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

[Cloud]

For me Dr Myhill explains it so simply and so well.....

"Graded exercise

This is positively harmful when CFS is active. I find it quite extraordinary that so many doctors seem to advocate this as a treatment. It is as if they are unable to distinguish between CFS and lack of fitness! Let's face it, if graded exercise worked then the diagnosis could not possibly be CFS. The only possible explanation I can think of as to why this has stuck in the medical folklore is that after a physician has recommended this to the CFS patient, the latter never bothers to attend again for useless advice. The doctor then believes he has cured the patient because they don't come back. Has anybody else got any better explanation"?

http://drmyhill.co.uk/wiki/CFS_-_treatments_which_are_not_worth_trying

 

[CBS]

There was a significant period in my life after having acute onset CFS when my symptoms were significantly less pronounced (doing better than Cort is right now). FOR MYSELF, I feel that at that time completely avoiding all stretching and any exercise would have been detrimental. In fact, I feel that I'm doing better now for having been active to a level that did not exacerbate anything.

Today I am far worse off but not because of any pacing or normal activity. Much of my huge crash was because of circumstances that forced me to be far more active than I had intended (a contractor demolished essential portions of our house as part of a remodel and then disappeared). My wife ended up commuting a very long distance to a very stressful job while we were forced to live with relatives and in an effort to try and get back in the house and reduce stress on everyone, I tried doing some of the work myself. REALLY BAD IDEA!!!

Now, activity is often too much and exercise is completely out of the question. This is clearly a area that MUST be patient driven.

I can easily see both sides. I agree with Cort that there are individuals that would benefit from minimal activity and then there are others that can tolerate nothing.

CBT and GET are dangerous labels as they are anything but patient driven but I haven't ever seen Cort promote either. There are many things that the Canadian Consensus Criteria gets right and patient driven pacing is one of them (so long as it is understood that the patient gets to say NO to anything).

 

[Robyn]

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[Gerwyn]

Ok I have a question? My resting heat rate is always between 100 to 140. How will exercise affect this? Does anyone know? I walk around my office all day long. My heart rate at times has been 157 and at the highest 180. Just getting up and walking around will make it go up. The time it was 157 I was sitting in my doctor's office where she promptly sent me for an emergency ekg. All I had done was walked from my car into her office. I have attempted exercise regimes off and on for 15 years always starting at a slow pace. I have crashed every single time. What happens if one time my heart has just had enough? Can a doctor explain this?

hi Robyn,
Your resting heart rate is classified as dangerous if it carries on over 1 to 2 days.Excercise would be inadvisable without cardiologist input.

As for this next statement

* A strengthening and conditioning program can reduce pain, prevent muscle spasms, increase strength and flexibility, improve balance, reduce falls, and enhance stamina and function in CFS patients.[78] Low-level exercise, including stretching, strength training, and simple resistance training, appears to

be reasonably well tolerated by most patients, as long as they learn to avoid overexertion.

They have no scientific evidence to back this up and have no idea that this programme would be well tolerated by most patients.This programme would be overexertion for a great many patients.This is just speculation and heresay

 

[Cort]

Ok I have a question? My resting heat rate is always between 100 to 140. How will exercise affect this? Does anyone know? I walk around my office all day long. My heart rate at times has been 157 and at the highest 180. Just getting up and walking around will make it go up. The time it was 157 I was sitting in my doctor's office where she promptly sent me for an emergency ekg. All I had done was walked from my car into her office. I have attempted exercise regimes off and on for 15 years always starting at a slow pace. I have crashed every single time. What happens if one time my heart has just had enough? Can a doctor explain this?

Staci Stevens would give you a heart monitor and would tell you that when your heart rate reaches a certain level you should stop because you've crossed into aerobic functioning and your aerobic system is not working. She stated that her tests show that most people with CFS have to reduce their (already) low activity levels. Some peoples aerobic energy system is not working at all. In fact they're in negative territory simply in the process of staying alive. Other peoples aerobic energy systems work a little bit, some work a little bit more but many people with CFS have a substantial block in this area.

