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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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

Cort

Phoenix Rising Founder
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

I have NEVER discounted anyone's experience with CBT/GET. As Kim well knows there are many different types of these therapies. As she also well knows the ones that I was referring to are practiced mostly inside the US and they bear little resemblance to the damaging ones in the UK. As she also knows they make only mild claims of effectiveness (help people with symptoms). She also knows that the ones that I was referring to specifically try to avoid the push-crash cycle that the older methods use which result in into disaster.

She also knows that Dr. Klimas, Dr. Natelson and others who have behind us for years and have been researching the physiological aspects of CFS for decades support these programs for some individuals. None of them have ever stated they are cures. They have also couched their effectiveness in very limited terms.

The reason I was drawn into this discussion was because of the upset over their inclusion in the CAA's treatment brochures and the CME program. I think their prescriptions are very limited. I know people have been hurt by them in the past. I understand that they may be upset by my not acknowledging that. I apologize for that. I have, as everyone else has, gone through long periods of trying to ignore away my symptoms, push my symptoms, etc. None of that has worked for me.

Here's from the CME

Recommend CBT programs that focus on developing individualized activity programs that incorporate pacing and graded activity, and on coping behaviors, rather than programs that focus primarily on psychological factors.

That's what I'm referring to. Maybe nobody's getting that. Maybe the graded activity idea does not work but the idea behind that kind of graded activity is that once people get out of the push-crash cycle, maybe they can 'bank their energy' and start building up a bit more and feeling better and doing more. Nobody is talking about a cure. We
re really at a very low level of treatment in this disease. This is crude stuff - managing this disorder - so that the body can heal itself to the extent that it can - rather than treatment. We're like in the dinosaur age with regards treatment but that is where we are - to some extent stuck on management - there aren't that many good options. Again the protocols I was referring to

state they have limited effects
do not state that they are a cure or anywhere near a cure
are careful not to provoke patients into overdoing it
are focused on stopping the push-crash cycle

You can try to put me into an EST/CBT/Amygdala Retraining box but I don't think it fits. I fully acknowledge that EST and Amygdala and Mindfulness exercises have all helped with symptoms to some degree but none have fixed, or come close to fixing the core elements of this disorder for me. I agree its a complicated situation that I don't completely understand myself. Hopefully it will all come together over time.

By the way although we're focused on these kind of mindfulness practices I would note that the best reaction to anything that I've ever tried was to a heavy dose of Transfer factor and I have responded well to everything from D Ribose to glutathione to COQ10. My system for some reason rejects higher energy states and as my energy builds I generally fall apart - hence my focus on milder treatments that I hope will be able to coax my system along, somehow....
 

Cort

Phoenix Rising Founder
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 .

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.

Gerwyn you're saying that you know better than Dr. Cheney and Dr. Lapp about the effects of hydrotherapy and the immune system. I'm going to stick with them. Again Dr. Lapp is NOT saying that people will improve their functioning. He says some patient can. He's not saying that exercising will allow people to work either or run or even walk a mile a day. He's not saying anything of THAT but I get the sense that that's what people are hearing.

The CME is NOT speculation either. Its written by several physicians who have devoted their careers to treating this disorder. They have seen and treated thousands and thousands of patients. Its based on their direct experience.

The CME also aknowledges that some patients with severe disability are bedbound.

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.

I agree that this paragraph is too optimistic - that there is this kind of sense that people will get better that runs through the document. I think its more cultural than anything - doctors want to provide something positive. They do acknowledge the more severely ill patients. I agree that there should probably be a section on them although by definition they are the ones that none of the treatments work for.
 

lansbergen

Senior Member
Messages
2,512
I think the big problem is that people who have not been in the situation of severe ME patients cannot imagine what it is.
 
