The CAA Pamphlet to Educate Doctors

[fresh_eyes]

If we were to strike down exercise therapy from CAA's pamphlet for clinicians, isn't that same as abandoning it?

From what I can tell, physical therapy, GET, etc. as they are practiced seem to be based on a model that the patient doesn't want to exercise, and must be pushed. On the contrary, seems like every CFS patient I come into contact with has the opposite problem, and tries to do *too much* activity. That was certainly the case for me. I took me years (of push/crash) to learn that listening to my body was no longer optional for me, and I still struggle with putting it into practice consistently.

I think a helpful form of "therapy" in CFS might involve teaching people that they have to listen to their bodies, and techniques for doing so.

 

[PoetInSF]

From what I can tell, physical therapy, GET, etc. as they are practiced seem to be based on a model that the patient doesn't want to exercise, and must be pushed.

All the more reason to educate clinicians about it. And I think the pamphlet in question does that. So does Canadian Consensus document in its treatment protocol section.

I think a helpful form of "therapy" in CFS might involve teaching people that they have to listen to their bodies, and techniques for doing so.

On the contrary, I learned not to listen to my body too much. It is when I listen too much that I get into push/crash cycle: push when I feel better and then let go to atrophy after I crash. The trick has been a consistent schedule to avoid pushing when I feel better and then languish when I feel worse. That is not to say I force myself to exercise when I'm really sick. When I crash, I try to give it N days and then get back on the program slowly increasing to pre-crash level rather than purely go by the feeling. It has been for me the amount of rest and not how I feel that matters. (Admittedly, however, I have to rely on how I feel to determine the amount of rest required for a given crash).

 

[fresh_eyes]

On the contrary, I learned not to listen to my body too much. It is when I listen too much that I get into push/crash cycle: push when I feel better and then let go to atrophy after I crash.

Hmm, interesting. Very different from my experience. I learned that by listening very closely, I could feel the subtle signals that I was overdoing and stop before I got to the point of crashing. At that point in my illness, a schedule re activity was completely out of the question, my health was just too erratic. Over the years of heeding my body's signals, I found I could increase activity incrementally, and I've now gotten to the point where I am able to be reasonably active on a regular basis, with only occasional extra enforced rest.

 

[gracenote]

yes and no

On the contrary, I learned not to listen to my body too much. It is when I listen too much that I get into push/crash cycle: push when I feel better and then let go to atrophy when I crash. The trick has been a consistent schedule to avoid pushing when I feel better and then languish when I feel worse.

You bring up an interesting point PoetInSF. I've had to learn not the "trust" when I'm feeling better. It seems like it means that I have extra energy and that I can increase my activity. I know now that that is mostly not true. I now try to do much less than I think I can and try to enjoy myself not doing more. It's the difference between lying on the couch in utter pain and exhaustion trying to find something, anything, to take me out of my misery, and having a "day off" to lounge around carefree you know, like everybody thinks we are doing all the time. So I try to enjoy maybe puttering around the house, enjoy watching something on TV, enjoy kicking back and getting to go online, enjoy staying in my PJs all day. It may not be any different than what I've been doing for days and days on end, but now I can have a little more presence with it. I DO have to work at it as I would rather be DOING something else, but I've found these times that I don't use up all my extra energy can feel a little bit lighter and fuller and less desperate.

On the other hand, when my body is feeling better it has less interference to deal with it's not having to fight against a raised temperature, muscles that feel achy and heavy, a heart that feels like it's struggling mightily, blood that feels like molasses in my veins, a brain that just won't put two and two together, etc. so there is more room to explore the boundary a little bit.

It still amazes me though. It takes one good day, or maybe even one good hour, for me to feel like I'm well and this dreaded disease is over. I don't understand all this about "illness beliefs" because when I experience those moments when my body seems to remember how to function, it is like the last 27 years never happened. I'm good to go. I'm ready. So for me it's always the challenge to remind myself that maybe . . . not . . . yet. But that hope, that vitality is right there ready to begin the rest of my life.

I think that is amazing.

