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

[usedtobeperkytina]

And by the way, I have the brochure for patients that was part of Spark Campaign. I see nothing in there that is alarming. I gave two of those brochures to people last week.

Tina

 

[starryeyes]

Tina wrote: Jennie evidently took my complaint to CAA and they have taken off the composite accounts.

That's great Tina and thank you Jennie.

 

[starryeyes]

Just skimmed it again - THERE's NO GET - sorry, sorry, sorry - there's only CBT and there's mention of pacing. When I read it initially, I remember I thought it was good and also beneficial for patients. I wouldn't have felt that way if it have referred to GET Just a little muddled today, sorry about the reference to GET.

No problem Lily. What I read was the first page of a quiz with no indication of which answeres were correct and CBT was one of the possible answers. Another button on the right side led me to a page explaining CFS and I thought it was well done and from what I could gather, the CAA was explaining our problems with exertion and not promoting CBT.

Did I read that right and is there more there that I could see? I'm hoping that the answers were in line with what we are saying about CBT and GET.

I'd like to know what others here think of these newer CME materials by the CAA.

 

[starryeyes]

And by the way, I have the brochure for patients that was part of Spark Campaign. I see nothing in there that is alarming. I gave two of those brochures to people last week.

Tina

Are you talking about the SPARK materials that are in my Sig? Also, where did you get those brochures?

If so, I suggest clicking on it and clicking CTRL F to bring up the Find Box and type in CBT and hit the down arrow on the right side doing this repeatedly will bring you to all of the times they mentions CBT. Then do the same with GET.

The quotes in my Sig are taken directly from the SPARK documents and there seem to many documents not just the one I quoted. I started a thread here awhile back about another one of their documents. On that one I listed all that I thought was good and then all that was bad:

http://www.forums.aboutmecfs.org/showthread.php?1911-The-CAA-Pamphlet-to-Educate-Doctors

Stuart has listed most or all of the SPARK documents on here further up in this thread. That's how I found out about them.

 

[Lily]

No problem Lily. What I read was the first page of a quiz with no indication of which answeres were correct and CBT was one of the possible answers. Another button on the right side led me to a page explaining CFS and I thought it was well done and from what I could gather, the CAA was explaining our problems with exertion and not promoting CBT.

Did I read that right and is there more there that I could see? I'm hoping that the answers were in line with what we are saying about CBT and GET.

I'd like to know what others here think of these newer CME materials by the CAA.

The first page is a pre-assessment quiz, then the information is presented in 10 sections with a summary quiz/question at the end of each section. There's a nice diagnostic algorithm and a fairly comprehensive section on medications for symptomatic treatment, etc.

 

[starryeyes]

Thanks Lily. Maybe I need to subscribe to MedScape to be able to access the other pages as I could only find two of them and did they ever indicate what the answers are?

 

[Lily]

Thanks Lily. Maybe I need to subscribe to MedScape to be able to access the other pages as I could only find two of them and did they ever indicate what the answers are?

The questions are answered through the education. You just have to register, it's no big deal.

 

[leelaplay]

islandfinn wrote:
"I am going to read your article now."
Uh oh folks. I think I killed her. Bored to death- what a way to go. I'm sure gonna miss those legs

NOT bored Roy, fascinated! So have you received offers for a full book or movie yet? As I said, I can't read these days, so have been working at your article since you posted the link ( http://cfsknowledgecenter.ning.com/...sional?id=2477197:Topic:24250&page=2#comments for those who haven't read it yet) - still only able to get bits. But have bookmarked it and will keep on nibbling at it.

Have you already, or thought of, posting it here so the people on the forum can access it here?

2 things jumped out at me so far:

1. That the CAA's response to your initial airing of this article "outed" who you are without your permission.

2. That Kim McCleary has been the CEO for 18 years.

Is that correct? I've only been on non-profit boards - no CEO involved. There, all positions had limited terms - usually 2 - 5 years, and usually only 1 consecutive re-election or re-appointment allowed . Enough time to master a position and bring a lot to it, but not enough time to become a dictatorship or become entrenched.

 

[starryeyes]

Somewhere in the last few pages someone said they think the CAA will eventually take down their SPARK! materials. Well, I've been asking them to do so for many months now and what they did is they took the link to the SPARK! materials off of their site but left all of them up on the web so anyone and everyone still has full access to them.