Yet Staci Stevens also created an exercise program for CFS patients. How to does that make sense? That's what I was trying to make sense of which created so much commotion. I specifically asked her if patients, by rigorously using her system, could expand their ability to tolerate aerobic exercise she said....and she said that some could. She didn't say that everybody could, she didn't say that they could engage in vigorous physical exercise, she said that some people could slowly expand their ability to tolerate aerobic exercise a bit. Obviously that means that other people cannot. now (She also said that nobody she knows has ever been cured of CFS). I don't see how this is different from the energy bank idea or pacing. this

I'm sorry if that doesn't fit with anybody's personal experience. It doesn't actually fit with my experience. (I can increase my endurance at exercise but my symptoms flare up and the rest of my life goes to pot). I've never had the discipline to to the kind of exacting monitoring that her approach requires and it and with may not work for me anyway. Staci Stevens, though, has had CFS for over 20 years. It is what she spends her time on - it is the focus of her research - and when she says something like that I accept it. It is not the graded exercise therapy for the past as are none of these since they all couched their recommendations within a framework that says STOP when your symptoms flare up.

I had a whole section on that in the article I did on her and she asked me to take it out because she had just lost her exercise physiologist but what she does is measure your with aerobic energy system starts to go yo-you when you exercise.

 

[jackie]

Cort...you want me to look at the programs more closely? as time has passed...i HAVE tried to learn how much energy i can expend - to the best of my ability. Sometimes i think i use my reserve of energy most days just lifting myself up and out of bed to make it to the bathroom...how can i choose whether to do THAT or do arm/hand/leg stretches?

When i became ill i was a normal, hardworking artist. I discovered that i could no longer practice art - could not sculpt, paint at an easel, even draw for any length of time. so...I took up something creative i could do resting in bed or sitting on a couch...I tried hand-sewing quilts (slowly, of course. there is a photo of one of the quilts that i sewed on my photo page here. Made entirely by hand with the smallest of needles...thousands and thousands of the tiniest perfect stitches...this is what I could do at the start of my illness)

When I reached a point where I could no longer sew more than a few stitches at a time (and no one was more "amazed" than me that i could REACH a point where i was ONLY capable of a few stitches!)...i "took up" knitting. Now i can no longer knit more than a few stitches at a time without resting - sometimes for hours at a time....usually i just give up and stop.

I can still type on this forum (right fingers only - when i started here last summer i could use both hands - i wonder when people say this is not progressive)...and am nearing the point where I will switch to a voice recognition program (due to the pain/weakness in my arms/hands). All three of my doctors know this...BUT, "am i exercising?" is one of the first three standard questions I'm still asked when I'm taken for my appointments. They "wish" I could. "Can you go swimming?"...one gently asked me.

(btw...Gerwyn, my husband is such a compassionate and caring man, and he understands this disease as much as anyone without it can...but I had him read YOUR description and that said more to him than anything I could say! We both wept.)

 

[CBS]

Yet Staci Stevens also created an exercise program for CFS patients. How to does that make sense? That's what I was trying to make sense of which created so much commotion. I specifically asked her if patients, by rigorously using her system, could expand their ability to tolerate aerobic exercise she said....and she said that some could. She didn't say that everybody could, she didn't say that they could engage in vigorous physical exercise, she said that some people could slowly expand their ability to tolerate aerobic exercise a bit. Obviously that means that other people cannot. now (She also said that nobody she knows has ever been cured of CFS). I don't see how this is different from the energy bank idea or pacing. this

I'm sorry if that doesn't fit with anybody's personal experience. It doesn't actually fit with my experience. (I can increase my endurance at exercise but my symptoms flare up and the rest of my life goes to pot). I've never had the discipline to to the kind of exacting monitoring that her approach requires and it and with may not work for me anyway. Staci Stevens, though, has had CFS for over 20 years. It is what she spends her time on - it is the focus of her research - and when she says something like that I accept it. It is not the graded exercise therapy for the past as are none of these since they all couched their recommendations within a framework that says STOP when your symptoms flare up.

I had a whole section on that in the article I did on her and she asked me to take it out because she had just lost her exercise physiologist but what she does is measure your with aerobic energy system starts to go yo-you when you exercise.

I would say that for a period my experience was not far from what Staci describes (before getting sick I was an endurance cyclist - 200 miles in a day at race pace (10 hours?) over 8000-9000 foot passes was not unheard of for me). Some years after getting sick I found that long walks/easy hikes with the dog actually helped.

Again, it is clear to me that this had nothing to do with my subsequent crash.

As for counseling, I have never met a CFS patient that needed to be told to do more. My experience had universally been the exact opposite. If anything, as a group we need to be told how to recognize when we are doing to much and then give ourselves permission to rest.

 

[Cort]

All these programs focus on avoiding the push crash phenomenon; that is doing levels of activity that exacerbate your symptoms. These quotes are from the CME.

