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

[Dreambirdie]

Hi Dreambirdie, we are just debating and not at one another (as far as I can concerned). If you cannot deal with the more "argumentative" threads there is no reason really to read them, or read them if having a bad day or whatever.

Personally I am not venting but trying to get across critically important points. I know others are doing this also. People can get frustrated when they feel they are not being heard, especially when their personal circumstances are very bad and some people's circumstances are worse than others.

Hi Orla--

Just want to say that I have been feeling concerned about the intensity and tone of this thread, and the effect that it has had, and continues to have, on some of the people involved in it, and on the forum in general. Sometimes, the debate here, and the mood engendered by it, boils over beyond "objective" analysis... if there really is such a thing, and lingers and spills into other threads and into the chat room, and spreads some of its more "icky" (contentious) energies into places that have nothing to do with CAA.
So whether I read this thread or not, the vibes of it reach me anyway. Believe me, I have definitely done my damnedest to not GO here. And yes, you're right, that it's probably a good idea for me to stay away.

 

[CBS]

Could it be that you are substituting yourself for Dr Bateman, since you say you feel these attacks are a threat to your wellbeing? I'm sure Dr Bateman has weathered opposition and controversy before and can take care of herself. I can assure from personal experience that one loyal, well reasoned message of support can neutralize a hundred negative rantings, as yours here have surely done for her.

I really hope that you will take care of yourself and that you will take a break from this thread, as it seems to be stressing you out a lot. I promise you, in the threads that I take part in, I will, in future, pay more attention to those mob attacks and comment on them. So take a break, leaving the door open to come back whenever you feel like it. I'd hate to have you crash and not be here with us. Come back Shane, when you feel better.

Oerganix,

As for the threat to me, I see it as larger that just Dr. Bateman. She'll do fine personally but there is research going on right now that has the potential to validate the WPI findings. I have watched this develop and knew there would be research that was critical to us all. I went to Dr. Bateman and volunteered to help as I have a background that her research department sorely needed to make the XMRV research possible. I find it ironic and maddening that the same people that are attacking her (and other researchers who I assume are of similar caliber) practically worship the WPI when those researchers are exactly the people the WPI needs to validate their findings. Those other researchers are absolutely essential to our learning more about XMRV and who at the same time they are doing broadly based research that could augment a positive XMRV association and that will be all we have left if XMRV doesn't work out. And I get lectures about science?

The apparently clueless and uninformed failing that some have done on this thread is a real threat to us all. I get the anger, I get he need for change. If someone needs to break something, don't break what little we have going our way (CAA's researchers and their research program). Go break a dish and yell at the wall. Get it out (not talking to you Oerganix), but for God's sake, when you're done, take a moment and put yourself in someone else's shoes and try being constructive for a change.

 

[Orla]

Hi Cort (still have to post another reply I am working on from last night which is more detailed. CBS I'll get to you later )

Cort
My guess is, though, that if doctors take this course then they will finally understand how problematic exercise is for CFS patients. They will come away with a new understanding of this subject.

I don't think they will, unfortunately, and the bad ones can pick and choose.

Let's put it another way. We know that most doctors are misinformed about exercise and CFS - correct? We know that at least some doctors, hopefully fewer and fewer over time, but still a considerable number, think that CFS patients just need to start exercising again. When they hear 'exercise' they think just get on a bike and your troubles will disappear.

Do you think they would think that after reading this program?

Unfortunately yes. Some may not go as extreme as the bike for some patients, but for them the streching exercises and so on that are suggested will make them worse. It could be too late by the time they realise this.

I don't think it can be assumed that fewer and fewer doctors are misinformed about exercise and CFS. It has gotten worse in the UK recently (in general) so things can move one direction and then another. Also individual doctors an buck the trend in one direction or another.

Those of us who might have managed to weed out some idiot doctors and so on in our lives should remember not to over-generalise from our own individual experience (not sure if that is what you are doing. Sometimes people forget that they have learnt to avoid certain doctors and so on, so what seems like an overall improvement in the awareness and so on is really a reflection of us organising our lives a certain way).

There would be one way to find out how doctors are picking up what is in the material, and that would be to do a survey of them (and their patients). But that would take time and money , and may not produce totally accurate results if only the better doctors replied. I think for the moment that it would make sense just to listen to what patients like me (who have experience) are telling them about the problematic parts.