 

[leelaplay]

I think that is amazing.

WOW gracenote, I think you're amazing (hmmm - amazing grace). Your ability to describe having ME/CFS from in the inside is profound.

I am extremely thankful for those moments that my body/brain feels any better and I get strong memories of what healthy feels like. They feed my on-going hope that this disease will drop from me, like a piece of clothing, and the healthy me will be there intact.

 

[Martlet]

On the contrary, I learned not to listen to my body too much. It is when I listen too much that I get into push/crash cycle: push when I feel better and then let go to atrophy after I crash. The trick has been a consistent schedule to avoid pushing when I feel better and then languish when I feel worse.

That has been my experience too. About three months in, I started keeping graphs - simple ones with total hours of activity each day and just two symptoms, pain and fatigue - and a pattern quickly emerged. On good days, I pushed way too hard, only to crash the next, then take a few days to recover. Eventually, I established a "safe" level, stuck to it for a while, then very gradually probed and tested.

At the same time, like fresh-eyes, I began to notice very subtle changes in the way I felt, not to mention that I have a husband with eyes like a hawk who would warn me of an imminent crash long before I saw it coming.

So, I found that sticking to a schedule kept me relatively stable, but I wanted to increase activity and that's when listening to my body (or my husband, which was actually harder) came in.

 

[Cort]

I agree that this

Success of this stage is dependent on patients learning to monitor heart rate so they avoid pushing too hard and triggering relapse. A functional goal would be for the patient to engage in activities of daily living without precipitating postexertional malaise.

need more explanation. Its comes from Staci Stevens work on metabolic dysfunction ( which the CAA funded by the way). The CAA does not have a comprehensive treatment section -which is what at least some comments are alluding to and they really should.

I'm working on the exercise section on my website. Here's the part on heart rate monitor

http://aboutmecfs.org/Trt/TrtExercise.aspx

Use a Heart Monitor to Stay Within Your Aerobic Safety Zone * - Researchers have found that a significant subset of ME/CFS patients appear to have a metabolic dysfunction that inhibits their ability to exercise. These researchers are able, using sophisticated exercise tests, to chart the heart rate at which aerobic activity begins to go bad. Once they have their target heart rate patients can use inexpensive heart monitors to stay below this heart rate.* Many are able to increase their health and their ability to exercise by rigorously staying within their aerobic safety zone.

Many patients dont have the chance to go throw expensive aerobic testing to determine their safe heart rate but a general guideline has emerged. &*Each persons maximum safe heart rate is different but Eleanor Stein, M.D. reports that 120 beats/minute is a good place to start. While doing this try the five up, five down method; five minutes of activity up, five minutes of rest, five minutes of activity, five minutes of rest, etc. Many people can increase both the amount of exercise and some can even increase the intensity (ie heartrate) of exercise they can tolerate without flaring if they follow this approach.*

Check out a video discussion of the role heart rate and exercise play in chronic fatigue syndrome by Staci Stevens of the Pacific Fatigue Lab
Check the best article on this subject* - Dr. Bateman's The Exercise Conundrum

Hotpoint: Research studies have shown again and again that the real abnormalities in ME/CFS show up when the system theyre examining is put under stress.* This holds true across endocrine, immune and nervous system tests; stress - whether its physical, mental or emotional - equates with reduced performance in this disease.* Some researchers, in fact, are asking that all research studies stress their chronic fatigue syndrome patients before they test them.*

 

[Mithriel]

I had a serious relapse which took me almost a year to recover from by walking gently on a treadmill for 1 minute then lying down for 20 minutes, once a day for a week.

I still believe that any mention of exercise in the context of CFS or ME must always contain warning of the damage it can do and the fact there is no way of telling which patients it will damage.

Knowing the risk involved in any procedure, and minimising it, is at the heart of ethical medicine and should apply to people with CFS as much as to anyone else.

As the situation stands it seems like everyone from the CDC to the CAA act as if it doesn't matter that a few patients become severely ill if there are marginal improvements to some.

