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

[oerganix]

Moderator:

Roy, I am deleting your last cartoon for two reasons. Firstly, it was not even remotely funny but in fact quite offensive. Secondly, animated images such as that can be very disorienting for ME/CFS patients.

Everyone - Please tone down the rhetoric. Because someone holds a different point of view does not make them stupid. It simply means they have a different experience, just as valid as yours. I don't want to have to close this thread but will unless it moves on to something more productive.

Please define what, in your opinion, is "more productive", so that we can avoid the threat of being closed down because we disagree with Cort, and have a sense of humor about it, while he does not.

Are all the other hundreds of posts on PR with animations or videos now going to be removed because it can be "disorienting"?

Personally, I find it rather disorienting that Cort can't seem to hear the voices of people on this thread saying that activity or exercise programs being hyped by the psych lobby and CAA "experts" are completely contraindicated for this disease until such time as the cause and cure are found. Nobody with polio or MS has to put up with this, instead of focusing on real treatment that really eases symptoms, so why should PWCs have to? Just who is treating who as if they were stupid?

Roy, I thought your cartoon was spot on, and yes, very funny. Thanks for all you have done and continue to do for PWCs.

 

[CBS]

Please define what, in your opinion, is "more productive", so that we can avoid the threat of being closed down because we disagree with Cort, and have a sense of humor about it, while he does not.

Exhibit 1a of what is unproductive!

 

[CBS]

No one is forced to read anything here. If you feel it is a waste of time, stop reading.

I'm sorry that you apparently don't like hearing my opinion. I'm not talking about wasting time, I'm talking about character assassination. I'm not leaving.

 

[Cort]

Please define what, in your opinion, is "more productive", so that we can avoid the threat of being closed down because we disagree with Cort, and have a sense of humor about it, while he does not.

Are all the other hundreds of posts on PR with animations or videos now going to be removed because it can be "disorienting"?

Personally, I find it rather disorienting that Cort can't seem to hear the voices of people on this thread saying that activity or exercise programs being hyped by the psych lobby and CAA "experts" are completely contraindicated for this disease until such time as the cause and cure are found. Nobody with polio or MS has to put up with this, instead of focusing on real treatment that really eases symptoms, so why should PWCs have to? Just who is treating who as if they were stupid?

Roy, I thought your cartoon was spot on, and yes, very funny. Thanks for all you have done and continue to do for PWCs.

Organix I know that the 'exercise programs' hyped by the psych lobby are dangerous. I know that people have been pushed to disaster by those programs. I know that lives have been ruined by those programs. I know that people whose health was much less impaired are now really impaired by doing those types of programs.

That is one reason why I've stuck in here so long. I, above all, do not want to be mischaracterized on this subject and I have felt that if I dare to leave this topic that that will happen. Its clear that sticking with it has had that very effect.

What I've been trying to say is that this is not that Psych program. That it's careful to educate doctors about the dangers of exercise, that its careful to not have patients overdo their activities, that it does not ask patients to push through their symptoms....and that it emphasizes post-exertional malaise from the very beginning of it.

I agree that most patients are overdoing it. I have overdone it physically for most of my life. I have experienced the muscle burning, orthostatic intolerance, inability to concentrate, heart pounding, cement-like limbs, increased sensitivities and horrendous fatigue that comes with what I hardly used to consider even mild exertion. I would never suggest that anyone do anything like that.

The odd thing is that I don't even care about 'exercise programs'. I do my little exercise - my little walking every other day - it definitely does help - and then that's it. I don't think of 'exercise' as a treatment. As an avid exerciser before I got ill I banged myself against the exercise wall, on and off, fruitlessly, for 10 or 15 years vainly hoping that this aspect of my life that I held so dear would return. Finally I got the message - I can engage in no 'exercise' as I knew it, without crashing.

Now I simply think of it as a way - for me - of keeping my body as fit as possible - within its realm of unfitness! Thats basically what I think of that portion of the CME as well.

This is such a lose-lose situation for me. You think I'm saying one thing and I think I'm saying something very different. I probably never should have entered into this discussion. I'm going to bow out - finally. Hopefully we can meet again on more congenial grounds

 

[Dolphin]

What I want is a discussion about what should and shouldn't be in guidelines.

