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An abundance of research and articles support the importance of avoiding overexertion in Myalgic Encephalomyelitis. A small collection of sample articles is reproduced below.
For more information on this topic see:
The effects of CBT and GET on patients with Myalgic Encephalomyelitis This paper looks at the physical effects of CBT (psychotherapy) and GET (exercise) on patients with M.E.
See the paper Smoke and Mirrors for information on why patients with M.E. are being treated based on theories (such as CBT and GET) motivated by financial and political considerations as opposed to the available medical evidence. This text forms the introduction to a 100 page + CBT and GET database. The database contains excerpts and links to literally hundreds of articles and research studies which expose the lack of scientific legitimacy (and the hidden financial and political motivations) underlying the 'behavioural' paradigm of M.E. and the use of CBT and GET on M.E. patients – as well as a large number of patient accounts of CBT and GET.
For more articles on this topic see: General Research and Articles, Cardiac and Cardiovascular Research, Exercise Research, Metabolic research, and Muscle Research, and Research and articles which expose the lack of scientific legitimacy (and the hidden financial and political motivations) underlying the 'behavioural' paradigm of M.E. and the use of CBT and GET (graded exercise therapy) on M.E. patients.
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.
Myalgic encephalomyelitis--a persistent enteroviral infection? Dowsett EG, Ramsay AM, McCartney RA, Bell EJ. Basildon Hospital, Essex, UK. 1990 [edited for brevity]
Myalgic encephalomyelitis is a common disability but frequently misinterpreted. Amongst 6,000 patients referred for general microbiological diagnosis between 1975 and 1987, 420 cases were recognized. This illness is distinguished from a variety of other post-viral states by an unique clinical and epidemiological pattern characteristic of enteroviral infection. Prompt recognition and advice to avoid over-exertion is mandatory.
The book: The Clinical and Scientific Basis of Myalgic Encephalomyelitis edited by Dr Byron Hyde M.D
Dr Byron Hyde MD, in his M.E. textbook, explains that it has been found that those patients with M.E. who returned to work soon after becoming ill or while they were still seriously or severely ill – instead of having an extended period of rest and recovery – are at risk of causing an abnormal increase in damage ‘to a heart muscle already vulnerable and under attack from an acute viral infection.’ He also writes that:
This is not just clinical supposition, there is a strong basic for this belief of work or exercise potentiated heart damage in the literature. It is well known that enteroviruses may cause chronic cardiac disease as well as major neurological injury. Kandolf states that "enteroviruses are capable of causing dilated cardiomyopathy of sudden onset or lead to a variety of common arrhythmias." Utilizing mouse models, Wilson and again Reyes demonstrated that Coxsackie infected [enterovirus infected] mice, forced to swim to the point of exhaustion during the acute phase of infection, developed chronic heart disease whereas Coxsackie infected mice who were allowed to rest during the acute phase, did not develop chronic heart disease.
M.E. represents a possibility of serious cardiac injury primarily in patients who exercise or maintain exhaustive work efforts during the onset of their illness. It is possible that some of these patients who die and other that develop major cardiac changes are never recognised as M.E.
Those who do not, or cannot, rest in the early stages of M.E. potentially create, says Dr Hyde, ‘a physical injury to the myocardium, cardiac pacemaker cells or their autonomic control,’
M.E. is an infectious neurological disease and represents a major attack on the central nervous system (CNS) by the chronic effects of a viral infection. A significant number of the world’s leading M.E. experts believe that M.E., like poliomyelitis, is caused by an enterovirus. Dr Hyde explain that enterovirus infections are able to cause:
- a chronic host infection
- major or no cardiac disease depending on the virulence of the subtype
- cardiac injury dependent upon the sex of the patient and of the level of physical activity of the patient during the acute or infectious stage
- cardiac disease depending upon the immunological variability of the host.
An enterovirus would also explain the; age variation, sex variation, obvious resistance of some family members to the infection and the effect of physical activity (particularly in the early stages of the illness) in creating more long-term/severe M.E. illness in the host.
