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

gracenote

All shall be well . . .
Messages
1,537
Location
Santa Rosa, CA
Loving this quote button.

congratulations.jpg


Thank you Cort. We all thank you.
 
K

_Kim_

Guest
Loving this quote button

Thank you Cort!! Now that you've got the single quote function down, why not try the multi-quote function? Click the [double quote +] button for all the posts you want to quote, then click [+Reply to Thread]. Everyone's quote will be in your text box and you can insert comments after each of them.
 

Dolphin

Senior Member
Messages
17,567
Thank you Cort!! Now that you've got the single quote function down, why not try the multi-quote function? Click the [double quote +] button for all the posts you want to quote, then click [+Reply to Thread]. Everyone's quote will be in your text box and you can insert comments after each of them.
Thanks _Kim_ . I never knew how that worked.
 

Dolphin

Senior Member
Messages
17,567
tomk said:
Fred Friedberg is now recommending graded activity for the quarter of patients who are least active. For other groups, he is more nuanced. (Not sure how relevant that is to the CAA but my overall point is that I don't think the professionals necessarily get the issue)

Yes Fred told me in an interview that about 3/4's of patients are doing too much and that about 1/4 are doing too little. Staci Stevens believes about the same thing. I guess that means that few patients are doing just about right :)
Yes, it is an interesting point that we are constantly told we are not doing things right.

But just to clarify what Fred Friedberg is saying. He is recommending graded activity for *all* the patients (1/4) who are least active. The fact is that many of these too might be doing too much. My glands swell up later if I walk relatively short distances. My ceiling is a lot lower than other people's (it wasn't always this way - I was mildly affected for the first few years). What the severely affected need more than most is support - but what Fred Friedberg is saying is jeopardising people getting this.

The envelope theory is different as this adjusts to what the individual person feels and how their body reacts so can apply equally to people of different severities. Pacing is similar.
 

Dolphin

Senior Member
Messages
17,567
Loving this quote button. That first sentence is generally followed I think. Its the second that is not well understood. A part of CBT and other therapies - at least as Ive seen them described - is to avoid the push-crash cycle; pushing too hard and then crashing. The fact that if you push too hard you crash - that can only imply a physiological problem can it not?

I think that researchers are slowly getting this on both sides of the aisle. I think it was Bleijenberg, a big CBT guy, who a year or so ago penned a paper stating that he thought that post exertional malaise should be a hallmark symptom for this disease (aka the Canadian Criteria) and he based that idea, ironically, partly on the CDC's HPA axis studies. Then he went through a scenario of pro-inflammatory cytokine activation parts of which could have come from Dr. Peterson or Dr. Maes.
You might be right that that comment is from Bleijenberg (or was it from a Belgian researcher like Van Houdenhove who has changed a little) but I have seen little evidence that generally CFS experts who have pushed GET and CBT based on GET have changed much on this side of the Atlantic. They're still promoting the same basic non-drug treatments, etc. I've read a few recent papers from Bleijenberg.
 

usedtobeperkytina

Senior Member
Messages
1,479
Location
Clay, Alabama
Cort, what you are describing as CBT, helping patients avoid the push / crash cycle, I was told on one of these threads is not CBT, but counseling. I was told CBT is trying to change people's beliefs.

Tina
 

Hope123

Senior Member
Messages
1,266
I think some think "physical activity" and "exercise" is the same thing. The problem is exercise normally brings to mind weight lifting, running or aerobics.

But, I think Klimas and other CFS doctors are talking about body movement, stretching or other things like that.


The best version of this I've heard is that "physical activity" encompasses everything physical you do - from walking to get the mail to standing up to make a meal to walking for an errand to walking for just exercise to stretching. Doing chores around the house is a physical activity. I think I heard this from Campbell and from some of the CFS docs (forget where). For many folks, regular activities of life such as these are enough or already too much for them. Dr. Lerner in MI doesn't have people doing ANY exercise until they are able to handle their household affairs and work a 40-hour week without relapse or symptoms.
 

usedtobeperkytina

Senior Member
Messages
1,479
Location
Clay, Alabama
I heardi

I heard Klimas, I think she gets the body activity thing right.

Stretching or some activity for five minutes the first day and then complete rest for a period of time (was it double the time of activity?), then trying two cycles the next day, depending on how you feel, etc.

As we all know, though, for most of us, the problem is not that we don't do enough, it is that we do too much or we don't stagger what we do, that is pace. But at first we need to think in very small increments, five minutes.

Tina
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
I didn't even know that it existed. Yes Fred told me in an interview that about 3/4's of patients are doing too much and that about 1/4 are doing too little. Staci Stevens believes about the same thing...