I'm not particularly interested in discussing personalities.

However, a few issues do arise:

People say because Dr X (or expert Y) says something, it should be accepted with regard to exercise/management advice. I don't accept that and try to explain my reasoning. Doesn't mean I think Dr. X (or expert Y) is a meanie. I see doctors in Ireland who see lots of patients. Doesn't mean what they say should be in an exercise program for doctors. So if Dr. X or expert Y is mentioned as evidence that advice should be accepted, the point (and Dr. X or expert Y) may be challenged in a discussion. I see it as at least as much other people's fault for mentioning Dr. X or expert Y in the thread.

The model is that expert doctors (and other professionals) draw up management guidelines. But if all these doctors and professionals are suggesting exercise to their patients, guidelines are going to recommend exercise. As Dr. Yes pointed out http://www.forums.aboutmecfs.org/sh...-s-the-CAA-doing&p=70759&viewfull=1#post70759 , telling average Dr. Joe that exercise is what patient need is fraught with problems. I feel it was constructive to point out that there are UK experts who don't recommend exercise and named them.

I would much prefer to spend my time on other things than activism relating to ME/CFS. But I have seen that so many experts don't get all aspects to managing the illness. For example, as I said earlier, the point about people only having limited energy and lots of ways to spend it so why should they be expected to do (experimental) exercise programs that can use up a good chunk of their energy.

 

[CBS]

Hi Tom,

For me, it's not about taking anything from a "CFS expert" as gospel. We ought to be c=questioning and making suggestions. What is wrong about what has happened in this thread is unfounded character assassination through via insinuation.

Earlier in this thread the statement was made, Does Dr. Bateman see patients at home? - The clear implication was that she couldn't possibly know how bad CFS can get.

Dr. Bateman watched her own sister die from complications of CFS. My guess is that she spent years at her sister's home watching and feeling quite helpless as she got a very painful lesson in just how deadly CFS can be. Three months ago Dr. Bateman and I sat down and talked about this very subject (how CFS can/will lead to death if you don't stay within your limits),

We absolutely have to stop with the personal attacks and unfounded insinuation.

Let's get on with the guidelines on a new thread.

 

[Martlet]

Please define what, in your opinion, is "more productive", so that we can avoid the threat of being closed down because we disagree with Cort, and have a sense of humor about it, while he does not.

This has nothing to do with Cort. Other members have complained about the tone of this thread and feelings are being hurt. As for the animated image, people have complained about these because they make some people experience nausea and/or vertigo.

"More productive" means to stop repeating the same arguments over and over in the hope the other person will "get it." There have been numerous very heated arguments in this forum about graded exercise programs, always ending in the same way, with those who hold a different point of view feeling as if they have to leave the discussion.

 

[dannybex]

Nobody with polio or MS has to put up with this, instead of focusing on real treatment that really eases symptoms, so why should PWCs have to? Just who is treating who as if they were stupid?

Sorry, but not true -- from post-polio.org:

Advising all polio survivors not to exercise is as irresponsible as advising all polio survivors to exercise. "Recovery from paralysis is thought to be due to the re-sprouting of nerve endings to orphaned muscle fibers creating enlarged motor units. Recovery is also attributed to exercise that facilitates the enlargement of innervated muscle fibers. For example, some polio survivors regained the use of their arms and have walked for years with crutches. Others regained the ability to walk without the aid of braces, crutches, etc., and have continued to walk for decades."

http://www.post-polio.org/edu/pphnews/pph19-2a.html

Regarding MS, from the National MS Society:

"In addition to being essential to general health and well-being, exercise is helpful in managing many MS symptoms. A study published by researchers at the University of Utah in 1996 was the first to demonstrate clearly the benefits of exercise for people with MS. Those patients who participated in an aerobic exercise program had better cardiovascular fitness, improved strength, better bladder and bowel function, less fatigue and depression, a more positive attitude, and increased participation in social activities. Since 1996, several additional studies have confirmed the benefits of exercise."

http://www.nationalmssociety.org/living-with-multiple-sclerosis/healthy-living/exercise/index.aspx

As for CFS/ME, this is never going to be a black and white issue, as Cort has repeatedly tried to point out. Exercise or pacing MAY help SOME people, and it MAY be VERY HARMFUL for others.

just my two cents.