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Gerwyn

Guest
Gerwyn you're saying that you know better than Dr. Cheney and Dr. Lapp about the effects of hydrotherapy and the immune system. I'm going to stick with them. Again Dr. Lapp is NOT saying that people will improve their functioning. He says some patient can. He's not saying that exercising will allow people to work either or run or even walk a mile a day. He's not saying anything of THAT but I get the sense that that's what people are hearing.

The CME is NOT speculation either. Its written by several physicians who have devoted their careers to treating this disorder. They have seen and treated thousands and thousands of patients. Its based on their direct experience.

The CME also aknowledges that some patients with severe disability are bedbound.



I agree that this paragraph is too optimistic - that there is this kind of sense that people will get better that runs through the document. I think its more cultural than anything - doctors want to provide something positive. They do acknowledge the more severely ill patients. I agree that there should probably be a section on them although by definition they are the ones that none of the treatments work for.

I am saying that bathing has no effect on the immune system that is scientific fact..Dr Lapp clearly states on his website that his approach is a rehabilitation programme and patients will and do improve functionality.

Wesselly has seen thousands of patients .He is making interpretations based on his cognitive biases as everyone does.That is why we need scientific evidence.The CME does not contain any thus it is speculation.
 

Cort

Phoenix Rising Founder
I am probably one member that has a higher activity level. But one problem is that I never know when my heart rate is going to go up and stay at an excellerated rate. This is even after several diagnostic tests that include 4 holster monitor testings, numerous ekg's, echo's and stress tests. Doctor's have no answer why or when this is going to happen. Just walking can keep my rate excellerated for hours. Do I want to risk higher levels of exercise. No thanks, I think I get enough. I am doing aerobic excercise (my heart rate is definately up) just sitting at my desk after walking a few feet.

Again, I don't think anything in the CME or anything Dr. Lapp or Bateman are saying says that you should 'risk higher levels of exercise'. These doctors are fully aware of the dangers of too much activity. Dr. Bateman's patients just participated in Dr. Lights exercise study that showed that too much exercise sent their muscle receptors off the charts. Her patients participated in the Pacific Fatigue Labs repeat exercise studies that showed about 50% of patients have metabolic dysfunction.
 
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Gerwyn

Guest
I think the big problem is that people who have not been in the situation of severe ME patients cannot imagine what it is.

I agree absolutely.I dont think any of the physicians draughting these guidelines actually see any.if they did they would not write the stuff that they do
 

Cort

Phoenix Rising Founder
Wesselly has seen thousands of patients .He is making interpretations based on his cognitive biases as everyone does.That is why we need scientific evidence.The CME does not contain any thus it is speculation.

Not to be 'snarky' I'd have to say 'so'?

Isn't this field is necessarily filled with speculation? Lets put it this way - if the CME only contained information on treatments that had been studied with regards to CFS it would've looked like the Sparks document. I thought the Sparks document turned out the way it did in part because the CDC wouldn't put anything on there that hadn't shown up in the scientific journals. I think that's one reason it was so CBT heavy. If you wanted to get away from 'informed speculation' - as you seem to imply? - that's what you're going to get.

Until we have more treatment trials all we have is the experience of doctors to guide us. You can discount that saying it's 'speculation' but that's all we have at this point and I think its pretty good actually. Actually I think the informed speculation of a really good doctor who's seen thousands of patients may be worth more than a study or two with 25 or so patients.
 

Cort

Phoenix Rising Founder
Thanks Marteenz - I think I butchered your name again :) - I appreciate your thoughtful post.

I don't want to be perceived as an exercise advocate for ME/CFS. My guess is that at best it could only help some people in limited ways. I don't even think of it as a treatment for chronic fatigue syndrome. I think of it as a way for some people to manage their illness better - to live within the confines of the illness better. I'm getting older and I should really try to get some muscle tone back.

Lifting even small weights, however, has always brought on muscle stiffness and pain - interestingly across my entire body not just the muscles involved. (This makes me think that it is the pain circuits in the brain that are involved - that they all flare up once I start to exercise, and studies have shown that the pain sensitivity in CFS goes up after we exercise rather than down as it does in normal people. (Another fascinating fact that seems to be largely ignored).