I think just the mention of 'exercise programs' is very offputting because everybody would love to exercise again! I would do anything to be able to exercise again! I was an ardent exerciser. And the simple fact that the programs are there somehow suggests that we don't want to. I get that. Its kind of demeaning looking at them.

What I think the programs are trying to do is manage a very touchy situation - an aerobic system that hardly works at all - and, of course, their benefits are very limited.

As time passes, patients learn how much energy they can expend without experiencing the characteristic postexertional malaise.[77]

You can say that yes, if everyone naturally comes to the spot but I would disagree with that. Everyone reduces their activities but many people, myself included, overdo their activity levels for whatever reason - from necessity, from desire to get things accomplished, from desire to do things - and they stay stuck in what I would call a 'overly symptomatic state'; ie they feel worse than they would if they to did. My revelation was not that I would get well if I reduce my physical activity levels even more on but that I would feel quite a bit better.

Instruct patients to return to the most recent manageable level of activity if they report that exercise is worsening symptoms

I agree, on the face of it, that its a very weird treatment recommendation for CFS!

 

[CBS]

Does Dr Bateman make home visits.Patients with severe ME and bicycles.They would be lucky to recognise a bicycle!

I'll ask her if she does home visits. It would not surprise me in the least to find out that she does. As for the exercise study, I have met some of the participants and believe me, they are far from hail and hearty. Some have trouble just getting from the car to the office. It was a huge sacrifice for these people to participate and Dr. Bateman has repeatedly stated her appreciation of how hard and how much of a sacrifice this was for those who could and did participate.

 

[Gerwyn]

I would say that for a period my experience was not far from what Staci describes (before getting sick I was an endurance cyclist - 200 miles in a day at race pace (10 hours?) over 8000-9000 foot passes was not unheard of for me). Some years after getting sick I found that long walks/easy hikes with the dog actually helped.

Again, it is clear to me that this had nothing to do with my subsequent crash.

As for counseling, I have never met a CFS patient that needed to be told to do more. My experience had universally been the exact opposite. If anything, as a group we need to be told how to recognize when we are doing to much and then give ourselves permission to rest.

I would have loved to have done more but I could not even climb one stair.two stairs would have been a 100% improvement but I could not do it however hard i tried and believe me I tried!

 

[CBS]

I would have loved to have done more but I could not even climb one stair.two stairs would have been a 100% improvement but I could not do it however hard i tried and believe me I tried!

Gerwyn,

As one who has crawled from the car to the house following a doctors visit that required a dangerous amount of activity (I should have used a wheelchair) I would say from your description that you tried too hard and you shouldn't have to justify not attempting to climb any stairs. Again, to a person I think that what have lost is so painful we are inclined to deny limitations and do too much with the slightest reprieve from the worst symptoms of a crash.

 

[Cort]

From the CME by Dr. Bateman, Dr. Lapp and the CAA

http://cme.medscape.com/viewarticle/581527_8

most healthcare professionals have grossly misunderstood the level of exercise CFS patients can tolerate. Both experience and scientific studies have shown that people with CFS have an extremely limited ability to exert, and overexertion triggers an exacerbation of symptoms that may last for hours to weeks. The best approach is to develop a highly individualized activity plan that incorporates pacing, stretching, physical conditioning, and light aerobic activity. Clinicians should not recommend traditional exercise regimens. Activity plans and therapies should be focused on meeting activities of daily living and improving function.

CFS patients are advised to balance any activity with rest and to "experiment" with the level of activity that is tolerated to find their own personal threshold of activity. In most cases, this will be extremely low. Using a pedometer may help to establish limits. CFS patients are generally limited to 1000 to 5000 steps per day, while normal healthy individuals frequently take 5000-10,000 steps per day.[86]

These are very limited recommendation; they're about maintaining whatever health one can within the limits of a very debilitating illness - not about getting well. These are not the CBT/GET programs of yesteryear.

 

[Cort]

We need the same kind of medical intervention, exercise is not the miracle cure. We need to find what is causing this. When that happens we will again be able to exercise. Hopefully!

I agree completely. As I noted earlier I was an avid exerciser before I came down with ME/CFS. I enjoyed my body immensely. I engaged in many sports. I had a strong and healthy body. I took care of it well. How it all fell apart is the great mystery of my life.

With regards to my 'endorsement' of the Amygdala retraining program that someone posted earlier, if you take the time to do read my blog on it you'll discover that what it did or does is improve my quality of life. It has in no way been a cure for me; it has not increased my ability to tolerate exercise or my ability to function. What it has done is focused my attention on the effects activity levels, the activities that I do and my reactions to virtually everything in my life, have on my well-being. I appreciate anything that helps with my quality of life.

