Why patients with severe M.E. are housebound and bedbound Knowledge of some of the basics of how M.E. affects the body and the limitations of each patient are vital if you provide care for someone with M.E. or even if you make comments or have any type of input into the way the disease is managed, in order to avoid additional unnecessary suffering and disability.
This paper provides a brief overview of this topic for friends and family members, and also for carers, doctors or hospital staff.
See the Downloads sectionbelow to download this paper in Word or PDF format. This paper is also including in the new Caring for the M.E. Patient book which also features a Foreword by Dr Byron Hyde.
Copyright © Jodi Bassett November 2008. This version updated March 2009. From www.hfme.org
Knowledge of some of the basics of how M.E. affects the body and the limitations of each patient are vital if you provide care for someone with M.E. This knowledge is also necessary even if you make comments or have any type of input into the way the disease is managed, in order to avoid additional unnecessary suffering and disability. This is so important with M.E. because inappropriate care, comments and advice or pressure for M.E. patients to do certain things (even if well intentioned) can have serious consequences for the patients in the short term and the long term, or even permanently. This paper provides a brief overview of this topic for friends and family members, and also for carers, doctors or hospital staff.
So why are some severely affected M.E. patients housebound?
This is a question that severe M.E. patients are sometimes asked. The short answer to this question is:
A. They are simply too ill and disabled to leave the house. This task is physically impossible for them due to the severity of their illness, or:
B. They are physically able to leave the house, but it would be unwise for them to do so. In the short term this type of overexertion causes even more severe suffering than is already experienced daily (and may already be at an unbearable level). Even worse, this extreme additional loss of quality of life and ability can and does persist for a long time afterward.
It is very common for severely affected patients to spend 2 months, 6 months, 12 months or even several YEARS or longer recovering from a hospital trip (etc.). For example, some patients still have not regained their previous very low-level of health 2 or 4 years after a trip to hospital. Some never do recover, and for some patients the overexertion is so severe as to be fatal.
Severe overexertion also ruins a patient’s chances for significant (or any) future recovery, and can cause permanent physical damage.
Severely affected M.E. patients may also sometimes be asked questions such as:
The answer to each of these questions is the same, it’s just a difference of degree. Some tasks are physically impossible for some sufferers, and others are possible but unwise. Sometimes tasks can be done in a controlled way, and limited as to frequency and/or duration. In other words, the activities need to be carefully ‘rationed.’
That is really all there is to it. A person with M.E. doesn’t do certain things they would like to do (or are desperate to do), because they are either too ill to do them, or because they would loose a big chunk of what little quality of life and ability to do things they have left for months or years or longer afterward, or lose any chance at significant recovery if they did them....or because they don’t want to be in agonising pain and then die because they pushed themselves to do something that their severely damaged bodies couldn’t cope with.
That is the short answer. If you’d like more detail on all of these points, and some more M.E.-specific medical information and treatment and management guidelines however, then please read on.
What is Myalgic Encephalomyelitis? How does it affect the body?
Myalgic Encephalomyelitis is a debilitating neurological (CNS) disease which has been recognised by the World Health Organisation since 1969 as a distinct organic neurological disorder with the code G.93.3. It can occur in both epidemic and sporadic forms and over 60 outbreaks of M.E. have been recorded worldwide since 1934.
M.E. is an acute onset neurological disease initiated by a virus (an enterovirus) with multi system involvement which is characterised by post encephalitic damage to the brain stem (hence the name ‘Myalgic Encephalomyelitis’). M.E. is similar in a number of significant ways to diseases such as multiple sclerosis (MS), Lupus and Polio. M.E. can be extremely disabling; at least 25% of M.E. sufferers are severely affected and are almost completely (or completely) housebound and/or bedbound. Children as young as five can get M.E., as well as adults of all ages. M.E. has a similar strike-rate to MS and is a (potentially fatal) chronic/lifelong illness.
M.E. is primarily neurological, but because the brain controls all vital bodily functions virtually every bodily system can be affected by M.E. Although M.E. is primarily neurological it is also known that the vascular and cardiac dysfunctions seen in M.E. are also the cause of many of the symptoms and much of the disability associated with M.E. – and that the well-documented mitochondrial abnormalities present in M.E. significantly contribute to both of these pathologies. There is also multi-system involvement of cardiac and skeletal muscle, liver, lymphoid and endocrine organs in M.E.
Thus Myalgic Encephalomyelitis symptoms are manifested by virtually all bodily systems including: cognitive, cardiac, cardiovascular, immunological, endocrinological, respiratory, hormonal, gastrointestinal and musculo-skeletal dysfunctions and damage. Myalgic Encephalomyelitis affects the brain, the heart, almost every bodily system and every cell of the body. One of the defining features of M.E. is an inability to maintain homeostasis.
