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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?

Dolphin

Senior Member
Messages
17,567
Rheumy=FM
They're like that over here too (i.e. if you go to a rheumatologist with ME/CFS symptoms, they'll diagnose you with FM (or if they don't do explicitly e.g. you mention ME or CFS, that's still how they'll see you in their head).
And PwFM=somebody who needs advice to exercise more.
 

gracenote

All shall be well . . .
Messages
1,537
Location
Santa Rosa, CA
Cort:
(1) Your estimated percentages border on hyperbole, if the experiences documented on this forum and elsewhere are any indication. I don't think reading this CME could alter significantly (or at all) that kind of widespread recalcitrance and dogma.

(2) Even if we were to consider your estimations to be accurate, do you consider it acceptable that the 20% of "resistant" physicians reading the CME will now have additional information - from a CFS advocacy group no less - to convince them that they are right and to further deflect their patients' arguments? Surely, that is unacceptable damage.

(3) you forgot that the CME contains all that drivel about kinesiophobia, avoiding activity, "underdoing it", etc, that could negatively influence any physician's perspective on ME/CFS patients and activity or exercise. I don't know why those parts were ever allowed in the CME. Surely the First Commandment of any ME/CFS advocacy group is "Thou Shalt Not State or Imply That Any Part of a PWC's condition is All In Their Head!"?

Cort:
You are saying, essentially, "I don't think many physicians are like that." While lots of others have been saying "trust me, I have HAD many physicans like that!" Perhaps without a controlled study we cannot prove that all those physicians would still be 'like that' after reading the CME, but it is safer to conclude from the many documented experiences that a very significant number still would be.

Furthermore, the CAA is supposed to be OUR national advocacy organization. We don't have to settle for 80% understanding (your rhetorical guess-timate). We can have our cake and eat it too, to repeat a cliche. Why can't the CAA make it clear enough so that 100% will understand it? I don't want to risk anyone getting hurt. Of course the CAA can't stop all the iatrogenic harm that goes on out there, but they can at least do the simple things right - such as make physician education material that is aimed at that 100% effectiveness, taking into account the realities of physician bias, misconceptions, or lack of wisdom (the polite way to put it! ;))

Thank you Dr. Yes. You articulated this well. (I apologize that this quote function leaves out Cort's quotes. To reread those, you will need to go back to the original post.)

And thank you tomk.
 

jackie

Senior Member
Messages
591
Tom...Coincidentally, as I was looking through my home library, I came upon a little book from 1993 called simply "ARTHRITIS" - there was a chapter on Fibromyalgia...they recommended as the treatments - heat, massage, muscle stretching and AEROBIC EXERCISE ("Such treatments may be all some people require to relieve their symptoms.") They also suggested antidepressents for improved sleep patterns.

In 1993 researchers thought the cause of FM could be Neurochemical abnormalities leading to sleep disburbances, in turn leading to fatigue, pain and depression, a problem with muscle energy metabolism (the muscle cells starved for oxygen are causing the pain), various infections, thyroid disease, head trauma, and emotional stress. They also concluded that some people have FM triggered by lyme disease.

They close the chapter with "To confuse matters even more, some researchers think Fibromyalgia and Chronic Fatigue Syndrome are the same condition."

Just look how far we've come in 17 years.
 

Mithriel

Senior Member
Messages
690
Location
Scotland
I'm not trying to jam this in anyone's face. I understand the worry about talking about 'exercise' - that it will be misinterpreted. One way to combat the misunderstanding about exercise and CFS, though, is to overcome it with information. That's what these physicians are clearly trying to do.

I'm just trying to point out that these are very mild programs; they simply attempt to keep a patient conditioning as maximal as possible within the framework of their illness. They are not saying exercise will cure CFS and they are careful to state that it can do real harm - as anyone with CFS is obviously aware. They all propose something very similar to what is presented in the CME program.

But they are very clear that very mild exercise - when its appropriate and does not exacerbate symptoms - is helpful. I personally do not think these are very bold statements. I think they're common sense statements. I don't anything we should take umbrage at. It makes sense to me that very mild 'exercise', to the extent that you can tolerate it, is helpful. That has been my experience.

