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

MEKoan

Senior Member
Messages
2,630
Thank you for posting this Koan. I had missed that exercise during a relapse bit the first time I read this months ago. I recall at the time Dr. Donnica posted this she had said that she was happy her son was doing better and then that she was deflated the next day because he was doing badly again. I'm not sure when in that time he walked on the treadmill.

I find this extremely upsetting probably because I suffer every day and I hate to think that others are going through anything like I am especially if it's preventable.

We have to start with educating the doctors and that's what the CME does so it needs to do a good job of explaining the exercise conundrum in CFS and neither of the ones the CAA has online do. This GET is the kind of "treatment" for CFS that the CAA is teaching our doctors we need and that includes the kids who have CFS as well.

I know, Teej. We know Dr Donnica is far more aware and enlightened regarding ME/CFS than your average doc and yet she cannot overcome what she has been taught about exercise. I really do not see how we can expect your average doc. to fare better. This is exactly the problem.
 

Mithriel

Senior Member
Messages
690
Location
Scotland
I think you mean ME Research UK.

Quite right I did :Retro smile: I have never got my head round them having to change their name from MERGE.

I was even part of the research! I have an abnormal reaction to acetylcholine, it carries on having an effect when it should have cleared away.

Mithriel
 

Dolphin

Senior Member
Messages
17,567
Quite right I did :Retro smile: I have never got my head round them having to change their name from MERGE.

I was even part of the research! I have an abnormal reaction to acetylcholine, it carries on having an effect when it should have cleared away.

Mithriel
And an interesting thing is they found that this wasn't present in those with Gulf War Syndrome those with a history of ill health after definite organophosphate exposure: http://meresearch.org.uk/research/projects/methacholine.html

And it was all done on a shoe-string budget - don't know exact amount but all their studies then were under 30,000 pounds - and the ones at Dundee tended to be less again.
 

starryeyes

Senior Member
Messages
1,558
Location
Bay Area, California
I know, Teej. We know Dr Donnica is far more aware and enlightened regarding ME/CFS than your average doc and yet she cannot overcome what she has been taught about exercise. I really do not see how we can expect your average doc. to fare better. This is exactly the problem.

Well we can start by having good CME materials for the doctors. They have to take CMEs to keep their medical liscences up to date. I think PWC would be surprised at how fast changes would happen with their doctor's attitudes towards them and treatment for CFS if the CAA's CMEs were corrected to show the truth about CFS.

This is interesting Mithriel and Tom:
Conclusions

Although there are many clinical similarities between these three illnesses, our results indicate peripheral cholinergic abnormalities in the vascular endothelium of only patients with CFS, suggesting that this syndrome has a different aetiology, which might involve inhibition of vascular cholinesterase.

http://meresearch.org.uk/research/projects/methacholine.html
 

Cort

Phoenix Rising Founder
Dr. Cheney

Actually its much worse than Dr. Donnica. Many of the physicians we know appear to be totally off their rocker with regards limited exercise for CFS patients.

http://www.prohealth.com/library/showarticle.cfm?id=3157&t=CFIDS_FM


Dr. Cheney

Golden Rule: Find the boundaries of what you can do and then stay within them. Both trying to do too much, or pulling back and doing too little are counter productive. Limit setting is probably the most important thing you can do. Patients are very susceptible to push-crash phenomena and you need to learn to stay within certain boundaries. To the extent you do that, you will tend to do better. To the extent you don't, you likely will not do well.

Aerobic Training: Beyond certain limits this cannot be attempted until you are much improved. Be cautious about any aerobic exercise (any sustained activity, such as running, walking, or swimming, designed to raise the heart rate and increase oxygen flow throughout the body)......Walk, cycle or swim only as much as your body will allow, no more than 20 minutes, three times per week. Aerobic exercise past a certain point can dramatically worsen this disorder.

Anaerobic Training: The anaerobic pathway is largely intact in CFIDS. Weightlifting, isometrics, and stretching can maintain muscle tone and strength and improve the elimination of toxins formed by the pathway itself. Do low level weight lifting with 1 to 20 pounds, using all muscle groups. Lift for 10 seconds, rest for 60 seconds - repeat for each muscle group. Do lift/rest cycles no more than 20 minutes three times per week. Sequential isometric contractions can be substituted for weight lifting. (This can be done while lying down.) Still use the 10 seconds on and 60 seconds off rule.

Rebound Exercise: The bounce-back chair (a tall bungee cord-like contraption) is probably the best form of exercise for CFIDS. Low level, non-vigorous bouncing for ten to fifteen minutes every other day is best.

