Assisting the M.E. patient in managing relapses and adrenaline surges M.E. patients have strict limits on how active they can be. If these limits are breached, symptoms worsen immediately and there is also a further deterioration 24 - 48 hours later, as well as the potential for repeated or severe overexertion to prevent any type of recovery, or cause disease progression or even death.
This paper explains how carers, doctors, and also friends and family members and partners of M.E. patients, can help patients to avoid overexertion and so have their best possible long-term health outcome. It also describes the characteristics and signs of adrenaline surges and relapses in M.E. for the benefit of these individuals, as well as for newly ill M.E. patients themselves.
This paper is designed to be read together with the more detailed Hospital or carer notes for M.E. paper.
A one-page summary of the text is also included on this page plus links to several short HFME videos on this topic.
See the Downloads section below to download this paper in Word or PDF format.
This paper is also including in the new HFME book Caring for the M.E. Patient.
Copyright © Jodi Bassett November 2010. Updated March 2012. From www.hfme.org
M.E. patients have strict limits on how active they can be. If these limits are breached, symptoms worsen immediately and there is also a further deterioration 24 - 48 hours later, as well as the very real potential for repeated or severe overexertion to prevent significant recovery, cause disease progression or even death.
It is very important that M.E. patients stay within their limits. Unfortunately, M.E. patients may find staying within these limits all of the time very difficult for a number of reasons.
This paper explains how carers, doctors, and also friends, family members and partners of M.E. patients, can help patients to avoid overexertion and so have their best possible long-term health outcome. It also describes the characteristics and signs of adrenaline surges and relapses in M.E. for the benefit of these individuals, as well as for newly ill M.E. patients themselves.
This paper is designed to be read together with the more detailed Hospital or carer notes for M.E. paper.
What is an adrenaline surge and how does this affect M.E. patients?
People with M.E. can sometimes operate significantly above their actual illness level for certain periods of time thanks to surges of adrenaline - albeit at the cost of severe and prolonged worsening of the illness afterward.
Adrenaline is often referred to as the 'fight or flight' hormone as it kicks into action in situations of potential danger. However, adrenaline also kicks in when the body is in physiological difficulty, which is very often what is happening to severe M.E. sufferers. Adrenaline surges make the heart pump faster and raise the blood pressure, forcing blood around the body with greater force to supply the muscles with more oxygen, so that they can make a greater effort. Surges of adrenaline increase the metabolism. They also relax and dilate the airways so that more oxygen than usual can be taken in. Adrenaline surges can also decrease the amount of pain felt. As a result of all of these factors, adrenaline surges - while they last - have the ability to increase physical speed, strength and other physical abilities.
Unfortunately, when these bursts of adrenaline wear off - as they must - people with M.E. are left far more ill as a result for many days, weeks, months or even years of overexertion. People with M.E. are harmed by adrenaline surges, both by the physiological stress to the body of the changes caused by adrenaline, and by the extra activity which adrenaline enables, which may be far beyond the body's normal limits so that such activity causes damage. For every short term 'gain' there is a far greater loss overall.
Surges of adrenaline can last hours, days, weeks or even months at a time.
These adrenaline surges are a bit like credit cards. They allow patients to do things that they could never otherwise do, or 'afford.' But the interest rate is extortionate, sky high, a killer. As Clytie, a very ill M.E. patient, explains:
i try to xplain this one in terms of money
ok, yoiu could buy a ferrari, coulnd't you?
no, i don't have the money
oh, but you could borrow lots of money, sell your house, talke up dealing drugs, gamble, and in the end you'd have your ferrari
maybe for a day or so, before the l,oan sharks shoot your kneecaps off, and the gangs blackmail you, and you have to find a way to rerpay all that money... could take you a lifetime
<rather frightened look>
yeah. yioyu get the point
M.E. expert Dr Melvin Ramsay explains;
The degree of physical incapacity varies greatly, but 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.
Why do M.E. patients sometimes overexert themselves, considering the severe consequences?
There are many reasons why this occurs, including the following:
Other reasons include:
What signs may indicate a relapse or an adrenaline surge?
Signs that a M.E. patient is overexerting and/or running on adrenaline may include the following:
Other things to be aware of:
What can you do to help?
How should you use this information?
This paper largely focuses on patients who are at the severe end of the moderate continuum to severely affected patients who are almost entirely bedbound. It will have to be adjusted somewhat for patients who are more moderately affected, or extremely severely affected.