And there are some things in the document which I think are inaccurate, or misleading (one problem I have is some of the arguments, or "evidence" of the CBT school are printed as fact instead of being more questioned and crticially analysed), so these should be changed anyway.

Maybe some of the issue is that you (and others) might not have seen much better stuff on exercise, but I have. To be honest my impression was that the CDC website was even better than this stuff (though I would have to compare properly to check this).

I have found in general that the good (not the crap!) UK doctors tend to be better on the exercise issue than the US ones. The bad UK doctors are worse. I think there could be various reasons for this situation, which I don't have the energy to go into,

Orla

 

[oerganix]

I agree that we all have something to contribute and we have and the CAA has shown the willingness to bend and change several times. I think part of it is a matter of tone - that sometimes physicians have not been treated with a respectable tone. This would be particularly hard to take if you know and being treated by and have respect for a physician.

Critiques - reasoned critiques - are always valuable. They're valuable on different levels. I think that the exercise programme on the CME is pretty darn good and I don't think it should harm people but its very clear that no one wants to hear about an exercise programme. That is the last thing, given our history, that they want to hear - even if its a good programme that does attempt to clear up the misconceptions of the past.

I don't really want to hear about one either! As I stated its not a concern for me personally - which is one of the more bizarre things about this thread. I don't know whether to laugh or cry. :tear::tear:

You are right, the tone sometimes gets amped up and without the body language that might neutralize it we are prone:sofa: to misinterpret sometimes. I would hope that we could all cut each other some slack.

Some docs don't deserve respect and it might be good for them to hear what we think of them...naw, probably won't make a bit of difference. (I respect Dr Bateman et al, a great deal. I don't bow down to any gods, though, knowing as I do that they all have feet of clay...at least while they're watering the lawn...)

If you don't want to hear about an exercise program either, why not come on over to this side. We have more fun anyway. :birthday hat::birthday hat::birthday hat:

And stop calling it a programME! Gives you away as a spy from across the pond!

If you don't know whether to laugh or cry I recommend laughing. You can alway break into tears in the middle: :tear:

Peach in...eacheach out...eacheach everywhere...each::Sign Peace:
Going to the garden to watch my cucumbers grow and listen to the mangos fall onto the roof...

Wow, icons run amuck!!

 

[MEKoan]

What Oerganix said.

 

[Orla]

Jackie here is the link to the section of the CME material people are talking about

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

Orla

 

[oerganix]

Oerganix,

As for the threat to me, I see it as larger that just Dr. Bateman. She'll do fine personally but there is research going on right now that has the potential to validate the WPI findings. I have watched this develop and knew there would be research that was critical to us all. I went to Dr. Bateman and volunteered to help as I have a background that her research department sorely needed to make the XMRV research possible. I find it ironic and maddening that the same people that are attacking her (and other researchers who I assume are of similar caliber) practically worship the WPI when those researchers are exactly the people the WPI needs to validate their findings. Those other researchers are absolutely essential to our learning more about XMRV and who at the same time they are doing broadly based research that could augment a positive XMRV association and that will be all we have left if XMRV doesn't work out. And I get lectures about science?

The apparently clueless and uninformed failing that some have done on this thread is a real threat to us all. I get the anger, I get he need for change. If someone needs to break something, don't break what little we have going our way (CAA's researchers and their research program). Go break a dish and yell at the wall. Get it out (not talking to you Oerganix), but for God's sake, when you're done, take a moment and put yourself in someone else's shoes and try being constructive for a change.

Hear! Hear! Putting ourselves in someone else's shoes is often a good exercise. (No pun intended...ah, well, maybe it was intended.)

Would you be interested in starting a thread describing what Dr Bateman and the Lights and whomever else you know of are up to right now? I know you mentioned that she is supplying patients for another study, or two, by the Lights, but don't recall just what they are looking at.

Now, I really AM going out to the garden to watch my cats molest my cucumber vines.

 

[oerganix]

What Oerganix said.

I want a mango icon!

 

[Dreambirdie]

Peach in...eacheach out...eacheach everywhere...each::Sign Peace:
Going to the garden to watch my cucumbers grow and listen to the mangos fall onto the roof...

This is the best thing I've heard on here in a longgggg time. Thank you!

 

[Dolphin]

I've questioned her on some of the very issues she was being criticized for and I can say with all confidence that her personal understanding of the dangers of excessive activity are second to none (see my posts about her sister).