 

[starryeyes]

Tina, if the brochures you have from the SPARK! campaign doesn't contain any info about CBT or GET then perhaps the CAA wanted to hide those "treatment ideas" from us. They're certainly rife in the materials used to educate our doctors, nurses and other medical professionals.

 

[Gerwyn]

Tina, if the brochures you have from the SPARK! campaign doesn't contain any info about CBT or GET then perhaps the CAA wanted to hide those "treatment ideas" from us. They're certainly rife in the materials used to educate our doctors, nurses and other medical professionals.

why mention cbt or get at all. There is no scientific evidence that CBT is any better than a cup of tea and a chat.So why mention psychiatrist propaganda?

 

[Dr. Yes]

Hey Gerwyn,

why mention cbt or get at all. There is no scientific evidence that CBT is any better than a cup of tea and a chat.So why mention psychiatrist propaganda?

As I said in an earlier post, it suggests the endorsement by the CAA of a quasi-behavioral paradigm for ME/CFS.

At LEAST, and this is a stretch, it suggests an over-reliance (and over-simplification) on one aspect of the recommendations of a couple CFS or fibro specialists who are using a 'redefined' version of CBT, which should not be called CBT at all, and exercise/activity programs (which hardly qualify as GET to begin with) and are not widely recommended by CFS specialists.

Hi Doc

How about the following;
All chronic debilitating conditions can adversly affect the suffers psychological wellbeing.CBT is therefore as appropiate in ME as it would be in any other chronic debilitating illness
GET is as useful for ME patients as it would be for any other neurological disorder as defined by the WHO. Drs should also be aware of the potential for litigation should a patient suffer adverse effects as a result of recommending this unproven option.

Same information exactly but put in a more advocative manner!

That's giving doctors too much credit for their ability to read between the lines! :Retro wink: I would say "CBT is no more useful in ME than it would be in MS or any other neurological disease", but remember that psych lobby types have started promoting the use of CBT Lite for use in AIDS, certain cancers, and asthma (at least).. the studies I have seen so far on its efficacy in these diseases are primitive or flawed, by the way. But how many doctors go back and look at the studies, or know how to analyze their methodologies and data?

The thing about GET in neurological disease... I know what you mean, but I have a crew of doctors here who wouldn't get what you are saying, and would think that one probably does use GET for certain neurological diseases, ergo...

​

 

[Dolphin]

I agree with Tom above.. it's not just a matter of semantics. And I would add that similarly, there is a world of difference between 'graded' exercise and 'pacing' in the original sense -- the term 'pacing', by the way, is itself slowly being co-opted by some of those who used to push GET but they are changing the definition, as usual, in this case making it more like GET.

The core principle of GET is a gradual but fairly steady increase in activity levels (some are less hard-line about the steadiness than others, but the goal is the same). This simply discounts the reality that the vast majority of ME/CFS patients have an 'activity ceiling' beyond which they cannot continue to increase levels, and that at any time they might experience relapses or other setbacks and cannot return swiftly to the previous activity level. Further, it ignores the physiological risks associated with physical exertion in ME/CFS, which can be more insidious than a mere single-event push-crash phenomenon; rather, it appears that it can also be the result of cumulative, sustained activity over time, even if daily effects are hardly noticeable for some time.

CAA and other literature have indeed over time substituted the term 'activity' for 'exercise', but the concept of graded or gradual increase is almost invariably attached.

Pacing, especially as related to 'Envelope Theory', does not call for gradual increase in activity levels. But, as I mentioned above, some spins on the pacing concept do incorporate the idea of graded increase, making it in effect a kind of "GET Lite".

I strongly advise that the only behavioral therapy recommended at all in CAA literature be standard supportive counseling, as would be recommended to anyone dealing with a severely disabling, life-altering chronic illness or injury. That is, after all, exactly what we have, is it not? As for activity, the focus should be on Envelope Theory, pacing within that context, and an emphasis on the hazards of graded exercise/activity regimens (rather than promotion of them). Then, instead of a postscript about the potential risks of exercise in more severe patients, there could be a postscript about the potential benefits of carefully monitored exercise in less severe patients. A general encouragement to remain as active as is safely possible within one's "energy envelope" at any given time in order to maximize health and avoid deconditioning would of course be appropriate (with the mention of potential risks even here for the most severely ill patients, of course).

That's similar to my thinking too. (Sorry - I'm behind)

 

[Gerwyn]

Hey Gerwyn,

sure I like your phraseology or even better substitute the word counselling being no more useful etc.As for GET are doctors THAT stupid? If so the CAA have certainly failed to educate them and should avoid the terms CBT and GET at all costs!


