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Time for the Big Talk. How's the CAA doing?

MEKoan

Senior Member
Messages
2,630
In the meantime, I strongly believe that CAA should totally represent the experience, viewpoints and knowledge of patients when they are not consistent with those of others (including doctors). This is the mandate of a patient advocacy organization.

Brilliant.
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
...Just what is going on here? We all know that the most helpful thing for us is to be told is to do less than we fell we can do. To have someone affirm what we feel ourselves. Are we all numbskulls and unable to sense for ourselves when our bodies are ready to `decondition`? Holding myself back has always been my problem. Good posts Dr Yes.

[slanderous comment removed]

[slanderous comment removed]

It was a sarcastic but innocuous comment about what "Phoenix Rising" means- not slanderous; look up slander. The false statement "[slanderous comment removed]", made anonymously by a moderator or Cort, is itself the only slanderous one that was made.

Kind of like when the Anti-Defamation League here in Colorado was sued for defamation and lost. True story.
 

Wayne

Senior Member
Messages
4,300
Location
Ashland, Oregon
Exercise

Patients should be advised to rest and save energy as much as possible and avoid all exercise programmes. As they feel better they will naturally increase their activity levels as the vast majority of patients are desperate to do more.

Hi Mithriel,

I would agree with what you say above. A question I have: "Isn't your reference to "naturally increase their activity levels" referring to exercise?

Perhaps I'm not differentiating between some kind of formalized exercise program, and other normal physical activity associated with everyday living. I tend to consider any physical activity as exercise.

I don't have the energy to go back and look over all the semantics of this discussion, but it seems some of the differences have to do more with semantics, and less on actual disagreement regarding core principles of exercise (or physical activity) for PWCs.

Best, Wayne
 

Cort

Phoenix Rising Founder
inon the news
Hey Cort, how are you doing? Been feeling a little under siege recently? BTW, I don't feel you ever once indicated a person should exercise when they can't, or should push themselves beyond the limitations they may be experiencing at any given time. I feel the quotes you posted very clearly enunciated these principles.

Seems any kind of exercise, like most other things in our lives, requires a delicate balancing act. It also seems there's almost always some kind of silver lining in all things however.

What a breath of fresh air. Thank you Wayne

Some people have noticed I've removed some slanderous comments about me - about Phoenix Rising is about rising from deconditioning and how I propose that CBT will cure CFS. You may think that's heavy handed but I consider it, considering what I spent my time doing, slander and I'm not going to leave it up there. Of course, feel free to critique, as always, whatever I post - I know that's not going to stop :)
 

Dolphin

Senior Member
Messages
17,567
Article on the envelope theory from the CFIDS Chronicle

This is in more formal language to the CFIDS Chronicle article on pacing. Unfortunately, I can't find it on the CAA website

Think INSIDE the envelope

In a demonstration of, the envelope theory, one PWC raised his energy level
and lowered fatigue by carefully controlling his activity.
---------------------------------------------------------------------------
From: THE CFIDS CHRONICLE * FALL 1997

Managing chronic fatigue syndrome through behavioral monitoring of energy levels
and fatigue: A case study demonstration of the envelope theory.

By Caroline P. King, MA, Leonard A. Jason, PhD, Erin L. Frankenberry and Karen
M. Jordan, PhD, DePaul University, and Warren Tryon, PhD, Fordham University


Abstract:
---------

This study was conducted to explore the relationship between perceived levels of
energy, expended levels of energy and fatigue in a patient with chronic fatigue
syndrome (CFS). The envelope theory maintains that by keeping expended energy
levels within the envelope of perceived energy levels, persons with CFS can
prevent relapses and possibly increase their energy levels. A case study is
presented to illustrate how fluctuations in fatigue are related to activity
levels, energy levels and affective mood states. Implications for illness
management and the benefits of this approach are discussed.