How much assistance and guidance you give a M.E. patient to help them minimise relapses depends on several factors. These include how close you are to the patient, how receptive they are to input from you, how ill the patient is and how well they are managing their symptoms and relapses themselves.
M.E. patients understand their own limits very, very well almost all of the time. All they may need from you is the occasional verbal reminder to lie down or to rest.
Perhaps in most cases, just the fact that you have a desire to help and have read this paper and that you both have a solid understanding of the challenges they face and the nature of M.E. relapses will be enough. Knowledge is power.
It may seem obvious that M.E. patients would always do what is best for their long-term outcome, but this is not always the case. M.E. is a very difficult disease to manage. M.E. patients are very often sick to death of all the resting, carefulness and explaining required of them and so anything that you can do to help is very welcome.
Thank you for taking the time to read this paper.
For more information on adrenaline surges in M.E., and the different order in which certain bodily systems may be affected by M.E. (and by overexertion), see the Dr Cheney section inThe effects of CBT and GET on patients with Myalgic Encephalomyelitis orTreating Myalgic Encephalomyelitis - Avoiding Overexertion. See also Hospital or carer notes for M.E. and Why patients with severe M.E. are housebound and bedbound.
For more information about the medical and political facts of M.E. see:What is Myalgic Encephalomyelitis? Extra extended version and Who benefits from 'CFS' and 'ME/CFS'?
If you know someone with M.E. and want to know how to deal with it, and what you can do to help, then please read So you know someone with M.E.?
M.E. patients and those involved in determining treatment for M.E. patients may wish to look at the Health, Healing & Hummingbirds website which discusses treatment for M.E. generally, and also treatments which may assist normal adrenal function (such as extra B complex and vitamin B5, high-dose vitamin C, vitamin A, unrefined sea salt and ashwagandha).
All M.E. patients need to have their cortisol levels checked regularly. Low cortisol levels are well documented in M.E. In some cases testing may indicate very low cortisol levels and a prescription for low dose prednisone may be required. See Testing for M.E. for more information.
To read a list of all the articles on this site suitable for different groups such as M.E. patients, carers, friends and family, the 'CFS' misdiagnosed, doctors or severe M.E. patients and so on, see the Information Guides page.
It is very important that M.E. patients stay within their limits in order to prevent relapse and disease progression and so that chances for significant recovery are not destroyed. This paper explains how carers and loved ones of M.E. patients can help patients to avoid overexertion and so have their best possible long-term health outcome.
People with M.E. can sometimes operate significantly above their actual illness level for certain periods of time thanks to surges of adrenaline released when the body is put in physiological difficulty – albeit at the cost of severe and prolonged worsening of the illness afterward. These adrenaline surges are a bit like credit cards. They allow patients to do things that they could never otherwise do, or ‘afford.’ But the interest rate is extortionate.
Signs that a M.E. patient is overexerting or running on adrenaline, may include the following:
· Very fast, loud and continuous talking is a sure sign of an adrenaline burst. The patient may also sit up or stand for longer than usual (without realising they are doing so) or get ‘hyper’ and fired up to undertake tasks that they would usually be too ill to do. Sleeping and resting is very difficult as the patient feels ‘wired’ and very ‘unfatigued.’
· A lack of facial expression and ‘slack’ facial muscles and/or extreme facial pallor.
· A burning sensation in the eyes and/or an inability to tolerate visual stimulus and to keep the eyes open.
· Excessive water drinking (to try and boost blood volume) and excessive hunger and a desire for sugar- or carbohydrate –rich foods. Even after eating, the patient may still feel as if they have very low blood sugar and may need to eat far more often than usual.
· Sweating or shortness of breath after minor exertion or a sudden loss of the ability to walk.
· Visible shaking of the arms or legs or twitching facial muscles.
· Paralysis and weakness in the muscles or an inability to move, speak or understand speech.
· Very distinctly pink, purple or blue feet or legs, with white blotches, after standing or sitting for too long.
· Patients may complain of a severe headache or feeling of pain or pressure at the base of the skull. This may also be accompanied by pain behind one or both eyes or ears, or blackouts.
· Sudden onset ringing in the ears or loss of hearing or sore throat and painful glands in the neck.
· During and after overexertion, a patient’s pulse will very often become much faster (150 bpm or more), their blood pressure will become lower and their temperature may rise and they may feel very hot.