Dr Hyde also writes that;
With both CNS and CVS disease, chronicity may be provoked by maintaining strenuous exercise and work levels during the acute and recovery stage of the viral illness. Early patient activation may represent serious cardiovascular danger to patients [with M.E.]. The strange concept of waiting 6 months to diagnose a classical case of M.E. is unnecessary and fraught with potential danger to the patient. Such a diagnostic delay may create legal consequences for the physician. Physicians who take an early aggressive approach in physically activating these acute stage patients may do so at both their and their patient’s peril.’
From 'The Myalgic Encephalomyelitis symptom list' on this site:
‘Only being able to achieve 50% or less of your pre-illness activity level immediately upon becoming ill is very common – if not universal – in Myalgic Encephalomyelitis. (Although a small percentage of sufferers may possibly be somewhat less severely affected at onset.) This is not a gradual change in ability levels which occurs over weeks, months or years; it is an acute change. The onset of M.E. is frequently very dramatic, M.E. patients can very often tell you not just the day that they became ill, but the exact hour they became ill.’
‘The types of symptoms produced in response to certain levels of physical activity, cognitive activity, sensory stimuli or orthostatic stress may or may not vary depending on the type (and severity) of the activity or stimuli involved. But very often the types of symptoms worsened or produced by overexertion are fairly similar regardless of which exertion or input was involved. Overexertion can sometimes cause just one or two symptoms to worsen (eg. cardiac problems) but often a large cluster of symptoms are worsened. The cluster of symptoms made worse by excessive exertion or stimulus is often very similar from patient to patient, as generally it is a worsening of the most common symptoms of the illness. Patients commonly experience a combination of the following symptoms:
Profound cognitive dysfunctions (and various other neurological disturbances), muscle weakness (or paralysis), burning eye pain or burning skin, subnormal temperature or low-grade fever, sore throat or painful lymph nodes (and/or other signs of inappropriate immune system activation), faintness, weakness or vertigo, loss of co-ordination, dyspnea, an explosion of sensory phenomena (low level seizure activity), cardiac and/or blood pressure disturbances, facial pallor and/or a slack facial expression, widespread severe pain, nausea or feeling as if ‘poisoned,’ feeling cold and shivering one minute and hot and sweating the next, anxiety or even terror (as an organic part of the attack itself rather than as a reaction to it) and hypoglycaemia. Often the patient will feel an urgent need to retreat from all homeostatic pressures. The types of symptoms triggered vary widely from patient to patient, but some combination of these is common. There may also be an accompanying exacerbation of other symptoms. These symptoms often combine to create an indescribable and overwhelming experience of terrible illness that is unique to M.E, and can be profoundly incapacitating. At its most severe, the patient feels as if they are about to die.’
‘Each of the symptoms caused or exacerbated by overexertion can be clearly articulated without difficulty whether they be; seizures, cardiac events, labile blood pressure, tachycardia, shortness of breath, muscle pain, muscle weakness or muscle paralysis, facial paralysis, black outs, flu-like symptoms, nausea, inability to speak or to understand speech, problems with memory, and so on. It makes no scientific or logical sense to subsume these very specific symptoms, and very specific and varied combinations of symptoms, under a vague and inaccurate label of mere ‘fatigue.’ To say that all of these very different and very specific – and in some cases very serious – symptoms can be accurately summarised as being a problem of mere ‘fatigue,’ ‘malaise’ or ‘exhaustion’ is absurd.’
‘A large number of illnesses cause significant fatigue or malaise after activity (for example post-mononucleosis or glandular fever fatigue syndromes, Lyme disease and Fibromyalgia and so on) but what is happening in M.E. is simply not the same; the symptomatology and pathology – and the effect of physical, cognitive and orthostatic overexertion on long-term prognosis – is very different in M.E.’