Full text at:
http://www.me-cvs.nl/index.php?pageid=3625
 

Cort

Phoenix Rising Founder
I had some tests done which showed that no energy at all was being produced in my cells. If I listened to Cort`s doctors I would have damaged my organs by using the energy they needed to fuction. Things have changed for me through a drastic change in my diet and now energy is being produced and I am exercising but this is only because my body is in healing mode and I think that excercise is dangerous otherwise.

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.
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
inon the news

What a breath of fresh air. Thank you Wayne

Some people have noticed I've removed some slanderous comments about me - about Phoenix Rising is about rising from deconditioning and how I propose that CBT will cure CFS. You may think that's heavy handed but I consider it, considering what I spent my time doing, slander and I'm not going to leave it up there. Of course, feel free to critique, as always, whatever I post - I know that's not going to stop :)

Cort,

I realize that writing removes the context of body language and vocal tone and I didn't put a smiley face after my comment, but my comment was obviously intended to be sarcastic and so was Brenda's. Noone, except you apparently, would ever think or believe that I was seriously saying that the actual meaning of Phoenix Rising is 'rising from the ashes of deconditioning.'
 

Wayne

Senior Member
Messages
4,300
Location
Ashland, Oregon
Cort, None, except you apparently, would ever think or believe that I was seriously saying that the actual meaning of Phoenix Rising is 'rising from the ashes of deconditioning.'

Hi Justinreilly,

I only just started reading on this thread today, and I had no idea you, Brenda, and perhaps others weren't totally serious about the posts that have been made. I pretty much took everybody's words at their face value.

Wayne
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
Hi Justinreilly,

I only just started reading on this thread today, and I had no idea you, Brenda, and perhaps others weren't totally serious about the posts that have been made. I pretty much took everybody's words at their face value.

Wayne

OK; to clarify, Phoenix Rising Forum is not all about recovering from deconditioning. I thought this would be obvious.
 

starryeyes

Senior Member
Messages
1,558
Location
Bay Area, California
This is in more formal language to the CFIDS Chronicle article on pacing. Unfortunately, I can't find it on the CAA website
Full text at:
http://www.me-cvs.nl/index.php?pageid=3625&printlink=true&highlight=fatigue

Tom, thank you very much for all your informative posts and helpful links. I'm copying these links to help us work on the CAA Materials committee.

It's very telling that you can't find this at the CAA website. It looks like they disagree with this kind of information that's actually helpful to PWC.
 

starryeyes

Senior Member
Messages
1,558
Location
Bay Area, California
This is in more formal language to the CFIDS Chronicle article on pacing. Unfortunately, I can't find it on the CAA website
Full text at:
http://www.me-cvs.nl/index.php?pageid=3625&printlink=true&highlight=fatigue

Tom, thank you very much for all your informative posts and helpful links. I'm copying these links to help us work on the CAA Materials committee.