Whether Dr. Bateman understands the dangers or not, she is too enthusiastic about recommending exercise programs for CFS, in my opinion. And it is not just based on the CME but other documents I have read of hers where she is the sole author. This relates to the issue of her writing guidelines for other doctors which, as many people agree, they can read in many ways.

In a free world, I think I should be allowed to say this.

 

[Gerwyn]

I get what you're saying Gerwyn. I'll just leave it that the CME program is very careful not to have CFS patients increase their symptoms with exercise, etc. and that any doctor who does happen to read it, and follows it's recommendations will NOT do that.

I think doctors who take the time to take the CME program will change their views on exercise - you think they may just continue on.

You know what I think one problem has been is that..... I say this program is different and some people respond by saying "Exercise! I've been killed by exercise programs in the past'...and I try to show how it is not like those programs.....and they state ...you know my life is misery NOW because of that damn exercise program I took. I then take offense because then I'm thinking they're saying that I'm suggesting that they do another horrific exercise program[..which makes me really defensive.

So I try to even more show how this program is different.... and they think 'well, what the *(&(&! he's just not getting it - he believes all exercise is good!" And I think, of course, I get it.....having been down that road before.....I'm just trying to say that this programme is not like that...that is very, very mild, etc.....that if it makes you worse then don't do it....etc. and then I get a thread like Dr. Yes's which suggests that I don't realize that exercise can have serious consequences for CFS patients and that just makes me crazy. Obviously I've engaged in this the wrong way - if I'm going to get posts like that.

Anyway I get where you're coming from. Its a problematic area and I can see how you would prefer nothing to be said about it.

Maybe with Dr. Lights cytokine and receptor testing and Staci Steven's exercise testing protocols and the cortisol testing from that researcher in Spain we'll finally be able to define physiologically when to start and when to start.

I would note that Staci Stevens has such a program. Its relies on a heart rate test - and a similar heart rate test is actually in the CME document. It gives a heart rate formula that patients can use to not surpass an given heart rate. That's pretty physiologically based



My opinion on the program differs from yours. I'm sure that a doctor could sit down to take the course and then ignore or basically defy what it says. I grant that thats possible but I would think that the great majority of physicians would read it and learn from it. That's why I think its valuable and helpful for us.

Cort drs dont read things like you and I do.They wont read any of the detail,They will read excercise and treatment and attribute their own meaning to the terms.The only safe way of doing it is to start with a disclaimer or avoid using the words excercise and CBT altogether.That way no harm can be done.If either of those approaches is not adhered to there is a real potential for serious harm or even death.first do no harm.I cant understand why this simple failsafe approach is not adopted.They can start with the disclaimer and then say whatever else they want to.It seems such a simple ,effective and safe way to proceed.

I,ve been trying to tell you that if the activity changes the heart rate it will already be too late for a patient with severe ME.This accounts for 25% of our population.That formula of subtracting a patients age from 230 and multiplying by 0.6 is a very rough guide of thumb.A persons anaerobic threhold has a number of causes.Applying such a guesstimate and a one size fits all approach could be lethal for a person with severe ME,Pretty psysiologically based is nowhere near good enough

Most physicians would not down and read it .They would just scan the document looking for information they considered pertinant.If you doubt that ask a dr JOE.They survive ob the basis of pattern recognition and schema driven processing..That is not opinion that is scientifically proven fact

 

[jackie]

good post oerganix...and wise words of wisdom to live by...."watch your cucumbers grow"!

Right now i'm watching a mama squirrel (she hangs out on my deck) standing at my living room glass doors, and banging on it with her tiny clawed hands...twitching her bushy tail in impatience. too cute! (she's ready for more of the food i give her every day).....(BUT...if she could see The Poms hiding just around the corner, staring at her in a hypnotic gaze, every hair on their Pom bodies standing on end!)

This is relaxing to me and offsets the intensity of posting on this thread (which, i must admit i'm beginning to loathe - as i wake up thinking of new ways to try and get my point across effectively - and yet knowing that I've probably failed miserably).

And i agree, we should be attempting to be constructive (in fact, i looked up the definition and i read...."build, improve, promote, develop"...so i still think a great many are trying to do that, but when the topic is so important...and the outcome can have such an impact - it's hard to let it drop and fade away.

