13 February 2010

Post exertional malaise


This is a revised blog entry.  There was some ambiguity identified in the previous post, which I have aimed to address.  Thank-you to each of those people who assisted with this, who have chosen not to identify themselves.  I am most grateful for your support and assistance.

Post exertional malaise is a familiar to many individuals with ME/CFS, and for those who have had this disease for several years or longer, it is likely to be a facet of the disease which is very disabling.  Some of us have learned to live within the confines of this symptom of ME/CFS, however it does pose many unseen limitations to how an individual may participate in their activities of daily living (housework, for example) personal activities of daily living (personal care).

Malaise is the term used by the Canadian Consensus Document to describe the onset of exacerbated signs and symptoms of ME/CFS, including cognitive function deterioration, and increased pain and fatigue. The term malaise is described in most literature as a vague feeling of general unwellness.   Encyclopedia.com states that malaise is a 'medical term for a general condition of unease, discomfort, or weakness' (Retrieved 10 February 2010), and the Oxford Nurses Dictionary, (4th ed.), defines malaise as 'the general feeling of being unwell. The feeling may be accompanied by a feeling of physical discomfort, and may indicate the presence of disease' (McFerran, 1998).

Individuals with ME/CFS identify this 'malaise' as the onset of exacerbated signs and symptoms of the disease, following a period of physical or mental exertion. For individuals with ME/CFS, it is common for this feeling to follow active physical exertion, such as going for a walk, hanging out the washing, cooking a meal, etc. Post exertional malaise typically lasts 24 hours or more following an activity or exercise.

For the purposes of this post, I will be using the word activity, and delineating it from the word exercise.  I will use the word 'activity' to describe the engagement of the body or the mind in tasks associated with daily living, as opposed to 'exercise'; the engagement of physical training to develop fitness and improve health.  I will not be addressing exercise or aerobic training.

There are physical signs associated with the symptom of post exertional malaise, which can be demonstrated by comparing an individual with ME/CFS with a healthy individual after participating in physical activity. An individual without ME/CFS will often experience anti depressant effect as a result of physical activity. This is caused by the increase of oxygen-carrying blood to the whereas individuals with ME/CFS show a decrease in oxygen and blood to the brain, which contributes to the feeling of malaise (van de Sande, 2009).  Individuals with ME/CFS demonstrate hypo-profusion of blood through particular areas of the brain, which means a decreased blood flow through the brain tissue, which is further decreased as a result of physical activity (van de Sande, 2009). This is the opposite of the effect of physical activity on the brain tissue of an individual who does not have ME/CFS (van de Sande, 2009). Body temperature normally increases with physical activity, however individuals with ME/CFS demonstrate a decreased body temperature after exercise (van de Sande, 2009).  A table of this can be found on page four of the Canadian Consensus document.

A further effect of the decrease of blood circulation in the brain is the decrease of the effect of endorphins on how an individual feels after exercise.  Endorphins are the body’s natural analgesics, (pain killers), which contribute to a increased sense of wellbeing in individuals without ME/CFS, after participating in physical exertion.

Although on average individuals with ME/CFS have an elevated resting heart rate, they typically demonstrate a significantly reduced heart rate when they are participating in an activity at their maximum workload. Individuals with ME/CFS also demonstrate 'an inability to reach the age-predicted target heart rates (van de Sande, 2009). Van de Sande, (2009), refers to a study completed by De Becker, et al (2000) which demonstrated that the maximum oxygen uptake and maximum workload attained by individuals with ME/CFS was approximately half that of sedentary controls. This could be attributed to autonomic dysfunction and/or heart dysfunction, which means that it is advisable for individuals who have ME/CFS not to try to attain age-predicted heart rates(van de Sande, 2009).  Other dysfunctions which are common for individuals with ME/CFS to experience after physical activity include impaired cognitive function, orthostatic intolerance and gait disturbance (van de Sande, 2009).

A dysfunction found in individuals with ME/CFS is Mitochondrial Myopathy.  The National Institute of Neurological Disease and Stroke define mitochondrial myopathy as a neuromuscular disease ‘caused by damage to the mitochondria—small, energy-producing structures that serve as the cells' "power plants” (May 2007).  Dr Cheney stated that in ME/CFS there is so much injury to the mitochondria that CFS could be called a mitochondrial disease (Seiverling, 2001).  This does not mean that the individual does not have ME/CFS, but that mitochondrial dysfunction plays a role in the disease pathology.  There is a link at the bottom of this blog entry which contains further information on mitochondrial myopathy, as discuss by Dr Cheney.