Fred Friedberg is now recommending graded activity for the quarter of patients who are least active. For other groups, he is more nuanced. (Not sure how relevant that is to the CAA but my overall point is that I don't think the professionals necessarily get the issue)

Cort and Tomk, I must agree. Anyone who thinks 1/4 of pwME are doing too little and should do GET is not looking at the facts. This is very disturbing to me considering these people are considered knowledgeable.
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
The best version of this I've heard is that "physical activity" encompasses everything physical you do - from walking to get the mail to standing up to make a meal to walking for an errand to walking for just exercise to stretching. Doing chores around the house is a physical activity. I think I heard this from Campbell and from some of the CFS docs (forget where). For many folks, regular activities of life such as these are enough or already too much for them. Dr. Lerner in MI doesn't have people doing ANY exercise until they are able to handle their household affairs and work a 40-hour week without relapse or symptoms.

This is so important. As someone else said on PR, I makes absolutely no sense to tell someone who is struggling to take care of themselves to do additional meaningless activity. This is either impossible or is excruciating and will make them crash. It's also insulting and alienating.

Pacing/staying in the envelope is the key in this area. I agree totally with Dr. Lerner- no extra activity until you can work without relapse.
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
UK Psychs now Admit PEM Central, but tell Patients the Opposite and Demand Exercise

A part of CBT and other therapies - at least as Ive seen them described - is to avoid the push-crash cycle; pushing too hard and then crashing. The fact that if you push too hard you crash - that can only imply a physiological problem can it not?

I think that researchers are slowly getting this on both sides of the aisle. I think it was Bleijenberg, a big CBT guy, who a year or so ago penned a paper stating that he thought that post exertional malaise should be a hallmark symptom for this disease (aka the Canadian Criteria) and he based that idea, ironically, partly on the CDC's HPA axis studies. Then he went through a scenario of pro-inflammatory cytokine activation parts of which could have come from Dr. Peterson or Dr. Maes.

What is totally weird to me is that these hard liners are agreeing and emphasizing PEM. Peter White says that PEM is a cardinal feature. The NICE definition is the Oxford definition (merely idiopathic chronic fatigue) plus PEM. The UK psych CBT emphasises pacing to prevent exertion and crashing.

Yet they still push their harmful GET and CBT that says exercise has been proven to only help you and never harm you and that you have 'erroneous beliefs' that have to be corrected.

They're taking their "let's see how much damage we can do to the patients and still get away with it" core approach and pushing it to the maximum extreme. They're actually admitting PEM is perhaps the central feature of ME and then pushing a 'therapy' CBT that says the exact opposite in a demeaning way to patients and forcing patients to exercise. It's sickening and bizarre.
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
"Movement" and "Stretching" NOT "Graded Exercise"

I heard Klimas, I think she gets the body activity thing right.

Stretching or some activity for five minutes the first day and then complete rest for a period of time (was it double the time of activity?), then trying two cycles the next day, depending on how you feel, etc.

As we all know, though, for most of us, the problem is not that we don't do enough, it is that we do too much or we don't stagger what we do, that is pace. But at first we need to think in very small increments, five minutes.

Tina

For me, heating the muscles and then stretching twice a day has been the most effective therapy I have tried. I think everyone should try this. But, when recommended it should be recommended as "stretching" not "Graded Exercise" with the footnote that if all you can do is stretch, then stretch.

For the bedbound, they should be advised under "Movement for the Bedbound" to "move their limbs a bit each day and roll to the side to prevent bed sores, and blood pooling." Any mention of GET in this or any other context (except for those who are a 7 out of 10 in fatigue, as per Dr. Lerner) is totally inappropriate.
 

Mithriel

Senior Member
Messages
690
Location
Scotland
What is totally weird to me is that these hard liners are agreeing and emphasizing PEM. Peter White says that PEM is a cardinal feature. The NICE definition is the Oxford definition (merely idiopathic chronic fatigue) plus PEM. The UK psych CBT emphasises pacing to prevent exertion and crashing.

Yet they still push their harmful GET and CBT that says exercise has been proven to only help you and never harm you and that you have 'erroneous beliefs' that have to be corrected.

They're taking their "let's see how much damage we can do to the patients and still get away with it" core approach and pushing it to the maximum extreme. They're actually admitting PEM is perhaps the central feature of ME and then pushing a 'therapy' CBT that says the exact opposite in a demeaning way to patients and forcing patients to exercise. It's sickening and bizarre.

They say PEM but as usual they give words their own twist. What they are saying this means is the soreness you get when you go to the gym for the first time in months. So having PEM just means you are deconditioned so the thing that will stop it is .......drum roll.......GET!

There is no sign that any of them have changed their central belief that CFS is a somatisation disorder and CBT is designed to make people realise that they are not really ill they just think they are. Stop thinking you are ill and accept that all that is wrong with you is deconditioning so do your GET and you will be cured.