Doctors will skim leaflets, their eyes will fall on do more exercise which fits with the ideas they already have so will be what they remember. The risks must be there in big letters so they can't be missed even at the slightest glance.

It doesn't seem to be too much to ask and I am bemused that people are arguing against it.

Mithriel

 

[Dr. Yes]

Mithriel, all your posts here have been outstanding and my jaw keeps dropping when I see a few posters continue to argue the point. Are any of you reading her posts? Or any of our's? There's no point participating in a "conversation" if you're going to ignore the other person's key point, is there?

The only thing I would correct in her last post would be:

As the situation stands it seems like everyone from the CDC to the CAA act as if it doesn't matter that a few patients become severely ill if there are marginal improvements to some.

Given what I have learned by actually reading other people's posts and doing minimal research on that subject, I would definitely change "a few" to "many".

Again, great job Mithriel (and many others).

And would those who continue to ignore her point please, please pay attention?

 

[Advocate]

Sure the CAA should have more recognition of the problems in the UK but almost all - in fact ALL the well known physicians that treat this disorder in the US that I can think of (Peterson, Cheney, Klimas, Bateman, Enlander, etc.) - treat this as a legitimate, physiologically based disorder. And the vast amount of the CAA's literature on CFS (as well as their research program) is devoted to that interpretation of CFS.

Yes, Dr. Enlander is very clear about his own position in this letter posted last week on CoCure, where he writes that the psychiatrists who control policy in the UK have, "not only failed to recognize their [ME patients'] disease but have gone one step further and labeled them as psychotic or neurotic."

Derek Enlander M.D.
860 Fifth Avenue
New York NY 10065
212 794 2000
denlander@aol.com

23 Dec 2009

Dear Prime Minister

New medical research, relating to M.E. (myalgic
encephalomyelitis) and the XMRV virus, have
shattered the MRC belief that M.E. is a psychiatric
condition.

The Chief Medical Officer( CMO) and MRC have for
many decades adhered to the idea that these
patients could be lined up as a psychiatric problem.

Certain British psychiatrists used this notion for their
own self interest in obtaining government research
grants and conflict of interest payment from
disability insurance companies.

The recent M.E. research is not necessarily related
to the resignation of Sir Liam Donaldson from the
post of Chief Medical Officer(CMO) together with the
resignation of the chief executive of the Medical
Research Council, Sir Leszek Borysiewicz.

These resignations however give the present or next
government a chance to clean house.

Both these gentlemen have failed the thousands of
patients who suffer from myalgic encephalomyelitis
(M.E.), not only failed to recognize their disease but
have gone one step further and labeled them as
psychotic or neurotic.

They have thus been deprived of proper treatment
and relegated to a psychological cognitive training or
worse still a Graded Exercise Therapy (GET), both of
which are defined in medical literature as useless
and in some cases dangerous.

Both these gentlemen failed to react or examine the
motives of psychiatrists promoting these methods.

M.E. is a physical disease and British Medical
establishment must recognize the fact and
underwrite proper research rather that promote
useless psychiatric methods.

Yours Sincerely

Dr Derek Enlander
New York

 

[Advocate]

I still believe that any mention of exercise in the context of CFS or ME must always contain warning of the damage it can do and the fact there is no way of telling which patients it will damage.

Mithriel

Mithriel, you are absolutely correct. I added the bold.

 

[starryeyes]

Andrew wrote: The cautions about avoiding PEM need to be as prominent as a good warning label.

I totally agree with everything you said in that post # 100, Andrew and Mithriel and others have made awesome points here as well.

Cort, Use a Heart Monitor to Stay Within Your Aerobic Safety Zone is an excellent article and exactly the kind of advice and information our doctors and we need.

 

[hvs]

And perhaps its time to remind ourselves an others of the simple truth that mere deconditioning and other disadvantages associated with a lack of exercise are about the least of our problems! We have the VO2 max scores of post-heart attack heart disease patients, seriously messed-up immune systems, brain damage evident on SPECT and other scans, and at least some proportion of our community carries a deadly oncogenic retrovirus!

