scooter user :wheelchair:
Yes, and also as a wheelchair user himself Richard Bruno would not have the wheelchair (or physical aid) hang-ups so many medics have. He would understand that it could lead to greater mobility for patients and not less. A lot of doctors seem to have very negative, and sometimes very false, views of wheelchairs. It is almost like they see the wheelchair itself as disabling, instead of viewing the condition the person has as disabling, and the wheelchair as just an enabling device like a car.
I can understand that doctors want the patients to use their legs a little if they can (I am talking about patients in general, not ME/CFS patients), but for many not having a wheelchair is going to mean cutting out many social, and even practical, activities (or making oneself worse if you have to do an activity that involves too much walking). Some people use wheelchairs only for some activities.
I remember seeing a talk by Richard Bruno where I think he said that he even has to argue with patients a bit to use aids as they are so resistant to using them, even if he is saying they could help. (I just thought, a man after my own heart
Personally I think that many ME/CFS patients could benefit from (even occassional) use of certain devices, but there is going to be a problem getting any OT, Physio or doctor to recommend and approve devices so long as they keep hearing that exercise can improve functionality. Doctors etc. are already biased against wheelchairs so won't want to suggest them, and medicare or whoever will also not want to fund them, if you tell them exercise is going to improve function.
And not to be banging on about it but the CME does say this, even though there is no evidence for it. They say this about ME/CFS patients in general:
.
and the severe:
Orla
Declaration of interest
Okay, I had a doctor's appointment, a horrible day, and come back to this forum after what I thought would be a post even Cort would like and DAMN was I wrong.. and then I type a very strong response to his mini-diatribe and by the time I get done and field a few phone calls and blah blah blah, Roy S. has cleverly told us to lighten up (I thought that's what I was doing!) Now I feel bad about posting the stuff below, but I think it sets a worse precedent to allow this sort of thing to continue without comment (especially if it involves me, of course!).
Cort, this is the second time you have not only missed what MANY others found humorous about a genuine attempt to communicate by humor, but actually gotten angry at me personally and made remarkably unfair statements about my intentions. I know in both cases the issue is one you seem to have tremendous personal investment in - the CAA - but that does not excuse it. I wish instead of that you would PM me and ask me what I meant, as you found out last time that you overreacted as well. Or in any case. Talk to me personally before you make a public attack. I was clearly not trying to attack you but to explain something that you were going on and on about with Tom (who was having to make the same point repeatedly to you in as many ways as he could) and when I saw you say "I give up", then "I'm back" and "I just can't quit" or whatever, I laughed (even though I felt sick as a dog) and thought of a way I could answer your question in a way that would escape the dense rhetoric and come across as more amiable (yet still debating). I guess I failed miserably in your eyes. I have - once again - gotten a lot of supportive PM's and calls from people I hardly know (before even having read your reply), so I know I'm not the only one who has this opinion. But since it bothered you personally, and you made your comments public instead of talking to me directly, I will answer your points and try to put you at ease on some issues (and I hope you will do the same for me on others, as you gracefully did last time).
I think you missed the point. While saying that, for example, 'vigorous' exercise is potentially harmful, and even subtler points, the CME at the same time recommends exercise as a functionally restorative therapy, suggests that patients may well not be doing enough activity, recommends graded activity or exercise, and recommends gradually increasing activity even for severely ill patients without the warning that for some gradual increase of any kind, or even unnecessary activity beyond what is physiologically monitored as appropriate, is contraindicated for many of these patients. Don't forget - for low functioning patients 'activity' means
'exercise'.
First of all, WOW. Chill, Cort! About a dozen people on this thread and a few dozen on others have suggested the same things and you didn't go "China Syndrome" on them! So merely suggesting something you feel is incorrect about the CME (it's an inanimate cyberspace object, not a person with feelings) is considered "a HUGE injustice" to YOU, personally?? (Re-read your sentence there. That's actually what you wrote!) And the alternative you offer is that merely suggesting something you feel is incorrect about your position is also a "HUGE" injustice to you. By that definition, Cort, you have done me and many other posters on this forum HUGE injustices at various times by suggesting that we hold positions that we absolutely, vehemently do NOT. On this thread alone, in the last few days, you have alienated several posters who have complained to me about your 'attacks', as some called them, in which you totally missed the point of their posts and accused them of holding a very different position - an opposite one - from those they had. I saw a few examples, but had decided in the interests of peace and quiet not to PM you about them, post about them or try reporting them. But here you have gone WAY too far, and someone has to call you on it, and no one else wants to.. so I guess the dude with the oxygen mask and an attitude has to!
