To exercise or not to exercise in chronic fatigue syndrome?

[Robin]

Pacing vs. cardio workout - rethinking exercise

I recently read this article in Time magazine about weight loss, which argued that exercise isn't as nearly as important as diet. (I linked to the "print this article page" because there's less ads and it's on 1 page instead of 4.) If you've ever struggled with weight issues it's very interesting.

Later in the article, the writer discusses the definition of exercise which struck me as really pertinent to CFS.

But there's some confusion about whether it is exercise sweaty, exhausting, hunger-producing bursts of activity done exclusively to benefit our health that leads to all these benefits or something far simpler: regularly moving during our waking hours.

and later...

Actually, it's not clear that vigorous exercise like running carries more benefits than a moderately strenuous activity like walking while carrying groceries. You regularly hear about the benefits of exercise in news stories, but if you read the academic papers on which these stories are based, you frequently see that the research subjects who were studied didn't clobber themselves on the elliptical machine. A routine example: in June the Association for Psychological Science issued a news release saying that "physical exercise ... may indeed preserve or enhance various aspects of cognitive functioning." But in fact, those who had better cognitive function merely walked more and climbed more stairs. They didn't even walk faster; walking speed wasn't correlated with cognitive ability.

So, I got to thinking about CFS of course. If I walk for ten minutes on a treadmill, I'll be in bed for most of the day and probably not be very functional the next day. BUT, if I pace myself I can do a lot of little things -- empty the dishwasher, take the dog out and throw his ball (bending and walking), run a load of laundry, change the sheets on my bed. I need to lie down in between tasks of course, but I can exert much more energy throughout the day with pacing vs. only a few minutes on a treadmill. And, I will be able to function the next day!

There's such an inclination in the medical community to get us on treadmills and get our heart rates up, but, it looks like this type of thinking may not even be that important for healthy people, much less people with CFS.

There's also growing evidence that when it comes to preventing certain diseases, losing weight may be more important than improving cardiovascular health. In June, Northwestern University researchers released the results of the longest observational study ever to investigate the relationship between aerobic fitness and the development of diabetes. The results? Being aerobically fit was far less important than having a normal body mass index in preventing the disease. And as we have seen, exercise often does little to help heavy people reach a normal weight.

We're always learning new things in medical research. This is just one little article and I'm sure there's a lot of criticism out there about it.

But, I've been lamenting for years the fact that I can't do cardio exercise and the implications of that for my overall health. But, maybe in my own way, I'm finding ways to be active within my limitations.

 

[leelaplay]

The Exercise Guidance Note - Australia

This was posted by Sussana Agardy on co-cure on Dec 1 09

I liked this article overall. Fairly good summary, although I think that the warning that many people are unable to increase their energy envelop at all could have come earlier, as could have the idea that relapse often happens for unknown causes, independent of energy pacing. I always like it when someone else has collated the references for me. Could perhaps be more succinct for easy use by medical professionals.

And I like the term payback she uses interchangeably for post-exertional malaise/fatigue. That's definitely what it feels like to me sometimes, FATE saying "hah - you thought you could slip in a bit more movement and/or thought!? - take that - 'thwack'" And down I go.

(S) The Exercise Guidance Note below is intended to be a short summary of exercise issues in ME/CFS, which I hope can be easily read by doctors and patients. The pacing program and other statements are adapted from Dr Lewis's book (Reference 2.) The article has appeared in Emerge, the major Australian ME/CFS newsletter.

May be reposted


EXERCISE/ACTIVITY GUIDANCE NOTE
FOR Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS)

Compiled by Susanna Agardy


People with ME/CFS react to exercise/activity differently from healthy people. While healthy people and even those with other medical conditions find exercise invigorating and strengthening, people with ME/CFS are unable to sustain activity/exercise for normal periods and become exceptionally exhausted. Exhaustion may set in immediately or it may be delayed by as much as one or two days. This reaction is called payback or post-exertional malaise. It may be triggered by relatively minor physical exertion such as a walk, attending a family function, or mental effort and stress which could have been easily tolerated before the onset of ME/CFS.

Post-exertional malaise is the most exceptional feature of ME/CFS. Other common symptoms are: fatigue, sore throat, cognitive dysfunction, sleep disorder, pain, inability to stand for any length of time (Orthostatic Intolerance), sensitivities to food, drugs and chemicals, and many others. Exercise may be followed by exhaustion and additional pain, with tingling and twitching of muscles. Many other symptoms may also get worse, even symptoms which are not normally thought of as being the result of exercise (eg. cognitive dysfunction). Recovery may take days or weeks, depending on the extent of exertion. For this reason, levels of activity which are excessive for the particular person cannot be repeated day after day without risk of serious relapse.