As I said in an earlier post, it suggests the endorsement by the CAA of a quasi-behavioral paradigm for ME/CFS.

At LEAST, and this is a stretch, it suggests an over-reliance (and over-simplification) on one aspect of the recommendations of a couple CFS or fibro specialists who are using a 'redefined' version of CBT, which should not be called CBT at all, and exercise/activity programs (which hardly qualify as GET to begin with) and are not widely recommended by CFS specialists.



That's giving doctors too much credit for their ability to read between the lines! :Retro wink: I would say "CBT is no more useful in ME than it would be in MS or any other neurological disease", but remember that psych lobby types have started promoting the use of CBT Lite for use in AIDS, certain cancers, and asthma (at least).. the studies I have seen so far on its efficacy in these diseases are primitive or flawed, by the way. But how many doctors go back and look at the studies, or know how to analyze their methodologies and data?

The thing about GET in neurological disease... I know what you mean, but I have a crew of doctors here who wouldn't get that what you are saying, and would think that one probably does use GET for certain neurological diseases, ergo...

​

sure I like your phraseology or even better substitute the word counselling being no more useful etc.As for GET are doctors THAT stupid? If so the CAA have certainly failed to educate them and should avoid the terms CBT and GET at all costs!

 

[silicon]

An Organization of the Patients, For the Patients

Roy, thanks for posting that link. I found your story to be very important and very interesting.

I initially recommended Mary Schweitzer for Board Member of CAA.

I am changing that to: DR MARY SCHWEITZER FOR CEO OF CAA

It really is time for a change. Past time.

Some potentially heretical questions to ask:

Is it realistic to expect a meaningful policy change from the CAA without a regime change?

Isnt 18 years a really long time for anyone to be a CEO, especially when there are so many questions regarding the CAAs performance over this time frame, especially as it relates to advocacy for patient interests?

I wonder how the CAA measures its performance (and the performance of its CEO), and I wonder what a meaningful set of metrics would be?

 

[starryeyes]

Roy, thank you again for all of the advocacy work you've done for us. I agree with your sentiments about the CAA and I think it's high time we have new leadership.

 

[Dolphin]

If we could just use different terminology.

Replace CBT with "professional counseling to learn to cope with having chronic illness."

Replace GET with "pacing, meaning the patient alternates complete rest periods and some body or mental activity during the day based on the level of illness the patient is experiencing. If the patient is largely bed bound, then stretching in bed for as little as five minutes would be a suggested starting point. The recommendation is to rest for three times the amount of time of activity after the activity. In this case, it would be 15 minutes. Because of the sensitive CNS in CFS patients, the rest periods, to be most effective, should be supine with no sensory input. Cycling the alternating periods of rest and mental and physical activity during the day has been shown in many CFS patients, not all, to produce improvement in their condition over time.

"Most CFS patients end up exacerbating their symptoms by doing too much activity in times that their symptoms are less, which leads to a return of debilitating symptoms within 48 hours. This can sometimes lead to a "push and crash" cycle which is damaging to the long-term prospect of recovery. Care should be given, then, that the patient stops activity before they feel fatigue from the activity.

"If the patient is at a higher functioning level, she can start with short periods of walking or swimming, always resting afterward, following the protocol of pacing activity. Until a patient has recovered, aerobic or weight lifting exercise is not recommended and may even cause a relapse after the patient has recovered."

Notice, I have replaced exercise with "body activity" for the severely ill.

Much of the problems here are the semantics.

Tina

Sorry Tina for just picking out a small part of what you said to say that CBT isn't counselling. Generally I don't disagree much with what you are saying and we could probably come to enough common ground to put an advice sheet together or whatever.

 

[Dr. Yes]

That is what I am saying, ditch the confusing and loaded terms of GET and CBT completely.

Instead, say "professional counseling may be helpful to guide the patient in making adjustments and accepting the limitations of having a chronic and debilitating illness." I don't want to see CBT, even with caveat explanation of it anywhere in an authoritative CFS literature. Bad, bad word. Just leave it out. "professional counseling" is sufficient. And spelled out, it is fewer letters than cognitive behavioral therapy.

Sorry if I misunderstood your point on this earlier, Tina. I may now be misunderstanding other points you made, but:

And, if you start off as I did, with stretching in bed. In time, you might be able to do more, as you recover. Most of us do see improvement, if not recovery.