Less ill patients can add aerobic exercises between five-minute periods of bouncing per the videotape instructions.
 

MEKoan

Senior Member
Messages
2,630
Hey Cort,

In the interest of fairness the above was not written by Cheney. From the link provided:

The following protocol was compiled by Carol Sieverling based on published materials, a transcript of an office visit in 1998, and a transcript of a 1999 conference presentation. Please note that these recommendations are indeed generic (particularly regarding diet), and constitute a foundation that should apply to most CFS patients. However, each individual will have symptoms that require more specialized treatment, which is beyond the scope of this document. Consult with your healthcare professional before beginning any treatment plan.

So, it can more fairly be attributed to Carol Sieverling than Paul Cheney and is more than ten years old.

Peace out,
k
 

Cort

Phoenix Rising Founder
Dr. Klimas, Dr. Levine and Dr. Bateman on 'exercise'

I'm not trying to jam this in anyone's face. I understand the worry about talking about 'exercise' - that it will be misinterpreted. One way to combat the misunderstanding about exercise and CFS, though, is to overcome it with information. That's what these physicians are clearly trying to do.

I'm just trying to point out that these are very mild programs; they simply attempt to keep a patient conditioning as maximal as possible within the framework of their illness. They are not saying exercise will cure CFS and they are careful to state that it can do real harm - as anyone with CFS is obviously aware. They all propose something very similar to what is presented in the CME program.

But they are very clear that very mild exercise - when its appropriate and does not exacerbate symptoms - is helpful. I personally do not think these are very bold statements. I think they're common sense statements. I don't anything we should take umbrage at. It makes sense to me that very mild 'exercise', to the extent that you can tolerate it, is helpful. That has been my experience.

The problem with 'exercise' and CFS is that other types of exercise programs have been shoved down CFS patients throats. These are not them. These are very mild. If every doctor felt like these doctors do - we'd all be in alot better shape.

Each one has been practicing for many years and each one has seen thousands and thousands of patients and each one is highly regarded in the community.

Exercise is important, both in the day-today management of symptoms and in the overall ability to improve over time - Dr. Klimas.

Dr. Susan Levine on Exercise : "Exercise is different for patients with CFS. I would rather even use the word “movement” or name the specific activity that I want them to perform (such as walking or swimming). Movement promotes endorphin release and blood circulation, improves balance and
increases strength. But it should be done cautiously"[

The key is a regular program, no matter how short a duration, at about the same time very day.

What do you see as the greatest exercise-related risk for people with CFS?

Bateman: The greatest risk is a patient getting discouraged and falling away from all forms of exercise.
I also think some patients can develop more chronic pain or other symptoms from forcing exercise when they shouldn’t.

I encourage patients to listen to their bodies, avoid pushing too hard when it might cause the most problems but come back to what they can tolerate when feeling better.

Klimas: I have come to recognize three basic risks. First, patients who push too hard every day never have a good day and are not able to improve because they constantly cross the line of overexertion. By backing off a bit and working up gradually, they will find that their overall exercise tolerance improves.

Second, patients who have been burned by bad exercise experiences can become afraid to try and, therefore, never gain the benefit of an effective program. They don’t even know where their line of tolerance might be.

Third (and most common), patients who are clearly benefiting from a program, then relapse (no matter what the cause) are sometimes dramatically discouraged. When one of those fluke
relapses hits them, they are emotionally crushed and struggle to find the motivation to start exercising
again. The good news is that they don’t lose all of the ground they so painstakingly won. But they are temporarily set back in their training program. Encouragement is key.
 

Cort

Phoenix Rising Founder
Hey Cort,

In the interest of fairness the above was not written by Cheney. From the link provided:



So, it can more fairly be attributed to Carol Sieverling than Paul Cheney and is more than ten years old.

Peace out,
k

I think everybody realizes that Carol Sieverling has written volumes on Dr. Cheney's practice over the years and that he checks over her stuff - if you can't trust Carol who can you trust? That's Cheney and that was after he'd been practicing for how many years? 17 years on CFS? That's Paul Cheney right there.
 

Orla

Senior Member
Messages
708
Location
Ireland
Hi Teej,

In the 3 to 5 minute appointments I get with my doctors I don't even want exercise to come up. But they usually recommend it in spite of everything I tell them about how I have to approach it. :worried:

I wouldn't want exercise to come up either, as there is not question of me having enough energy for it when I am struggling with basic tasks. Unfortunately Bateman suggests to doctors bringing it up at every appointment [my emphasis in bold]:

Discuss physical conditioning activities in every visit.
Just as I review medications, current symptoms and level of function, I include a question about efforts to become better physically conditioned. Everything counts: walking up and down stairs in the home, sitting on the grass or a gel pillow and pulling a few weeds, walking the dog. Point out and commend
what is being done, and think of ways to gradually push toward, but not over, the threshold
and discover its nature. Confirm with patients the activities they have discovered helpful (ie, stretching helps reduce pain and stiffness; being stronger makes getting around easier).
http://www.iacfsme.org/Portals/0/pdf/CFSandtheExcerciseConundrum.pdf


:eek: :eek: :eek: :eek: And that is on the IACFSME website.