Research has shown that symptoms of ME/CFS are related to impaired immune, neurological and hormonal responses, infections, mitochondrial dysfunction, channelopathy, oxidative stress and more. There are heart, brain, muscle and other body system irregularities. The aerobic pathways in people with ME/CFS are also damaged. These make it impossible to maintain and recover from exercise in normal fashion.

People with ME/CFS are affected to varying degrees, with varying exercise capacity and with differing symptoms. Some are able to work, some are capable of moderate activity such as shopping and social activities, while others are housebound or bedridden. The condition can fluctuate and people with ME/CFS can improve significantly, some remain the same for many years, while others become worse.

Recommendations of Graded Exercise Therapy (GET) for ME/CFS are controversial and are mostly based on the assumption that the illness is the result of dysfunctional thought processes, abnormal illness behaviour and physical deconditioning. Studies of GET do not ensure that the participants included suffer from serious symptoms of ME/CFS such as post-exertional malaise and mostly use loose, fatigue-based criteria, allowing mixed groups of fatigued participants to be included. Although overall improvement of fatigue is usually reported, there is no evidence in any study that GET improves post-exertional malaise and other symptoms of ME/CFS. Possible adverse effects are ignored even when there are high rates of dropping out and non-compliance. More seriously affected people would be unable to participate in such studies, yet, the results are generalised to them. Recommendations for GET ignore the risk of harm indicated by other research and the frequent worsening of symptoms following exercise reported by people with ME/CFS.

There are many medical issues to be addressed in ME/CFS and some treatments may assist although there is no cure. A health professional who is knowledgeable about the illness should be consulted. Managing total activity levels is one essential step in dealing with the illness. This includes self-care, housework, employment, social activities and mental activity as all activity makes demands on energy. The level of activity/exercise needs to be carefully managed at all phases of the illness to avoid deterioration. It needs to be accepted that many people with ME/CFS may not regain their pre-illness capacity.

Pacing, or keeping within your boundaries, is designed to ensure that you do not overdo activity/exercise and at the same time avoid deconditioning. Pacing, as shown in the steps below, is recommended:


* Establish the total exercise/activity level you are capable of without any payback or post-exertional malaise. A pedometer or actimeter may be helpful in measuring the amount of physical activity you have done on any day.

* To begin with, you need to do less, so that eventually you increase the chance of doing more.

* Maintain the level of activity/exercise that you can manage and stay on this plateau until you have a reserve of energy. The correct level of activity/exercise is that which can be repeated the next day without any payback.

* Do not move to the next level of activity/exercise until you have the reserve which enables you to increase your activity level without payback.

* Repeat the pattern of staying at the next plateau of activity/exercise until you are able increase it without payback. You may reach a limit which should not be exceeded. You may need to stay at this level of activity.

* Balance physical and mental activity with rest, dividing activity into short segments, alternated with rest. Rigid schedules of activity/exercise should be avoided and activity should be tailored to your level of ability.

* If you have overdone activity/exercise or suffer a relapse for any reason, decrease your activity/exercise and rest more. Repeatedly overdoing it may cause a severe and long-lasting relapse, bringing with it a worsening of many ME/CFS symptoms.

* You need to do the correct type of exercise:

Aerobic exercise can be damaging and should be avoided unless you can already do this every day without payback. Aerobic exercise includes running, swimming and cycling - any exercise which causes an increased heart-rate;

Anaerobic exercise is recommended. This involves exercise such as lifting and stretching, which can be done more easily without payback.

Listen to your body, do not push beyond your limits and get plenty of rest!

REFERENCES:

1. Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Clinical Case Definition and Guidelines for Medical Practitioners. An Overview of the Canadian Consensus Document. Bruce M Carruthers, Marjorie van de Sande. 2005. http://ahmf.org/ME CFS Overview.pdf

2. Chronic Fatigue Syndrome / ME Turning Disability Toward Ability. Dr DP Lewis CFS Discovery Pty Ltd Melbourne 2003. http://www.cfsdiscovery.com.au/

3. Abnormal Impedance Cardiography Predicts Symptom Severity in Chronic Fatigue Syndrome. Arnold Peckerman; John J Lamance; Kristina A Dahl; Rahul Chemitiganti; Bushra Quereshi; Benjamin H Natelson. The American Journal of Medical Science 326(2):55-60, Aug 2003
http://www.cfids-cab.org/MESA/Peckerman.pdf

4. Chronic Fatigue Syndrome and Mitochondrial Dysfunction, Sarah Myhill; Norman E. Booth; John McLaren Howard Int J Clin Exp Med 2(1):1-16,2009 http://www.ijcem.com/files/IJCEM812001.pdf

