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

[jackie]

Our combined "TWO CENTS" worth of opinions in these 1,556 posts equal=$31.12 us dollars. That's about all my weary brain can come up with now.

(I feel like a plate of dull scrambled eggs in the midst of Beautiful Fluffy Souffles and Lovely Yummy Quiches'!....so many great minds working overtime to find a way for us all!...and MY pitiful one is fried!)

Thank you Maarten, for responding and summing it up! (a very good point about "losing face" as well as the perceived extra work involved in any re-do)...and thank you again Kim, for organizing the quotes!

sigh.......jackie

 

[jackie]

I THINK it stands for "CONTINUING MEDICAL EDUCATION" (right?) I have the link to the material (thanks to Orla) which is posted on MEDscape...but since I'm notoriously bad at giving links (don't know why I can even get THAT straight?...they kept telling me how to do it, but...?:Retro redface...can somebody else help Wayne find it?

imo, It's important material to read through (I did, several times, rather than basing my opinions strictly on bits and pieces of disjointed text re-posted)

jackie

Wayne, re: your concern with "mental exercise"...see my reference to me and a plate of scrambled eggs.

 

[Dr. Yes]

Hi Wayne - short answer: "Continuing Medical Education" credits.. the CME in quesion was a course a medical professional could take online to earn them; see also http://en.wikipedia.org/wiki/Continuing_medical_education#Criticism_of_industry_sponsorship

The long answer, from cfids.org:

Medscape CFS Course Makes an Impact
Updated March 30, 2009

In 2008 the Association secured private funding to partner with Medscape, the world’s leading source of health information for consumers and health care professionals, to develop a clinical update on CFS. Using the CFS Toolkit for Health Care Professionals as a starting point, the Association collaborated with Medscape editors and expert clinicians Lucinda Bateman, MD, and Charles Lapp, MD, to deepen clinically relevant information and augment the material with case studies and vignettes.

The course was posted on Medscape on October 9, 2008 and was marketed to physicians, physician assistants, nurses, pharmacists and other clinical staff in 19 general and specialty medical professions. Through March 30, 2009, the course has attracted 15,309 professionals who have completed the program for credit, with about 52,000 reading the material for informational purposes. According to Medscape’s editorial director, “This is a fabulous number and indicates the popularity of and need for information on this topic.” By contrast, the CDC’s online CFS continuing education module issued just 1,533 continuing education certificates in its first four years of availability.

A key component of the Medscape collaboration was a study performed by Outcomes, Inc. to compare the knowledge and attitudes of professionals who took the course with a representative sample of professionals who had not taken the course. The study showed that health care providers who participated in the Medscape CME program on CFS treat an average of three patients per week with CFS and are 46% more likely to make evidence-based choices about caring for these patients, specifically in diagnosing CFS, distinguishing it from depression, helping patients maintain function through aggressive symptom management and utilizing appropriate non-pharmacologic interventions as part of a treatment program. 85% of those who took the course indicated it would change their practice.

The study also showed that completing the course had a significant impact on the participants’ confidence in diagnosing and managing CFS. The study concluded that “some 36,000 patients seen each week with CFS will benefit from improved evidence-based care provided by the professionals who have taken the course to date.”

Encourage your health care provider to take the course at http://cme.medscape.com/viewprogram/17442 (or simply tell him/her to search for “chronic fatigue syndrome” on Medscape’s CME site). While the evaluation study is now complete, the course is available for continuing education credit through October 2009.

The Association gratefully acknowledges the financial support received from a family that wishes to remain anonymous, as well as the assistance provided by Drs. Bateman and Lapp to make these popular and effective resources available to medical professionals worldwide.

 

[jackie]

The doctor is in! (thank god....and your little "post office" for little "PM's" is full up!)....j

 

[Dr. Yes]

Yes.. I have a hard time throwing away all your little love notes...

 

[jackie]

oooooooooh, what you said! The man with the scary hair doing a Gandalf imitation holding an armload of Pomeranians (YOU know who I mean) is going to get you and clean your clock...if you get my drift. Maybe mine too, now.

 

[Dreambirdie]

Where am I? I wandered in by accident, and actually found some goofiness on this of all threads.

A few days ago, it felt all spikey and sharp and pointed in here.

Thank you Jackie... for helping to smooth out some of those sharp edges. :Retro wink::Retro smile::Retro smile:

 

[Dreambirdie]

Yes.. I have a hard time throwing away all your little love notes...

Oh yeah, and what about mine... have they all been stuffed into the back of the sock drawer?

 

[Dr. Yes]

Jackie - if Gandalf wants a piece of me he'll have to put away his Pom Poms first

DB - I.. didn't see you there! She mean nothing to me, you're the only one I ever dream about.

(Jackie - She means nothing to me, you're the only one I ever dream about..)

(DB - No seriously, I was just saying that because she is crazy, you're the only one I...