But still I am getting older and I really should try to do a very limited anaerobic weight lifting trial - lifting a five pound weight once a minute or something like that. That's how I envision these 'exercise programs'. I don't think they're the way out of CFS I've tried just about everything I could - but I've never tried to do this really finely tuned, very very slow, chart my symptoms type of program.
 

Mithriel

Senior Member
Messages
690
Location
Scotland
I wrote
I am especially against all these things which advocate exercise without strong warnings because I have not walked more than a few steps since I over did walking in 1990. We are not arguing from a philosophical viewpoint, we are living with the consequences. I do not want anyone else to endure my life.

I CANNOT sit here and let a PATIENT organisation recommend the very thing that did this to me.

Mithriel

Cort wrote
??? Are you saying that Dr. Bateman or Dr. Lapp or the CAA recommends that you push yourself into a crash by exercising? My understanding is that all of these doctors and the CFIDS Association recommend that patients start very very slowly and keep within their limits at all times. Can you show me where they recommend that you stick to a rigid schedule of exercise? Where you are advised to ignore your symptoms?

I am saying that they are recommending pushing to a crash becasue thye do not seem to be aware of how little some people cna manage. I tried 1 minute on an a treadmill, 15 minutes lying down once a day for three days, then I crashed for three months. There is no safe level for many of us and we do not experience a worsening of symptoms before a long crash so there are no clues to stop.

As I said I do not blame the doctors but it is important for patients to educate them. Almost by defintiion they must be seeing the patients who are most able to add exercise into their lives, but if they tell ordinary doctors it is good it will be rolled out for everyone.

I want to know why we need exercise programs anyway. If someone feels ready to begin to recondition and wants a safe way to do so that's one thing but this continual harping on about exercise or activity helping with symptoms is so wrong.

Advice on activity for ME/CFS is simple, DO LESS. It is an illness where the symptoms are CAUSED by exercise. Doctors should be warning their patients against it.

Part of the trouble is the "fatigue" word. We always knew the cardinal symptom of ME was an abnormal response to exercise, but when the CDC brought in fatigue they brought all the baggage about building up stamina and the myth that we are people who are such couch potatoes we are making ourselves ill.

People don't need stretching exercises if they are feeling well enough to do some shopping or wash their clothes and if they are too sick to do those things they should be staying well away from exercises.

Ramsay said twenty years ago that the only use for exercise programs was to distinguish ME from other illnesses.

As people begin to feel better, they may want to know how best to add exercise into their life and it is good if some doctors are looking at what such people can do, but it is warnings the rest of us need.

I have managed to build up a little bit of stamina and I try to keep a full range of movements so I am not totally against some of what they say, but it is the context of how they say it which is giving it far to much prominence. And the doctors who are being trained will give it more prominence so it becomes dangerous.

It is better to train GPs to advise against exercise and simply to say that if they have any patients who wish to add exercise into their lives refer them to a specialist. No harm done and if anyone feels they would benefit they could find out form safe sources. Problem solved. There are many treatments that only speciaists give, exercise for ME/CFS should be one of them, if people insist on having them.

Mithriel
 

Dolphin

Senior Member
Messages
17,567
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.
I think it also needs to be remembered that some people who have severe have also been mildly affected so can have experience there too.

I was also thinking again about your comments about doctors having broader experiences than people who are involved in patient groups. I am not sure if there is that much of a difference between somebody who has talked with 100 patients and 5000 patients (say) in terms of advice with activity, exercise, etc. They both will have seen quite a range of patients. And as Dr. Yes (and possibly others) has pointed out, doctors' experiences can be more narrow.
 