Mithriel
 

MEKoan

Senior Member
Messages
2,630
So Easy to Overdo

I have quietly, without sharing, been feeling a little more able. On some warm days I have taken my dog down the block to the beach and slowly walked for up to an hour. I have even done this two days in a row. I would say that I have walked for up to an hour outside the house on as many as 7 days so far this month. That's 7 one hr walks in 25 days - usually with at least a day's rest between.

My knees are sore and, when I return from a walk, my forearms and hands go numb which is a new and very odd symptom. But, aside from this, and the occasional pounding heart and breathlessness which is not new, things were going quite well.

So eager was I to do this extremely pleasant thing - walk with my dog on the beach - that I have let my apartment slide perilously close to filthy and well within the realm of overwhelmingly confusing.

My cognition has not been good despite my increased ability to walk. In fact, my ability to think was rapidly deteriorating as I used my leg muscles and I have not been able to read or write without great difficulty. Until today, I was able to speak.

Early this morning I had to visit a dentist 3 blocks from my house for xrays - no dental work, just xrays. It was brutal. She inclined the chair too swiftly at one point and I nearly passed out. Even when raised slowly and incrementally, I could not talk or think in an upright position for several minutes but only stared blankly.

When I got home and lay on my couch/bed I was freezing and shivering no matter what I pulled over myself. I was in full blown malaise, thermostatic instability, weakness, visual disturbances and descending into what I like to call the mini coma which lasted for 5 hours. I'm still weak, shaky, cold, confused... and now I have all of that in a horribly cluttered and dirty apt.

I don't know if this is pertinent to this thread about the CAA but it seems to have become about how to determine what is too much or too little for us. I think my experience is illustrative of how difficult and fraught with consequences the activity of increasing activity is. It is necessary to pay attention to so many different aspects of energy use.

The effort of writing this makes me cry with fatigue and frustration at how hard it is to do - and I am by nature a ridiculously merry creature.

I believe it is only we who can understand the frighteningly delicate balance in which we live. There is a place for stretching... movement... exercise... but it would take a very skilled person intimately knowledgeable about ME to work with a person in order to help them to stay in balance with needs and abilities.

Traditional "rehabilitation" which I believe informs the practice of "graded exercise" is about pushing through the pain and no matter how much they say they understand that doesn't work for us I just don't see how they can understand this experience - this failure of mitochondria, or whatever it is - in order to help us maintain what is for us a healthy balance.

Somebody ought'a figure that out.

G'night,
Koan
 

Dreambirdie

work in progress
Messages
5,569
Location
N. California
Thanks Koan, for sharing your experience. SO much I can relate to.

Just up from bed myself--overdid this weekend due to a friend's visit. She has CFS too, but is not crashed out like I am.

We are all walking a razor's edge with figuring HOW MUCH is TOO MUCH and WHEN.
 

Dolphin

Senior Member
Messages
17,567
Cort and Tomk, I must agree. Anyone who thinks 1/4 of pwME are doing too little and should do GET is not looking at the facts. This is very disturbing to me considering these people are considered knowledgeable.
Just to be clear: what Fred Friedberg is saying is that the treatment for every single person who is in the bottom quartile of activity levels (bottom quarter) is that they should do more. (This would be a wider group than housebound people I think)

There could be some of these people who could do more just as there are some of the more active people who could do more. But I don't accept that every single one of the people in the bottom quarter needs to do more activity on its own (i.e. without another treatment helping them improve first so they can do more).
 

Lisette

Frida For All
Messages
31
Location
Seattle, WA
Jennie-- I think that the intersection with advocacy and what I understand the best of all is the topic of CBT/BET. This is where I can't stay silent. CBT/GET and why it is not only ineffective, physiological but also psychologically harmful for anyone. I don't care if someone thinks that it helped their CFS. It just cannot. It is like someone in Hawaii offering a loosely knit shawl to someone freezing to death on the tundra. Good intentions are simply inadequate in some cases.

It has occurred to me only recently by some of the posts I've read by Cort and perhaps some CFS doctors is that they don't actually know what CBT/GET really is, and that is why it doesn't seem so bad. It really would seem like we are all crazy on this issue, unless one has been through it voluntarily, enforced or even indirectly by someone well-meaning.

If you see me blasting away at CBT and GET in the future and if the CAA comes into it, please know that I am not blasting you or your work personally. I still really really want to hear what life is like for a volunteer in this current climate.

I have served on committees before, and I know that just because I have an opinion that might represent many, that doesn't mean the others are willing to listen or change their ways.

As a wise old nursing school matron said, "True knowledge is manifested in a change in behavior."