‘The severity of M.E. is not stable over the course of a day, or even from one hour (or even one minute) to the next: it also isn’t stable from one week or month to the next. This waxing and waning of the severity of the illness can be very unpredictable. The severity of M.E. also waxes and wanes from one minute/hour/day/week etc. due to the acute and delayed effects of overexertion.’
‘Because of the lack of stability in M.E. you simply cannot know a M.E. sufferers usual ability level or severity level unless you have observed them over a very long period of time, or actually asked the person detailed questions about what their average daily activity limits, abilities and symptoms are. Just observing someone with M.E. do a certain task should not be taken to mean; (a) that they can necessarily repeat the task anytime soon, (b) that they would have been able to do it at any other time of day, (c) that they can do the same task every hour, day or even every week, or month, or (d) that they wont be made very ill afterwards for a considerable period because they had to really push themselves (and make themselves ill) to do the task. Most importantly, because the worsening of the illness caused by overexertion very often does not even begin until 48 or more hour afterwards you also can’t tell by looking if a particular activity was so far beyond a M.E. patient’s individual limits that they will end up having made themselves severely or permanently more ill by completing the task.’
‘Another reason that short-term and superficial judgements of ability and disability levels in people with M.E. are ill-advised and often very misleading – and are in fact almost guaranteed to give a falsely more optimistic view of daily ability levels – is because the relapses caused by exertion very often do not appear until 48 or more hours afterward, when the average observer is long gone.’
‘Recent research shows that mitochondrial dysfunction (etc.) leads to diastolic dysfunction and reduced stroke volume/low cardiac output in M.E. – and that certain levels of orthostatic stress and physical and mental activity etc. exacerbate this cardiac insufficiency. Dr Cheney explained recently that because it takes more metabolic energy for the heart to relax and fill with blood than it does for it to squeeze and pump blood, the hearts of people with M.E. don’t fill with the proper amount of blood before they pump which is what causes the reduced cardiac output and many of the symptoms of M.E. (and much of the disability of M.E.) So the tachycardia – fast heart rate – often seen in M.E. in response to orthostatic stress and so on is actually compensating for low stroke volume to help increase cardiac output. The heart doesn’t fill with enough blood before each beat of the heart so it is forced to beat faster to try to make up some of the shortfall, but people with M.E. are still left with reduced cardiac output leaves them very ill and disabled. If this problem is severe enough it can also result in death. As one M.E. advocate explains: ‘Cardiac output is sometimes too low to meet the demands of movement, and any attempt to exert oneself beyond one's own capacity for cardiac output - that is when demand exceeds cardiac capacity - would indeed result in death. Studies on dogs have shown that when the demands of the body exceed cardiac output by even 1%, the organism dies. M.E. patients [must] reduce demand and reduce their exertion level to stay within the bounds of their low cardiac output to stay alive.’ (MESA)’
From 'Smoke and Mirrors' on this site:
What is the effect of graded exercise therapy (GET) on Myalgic Encephalomyelitis (M.E.) patients?
As (bad) luck would have it, graded exercise programs are probably the single most inappropriate treatment that a M.E. sufferer could be recommended to undertake. This is because one of the unique features of authentic M.E. is exercise intolerance – that patients worsen with even trivial levels of activity or exercise. Exercise or exertion intolerance is one of the many things which separates Myalgic Encephalomyelitis so distinctly from various post-viral fatigue states or other illnesses involving 'chronic fatigue.’ People with M.E. do not improve with exercise. They cannot; exercise intolerance is a large and essential part of what M.E. is. Veteran M.E. expert Dr Ramsay explained that this unique characteristic: ‘is virtually a sheet-anchor in the diagnosis of Myalgic Encephalomyelitis and without it a diagnosis should not be made.’ (1986, [Online]).