Now, the above argument was just a matter of principle, by which you were also wrong, but I also want to be understood clearly myself... because you actually misunderstood the comments that you took offense to (again).
Please stop taking comments out of context; it would again be helpful if you at least sent me a PM to ask my meaning if it troubles you before you post angrily (and you post angrily a LOT Cort, which is stressing out a lot of people who have spoken to me... a lot of them are afraid to post on the CAA threads and at least four have told me at various times that they won't post anymore because of how aggressively you respond... I think we should be able to report that to moderators, though I don't think anyone believes that will work). I suppose posting 22 times in less than a day on a single thread (there should be a forum rule against that, by the way) would make it easy to forget some of the things you say. Or you say them wrong. I'm sure I say things wrong too; perhaps I did in this case, but if so the right thing to do would be to send me a polite PM asking my meaning. Anyway, when you read the first part of what I said:
you were supposed to carry this logic through the whole post , to my own experiences with doctors. Had you done that, I think you would have seen that I was trying to answer for Tom (who I agree with) that the CAA should not recommend any exercise or graded activity programs to physicians, NOT just because they are potentially harmful (which is where you stopped following what I was saying), but because any mentions of exercise or graded activity automatically prompt a majority of healthcare professionals to misleading ideas (usually stemming from preconceptions) about the nature of ME/CFS and distort their already easily distorted views of us and how to treat us. Enough people have already made this point to you, so I won't re-hash it. If you ask the same questions again and again, it is silly to criticize those who exasperatedly try to explain it, yet again, for 'beating a dead horse' or 'going over the same arguments again and again'.
If you are referring to the CME, then yes, I have read every section you have posted before you posted them, multiple times. As have many others here, who are some of our most knowledgeable advocates in the matter of exercise and ME/CFS, whose positions are identical to mine. There is too much in the CME that will lead too many health professionals directly to wrong conclusions about patients and exercise/activity. The worst is the "avoidance activity"/ kinesiophobia psychobabble. That is not only scientifically invalid and horribly unfair, but it is the last thing in the world you want to tell doctors if you expect them to heed "warnings" of the kind you refer to. Plus, as we keep having to tell you, the exercise stuff is unnecessary and in fact only encourages the common stupidities that many PWC have to endure.
(by the way, I really meant 'hombre' in a casual, friendly way. I say it all the time. I was trying to be casual and friendly. I am a casual and friendly guy. I thought you were, too, but I suppose a lot gets lost in internet communication. I thought by now you knew my personality well enough, though! People around here say you have no sense of humor, but I don't believe it. You're just very, very sensitive, and I will remember that.)
It sounds like you are willing that to be true! That is the most optimistic thing I have read in some time.
By the way, in your original post that I responded to you were not talking about the CME alone... but if that's all we are talking about, see above.
Perhaps "sensitive" was not the right word, because this comment is just bizarre. This is the program that I and - how many others, from different continents? - have spent a lot of effort protesting about and then trying to organize some effort to correct, motivated by just how WRONG it was. You are in a minority of about one on this issue here, Cort, and you are well aware of that (those 30 something posts weren't directed at me) yet you singled me out for this comment. It would be more appopriate to say: "to all the forum members who have posted their criticisms of the CME and their personal, very painful negative experiences with some of the ideas propagated in it, I have this to say....". Instead, you favored a personal attack. I think that was doing me, and all of us by extension, a huge injustice - and I am not mocking you by repeating your words; I really mean it.
Who says you don't have a sense of humor?
Okay, not cool. That comment implies underhanded motive and intent behind what I wrote. I believe that is a violation of Forum Rules. If it's not, it should be. It is unfair to me and unhealthy for this forum. I believe you should hold yourself to the same standards as other members, if you want us to feel like equal citizens of this community (which seems to be your vision as well). I would therefore appreciate an apology. You were very gracious in your last one. If you understand the need for this, you may reply privately or publicly. I prefer to talk one on one, where I am at my best. But since it has become public, maybe its better to air things out in public. The "CAA and Forum Debate: Double Standards?" thread that I had requested Kurt to start after that 'satire' nonsense was to address this very issue, among other things; I would recommend any conversation on this issue be continued there. Do whatever you think is right. For my part, I already said in the post itself and above in the first paragraph what my intention was. I never imagined that this post would upset you; I actually ran it by one of the most polite people on this forum first (because I wondered if humor would be misunderstood yet again) and even she thought it was fine, and thought I made the points well. And she's smarter than you and me put together!