"

 

[dannybex]

I think Roy's cartoon is funny and I find it disorienting that Cort does not hear our voices.

If you think that "Cort does not hear our voices" then I guess you haven't yet read the last few pages of this thread.

 

[oerganix]

Organix I think I hear them. I hear that 'exercise programs' hyped by the psych lobby are dangerous. I get that and I completely agree with that. That is my personal experience which is one reason why I've stuck in here so long. I, above all, do not want to mischaracterized on this subject and I feel that if I leave the topic people will leave with the wrong impression.

What I'm saying is that this is not that program. That its a very mild program, that its careful to educate doctors about the dangers of exercise, that its careful to not have patients overdo their activities, that it does not ask patients to push through their symptoms....and that it emphasizes post-exertional malaise from the very beginning of it.

I agree that most patients are overdoing it. I have overdone it physically for most of my life. I have experienced the muscle burning, orthostatic intolerance, inability to concentrate, increased sensitivities and horrendous fatigue that comes with what I hardly used to consider even mild exertion. I would never suggest that anyone do anything like that.

This is a lose-lose situation for me. I'm going to bow out.

Cort, I understand that you understand that exercise/activity isn't right for everyone, etc. That's not the issue, IMO.

What I don't think you get is that most patients don't want this kind of emphasis on ANY kind of exercise/activity "program" going into doctor education while there is no proof that it really helps anyone and there is the counterproductive, very real potential, that it harms some people as badly as being disabling or fatal.

I would propose that instead of ANY recommendations on exercise in doctor educational materials, they report the Drs Lights studies showing how PWCs bodies respond so extremely differently from other illnesses, not to mention "normals", and then teach them not to prescribe or encourage exercise AT ALL. The concerns of being "deconditioned" have been disproven over and over; PWCs are already doing all they can and are no more deconditioned than sedentary healthies, so why divert any attention or energy towards an idea that basically only gives the docs the illusion they are doing something.

As for Bateman et al seeming to promote exercise programs, I wonder if they may have changed their minds since the Drs Light's studies came out? Or that they might be succombing to the impulse to provide docs with the illusion that they are doing something helpful?

Where some on the forum have gotten the impression that you're not listening is where you claim the CME materials WILL result in doctors understanding the perils of overdoing it, while many people here on the forum have provided personal examples of doctors NOT getting it. Dr Yes has said it so well...that docs just scan materials like this and pick up on a few key words without getting the nuances.

Orla and I and others have repeatedly said that the topic of exercise in the ME/CFIDS patient is premature and a distraction from research and treatments that are actually working for some people.

Since exercise doesn't help, isn't needed and can be disabling or even fatal, and doctors' assumptions about it are usually wrong, leave it out of CME materials.

(I have no doubt you are of good character and I haven't seen character assassination done on you, but I haven't read everything. I do think your sense of humor is underdeveloped, or a bit intolerant, but you're still OK with me, not that it's important that you should be. And thanks again for this forum! I actually agree with you on lots of things...it's just some very important things that we don't agree on that provoke me to post. Hugs to you from the loyal opposition!)

 

[Marco]

I've been watching this thread from the sidelines and have seen it become more and more heated and personal.

Here's my two cents/tuppence worth.

I have no position on the CAA whatsoever and almost without exception take Cort's comments as fair reasonable and balanced.

I can also see why, CAA, in the absence of any agreed treatment protocol, might host information on exercise as a means of helping maintain a certain level of functioning, as might be recommended for other chronic illnesses.

The problem is ME/CFS isn't just any chronic illness.

Combined exercise/CBT programmes have been used as an excuse not to carry out proper research and develop proper treatments.

In addition, what is the greatest benefit of any exercise programme to a PWC? The answer is, potentially, the ability to cope a little better with the symptoms and everday life. Benefits not to be dismissed lightly but also not life changing. On the other hand what is the greatest harm that any exercise programme could do to a PWC. The answer unfortunately is that it could be fatal.