God bless all of our fellow patients who see their lives improved by exercise within their (usually pathetic ) capacity. But at the end of the day its about as curative for real CFS patients as it would be for AIDS patients. Sure, the CAA can endorse the benefits that some undefined portion of our community have experienced due to exercise, as long as the take-home message is that it is not a cure by any stretch and that exercise, in fact, can be uniquely injurious (PEM) to CFS patients.

But as I said before, every word about exercise needs to be spoken/written with an eye to its political ramifications in a world populated with the Wessleys/Whites/Reeves.

 

[Andrew]

Some thoughts about CBT.

All conclusions drawn from research driven by the Oxford guidelines should be excluded.

Doctors should be told that the understanding of this area has been clouded by research that includes subjects who do not have CFS/ME.

The term "cognitive behavioral therapy" upsets patients and misleads doctors, but we still want to help pwc. So, what would be wrong with referring for debilitating illness management. And then patients can be coached in how to deal with practical and emotional issues.

 

[The Phantom]

Yes!

Some thoughts about CBT.

All conclusions drawn from research driven by the Oxford guidelines should be excluded.

Doctors should be told that the understanding of this area has been clouded by research that includes subjects who do not have CFS/ME.

The term "cognitive behavioral therapy" upsets patients and misleads doctors, but we still want to help pwc. So, what would be wrong with referring for debilitating illness management. And then patients can be coached in how to deal with practical and emotional issues.

For the first 2 thoughts (sorry I can't seem to make the multiquote function work--I'm sort of a semi-literate computer user)

Hear, hear! Ditto for graded exercise therapy. And, in addition to the Oxford criteria all research using the Reeves definition should be excluded.

As for the third thought:
How about just writing a simple statement like, "As in other chronic illnesses, some patients may benefit from psychosocial support focussing on issues related to adjusting to their illness." No focus on a particular type of psychotherapy, like CBT, or much different needs for people with ME/CFS versus cancer, diabetes, heart disease, etc. And just one statement, so the message isn't: all ME/CFS patients are nut jobs and should be immediately referred to a psychiatrist. AND make it clear that some patients are coping well emotionally and going to a shrink is just a waste of their precious energy.

 

[Dr. Yes]

I like your points Andrew. And your new look. Have you lost weight?

 

[Samuel]

What you say: "As in other chronic illnesses, some patients
may benefit from psychosocial support focussing on issues
related to adjusting to their illness."

What they hear: "blah blah blah blah blah, blah blah blah
blah blah PSYCHOSOCIAL blah blah blah blah blah blah blah
blah blah blah."

 

[Andrew]

I like your points Andrew. And your new look. Have you lost weight?

Funny thing, I didn't plan to have my avatar be so small. Maybe I got mixed up when I sized it. But I'm glad the new lean look is okay.

 

[PoetInSF]

I had a serious relapse which took me almost a year to recover from by walking gently on a treadmill for 1 minute then lying down for 20 minutes, once a day for a week.

I read the pamphlet in the light of this, and I'd suggest following warnings:

Warning 1: Do not start any aerobic or weight bearing exercise program unless you are well enough to take care the business of living (cooking, bathing, cleaning, etc) or walk a few blocks without crashing. Limit your exercise to sitting up and mild stretching till then.

Warning 2: Give at least 48 hours of rest between exercise sessions in order to ensure that the previous session does not trigger post-exertional malaise.

 

[Andrew]

Its as a patient that I'm urging that the good that the CAA does gets across as well. I'm concerned that that aspect of the organization does not get across much. Because I'm excited at some of the things that they are currently doing I definitely don't want that organization to go down. I want them to thrive - and adjust. I'm glad that Board Members are interested and listening to the patient community.

Suffice it to say that I agree that having Peter White up there was a real boner and that the organization has things to work on.

The Oxford/White criteria is worse than the empirical, and the CAA has come out against the empirical. So this promotion of Peter White's research is probably an oversight. I've emailed them a link to this thread, so they can know about this oversight and lack of PEM prevention info. IMO, the first step should be removing the PDF.