When a patient declares that they are improving and suddenly able to do tasks again which they have not been able to do for many months or years – and this occurs right after a very big task has been completed such as a house move or a very taxing trip to the doctor, it is almost certainly an adrenaline surge and not a real improvement. Improvements just do not occur after overexertion in M.E. this way. The big task was well beyond their limits and so the body has released a surge of adrenaline just to cope. Unfortunately, this type of lower-level but prolonged adrenaline surge will often be less easily recognized for what it is by the patient.
Tasks done using adrenaline surges come at a very high cost long-term and so must be strongly discouraged and absolutely never encouraged. You might gently remind the patient to lie down and rest if they sit up for much longer than usual, or are talking very fast and far more than usual, and so on. Do not instigate conversations with a patient when they are trying hard to come down off an adrenaline surge as this can undo hours of resting. If possible, make a set time to talk to the patient so that they do not have to be in ‘on’ and potentially ready to talk for hours at a time as this is almost as taxing as actually talking for many patients.
The only way to stop an adrenaline surge is to make sure that the body is no longer placed in physiological difficulty. This often means 3 days or more of absolute rest. While some of the effects of overexertion are immediate there are also secondary relapses that are delayed by 24 – 72 hours. Ideally, a patient will live long-term only completing tasks which can be done daily or every second or third day without causing relapse.
In most cases, just the fact that you have a solid understanding of the challenges patients face, understand the nature of M.E. relapses, and know how to help to not make things harder, will be helpful enough. Thank you for taking the time to read this paper. Please see the full-length version for more information.
The foundations of the pathology and symptomatology described in this text are well documented. For referenced information on the importance of avoiding overexertion in M.E., cardiac insufficiency in M.E., deaths in M.E. patients caused by overexertion, circulating blood volume being reduced to 50% or less and very low blood pressure readings in M.E., severely reduced cortisol levels in M.E. and the delayed effects of overexertion in M.E. etc. please see: What is M.E.? Extra extended version,Testing for M.E. and The effects of CBT and GET on patients with M.E.
What is not as well documented, however, is the exact nature of the relapses and adrenaline surges in M.E. The details on adrenaline surges included in this paper have been taken largely from hundreds of patient accounts shared with me both privately and in various online groups over the last 10 years or so, as well as my own experiences as a long-term M.E. patient. The feedback I have had so far from M.E. patients that have read this paper has been overwhelming and very positive. It has probably gotten the most positive feedback of almost any paper I have written, and the most responses as well. Further comments and suggestions from knowledgeable patients or doctors are always welcome.
Before reading any of the above links to research/advocacy information, please be aware of the following facts:
1. Myalgic Encephalomyelitis (M.E.) and 'Chronic Fatigue Syndrome'(CFS) are not synonymous terms. The overwhelming majority of research on 'CFS' or 'CFIDS' or 'ME/CFS' or 'CFS/ME' or 'ICD-CFS' does not involve M.E. patients and is not relevant in any way to M.E. patients. If the M.E. community was to reject all 'CFS' labelled research as 'only relating to 'CFS' patients' (including research which describes those abnormalities/characteristics unique to M.E. patients), however, this would seem to support the myth that 'CFS' is just a 'watered down' definition of M.E. and that M.E. and 'CFS' are virtually the same thing and share many characteristics.
A very small number of 'CFS' studies/articles and books refer in part to people with M.E., but it may not always be clear which parts refer to M.E. The A warning on 'CFS' and 'ME/CFS' research and advocacy paper is recommended reading and includes a checklist to help readers assess the relevance of individual 'CFS' studies (etc.) to M.E. (if any) and explains some of the problems with this heterogeneous and skewed research.
In future, it is essential that M.E. research again be conducted using only M.E. defined patients and using only the term M.E. The bogus, financially-motivated disease category of 'CFS' must be abandoned.
The research referred to on this website varies considerably in quality. Some is of a high scientific standard and relates wholly to M.E. and uses the correct terminology;. Other studies are included which may only have partial or minor possible relevance to M.E., use unscientific terms/concepts such as 'CFS,' 'ME/CFS,' 'CFS/ME,' 'CFIDS' or Myalgic 'Encephalopathy' and also include a significant amount of misinformation. Before reading this research it is also essential that the reader be aware of the most commonly used 'CFS' propaganda, as explained inA warning on 'CFS' and 'ME/CFS' research and advocacy and in more detail in Putting Research and Articles on M.E. into Context.