The problem with 'exercise' and CFS is that other types of exercise programs have been shoved down CFS patients throats. These are not them. These are very mild. If every doctor felt like these doctors do - we'd all be in alot better shape.

Each one has been practicing for many years and each one has seen thousands and thousands of patients and each one is highly regarded in the community.

These things that you are quoting with approval actually horrify me. I think we agree on lots of things and you are trying to understand but there is a divide in outlook on this thread that it is good we are trying to thrash out. I wish I could find the words to get to the root of our disagreement.

These opinions from doctors (not just these particular ones, all the ones you have quoted) worry me because they are all focussed on IMPROVING us and our fitness.


Why should we have to do any sort of fitness program, no matter how mild? If we get enough rest we will feel better and be more active. The advice should be to do less and help and advice should be given to enable us to do that. I got a stairlift for a different reason, but not having to struggle up the stairs has meant that I have more energy to cook formyself, for instance.

So the advice in a CME should be

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

also

The risks of deconditioning in patients are minimal compared to the risks of overactivity which can lead to a permanently bedridden state or even death

I agree that some patients who are improving may want scientific, proven ways of adding to their fitness without relapse and I think many of the physicians you quote are doing good work in that.

so

A patient who asks for advice about exercise should be told to start very slowly and to stop immediately if they experience any increase on symptoms. (Basically the advice that is given now)

As Tom and Orla have said, the emphasise in the UK and US has been different. Myalgic Encephalomyelitis was always seen as a disease of exercise. CFS in the US has been seen as a disease of the immune system. These ideas are coming together in a very useful way, but I think that all doctors are not well informed about them yet. (That is not an attack, just a statement)

They are also right that the US doctors may not know how bad some of the studies have been. Remember it was only a few years ago or less that the people from the UK had to warn the Americans about Peter White.

Mithriel
 
G

Gerwyn

Guest
These things that you are quoting with approval actually horrify me. I think we agree on lots of things and you are trying to understand but there is a divide in outlook on this thread that it is good we are trying to thrash out. I wish I could find the words to get to the root of our disagreement.

These opinions from doctors (not just these particular ones, all the ones you have quoted) worry me because they are all focussed on IMPROVING us and our fitness.


Why should we have to do any sort of fitness program, no matter how mild? If we get enough rest we will feel better and be more active. The advice should be to do less and help and advice should be given to enable us to do that. I got a stairlift for a different reason, but not having to struggle up the stairs has meant that I have more energy to cook formyself, for instance.

So the advice in a CME should be

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

also

The risks of deconditioning in patients are minimal compared to the risks of overactivity which can lead to a permanently bedridden state or even death

I agree that some patients who are improving may want scientific, proven ways of adding to their fitness without relapse and I think many of the physicians you quote are doing good work in that.

so

A patient who asks for advice about exercise should be told to start very slowly and to stop immediately if they experience any increase on symptoms. (Basically the advice that is given now)

As Tom and Orla have said, the emphasise in the UK and US has been different. Myalgic Encephalomyelitis was always seen as a disease of exercise. CFS in the US has been seen as a disease of the immune system. These ideas are coming together in a very useful way, but I think that all doctors are not well informed about them yet. (That is not an attack, just a statement)

They are also right that the US doctors may not know how bad some of the studies have been. Remember it was only a few years ago or less that the people from the UK had to warn the Americans about Peter White.

Mithriel

The trouble with drs is what is said and what is heard are totally different.Theyhear what they are conditioned by their training to hear. The written and spoken word is interpreted to fit what they already know or believe to be true.

Communication with drs is a complex business that the words in a CME cant hope to achieve with any degree of accuracy

Drs will convert information to misinformation without any deliberate attempt but because of the way their minds have been consructed by their training.