5. Using Serial Cardiopulmonary Exercise Tests to Support a Diagnosis of Chronic Fatigue Syndrome, VanNess, J. Mark; Snell, Christopher R ; Stevens, Staci R; Bateman, Lucinda; Keller, Betsy A. FACSM. Journal: Medicine & Science in Sports & Exercise: Volume 38(5) Supplement May 2006 p S85 http://listserv.nodak.edu/cgi-bin/w...D1607816F6B67DE&Y=susannaa@dodo.com.au&P=2946

6. Chronic Fatigue Syndrome: Exercise Performance Related to Immune Dysfunction

Jo Nijs; Mira Meeus; Neil R. Mcgregor; Romain Meeusen; Guy De Schutter; Elke Van Hoof; Kenny De Meirleir Medicine and Science in Sports and Exercise

Published: 11/16/2005 http://www.medscape.com/viewarticle/516556

7. Demonstration of Delayed Recovery from Fatiguing Exercise in Chronic Fatigue Syndrome. Loma Paul; Leslie Wood; Wilhelmina MH Behan; William M Maclaren; European Journal of Neurology 1999 6:63-69

http://www.cfsrf.com/pdf/Paul1999.pdf

8. Does Graded Exercise Therapy Improve Post-Exertional Malaise in CFS? Susanna Agardy co-cure.org Archives 30 March 2005 http://listserv.nodak.edu/cgi-bin/w...E5D7C7F921BDA76&Y=susannaa@dodo.com.au&P=1616

9. Randomised controlled trial of patient education to encourage graded exercise in chronic fatigue syndrome. Pauline Powell, Richard P Bentall, Fred J Nye, Richard HT Edwards. BMJ 2001; 322: 387.

10. Randomised controlled trial of graded exercise in patients with the chronic fatigue syndrome. Kathy Y Fulcher, Peter D White. BMJ 1997; 314:1647-1652.

11. Randomised controlled trial of graded exercise in chronic fatigue syndrome. Karen E Wallman, Alan R Morton, Carmel Goodman, Robert Grove, Andrew M Guilfoyle. Med J Aust 2004; 180(9): 444-448.

12. Randomised, double-blind, placebo-controlled treatment trial of fluoxetine and graded exercise for chronic fatigue syndrome. AJ Wearden, RK Morriss, R Mullins, PL Strickland, DJ Pearson, L Appleby, IT Campbell and JA Morris. British Journal of Psychiatry (1998) 172, 485-490.

13. A review on cognitive behavorial therapy (CBT) and graded exercise therapy (GET) in myalgic encephalomyelitis (ME)/ chronic fatigue syndrome (CFS): CBT/GET is not only ineffective and not evidence-based, but also potentially harmful for many
patients with ME/CFS. Frank N.M. Twisk, Michael Maes. Journal: Neuroendocrinol Lett 2009; 30(3): 284–299 PMID: 19855350 NEL300309R02
http://node.nel.edu/?node_id=8918

14. Evidence that the Guidelines Development Group that Produced the NICE Guideline on CFS/ME (CG53) Failed to Filfill its Remit (particularly in relation to the potential dangers of graded exercise therapy) Margaret Williams 2008 (pp 19-32, effects of Graded Exercise Therapy) http://www.meactionuk.org.uk/FACTS_re_GET.pdf

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[Kati]

Thank you IslandFinn, very useful for my file against disability company, I also appreciate the list of references.

 

[gracenote]

great post

This is great. Thanks islandfinn. I couldn't get the link to open, though.

 

[flybro]

Great post

Thanks islandfinn

this is the best and I'm going to blog it and roll it out starting in the new year.

FanQ

 

[Andrew]

I like the article and I agree with your comments on how it could be better.

 

[Terri]

Great post

This is a very good article. I am going to take it to my doctor and also use it on my blog when I get it up and running.

Thanks Islandfinn!

Terri

 

[leelaplay]

hi all,

Glad you liked it too (+can see how it could be improved a titch - let me know if you think of other ways Andrew)

gracenote - I hope I've fixed the link to co-cure - those danged typos never stop

Kati and Terri - I agree that it could be helpful with insurance companies and doctors. If it does prove to be of help, could you let the rest of us know?

flybro - I didn't know you have a blog - checking it out will be one of my new year's gifts. Like the idea of this info getting out there. Feel we all to often are individually reinventing the wheel - that's my excuse for wanting to database all ME/CFS research and have nice lists like this ready on a resource page on the forum!

