The Hummingbirds' Foundation for M.E.

The Hummingbirds' Foundation for M.E. (HFME) is fighting for the recognition of M.E.,
and for patients to be accorded the same basic human rights as those with similar
disabling and potentially fatal neurological diseases such as M.S.

Hospital or carer notes for M.E.

Hospital or carer notes for M.E.  This paper provides general information on how to appropriately care for M.E. patients for carers and hospital staff.

A form is also provided that M.E. patients can print and fill out to give carers more information about their illness, where appropriate. An ability/disability scale is also included. (If you're too ill to, or don't want to, fill out the form provided just print off the first 5 or 6 pages of the text and ignore the rest.)

See the Downloads section below to download a copy of 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.

Hospital or carer notes for M.E.

Copyright © Jodi Bassett April 2008. This version updated March 2009. From www.hfme.org                         

Patients with Myalgic Encephalomyelitis have a variety of specific care needs, some of which are well-known and common to a variety of other illnesses and others which are unique to M.E. and with which hospital staff or carers may be wholly unfamiliar.

Inappropriate care (even if well intentioned) can have serious consequences for M.E. patients in the short term and the long term, or even permanently. Knowledge of some of the basics about how M.E. affects the body is vital if you are in the position of providing care for someone with M.E. in order to avoid additional unnecessary suffering and disability. This paper provides a brief overview of this topic for hospital staff, carers or family members.

 

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:

  • Physical activity
  • Cognitive activity
  • Sensory input (exposure to light, noise, movement and vibration), and
  • Orthostatic stress (maintaining an upright posture)

The main characteristics of the pattern of symptom exacerbations, relapses and disease progression (and so on) in M.E. include:

  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. The severity of M.E. waxes and wanes throughout the hour/day/week and month.
  6. The worsening of the illness caused by overexertion often does not peak until 24 - 48 hours (or more) later.
  7. The effects of overexertion can accumulate over longer periods of time and lead to disease progression, or death.
  8. 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.
  9. 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.
  10. Repeated overexertion can harm 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.
  11. 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 post-illness physical, cognitive, orthostatic and other limits, they will experience some combination of the following:

  • A mild-severe (acute or delayed) worsening of one or more symptoms for hours, days or longer afterward
  • A mild-severe  (acute or delayed) worsening of virtually every symptom for hours, days or longer afterward
  • A severe (acute or delayed) worsening of the base level of illness/disability for hours/ weeks/ months or even years afterward, or
  • A permanent worsening of the base level of illness/disability (i.e. permanent physical damage is caused and chances for significant recovery are adversely affected or taken entirely)

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.)

 

So what are the top 10 most obvious things you need to be aware of in providing care to a M.E. patient?

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

 

1. Reduce exposure to light

-Some patients will require the room to be completely dark (or very close to it), some will be fine so long as blinds and doors are kept closed, while other patients will fit somewhere in-between these two extremes.

 

2. Reduce exposure to noise

-At a minimum, doors and windows must be kept closed to reduce noise. Anyone entering the room must also take care to reduce or eliminate noise as much as possible, particularly if a patient has severe noise sensitivity.

-Open wards such as in emergency rooms are a DISASTER for M.E. patients. They WILL without exception cause months or more of severe relapse in the severely affected and may also cause a more immediate worsening of the overall condition and should be avoided if at all possible. (Moderately affected patients may also relapse severely in an open ward.) Sharing a room with another patient is also inappropriate for the severely affected M.E. patient and will also cause a high level of increased pain and suffering and long term relapse.

-The problem here is not merely pain in the ears and painful or burning eyes. Even low levels of noise or light (and other sensory input) can cause a significant and prolonged worsening of the severity of the condition overall, as well as symptoms including seizures, severe mental confusion and inability to process even very simple information, episodes of paralysis, problems with proprioception, balance and so on. Pain levels can quickly soar to a 10/10 level even with moderate or brief noise or light exposure, and recovery can be prolonged.

 

3. Reduce/eliminate all non-essential visitors

-As well as reacting badly to the extra noise and light exposure caused by visitors, patients can also be made sicker by watching the movement of someone in the room, and by the extra demands made on the brain when talking and listening to speech is required.