This explains the neurocognitive psychological edidence of what I say.
Bottom-up and top-down processing in reading

In the case of reading, as with other cognitive processes, psychologists have distinguished between two kinds of processing. Bottom-up processes are those that take in stimuli from the outside world -- letters and words, for reading -- and deal with that information with little recourse to higher-level knowledge. With top-down processes, on the other hand, the uptake of information is guided by an individual’s prior knowledge and expectations.


In M. Aronoff and J. Rees-Miller (Eds.), Blackwell Handbook of Linguistics (pp. 664-672). Oxford, England: Blackwell. 2001
 
G

Gerwyn

Guest
but, but, but he sputters! The CME is full of warnings about posting exertional malaise and the CAA Biobank requires that CFS patients have postexertional malaise in the other study. They're the first ones to do this. I really think you're both on the same playing field regarding this issue?

This is the problem facing the CAA

The trouble with drs is what is said and what is heard are totally different.Theyhear what they are conditioned by their training to hear. The written and spoken word is interpreted to fit what they already know or believe to be true.

Communication with drs is a complex business that the words in a CME cant hope to achieve with any degree of accuracy

Drs will convert information to misinformation without any deliberate attempt but because of the way their minds have been consructed by their training.

This explains the neurocognitive psychological edidence of what I say.
Bottom-up and top-down processing in reading

In the case of reading, as with other cognitive processes, psychologists have distinguished between two kinds of processing. Bottom-up processes are those that take in stimuli from the outside world -- letters and words, for reading -- and deal with that information with little recourse to higher-level knowledge. With top-down processes, on the other hand, the uptake of information is guided by an individuals prior knowledge and expectations.

In M. Aronoff and J. Rees-Miller (Eds.), Blackwell Handbook of Linguistics (pp. 664-672). Oxford, England: Blackwell. 2001

If the CAA want to get their message across to members of the medical profession then they will have to adopt the same tactics as the CDC.They are now using the communication techniques used by the pharma industry.In the recent "paper" by Reeves and cronies they hired stand spots at medical conferences and paid drs to attend their stand and fill in their "awareness" questionaires "in front of CDC clones who could prompt them if required.The doctors who got the answers "right" got up to 50 bucks in "honorariums".A CME aint going to match that level of direct indoctrination.If the CAA were to organise a series of medical seminars and give key influential specialists honoraria to attendand expose them to Nancy Klimas or Paul Chanyor even better dr Petterson.then true knowlege about ME amounst the specialist population of the USA would increase exponentially.These are the tactics the pharma companies use which makes them billions of dollars.The CDC have cottoned on It is time the CAA did as well.
 

oerganix

Senior Member
Messages
611
When clinicians (or anyone else) merge CFS and FM together to give exercise advice, I generally don't trust them. Some people with Fibromyalgia clearly don't have the exercise intolerance problems associated with ME/CFS.

Yes, this was very clearly shown in the Drs Light's exercise study published in the Pain journal.
 

MEKoan

Senior Member
Messages
2,630
Gerwyn said:
The trouble with drs is what is said and what is heard are totally different.Theyhear what they are conditioned by their training to hear. The written and spoken word is interpreted to fit what they already know or believe to be true.

Communication with drs is a complex business that the words in a CME cant hope to achieve with any degree of accuracy

Drs will convert information to misinformation without any deliberate attempt but because of the way their minds have been consructed by their training.

I do not understand why this is so difficult to understand! I really don't.

If you doubt these words, ask a doctor. Don't ask a doctor you're seeing as a doctor, ask a doctor you are speaking to as a person. They know this about themselves. It's not a slam, it's a reality. A GP must process a huge amount of information about a wide variety of ailments and it is simply impossible for them to attend to each word the way the CME would require for true understanding.

Excuse me while I go bang my head against something.

Ohm!
 

oerganix

Senior Member
Messages
611
Excellent idea! Instead of paying the lobbyist, or in addition to, pay some docs who treat ME/CFS to attend a booth at medical conferences and give docs money prizes for getting the right answers to ME/CFS quizzes, answers to be found in brochures at the booth and/or by talking with our CFS docs. Give them a laminated copy of the quiz they did so well on, as a souvenir. Maybe they'll hang it on the wall with their diplomas... But, pleeeeeze, get the quiz right in the first place.