This essential feature of M.E. is characterised by a unique form of paralytic muscle weakness whereby muscles perform normally to begin with but after even a minor degree of physical effort; three, four or five days, or longer, elapse before full muscle power is restored. This affects all muscles including the heart and is very different from mere ‘fatigue.’ (Ramsay 1986, [Online]) (Hyde 2003, [Online]) (Hyde 1992 p. xi) (Hyde & Jain 1992 pp. 38 - 43) (Dowsett 2001, 2000, 1999.b, b [Online])
Doctors who have experience with M.E. (and can tell the difference between authentic M.E. and various unrelated fatigue states) and the leading M.E. experts all concur; exercise can have many harmful effects on patients both in the short- and long-term. The following comments which illustrate this point are provided by some of the world’s leading M.E. experts, all of whom have been specialising in M.E. for many years and each of whom has seen literally thousands of M.E. patients;
a. Dr Melvin Ramsay M.D., a UK doctor who specialised in M.E. for more than thirty years, from the Royal Free Hospital M.E. outbreak of 1955 until his death in 1990, and who is credited with having written some of the most accurate description of the illness to date, explains; ‘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. 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.’ (Ramsay 1986, [Online])
b. Dr. Elizabeth Dowsett, explains: ‘There is ample evidence that M.E. is primarily a neurological illness although non neurological complications affecting the liver, cardiac and skeletal muscle, endocrine and lymphoid tissues are also recognised. Apart from secondary infection, the commonest causes of relapse in this illness are physical or mental over exertion’ and ‘Prompt recognition and advice to avoid over-exertion is mandatory’ and ‘The prescription of increasing exercise can only be counter-productive.’ She also states that; ‘20% have progressive and frequently undiagnosed degeneration of cardiac muscle which has led to sudden death following exercise.’ (Dowsett & Ramsay et al. 1990) (Dowsett 2000, [Online]) (Dowsett a, [Online])
c. Dr Byron Hyde MD, explains that: ’I have some ME patients with a circulating red blood cell volume less than 50% of expected and a very large number with the range of 60% to 70%. What this test means is that blood is pooling somewhere in the body and that this blood is probably not available for the brain. When blood flow to the heart decreases sufficiently, the organism has an increased risk of death. Accordingly, the human body operates in part with pressoreceptors that protect and maintain heart blood supply. When blood flow decreases, pressoreceptors decrease blood flow to noncardiac organs and shunt blood to the heart to maintain life. This, of course, robs those areas of the body that are not essential for maintaining life and means the brain, muscles, and peripheral circulation are placed in physiological difficulty.’ This physiological difficulty is exacerbated by physical and mental activity and orthostatic stress. Dr Byron Hyde goes on to say that: ‘In MRI spectography of arm muscle of ME patients, it has been shown that because of an abnormal buildup of normal metabolites, the muscle cell actually shuts down to prevent cell death.’ Dr Hyde explains that this is what is happening to the true M.E. patient’s cell physiology in the brain, and in muscle as a result of certain levels of physical and mental activity; there is ‘cell field shutdown’ to prevent the death of the cell. (Hyde 2003, [Online])
d. Dr. Paul Cheney explains that when disabled M.E. patients stand up, they are on the edge of organ failure due to extremely low cardiac output as their Q drops to 3.7 litres per minute (a 50% drop from the normal of 7 litres per minute). Without exception, according to Cheney, every disabled M.E. patient ‘is in heart failure’ and the disability level is exactly proportional to the severity of their Q defect, without exception and with scientific precision. (Marshall & Williams 2005, [Online].) Findings which showed mitochondrial metabolic dysfunction similar to mitochondrial encephalomyopathy also led Dr Cheney to comment, ‘The most important thing about exercise is not to have [patients with ME] do aerobic exercise. I believe that even progressive aerobic exercise is counter-productive. If you have a defect in mitochondrial function and you push the mitochondria by exercise, you kill the DNA.’ (Williams 2004, [Online]).
As these comments show, the adverse response to physical activity in M.E. patients is not ‘medically unexplained.’ It is also worth noting that none of these abnormalities can be explained by ‘deconditioning’ – the supposed reason for the recommendation of therapies such as GET.