Thank you to Caroline G. for editing this paper. Thank you to Victoria for suggesting the topic of this paper. Thank you to Victoria, Frir, Clytie and everyone else who contributed to this paper.
i feel sick,foggy, achy, weak, dizzy, jangly but not yummy old fatigue: like you get when you have walked to the beach, or dug a garden bed, or shopped til you dropped.
Barbara LR. M.E. sufferer
M.E. appears to be in this same family of diseases as paralytic polio and MS. M.E. is definitely 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.
The Nightingale Definition of Myalgic Encephalomyelitis (M.E.) by Dr Byron Hyde 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 (The brain can no longer receive, store or act upon information which enables it to control vital body functions, cognitive, hormonal, cardiovascular, autonomic and sensory nerve communication, digestive, visual auditory balance, appreciation of space, shape etc). It has an UNIQUE Neuro-hormonal profile.
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.
Dr Elizabeth Dowsett
In all M.E. epidemic or endemic patients the patients represent acute onset illnesses. The fatigue criteria listed here can be found in hundreds of chronic illnesses and clearly defines nothing.
A New and Simple Definition of Myalgic Encephalomyelitis and a New Simple Definition of Chronic Fatigue Syndrome & A Brief History of Myalgic Encephalomyelitis & An Irreverent History of Chronic Fatigue Syndrome by Dr Byron Hyde 2006
This illness is distinguished from a variety of other post-viral states by a unique clinical and epidemiological pattern characteristic of enteroviral infection. Prompt recognition and advice to avoid over-exertion is mandatory.
Dr Melvin Ramsay & Dr Elizabeth Dowsett
[Legitimate descriptions of the illness are] a far cry from the hopelessly inadequate description of M.E. as 'chronic fatigue.' The distinction between fatigue and M.E. needs emphasising. If you are tired all the time, you do not have M.E. If you are feeling drained following a viral illness but are recovering over weeks or months, you do not have M.E. A central problem is the word 'fatigue' which doesn't come close to describing how sufferers can feel - comatose might be better. Like most people with M.E. I have acquaintances who say, 'Oh I feel tired at 4pm too, and would love a snooze.' But that's not it. Minds and bodies do not function. This is nothing like fatigue.
Lynn Michell in 'Shattered: Life with M.E.' p 6
If patients draw down their lifestyle to live within the means of the reduced cardiac output, then progression into congestive cardiac failure (CCF) is slowed down, but if things continue to progress, a point will be reached where there is no adequate cardiac output, and dyspnoea will develop, with ankle oedema and other signs of congestive cardiac failure. In order to stay relatively stable, it is essential for the patient not to create metabolic demand that the low cardiac output cannot match.
Dr Paul Cheney [video lecture]
Dr. Paul Cheney explained how the bodies of patients are choosing between lower energy and life, or higher energy and death. On a physiological level, patients live in a near-death suspension, making patients feel much like they are dying, not tired.
Peggy Munson 2003
There is a difference between diastolic dysfunction and diastolic failure: in diastolic dysfunction there is a filling problem but the body is compensating for it and achieving enough cardiac output to match metabolic demand. Diastolic failure begins when the body can no longer compensate and there is a reduction in cardiac output. This is seen in 80% of patients. In order to stay relatively stable and avoid heart failure, it is essential for the patient not to create metabolic demand that the low cardiac output cannot match.
Dr Paul Cheney [video lecture]
Patients have a high heart rate but a low cardiac output. There is a cardiac dimension that is independent of (but not excluding) autonomic function or blood volume. It's hard to talk about a low cardiac output without talking about the involvement of the brain and the adrenal glands. A mismatch between metabolic demand and cardiac output, even very briefly, will kill. If the cardiac output goes down, in order not to die, there is a rise in noradrenergic tone (also involving the adrenal glands) to bring the output back up. This is a serious problem, because when the adrenals are exhausted, there will be low cardiac output. There is no such thing as an [M.E.] patient who is NOT hypothyroid: this has nothing to do with thyroid failure, but everything to do with matching metabolic demand and cardiac output.
Dr Paul Cheney [video lecture]
Order of sacrifice in cases of declining microcirculation; First is the skin; second is the muscles and joints; third is the liver and gut (patients can usually only tolerate a few foods); fourth is the brain; fifth is the heart; sixth is the lung and lastly is the kidney.