This is another tricky arena that I've gotten myself into and I've seen several people on the Internet state that I am a Wessley advocate because I've gotten some positive results from this protocol. What's its shown to should me is that my system is kind of on a knife's edge - that its overreacting to everything - that its basically being overloaded by even the most innocuous events. Before I did it this was difficult to tell because my body seemed to be kind of 'locked up'. Once I reduced my activity levels I was able to see for the first time that it was.

It has not been anywhere near a cure for me. I have never stated it was and I would appreciate if when people connect me with that program that they would not represent that that is so. I do not believe there is a mind-body cure for me. I believe my CFS is a physiological problem. I have always felt that way. When I first came down with ME/CFS I saw a physician immediately and continued to see physicians as often as I could (until I ran out of money). This has never been less than a very, very serious problem for me.

 

[CBS]

A very real concern that I see running through the recent activity on this thread is that those amongst us who are the worst off are concerned that all recommendations acknowledge and take into account and respect their experience and lessons hard learned (often through being pushed into overexertion or doing so of their own volition - my own story).

I would hope that along the way we can give those amongst us with different experiences and perhaps less severe symptoms the same respect.

 

[Cort]

...the only way this works, I think, is for the patient to get to their correct exercise levels first and then, by using the exercise program correctly, they can slowly increase their ability to exercise. Cort

I can see I made a mistake here with stating 'exercise levels' rather than activity levels. I was tired when I wrote it and it was written poorly. I can see how that quote alone could be very offputting. It was created in reference to how Staci Stevens programs works when it works...ie" the only way this works".... I was stating that there was a way to figure out how Staci's program works even with the activity and exercise limitations imposed by ME/CFS and that way was for CFS patients to find their correct activity levels - which usually means reducing them levels considerably- and then, hopefully to use her program to slowly increase them a bit.

 

[Gerwyn]

From the CME by Dr. Bateman, Dr. Lapp and the CAA

http://cme.medscape.com/viewarticle/581527_8

I could not even do 100 steps a day No activity plan could improve my function and i could not meet any activities of normal daily living

This is from Dr Lapps website

" In fact, he has been working with physical and occupational therapists to put together a rehabilitation program to help get patients on their feet and moving up the treatment ladder. Several ingredients in Dr. Lapp’s activity rehabilitation program are described below.





You don’t have to do water aerobics, although you may eventually work up to this activity as you start to feel better and gain more endurance. How could this type of therapy work? Dr. Lapp presumes it helps patients in two ways:

1. the cool water tends to down regulate the immune system, so patients feel less fatigued and less flu-like.
2. The water pressure squeezes out fluid in the legs and trunk tissues where it tends to accumulate, and pushes it back into circulation where it is more helpful.

Low-level interval exercise:

Exercise no more than two to five minutes at a time and follow it up with five minutes of rest. Dr. Lapp says using this type of low-intensity interval exercise on a daily basis can help reduce the burning and searing types of pain, but it will not erase your pain altogether.

So if you excercise you will get better! What a message to give Drs who think we are malingerers anyway.This is GET in disguise

 

[Cort]

The adverse effects of deconditioning are overblown, in my opinion. Dr. Bell told me in the late '90s that people who recover from ME/CFS regain their conditioning in one month.

As Cort noted, Mike Dessin was able to reverse the temporary problems caused by inactivity when his health returned. But many of us who have forced ourselves, or been forced, to exceed our activity limit have never reversed the damage to our bodies. Years or decades after the event, we remain at a lower level of functioning.

That's why the CAA literature's embrace of CBT, GET and their derivatives--all of which encourage PWME to live beyond their capacities--is so troubling.

That's very good to hear about deconditioning - that's something I didn't know. I do not believe that the CME document encourages PWME's to live beyond their capacities. My take on it is that it is careful not to. Can you show me where it does?

 

[Cort]

From the CME by Dr. Bateman, Dr. Lapp and the CAA

http://cme.medscape.com/viewarticle/581527_8

I could not even do 100 steps a day No activity plan could improve my function and i could not meet any activities of normal daily living

This is from Dr Lapps website

" In fact, he has been working with physical and occupational therapists to put together a rehabilitation program to help get patients on their feet and moving up the treatment ladder. Several ingredients in Dr. Lapp’s activity rehabilitation program are described below.