The Nightingale Definition of M.E. by Dr Byron Hyde MD.
Graduated Exercise and the Myalgic Encephalomyelitis Patient:
Possibly due to the fact that some Fibromyalgia patients can be improved by a gradual increase in exercise, or possibly due to the so called protestant ethic that all you have to do to get better is to take up your bed and walk, some physicians have extended the concept of passive or forceful increased exercise to Myalgic Encephalomyelitis patients. This is a common and potentially dangerous, even disastrous misconception.
If the M.E. patient conforms to the guidelines set out in this definition, the insurance company can only make the patient worse by instituting progressive aggressive forced physical and intellectual activity. M.E. is a variable but always, serious diffuse brain injury and permanent damage can be done to the M.E. patient by non-judicious pseudo-treatment.
Question marks over evidential basis of claims for psychosocial therapies ME Research UK, The Gateway, Perth; and the Department of Medicine, University of Dundee
In response to an article in the British Medical Journal, we reviewed trials of the use of psychosocial therapies in ME/CFS. The total number of available trials is small, numbers are relatively low (6/8 trials have n<40 in the active groups), and 2 of the 5 cognitive behavioural therapy (CBT) trials do not show an overall significant effect. No trial contains a "control" intervention adequate to determine specific "efficacy": in only 2 trials are the treatment arms compared with an "active", though not indistinguishable, intervention. A number of non-specific effects could have accounted for the positive results, and the fact that the drop-out rate in the active arm of one of the trials was 40% may point in this direction, as discussed in one of the reviews. Again, the heterogeneity of the trials, the potential effect of publication or funding bias for which there is some evidence, and professional doubts about the evidence base for some behavioural therapies themselves give grounds for caution.
Abbot NC, Newton DJ
Letter to the British Medical Journal 2002
Sharpe and Wilks' review [1] contains an "evidence-based summary" with the statement, "graded exercise and cognitive behavioural therapies are effective in treating chronic fatigue syndrome". However, rigorous examination of the literature indicates that this remark is not itself evidence-based, a serious criticism since evidence-based summaries in the BMJ carry weight and are widely quoted. Again, the heterogeneity of the trials, the potential effect of publication or funding bias for which there is some evidence [4], and professional doubts about the evidence base for some behavioural therapies themselves [5] give grounds for caution. Indeed, if a similar evidence base existed for, say, Shamanic healing - which has no professional proponents - it would arouse little clinical interest. Neither of the review groups has commended GET or CBT as particularly effective for chronic fatigue syndrome patients. Whiting et al. [2] state, "all conclusions about effectiveness should be considered together with the methodological inadequacies of the studies."
Physiological responses to incremental exercise in patients with chronic fatigue syndrome. Inbar O, Dlin R, Rotstein A, Whipp BJ.
‘As a group, the CFS patients demonstrated significantly lower cardiovascular as well as ventilatory values at peak exercise, compared with the control group.’ ‘These results could indicate either cardiac or peripheral insufficiency embedded in the pathology of CFS patients.’ ‘We conclude that indexes from cardiopulmonary exercise testing may be used as objective discriminatory indicators for evaluation of patients.’
Chronic fatigue syndrome: assessment of increased oxidative stress and altered muscle excitability in response to incremental exercise. Jammes Y, Steinberg JG, Mambrini O, Bregeon F, Delliaux S
‘ The response of CFS patients to incremental exercise associates a lengthened and accentuated oxidative stress together with marked alterations of the muscle membrane excitability. These two objective signs of muscle dysfunction are sufficient to explain muscle pain and postexertional malaise reported by our patients.’
