PEM from ME/CFS Canadian COnsensus Overview
What a great idea Andrew - a reading list for doctors. I'd love to see what you have on it. I never got beyond the Canadian Consensus Overview. Speaking of which, this is what it has:
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome:
A Clinical Case Definition and Guidelines for Medical Practitioners
An Overview of the Canadian Consensus Document
http://www.mefmaction.net/documents/ME_Overview.pdf
pg iv Importance of a Clinical Definition
The Greek origin of syndrome is syn together, and -drome - a track for running. One must determine the tracks of travel and observe the travel of a patients syndrome components. Because research definitions define a static collection of symptom entities, they have ignored or downplayed the critical dynamic features of this syndrome, as lived by patients.
The normal fatigue/pain pattern directly related to felt causal action and adjusted by activity/rest rhythms is broken in ME/CFS. As a result there are cumulative physical and cognitive fatigue/pain and crashing patterns, which are criterial in this Clinical Definition. The objective postural cardiac output abnormalities correlate with the degree of reactive fatigue and overall severity of ME/CFS. These findings could supply an objective marker for fatigue severity and duration, and help explain why ME/CFS can be so disabling. It is important for the clinician to observe the dynamics of the whole cluster of symptoms in their interaction, additive effects, and the disruption to patients lives over longer periods of time.
Pg 2
Post-Exertional Malaise and/or Fatigue: There is an inappropriate loss of physical and
mental stamina, rapid muscular and cognitive fatigability, post exertional malaise and/or fatigue
and/or pain and a tendency for other associated symptoms within the patients cluster of
symptoms to worsen. There is a pathologically slow recovery period - usually 24 hours or longer.
Pg. 3 & 4 1.
Fatigue
Fatigue is an inappropriate label because the fatigue experienced in ME/CFS is not normal
fatigue whereby energy is promptly restored with rest. The pathological fatigue
experienced in ME/CFS may combine exhaustion, weakness, heaviness, general
malaise, lightheadedness, and sleepiness that can be overwhelmingly debilitating.
By definition, the patients activity level is reduced by approximately 50% or more. Some patients
are housebound or bedridden and dependent on others for their daily care.
ME/CFS is
actually more debilitating than most other medical problems in the world9 including
patients undergoing chemotherapy and HIV patients (until about two weeks before death).
Cognitive fatiguing may be evident when the patients responses become slower, less
coherent, and s/he experiences more difficulty in word and information retrieval. The
pathological components of fatigue should be identified in order to provide appropriate
treatment.
Orthostatic intolerance, the inability to tolerate sustained upright activity, may be
associated with the overwhelming exhaustion, weakness, and urgency to lie down experienced
in ME/CFS. Often there is
arousal fatigue due to poor sleep quality and sometimes quantity.
Oxygenation fatigue is caused by insufficient oxygen being delivered to the brain and tissues.
In
metabolic fatigue, the cells are unable to transform substrates of energy into useful
functions.
Muscle fatigue is common. Patients who also meet the criteria of FMS usually
experience structural fatigue.
2.
Post-Exertional Malaise and/or Fatigue
Physical or mental exertion often causes debilitating malaise and/or fatigue, generalized
pain, deterioration of cognitive functions, and worsening of other symptoms that may occur
immediately after activity or be delayed. Patients experience rapid muscle fatigue and
lack endurance. These symptoms are suggestive of a pathophysiology which involves
immune system activation, channelopathy with oxidative stress and nitric oxide related
toxicity10, and/or orthostatic intolerance.
Recovery time is inordinately long, usually a
day or longer, and exercise may trigger a relapse. The following chart indicates some of
the documented dysfunctional reactions to exercise that patients may exhibit11:
(sorry - don't know how to make thumbnail bigger - you may have to follow the doc link and then go to page 4)