-In the case of cleaners, these should be cancelled for the duration of the hospital stay, both for the reasons outlines above, and because many M.E. patients have sensitivities to many common chemicals used in cleaning products. (Exposure to these chemicals may merely trigger headaches but in some cases they can cause extremely severe relapse.)

-It is counter-productive and ill-advised to do hourly ‘obs’ (pulse and blood pressure checks etc.) on a patient with severe M.E. as this will soon cause them to deteriorate in both the short and the long term (or even permanently).

 

4. Do not encourage patients to be more physically active (or upright longer) than their bodies and hearts can easily tolerate

-Even sitting up in bed propped up by a few pillows counts as ‘being upright’ when someone is severely affected, and even 30 seconds or a few minutes of being fully upright may be long enough to cause problems.

 -Physical activity doesn’t just include strenuous activity, but any movement. Even simple movements or stretching of the muscles can cause a worsening of the condition in the severely affected. Physical tasks may need to be broken up into many smaller tasks with long rest periods in-between.

-Some patients will require wheelchairs, but those who also have severe orthostatic problems (problems with being upright, including sitting) must not be put in wheelchairs at all and will need to be moved lying flat in bed (or lying flat on the back seat of a car) at all times. (Even then travelling can still cause severe relapse.)

 

5. Try to schedule demanding tasks for the patients best time of day as much as is possible

-Find out when the patient’s best time of day is, and try to fit tasks in to that window as much as possible.

-Don’t expect that a patient will necessarily be able to do the same things at different times of the day. Some tasks may only be possible at certain times of day, or after a long period of rest. Making a patient do difficult tasks at the time of day when they are at their most ill, can not only make the task much harder or impossible, but also cause a far worse relapse than if attempted at their most well time of day.

-It is also important that you pay attention to visual and other cues that let you know how ill and how disabled a M.E. patient is at a particular time, and when is and isn’t an appropriate time to engage them in conversation or to attempt potentially difficult tasks. For example, if the patient does not speak to you on either their walk to the bathroom or the walk from the bathroom back to their bed it is most likely that they are not well enough to speak at this time and so should not be engaged in conversation at this time.

     It should not be assumed that just because a patient can do one task or is out of bed, that they are feeling well or are at their best and are also capable of completing other tasks at the same time. Often the opposite is true: the fact that the patient is already doing something difficult leaves them less likely to be feeling well and able than usual, rather than more. As a general rule, if someone has severe M.E., please don’t speak to them more than you absolutely have to, unless you are given clear encouragement by the patient at this time to do so. Even then, watch the patient carefully for signs that they are starting to become ill from this exertion and end the conversation as soon as possible when this occurs.

-If possible, it would be helpful for carers to be on the lookout for signs that the patient is pushing themselves to the point of relapse and to make the patient aware of this and of the need for them to rest immediately. These signs may be noticed by an observer more quickly and more easily than by the patient. Signs may include: talking excessively and very fast (due to bursts of adrenaline which can be released when they body is in severe physiological difficulty and unable to cope), talking in a very stilted way with large pauses between words, slow and slurred speech, the feet tuning purple or blue when the patient has been upright too long, the face turning white or the facial expression becoming blank (the person may also be ‘slack-jawed’ and have their mouth open), excessive blinking or an inability to keep the eyes open at all, excessive water drinking (which can indicate that the patient’s body is trying to reduce cardiac insufficiency by increasing blood volume), sighs or grimaces of pain, increased clumsiness and mental confusion, and so on. Signs will vary depending on the person.

 

6. Try to reduce the patient’s levels of cognitive exertion and sensory input

-Sensory input includes; light, noise, movement, touch and also vibration.

-Travelling by car can be excruciating with severe M.E. and can cause a severe and prolonged worsening of neurological, cardiac and other problems. Even being lifted from one bed to another can cause relapse.

-Cognitive exertion includes talking and listening to speech, reading and writing, watching TV, listening to music and so on. Talking as well as listening to speech can be very difficult or impossible. Even speaking to someone with M.E. for longer than they can easily cope with (even if you aren’t forcing them to reply) can be disastrous and cause very severe relapse or a deterioration of their overall condition. Cognitive tasks may need to be simplified and broken up into many smaller tasks with long rest periods in-between.