It's very telling that you can no longer find this at the CAA website when it seems to be materials they created in the past. It looks like they disagree with this kind of information now that may actually be helpful to PWC. I plan to look at it more closely later.

~~~~~~~~~~~~~~~~~~~~~~~~

Justin, I have to say, it wasn't obvious that you were joking to me either plus, I don't think that's something we should be joking about. I think Cort is right for taking those comments down and I'm glad to see that you weren't serious.

I really admire Cort for allowing us to have these kinds of debates and discussions on Phoenix Rising. I've never seen a CFS forum that allowed this and I'm really grateful for this place and the way it's being run.

:hug: ((((Group Hug)))) :hug:
 

Cort

Phoenix Rising Founder
it is
Cort,

I realize that writing removes the context of body language and vocal tone and I didn't put a smiley face after my comment, but my comment was obviously intended to be sarcastic and so was Brenda's. Noone, except you apparently, would ever think or believe that I was seriously saying that the actual meaning of Phoenix Rising is 'rising from the ashes of deconditioning.'

My apologies then Justin - no harm intended - no offense taken.
 

Dr. Yes

Shame on You
Messages
868
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."
 

gracenote

All shall be well . . .
Messages
1,537
Location
Santa Rosa, CA
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.

Who are the they that you speak of here? It couldn't be the doctors who are just learning about ME/CFS by going through this online course. Because there is no way for you to know that these doctors "absolutely wouldn't ask you to" exercise. Or for you to assume that "that's what they would have recommended."

I think that is why many of us here are so concerned. We can't "assume" that these doctors will now understand that ME/CFS is NOT LIKE the other illnesses they have encountered. And from the many, many patients here who are telling of their experiences with countless doctors, it would be safer to assume otherwise.
 

MEKoan

Senior Member
Messages
2,630
Yes, Cort, truly, who are they?

Cort said:
So if you couldn't exercise without getting worse -and it sounds you couldn't then they absolutely wouldn't ask you to.

And how can you make this assertion about them with such confidence?

I don't believe you give any credence to what we are saying. It seems you dismiss us out of hand. Do you think about what we are trying to explain? Why can't you consider there may well be some merit to what we have been saying?

It is so dispiriting.
 

Dr. Yes

Shame on You
Messages
868
I don't believe you give any credence to what we are saying. It seems you dismiss us out of hand. Do you think about what we are trying to explain? Why can't you consider there may well be some merit to what we have been saying?

It is so dispiriting.

Ditto for me. But it is far more dispiriting that this is the CAA's attitude as well.
 

Wayne

Senior Member
Messages
4,300
Location
Ashland, Oregon
CAA

I don't believe you give any credence to what we are saying. It seems you dismiss us out of hand. Do you think about what we are trying to explain? Why can't you consider there may well be some merit to what we have been saying?

It is so dispiriting.

Dear Koan,

I have to say, I'm feeling fairly perplexed by what I've been reading on this thread. When I first started reading this morning, I was amazed at how upset people were with Cort. Unless I didn't go back far enough, I thought Cort was actually saying some pretty reasonable things.

I also thought Cort was responding to some of the posts here in a pretty polite manner, especially given that some of the posts directed toward him seemed fairly antagonistic. I just don't see that Cort has not been giving credence to what you're saying, and I also don't get the impression he's dismissing people out of hand.

I'm not sure why I'm seeing some of these things so much differently than many others here. It's really quite puzzling to me. As I said in a previous post, I don't get the impression that there's much difference in perspective between Cort and what many of you are stating here. It may just be a matter of semantics.

Regarding the CAA publication, I've not read it, but as with all publications (I used to work in publishing), there's always modifications that can be made to make a better product. I would hope that a constructive dialogue could take place between CAA and those who would like to have things worded differently. Has anybody attempted to contact CAA and try to work out some kind of arrangement? I would think they would appreciate the input and passion that many here feel.

Warm Regards Koan,

Wayne
 
G

Gerwyn

Guest
Ditto for me. But it is far more dispiriting that this is the CAA's attitude as well.

The best thing about the CME is that no one is likely to read it at all

Science clearly proves that information is internally represented in accordance with the contents of internal cognitive content and not the content of what is recieved.

There are hundreds of papers on the subject. I would have thought that the CAA could have found time to read at least one of them

This is why professional organisations either don't commununicate in this manner at all, or reduce the communication to sound bites or one side of A4.

There are specific techniques which have been developed to communicate with members of the medical profession

The CDC have, very cleverly, realised this and are marketing their message aggressively to the people who really count namely key opinion leaders within the medical profession.

If a commercial company engaged in such amateurish communication methods it would end up facing a winding up order or its directors would be removed by angry shareholders

Science shows that the CME cannot provide any bebefit to people with ME and also shows that it could do great harm despite the good intentions of the people involved in its construction
 

gracenote

All shall be well . . .
Messages
1,537
Location
Santa Rosa, CA
Wayne,

It really isn't just a matter of semantics. This dialog goes back pages and pages. Very few posters have been personally antagonistic towards Cort. Many have shared personal experiences and cautions which seem not to be heard no matter how often or carefully they have expressed them. It is dispiriting. I commend all of you who continue to try. Thank you. I'm learning a lot.