Profits Before Patients? Eileen Marshall and Margaret Williams, 15th April 2005
The role of the Medical Research Council (MRC) is to fund projects on the basis of expertly written, peer-reviewed and approved proposals. Clearly, therefore, the role of peer-reviewers is of paramount importance as it is they who influence what research the MRC will fund. In the case of ME/ICD-CFS there are a limited number of peer-reviewers of psychiatric interventions of cognitive behavioural therapy and graded exercise apart from the PACE trial proponents themselves, so the favourable recommendation of the carefully selected peer-reviewers was not unexpected, nor was the decision to fund the trials on "CFS/ME" patients. The PACE trials involve compulsory aerobic exercise even though the deleterious effects of such exercise on those with ME/ICD-CFS are well documented in the medical literature.
Considering the rapidly increasing weight of available published data on organic pathology in ME/ICD-CFS (little of which is published in the UK medical literature), the MRC will inevitably have its hand forced eventually, as the time will come when such evidence can no longer continue to be ignored, but currently this seems to remain a forlorn hope. Surely this is a short-sighted policy, because it is well recognised that those who are correctly diagnosed and permitted to rest adequately in the initial stages are the ones who have hope of some recovery; moreover, if relevant research were to be instituted, it would lead to patients being investigated competently and treated correctly, thus offering the prospect of ME/ICD-CFS patients being able to return to an economically productive life.
National ME / FM Action Network's 1st Annual Symposium on Parallels Between Post-Polio Sequelae, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome . June 15, 2002
Dr. Dowsett believes that the polio vaccine made room for other polio-like viruses (from the family of viruses called enteroviruses) to take over. According to Dr. Dowsett's research and other work, these other viruses may even hit some parts of the brain harder than in polio. So, even if people with ME don't have (permanent) paralysis and get as physically weak as people who had polio, they may be even more impaired in other ways.
This has VERY IMPORTANT implications for assessment of disability and for treatment.
Important Treatment Information: Dr. Bruno says pacing, NOT cognitive behavioural therapy and NOT graded exercise, is the cornerstone of treatment for people with PPS and ME/CFS. The key message is that people with ME and PPS have demonstrated brain stem dysfunction. This explains a multitude of symptoms because the brain stem controls so many physical and mental processes. Dr. Dowsett supports this view. Dr Bruno is admirable in his determination to get over to people the effects of PPS, ME. and what can be done to allow people to help themselves improve their quality of life.
Politically-modified Research Eileen Marshall and Margaret WIlliams, 26th June 2005
‘If only someone with sufficient influence would question where "Wessely School" psychiatrists get their opinions from. If this were to happen, then the rampant metastatic spread of their unproven beliefs would soon stop because their opinions are not -- and cannot be -- based on biomedical evidence. But then, "policy-based evidence" is not required to be based on biomedical evidence and that, of course, is its value to Government.’
Time to put the exercise cure to rest? by Dr Elizabeth Dowsett
There is ample evidence that M.E. is primarily a neurological illness. It is classified as such under the WHO international classification of diseases (ICD 10, 1992) although non neurological complications affecting the liver, cardiac and skeletal muscle, endocrine and lymphoid tissues are also recognised. Apart from secondary infection, the commonest causes of relapse in this illness are physical or mental over exertion The prescription of increasing exercise is such a situation (or in the early stage of the illness when the patient desperately needs rest) can only be counter-productive.
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.
CONCERNS ABOUT A COMMERCIAL CONFLICT OF INTEREST UNDERLYING THE DWP HANDBOOK ENTRY ON MYALGIC ENCEPHALOMYELITIS / CHRONIC FATIGUE SYNDROME
(THE GIBSON PARLIAMENTARY INQUIRY) Professor Malcolm Hooper, Eileen Marshall and Margaret Williams, December 2005
The information in this document is relevant to the Gibson Inquiry, specifically the continued ignoring by the Department of Work and Pensions (DWP) and its commercial advisers of the compelling scientific evidence that myalgic encephalomyelitis / chronic fatigue syndrome is not a primary psychiatric disorder. If eligibility for certain benefits becomes contingent upon the intended implementation of compulsory psychiatric "rehabilitation" regimes, in cases of authentic ME it is likely to result in serious relapse that may be life-long (and may in some cases even result in death)
Mobility problems in ME by Dr Elizabeth Dowsett
The symptoms of this multi system disease are characterised by post encephalitic damage to the brain stem (1) (which contains major nerve centres controlling bodily homeostais) and through which many spinal nerve tracts connect with higher centres in the brain. Some individuals have, in addition, damage to skeletal and heart muscle. SPECIFIC MOBILITY PROBLEMS INCLUDE THE FOLLOWING:
NEUROLOGICAL PROBLEMS.