Any advocacy organisation should be aware of the politics of exercise with regard to ME/CFS and all that entails, and be aware of the balance of benefits and risks.

No disrespect to the folks at CAA, but weighing up all the issues I personally think its better not to mention exercise programmes at all.

 

[dannybex]

Hi Tom,

For me, it's not about taking anything from a "CFS expert" as gospel. We ought to be c=questioning and making suggestions. What is wrong about what has happened in this thread is unfounded character assassination through via insinuation.

Earleir in this thread the statemtn was made, Does Dr. Bateman see patients at home? - The clear implication was that she couldn't possibly know how bad CFS can get.

Dr. Bateman watched her own sister die from complications of CFS. My guess is that she spent years at her sisters home watching and feeling quite helpless as she got a very painful lesson in just how deadly CFS can be. Three months ago Dr. Bateman and I have sat down and talked about this very subject (how CFS can/will lead to death if you don't stay within your limits),

We absolutely have to stop with the personal attacks and unfounded insinuation.

Let's get on with the guidelines on a new thread.

Very well said CBS. Thank you.

 

[jackie]

look at our very own new me/cfs video. (wonderful vid, imo!) Look at all of "us" in that video. Some (not all of course...but some...standing in front of the golden gate bridge...standing at the ocean, sitting on a bench shyly smiling, trying to cuddle with the kids - i would look just like them if I'd included myself -and yet, I have great difficulty walking)....I KNOW that many of those folks most likely experience PEM...that there is a good chance that they are exercise intolerant (and that exercise/activity may have caused them significant set-backs/relapses). I KNOW this because i "talk" to them here....AND i ALSO experience pem and exercise intolerance.

BUT what do you think a doctor thinks when we are sitting in front of him in an office (how did we get to the office, anyway?)..and he has approximately 7 minutes (i think thats the recommended time for hmo patients to be seen these days)...and he has mountains of info he has had to try and process for his other patients as well as you (remember many wont have access to any doctor except a primary care...who may have had limited exposure to me/cfs - in fact you might be his only one!....isn't familiar with the terminolgy..."I've never heard of "PEM"..."can you spell Myalgic Encephalomyelitis for me? is THAT what you say you have now?)"....what he DOES know is that EXERCISE is considered PREVENTATIVE CARE to an hmo doctor. Period. End of story.

And he's going to listen to the protests of a patient who has been whining about an illness he can't even find on a damned test...who doesnt even look sick...with or without a cane? if i can make it into his office...why shouldn't he tell me to exercise...he doesn't have to live with me to see the after effects. Many docs have seen so much info filtering in about "CFS" for so many years...so much contradictory info - from an unofficial change in name (cf vs cfs vs cfids vs me/cfs etc etc etc)...to "causes" proven and dis-proven...to meds tried and given up on)...i serously wonder how many are even interested in being "educated" about something so easily (and conveniently) described as "mysterious"? most of us are lucky if we have a doctor who even listens to us now.

(one more example....when i asked about a spect - a neuro said he could not - would not spend his limited time and energy fighting with my ins. co for a test that someone "like me" didn't need. He said he'd fight for my right to a spect scan if and when i came back to him dragging my leg (as in a stroke!). Is a doc who thinks like THAT, very likely to take the time to READ this info...ESPECIALY if i recommend it? ESPECIALLY if I try to tell him that I'M one of the "ones" that are different - and cant do what HE wants me to do - regardless of a cautiously worded document...with mild recommendations?) This is the "reality" of the situation in my world, anyway - (i pray i'm one of the few routinely dealing with this - but i fear i'm not)................j imo

 

[Dolphin]

Look anywhere on the internet and google exercise recommendations...yesterday I went to a site (i forget how to link...sorry teej!) that said "regular exercise has a positive effect on the general health of people with diseases and chronic conditions". Another said "Patients with Parkinsons, MS and Alzheimers should be encouraged to regularily exercise".

And, of course, they are fine for the "regular" population. NOT us! Obviously, those well enough to move without PEM occurring ..will MOVE on their own - without a recommendation to do so.