-Some severely affected patients are unable to maintain consciousness for more than short periods at a time. Some may only be properly conscious for a few hours a day or less. Sometimes consciousness cannot be maintained for more than 10 minutes or so consecutively (or less). Trying to force these patients into consciousness for longer periods can only be counter-productive, unfortunately. It can quickly make the problem even worse. (Aside from certain medications and other treatments, what will help improve this condition most is rest.)

-Even mildly cold or warm weather (or room temperatures) can cause severe problems (and severe suffering) for many M.E. patients; particularly warm or hot weather. If patients become cold it can exacerbate joint stiffness and pain, and beyond a certain point the body is unable to make itself warm again without something like a warm bath as with M.E. the brain and body has lost the ability to properly regulate temperature (to maintain homeostasis). Warm or hot weather is tolerated very poorly by M.E. patients and can easily cause severe and prolonged relapse of all symptoms and a severe loss of ability (including cognitive abilities). Because M.E. makes the body unable to react and adapt as it should to warm and cold temperatures, patients must MANUALLY be able to make sure they do not get too hot nor too cold – even for short periods. (Air conditioning is vital in summer, and blankets, a heater and possibly also warm baths or an electric heat pack are needed in winter. Some patients also have such severe problems with temperature control that they are unbearably cold even in the middle of summer, or they go from very hot to very cold over and over again from one 5 minute period to the next and so need to keep continually adjusting blankets etc. to try to cope.)

 

7. Be aware of any special dietary requirements

-Patients will often be intolerant of a large variety of foods. Some may also have food allergies.

-There may also be strict requirements – due to the metabolic problems seen in M.E. – that a patient eats every 2 or 3 hours (or even more often) and that meals or snacks are high in protein and low in sugar and carbohydrate to prevent relapse. (High sugar or high carbohydrate foods are often very poorly tolerated by M.E. patients).

-Some patients will require assistance from a carer to eat (or tube feeding in severe cases). Problems with swallowing can also make eating or drinking difficult or impossible for the M.E. patient.

 

8. Be aware of the likelihood of negative drug reactions

-M.E. patients can react badly to almost every type of drug; particularly those which act upon the CNS.  Some severely affected patients are unable to tolerate any drugs or over the counter vitamins and other supplements at all, although many will have found a small number of products that they can tolerate through much trial and error.

-Negative effects from taking certain medications can range from headaches and feelings of being poisoned, to a severe worsening of the overall condition, and so on. The relapse caused by medications can also sometimes be semi-permanent; the patient does not regain the level of health they had before they tried the new medication.

-All new medications should be started one at a time and at very low doses (eg. 1/10th of a standard dose)

-Patients may also react badly to the chemicals contained in many personal care products. If this sensitivity is very severe, visitors must avoid wearing these products as much as possible before visiting. Chemicals often used in building or cleaning can cause pain, headaches and other symptoms in some patients, as can exposure to mouldy environments. An M.E. sufferer may be adversely affected by a level of chemicals or mould which is not detectable, or only barely detectable, by a healthy person. Not every M.E. patients is affected significantly by chemical and mould exposures but for some this is a severe problem.

 

9. Be aware of the need for extensive rest and problems with sleep

-Patients with M.E. need a lot of rest, but often find it impossible to get much sleep or find initiating sleep very difficult, or can only achieve a very low quality of sleep or sleep only for short periods at a time.

-It may take some patients 4 or more hours to initiate sleep. Being interrupted with noise or light or visitors during this time may make that period even longer, or prevent the initiation of sleep altogether. Even low level noise can sometimes wake M.E. patients who cannot achieve normal deep sleep and so are very light sleepers.

-Some patients cannot ever sleep for more than a few hours a time post-M.E., and so they need to be left alone as much as possible in order that they get these much needed sleep periods. (Sleep doesn’t necessarily help M.E. symptoms much – often patients feel just as ill or even much worse on waking than they did before they went to sleep – but missed sleep causes severe worsening of symptoms/disability. The way it feels to have M.E. and not to have slept much the night before is indescribably horrific, particularly when M.E. is severe.)