I would not be happy if my doctor did this. I am already at my threshold, and sometimes basic things I have to get done cause me to overdo it.

I think there is a contradiction in the thinking above. On the one hand there is a recognition of the patients having a threshold, on the other there is an idea that patients can do more over time and that they can increase their conditioning.

Most patients are already doing as much as they can, or as close to it as makes no difference (the severe in particular will be maxed out doing basic things). Most need to be encouraged to restrain themselves, not try to increase conditioning (which would involve doing more, presumably, by definition).

Orla
 

Cort

Phoenix Rising Founder
Dr. Bested and Alan Logan on "Exercise"

from Hope and Help For Chronic fatigue syndrome and fibromyalgia by Alison Bested and Alan Logan

I'm not trying to discount anybody's experience but I do want to point out that the exercise prescriptions in the CME are very similar to those found in other documents by physicians that are well respected in the community. I'm trying to put the CME program in the context of other physicians prescriptions.

Some CFS/FM patients have lost muscle mass as a result of their severe fatigue and immobility. Consequently they are at risk of developing osteoporosis or osteopenia...Patients need to use their muscles as often as possible to keep the muscles that they do have and to build new muscles to rebuild their strength and improve their energy. The key is to rebuild the muscle mass without crashing. The principles are the same no matter what your energy level.

So if you are bedridden and using a commode start by doing some range of motion exercises while you're in bed. This means that you move your arms and legs in all directions they can go while you're in bed. By putting your limbs through their full range of motion, he slowly gain muscle strength and also prevent muscle shortening or contracture. .... Make sure that you can manage exercise before you try to do too much. always start with what you know you can do; it's always better to start exercising below what you can do. in other words start low and go slow..

If you think the exercises are too much for you, only do one or two repetitions to begin with.

The key is to be consistent in your exercise so that you gradually rebuild your muscles, increasing slowly at your own rate. If you do not recover the same day and you have postexertional fatigue the next day you have done too much for the energy available to you.

The Ground Rules

  • Even something small is better than nothing
  • be super cautious about the good days
  • rest during your good energy and poor energy times to recharge your batteries, etc.
  • small changes over time, a gradual practice
 

jackie

Senior Member
Messages
591
Teej and Orla...i agree, and I'm NOT happy when they DO suggest this...which btw - (as i see one or more of the three docs i have at least every three months sometimes more often...and that's not including the odd cardiologist now and then) is, well...EVERY three months! every three months (maybe less) we do this same dance! (Excluding, of course, my I.D. Doc who knows better)

They dutifully question me and suggest the same stuff..i wearily reply with the same yada,yada,yada answers (excuses, I'm sure, to them)

(Maybe if one of them gave me a gold sticker or a sucker or something...along with their "praises" for trying a little harder....?)

j
 

Cort

Phoenix Rising Founder
Bruce Campbell on "Exercise"

from "The patient's guide to chronic fatigue syndrome and fibromyalgia" by Bruce Campbell

This is very similar to all the other programs. These are just snippets of it. If the time is not right for discussing exercise, then its not right.......but at least we can say that the CME is but not unusual in its ideas and they are similar those found by the respected people in the field. I'sure that I've infuriated everyone! Oh well!

Exercise programs for CFS should be tailored to the unique situation of each patient. ..

Exercise has a different purpose for CFS patients.... an appropriate goal for CFS would be to improve fitness enough to make daily activities easier. Because many CFS patients have a tight limit on how much activity they can do without increasing symptoms, doing exercise might require that some other activities be dropped or rescheduled.

Exercise programs for CFS often focus on flexibility and strength. Endurance exercise may be helpful but only for higher functioning patients.

"Finding a safe level of exercise, one that does not intensify your symptoms. The goal is to have a sustainable level of effort that you can do several times a week....... is usually advisable to keep the same duration goal for its considerable period of time and increase the duration very gradually, as tolerated by the body.

To evaluate your program and troubleshoot problems consider keeping a record of your exercise and the consequences.
 