Doctors KNOW these recommendations...without WARNINGS TO THE CONTRARY for those with me/cfs from our advocacy groups...why in the world would WE be any different than a disabled MS patient...in their un-enlightened eyes???

Yes, that is generally the position that to me looks the safest and most sensible at this time.

 

[MEKoan]

Great post Jackie!

 

[oerganix]

Sorry, but not true -- from post-polio.org:

Advising all polio survivors not to exercise is as irresponsible as advising all polio survivors to exercise. "Recovery from paralysis is thought to be due to the re-sprouting of nerve endings to orphaned muscle fibers creating enlarged motor units. Recovery is also attributed to exercise that facilitates the enlargement of innervated muscle fibers. For example, some polio survivors regained the use of their arms and have walked for years with crutches. Others regained the ability to walk without the aid of braces, crutches, etc., and have continued to walk for decades."

http://www.post-polio.org/edu/pphnews/pph19-2a.html

Regarding MS, from the National MS Society:

"In addition to being essential to general health and well-being, exercise is helpful in managing many MS symptoms. A study published by researchers at the University of Utah in 1996 was the first to demonstrate clearly the benefits of exercise for people with MS. Those patients who participated in an aerobic exercise program had better cardiovascular fitness, improved strength, better bladder and bowel function, less fatigue and depression, a more positive attitude, and increased participation in social activities. Since 1996, several additional studies have confirmed the benefits of exercise."

http://www.nationalmssociety.org/living-with-multiple-sclerosis/healthy-living/exercise/index.aspx

As for CFS/ME, this is never going to be a black and white issue, as Cort has repeatedly tried to point out. Exercise or pacing MAY help SOME people, and it MAY be VERY HARMFUL for others.

just my two cents.








"

You took my statement out of context.

Polio is now treated as having originated from a viral cause, not a mental illness. MS is also not being treated as if it is all in the patients heads. Those fields can now legitimately concentrate on "recovery".

When the ME/CFS field gets to where polio and MS are today, THEN we can talk about exercise, which has NOT been proven to help ANYONE, despite all the "mays" and "some peoples". Waffle words do not trump the experiences of real people and the revelations of people like Prof. Malcolm Hooper of "Magical Medicine" fame.

Pacing is an entirely different subject and not one that I addressed in my post. Too many docs are confusing pacing with exercise, another reason to stop talking about it at all, until there is more real research on how it affects the mitochondria of PWCs.

"If you think that "Cort does not hear our voices" then you haven't read the last few pages of this thread. " - DannyB

Most of the posters on this thread have had the same impression, that Cort does not hear our voices, when it comes to the educational materials for docs. If you haven't noticed that, then you haven't read the last few pages of this thread.

In trying to communicate that to Cort, who repeats HIS same arguments, we are then accused of making the same arguments over and over. Much of what has been said is not argument, but rather illustrations, based on real people's real experiences, and other "experts" who have found the psychobabble to be fraudulent and UNscientific, which Cort then refutes with abstract theories and the advice that we should listen to higher authority....the CAA and docs quoted there.

Not gonna happen! We've been experted on for way too long and we're not gonna take it anymore!

 

[Dolphin]

IMHO,

PACING: Great! We need that to prevent crashes and disease progression, and to allow our bodies the best shot possible for recovery. We need to educate new people with this information to spare them the hell of disease progression. Pacing should be a top priority in any treatment plan for ME/CFS.

GET: Dangerous in any form for most of us. Therefore, tt should not be part of any educational or recommended information for the treatment of ME/CFS. In fact, it should only be mentioned as a bold lettered WARNING against it in any form. There should be no arguments about what forms, levels, periods of exertion etc, may or may not be acceptable.....None of it is acceptable! The patient should be educated and supported to learn to function within their energy envelope (pacing), and trusted they will expand that at their own pace as their health allows, and not the other way around because for most of us, the other way around is deadly.

It's not at all my personal experience, or that of countless others......but even if there are milder level PWC's who may benefit from GET, I would still say that GET should not be part of any general recommendations until more is known about how those people can be accurately identified. It's not good enough that a few doctors currently have some understanding of those differences and respect it.....we need the science behind it. Trial and error is not an option with something so dangerous. Until there is a definitive test that determines who will and who will not benefit from GET, it should not be considered, supported, or suggested in any manner as being helpful for ME/CFS.