All of this is not simply theory, but is based upon an enormous body of mutually supportive clinical information. These are well-documented, scientifically sound explanations for why patients are housebound or bedridden, profoundly intellectually impaired, unable to maintain an upright posture and so on (Chabursky et al. 1992 p. 20) (Hyde 2007, [Online]) (Hyde 2006, [Online]) (Hyde 2003, [Online]) (Dowsett 2001a, [Online]) (Dowsett 2000, [Online]) (Dowsett 1999a, 1999b, [Online]) (Hyde 1992 pp. x-xxi) (Hyde & Jain 1992 pp. 38 - 43) (Hyde et al. 1992, pp. 25-37) (Dowsett et al. 1990, pp. 285-291) (Ramsay 1986, [Online]) (Dowsett & Ramsay n.d., pp. 81-84) (Richardson n.d., pp. 85-92).
What all of this means in practice is that patients with M.E. have to be very careful with or limit:
The main characteristics of the pattern of symptom exacerbations, relapses and disease progression (and so on) in M.E. include:
A. People with M.E. are unable to maintain their pre-illness activity levels. This is an acute (sudden) change. M.E. patients can only achieve 50%, or less, of their pre-illness activity levels post-M.E.
B. 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.
C. 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.
D. 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.
E. The severity of M.E. waxes and wanes throughout the hour/day/week and month.
F. The worsening of the illness caused by overexertion often does not peak until 24 - 72 hours (or more) later.
G. The effects of overexertion can accumulate over longer periods of time and lead to disease progression, or death.
H. 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.
I. 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.
J. Repeated overexertion can harm the patient’s 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.
K. 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.
In short, if patients with M.E. exceed their individual physical, cognitive, orthostatic and other limits, they will experience some combination of the following:
It is also important to be aware that repeated or severe overexertion can also result in the death of the M.E. patient. (Death in M.E. is most often caused by heart failure or multiple organ failure.) (Bassett, 2008, [Online])
For these reasons, it is vitally important that patients are allowed to judge for themselves how much activity it is safe and wise for them to attempt. Patients are the best judges of their own limits, and patients’ judgements must not be over-ruled. Patients should never be advised, encouraged or forced to be more active than their severely damaged bodies can handle; these decisions cannot safely or ethically be made by any third party.
What are the problems for severe M.E. patients being out of their bed or home?
“How is the M.E. patient being overexerted and made more ill if they are transported somewhere while lying down?” or “ how can just a few minutes or hours out of bed possibly make the patient more ill long-term?” a healthy person might ask.
It is common for people dealing with M.E. patients to pay close attention to the fact that a patient with M.E. has to limit physical overexertion, but to not fully understand that excessive sensory input and cognitive exertion and other factors can make the patient just as ill as excess physical activity. These factors are also often much harder to minimise. For example:
So as you can see, merely protecting the patient from physical overexertion is not enough by itself to make an activity safe for a M.E. patient. It is more complicated than that unfortunately.
One of the main misconceptions is that while walking a few steps must of course require additional bodily resources and additional cardiac output, time spent thinking, looking, listening or experiencing other sensory stimuli does not. But this is not the case. Not only physical effort, but also cognitive effort, requires additional resources which an M.E. patient may not have.
The brain contains some 100 billion neurons connected to some 10,000 relay stations and this enormous electrical activity creates a massive need for energy and other bodily resources. The brain uses up to 25% of the entire body's demand for glucose, 25% of the blood pumped from the heart goes to the brain and the brain also needs 25% of the body's oxygen supply. (Blood supplies nutrients like glucose, protein, trace elements, and oxygen to the brain.) So of course, every extra second of ‘electrical activity’ – every thought, every feeling, every noise heard or sight seen – requires additional cardiac output, makes additional oxygen and glucose demands, and so on, in just the same way as does a physical activity such as walking; if not more so. So in addition to physical activity, the list of things that can cause similar severe relapse in M.E. patients also includes cognitive exertion, sensory input and orthostatic stress. Anything that makes the body work harder or have to adjust in some way, in effect (Dowsett n.d. d, [Online]).
Again, that is why hospital trips (or any travelling out of the house) should be an absolute last resort for patients with severe M.E. and should be avoided wherever possible. Requiring patients with severe M.E. to go to hospital (etc.) is like making a person with two freshly broken legs walk for 5 hours to get medical help. It’s as counter-productive and cruel as it is agonisingly painful.
People with severe M.E. are some of the most vulnerable members of society and they deserve and desperately need appropriate care; care given in the home as much as possible. It is unreasonable that these already very severely ill patients have to be made so much more severely ill to get the basic care they need, most of which could easily be administered at home at an immensely reduced physical cost to the patient.