From Gerwyn: "If the CAA want to get their message across to members of the medical profession then they will have to adopt the same tactics as the CDC.They are now using the communication techniques used by the pharma industry.

In the recent "paper" by Reeves and cronies they hired stand spots at medical conferences and paid drs to attend their stand and fill in their "awareness" questionaires "in front of CDC clones who could prompt them if required.The doctors who got the answers "right" got up to 50 bucks in "honorariums".A CME aint going to match that level of direct indoctrination.

If the CAA were to organise a series of medical seminars and give key influential specialists honoraria to attendand expose them to Nancy Klimas or Paul Cheney even better dr Peterson.then true knowlege about ME amounst the specialist population of the USA would increase exponentially.

These are the tactics the pharma companies use which makes them billions of dollars.The CDC have cottoned on It is time the CAA did as well.
 

jackie

Senior Member
Messages
591
With all the debate...does anyone know if there is even a REMOTE possibility that the CME material will be removed, changed re-structured, taking readers wishes into account? Or will it stands as is?

This is such a good thread, (albeit frustrating to all concerned!)...so many have put hours into dissecting the material almost line by line - giving REASONS (and studies and facts) that can be clearly understood, as to the unacceptabilty of the recommendations in many patients opinions...countless others have written of their personal experiences of "discrimination" (that's the only term my brain could come up with! I'm sure there is a better word, a more accurate one....it just FEELS like discrimination when you are repeatedly subjected to these exercise/activity/de-conditioning warnings and recommendations).

So...is the CAA taking any of the concerns seriously?. Is there any hope? What next? I'm perfectly willing to keep repeating MY objections as much as I need to - fears of the potential risks...of the cme material as it now stands (and I did read it several times)...what more can/should we do?

Would it help to post the entire document and examine it line by line (this thread is so long...can't remember if that has already been done? I can hear the collective groans from EVERYONE...on all sides of this "debate"!) or would that be just a WASTE of time (and I can almost hear the emphatic YES'ES! as well) - AND we've already had many excerpts posted.)

Is the CAA re-examining the material as it stands now - based on the "furor" it has caused?

Will the CAA overlook STUDIES they've used to put this doc in place...in favor of changing it to suit a large group of patients, each with their own "take" on the subject?

Will the CAA overlook the cost factor (whatever it is) in changing, deleting or modifying the CME Education course?

IMO..."flogging a dead horse" doesn't apply to the DEBATE that has taken place here (the debating is absolutely necessary imo)...but does it apply to our HOPES that the material will be re-examined, deleted or changed?

What is MY/our responsibility...how far do I go - what more can I do, in demanding a change, concerning what many believe to be at the "core" of future health care protocols, for me/cfs?

What do I owe to myself, and more importabtly, to others even farther down the "scale" than me...as to advocating/fighting for better understanding and the correct treatments...in a world that has failed miserably to do that for "us", to date?

Now what? "After the fact" changes don't work very well....we all know that (but they are better than NO changes)

These are MY questions this morning. j
 

kerrilyn

Senior Member
Messages
246
Originally Posted by tomk
When clinicians (or anyone else) merge CFS and FM together to give exercise advice, I generally don't trust them. Some people with Fibromyalgia clearly don't have the exercise intolerance problems associated with ME/CFS.

Yes, this was very clearly shown in the Drs Light's exercise study published in the Pain journal.

I witnessed that first hand. I was diagnosed with Fibro and went through a GET program. I could not do it, while other participants could. A majority did not seem to experience the same challenges that I (and a few others) did. Some even improved significantly. In some cases, former participants stated, with time, they were able to return to work and able to exercise on a treadmill for 1/2-1 hour each morning before work!?! For the longest time I couldn't figure out what was wrong with me, why I couldn't make this work for me too.
 
R

Robin

Guest
the little tree

There's a patio outside my door, and about 20 steps away a little dogwood sapling grows.

A year ago I spent a lot of time in the yard with my dog. I helped plant the dogwood, mulched it, watered it, fussed over it.