Good points, IMHO. If a medicine causes a lot of harm in even a small group of patients, it is often taken off the market for a period or even indefinitely.

 

[CBS]

I've been watching this thread from the sidelines and have seen it become more and more heated and personal.

Here's my two cents/tuppence worth.

I have no position on the CAA whatsoever and almost without exception take Cort's comments as fair reasonable and balanced.

I can also see why, CAA, in the absence of any agreed treatment protocol, might host information on exercise as a means of helping maintain a certain level of functioning, as might be recommended for other chronic illnesses.

The problem is ME/CFS isn't just any chronic illness.

Combined exercise/CBT programmes have been used as an excuse not to carry out proper research and develop proper treatments.

In addition, what is the greatest benefit of any exercise programme to a PWC? The answer is, potentially, the ability to cope a little better with the symptoms and everday life. Benefits not to be dismissed lightly but also not life changing. On the other hand what is the greatest harm that any exercise programme could do to a PWC. The answer unfortunately is that it could be fatal.

Any advocacy organisation should be aware of the politics of exercise with regard to ME/CFS and all that entails, and be aware of the balance of benefits and risks.

No disrespect to the folks at CAA, but weighing up all the issues I personally think its better not to mention exercise programmes at all.

Marco,

I appreciate your well stated summation. The only change that I might suggest is that the dangers cannot be over emphasized. Long before death, it is my personal experience that over activity (recognized by some as neural dysfunction) can lead to permanent neural damage. I also worry that sub-clinical states of neural dysfunction may lead to significantly reduced neural capacity (reserve?) in later life that manifests it self years down the road.

 

[Martlet]

Jackie

You make some good points and that may be your experience, but I had a totally different experience. An English doctor temping at a US base in the UK recognised ME immediately (although he did not want to make the diagnosis) and referred me to primary care where I saw a doctor who ran all the usual tests to rule out other things, then said (and I quote) "Normally I would tell people as exhausted as you are to stop burning the candle at both ends, but you are a very sick woman," then referred me to Internal Medicine where the doctor recognised ME/CFS immediately but wanted to refer me to a psych just to be sure. He recognised what was wrong with me immediately - a physical illness of unknown etiology - and sent me back to Internal Medicine. Since then, I have moved to the USA, have an Internal Medicine doctor whose only fault was that he confused CFS and FMS. I have also seen British doctors when over to visit my kids. Not one - not a single one - has suggested that I have anything other than a physical illness and not a single one has suggested that I should exercise. And yes, I was very, very sick - enough to need a wheelchair for all but a walk of a few feet.

I have written the above just to illustrate that people come out of their own experiences and that we don't all have the same experience. I have only come across one doctor who didn't "believe in" ME/CFS, and he was a soon-to-retire cardiologist from India.

 

[Gerwyn]

Jackie

You make some good points and that may be your experience, but I had a totally different experience. An English doctor temping at a US base in the UK recognised ME immediately (although he did not want to make the diagnosis) and referred me to primary care where I saw a doctor who ran all the usual tests to rule out other things, then said (and I quote) "Normally I would tell people as exhausted as you are to stop burning the candle at both ends, but you are a very sick woman," then referred me to Internal Medicine where the doctor recognised ME/CFS immediately but wanted to refer me to a psych just to be sure. He recognised what was wrong with me immediately - a physical illness of unknown etiology - and sent me back to Internal Medicine. Since then, I have moved to the USA, have an Internal Medicine doctor whose only fault was that he confused CFS and FMS. I have also seen British doctors when over to visit my kids. Not one - not a single one - has suggested that I have anything other than a physical illness and not a single one has suggested that I should exercise. And yes, I was very, very sick - enough to need a wheelchair for all but a walk of a few feet.

I have written the above just to illustrate that people come out of their own experiences and that we don't all have the same experience. I have only come across one doctor who didn't "believe in" ME/CFS, and he was a soon-to-retire cardiologist from India.

I am glad you had a positive experience but I,m afraid that all the surveys consistently show that your experience is abnormal to put it mildly.