jackie
Senior Member
- Messages
- 591
same post twice! thats never happened before...my computer is as tired and wonky as i am!
-
Welcome to Phoenix Rising!
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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
To become a member, simply click the Register button at the top right.
Time for the Big Talk. How's the CAA doing?
- Thread starter hvs
- Start date
Wayne
Senior Member
- Messages
- 4,308
- Location
- Ashland, Oregon
Hi Koan, Hi All,
Koan, thank you for your kind reply. I've not been participating on this forum much because most of my energy has been diverted elsewhere these past few months. I wore myself down in the process, and will need more time to better recuperate. That means of course I don't have the energy to go back and do the homework you suggest, and would be appropriate were I too consider staying on this thread.
I did read Cloud's post this morning, which I feel gave me a much better insight into some of the core issues being discussed. Thanks for posting Cloud. Even if it may have been redundant for you and others, it gave me some very good insights. Sometimes one person's writing style can convey things very succinctly for individual readers.
I'm going to be backing away from this thread at this time. I just don't have the history that many of you have. I also don't have the cognitive energy to keep up with it all. But I do appreciate what so many of you are advocating for. We all have to consider out energy expenditures carefully, and it's clear that many of you feel this is all very important.
I read the posts by jspotila this morning. I don't know how some of you feel about her posts, but I got a clear impression that the CAA is very interested in what everybody on this thread has been saying. It also appears they want to work with everybody here who wants to make this the CME publication much better.
I'm hoping this will lead to some constructive cooperation, as I have now gotten a better insight into the importance of this topic as well.
Best to All, Wayne
That's great.
Technically, that's the article on the envelope theory but the envelope theory and pacing are very similar.
I linked to a good (IMO) pacing article in this post http://www.forums.aboutmecfs.org/sh...-s-the-CAA-doing&p=72520&viewfull=1#post72520 i.e. http://www.cfids.org/youth/articles/medical/cc69840.asp
BTW, personally, I thought there was some good stuff in the (controversial) Alex Howard article on pacing in the CFIDSlink.
Additional follow-up
Regarding the Medscape CME course:
Gerwyn expressed concern that the Outcomes study shows that 85% of participants planned to "initiate aggressive symptom management to maintain functionality in a patient with CFS" and equated aggressive symptom management to GET and CBT.
This is not the case. The "aggressive symptom management" as used in the Outcomes study referred to addressing pain, sleep problems, cognitive problems, allergies, etc. and NOT use of CBT or GET. The Outcomes study, then, showed that 85% of participants completing the CME would begin to treat pain, sleep problems and other symptoms of CFS.
Another issue that has been extensively discussed here is whether the Medscape CME would change the attitudes of healthcare providers on use of exercise and its effect on CFS patients. Some posts have insisted that yes, the course would improve attitudes and some insisted that it would not. The Outcomes study showed that before taking the course, 14.5% of the participants would have recommended a vigorous exercise program. After taking the course, only 2.4% would have, compared to 19.4% who did not take the course. (sorry for the bold, but I think this data is important)
I said earlier today that I would seek additional information about any plans for using or revising the Medscape course. The Association has no plans to use the Medscape course, and is focusing on establishing new outlets such as the article that just appeared in American Academy of Pain Management. Someone (sorry, not sure who or on what thread) criticized that article for not mentioning neuroendocrine abnormalities in CFS patients. However, I must point out that the article includes a side bar from Dr. Komaroff on the Top 10 discoveries about the biology of CFS, stating: CFS patients have abnormalities in multiple neuroendocrine systems in the brain, particularly depression of the HPA axis, but also in the hypothalamic-prolactin axis and hypothalamic-growth hormone axis." The journal wanted to delete that sidebar, and the Association insisted that it be included.
Finally, there has been extensive criticism in this thread of the CFS Toolkit for Doctors that was available through the Spark site. The Toolkit was removed last week (I think - I'm losing track of days), and many other changes were made to the site as well.
Regarding the Medscape CME course:
Gerwyn expressed concern that the Outcomes study shows that 85% of participants planned to "initiate aggressive symptom management to maintain functionality in a patient with CFS" and equated aggressive symptom management to GET and CBT.
This is not the case. The "aggressive symptom management" as used in the Outcomes study referred to addressing pain, sleep problems, cognitive problems, allergies, etc. and NOT use of CBT or GET. The Outcomes study, then, showed that 85% of participants completing the CME would begin to treat pain, sleep problems and other symptoms of CFS.
