exercise issues in ME/CFS, which I hope can be easily read by doctors=20
and patients. The pacing program and other statements are adapted=20
from Dr Lewis's book (Reference 2.) The article has appeared in=20
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=20
healthy people. While healthy people and even those with other=20
medical conditions find exercise invigorating and strengthening,=20
people with ME/CFS are unable to sustain activity/exercise for normal=20
periods and become exceptionally exhausted. Exhaustion may set in=20
immediately or it may be delayed by as much as one or two days. This=20
reaction is called payback or post-exertional malaise. It may be=20
triggered by relatively minor physical exertion such as a walk,=20
attending a family function, or mental effort and stress which could=20
have been easily tolerated before the onset of ME/CFS.
Post-exertional malaise is the most exceptional feature of ME/CFS.=20
Other common symptoms are: fatigue, sore throat, cognitive=20
dysfunction, sleep disorder, pain, inability to stand for any length=20
of time (Orthostatic Intolerance), sensitivities to food, drugs and=20
chemicals, and many others. Exercise may be followed by exhaustion=20
and additional pain, with tingling and twitching of muscles. Many=20
other symptoms may also get worse, even symptoms which are not=20
normally thought of as being the result of exercise (eg. cognitive=20
dysfunction). Recovery may take days or weeks, depending on the=20
extent of exertion. For this reason, levels of activity which are=20
excessive for the particular person cannot be repeated day after day=20
without risk of serious relapse.
Research has shown that symptoms of ME/CFS are related to impaired=20
immune, neurological and hormonal responses, infections,=20
mitochondrial dysfunction, channelopathy, oxidative stress and=20
more. There are heart, brain, muscle and other body system=20
irregularities. The aerobic pathways in people with ME/CFS are also=20
damaged. These make it impossible to maintain and recover from=20
exercise in normal fashion.
People with ME/CFS are affected to varying degrees, with varying=20
exercise capacity and with differing symptoms. Some are able to work,=20
some are capable of moderate activity such as shopping and social=20
activities, while others are housebound or bedridden. The condition=20
can fluctuate and people with ME/CFS can improve significantly, some=20
remain the same for many years, while others become worse.
Recommendations of Graded Exercise Therapy (GET) for ME/CFS are=20
controversial and are mostly based on the assumption that the illness=20
is the result of dysfunctional thought processes, abnormal illness=20
behaviour and physical deconditioning. Studies of GET do not ensure=20
that the participants included suffer from serious symptoms of ME/CFS=20
such as post-exertional malaise and mostly use loose, fatigue-based=20
criteria, allowing mixed groups of fatigued participants to be=20
included. Although overall improvement of fatigue is usually=20
reported, there is no evidence in any study that GET improves=20
post-exertional malaise and other symptoms of ME/CFS. Possible=20
adverse effects are ignored even when there are high rates of=20
dropping out and non-compliance. More seriously affected people=20
would be unable to participate in such studies, yet, the results are=20
generalised to them. Recommendations for GET ignore the risk of harm=20
indicated by other research and the frequent worsening of symptoms=20
following exercise reported by people with ME/CFS.
There are many medical issues to be addressed in ME/CFS and some=20
treatments may assist although there is no cure. A health=20
professional who is knowledgeable about the illness should be=20
consulted. Managing total activity levels is one essential step in=20
dealing with the illness. This includes self-care, housework,=20
employment, social activities and mental activity as all activity=20
makes demands on energy. The level of activity/exercise needs to be=20
carefully managed at all phases of the illness to avoid=20
deterioration. It needs to be accepted that many people with ME/CFS=20
may not regain their pre-illness capacity.
Pacing, or keeping within your boundaries, is designed to ensure that=20
you do not overdo activity/exercise and at the same time avoid=20
deconditioning. Pacing, as shown in the steps below, is recommended:
* Establish the total exercise/activity level you are capable of=20
without any payback or post-exertional malaise. A pedometer or=20
actimeter may be helpful in measuring the amount of physical activity=20
you have done on any day.
* To begin with, you need to do less, so that eventually you=20
increase the chance of doing more.
* Maintain the level of activity/exercise that you can manage=20
and stay on this plateau until you have a reserve of energy. The=20
correct level of activity/exercise is that which can be repeated the=20
next day without any payback.
* Do not move to the next level of activity/exercise until you=20
have the reserve which enables you to increase your activity level=20
without payback.
* Repeat the pattern of staying at the next plateau of=20
activity/exercise until you are able increase it without payback. You=20
may reach a limit which should not be exceeded. You may need to stay=20
at this level of activity.
* Balance physical and mental activity with rest, dividing=20
activity into short segments, alternated with rest. Rigid schedules=20
of activity/exercise should be avoided and activity should be=20
tailored to your level of ability.