- Exhaustion, weakness and collapse following mental or physical exertion beyond the patents’ capacity. This arises from metabolic damage to the reticular activating system and to the hypothalamic control of the pituitary-adrenal axis (2). Whereas in healthy controls or in other illnesses (such as depression) there is an increased metabolic response to exertion, in ME this is diminished, leading to sudden collapse which requires several days or more for recovery. These complications (following even trivial exercise) are not recognised in short medical examinations for social benefits and no allowance is made for the delayed effects of exertion.
- Recent research indicates that these patients (3.) have high resting energy requirements which further diminish their resources.
- Problems with balance are common in ME due to involvement of spinal nerve tracts in the damaged brain stem.
MUSCULO-SKELETAL PROBLEMS
- Over 70% of ME patients suffer from significant bone and muscle pain (due to disordered sensory perception – a further consequence of brain stem damage which seriously affects their mobility).
- Other patients have (in addition) metabolic damage to muscle fibres resulting in abnormal early lactic acidosis as demonstrated by sub anaerobic exercise tests.
- 30% of patients with abnormal exercise tests have evidence of persistent infection in the muscle and of muscle infarcts (tender points on pressure affecting mainly limb and trunk muscles) and of
- jitter (due to incoordinated muscle fibre action) on slow leg raising for example, following damage to the neuromuscular junction. A rapid decline in thigh muscle tone can be demonstrated between 2 and 24 hours after exercise (3.)
CARDIOVASCULAR PROBLEMS
Patients with ME suffer a variety of symptoms arising from autonomic nervous system dysfunction (4.) including liability to a dangerous drop in blood pressure on standing for more than a few minutes, while some 20% have progressive and frequently undiagnosed degeneration of cardiac muscle which has led, in several cases, to sudden death following exercise.
CRITICAL CONSIDERATIONS by Margaret Williams
Since as long ago as 1996 it has been known that those with ME have abnormal lung function tests, with a significant reduction in all lung function parameters tested (see "Lung function test findings in patients with chronic fatigue syndrome" De Lorenzo et al. Australia and New Zealand Journal of Medicine 1996:26:4:563-564), and Jo Nijs from Belgium presented evidence at the Wisconsin international conference of underlying lung damage in ME through intracellular immune dysregulation with impairment of cardiopulmonary function. How can forced aerobic exercise regimes be guaranteed to be harmless where there is existing underlying lung damage?
There is also evidence that many people with ME may have a serious heart problem. In April 2003, Arnold Peckerman MD from New Jersey reported findings to the annual meeting of the American Physiological Society that demonstrated via a sophisticated test that after exercise, the heart of those with ME pumped less blood than it did at rest. Peckerman is on record as saying: "Basically we are talking about heart failure. Chronic fatigue syndrome is a progressive disease". Cardiologist Joseph Miller MD from Emory University agrees that these patients have serious heart problems: "A drop in (blood pumped by the heart) during exercise is actually a marker of significant coronary artery obstruction".
What are the risks of forcing such patients to undertake aerobic exercise regimes and "push themselves back to fitness"? The ME community will recall the case of Brynmor John MP who had ME but who was advised to exercise back to fitness; he dutifully tried to do so but collapsed and died coming out of the House of Commons gym.’
This excellent text from Verillo and Gellman gives a good starting point on how to start setting activity limits appropriate for your individual limits imposed by the illness. This is an excellent book and is very highly recommended – along with Dr Hyde’s M.E. textbook.