Dolphin

Senior Member
Messages
17,567
but at least we can say that the CME is but not unusual in its ideas and they are similar those found by the respected people in the field.
The main point to learn from this is that if you just have Northern American doctors coming up with guidelines, you may come up with problematic (in my mind) guidelines.
UK doctors don't all recommend exercise.

Dr. Martin Lerner only recommends exercise when you get to 7 on his scale http://www.cfsviraltreatment.com/energy_index_score/index.html (which is high functioning):
No naps in bed. Up 7:00 a.m. to 9:00p.m. Able to work a sedentary job plus light housekeeping

Aside: This is a full-time job, as this is point 6:
Daily naps in bed, may maintain a 40 hour sedentary work week plus light, limited housekeeping and/or social activities

I think Dr. Campbell's program is mainly a pacing program.

Prof. Jason recommends energy envelope and pacing methods and pacing methods came out better than the exercise intervention in his 2007 trial.
 

Cort

Phoenix Rising Founder
I think there is a contradiction in the thinking above. On the one hand there is a recognition of the patients having a threshold, on the other there is an idea that patients can do more over time and that they can increase their conditioning.

Most patients are already doing as much as they can, or as close to it as makes no difference (the severe in particular will be maxed out doing basic things). Most need to be encouraged to restrain themselves, not try to increase conditioning (which would involve doing more, presumably, by definition). - Orla

What I think I have missed all the exercise that I've done is that I don't do this:

Point out and commend
what is being done, and think of ways to gradually push toward, but not over, the threshold and discover its nature.

I don't gradually push toward but not over my threshold. I usually go over my threshold when I exercise. I rarely use the energy bank idea. Even when I don't overdo it think I rarely leave anything on the table - I don't leave anything to build up with.

With things like strength conditioning I'm too freaked out about it to even try but when I did try I would do things like 10 reps with a 5 pound weight several times over say 10 minutes. My muscles would just freak out - it was ridiculous. But what if I REALLY took it slowly - just a couple reps every couple of minutes. Would I have more muscle tone? I'll bet I would.

I imagine that few with people have done this with the kind of discipline and slowness it requires. Even now after thirty years I still want to go for the burn when I exercise! That's like hardwired in me.

Bruce Campbell also notes, logically, that many people are going to have to give up other activities in order to do this kind of stuff.
 

Orla

Senior Member
Messages
708
Location
Ireland
Exercise Vs pacing

Hi Cort and all,

I would have a problem with parts of all of those comments on exercise. I have seen more recent stuff by Cheney making very strong warnings about the problems with exercise.

The problem with promoting exercise is that I don't think it works (based on looking at research and talking to hundreds of patients, maybe more). And most patients are alredy pushing it, and either cannot exercise at all, or cannot exercise and carry out activities such as work, caring for their children and so on. There is also the problem that once you put the idea into patients heads that they can improve through exercise, it tends to be something of a recepie for disaster.

I feel myself that there is a US/UK difference on this issue (I am talking about the good doctors here. Before anyone has a heart attack at what I am about to say, I am not from the UK).

In the UK exercise intolerance was always emphasised as a cardinal sign of ME/CFS. Pacing has generally been recommended by the doctors who are good on ME/CFS. So patients can increase if they feel able, but the idea of exercise in itself as therapuetic treatment is generally not promoted by the good knowledgable doctors. The UK doctors are often more critical of graded exercise and know that the deconditioning stuff is unproven (and that there is evidence against it) and that the push to get patients to exercise to improve originally come from the CBT/Psychiatric school.

But my impression of some US doctors after watching talks and reading some of the literature is that many US doctors who are really good on some issues are quite poor on the exercise ones. They often suggest exercise where the UK doctors would not (and the UK ones would stress pacing.) I think there could be a few reasons for this (some of this is pure speculation on my part).

They might read about Eurpean studies which allegedly found graded exercise to be helpful, but didn't understand that many of these studies use very loose entry criteria (Oxford), for example.

And maybe the doctors in the UK, knowing the characters who are involved in the studies, are more wary of just taking the alleged results at face value and maybe they are inclined to be more questionning and dig deeper, and basically have a closer look??? There are specific people like Ellen Goudsmit PhD (a psychoologist with ME herself) who have done a lot of work in this area. Also some of the more vocal people in the UK are doctors, psychologists and the like who have the illness themselves so that might add to it also. They read a lot of the literature but having the illness also means they have personal experience.

Of course you do have Leonard Jason in the US. But I have not seen a lot of good doctors in the US advocate Pacing and be very good on the exercise issue. I do remember seeing a talk by Chia and he said that one thing he looks for is exercise intolerance in order to help him diagnose. I cannot remember exactly what he said now, but I remember thinking that it was exceptionally strong and good on exercise for a US doctor (he has a son with the condition).