* If you have overdone activity/exercise or suffer a relapse for=20
any reason, decrease your activity/exercise and rest more. Repeatedly=20
overdoing it may cause a severe and long-lasting relapse, bringing=20
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=20
already do this every day without payback. Aerobic exercise includes=20
running, swimming and cycling - any exercise which causes an=20
increased heart-rate;
Anaerobic exercise is recommended. This involves exercise such as=20
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 res=
t!
REFERENCES:
1. Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Clinical=20
Case Definition and Guidelines for Medical Practitioners. An Overview=20
of the Canadian Consensus Document. Bruce M Carruthers, Marjorie van=20
de Sande. 2005. http://ahmf.org/ME%20CFS%20Overview.pdf
2. Chronic Fatigue Syndrome / ME Turning Disability Toward Ability.=20
Dr DP Lewis CFS Discovery Pty Ltd Melbourne=20
2003. http://www.cfsdiscovery.com.au/
3. Abnormal Impedance Cardiography Predicts Symptom Severity in=20
Chronic Fatigue Syndrome. Arnold Peckerman; John J Lamance; Kristina=20
A Dahl; Rahul Chemitiganti; Bushra Quereshi; Benjamin H Natelson. The=20
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=20
Myhill; Norman E. Booth; John McLaren Howard Int J Clin Exp Med=20
2(1):1-16,2009 http://www.ijcem.com/files/IJCEM812001.pdf
5. Using Serial Cardiopulmonary Exercise Tests to Support a Diagnosis=20
of Chronic Fatigue Syndrome, VanNess, J. Mark; Snell, Christopher R=20
; Stevens, Staci R; Bateman, Lucinda; Keller, Betsy A. FACSM.=20
Journal: Medicine & Science in Sports & Exercise: Volume 38(5)=20
Supplement May 2006 p=20
S85=20
http://listserv.nodak.edu/cgi-bin/wa.exe?A2=3Dind0605d&L=3Dco-cure&T=3D0&=
F=3D&S=3D&X=3D559D1607816F6B67DE&Y=3Dsusannaa%40dodo.com.au&P=3D2946
6. Chronic Fatigue Syndrome: Exercise Performance Related to Immune Dysfu=
nction
Jo Nijs; Mira Meeus; Neil R. Mcgregor; Romain Meeusen; Guy De=20
Schutter; Elke Van Hoof; Kenny De Meirleir Medicine and Science in=20
Sports and Exercise=AE
Published: 11/16/2005 http://www.medscape.com/viewarticle/516556
7. Demonstration of Delayed Recovery from Fatiguing Exercise in=20
Chronic Fatigue Syndrome. Loma Paul; Leslie Wood; Wilhelmina MH=20
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=20
CFS? Susanna Agardy co-cure.org Archives 30 March 2005=20
http://listserv.nodak.edu/cgi-bin/wa.exe?A2=3Dind0503e&L=3Dco-cure&T=3D0&=
X=3D7ACE5D7C7F921BDA76&Y=3Dsusannaa%40dodo.com.au&P=3D1616
9. Randomised controlled trial of patient education to encourage=20
graded exercise in chronic fatigue syndrome. Pauline Powell, Richard=20
P Bentall, Fred J Nye, Richard HT Edwards. BMJ 2001; 322: 387.
10. Randomised controlled trial of graded exercise in patients with=20
the chronic fatigue syndrome. Kathy Y Fulcher, Peter D White. BMJ=20
1997; 314:1647-1652.
11. Randomised controlled trial of graded exercise in chronic=20
fatigue syndrome. Karen E Wallman, Alan R Morton, Carmel Goodman,=20
Robert Grove, Andrew M Guilfoyle. Med J Aust 2004; 180(9): 444-448.
12. Randomised, double-blind, placebo-controlled treatment trial of=20
fluoxetine and graded exercise for chronic fatigue syndrome. AJ=20
Wearden, RK Morriss, R Mullins, PL Strickland, DJ Pearson, L Appleby,=20
IT Campbell and JA Morris. British Journal of Psychiatry (1998) 172, 485=
-490.
13. A review on cognitive behavorial therapy (CBT) and graded=20
exercise therapy (GET) in myalgic encephalomyelitis (ME)/ chronic=20
fatigue syndrome (CFS): CBT/GET is not only ineffective and not=20
evidence-based, but also potentially harmful for many
patients with ME/CFS. Frank N.M. Twisk, Michael Maes.=20
Journal: Neuroendocrinol Lett 2009; 30(3): 284=96299 PMID:=20
19855350 NEL300309R02
http://node.nel.edu/?node_id=3D8918
14. Evidence that the Guidelines Development Group that Produced the=20
NICE Guideline on CFS/ME (CG53) Failed to Filfill its=20
Remit (particularly in relation to the potential dangers of graded=20
exercise therapy) Margaret Williams 2008 (pp 19-32, effects of=20
Graded Exercise Therapy) http://www.meactionuk.org.uk/FACTS_re_GET.pdf
=20
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