The following discussion on management techniques, which in some areas are used as part of generalized Cognitive Behaviour Therapeutic approaches.  This blog aims to discuss these techniques in isolation from any CBT intervention, as techniques which need to be carried out with care and support from a well educated medical team.  Again, the management techniques of pacing and grading will be discussed with regard to ADL’s and PADL’s, and not with reference to aerobic exercise programs.  Please use this for information and education purposes only, and do not embark on any physical exertion program without medical advice and support.

For individuals with ME/CFS, the subject of physical exertion can be a very sensitive and difficult one to address.  This is due to the nature of ME/CFS, where the disease is an exertional one (Lapp, 2006). There are small management techniques which individuals with ME/CFS may implement with support from a medical team, that can be used to help achieve activities.  Needless to say, this requires much forethought and planning. 

One of these managing techniques is grading.  Grading is the SLOW building up of tolerance to a realistic activity which has a predefined end point from the outset.  This end point is different for each individual.  The endpoint at which grading an activity stops, is the point at which participating in an activity can occur without ill effect, or post exertional malaise.  For example, an individual with ME/CFS might begin vacuuming for one minute every two days and build up to five or six minutes every two days before having a rest period. 
It is important to note that this is not a treatment technique, and does not lead to remission of ME/CFS signs and symptoms. Over four weeks, Black, et al (2005) found that  individuals with ME/CFS were able to increase their activity level, however, studies fatigue, muscle pain, and overall mood did not improve with increased activity. Black, et al., (2005) established from this that there is a limit to activity/exertion tolerance.  This means that an individual with ME/CFS may build up from a period of one minute to a period of six minutes of vacuuming over four weeks.  At six minutes on a good day, the activity is managed whilst still feeling a sense of wellbeing and absence of complete relapse, however this may remain the threshold, and any subsequent activity without a substantial rest period would tip the balance.

A good measure for a starting point of activity participation, is the amount of activity an individual with ME/CFS is able to tolerate on a bad day.  For some individuals, the extent of this may be getting out of bed and going to the bathroom and returning to bed for a rest.

Pacing of activity is another management strategies, where an activity, say hanging out the washing, is broken up into manageable chunks. An example may be hanging out three towels (the heaviest items) and having a break (for some people five minutes, for some people thirty minutes). The next would be hanging up two or three pairs of jeans, break, sweaters, break, then the socks, break, and underwear (lightest of the washing), so that as the activity proceeds, less and less exertion is required as the fatigue and ‘malaise’ sets in.

In the absence of being able to participate in an activity, i.e., for individuals who are bed bound, some techniques which may be beneficial include active and passive stretching of joints through range of motion.  Active stretching is the participation in a stretching activity independently; passive stretching requires that the individual is relaxed while someone moves each joint through a range of motion.  Even rolling over in bed is a form of stretching. 

In summary, individuals with ME/CFS should not view activity or exercise as a means by which they will recover.  Exercise done without support from properly educated medical professionals can be dangerous.  Instead, physical movement should be seen as an opportunity to avoid muscle atrophy and further weakness.  This means, once again, individuals with ME/CFS are in a position where they may need to take on a role of education within their medical teams.  I have included some resources below to assist with this.

References:

Black, CD., O’Connor, PJ and McCully, KK. Increased daily physical activity and fatigue symptoms in chronic fatigue syndrome. Dynamic Medicine, 2005, 4, 3. Retrieved February 2010 from  http://www.dynamic-med.com/content/pdf/1476-5918-4-3.pdf

Hoh, D, 2002.,  Retrieved February 2010 Treatment at the Cheney Clinic. http://www.prohealth.com/me-cfs/library/showarticle.cfm?id=3278&t=CFIDS_FM


Lapp, C (2006)., The Treatment of Chronic Fatigue Syndrome and Fibromyalgia Retrieved February 2010 from http://www.prohealth.com/library/showarticle.cfm?id=2926&t=CFIDS_FM


4 comments:

  1. Emma-Kate, I think one of the key concept of your article is that exercise is not meant to be used for recovering from ME/CFS.While all PWME know that, I suspect that on the other hand, the disability companies take it as a mean to recover and getting us back to w rok. At least this is what happening in my case. Thanks for writing.

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  2. A very well written article, thanks for sending me the link!

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  3. I don't have ME/CFS as my CFS specialist said so as it is the only symptom and don't have any other symptoms meaning I DON'T have CFS.

    If I go for a 2 minute on the flat I end up in bed for the rest of the say, yet I can walk inside my house no trouble as I live in a big house. Really confusing, I don't actually no what is wrong with me?

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  4. I have Post Malaise Exertion but not CFS/ME really strange. If I go for a 20 minute walk I end up in bed for 3 weeks to recover in and out of bed during the day, horrible.

    I was told I don't have ME/CFS as a specialist said so as I don't have any other symptoms apart from Post Malaise Exertion. Really strange.

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