You don’t have to do water aerobics, although you may eventually work up to this activity as you start to feel better and gain more endurance. How could this type of therapy work? Dr. Lapp presumes it helps patients in two ways:

1. the cool water tends to down regulate the immune system, so patients feel less fatigued and less flu-like.
2. The water pressure squeezes out fluid in the legs and trunk tissues where it tends to accumulate, and pushes it back into circulation where it is more helpful.

Low-level interval exercise:

Exercise no more than two to five minutes at a time and follow it up with five minutes of rest. Dr. Lapp says using this type of low-intensity interval exercise on a daily basis can help reduce the burning and searing types of pain, but it will not erase your pain altogether.

So if you excercise you will get better! What a message to give Drs who think we are malingerers anyway.This is GET in disguise

Well Gerwyn, I really don't know to say. He's saying that exercise for two to five minutes at a time helped reduce 'searing type of pain'. Can't you make even the mildest comments about strengthening/exercise programs! Look at what he's saying - 2-5 minutes at a time - can help reduce some types of pain.

I'm sorry, that's what he found! I don't think he made a particularly damning statement. He's talking about low-level intensity 'exercise' to reduce pain. He's not saying that it cures ME/CFS! He's not saying ME/CFS is all your head. He's saying that very, very light exercise can (may or may not) help (but not fix) reduce some patients pain and increase this patients limited functionality ( to a limited extent).

He's also talking about how water stimulates the immune system and stimulate circulations. He says you may be able to do some aerobic activity at some point but then maybe you won't.

This is mild stuff. This is NOT saying that CBT/GET will cure CFS. This is NOT stating that CFS is a behavioral disorder. These are mild reccomendations that may fit some people. The CME he co-wrote specifically points out that there are very disabled patients that cannot tolerate any of them.

I would note that Dr. Cheney recommends the same type of water therapy -so I guess he's in the GET boat as well!

 

[Roy S]

I've read the links that Kim provided, and I find this very troubling. This goes well beyond "rackets". There is sophisticated manipulation involved. I urge everyone to read about it.

I have silently watched as some of our sickest members have provided testimonials about the firsthand harm that CBT/GET has caused only to be countered by Cort's responses. His lack of acceptance of the inherent dangers of exercise and lack of compassion to our members who have spoken out has left me dumbfounded.

It breaks my heart to read the enormous efforts put forth by these members in an effort to convince Cort that their experience contradicts what is endorsed by the CAA and by some of the doctors who treat people with ME/CFS.

Not long ago, on the Medic thread, I posted this

And Cort repliedBut his recent posts about deconditioning on this thread tell me that no, Cort didn't ''get it".

Cort, can you explain to our sickest members why you insist on negating their experience? Do you believe that these members are perpetuating "rackets"? As someone who has had extensive training (8 yrs) in est/ Landmark Forum, you would know the language and what I mean, but for those less familiar with the program, here is a summary that I found to describe that term adequately: If you believe our members to be perpetuating "rackets", it would be kind of you to say so and not to waste their very precious energy and resources engaging in a debate that they can never win.

 

[Gerwyn]

Well Gerwyn, I really don't know to say. He's saying that exercise for two to five minutes at a time helped reduce 'searing type of pain'. Can't you make even the mildest comments about strengthening/exercise programs! Look at what he's saying - 2-5 minutes at a time - can help reduce some types of pain.

I'm sorry, that's what he found! I don't think he made a particularly damning statement. He's talking about low-level intensity 'exercise' to reduce pain. He's not saying that it cures ME/CFS! He's not saying ME/CFS is all your head. He's saying that very, very light exercise can help reduce some patients pain and increase some patients functionality.

He's also talking about how water stimulates the immune system and stimulate circulations. He says you may be able to do some aerobic activity at some point but then maybe you won't.

This is mild stuff. This is NOT saying that CBT/GET will cure CFS. This is NOT stating that CFS is a behavioral disorder. These are mild reccomendations that may fit some people. The CME he co-wrote specifically points out that there are very disabled patients that cannot tolerate any of them.

I would note that Dr. Cheney recommends the same type of water therapy -so I guess he's in the GET boat as well!

the point cort is that he is clearly stating that people will improve their functionality if they excercise more.That stuff about water and the immune system is bull .Drinking water may boost the immune system bathing in it does not.Patients with severe ME could not excercise at all .

eventually work up to this activity as you start to feel better and gain more endurance.

Excercise more and you will gain endurance activity will make you feel better.This is quite the opposite in people with severe ME

The CME states that most patients will be able to tolerate the program this is just speculation.Patients with severe ME have trouble getting out of bed.