Dolphin

Senior Member
Messages
17,567
tomk said:
There is no indication that people can just do more after finding their "baseline" (which in effect varies). This is the view of the CBT/GET school. Just because it sounds like a nice theory, doesn't mean it works - doctors shouldn't be given the impression that it will work.
Tom are you really putting Staci Stevens in the CBT box? I'm not talking about study evidence - altho stated that one study did show improvement - I'm talking about her experience with her patients. I would note that what you say also contradicts what Bruce Campbell at the CFIDS Self Help Website - with his years of administering that program - asserts - that if you do this correctly some patients can increase their functionality over time. Not everybody but some.

Cort, you cut out what I was replying to:
I agree that its a strange situation - promoting an exercise program that most people cannot do because there are you doing too much exercise. 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. This will help with their muscle tone, their feelings of well-being and their general health. There's no indication that I can tell that they can never engage in vigorous physical activity but many of them can feel better.
I am saying one can assume none of these things.

One can not assume "exercise will help their muscle tone",
one can not asssume exercise will help "their feelings of well-being"
and
one can not assume "their general health".
And most importanly, one can not assume that "they can slowly increase their ability to exercise".

While if it was a person who doesn't have ME/CFS, one could generally assume that exercise would bring about such changes.

I can't remember what was the context (except I recall you wrote in the context of the severely affected), but this quote which you just quoted approvingly http://www.forums.aboutmecfs.org/sh...-s-the-CAA-doing&p=70249&viewfull=1#post70249 , gives the impression the severely affected will be able to do more after some exercise:
Severely Ill Patients

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.
 
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Gerwyn

Guest
Not to be 'snarky' I'd have to say 'so'?

Isn't this field is necessarily filled with speculation? Lets put it this way - if the CME only contained information on treatments that had been studied with regards to CFS it would've looked like the Sparks document. I thought the Sparks document turned out the way it did in part because the CDC wouldn't put anything on there that hadn't shown up in the scientific journals. I think that's one reason it was so CBT heavy. If you wanted to get away from 'informed speculation' - as you seem to imply? - that's what you're going to get.

We do have treatment trials on CBT and GET.In patients with true ME/csf they have no value whatsoever and are potentially dangerous. Wesselly is interpreting the symptoms according to the content of his cognitions(however warped they may be).
All doctors do this so experience becomes a self fullfilling prophecy.speculation is no basis on which to make treatment guidelines.the Sparks document misrepresented the available science by giving equal weight to scientific studies and those which were antipositivistic.The difference between the two kinds should be obvious to an organisation that purports to be an advocative one.
 
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Gerwyn

Guest
I remember the doctor that diagnosed me years ago said "you should start riding a bike". I said so you mean I can actually ride a bike? I felt happy about the fact he said I could even though I felt horrible. I pushed and pushed myself to do things rather then rest. 2 weeks later is when I wound up at the hospital with my heart rate going 180. It took 3 IV shots of I'm not sure what medication to bring my heart rate down to a normal rhythm. I thought I was going to die right there by myself in the ER since I had driven myself to the hospital. They said I could have gone into cardiac arrest on the drive there.

This is why I have a problem with doctor's or whoever that suggest exercise for all. Until the cause is found for this, how can a treatment be suggested. We are all affected differently and I think we all figure out what and what doesn't help. At least I have. Sometimes the hard way.

me too I went on an excercise bike ,and had a seisure as a result that almost killed me!
 
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Gerwyn

Guest
This is from the ME 25% group and resonates with my own history.Writers of guidelines and rehablitation programmes please take note

I need time and space to recover from this illness in a tranquil and restful environment. You can help me by pulling your weight and not adding to my stress-levels.

One of the most important facts that you can know about this illness is the amount of damage that can be done by pushing me beyond my capabilities. This is particularly vital at times when I'm very under-par - e.g. in the mornings, because I am so limited that the tiniest little thing can prove to be too much for me. Not responding to my needs, particularly that of total peace and rest when I'm tired, will make the condition worse, with recovery time spanning from hours to years. The complete loss of my mobility was caused by being pushed a little further than my limitations.

