Copyright © by Jodi Bassett 2006 on www.ahummingbirdsguide.com
This version updated August 2007
The single biggest factor determining recovery and remission from Myalgic Encephalomyelitis (M.E. or ICD-CFS) at this point - is undoubtedly appropriate rest in the early and/or severe stages of the illness. Avoiding over-exertion really is the single greatest intervention there is for Myalgic Encephalomyelitis right now and as such its importance can not be overestimated.
If you are newly diagnosed, or still in the acute stages especially you must give yourself the best possible chance for recovery and REST appropriately. Improvements in symptoms and stability of the illness can also be positively affected at every stage of the illness by appropriate activity management or activity reduction. Learning to limit your activity to only as much as your body is capable of dealing with may well be the single most important factor in your M.E. improving over time.
It is vital that patients avoid physical over-exertion and are never encouraged to exercise (or be active) beyond their individual limits particularly in the early and acute stages of the illness, but also at any stage of the illness. There is nothing to ever be gained by people with M.E. pushing themselves beyond their limits physically as this can only cause unnecessary relapses. Permanent damage (eg. to the heart) and disease progression may also be caused and there have also been reports of sudden deaths in M.E. patients following exercise. Avoiding overexertion doesn't guarantee a quick recovery or any recovery at all, there are other factors at work too, but overdoing it physically is a sure way to ensure that you remain more severely ill and for longer than would otherwise have been the case. Remember that resting as much as you need to is not just 'doing nothing' when you have M.E. - it is an active and vital treatment process.
Of course for the very severely ill there will be no safe or symptom-free activity limit and concepts of pacing or of stopping activities when symptoms appear are useless unfortunately and indeed a sizeable proportion of the very severely ill may well be so severely affected in the first place BECAUSE of overexertion in the early stages of their illness - because they were not told how important it was to rest or were not allowed to rest adequately. This guide is aimed at those who are less severely affected (because the very severely affected do not have a 'safe' activity level).
What is Myalgic Encephalomyelitis?
What characterises M.E. every bit as much as the individual symptoms is the way in which people with M.E. respond to physical and cognitive activity, sensory input and orthostatic stress, and so on. The way the bodies of people with M.E. react to these activities/stimuli post-illness is unique in a number of ways. Along with a specific type of damage to the brain (the CNS) this characteristic is one of the defining features of the illness which must be present for a correct diagnosis of M.E. to be made. The main characteristics of the pattern of symptom exacerbations, relapses and disease progression (and so on) in M.E. include:
- People with M.E. are unable to maintain their pre-illness activity levels. This is an acute change; M.E. patients can only achieve 50%, or less, of their pre-illness activity levels post-M.E.
- People with M.E. are limited in how physically active they can be but they are also limited in similar way with; cognitive exertion, sensory input and orthostatic stress.
- When a person with M.E. is active beyond their individual (physical, cognitive, sensory or orthostatic) limits this causes a worsening of various neurological, cognitive, cardiac, cardiovascular, immunological, endocrinological, respiratory, hormonal, muscular, gastrointestinal and other symptoms.
- The level of physical activity, cognitive exertion, sensory input or orthostatic stress needed to cause a significant or severe worsening of symptoms varies from patient to patient, but is often trivial compared to a patient’s pre-illness tolerances and abilities.
- The severity of M.E. waxes and wanes throughout the hour/day/week and month.
- The worsening of the illness caused by overexertion often does not peak until 24 - 48 hours (or more) later.
- The effects of overexertion can accumulate over longer periods of time and lead to disease progression, or death.
- The activity limits of M.E. are not short term, a gradual (or sudden) increase in activity levels beyond a patient’s individual limits can only cause relapse, disease progression or death in patients with M.E.
- The symptoms of M.E. do not resolve with rest. The symptoms and disability of M.E. are not just caused by overexertion, there is also a base level of illness which can be quite severe even at rest.
- Repeated overexertion can harm your chances for future improvement in M.E. M.E. patients who are able to avoid overexertion have repeatedly been shown to have the most positive long-term prognosis.
- Not every M.E. sufferer has ‘safe’ activity limits within which they will not exacerbate their illness, this is not the case for the very severely affected.
This is not simply theory, but is based upon an enormous body of clinical information and mutually supportive research. Confirmation of this hypothesis is supported by electrical tests of muscle and brain function (including the subsequent development of PET and SPECT scans) and by biochemical and hormonal assays. M.E. is neither ‘mysterious’ nor ‘medically unexplained.
Research and articles on this topic
An abundance of research and articles support the importance of avoiding overexertion in Myalgic Encephalomyelitis. To read more articles see the full-length version of this text.
MYALGIC ENCEPHALOMYELITIS : A Baffling Syndrome With a Tragic Aftermath
. By A. Melvin Ramsay M.D., Hon Consultant Physician, Infectious Diseases Dept, Royal Free Hospital. [Published 1986]
The degree of physical incapacity varies greatly, but the [level of severity] is directly related to the length of time the patient persists in physical effort after its onset; put in another way, those patients who are given a period of enforced rest from the onset have the best prognosis. Those who are given complete rest from the onset do well and this was illustrated by the aforementioned three patients admitted to hospital in an unconscious state; all three recovered completely. Those whose circumstances make adequate rest periods impossible are at a distinct disadvantage, but no effort should be spared to give them the all-essential basis for successful treatment. Since the limitations which the disease imposes vary considerably from case to case, the responsibility for determining these rests upon the patient. Once these are ascertained the patient is advised to fashion a pattern of living that comes well within them.
Theres no smoke without fire! Some comments on the tendency to relapse in ME
by Dr Elizabeth Dowsett
WHAT IS A RELAPSE? It is an unexpected deterioration in the condition of a sick person after partial recovery. The commonest causes of such a reverse in ME appear to be mental and physical over exertion.
SEVERELY AFFECTED ME (MYALGIC ENCEPHALOMYELITIS) ANALYSIS REPORT ON QUESTIONNAIRE (Word document) ISSUED JANUARY 2004
Results of survey:
Graded exercise therapy: 95% found it unhelpful
Cognitive behavioural therapy: 93% found it unhelpful
Patient accounts of graded exercise therapy (GET)
GET is a specific type of exercise program often forced on M.E. patients due to studies which have shown benefit with it on ‘fatigued’ people who do NOT have M.E.. To read more patient accounts see: Section 6 of the CBT and GET database and the Case Studies section.
Ruth. ‘I have been severely affected by M.E. for the past 14 years, completely bed bound for about 10 of those years, and had between 5% and 10% of my former health for the other 4. When I read headlines saying that an exercise regime was the answer to my ill health I couldn't understand it, as every time I tried to push myself physically even in small incremental steps I would deteriorate significantly. The last time I was able to walk I managed to convince myself that I was heading for a full recovery, and so increased my activity regardless of whether I was able for it, the result of this is that I have been unable to get out of bed for the past 6 1/2 years.’
Name: Annette. ‘I have done 2 GE programs under supervision. They both left me far worse off than before for a long period. The symptoms got much worse (sore throat, swollen glands, sinus infections, weakness, fainting) grew progressively worse and I had to abandon the exercise. The first one was early on in my illness (ME as per Ramsay) and probably led to the illness becoming permanent.’
If you are newly diagnosed with Myalgic Encephalomyelitis, or still in the acute stages especially you must give yourself the best possible chance for recovery and REST appropriately.
