The Hummingbirds' Foundation for M.E.

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
<blank look>
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:

• Once a patient gets going, stopping can be very difficult. This is due to neurological problems with stopping and starting new tasks easily, and also because once an adrenaline surge has occurred, it takes a long time to wear off.
  
  
• When a patient has become very ill from overexertion or is in the middle of an adrenaline surge, judgement can be affected, and the patient may be lost in the moment and not realize how important it is for them to stop what they are doing as soon as possible.
  
  
• Resting after a relapse is often very difficult for the M.E. patient emotionally. It can be very difficult to lie in a dark quiet room in extreme pain and worse, with no distraction from it. It can be tempting to keep the adrenaline surge going in a small way, to put off the crash. (A bit like drinking more alcohol the day after a night of heavy drinking to delay the inevitable horrible hangover.)
  
  
• Many patients with M.E. have been treated appallingly in the earlier stages of their illness. Medical abuse is very common. Patients have often been told or forced to keep pushing through their limits and that this is what they must do if they ever want to recover. This ignorant advice has forced many patients to develop a very high tolerance for pain and discomfort - and this can be a real obstacle when it comes to training oneself to rest appropriately when experiencing minor symptoms. Patients have often become very used to paying a high price afterwards for every little bit of fun they have or every task they do, and have had to accept this as a way of life for so long that change can be difficult.
  
  
• Many patients, along with much of the general population, have a very strong work ethic and at times find not pushing themselves to do things very difficult. M.E. patients need a level of discipline at least as high as the average Olympic athlete to control and restrict all their activities so completely for years.
  
  
• M.E. is an acute onset disease which means that patients go from healthy to very disabled from one day to the next. Being so disabled so suddenly is shocking and takes a long time to get used to. Particularly in the early years of M.E., patients often feel the need to constantly push at the boundaries to work out where their limits are. This is also often tied to denial of the realities of the disease, and a desire to keep ignoring physical limits in the madly optimistic hope that this will make them go away as quickly as they came.

Other reasons include:

• Due to the brutal severity of M.E., some M.E. patients must overexert just to live or to have a little bit of basic human contact.
  
  
• Many M.E. patients overexert themselves as they have no other choice, unfortunately, and do not have the appropriate financial or practical support they need due to the political situation facing M.E. patients. Patients with M.E. are also often forced to overexert themselves in order to get the welfare payments they are entitled to (and need to have to survive) and to try and get some basic medical care.
  
  
• Many M.E. patients are told that 'everyone recovers, it is just a matter of when, and at most you will be well in 5 years' by ignorant doctors, websites and patients that do not understand the massive difference between the neurological disease M.E. and mere post viral fatigue syndromes. Thus they have no idea that there is a big long-term cost with every short-term relapse, and by the time they do get this information it is often far too late and they have become severely affected and greatly harmed their chances of future recovery.
  
  
• Many M.E. patients are told that they are not ill, and that they cannot do things simply because they believe they can't. This incredibly abusive brainwashing can lead many patients to again and again try and push past their limits in a brave but misguided effort to 'mind over matter' the disease. Unfortunately, many patients have so much faith and trust in their doctors that they ignore what they know to be true about their own bodies and their disease for many months or even years, often ending up severely affected and very disabled.

 

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:

• Very fast and continuous talking is a sure sign of an adrenaline burst. Speech may also become very loud as the patient becomes unable to modulate their volume level. This may also be accompanied by fast and jittery movements. Speech may make evident feelings of euphoria, over-excitability or wild optimism and will often be less well-considered than normal. The patient may also sit up or stand for longer than usual (without realising they are doing so) or get fired up to undertake tasks that they would usually be too ill to do. (Big cleaning or organisational tasks for example.)
  
  
• After or during an adrenaline surge, sleeping and resting is very difficult as the patient feels 'wired' and very "unfatigued". Sleep onset may be delayed for many hours, perhaps leaving the patient unable to sleep until mid-morning or unable to sleep that night at all. The patient may also only be able to sleep for one or two hours at a time, awaken for a few minutes many times during the night, and/or may experience very light sleep where the slightest noise wakes them up.
  