-Rest periods are very important in M.E. (including short micro-rests). Patients may be made far more ill by tasks which do not allow suitable rest periods. (Even talking very fast with no pauses to someone with severe M.E. can cause them to become more ill and to not be able to understand what is being said, for example.)

 

10. Be aware that these aforementioned relapses can be significantly delayed (and so they are not always visible on superficial examination), and that they can be very serious and prolonged - or even fatal in a minority of cases

-Don’t make superficial judgements of a patient’s ability levels. If you want to know how a patient is feeling or if they can or can’t do a certain task, just ASK THEM!

- People with M.E. are very highly motivated to be as active as they possibly can be (as anyone would be with so many restriction on their lives), but they know that if they push themselves to do more than their bodies can handle, the end result will be a huge LOSS of ability levels, and a higher level of suffering, and so this is not in their best interests. (The way people with M.E. get to be as active as possible is by carefully staying within their post-M.E. limits. This also gives the patient the best chance for their best possible outcome long-term.)

-Do take the risk of relapse, and the patient’s unwillingness to unnecessarily become far more ill for days, weeks or longer – very seriously. Many M.E. patients are suffering in a fairly extreme way already, and their lives are so painful and limited as to almost be unbearable already, without any additional worsening of the condition.

 

Conclusion

Just do your honest best. Achieving all of these tasks perfectly all the time may not be possible, it’s a lot to take in and a lot to think about all at once, but everything that you can do to reduce the relapse from a hospital stay will make a real difference and be much appreciated. 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 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.)

Following this text are some additional forms about specific symptoms and disabilities that patients may or not want to (or be well enough to) fill out in order to give you more information about their needs, where this is appropriate.

Thank you for taking the time to read this paper.

Additional notes

1.     For more information on all aspects of M.E. see: What is Myalgic Encephalomyelitis? If a M.E. patient is in hospital for surgery, please be aware that certain precautions must be taken with anaesthesia for the safety and wellbeing of the patient. Please read: Anaesthesia and M.E.

 

2.     Note that hospital trips (or any travelling out of the house) should be an absolute last resort for patients with severe M.E. because of the enormous price they pay for such trips. It 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.

This extreme level of suffering is not short term either. It is very, very common for severely affected patients to spend 6 months, 12 months, several years or longer recovering from a hospital trip. Some never do recover. (Again, there have also been cases where a M.E. patient has left hospital only to go home and die.)

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. For more information on this topic please see the important new paper: Why patients with severe M.E. are housebound and bedbound

3.     To read a complete list of the articles and resources available on the site suitable for different groups – severe M.E. patients, M.E. patients, patients misdiagnosed with ‘CFS,’ doctors, friends and family of M.E. patients, carers and so on – see the Information Guides page.

4.     For information about the significant medical similarities, and political differences, between M.E. and MS see M.E. vs MS: Similarities and differences

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.     What does ‘rest’ mean exactly? 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.

7.     Try not to make superficial judgements of ability or severity! 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.

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 in The effects of CBT and GET on patients with Myalgic Encephalomyelitis or Treating Myalgic Encephalomyelitis - Avoiding Overexertion.

Ability/disability chart for Myalgic Encephalomyelitis

I have had M.E. for ______________ months/years, since I was _________ years old.

I am currently (tick the appropriate box):

MILD/MODERATELY AFFECTED Physical activity is at around 50 - 60% of expected. Unable to perform strenuous tasks without difficulty, but able to work part-time in light activities or deskwork for 5 – 7 hours a day, although rest periods are required. Physical abilities degenerate significantly with sustained exertion. Cognitive functioning is at around 50 - 60% of expected. Unable to perform tasks which are excessively demanding on a cognitive level, but can complete lighter activities for 5 – 7 hours a day although rest periods are required. Cognitive functioning degenerates significantly in a crowded, noisy or busy environment or with sustained and/or high level use. Social life may be moderately affected. Mild/moderate symptoms (4 or 5/10) at rest. There is mild/moderate pain and/or sensations of illness/dysfunction throughout the body and brain for some parts of the day. Increasing moderate symptoms (6 or 7/10) for several hours, days or weeks following physical or mental activity beyond the person’s limits.