Advice for carers
If there is a genuine need for a trip out of the house there are things that can and must be done to help minimise the harm caused. So what are the top 10 most obvious things that need to be considered by anyone providing care to a M.E. patient on a daily basis, whether at home, in transit or during a short trip to hospital?
1. Reduce exposure to light
2. Reduce exposure to noise
3. Reduce/eliminate all non-essential visitors
4. Do not encourage patients to be more physically active (or upright longer) than they can easily tolerate
5. Try to schedule demanding tasks for the patient's best time of day as much as is possible
6. Try to reduce the patient’s levels of cognitive exertion and sensory input
7. Be aware of any special dietary requirements
8. Be aware of the likelihood of negative drug reactions
9. Be aware of the need for extensive rest and problems with sleep
10. Be aware that these aforementioned relapses can be delayed, and that they can be very serious and prolonged
Each of these points is expanded upon in the text: Hospital or carer notes for M.E. Please see this text for more information. (This paper and Hospital or carer notes for M.E. can also be downloaded together.)
It’s a lot to take in all at once, but everything that you can do to reduce the relapse from a hospital stay – or even better, avoid a hospital stay etc. completely – will make a real difference and be much appreciated. Just do your honest best. There is a huge difference between a 2 month long relapse and a 6 month relapse and between symptoms worsening during this time to a 7/10 or 8/10 level rather than a 9/10 or 10/10 level; or between a relapse that merely lasts weeks or months, or is semi-permanent or permanent.
(M.E. patients appreciate what a hassle it is to accommodate the demands of M.E. only too well. M.E. is an acute onset disease. Those of us who have M.E. went from being normal and healthy one day to having to cope with all these limits and disabilities the next, or from one hour to the next even. M.E. patients get it that M.E. is very unforgiving, overwhelming and just a huge hassle to deal with on just about every level; we think so too. But this doesn’t change the reality, unfortunately.)
Some tasks are physically impossible for some M.E. sufferers, and others are possible but unwise. Sometimes difficult tasks can be done so long as it is in a controlled way; and strictly limited as to frequency and/or duration. Another way to say this is that some activities need to be very carefully ‘rationed.’ In addition, some tasks are only possible at the patient’s best time of day, or with a period of rest beforehand (lasting minutes, hours or days or longer) or can only be completed if the task is modified in some way, or with assistance from a carer.
Activities that would be trivial for healthy people – including being out of bed or leaving the house for brief periods – can have disastrous consequences for patients with severe M.E. Consequences can include extremely severe and prolonged relapses, severe additional disability and suffering, permanent bodily damage and death.
Again, it is vitally important that M.E. patients are allowed to judge for themselves how much activity it is safe and wise for them to attempt. Patients are the best judges of their own limits, and patients’ judgements must not be over-ruled. Patients should never be advised, encouraged or forced to be more active than their severely damaged bodies can handle; these decisions cannot safely or ethically be made by any third party.
If a patient says they cannot or should not do something: then family, friends, doctors, carers and hospital staff must listen.
Thank you for taking the time to read this paper.
1. Can severe M.E. patients really die just from being forced out of bed, or to leave the house etc.?
2. How important is appropriate rest in M.E.?
3. What does ‘rest’ mean exactly in this context?
4. What does 10/10 pain and suffering mean in this context?
5. What is Homeostasis?
6. Is Myalgic Encephalomyelitis a stable illness?
7. Why is M.E. not at all the same thing as ‘CFS’?
1. Can severe M.E. patients really die just from being forced out of bed, or to leave the house etc.?
Of course I cannot show you a double blind controlled study where 25 severe M.E. patients were taken out of the house, and 25 were left at home to rest and show you how many of those moved from home died and how many didn’t. This subject is a difficult one to research (even if anyone in government hadn’t sold us out to the ‘CFS’ insurance scam and wasn’t obsessed with avoiding funding all new genuine M.E. research) as it involves making patients very much more ill or killing them, which is obviously something no ethical and knowledgeable researcher would want any involvement with. However, we can look at the facts of M.E., research, the experience of moderately ill patients and M.E. fatalities and draw some conclusions.
First off, we know that M.E. can be fatal. Deaths from M.E. are well documented. For example, M.E. expert Dr. Elizabeth Dowsett states, ‘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]). Deaths from severe CNS abnormalities are also described, as well as deaths caused by multiple organ failure or pancreatic failure. The term Myalgic Encephalomyelitis itself was created in UK in 1956 after doctors saw evidence of these abnormalities during autopsy on brains of patients who had died from M.E.
M.E. expert Dr Byron Hyde explains, ‘I have some M.E. 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’ (Hyde 2003, [Online]). This physiological difficulty is exacerbated by physical and mental activity and orthostatic stress.
Dr. Paul Cheney explains that when M.E. patients stand up, they are on the edge of organ failure as their cardiac output has dropped to the extremely low level of 3.7 litres per minute, a 50% drop from the normal output of 7 litres per minute. Without exception, says Cheney, every M.E. patient ‘is in heart failure.’