  
• Particularly in the first few years of the disease, patients may sleep, or be unconscious, for much longer than usual after overexertion, perhaps 12 - 16 hours or more. In very severe cases, the patient may be unable to maintain consciousness for more than a few hours a day.
  
  
• When suffering a severe neurological episode M.E. patients may be mistaken for being drunk or high on drugs. They may slur their words, talk very fast and ramble, seem euphoric and have very poor balance.
  
  
• 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 to boost blood volume).
  
  
• 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.
  
  
• 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.
  
  
• Sudden loss of ability to walk.
  
  
• Very sore throat and/or painful and tender glands in the neck (and possibly other flu-like symptoms).
  
  
• 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.
  
  
• 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 (or alternating very hot and very cold). Pulse and/or temperature measurements may be useful in determining when a patient is overexerting. As blood pressure readings tend to only be severely abnormal when the patient is standing or sitting upright - which in itself causes relapse - this test will often be counter-productive and inappropriate.

Other things to be aware of:

• Sometimes when the patient is running on adrenaline, it is very obvious that this is what is happening. The patient is able to do more than usual but feels very unwell and wired; a bit like they haven't slept in days but have had a LOT of coffee. At other times, particularly where the adrenaline surge is long-lasting, the adrenaline effects can be more subtle and can easily be mistaken for genuine wellbeing for a period of time.
  
  
• 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. The big task was well beyond their limits and so the body has releases 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, especially where there are problems with memory and placing events which occurred weeks ago in the appropriate timescale. (Events which occurred more than a few days ago may be forgotten, or seem to have occurred much longer ago than they actually did.)
       This type of adrenaline surge can sometimes fool even the most experienced M.E. patients. Having hope of improvement replaced with the realities of a severe relapse can be very disheartening, to say the least.
  
  
• When a patient regularly pays a big price for doing small tasks but then suddenly pays only a small price for a big task, suspect an adrenaline surge. There is just no such thing as a free lunch with M.E., unfortunately. (No expected relapse indicates use of the 'credit card' or that the patient's body is 'writing cheques it can't cash!')
  
  
• 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. The need for a long rest period before a task is a sign that this task is not within usual limits and will probably require an adrenaline surge to be completed and so be detrimental to the patient's long-term health.
        Ideally, a patient will only complete tasks which can be done daily or every second or third day without causing relapse. The goal is to do only 80% of the activity that can be done sustainably each day.
  
  
• Thanks to adrenaline surges, a patient may spend several hours one day a week studying or working and then 6 days extremely ill and disabled, or be able to struggle through study or work part-time and spend the other half of their week as well as all their weeks off and end of year holiday time extremely ill and disabled. This type of schedule can only be kept up for a few years at best, as the patient becomes sicker and sicker and less able to bounce back from relapses.
  
  
• Some patients will manage their limits very carefully but still exhibit signs that they are running on a low level of adrenaline most or all of the time. This is likely an indication that more rest is needed and that more challenging tasks should, if possible, be scaled back or discontinued.
  
  
• When the adrenaline surge starts to wane, the patient will often feel very irritable. Part of this is due to problems with blood sugar and so eating a substantial meal can help the patient feel better both physically and emotionally. Cravings for sugar and carbohydrate-rich foods are common at this time, but a meal containing some protein, fat and some low GI and GL carbohydrate foods is a better choice. Part of this is also an emotional response, as coming down form an adrenaline high is very difficult emotionally. A patient has just had a reminder of how it might be if they were not as ill and disabled, and also has a significant worsening of their symptoms and disability level.
       The patient may also feel very cold and shaky and even more sensitive than usual to light and noise as an adrenaline surge starts to wane.
  