Another issue that has been extensively discussed here is whether the Medscape CME would change the attitudes of healthcare providers on use of exercise and its effect on CFS patients. Some posts have insisted that yes, the course would improve attitudes and some insisted that it would not. The Outcomes study showed that before taking the course, 14.5% of the participants would have recommended a vigorous exercise program. After taking the course, only 2.4% would have, compared to 19.4% who did not take the course. (sorry for the bold, but I think this data is important)
I said earlier today that I would seek additional information about any plans for using or revising the Medscape course. The Association has no plans to use the Medscape course, and is focusing on establishing new outlets such as the article that just appeared in American Academy of Pain Management. Someone (sorry, not sure who or on what thread) criticized that article for not mentioning neuroendocrine abnormalities in CFS patients. However, I must point out that the article includes a side bar from Dr. Komaroff on the Top 10 discoveries about the biology of CFS, stating: CFS patients have abnormalities in multiple neuroendocrine systems in the brain, particularly depression of the HPA axis, but also in the hypothalamic-prolactin axis and hypothalamic-growth hormone axis." The journal wanted to delete that sidebar, and the Association insisted that it be included.
Finally, there has been extensive criticism in this thread of the CFS Toolkit for Doctors that was available through the Spark site. The Toolkit was removed last week (I think - I'm losing track of days), and many other changes were made to the site as well.
G
Gerwyn
Guest
that was not stated in the study where does that information come from?
, helping patients maintain function through aggressive symptom management and utilizing appropriate non-pharmacologic interventions
how are they going to manage the fatigue pain sleep they are not going to use excercise at all?
What are the non pharmacological interventions are they not going to use CBT at all?
The cme credits involved physicians nurses pharmacists and other clinical staff.Do we have a breakdown of how many participants were legally able to provide pharmaceutical interventions.how were the others treat pain sleep and so on.Were 85% of participants doctors.
After the study participants were 46% more likely to make evidence based decisions compared to a representative group.What does that actually mean.46% more likely than drs who did not follow evidence based practice is not much of a result.
The survey did not actually report that 85% of participants would manage symptoms agressively but that participants were 46% more likely to do so than a "representative group".We have no idea what the level of "evidence based practice " in the compariison group was.The 85% was an entirely seperate matter it was the number of people who said the course would probably change their practice.How beneficial a change in practice of nurses pharmacists and administrative staff would actually be, if carried through,is itself open to question
I,m afraid it still looks like CBT and GET GET is not vigerous excercise and the total silence about CBT speaks volumes
, helping patients maintain function through aggressive symptom management and utilizing appropriate non-pharmacologic interventions
how are they going to manage the fatigue pain sleep they are not going to use excercise at all?
What are the non pharmacological interventions are they not going to use CBT at all?
The cme credits involved physicians nurses pharmacists and other clinical staff.Do we have a breakdown of how many participants were legally able to provide pharmaceutical interventions.how were the others treat pain sleep and so on.Were 85% of participants doctors.
After the study participants were 46% more likely to make evidence based decisions compared to a representative group.What does that actually mean.46% more likely than drs who did not follow evidence based practice is not much of a result.
The survey did not actually report that 85% of participants would manage symptoms agressively but that participants were 46% more likely to do so than a "representative group".We have no idea what the level of "evidence based practice " in the compariison group was.The 85% was an entirely seperate matter it was the number of people who said the course would probably change their practice.How beneficial a change in practice of nurses pharmacists and administrative staff would actually be, if carried through,is itself open to question
I,m afraid it still looks like CBT and GET GET is not vigerous excercise and the total silence about CBT speaks volumes
Hi Jennie,
Thank you for letting us know that the Spark Toolkit is no more. And, thank you, as an agent of the CAA, for being responsive to the community.
I want also to say that you were quite right re how the study came up in this conversation. I owe you an apology. I was letting my frustration get the better of me. Sorry!
I'm afraid I'm not very impressed with the following as it would be easy to misinterpret.
emphasis mine
It could quite easily be that the doctors who would not recommend a "vigorous exercise program" would feel quite justified in recommending a less than vigorous exercise program as a first line strategy across the board. They may have learned that "vigorous" exercise was not the way to go because they have been taught that graded exercise was.
Thanks for your time and your interest.
Koan
Thank you for letting us know that the Spark Toolkit is no more. And, thank you, as an agent of the CAA, for being responsive to the community.
I want also to say that you were quite right re how the study came up in this conversation. I owe you an apology. I was letting my frustration get the better of me. Sorry!
I'm afraid I'm not very impressed with the following as it would be easy to misinterpret.
emphasis mine
jspotila said:
It could quite easily be that the doctors who would not recommend a "vigorous exercise program" would feel quite justified in recommending a less than vigorous exercise program as a first line strategy across the board. They may have learned that "vigorous" exercise was not the way to go because they have been taught that graded exercise was.