Also...we absolutely should be thinking of others. In fact, I think often of Dr. Yes, who's stuck in a hell-hole of a nursing home. Stark contrast to my cushy environment - and the impetus for my continued appeals for necessary changes, to the best of my abilities. We each need to advocate for the weaker/more disenfranchised of our "group".

Personally...i have little hope that MY words will cause anything to change or improve...but i'd be untrue to myself if i didn't keep saying those words....hoping they are the right ones. j

 

[Gerwyn]

Gerwyn,

In my book, ANY activity that causes damage or even temporary dysfunction is excessive. Do we have to parse every word as though it were a personal slight or an attack? Have you read any of my responses to your posts? Enough!

Excessive activity has a different meaning.The meaning that doctors are likely to attribute to the terms used in the CME is the focus of the debate.That is why the choice of words is so important.The meaning something has in your book and in a doctors are different.They may appear to use the same words as we do but rather like a lawyer these words have a specific definition which is paragidm specific.Excercise and treatment are words which have a specific meaning to a doctor which is different from their normal everyday meaning.There was no slight or attack intended but the choice of terminology in the CME document is of vital importance if GP,s are going to interpret the content in the way the authors intended.Primary care physicians spend their time in a diffwrent cognitive mode than specialists that is why both complain about difficulties in communicating with each other.

 

[CBS]

Whether Dr. Bateman understands the dangers or not, she is too enthusiastic about recommending exercise programs for CFS, in my opinion. And it is not just based on the CME but other documents I have read of hers where she is the sole author. This relates to the issue of her writing guidelines for other doctors which, as many people agree, they can read in many ways.

In a free world, I think I should be allowed to say this.

Tom, No problem with you saying that at all. It's the very vocal minority that have gone much further that I have a problem with. I think we're all learning to be more careful with how things are worded. The only caution I might add to your statement is that a written recommendation is a static document. Assuming that she would give the same advice today, or that she wouldn't qualify her advice in the context of this conversation might not be a sound assumption. That said, making recommendations in a field like CFS is a very slim limb to climb out on and it must be done with great care.

 

[Orla]

Cort drs dont read things like you and I do.They wont read any of the detail,They will read excercise and treatment and attribute their own meaning to the terms.The only safe way of doing it is to start with a disclaimer or avoid using the words excercise and CBT altogether.That way no harm can be done.If either of those approaches is not adhered to there is a real potential for serious harm or even death.first do no harm.I cant understand why this simple failsafe approach is not adopted.They can start with the disclaimer and then say whatever else they want to.It seems such a simple ,effective and safe way to proceed.

I,ve been trying to tell you that if the activity changes the heart rate it will already be too late for a patient with severe ME.This accounts for 25% of our population.That formula of subtracting a patients age from 230 and multiplying by 0.6 is a very rough guide of thumb.A persons anaerobic threhold has a number of causes.Applying such a guesstimate and a one size fits all approach could be lethal for a person with severe ME,Pretty psysiologically based is nowhere near good enough

Most physicians would not down and read it .They would just scan the document looking for information they considered pertinant.If you doubt that ask a dr JOE.They survive ob the basis of pattern recognition and schema driven processing..That is not opinion that is scientifically proven fact

Excellent points Gerwyn
Orla

 

[Dolphin]

Off-topic

Right now i'm watching a mama squirrel (she hangs out on my deck) standing at my living room glass doors, and banging on it with her tiny clawed hands...twitching her bushy tail in impatience. too cute! (she's ready for more of the food i give her every day).....(BUT...if she could see The Poms hiding just around the corner, staring at her in a hypnotic gaze, every hair on their Pom bodies standing on end!)

Sorry for what might be a stupid question but what's a pom?

 

[CBS]

Hear! Hear! Putting ourselves in someone else's shoes is often a good exercise. (No pun intended...ah, well, maybe it was intended.)

Would you be interested in starting a thread describing what Dr Bateman and the Lights and whomever else you know of are up to right now? I know you mentioned that she is supplying patients for another study, or two, by the Lights, but don't recall just what they are looking at.

Now, I really AM going out to the garden to watch my cats molest my cucumber vines.

Oreganix,

Thanks for the invitation. I don't that I have much to add beyond what was posted in the PR story "A Light in the Darkness: Good News Ahead for XMRV?"