  
• When a person with M.E. starts to rest after an adrenaline surge, it takes a little while for the adrenaline to wear off. So the patient will start resting and slowly start to feel more and more unwell. Unfortunately the patient will have to go through a period of feeling much worse, in order to feel better. Starting to feel worse shows that the adrenaline is wearing off and that the patient is resting properly. The period of feeling very ill may last for hours, days or weeks or longer, depending on how ill the patient is and how severely they overexerted.
  In contrast, when a M.E. patient who has not overexerted rests they will feel better right away and this improvement may continue to build over time. Thus feeling much more ill after a period of resting is another sign that the patient has been running on adrenaline and overexerting.

 

What can you do to help?

• When you notice fast talking, and other signs of an adrenaline burst or surge, encourage the patient to slow down. Perhaps remind them that the sooner they rest, the better off they will be.
  
  
• When a patient is talking very fast and very loudly, subtle reminders to speak more quietly may be helpful. (Remember that slow slurred talking may in fact be a very good sign of health and of living within limits!)
  
  
• When you notice a patient sitting or standing up when they do not need to, or for longer than they can usually cope with, a reminder to lie down may be helpful as the patient may not realise that they are standing up for too long.
  
  
• When the patient has completed a big task that was far beyond their limits out of necessity, be aware from the outset that this will cause a surge of adrenaline to be released. This surge will affect the patient during the event but probably also for some days or weeks or months afterwards. The patient may feel somewhat less ill and be able to do some tasks which they haven't managed for some time. But tasks done using adrenaline surges come at a very high cost long-term and so must be strongly discouraged and absolutely never encouraged.
       Making sure that the patient is aware of this characteristic of M.E. before a big task is completed and before they tragically misinterpret these signs of serious overexertion and illness as a desperately wanted improvement in their condition can only be helpful.
  
  
• When a big adrenaline surge has occurred, the only way to stop it is to make sure that the body is no longer placed in physiological difficulty. For the severe M.E. patient, this will mean at least 3 days of complete rest. (The time period of rest needed will vary with how severe and prolonged the surge is and how ill the patient is.) Adrenaline will stop being released when the body is at rest and time has passed allowing the adrenaline in the system to wear off.
       Severely affected patients will need almost complete rest constantly, to avoid adrenaline surges and relapses in symptoms.
  
  
• Do not instigate conversations with a patient when they are trying hard to come down off an adrenaline surge. You may ruin hours of solid resting by asking a question that forces the patient's body to have to rely on adrenaline again in order to reply. If possible, write down any questions you have so that the patient can answer them in their own time and in the way easiest for them. When patients are severely affected and can't speak often, you may want to devise a system whereby they can reply to yes and no questions or questions with 2 options using hand signals or printed cards.
  
  
• If possible, if you are a carer who visits the patient's home for a few hours a day, make a set time to talk to the patient so that they do not have to be in 'on' and ready to talk the whole time you are there. Staying 'on' may require an adrenaline burst and leave the patient very ill afterwards even of you only spoke to them very briefly. Having to be 'on' in case of interaction is almost as taxing as actually talking, for many patients.
  
  
• When you speak to a M.E. patient who is very ill or relapsing, speak slowly, calmly and somewhat softly. Do not speak loudly or shout. Do not ask stressful or difficult questions when the patient is at their most ill or if it is not their 'best' time of day.
  
  
• Don't repeat things unless you are asked or indicated to do so. M.E. patients often have a significant time delay in understanding spoken words, and they may rely on a period of silence after each statement in order to understand what you have said.
  
  
• For more information on how to appropriately treat M.E. patients and help them to avoid relapse please see the following two essential papers:Hospital or carer notes for M.E. and also Why patients with severe M.E. are housebound and bedbound.

 

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.

 

Conclusion

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.

 

 

Quotes

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.

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.

This paper is dedicated to my dear friend Aylwin Catchpole. Aylwin was the first fellow M.E. patient I met that really understood that the 'adrenaline surge' was a part of M.E. and was suffering with it all as much as I was. Over many emailed conversations she helped me understand this phenomenon, and so was very much a contributor to this paper. Aylwin died in 2010 (before this paper was written) and is much missed, but I am sure she would be happy to know that this paper had been written and that hopefully many M.E. patients will get this information at the start of their disease, rather than many years or decades in – like we both did.

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  

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