Cardiac and vascular abnormalities have been documented from the earliest outbreaks of M.E. to the present day. Recent research shows that mitochondrial and other dysfunction 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 which leaves them very ill and disabled. If this problem is severe enough it can result in death (Cheney 2006, [video recording]).
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, 2008, [Online]).
Also documented in M.E. are severely reduced blood flow to the brain 72 hours post-exertion, blood pressure readings as low as 80/40 and pulses as high as 150 at rest or after a period of time being upright, and so on. It is also worth noting that these abnormalities found on testing of M.E. patients never involve the most severely affected patients, who are too ill to be subjected to such tests.
Research has also proven that how much physical and cognitive overexertion a person can tolerate without serious damage depends on the severity of their illness. For example, we know that moderately affected patients can die from exercise sessions. For example, there is the case of the UK MP Brynmor John who had M.E. and was advised to ‘exercise himself back to fitness’ and who as a result of complying with this advice collapsed and died coming out of the House of Commons gym. Then there is the case of Sophia Mirza, in the UK who died from M.E. after being forced into inappropriate and abusive psychiatric care. Sophia had severe M.E. and was of course not capable of any exercise. Nonetheless, she was inappropriately removed from her home and given inappropriate care. She was cruelly killed by being forced into what to most people would have been only very minor or trivial exertions
Also, consider the fact that trauma victims are sometimes stopped from being moved (to another better equipped hospital for example), due to the fact that they are in shock and in a fragile state due to severe blood loss. How is this different to what is happening with the severe M.E. patient who only has 50% or less of the expected circulating blood volume? It isn’t. (Also, the trauma victim at least has most of this blood loss replaced by blood transfusion as soon as possible, which of course does NOT happen for the M.E. patient who must put up with this extremely low circulating blood volume for many YEARS at a time!) It seems clear that those with severe illnesses or injuries can indeed be severely affected and are at serious risk by what would be only very minor bodily stresses to other patients. The same is true of severe M.E. patients.
It also seems clear that if those with only moderate M.E. can and do die from the illness, then those with far more severe pathology and severe disability are at increased risk. If patients exceed cardiac output by even 1%, they die. There are severe M.E. patients who are so ill and have such poor cardiac output that they must spend all day in a dark, quiet room, alone, unmoving and unthinking, and yet even this level of rest is not enough for their bodies to cope with normal bodily processes without difficulty. For these patients, even being at complete rest counts as ‘overexertion’ and is too great a burden for the body to manage. Clearly for these patients, a trip out of the house or a brief period upright could very easily constitute the fatal 1% worth of overexertion. This is just simple logic.
Although death is a real possibility with a trip out of the house or other overexertion, most often death will not occur. A relapse is a certainty, however, if someone with severe M.E. is overexerted. This should be taken just as seriously as the possibility of death; the suffering caused by a relapse in severe M.E. patients can seem crueller than death.
While it maybe seem unkind to compare the experience of severe M.E. to death, can you imagine what it is like to be so ill and disabled, to be in what feels like 10/10 pain much of the time, and then to suddenly have your pain and suffering levels DOUBLE just because of one day’s or one week’s ‘activity.’
Can you imagine what it’s like to lose years of sacrifice and discipline, and slow improvement hard-won through intensive rest, in just one day or one week? To have all your ridiculously hard work suddenly count for absolutely nothing? To not only lose the small gains you made, but to end up even worse off than before you started?
Can you imagine being so severely ill and disabled that you had to spend 22 hours a day or more in a completely silent dark room, trying hard not to even think or move or feel very much lest you become far more ill. Imagine that all you had to look forward to, to focus on and cling to in your worst moments, was watching an hour of TV, listening to some quiet music occasionally, a half hour talking quietly to friends and family – or your own children – or using the computer (lying down) or a few minutes spent outside in the garden or playing with a beloved cat or dog.
Can you imagine losing the ability to do ANY of these things anymore suddenly, and having no respite or distraction from the agony-filled dark quiet room at all? Can you imagine this situation lasting months or even years, never knowing if things will ever even get back to how they used to be before the relapse, as bad as that was, let alone better?
M.E. can be more severe and disabling than almost any other disease there is. For those of us with severe M.E., the price that we pay for ‘activity’ is extreme and prolonged. Severe M.E. (which can be very severe indeed) can truly be a living death.
2. How important is appropriate rest in M.E.?
Based on repeated studies of patient outcomes, M.E. patients who are given advice to rest have the best prognosis. As M.E. expert Dr Melvin Ramsay 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.’ According to Dr. Elizabeth Dowsett any M.E. patient can also be stopped from deteriorating further and at least stabilised (if not in time experiencing some level of improvement) through appropriate care and rest. For more information on this see: What is Myalgic Encephalomyelitis?