Also, she recruited Dr. Singh to test the Lights' exercise subjects for XMRV. Here's a link to a thread on Ila Singh and her PloS One article on anti-retrovirals that block XMRV replication.

http://www.forums.aboutmecfs.org/sh...-Inhibitor-of-XMRV...&highlight=Singh+PloSOne

http://www.forums.aboutmecfs.org/sh...tion-drugs-and-animal-studies-(article-video)

TV Interview: http://www.ksl.com/index.php?nid=148&sid=10239583&s_cid=E0002

 

[MEKoan]

I want to thank everyone for facing this thread again and again in an attempt to settle this very difficult issue. It has been a sometimes painful experience for everyone.

There remains a basic disagreement regarding what the take-away will be for your average doctor. Many of us, myself included, believe that what "exercise" means and how it is understood in a clinical setting is so ingrained in the mind of the practitioner that it should not be mentioned as part of a strategy to address the needs of the CFS patient at this time. The danger of deconditioning is not as great as that of inappropriately applied advice about increased activity.

Even the best, most aware and enlightened doctors cling stubbornly to the idea that exercise is always beneficial. Please see the following post from our own DrDonnica for an example of that in action. While few doctors are as intimately aware of the realities of ME/CFS, I believe even she cannot completely understand the potential harm that can result from exercise when one is ill. Below she discusses her exchange with Dr Oz re "exercise".

Bold mine.

Thanks for calling this segment to my attention. Dr. Oz's "agenda" is patient empowerment, & he really "wants" to call attention to things patients can do to help themselves. While I appreciate his motivation & his boundless enthusiasm, he sometimes jumps to an untenable conclusion. I was able to influence this A LITTLE on the show. For example, one of the things they wanted to cover was a list of "solutions". I argued that there aren't any known "solutions" currently, so I got them to change that to "tips". I "gave in" on offering some nutritional tips & went with the 3 things he asked me to cover there, but you'll see that I really stumbled. He really wanted to say "do as much exercise as you can" & I got him to couch that as "even if it's only walking to the mailbox". While it is true that many PWC do better with MILD exercise, many can't get to step one. Nor is this a "treatment" or a "cure" (as we know), but something that helps A LITTLE BIT. (I thought it was a major victory yesterday that I got my son on the treadmill for 5 minutes yesterday!). I will warn you that I was specifically told that we didn't have time to go into the symptoms of the case definition beyond fatigue (but I did jump in when the patient talked about cognitive impairment, so I offered up "brain fog"), but that they would post "more info" on their website (I offered to write the article, but wasn't taken up on that yet). This having been said: I do agree that even on the Fox interview--even though the tone was inappropriately light-hearted--that any increased awareness of CFS as a "real" disease--especially in association with the biologically based viral concept and from "America's favorite doctor"--is helpful overall. And when these news outlets get letter/emails from patients concerned about incorrect or misleading information, they really do pay attention.

We will need to be patient with each other as we work through this. If DrDonnica can put her son on a treadmill during a relapse, we know that doctors really don't grasp the interplay of excercise and remission/relapse in ME/CFS. And, if we find it a challenge to communicate the complexities of this issue to each other it is understandable that the uninitiated could easily get it badly wrong.

Nobody said this was easy.

Peace to all the lovely people!

Koan

 

[Orla]

CME and exercise

Just a few answers to stuff Cort posted yesterday and the day before that.

Cort
What I'm saying is that doctors who read the CME will finally understand that CFS patients should not engage in aerobic exercise

Well unfortunately the CME actually advocates aerobic activity (much to my horror)

CME

Encourage patients who can tolerate greater levels of exercise to engage in movement therapies like yoga, tai chi, and qigong and light aerobic activity like short walks and swimming.

...Graded exercise may include both anaerobic and aerobic activities and can be effective in improving function and decreasing fatigue

...Encourage patients to consider aerobic activities they can do close to home, like walking for short intervals or swimming in a backyard pool

Cort

doctors...will finally not ask CFS patients to engage in anything that exacerbates their symptoms or makes their health worse; ie will not ask you to do what other doctors have done

...There's nothing in here that suggests Drs. will push patients to exercise

They exercise phobia stuff will, and the (awful) sections on what exercises severe people should be doing will encourage doctors to push patients and get them to do more than they should. There NO EVIDENCE that exercise can lead to functional improvement in anyone let along the severe patients who have not had this research done on them. The section below is pure speculation and ought to be removed as it is dangerous:

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

More below,
Orla

 

[Dolphin]

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.

(Leaving aside what Cort thinks which I've lost track of a bit at this moment in time) I think you make many good points.