 

[Dreambirdie]

Okay Doctor, now your signature is beginning to apply to you. :Retro tongue::Retro tongue::Retro tongue:

 

[jackie]

DB...no prob, I live to serve you!

And about those letters and the sock drawer (as we say in Southern California)...... DANG, DUDE!?

j

 

[Roy S]

Folks, speaking for myself today and anyone else like me not having a good day, having to sift through so much off-topic stuff in recent pages uses up very limited mental stamina. Could some of it be done elsewhere like the community lounge?

 

[Wayne]

CME and Exercise

A somewhat sobering realization I came to several years ago was that there seems to be virtually no limit to how far PWCs' health can deteriorate. I based this realization on my own experiences and those of other PWCs.

I also realized that perhaps the number one catalyst to further deterioration was usually forcing oneself to go beyond one's capabilities, including doing various kinds of exercise. I myself have gone through periods of time where I was hardly able to do anything at all physically. And I fully realized that I shouldn't even try.

I've learned that any exercise (I would include any physical activity, including getting out of bed) should be done very carefully. For me, doing things carefully means trying to find a rhythm as to when the best time is to attempt various activities (mental or physical). If I force myself to do things when I'm not feeling in rhythm, I feel I've injured myself.

I'm constantly weighing what my own envelope is on any given day, or moment. If I'm alert, I can usually find moments during the day (or week) when I can do a little something without harming myself. In this regard, I consider myself extremely fortunate, as I know there are many here who cannot do that. Being able to walk occasionally feels like a huge blessing in my life.

I feel the same way about mental exercise, reflective exercises (thinking of various events or people in my life), humorous exercises, even creative or aesthetic exercises. Seems there is a time and place for everything, and finding a rhythm that helps me flow naturally in and out of anything I do works best for me.

I feel physical exercise as referred to in the CME publication should be considered on a VERY individual basis. In that regard, it seems the onus is on us, as it has always been, to inform and educate our physicians of this very basic principle of ME/CFS.

Hey Cort, how are you doing? Been feeling a little under siege recently? :Retro wink: BTW, I don't feel you ever once indicated a person should exercise when they can't, or should push themselves beyond the limitations they may be experiencing at any given time. I feel the quotes you posted very clearly enunciated these principles.

Seems any kind of exercise, like most other things in our lives, requires a delicate balancing act. It also seems there's almost always some kind of silver lining in all things however. Perhaps navigating one continuous balancing act after another requires a new kind of discernment as to what is or is not important. A good thing, yes? :Retro smile:

Best to All, Wayne

 

[Dolphin]

I'm constantly weighing what my own envelope is on any given day, or moment.

Then, to put words into your mouth, it could be said you are using the envelope theory or pacing.

 

[Wayne]

Envelope Theory or Pacing ?

Then, to put words into your mouth, it could be said you are using the envelope theory or pacing.

Hey Tomk,

I'm not sure what the "envelope theory" says. Would there be a succinct definition somewhere that defines this? I'm also not aware of any succinct definition of pacing, as it applies to ME/CFS. I'm not sure if your question is referring to something that is published and has a certain consensus agreement as to what it means.

I guess I would more accurately describe what I do as tuning into, the best I can, to what I can do at any given moment. I feel I could try a walk in the morning, and if I'm not feeling in some kind of harmony or rhythm with that, then I may harm myself. If I try it later on in the same day, and I can tune into a certain harmony with it, then it can be very beneficial.

Let me try an analogy: When baseball batters are in the batter's box, waiting for the next pitch, they all sort of do "their thing", waving and swinging their bats in various ways, contorting their bodies, etc. So what are they doing inwardly while they're doing their outer movements? Essentially, they're trying to find their rhythm. From what I can gather, this is the only way batters have a chance of hitting a baseball at such a high speed.

Physics apparently states that it's physically impossible for a batter's eye to pick up the sight of a typical pitch, evaluate the incoming speed and trajectory, send these impulses to the brain, have the brain calculate all these factors, make a decision as to whether to swing or not, and then do so. Physics says it takes too much time to do this before the pitch hits the catcher's mitt.

So it would seem that a batter finding a rhythm can perhaps transcend the physically impossibility of being able to hit a fast-approaching baseball. I think in a similar manner, when we are dealing with ME/CFS and confront so many physical limitations, tuning into our own personal rhythms and harmonies can help us transcend some of these limitations.

I don't want to sound too esoteric here. I think we all go through life tuning into and expressing many of our internal rhythms. It's just that we with MW/CFS have health issues that compromise much of our ability to do so. Becoming more aware of my own rhythms helps me immensely in being able to, at times, transcend some limitations that ME/CFS tries to impose on me.

Best, Wayne

 

[Dolphin]

I guess I would more accurately describe what I do as tuning into, the best I can, to what I can do at any given moment.

Yes, that would be a good way to describe the core elements of pacing and the envelope theory.