Dr Paul Cheney [video lecture]
Among the major causes of death in [M.E.] is heart failure: 20% die of heart failure. There are two types of heart failure: systolic (which is a failure to eject) and diastolic (which is not a failure to eject, but a failure to fill properly). There are two types of diastolic heart failure: primary relaxation deficit giving rise to decreased cellular energy as seen in [M.E.] and secondary relaxation deficit as seen in hypertension, diabetes and the elderly over age 75. Primary relaxation deficit is a disorder that seems to have gone right under the radar of most cardiologists (who focus on the secondary relaxation deficit). Diastolic heart failure was first described in the 1980s but there was no significant literature until the 1990s, and no significant way to measure it until 2001. One is just as likely to die of diastolic heart failure as from systolic heart failure.
Dr Paul Cheney [video lecture]
If your illness is ME, the main thing you can do to help yourself is not push beyond your limits. I seriously damaged my health by pushing myself to continue at work after I became ill. I bitterly regret that now. I wish I had had access to Jodi's Hummingbird website at that time, which gives the all-important message that we must not push beyond our limits. Lesley, M.E. patient taken from Group comments on the importance of avoiding overexertion in M.E.
ME "old-timers" all say the same thing. Please take really good care of yourself, and don't get into the mindset of "needing" to push yourself because of things you want to do in the future. When you have ME, it's important to NOT push yourself, so you'll still be able to do those things in the future! You deserve to take really, really good care of yourself, especially right now, in the beginning.
I did the same thing too (pushing through, and over-exerting), and I regret every moment of it. If you are still within the first few years, and it IS really ME, please slow down the pace of your life - you still have a chance of a meaningful recovery if you're very careful. I wish I could go back and do it all over, but since I can't, I wanted to tell you that you can avoid the mistake we've made. I am now totally disabled, and during my "healthy times", I am doing good to leave the house for a couple hours 2 times a week (and there are a LOT of ME patients much worse off than me!). I also go through periods when I deal with a worsening of my symptoms (like now) and these periods are especially difficult to deal with (bed bound, house bound, etc for extended periods). Sarah, M.E. patient taken from Group comments on the importance of avoiding overexertion in M.E.
My worst acceleration in symptoms was when I was trying to work and go to university at the same time. I really wish I had listened to my body and stopped earlier (although I know this is really hard to do). I might have been able to go back and work part-time or something. As it is, I'm pretty sure the damage is permanent now. I don't think I will ever be able to work again. On the other hand I am so glad that I did not keep going. I'm sure that I would be a lot worse (scary thought!) if I had. N, M.E. patient taken from Group comments on the importance of avoiding overexertion in M.E.
'Adrenaline surges are one of the best and worst things about M.E. They provide a way for our bodies to cope with overexertion in the short term and they can allow us to attend events that are very important to us (such as funerals, weddings and medical appointments) which we would normally be too ill for. Unfortunately, they also let our bodies 'write cheques they can't cash' and are the reason why so many of us are severely affected. The payback for each adrenaline surge is just so enormous and so prolonged. It can be tempting to rely on them for a while especially when you are first ill, until the whole house of cards inevitably falls down and you are far more ill than when you started, possibly for months or years afterward. Adrenaline surges are also so often misunderstood by others. For example, when I warn a friend that I am having a bad day and may not be up to much while we have our visit, the adrenaline surge phenomena of M.E. sometimes creates an illusion of good health. I get more and more ill as the evening wears on, and when it gets bad enough that my body is in real physiological difficulty, my body floods with adrenaline and I appear to suddenly become quite well. I talk a lot and very quickly. It is frustrating but of course quite understandable that so few people can see the difference between genuine health and vitality, and an adrenaline surge brought on by a health crisis, the latter of which is anything but a sign of good health in the M.E. patient. I don't expect others to always recognise this sign of a pending relapse, but to have it misinterpreted as a sign of improvement can be hard to take!' JODI, M.E. PATIENT
If it is ME & you continue to overdo, you may well end up sooooooo much worse than you are now. It happened to Jodi, it happened to me, this determination that we are suffused with in our culture of soldiering through & mind over matter & good people get well...& then we do "fight the good fight"...& with this desease the price is very, very high & can be permanent. Hate to be a harbinger of doom, I know it is hard to imagine being more ill, but you do have an opportunity here to avoid our fate. Hard choices I know. Aylwin, M.E. patient taken from Group comments on the importance of avoiding overexertion in M.E.
For more information on Aylwin see: A memorial page and a memorial fund for Aylwin Catchpole
Copyright © by Jodi Bassett January 2009 on www.hfme.org This version updated August 2009
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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