If the CAA wants to quibble about the appropriateness of therapies that focus on "changes in behavior" I will be in the thick of voices who are demanding a change in behavior from them to demonstrate that they have true knowledge of this illness.

CBT/GET is not, not, not, not and again I say, NOT the same as supportive psychotherapy or movement-based therapies.

Again, Jennie, please know that I don't know how you keep coming back and asking us for our opinions. I would be a quivering mess by now, because of the nature of this illness, and also because of my own nature. But I am learning from you. I also am learning from a lot of others, here, and especially the veterans who have seen the history of this thing come and go. I feel that there is a huge difference between an "expert" and a "veteran". I am interested in the latter, not so much the former. That is my bias.

I hope you never catch any friendly fire from me.
Lisette
 

rebecca1995

Apple, anyone?
Messages
380
Location
Northeastern US
WTF?!?

tomk:

But just to clarify what Fred Friedberg is saying. He is recommending graded activity for *all* the patients (1/4) who are least active. The fact is that many of these too might be doing too much. My glands swell up later if I walk relatively short distances. My ceiling is a lot lower than other people's (it wasn't always this way - I was mildly affected for the first few years). What the severely affected need more than most is support - but what Fred Friedberg is saying is jeopardising people getting this.

Freak-out time. Why is Fred Friedberg saying this??? :confused::eek::confused:

I'm not going to devote one more iota of energy to explaining how wrong and harmful this attitude is. See. All. My. Previous. Posts.

Frankly, this is the problem with having psychologists and psychiatrists running the major organizations.

What I love about the WPI is how they haven't been afraid to go head to head with the psychiatric lobby, instead of kowtowing, like so many of our advocacy groups.
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
CBT for CAA

"True knowledge is manifested in a change in behavior."

If the CAA wants to quibble about the appropriateness of therapies that focus on "changes in behavior" I will be in the thick of voices who are demanding a change in behavior from them to demonstrate that they have true knowledge of this illness.
Yeah, Lissette!

CAA may need CBT to correct erroneous beliefs about what a patient advocacy org is supposed to do:

"OK, Kim, now I want you to effectively advocate in front of the mirror one time before next session. Then we will ratchet it up to effectively advocating to an actual person even you're so not used to that that this will knock you on your butt for a month.":Retro smile:

Yes, Cort, I know CAA and Kim have done advocacy. But I couldn't resist. Let me blow off some steam so I don't explode. :Retro smile:
 

Dolphin

Senior Member
Messages
17,567
tomk:

But just to clarify what Fred Friedberg is saying. He is recommending graded activity for *all* the patients (1/4) who are least active. The fact is that many of these too might be doing too much. My glands swell up later if I walk relatively short distances. My ceiling is a lot lower than other people's (it wasn't always this way - I was mildly affected for the first few years). What the severely affected need more than most is support - but what Fred Friedberg is saying is jeopardising people getting this.

Freak-out time. Why is Fred Friedberg saying this??? :confused::eek::confused:

I'm not going to devote one more iota of energy to explaining how wrong and harmful this attitude is. See. All. My. Previous. Posts.

Frankly, this is the problem with having psychologists and psychiatrists running the major organizations.

What I love about the WPI is how they haven't been afraid to go head to head with the psychiatric lobby, instead of kowtowing, like so many of our advocacy groups.
Thanks for the reply, rebecca1995.

Firstly, the evidence for this:
http://www.forums.aboutmecfs.org/sh...nd-intervention.&p=58635&viewfull=1#post58635 - of course, this is only a small part of the paper but a lot of it is just a review of the literature.

This is not the first time I've seen him do this.

As to why he says this, it's hard for me to remember but reasons and speculations off the top of my head:
- he sees people who are working and generally doing a reasonable amount of activity. He has the illness himself (mild form) so puts himself in this bracket. He thinks that expecting these people to do more is not necessary. He even thinks it could be counterproductive as they are struggling with other responsibilities.
However he reads the reviews that GET and CBT based on GET help some people. The way he has analysed this in this, and previous, papers is that it must have helped somebody, so it must be the less active people.
Of course, the thing is that the effectiveness of GET and CBT based on GET has been hyped so I think he is wrong in this conclusion. The Wiborg review of three Dutch CBT trials showed there was CBT didn't bring about an increase in activity levels (although the people said their fatigue and physical functioning was better). And indeed even NICE guidelines say that there isn't evidence that GET, and CBT based on GET, work for severely affected (largely they would say, because it hasn't been tested on them in RCTs).

I'm a bit tired at the moment and don't feel inclined to re-read the paper (it's 25 pages) but that's my impression about why he came to the conclusion.

Whatever the reason is, he's wrong. I tend not to say too many things with full confidence but I feel fully confident in saying he's wrong on this.