I'm wondering about doing a north american version of this, making it a bit more succinct, and adding some quotes from Staci Stevens at Pacific Fatigue Lab and reference to her podcast from the Calgary 09 conference - it's THE best I've ever heard on "exercise". I still haven't found any transcripts of it. Finding them or doing them myself is on the top of my list of 'things to do beyond life maintenance stuff' (which obviously includes this forum now)

 

[Andrew]

Glad you liked it too (+can see how it could be improved a titch - let me know if you think of other ways Andrew)

I'm getting sicker right now and I can't spend much time. But I think this could turn into an excellent document. Concepts I would like to see are:

From Bruce Campbell
1. Energy Budget. The idea with this is that you have so many energy units per day. You use some for self-care, others for doctor appts. and others for exercise, etc. The idea is that one needs to exercise within this context. Which means if you use up a lot of energy units on other things, you have to exercise less that day.

2. Schedule daily rests. Resting consists of lying down with eyes closed.

From Nancy Klimas.

Every period of exercise must be followed with an equal period of rest.


BTW, I described some exercises somewhere here that can be done lying down. But I don't remember where. Maybe I can find them later.

 

[leelaplay]

Hi Andrew. Sorry to hear that it's a getting sicker time. Thanks for spending some of that precious energy on adding your good ideas.

I'm slowing down these days, but have a sticky note by the computer to remind me that I want to work on this when there's a bit more energy.

BTW, I described some exercises somewhere here that can be done lying down. But I don't remember where. Maybe I can find them later.

Oh our brains!

Hope you feel better soon. More importantly, hope you manage to hang onto feeling good, no matter how sick you are.

 

[Andrew]

Hope you feel better soon. More importantly, hope you manage to hang onto feeling good, no matter how sick you are.

Doing a little better.

Anyway, the more I read the thing you posted the more I like it. I'd feel okay giving this to a doctor. What it is missing would be too much to cover in the summary format it presents.

BTW, here an energy management article that seems good. Let me know what you think.

Also, here are the exercises I was taught.

I can move around my place a little. But at one point I was in bed all the time. A therapist showed me how to exercise lying down. Basically, I am just lifting my leg, bending my leg, tensing my buttocks, lifting my hips, bending my ankles, moving my leg out to the side and back. Bending my arms, pushing my hands against each other, pulling arms apart while clasping hands. Putting palms up, and then palms down. Moving arms as if doing curls. When I learned these I was so weak I could only do 3 reps, and had to break this routine in half and do each half at a different time.

Now that I'm doing significantly better, I sometimes do these standing up. I also got 6 pound weights for arm exercise. I just do basic stuff that comes to mind. I do three reps, but not every day. I also lift my hands above my head (without weights) every day to keep shoulders flexible.

I'm trying to figure out what else I can do.

And btw, I realize that some people who don't "exercise" are actually doing much more than I am by simply going to work, shopping, etc. And they can't add anything. That's why I like the concept of total activity, which should also include mental activity, stress, etc.

 

[Andrew]

A couple more thoughts.

1. In another post someone questioned the term "post exertion malaise." I just remembered this and looked up "malaise" in an online medical dictionary. It says "A vague feeling of discomfort, one that cannot be pinned down but is often sensed as "just not right."

I can't comment for others, but this is how I feel at my best. It is how I feel when I've been resting a lot and everything is going as well as possible. It is at the opposite pole of how I feel with a post-exertion symptom flare.

I have a feeling this term is for healthy people who have mild flu symptoms after exertion. It is the wrong term for CFS.

So what are some better terms?

Hmmm. I wonder if there is a medical term for worsening of symptoms. Does anyone here know what that would be?

2. I don't know if you have been seeing the recent studies from Holland regarding graded exercise. They actually tried instituting the UK GET methods, and found that they just don't work.

We sometimes read that most studies found that GET works. But I wonder if that is really true. Maybe the true statement would be "Most UK studies find it works, and UK studies use the Oxford criteria which does not actually describe CFS or ME."

3. How about a true or false quiz. Here's the question. "A good exercise program for CFS consists of a nonaerobic plan that starts with very light exercise that increases gradually over time."

The correct answer is "false." A plan like this doesn't consider what other physical and mental stresses the person is experiencing. If a person is struggling to work part time, adding gradually increasing exercise could push him/her over the edge. If a person can barely get out of bed, one cannot assume that even a mild movement plan can be increased. A plan must always be considered in the context of other physical and mental stressors. And there will be times when exercise needs to be decreased or leveled off.

There is another thing wrong with this plan. It doesn't explain how to accomplish crash avoidance. This is like teaching someone to drive, without explaining when, where, and how to put on the brakes. Any compassionate guideline should explain this, not simply leave it to the patient to fumble around, experiencing crash after crash.