Thanks for your time and your interest.
Koan
Wayne
Senior Member
- Messages
- 4,308
- Location
- Ashland, Oregon
Hi Jennie,
Thanks for all your kind, thoughtful, and helpful comments. I'm sure it took a lot of energy to write out all your posts here today. Much appreciated! :Retro smile:
G
Gerwyn
Guest
The other thing that struck me is the word" would have recommended vigerous excercise but if they treated 3 patients a week should that not have said did recommend
And no mention of CBT prior or after the course at all!.
jackie
Senior Member
- Messages
- 591
Thank you Jennie for your responses (and the time and effort!)...and the link to the pain management article (I've just started to read). I'm especially glad to hear of the tool-kit removal! jackie
I may be repeating myself a little but if a new course is to be made, the question needs to be addressed as to who will write it. The same applies to other courses (e.g. the IACFS/ME are drawing up guidelines and the CDC were supposed to).
We have seen most (it seems) US doctors have a version of exercise therapy they are likely to recommend.
It has been suggested Lucinda Bateman’s views could have changed – it would be interesting to find out.
She has previously been very into exercise programs e.g. recommending doctors bring them up at every appointment
http://www.forums.aboutmecfs.org/sh...perate-illnesses&p=72415&viewfull=1#post72415
She is also very worried about deconditioning (same link), overly worried in my opinion. So it would seem to be a big change for her to not recommend exercise.
So the key for me would be who writes any management program. As I’ve said before, if you get a group of doctors who recommend exercise programs to their patients, it seems very likely they’re going to recommend exercise programs in an education course.
The CME/Medscape course does have a worldwide reach:
Jackie, I agree with you that sometimes nothing is better than something. Although as I've said, I think if you get a group with lots of patients and professionals who are patients and some professionals who live with patients, a program can be written based on pacing/envelope theory. It wouldn't have to be a big group of course.
Yes.
I'm not sure I've seen much about what the study shows. But here's a quote http://www.cfids.org/cfidslink/2009/010704.asp :
The participants are told:
So to help pain for example, they might recommend a strengthening and conditioning program.
This is despite the fact that I'm not sure I can recall pain been measured in any of the exercise trials for CFS; however, US doctors may think pain was helped as psychologists/psychiatrists often use slightly misleading terms e.g. fatigue symptoms - people might interpret that in a CFS trial as all the symptoms when in fact all they used was a fatigue scale. The FINE Trial today is another example - the only symptoms that were measured were fatigue and sleep (and depression and anxiety). On the once-off exercise studies, exercise tends to reduce pain for the healthy people but increase pain for the people with CFS.
C
Cloud
Guest
Jennie, I'm impressed with your ability to handle all this so well (I probably would have gone bizerk and cussed everyone out long ago). Whatever the differences of opinion, you certainly have my admiration and gratitude for your grace and maturity in striving for solutions in such a challenging environment. Thank you for all that you do.
akrasia
Senior Member
- Messages
- 215
Making representations
The CAA has never been able to grasp that the social conditions most of us endure involve a very high degree of alienation and marginality. Instead, despite its protests to the contrary it has consistently served up steaming portions, in the memorable phrase of a cfs activist,of happy clappy feel good yaya, delivering false hope when what was needed was compassionate grounding in the truth. My first cfs doctor, on my initial visit, gently but firmly told me that I was not going to get better for the foreseeable future and that I should apply for social security. I was sad,of course, but this was the first time a circuit of true understanding had been closed by someone trustworthy, since I had gotten sick. It was a huge relief.
By contrast, the CAA has seldom played that role for me, of validating important, genuine perceptions, and resolutely opposing all that would denigrate or hurt this extremely vulnerable community. It allowed the devil through the door, when it made the decision to give the psychological crudity of Peter White et al a place at the table. Conceding anything to the Stephen Strauss's or the Bill Reeves has been catastrophic. Instead of a robust opposition, they were useful idiots, providing the cover these cunning and arrogant men and institutions needed for their ongoing campaigns of denigration and lip service.
Which gets me to the current focus of the debate. How could a term like kinesophobia make it into a document purporting to represent the needs of patients, if the CAA itself hadn't desired to speak in the language of the "big boys", the voice of authority. This was not meant to be seen by patients but to be applied to patients. They assumed passivity on our part, and since any phobia Is cognate with delusion, self deception.
Authority and "expert" knowledge is a vexed subject with people with this illness.