3. What does ‘rest’ mean exactly in this context?
Resting means completely different things at different severity levels of illness. For the mildly ill resting may mean watching TV or perhaps sitting in a chair reading a book or having a quiet night in with friends. For the severely ill, these activities are not at all restful and indeed would provoke severe relapses.
For the very severely ill, resting means lying down in a dark room, in silence and with no sensory input at all (such as TV or radio or light) and not moving at all physically or engaging in any type of cognitive activity. Clothing must also be comfortable and the room must be neither too warm nor too cold. For the very severely ill a better term would be ‘complete incapacitation,’ rather than ‘resting.’ The term ‘resting’ implies that the inactivity is optional and this is often not the case in the severely ill who are often ‘resting’ (i.e. incapacitated) because it is physically impossible for them to do anything else.
For moderately ill patients resting means something somewhere between the two extremes, and so on.
Of course for the very severely ill there will be no safe or symptom-free activity limit. Concepts of pacing or of keeping activity at a level which does not cause immediate or delayed symptoms are useless. 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 is extremely common in M.E. It is a tragedy and an absolute disgrace.
Note that I have never heard of anyone with M.E. who is too restrictive with their activity levels; the problem is always the opposite, if anything. It is human nature to want to do things and to want to live and experience life as much as possible. It is very difficult for the person with M.E. to be unable to do so many things and it requires enormous discipline to avoid overexertion. Severe M.E. restricts life to a degree that healthy people might find hard to imagine, but patients have learnt from bitter experience many times over the extreme negative consequences of overexertion. Patients are reminded of this every week if not every day as even with careful control, limits can be misjudged or tasks can take a greater toll than expected.
For most if not all patients it is much harder to rest adequately than it is to keep pushing yourself to do things even to the point of worsening the illness. It is often much easier to just keep doing things and suffer the dire consequences in the short- and long-term, rather than stand up to extreme pressure from friends, family and medical staff for these activities to be completed as they were before the patient’s illness, unfortunately.
Resting so endlessly for many years on end is much harder than you can imagine. (It has been commented many times that learning to walk again, or speak again after a stroke or accident would be so much easier than having to just rest endlessly and do almost nothing and to have no distraction from the extreme pain. People with M.E. would give anything to be able to work hard to improve their illness, and to be improving every day instead of staying the same or getting worse.)The problem of M.E. patients under-reporting or underestimating their ability levels just does not exist.
This is not about patients being as inactive as possible. Of course a person with moderate M.E. of course does not need to live with the same restrictions as does someone with severe M.E. The point here is just that patients must stay within their individual post-illness limits. No more and no less than that is necessary.
Increasing the activity levels of someone with M.E. beyond their individual limits can only ever be harmful. It really doesn’t matter if this is done gradually or all at once.
The evidence which shows that some ‘CFS’ patients are merely deconditioned and can be restored to health through graded exercise programs is based on patients who DO NOT have M.E. None of the various cardiac, cardiovascular, immunological, neurological, cognitive, muscular, and other abnormalities present in M.E. sufferers – which together cause the high level of disability associated with M.E. – can be explained by mere ‘deconditioning.’ Patients who improve with graded activity programs do not have M.E. It should go without saying that treatment of one disease cannot be determined by studying a completely different and unrelated (and mixed) patient group. Yet this essential medical and logical guideline is all too often ignored when it comes to M.E. unfortunately. In this case, money speaks louder than logic, science or ethics. Please don’t fall for this nonsense about ‘deconditioning’ or about ‘CFS’ supposedly being just another term for M.E. and so on. It has nothing to do with M.E. For more see: Smoke and Mirrors.
4. What does 10/10 pain and suffering mean in this context?
A few years ago in The M.E. Ability Scale I wrote that 10/10 pain meant that ‘being eaten alive by a tiger wouldn’t hurt more than this does.’ I got a lot of (short) positive feedback on that comment from other very severe M.E. patients, saying that it was no exaggeration and they could relate very well to this description. I have experienced this on about a dozen occasions, which are burned into my memory. It is indescribable how severe the level of suffering and pain can be, at their worst. However it must be said that the more common 8/10 level pain is unbearable too, especially when it is very prolonged. I would also like to point out that I have severe M.E., but I am far from being the most severely affected.