One more thing is a lot of the US doctors seem to think Fibromyalgia and ME are basically the same, or very similar. I think this view is less common in the UK. Fibro patients do not necessarily have exercise intolerance (not the way we do) and some may even benefit from some exercise.

And I have often wondered if many of the US doctors see severe or very severe patients regularly because of the sorts of recommendations they seem to make. I think people were also thinking this about Bateman which is what led to some people asking whether Bateman saw severe patients (and one might have to see them regularly for their experience to impact on one's thinking). It was not a personal attack. It was because people read what was in the CME about severe patients and it just didn't fit their experience or knowledge. I have often wondered this myself from listening to what some (very good in general) US doctors have said.

And just in case I have wounded people in the US, on the other hand I think many US doctors are very interesting on testing for things likely to be abnormal in ME. (This may be partly because the US healthcare system is more privatised and the UK one more public so they are very restriced in the UK).

Anyway, just a few thoughts,

Orla
 

starryeyes

Senior Member
Messages
1,558
Location
Bay Area, California
Hi Teej,



I wouldn't want exercise to come up either, as there is not question of me having enough energy for it when I am struggling with basic tasks. Unfortunately Bateman suggests to doctors bringing it up at every appointment [my emphasis in bold]:




:eek: :eek: :eek: :eek: And that is on the IACFSME website.

I would not be happy if my doctor did this. I am already at my threshold, and sometimes basic things I have to get done cause me to overdo it.

I think there is a contradiction in the thinking above. On the one hand there is a recognition of the patients having a threshold, on the other there is an idea that patients can do more over time and that they can increase their conditioning.

Most patients are already doing as much as they can, or as close to it as makes no difference (the severe in particular will be maxed out doing basic things). Most need to be encouraged to restrain themselves, not try to increase conditioning (which would involve doing more, presumably, by definition).

Orla

That's disheartening Orla. I know my doctor has been told to say it because it makes no sense for him to say it at every appt. after I have thoroughly explained my situation.

Do we have any doctors or organizations that actually get the problem with Post Exertional Exacerbation of Symptoms in ME/CFS?
 

Cort

Phoenix Rising Founder
Dr. Enlander on ' Exercise'

from I'm Fatigued. Is it a syndrome? CFS Handbook by Derek Enlander

Even Dr. Enlander, one of our foremost advocates for physiological research, and a doctor who relies heavily on immune treatments as an exercise section in his little book:

"Some patients experience profound fatigue following even modest exercise and is the primary factor in the low activity levels in these patients. A recent study found, however, that 75% of patients who are able to engage in exercise, particularly aerobic exercise, report improvement in fatigue, normal functioning and fitness after a year.

Exercise slowly without overexercising to prevent relapse. Patients should gradually increase exercise by 10% per week, ovoid overexertion. An incremental program activity, beginning with as little as 3 to 5 minutes of exercise a day, is suggested, although capacity varies greatly among CFS sufferers. Setbacks may occur the patient should not be discouraged, rather, they should experiment with various forms of physical activity that suit their energy level"
By the way, while we're speaking of exercise, I really recommend getting a voice activation system. I have Dragon's Naturally and, honestly, I've had a ton of difficulty getting it to work but its now working now it just whips this stuff out. I am literally simply speaking into the microphone the sentences are flying out. I would never have been able to write all this down - it would have been exhausting! :cool: When It works it makes it so much easier to communicate- then you can use your energy for other things.

Dr. Enlander goes further than most physicians, I think, and note that he says patients who are able to exercise but he still has still has this section in their and he notes that capacity varies greatly.
 

Dolphin

Senior Member
Messages
17,567
The main point to learn from this is that if you just have Northern American doctors coming up with guidelines, you may come up with problematic (in my mind) guidelines.
UK doctors don't all recommend exercise.

Dr. Martin Lerner only recommends exercise when you get to 7 on his scale http://www.cfsviraltreatment.com/energy_index_score/index.html (which is high functioning):


Aside: This is a full-time job as this is point 6:


I think Dr. Campbell's program is mainly a pacing program.

Prof. Jason recommends energy envelope and pacing methods and pacing methods came out better than the exercise intervention in his 2007 trial.

Looking at those names and other professionals I people I consider "very good" on the energy management issue e.g. Dr. Charles Shepherd, Dr. Ellen Goudsmit, etc, I think panels drawing up management guidelines should ideally be made up of lots of patients incl. professionals who are patients!
People who live with patients are often good as well e.g. Dr. Weir.