Taken from Verillo and Gellman's CFS: A Treatment Guide p. 267 - 285
Single-photon emission computed tomographic (SPECT) scans have shown that in patients with [ME] who exercise, brain blood volume is reduced 1 to 3 days after exercising. In patients who are acutely or seriously ill, this could have profoundly negative effects on immune and endocrine system regulation. In patients with [ME], exercise also lowers cortisol levels, which makes it more difficult for the body to control inflammation. In addition, it increases erratic breathing and leads to a rapid progression to anaerobic metabolism, which produces ammonia and lactic acid. These negative results are the opposite of what would normally be expected.
In short, a simple answer to the exercise question is, if you are severely or acutely ill, exercise can make matters worse-in some cases, much worse. The time to discuss an exercise program with your physician is only when the illness is stabilised and clear signs of recovery are noted..
Dr. Paul Cheney remarks that "patients with this disease must, for many of them for the first time, place limits on their workstyles and lifestyles. Proper limit-setting , which is always individualised, is the key to improvement in this syndrome" (CFIDS Chronicle, March 1991).This comment comes after observation of thousands of patients, many of whom denied their illness for extended periods before adjusting to its limitations. Dr. Cheney has seen not only the successes inherent in making these adjustments, but the failures that resulted from attempting to ignore them. But first, we must address the question of what is meant by "proper limit-setting."
To set proper limits, we must start with a basic awareness of how [ME] affects the body and the [brain]. [ME] affects the ability to maintain homeostasis; that is, once the illness is established, it alters the body’s ability to adjust to changes in the environment. For example, a person with [ME] climbs a set of stairs and feels like he or she has just climbed Mount Everest. The out-of-breath, depleted feeling is the result of sluggish heart rate, which, in [ME] does not respond in time to greater demands for oxygen required by exertion. As a result., not enough oxygen is available, and a person with [ME] feels winded after even minimal strain. This type of delayed reaction also results from temperature changes. People with [ME] often remark that when they become cold, "it takes forever to warm up." The same is true for heat. Both temperature extremes produce symptoms as the body attempts to adjust.
People with [ME] often comment that they are either "on" or "off." Once they stop, they can’t get going again; and once they start, they can’t stop. In the Clinical and Scientific Basis of ME/CFS, Dr. Byron Hyde, a well-known clinician and researcher of myalgic encephalomyelitis (ME) describes taking a walk with one of his patients. Dr. Hyde noticed when he stopped to look in a store window, his companion kept going. When asked why, Dr. Hyde’s companion replied that if he stopped, he would never get going again!
Once embarking on a project, a task, or a plan, it is difficult to stop. Even when performing easy activities such as taking a walk or balancing a chequebook, patients with [ME] often pass the point of endurance, and symptoms rapidly develop as a result.
Learning when we are "overdoing" it is how we define our own particular limits. This takes awareness, skill, and practice. Each person has limits that are defined by the severity of the illness. For a person who is bedbound, limits will be very different from those of someone who is able to work. Patients who are bedbound may find that extended telephone conversations, standing in the shower, or tackling stressful tasks such as filling out disability application forms produce exhaustion and a general exacerbation of symptoms. These patients may find that sitting in a plastic chair while showering, limiting conversations to 10 minutes, and resting before and after doing necessary paperwork [may help]. A patient who is mildly Ill and able to work may wish to cut back on work hours, take naps, and forego activities that place excessive or inflexible demands on the body (such as team sports or other activities that do not allow the participant to "listen": to the body).
A former airline pilot refers to limit setting as living in a box. " As long as I’m in the box, I do alright. If I cross the margins of this box, I don’t do very well" (CFIDS Chronicle, March 1991). Defining the limits of your own particular box is the key to developing good coping strategies. Whatever produces a symptom on any particular day or at any particular hour is where you would define your limits, not by any abstract assessment of what you think you should be doing or a comparison with former capacities.
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