The pain and suffering of M.E. have a number of different ‘flavours.’ The experience can be made up of severe nausea, vertigo and disequilibrium, cold and hot fevers or feeling both very cold and very hot at the same time, feeling ‘poisoned’ and very ill, pain in the glands and throat, muscle pain, twitching and uncontrollable spasms, difficulty breathing and breathlessness, cardiac pain and pressure and dysfunction that feels like a heart attack, a feeling of having a heart attack in every organ (caused by lack of blood flow to these organs), sensations of pain and terrible pressure in the brain and behind the eyes, stroke-like or coma-like episodes, abdominal pain and pain/discomfort following meals, seizures and ‘sensory storms’ (while conscious) and, lastly, an inability to remain conscious for more than a few minutes, or hours at a time or for more than a few hours each day in total. Any one of these problems can cause severe suffering. What makes severe M.E. so terrible is that the patient is almost always dealing with a large number of these horrific problems all at once.
More than 60 different symptoms of M.E. have been officially documented. Symptoms include:
Sore throat, chills, sweats, low body temperature, low grade fever, lymphadenopathy, muscle weakness or paralysis, muscle pain, muscle twitches or spasms, gelling of the joints, hypoglycaemia, nausea, vomiting, vertigo, chest pain, cardiac arrhythmia, resting tachycardia, orthostatic tachycardia, orthostatic fainting or faintness, circulatory problems, opthalmoplegia, eye pain, photophobia, and other visual and neurological disturbances, hyperacusis, tinnitus, , gastrointestinal and digestive disturbances, allergies and sensitivities to many previously well-tolerated foods, drug sensitivities, stroke-like episodes, nystagmus, difficulty swallowing, paresthesias, polyneuropathy, myoclonus, temporal lobe and other types of seizures, an inability to maintain consciousness for more than short periods at a time, confusion, disorientation, spatial disorientation, disequilibrium, breathing difficulties, sleep disorders; sleep paralysis, fragmented sleep, difficulty initiating sleep, lack of deep-stage sleep and/or a disrupted circadian rhythm and neurocognitive dysfunction including cognitive, motor and perceptual disturbances (Bassett, 2008, [Online]).
Dr Cheney writes, ‘80% of cases are unable to work or attend school. We admit regularly to hospital with an inability to care for self’ (Hooper et al. 2001 [Online]). Research has shown that M.E. has been found to be more disabling than MS, heart disease, virtually all types of cancer, patients undergoing chemotherapy or haemodialysis. It is comparable to end-stage AIDS, i.e. to how ill and disabled an AIDS patient is 2 weeks before death. (Hooper & Marshall 2005a, [Online]). (See What is Myalgic Encephalomyelitis? for more information.) However, in M.E. this high level of suffering is not short term as it is for end-stage AIDS patients. The body has few limits on how bad pain and disability can be without actually killing the sufferer, and how long the sufferer can remain in this state. This high level of suffering can last uninterrupted for DECADES.
5. What is Homeostasis?
Homeostasis is the ability of a living organism to regulate its internal environment to maintain a stable, constant condition, by means of multiple dynamic equilibrium adjustments, controlled by interrelated self-regulation mechanisms. Homeostasis is one of the fundamental characteristics of living things. It is the maintenance of the internal environment within tolerable limits.
M.E. causes a loss of the ability of the CNS (the brain) to adequately receive, interpret, store and recover information which would enable it to control vital body functions. There is a loss of normal internal homeostasis; the individual can no longer function systemically within normal limits.
Metabolic problems at a cellular level also contribute to this inability to maintain homeostasis in M.E. M.E. expert Dr Byron Hyde explains, ‘In MRI spectography of arm muscle of M.E. patients, it has been shown that because of an abnormal build-up of normal metabolites, the muscle cell actually shuts down to prevent cell death.’ This is what is happening to the M.E. patient’s cell physiology in every muscle (including the heart) and in the brain as a result of physical and cognitive activity and/or overexertion; there is ‘cell field shutdown’ to prevent the death of the cell. See: Treating Myalgic Encephalomyelitis - Avoiding Overexertion for more information and for references.
6. Is Myalgic Encephalomyelitis a stable illness?
One can probably observe people with some illnesses carefully for an hour or so and collect a lot of good information about what they can and can’t do, how severe their illness is, and what their usual symptoms are from day to day, and so on. However M.E. is not one of those illnesses. M.E. is not a stable illness.
Observing the average M.E. sufferer for an hour – or even a week or more – will not give an accurate indication of their usual activity level because the severity of M.E. can wax and wane throughout the month, week, day and even hour. Also, people with M.E. can sometimes operate significantly above their actual illness level for short periods of time thanks to surges of adrenaline – albeit at the cost of severe and prolonged worsening of the illness afterward. Relapses and worsening of symptoms are also very often also significantly delayed (there may be both an acute AND a delayed reaction).
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.
Often a considerable rest period is needed before and after a task, which may be hours, days, weeks or months long. For example, someone may need 2 weeks rest before an outing, for example, and may then spend 3 weeks extremely ill afterwards recovering from it. Just observing them in the 2 hours they were ‘out and about and mobile’ is of course not at all representative of their usual ability levels.)