MODERATELY AFFECTED Physical activity is at around 40 - 50% of expected. Unable to perform strenuous tasks, but able to work part-time in light activities or deskwork for 4 - 5 hours a day if requirements for quiet and resting are met. Physical abilities degenerate significantly with sustained exertion. Physically undemanding social activities are possible.

MODERATE/SEVERELY AFFECTED Overall activity level reduced to around 20 - 30% of expected. Not confined to the house but may be unable to walk without support much beyond 50 to 200m, a wheelchair may be able to be used to travel longer distances. Several hours of deskwork may be possible each day if requirements for quiet and resting are met. Requires 3 or 4 regular rest periods during the day, only one ‘large’ activity possible per day usually requiring a day or more of rest in-between. Physically undemanding social activities are possible.

SEVERELY AFFECTED Overall physical activity level reduced to around 5-10% of expected. Usually confined to the house but may occasionally (and with a significant recovery period) be able to take a short wheelchair ride or walk, or be taken to see a doctor. Most of the day needs to be spent resting except for a period of several hours interspersed throughout the day when small tasks may be completed (or one larger one). Bedbound or couch-bound for 21+ hours a day. Activity is mostly restricted to managing the tasks of daily living and some assistance with or modification of tasks is often required.

VERY SEVERELY AFFECTED Overall physical activity level severely reduced. No travel outside the house is possible. Bedbound the majority of the day (22+ hours) but may (with difficulty and an exacerbation of symptoms) be able to sit up, walk or be pushed in a wheelchair for short periods/distances interspersed throughout the day (to the bathroom or to travel from room to room). Almost all tasks of daily living need to be done by others and/or heavily modified. Eating may be very difficult.

EXTREMELY SEVERELY AFFECTED Overall physical activity level very severely reduced. No travel outside the house is possible. Close to completely bedbound (lying flat in bed 23.5+ hours a day). May sometimes (with difficulty and with an exacerbation of symptoms) be able to sit up, walk or be pushed in a wheelchair for very short periods/distances interspersed throughout the day (to the bathroom or to travel from room to room). All tasks of daily living need to be done by others and/or very heavily modified. Eating and drinking may be very difficult.

PROFOUNDLY SEVERELY AFFECTED Completely bedbound and often/always unable to turn or move in bed (or at all) unassisted. Eating is extremely difficult and liquid food may be necessary. Swallowing liquids may also be difficult/impossible and in some cases nasal-feeding tubes may be required. Unable to care for oneself at all. Bed-baths (and other personal care tasks) undertaken by a carer or family member may cause severe and lasting relapses in symptoms and so only be able to be attempted occasionally. Concentration, memory and other cognitive abilities are extremely severely affected. Achieving even a low level of concentration may be extremely difficult or impossible and there may be a high degree of cognitive confusion as a result. No TV or radio is possible. There may also be a difficulty maintaining consciousness for more than a few moments or minutes at a time. Any visitor to the room is almost impossible. Talking, even to the carer/family, is often impossible. Reading or writing more than the occasional few words is often extremely difficult or impossible.

There is very severe (9/10) pain and/or overwhelming sensations of illness/dysfunction throughout the body and brain continually - worsened to extremely severe (10/10) by even trivial physical or mental activity with a recovery period of hours, days or several weeks or months or more. In some patients any type of stimulus is intolerable, even very short/low exposures to light, noise, movement and motion are excruciating and may require a long recovery period. The smallest physical movements bring intense exacerbations in symptoms. Mental activity is similarly affected. It is all the person can do to just get through the day a few seconds or a minute at a time.

 

This is a summarised version of the full-length ‘M.E. Ability Scale’ available on www.hfme.org

Hospital notes form

How Myalgic Encephalomyelitis affects my abilities: A form to be filled out by the patient for the benefit of Hospital staff and carers

 

Name:

Date:

 

(Patient note: Just fill in as much of the form as possible or as much as you feel is necessary. It doesn’t matter if you can’t read or fill-in all of it. If you are very ill, just circle those statements which are most important and leave the rest, or perhaps give this form to a knowledgeable family member to fill out on your behalf or as per your verbal instructions. Parents of a child with M.E. may need to assist the child in filling this form out. Where multiple options are given, either circle the most appropriate answer or cross out any which do not apply.)