 

[Dolphin]

Brief definition of the envelope theory

The Energy Envelope Theory, which posits that maintaining expended energy levels consistent with available energy levels may reduce the frequency and severity of symptoms

from:

Jason L, Muldowney K, Torres-Harding S. The Energy Envelope Theory and myalgic encephalomyelitis/chronic fatigue syndrome. AAOHN J. 2008 May;56(5):189-95.

 

[Dolphin]

Brief description of pacing

this approach emphasizes pacing activities,
which involves trying to remain as active as possible while
avoiding over-exertion. Low effort activities that are not
associated with symptom flare-ups are selectively
increased while symptom-producing activities are
decreased or managed more effectively. For instance,
activity pacing was applied to completing job or household
tasks in energy-conserving small steps that were less likely
to produce symptom flare-ups.

from:
Jason LA, Torres-Harding S, Friedberg F, Corradi K, Njoku MG, et al. Non-pharmacologic interventions for CFS: A randomized trial. J Clin Psych Med Settings 2007;14:275-96.

I might look for another brief definition if I have time. Again, as Ellen Goudsmit says, with pacing you stop based on your symptoms rather than what the program says.

Actually later in the paper, it explains it a bit more:

It is possible that pacing of
activity, which puts a strong emphasis on becoming aware
of total available energy, managing energy, and not going
beyond one’s energy limits, may lead to the higher
improvements seen in the post-exertional malaise and,
ultimately, to better overall physical functioning.

 

[gracenote]

Hey Tomk,

I'm not sure what the "envelope theory" says. Would there be a succinct definition somewhere that defines this? I'm also not aware of any succinct definition of pacing, as it applies to ME/CFS. I'm not sure if your question is referring to something that is published and has a certain consensus agreement as to what it means.

I guess I would more accurately describe what I do as tuning into, the best I can, to what I can do at any given moment. I feel I could try a walk in the morning, and if I'm not feeling in some kind of harmony or rhythm with that, then I may harm myself. If I try it later on in the same day, and I can tune into a certain harmony with it, then it can be very beneficial.

Let me try an analogy: When baseball batters are in the batter's box, waiting for the next pitch, they all sort of do "their thing", waving and swinging their bats in various ways, contorting their bodies, etc. So what are they doing inwardly while they're doing their outer movements? Essentially, they're trying to find their rhythm. From what I can gather, this is the only way batters have a chance of hitting a baseball at such a high speed.

Physics apparently states that it's physically impossible for a batter's eye to pick up the sight of a typical pitch, evaluate the incoming speed and trajectory, send these impulses to the brain, have the brain calculate all these factors, make a decision as to whether to swing or not, and then do so. Physics says it takes too much time to do this before the pitch hits the catcher's mitt.

So it would seem that a batter finding a rhythm can perhaps transcend the physically impossibility of being able to hit a fast-approaching baseball. I think in a similar manner, when we are dealing with ME/CFS and confront so many physical limitations, tuning into our own personal rhythms and harmonies can help us transcend some of these limitations.

I don't want to sound too esoteric here. I think we all go through life tuning into and expressing many of our internal rhythms. It's just that we with MW/CFS have health issues that compromise much of our ability to do so. Becoming more aware of my own rhythms helps me immensely in being able to, at times, transcend some limitations that ME/CFS tries to impose on me.

Best, Wayne

Wayne,

Thanks for trying to put this into language. It seems to me to be very much like you've explained it. There are so many shifting elements in our bodies as they interact with the outer environment, that I don't think we can ever consciously know what is just the right amount of activity in any given moment. At least I can't. I need the largest amount of flexibility in choosing when and how to engage with something, or that same something can do me in. It is day to day, and moment to moment for me. Also season to season, and year to year. It becomes an art form to live well with this illness, and sometimes to just live with it.

 

[justinreilly]

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

I totally agree. Even the good doctors I've had, one of whom was my internist for years who specialized in ME and alternative medicine, took Wessely's studies seriously. They had no idea he was a con artist studying the idiopathically chronically fatigued. Every appointment with him involved a little lecture on exercise.

Thank you, Cort, for showing us specifically what many great doctors like Dr. Klimas and Dr. Cheney think about on this issue. They are brilliant and independant thinkers. They know far more than I and have seen many thousands of patients. It really is a big question in my mind why they have these viewpoints. It seems like most patients' experience (from surveys and word of mouth) are quite different from some of these doctor's views. That's going to be very hard to resolve, I would think. In the meantime, I strongly believe that CAA should totally represent the experience, viewpoints and knowledge of patients when they are not consistent with those of others (including doctors). This is the mandate of a patient advocacy organization. If CAA does not want to be a patient advocacy org, but instead an org that represents doctors or governments or another stakeholder, that is fine but it should make that clear.

Differing viewpoints of doctors are already well broadcast through other fora- IACFS/ME, journals, medical texts, CDC, etc., i.e. in every forum. The point of having a patient advocacy org is just that.