Most importantly, because the worsening of the illness caused by overexertion may not even begin until 48 or more hours afterwards (when most observers are long gone), it’s impossible to tell by seeing an M.E. patient engaged in an activity, whether that activity is so far beyond the patient’s limits that it will end up causing a severe or even permanent worsening of the illness (or ‘relapse’). To be blunt, the activity may even end up killing the patient. This isn’t common (the death rate is estimated at 3%), but deaths can and do occur. Thus, observers who see an M.E. patient engaged in an activity have no idea what the consequences of this activity may be.
7. Why is M.E. not at all the same thing as ‘CFS’?
The terminology is often used interchangeably, incorrectly and confusingly. However, the DEFINITIONS of M.E. and CFS are very different and distinct, and it is the definitions of each of these terms which are of primary importance. The distinction must be made between terminology and definitions.
Chronic Fatigue Syndrome is an artificial construct created in the US in 1988 for the benefit of various political and financial vested interest groups. It is a mere diagnosis of exclusion (or wastebasket diagnosis) based on the presence of gradual or acute onset fatigue lasting 6 months. If tests show serious abnormalities, a person no longer qualifies for the diagnosis, as ‘CFS’ is ‘medically unexplained.’ A diagnosis of ‘CFS’ does not mean that a person has any distinct disease (including M.E.). The patient population diagnosed with ‘CFS’ is made up of people with a vast array of unrelated illnesses, or with no detectable illness. According to the latest CDC estimates, 2.54% of the population qualify for a ‘CFS’ (mis)diagnosis. Every diagnosis of ‘CFS’ can only ever be a misdiagnosis.
Myalgic Encephalomyelitis is a systemic neurological disease initiated by a viral infection. M.E. is characterised by (scientifically measurable) damage to the brain, and particularly to the brain stem which results in dysfunctions and damage to almost all vital bodily systems and a loss of normal internal homeostasis. Substantial evidence indicates that M.E. is caused by an enterovirus. The onset of M.E. is always acute and M.E. can be diagnosed within just a few weeks. M.E. is an easily recognisable distinct organic neurological disease which can be verified by objective testing. If all tests are normal, then a diagnosis of M.E. cannot be correct.
M.E. can occur in both epidemic and sporadic forms and can be extremely disabling, or sometimes fatal. M.E. is a chronic/lifelong disease that has existed for centuries. It shares similarities with MS, Lupus and Polio. There are more than 60 different neurological, cognitive, cardiac, metabolic, immunological, and other M.E. symptoms. Fatigue is not a defining nor even essential symptom of M.E. People with M.E. would give anything to be only severely ‘fatigued’ instead of having M.E. Far fewer than 0.5% of the population has the distinct neurological disease known since 1956 as Myalgic Encephalomyelitis.
The only course of action that makes any sense is for patients with M.E. to be studied ONLY under the name Myalgic Encephalomyelitis – and for this term to be used ONLY to refer to a 100% M.E. patient group.
The problem is not that ‘CFS’ patients are being mistreated as psychiatric patients; some of those patients misdiagnosed with ‘CFS’ actually do have psychological illnesses. ‘CFS,’ as a wastebasket diagnosis, includes all sorts of fatiguing illnesses including psychiatric illnesses. ‘CFS’ is associated with psychiatric illness; for many patients this is inappropriate, but some patients misdiagnosed with ‘CFS’ actually do have psychological illnesses.
There is no such disease as ‘CFS’ – that is the entire issue. The vast majority of patients misdiagnosed with ‘CFS’ do not have M.E. The only way forward, for the benefit of society and every patient group involved, is that:
1. The bogus disease category of ‘CFS’ must be abandoned completely.
2. The name Myalgic Encephalomyelitis must be fully restored (to the exclusion of all others) and the World Health Organization classification of M.E. (as a distinct neurological disease) must be accepted and adhered to in all official documentations and government policy.
The bogus disease category of ‘CFS’ must be abandoned (along with the use of other vague and misleading umbrella terms such as ‘ME/CFS,’ ‘CFS/ME, ’ 'ME-CFS,’ ‘CFIDS,’ ‘Myalgic Encephalopathy' and others), for the benefit of all patient groups involved. Science, logic and ethics must prevail over mere financial and political concerns. For more information see: What is Myalgic Encephalomyelitis?, Testing for M.E., The Terminology Explained and Why the bogus disease category of ‘CFS’ must be abandoned.
Governments around the world are currently spending $0 a year on M.E. research. Considering the brutal severity of the illness, and the vast numbers of patients involved, ranging in age from two to adults, this is a worldwide disgrace. How much longer will the world be fooled by the paper-thin ‘CFS’ scam, which has been clearly proven to be merely financially motivated?’ The fiction of ‘CFS’ represents outright medical fraud, involving serious medical abuse and neglect of patients, on a truly massive scale.