Last summer my health worsened dramatically. I got very ill and became bedridden. I was used to taking regular but not daily walks, and I made it my goal to walk to the tree. I started walking toward it but realized that it was a mistake. About halfway there I sat down; it felt like something broke inside of me. The little walk which would have been nothing to me when I was moderately ill became excruciating and punitive. It was a month before I felt recovered from it.

Several months later I felt I could walk to the tree. I did, and it was OK. I didn't "work up" to it, I didn't build anything. The underlying disease process lightened up a little and allowed me to take those 20 steps. I walked to the tree often for a few weeks, and even sometimes to the crabapple tree that was even farther.

Later, after a series of sinus infections, my health worsened again. I haven't walked to the tree since February. I'm looking at it right now out my window.

Sometimes I can stand at the sink and do some dishes. Sometimes I can't. Sometimes I can make toast for lunch. Some days I can't.

I am acutely ill. There is nothing regular about my daily energy level. If you're not stable, you simply can not do regular activity without putting yourself at risk on your bad days. This is tough to understand but it's very important.

Cort said:
Exercise slowly without overexercising to prevent relapse.

I honestly don't know what this means. This seems to be the theme of the "good" recommendations. It's just not applicable in my situation.

Cort said:
But they are very clear that very mild exercise - when its appropriate and does not exacerbate symptoms - is helpful. I personally do not think these are very bold statements. I think they're common sense statements. I don't anything we should take umbrage at. It makes sense to me that very mild 'exercise', to the extent that you can tolerate it, is helpful. That has been my experience.

That's fine, but, I think the points that people have been trying to get you to understand is that:

1) "mild" is relative; because of the spectrum of severity in ME/CFS please don't make assumptions about what people can do
2) there needs to be a sufficient warning about the risk of serious damage with any mention of exercise. Think of it like poison. Some can tolerate higher doses than others.
3) It's more important to avoid serious or permanent relapse than condition.
4) exercise-based activity diverts energy away from functional activity (which can increase dependence for the severely ill)

Having been on both ends of the spectrum, I agree.

Having read some of those recommendations that you cite, I would think that it's safe to do a lot more than I can. Having been ill for many years I know better, but newer patients do not. I'm not besmirching the doctors that make the recommendations, but, I think the exercise situation for the severely ill is difficult to grasp.
 

jackie

Senior Member
Messages
591
Good post Robin...very good example of what many of us experience! I'd re-post my struggles with the downward progression from painting/sculpting>hand-sewing>knitting>typing with two hands>typing with one hand> ad nauseum! BUT...that really WOULD be "flogging a dead horse" (especially since I most likely won't be doing those activites again)

Your little Dogwood tree is truly a "sign post" for you...some days we "can" and some days we "can't"...
and sometimes we never will again.
And it has NOTHING to do with how much we want it.
And NOTHING to do with how much "someone else" wants it FOR us.
(speaking of health care Professionals) imo, j
 

Orla

Senior Member
Messages
708
Location
Ireland
Excellent points Robin.

This is a good comment on CBT/GET from a UK doctor. (The CME talks up both CBT and GET.)

"Two forms of treatment are CBT and GET. CBT
is a psychological treatment. Its application in what
is certainly an organic disorder is basically irrational.

Its putative mode of action is based on the
proposition that patients with ME/CFS feel unwell
because they have an 'abnormal illness belief', and
that this can be changed with CBT.

It has never been proven to be helpful in the
majority of patients with ME/CFS. GET comprises a
regime of graded exercise, increasing incrementally
over time. It has been almost universally condemned
by most patient groups. A number of patient surveys
have shown it to be, at best, unhelpful, and at
worst, very damaging.