A sense of humor is a very useful thing, by the way, and utterly necessary when your body, your family, and your life have been torn apart.
(I still think you have one, by the way! But I do believe you are a bit too emotionally involved in all things CAA to always see clearly in such discussions.)
I hope that the hostility that was being directed at particular forum members by you and maybe one or two others is over for good (and that I haven't just re-ignited it!) Those of us on the other "side" (what side??), i.e. who Cort has disagreed with, were not disrespectful to him at all, and their "anger" was directed only at the misrepresentation of our disease by the CAA. Personally, I just wanted to get stuff done, and didn't want this thread sidetracked like it frequently is by the "everybody argue with Cort" thing. I had prepared a post before the last one to address those issues, and to ask for some constructive action. I hope I will still be able to, and I'm sorry if I had to add more tension to this thread, but it's no fun being misunderstood and angrily responded to like that, even in the best of health, and I am so many miles from that.
"The very definition of insanity is to keep doing the same thing over and over again, expecting different results."
YES!!!!Wait a minute now hombre, that statement is not clear. You use the word "experience" first to mean your "experience of reading" their programs, then use it to mean your "experience" = doctors will recognize that we can't do regular exercise. Are you saying that you have ACTUAL experience with doctors who have ACTUALLY read those VERY materials (CAA/Bateman) and they have ALL (how many doctors have you seen who read this stuff, anyway??) become enlightened as you described? Or are you using the term hypothetically (and incorrectly) to mean that you THINK doctors who read this will become so enlightened?
(Ding Ding Ding!!!!)
Finally, some progress!
Better late than never! Perhaps the 'dead' horse still lives.
Wait...uh oh...
I don't have to show you anything, for the answer lies curled within your own question. Tom wasn't merely saying that he doesn't "like" the idea of any kind of exercise program being included, I believe he was saying NO exercise program should be included because ANY exercise program is potentially HARMFUL to many patients! Yes, EVEN Dr. Bateman's! As you have (I Dearly Hope) read in countless testimonials from your fellow companions in Disease, many of them less fortunate in overall condition, ANY FORM OF EXERCISE, or of GRADED ANYTHING, can potentially be harmful, ESPECIALLY for the severely affected (and there are a lot of us Cort; you and I seem to move - well you move, I just lie down - in different circles...).
I'm fairly confident that Dr. Bateman herself would not apply a general recommendation like that to a patient like say, yours truly (I hope not anyway..:worried
My experience with doctors has been bad enough (did I mention Joe?) that most of them wouldn't even read the CAA literature anyway, and even if they did they would see the words "graded" or "gradual" + "increase" together with "activity" and "deconditioning", and then it's "ah yes, that's what I thought"... And the prescription is a graded kick in the ass with an assist by a psychologist or psychiatrist (prompted by the mention of "cognitive behavioral therapy"), with a general refusal to be very helpful (if at all) with disability forms, requests for wheelchairs, etc (why do I need, say, an electric wheelchair if I can gradually increase my activity such that, by God, I should at least be able to push one myself..). Now don't tell him he's missing the good stuff in that literature, Cort, or missing the nuance or the overall point, because he's a busy man, he has other patients to see, and he doesn't have time to read the fine print.. Besides, he already has his own framework built up from years of clinical experience, young man, and this document only reinforces his belief that all I need is a graded kick in the ass after all.. There's nothing in there about the SPECT scans or smoldering viruses or whatever I keep babbling about, and.. Oh, he's sorry, he has to see another patient now.
And that, in a bit of hopefully informative hopefully humor, is the problem. Most of us aren't beating any damn 'dead horses' here; we are fighting to NOT wind up about as dead as dead horses, wherever we can and however we can. Trouble is, some folks who will remain nameless (Cort and the CAA and.. who's that riding in?? Say it ain't so!!) seem to have developed a mental block in these discussions. So I thought I would try a different method. In the past I have found some of you folks have broken senses of humor, but I think it is a very effective medication and communication tool, in the right hands. Which rules me out.
Oh well. Spam away, Mr. J!
Yes, that is my view also.