All of the information concerning Myalgic Encephalomyelitis on this website is fully referenced and has been compiled using the highest quality resources available, produced by the world's leading M.E. experts.
More experienced and more knowledgeable M.E. experts than these – Dr Byron Hyde and Dr. Elizabeth Dowsett in particular – do not exist. Between Dr Byron Hyde and Dr. Elizabeth Dowsett, and their mentors the late Dr John Richardson and Dr Melvin Ramsay (respectively), these four doctors have been involved with M.E. research and M.E. patients for well over 100 years collectively, from the 1950s to the present day. Between them they have examined more than 15 000 individual (sporadic and epidemic) M.E. patients, as well as each authoring numerous studies and articles on M.E., and books (or chapters in books) on M.E. Again, more experienced, more knowledgeable and more credible M.E. experts than these simply do not exist.
This paper is merely intended to provide a brief summary of some of the most important facts of M.E. It has been created for the benefit of those people without the time, inclination or ability to read each of these far more detailed and lengthy references created by the world’s leading M.E. experts. The original documents used to create this paper are essential additional reading however for any physician (or anyone else) with a real interest in Myalgic Encephalomyelitis: Click here to read the reference list for this paper. For more information see the References page.
‘People in positions of power are misusing that power against sick people and are using it to further their own vested interests. No-one in authority is listening, at least not until they themselves or their own family join the ranks of the persecuted, when they too come up against a wall of utter indifference.’
Professor Malcolm Hooper 2003
‘Do not for one minute believe that CFS is simply another name for Myalgic Encephalomyelitis (M.E.). It is not. The CDC definition is not a disease process. It is (a) a partial mix of infectious mononucleosis /glandular fever, (b) a mix of some of the least important aspects of M.E. and (c) what amounts to a possibly unintended psychiatric slant to an epidemic and endemic disease process of major importance’
Dr Byron Hyde 2006
‘The term myalgic encephalomyelitis (means muscle pain, my-algic, with inflammation of the brain and spinal cord, encephalo-myel-itis, brain spinal cord inflammation) was first coined by Ramsay and Richardson and has been included by the World Health Organisation (WHO) in their International Classification of Diseases (ICD), since 1969. It cannot be emphasised too strongly that this recognition emerged from meticulous clinical observation and examination.’
Professor Malcolm Hooper 2006
‘M.E. is a systemic disease (initiated by a virus infection) with multi system involvement characterised by central nervous system dysfunction which causes a breakdown in bodily homoeostasis. It has an UNIQUE Neuro-hormonal profile.’
Dr Elizabeth Dowsett
‘Deaths are not anecdotal and are a matter of public record. Patients with Myalgic Encephalomyelitis are dying and [also] developing complications (known to be fatal) such as heart disease and cancer at considerably younger ages than the statistical norm. This is significant and needs to be looked into.’
‘M.E. appears to be in this same family of diseases as paralytic polio and MS. M.E. is less fulminant than MS but more generalized. M.E. is less fulminant but more generalized than poliomyelitis. This relationship of M.E.-like illness to poliomyelitis is not new and is of course the reason that Alexander Gilliam, in his analysis of the Los Angeles County General Hospital M.E. epidemic in 1934, called M.E. atypical poliomyelitis.’
Dr Byron Hyde
‘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.’
Dr Melvin Ramsay on Myalgic Encephalomyelitis
‘The vested interests of the Insurance companies and their advisers must be totally removed from all aspects of benefit assessments. There must be a proper recognition that these subverted processes have worked greatly to the disadvantage of people suffering from a major organic illness that requires essential support of which the easiest to provide is financial. The poverty and isolation to which many people have been reduced by ME is a scandal and obscenity.’
Professor Malcolm Hooper 2006
‘What all this amounts to is that we have lost any semblance indeed any pretence of pursuing scientific inquiry (into) what is true. This is almost classic in its near-phobic avoidance of considering anything that could possibly be construed as speaking the truth.’
Margaret Williams on Myalgic Encephalomyelitis
‘Never in the field of human illness have so many been betrayed by so few’
RiME Sept. 2007
‘Thirty years ago when a patient presented to a hospital clinic with unexplained fatigue, any medical school physician would search for an occult malignancy, cardiac or other organ disease, or chronic infection. The concept that there is an entity called chronic fatigue syndrome has totally altered that essential medical guideline. Patients are now being diagnosed with CFS as though it were a disease. It is not. It is a patchwork of symptoms that could mean anything.’
Dr Byron Hyde 2003
Copyright © Jodi Bassett, January 2009. This version updated May 2009. From www.hfme.org
For more information, and to read a fully-referenced version of this text compiled using information from the world’s leading M.E. experts, please see: What is M.E.? Extra extended version. Permission is given for this unedited document to be freely redistributed. Please redistribute this text widely.
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