Can you cite any valid scientific evidence to back up that last statement in particular? I don't believe it is accurate at all, unfortunately... many PWC do see improvement at various times for various reasons, but not due to any graded activity program. A few have reported improvement in such programs, but nowhere near "most", and the scientific validity of many of these trials is questionable.

So you wouldn't say the person who can now garden for thirty minutes a day (rest period following, of course) should still be only stretching in bed.

Obviously not, and I don't think anyone has proposed this..?

So I have no problem with gradual increase of body activity, as the physical condition allows, being careful to not exacerbate the symptoms by doing too much. For some, that may mean they don't increase.

As you have read elsewhere on this thread, a very high percentage of PWC have at one time or another experienced worsening with GET, and existing scientific evidence suggests a risk involved in any graded activity for many patients. That means we should all have a problem with this approach being promoted, in the same way as we would have a problem with a drug that has an unacceptably high level of morbidity being sold (even if it happened to help you or me).

I understand the qualification you added, but even that level of subtlety is lost on most doctors and physical therapists.

But I don't think there is a threshold where if you have CFS you will never be able to do this or that. Last summer, I was feeling so well for so many months, I actually thought I might be able to one day go hiking or canoeing again...I did improve to the point I could do a lot of activity I formerly could not do. And it was not causing crashes for many months.

That is a personal anecdote, and I am glad that you had that experience, Tina. But your first statement there is not accurate, or at least is unclear. If you mean you do not think there is an 'activity ceiling' for PWC at any given time, you are definitely mistaken. This is not only almost universally self-reported, but has been copiously documented in research studies.

If you meant that there are no clear permanent limits to improvement in ME/CFS, then obviously you are correct, as many people have at various times regained some or a great deal of their previous health, and a fortunate few appear to have entirely recovered. One can always hope... However, I don't see why this is important to mention in this discussion; I don't think anyone here is suggesting statements against this idea.

I guess I am saying it needs to be addressed because of the misinformation, doctor ignorance and patient tendency to do too much. But we are all at different levels. And most of us will see improvement, meaning we can and should do more as long as we don't do too much and make ourselves sicker.

Again, the statement I put in bold is not accurate; I don't know what you mean by "most of us will see an improvement" in any context, and the rest of the sentence is loaded -- and at best too subtle for many practitioners (see all previous arguments on GET, graded activity, and doctor misunderstandings).

 

[starryeyes]

I wish your statements were true for me Tina, I really do, but they're not. I think you've been incredibly lucky as was I when my CFS became mild for 14 years.

 

[Dolphin]

Or that the defintions of CBT and GET in the abstract, and application of those methods in real life by doctors who truly understand CFS, and application of those methods in real life by doctors who do NOT truly understand CFS, and mention of these methods in the media, and what people hear when those terms are used - that none of these are in alignment. There is a world of difference between "CBT and GET are all you need" and "There is no treatment for CFS; the best that can be done to ameliorate the illness in some people is CBT and GET." And of course, even if the terms are replaced or better defined, there is NO treatment that helps ALL people with CFS, or even the same person with CFS at different points in time.

I don't know if that is semantics or not, but this is what I understand Tina to be saying.

I don't mean to be picky but I just want to use your post to make a post I want to make.

I'm not sure if most doctors truly understand the illness even if they are sympathetic. The people who understand the management aspects of the illness best I find are people who have the illness (which can include some doctors and other professionals) and then people who live with. Nearly everyone else seems to say problematic things at least the odd time.

I don't think everyone should be encouraged to do exercise programs. Professionals could say that if patients want to do an exercise program, this is how they could do it but that's different from recommending them for everyone.

3 Dutch studies and Fred Friedberg have now found that when people have been encouraged to go for walks, they don’t do extra steps across the day.
This means that if they are going for walks, they are cutting out other activities.

A lot of people really aren’t in a position to be cutting out activities. They might have pressure to do some sort of paid work.
Or they might have children to mind – going for a walk may mean they have less time to mind their children.
Or going for a walk might mean they have less time to put into their relationship with their partner. Or energy they might spend socialising (which might lead to finding a partner).
Or they might have other responsibilities like relatives or minding their house, cooking, shopping, etc.

So I don’t think there should be too much pressure on people to do “meaningless” walks or other activity. They should try to do a reasonable amount of activity (and could keep track of this using a pedometer) but that shouldn’t mean they should be expected to use up a good percentage of their energy going for walks or other exercise.

If they want to want to exercise, as I say, they could exercise but I don’t think it should be part of a management program that everyone should be expected to do.