Its application is counter-intuitive, particularly when
one of the most debilitating and well recognised
symptoms of ME/CFS is post-exertional malaise
which can put some patients in bed for days after
relatively trivial exertion"

(Dr William Weir, Consultant Physician, November
2007)
http://www.meactionuk.org.uk/JR_Statements_-_extracts.htm
 

Dolphin

Senior Member
Messages
17,567
If the CAA want to get their message across to members of the medical profession then they will have to adopt the same tactics as the CDC.They are now using the communication techniques used by the pharma industry.In the recent "paper" by Reeves and cronies they hired stand spots at medical conferences and paid drs to attend their stand and fill in their "awareness" questionaires "in front of CDC clones who could prompt them if required.The doctors who got the answers "right" got up to 50 bucks in "honorariums".A CME aint going to match that level of direct indoctrination.If the CAA were to organise a series of medical seminars and give key influential specialists honoraria to attendand expose them to Nancy Klimas or Paul Chanyor even better dr Petterson.then true knowlege about ME amounst the specialist population of the USA would increase exponentially.These are the tactics the pharma companies use which makes them billions of dollars.The CDC have cottoned on It is time the CAA did as well.
Nice idea but I don't know many (or maybe any) groups who can really afford this. Perhaps if drugs get FDA approval, it could be considered but there can be problems there too.
 
G

Gerwyn

Guest
Nice idea but I don't know many (or maybe any) groups who can really afford this. Perhaps if drugs get FDA approval, it could be considered but there can be problems there too.

Tt does not cost that much to hire standspace at medical conferences.It is normally within the budget of an individual pharma rep.The CAA are wasting god knows how much money in ineffectual lobbying. What tangible benefits have their current approach produced? All you would be doing is diverting momey away from activities which are plainly not working.How much extra research funding has been allocated to ME as a result of their lobbying webinairs and so forth.Has this benefitted ordinary patients in any way at all?If it works for pharma and the CDC why not for us?
 

Dolphin

Senior Member
Messages
17,567
Tt does not cost that much to hire standspace at medical conferences.It is normally within the budget of an individual pharma rep.The CAA are wasting god knows how much money in ineffectual lobbying. What tangible benefits have their current approach produced? All you would be doing is diverting momey away from activities which are plainly not working.How much extra research funding has been allocated to ME as a result of their lobbying webinairs and so forth.Has this benefitted ordinary patients in any way at all?If it works for pharma and the CDC why not for us?
It may simply be value for money for pharma - they may get more money back in return from drug sales. With a group, you don't get that money back.

If it was $10, I might have no problem. $50 seems a lot to educate an individual doctor.

Related issue: money for research, as well as getting us more knowledge about the illness, can have a PR/educational value: some findings can be picked up by the lay media, educating the population and also individual doctors who "consume" the lay media.
Similarly, articles in journals are read by the people who read the journals. And then can get quoted many times into the future. So doctors and other professionals can learn from them.
 
G

Gerwyn

Guest
It may simply be value for money for pharma - they may get more money back in return from drug sales. With a group, you don't get that money back.

If it was $10, I might have no problem. $50 seems a lot to educate an individual doctor.

Related issue: money for research, as well as getting us more knowledge about the illness, can have a PR/educational value: some findings can be picked up by the lay media, educating the population and also individual doctors who "consume" the lay media.
Similarly, articles in journals are read by the people who read the journals. And then can get quoted many times into the future. So doctors and other professionals can learn from them.

It hasnt worked so far! 50$ is nothing to educate a specialist who will in turn educate many others who see him/her as a key opinion leader. This vastly increase the chances of sufferers getting treated properly which at the end of the day is the name of the game. Publicity for its own sake achieves nothing .Drs pay no attention at all to the lay media and very few read journals especially research in our area which most consider of little or no value. Spend the money on directly interacting with drs rather than politicians who have thus far delivered nothing but honeyed words.Talk is cheap and costs them nothing
 

Wayne

Senior Member
Messages
4,300
Location
Ashland, Oregon
What Does CME Stand For ?

I'm thinking about replying to this thread, but would first like to find out what CME stands for (not kidding :Retro redface:). I've spent a few minutes trying find out, and am starting to exhaust myself for my efforts.

In that regard, I almost have to concern myself more with "mental exercise" than physical exercise these days. Anybody else have similar experiences?

Could anybody give me a quick reply on the CME? Thanks much. :Retro smile:

Wayne