OH GOD DO I REMEMBER THAT
 

citybug

Senior Member
Messages
538
Location
NY
Re: the WPI grant
It was a joint grant with Kerr but think it was a different one to the study that got cancelled.
Here is some info on the grant:
http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0910C&L=CO-CURE&P=R6044&I=-3&X=32CF0D2B3A5423B80A
Notice, no specific mention of XMRV.
The Kerr study that was cancelled was looked at NK cells in XMRV. Invest in ME were supporting it.

Thank you. It does say novel viral infections. Great link -with what they have done and plans to look at genetic factors of susceptibility and the dysregulation of the host defense system.

But 1.6 million for five years is only $320,000 a year! if they got it.
 

Dolphin

Senior Member
Messages
17,567
tomk said:
Thanks for your contribution.

I'm not 100% sure what you are saying but you may be saying that you have heard an exercise strategy that seems plausible but you are not doing it at this moment.

This is the core issue that many agreed to: that balancing activities and energy expenditure in people's lives should be what everyone should try to do. If people are in a position where they want to, they could be given very CFS-specific exercise strategies they could do within this. But
people should be free not to use up their energy on exercise if they don't want to.
That doesn't mean they should necessarily do nothing - people should do up to what they feel capable of. But "doing up to what one feels capable of" should include any activity rather than specifically exercise.

I think we're getting too caught up in the 'exercise' word.
I think they are caught up on the word. They are the ones who keep talking about exercise programs.

As the CME states all activity should be regarded as 'exercise

Advise patients to consider all the movement and activity they engage in, including personal grooming, grocery shopping, household chores, tasks performed during full- or part-time employment, anaerobic exercise, and aerobic exercise, when developing an energy management program.

Its all part of the bag. For many patients daily activities preclude doing any further exercise. I would say for me that they preclude 'exercise' (a five to 10 minute walk) on about half my days.
You might make that distinction.
Doctors and others don't necessarily.
These programs aren't saying for the patient to use a pedometer and to try to do x number of steps ever day (and reduce it if they feel bad). They are suggesting doing "meaningless" exercise.

Specific exercise programs for CFS are experimental treatments and should be recognised as such.

They make all sorts of claims e.g. exercise will help with pain, where there really isn't the published evidence (but doctors and other professionals can think there is evidence as it may be the case for healthy people).
 

Dolphin

Senior Member
Messages
17,567
http://cme.medscape.com/viewarticle/581527_8

Kim, will no doubt, think that I am discounting everyone's experience but the truth is that I think I could benefit from this. I've had CFS for about thirty - a relatively mild case - but still unable to do any 'real exercise'. All I've done is walk. But I have shoulder, neck and head pain and knee pain. My muscles are all flaccid. I imagine that if I did this right - strengthening exercises with small weights - in very short time periods - it could help with that. Every time I've tried to do weights or anything like situps - I've had an immediate bad reaction but I've never tried to do it at such a slow pace. I imagine that if I got small hand weights and used them very slowly I would feel better. I think this is pretty darn mild stuff. Nobody says its going to make you well.

Swimming I don't about it :)
Hoping a program will work is not the same as it actually working. Lots of people think lots of drugs and supplements might help also. Lots of treatments can sound plausible.

Not sure what you saying about swimming.
 

Dolphin

Senior Member
Messages
17,567
Again - please note that I said SOME PATIENTS. Dr. Jason's study on Pacing certainly found improvements in quality of life and symptoms. I'm not sure about functioning. I would point out that nobody is saying 'wellness' or getting well - they are saying 'some improvements'.

Pacing and Graded exercise programs are not the same thing. Within pacing, you can try to increase exercise, but it's the pacing that takes precedence. In the Leonard Jason trial, pacing was compared with the Staci Stevens program. And pacing came out on top.