That has been the game: who has cognitive authority and whose cognitive authority counts the most. I've just marked the kickoff to my 23rd year with m.e. And while I appreciate the efforts of our doctors on our behalf I also believe that they are not doing us any favors. They are acting decently, courageously, ethically. That should be celebrated but does not require obsequious submission or fawning gratitude. We DESERVE the best medical care.
Appealing to authority to justify giving exercise advice, which engenders no benefits but endangers what fragile limb we happen to be perched on, is unacceptable. In addition to being dangerous, it recapitulates the ur trauma haunting m.e., the relentless skepticism and disbelief many of us endure everyday and the ideology of false illness beliefs and exercise avoidance that is its close companion. When so little is known about energy metabolism and its catastrophic dysfunction in us, the appeal to authority is ludicrous. It's both prudent and wise to keep a close eye on any organization whose blind spot is its relation to its own craving for authority and dominance, whose displays of leadership have been extremely unconvincing, and whose will to power, by accommodating the worst forces at play in m.e./cfs history, has stranded us in limbo. Eat your Wheaties and support the WPI.
The CAA has never been able to grasp that the social conditions most of us endure involve a very high degree of alienation and marginality. Instead, despite its protests to the contrary it has consistently served up steaming portions, in the memorable phrase of a cfs activist,of happy clappy feel good yaya, delivering false hope when what was needed was compassionate grounding in the truth. My first cfs doctor, on my initial visit, gently but firmly told me that I was not going to get better for the foreseeable future and that I should apply for social security. I was sad,of course, but this was the first time a circuit of true understanding had been closed by someone trustworthy, since I had gotten sick. It was a huge relief.
By contrast, the CAA has seldom played that role for me, of validating important, genuine perceptions, and resolutely opposing all that would denigrate or hurt this extremely vulnerable community. It allowed the devil through the door, when it made the decision to give the psychological crudity of Peter White et al a place at the table. Conceding anything to the Stephen Strauss's or the Bill Reeves has been catastrophic. Instead of a robust opposition, they were useful idiots, providing the cover these cunning and arrogant men and institutions needed for their ongoing campaigns of denigration and lip service.
Which gets me to the current focus of the debate. How could a term like kinesophobia make it into a document purporting to represent the needs of patients, if the CAA itself hadn't desired to speak in the language of the "big boys", the voice of authority. This was not meant to be seen by patients but to be applied to patients. They assumed passivity on our part, and since any phobia Is cognate with delusion, self deception.
Authority and "expert" knowledge is a vexed subject with people with this illness.
That has been the game: who has cognitive authority and whose cognitive authority counts the most. I've just marked the kickoff to my 23rd year with m.e. And while I appreciate the efforts of our doctors on our behalf I also believe that they are not doing us any favors. They are acting decently, courageously, ethically. That should be celebrated but does not require obsequious submission or fawning gratitude. We DESERVE the best medical care.
Appealing to authority to justify giving exercise advice, which engenders no benefits but endangers what fragile limb we happen to be perched on, is unacceptable. In addition to being dangerous, it recapitulates the ur trauma haunting m.e., the relentless skepticism and disbelief many of us endure everyday and the ideology of false illness beliefs and exercise avoidance that is its close companion. When so little is known about energy metabolism and its catastrophic dysfunction in us, the appeal to authority is ludicrous. It's both prudent and wise to keep a close eye on any organization whose blind spot is its relation to its own craving for authority and dominance, whose displays of leadership have been extremely unconvincing, and whose will to power, by accommodating the worst forces at play in m.e./cfs history, has stranded us in limbo. Eat your Wheaties and support the WPI.
It's effective in harming, killing, or making bedridden the ME patients who try it. That's what it's effective in.
jackie
Senior Member
- Messages
- 591
Akrasia...Boy! What a breath-taking piece of writing! And I'd be willing to get booted from Here to KingdomCome in order to praise it!....j
Lily
*Believe*
- Messages
- 677
akrasia, I thought it was rather appropriate that what you wrote was initially accidentially presented in duplicate, and I rather hoped you wouldn't correct it. Once simply was not enough. Well done!
rebecca1995
Apple, anyone?
- Messages
- 380
- Location
- Northeastern US
A Question of Ideology
Thank you, Jennie, for letting us know the Toolkit has been removed--and thank you, CAA, for removing it!
As a severe patient, I want to address a section of the CME that Orla brought up (thank you, Orla):
The CME is talking about me. I don’t consider myself bedridden because I can walk to the bathroom (and sometimes to another room). I don’t have to use the bedside commode anymore unless something extra is happening that uses up my energy, like a rare trip to the doctor or someone visiting. Still, I'm very severe.
Let’s look at the CME advice as it applies to a basic daily activity: hair washing.
I can’t wash my hair. I don’t have enough energy for the several minutes of sustained arm movement required to shampoo my hair, rinse it, condition it, rinse it again, wrap it in a towel, and comb it. It’s especially difficult for me to sustain arm movement in an upright position, like when seated on a shower chair. (This is the main reason why I can't shower at all and must settle for wiping off with a washcloth in bed.)
I can, however, brush my hair. I sit on the edge of my bed and brush it 5-7 strokes. At that point I get post-exertional fatigue in my muscles and can’t hold up my arms anymore, so I put the brush down and rest. It’s not that I’m afraid to move my arms (kinesophobia); it’s that I’m physically unable to until they recover with rest. Sure, I could push myself to brush my hair 15-20 strokes, but that would lead to sacrificing another physical activity, such as lifting a book down from a shelf. I can’t do both.
Now, the purveyors of CME advice might say something like, “We want to get you more functional! In addition to brushing your hair, use your arms to do 10 repetitions with a resistance band. The next week do 12. After gradually increasing repetitions, you should be able to wash your hair in a month or two.”
Wrong. After I forced myself through the first round of exercises, my arms would be so weak and rubbery that I wouldn’t be able to lift them to brush my own hair for the next few days. I would have to ask someone else to do it, which I hate. It’s horribly demeaning and infantilizing to depend on others for care of your own body. Why would I want to give up the small amount of self care it took months and years to regain?
In other words, adopting the philosophy outlined in the CME would result in LOSING activities of daily living--a fact that directly contradicts the CME’s claim: “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.”
Like so much of the CME, and CAA literature in general, this sentence conveys a false idea: that exercise leads to higher activity.
What scientific evidence is there that exercise improves function in severely ill patients? We don’t need exercise, we need energy.
Going through the CME line by line, tweaking exercise references is useful, yes. We patients can edit sentences, take out paragraphs, replace one word with another. But a better solution is for the CAA to fundamentally shift its position on exercise away from mainstream notions, toward the actual experiences of the patient base.
A change in the CAA’s core ideology will take care of the details in its brochures.
Thank you, Jennie, for letting us know the Toolkit has been removed--and thank you, CAA, for removing it!
As a severe patient, I want to address a section of the CME that Orla brought up (thank you, Orla):
The CME is talking about me. I don’t consider myself bedridden because I can walk to the bathroom (and sometimes to another room). I don’t have to use the bedside commode anymore unless something extra is happening that uses up my energy, like a rare trip to the doctor or someone visiting. Still, I'm very severe.
Let’s look at the CME advice as it applies to a basic daily activity: hair washing.
I can’t wash my hair. I don’t have enough energy for the several minutes of sustained arm movement required to shampoo my hair, rinse it, condition it, rinse it again, wrap it in a towel, and comb it. It’s especially difficult for me to sustain arm movement in an upright position, like when seated on a shower chair. (This is the main reason why I can't shower at all and must settle for wiping off with a washcloth in bed.)
I can, however, brush my hair. I sit on the edge of my bed and brush it 5-7 strokes. At that point I get post-exertional fatigue in my muscles and can’t hold up my arms anymore, so I put the brush down and rest. It’s not that I’m afraid to move my arms (kinesophobia); it’s that I’m physically unable to until they recover with rest. Sure, I could push myself to brush my hair 15-20 strokes, but that would lead to sacrificing another physical activity, such as lifting a book down from a shelf. I can’t do both.
Now, the purveyors of CME advice might say something like, “We want to get you more functional! In addition to brushing your hair, use your arms to do 10 repetitions with a resistance band. The next week do 12. After gradually increasing repetitions, you should be able to wash your hair in a month or two.”
Wrong. After I forced myself through the first round of exercises, my arms would be so weak and rubbery that I wouldn’t be able to lift them to brush my own hair for the next few days. I would have to ask someone else to do it, which I hate. It’s horribly demeaning and infantilizing to depend on others for care of your own body. Why would I want to give up the small amount of self care it took months and years to regain?
In other words, adopting the philosophy outlined in the CME would result in LOSING activities of daily living--a fact that directly contradicts the CME’s claim: “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.”
Like so much of the CME, and CAA literature in general, this sentence conveys a false idea: that exercise leads to higher activity.
What scientific evidence is there that exercise improves function in severely ill patients? We don’t need exercise, we need energy.
Going through the CME line by line, tweaking exercise references is useful, yes. We patients can edit sentences, take out paragraphs, replace one word with another. But a better solution is for the CAA to fundamentally shift its position on exercise away from mainstream notions, toward the actual experiences of the patient base.
A change in the CAA’s core ideology will take care of the details in its brochures.