 

1. Photophobia (sensitivity to light exposure)

My problems with photophobia are mild/moderate/severe/very severe

To cope with this I need:

 

2. Noise sensitivity

My problems with noise are mild/moderate/severe/very severe

The noises which bother me most are:

The time of day my noise sensitivity is at its worst is morning /noon /afternoon /evening/all day

Voices can also be very painful for me. Could you please: whisper at all times and/or don't speak to me until afternoon /late afternoon/ evening or until I tell you that I am well enough to speak

To cope with this problem I need:

 

3. Visitors

Having visitors causes me mild/moderate/severe/very severe relapse

Visitors to my room are fine, but could you just please carefully limit noise/light: yes/no

Please limit all unnecessarily visitors to my room: yes/no

Please stop all unnecessarily visitors to my room: yes/no

Notes:

 

4. Physical activity and orthostatic stress

I am limited with regards to physical activity in the following ways:

I need care 24 hours a day.

I need assistance for almost everything. Unaided I cannot:

I need minor/moderate/total assistance with dressing, eating, food preparation, toileting, bathing, personal care and hygiene, standing. I need:

I am limited with how much I can be upright, in the following ways:

I can be upright for around    minutes/hours a day, but for no more than  minutes / hours at a time (only at times of my choosing, I must have time to rest from last period standing before I can do it again).

I cannot sit or be standing up at all.

I have to eat, drink, toilet, bath, dress lying down.

My orthostatic problems are mild /moderate /severe. If I am upright for longer than I should be, what happens is the following, and so I need you to:

 

5. Changes to my illness severity/abilities over the day

My best time of the day is usually:

My worst time/s of the day is usually:

 

6. Problems with cognitive tasks and sensory input

Some people with M.E. have problems with speaking. This is a mild /moderate /severe problem for me:

All the time.

At certain times of the day, or after I have been active in some way.

Sometimes.

Occasionally

The problem I have is (tick all boxes which apply):

I can't speak at all.

I can speak only a few words at a time.

I can speak only at great physical cost (i.e. severe pain and/or relapse).

I can only speak very quietly.

I slur my words and am hard to understand.

Sometimes I cannot speak at all and the only way I can communicate is through using hand signals

 

Could you please help me with this by:

The cognitive problems I have are mild/moderate /severe/very severe

I need assistance with everything

I often need help understanding things

I occasionally need help understanding things if very unwell

I often need help remembering things.

I cope better with written information than audio

I cope better with audio information than text

I need things repeated to me many times over

I need to record conversations/ take notes so that I remember them

I forget things sometimes /often /very often.

I need things explained to me in a simple way sometimes/often/always

I find it very hard/ impossible to read or to understand speech at times.

I often have difficulty maintaining consciousness for more than     minutes/hours at a time.

I often have difficulty paying attention/ thinking for more than    minutes/hours at a time or for more than    minutes/hours a day.

I can usually watch   minutes/hours of TV a day, for  minutes/hours at a time, on a good day.

I can listen to the radio or music for  hours at a time, for  hours a day, on a good day

I can usually read for  minutes/hours a day, on a good day

I can usually talk for   minutes/hours a day, on a good day

 

I would appreciate it if you could help me with my cognitive problems by:

I'm sensitive to temperature in the following ways:

Even mildly warm temperatures make me ill.

If I get even slightly cold it is very unpleasant and I soon become extremely cold for a long time afterwards (or pass out in a ‘cold fever’).

I am sensitive to touch in a mild/moderate/severe way. Could you help me with this by:

I am sensitive to vibration in a mild/moderate/severe way. Could you help me with this by:

 

7. Special dietary requirements

My diet is affected by my illness in the following ways:

I require small meals every    minutes/hours (due to metabolic problems)

Foods which I am intolerant of in some way include: stimulants (coffee, tea, caffeinated soft drinks, some herbal teas which contain ginseng, lomatium, mate and ma huang), sweeteners (sugar, dextrose, glucose, fructose, splenda, aspartame and saccharin), high levels of animal fats (may not be digested easily), additives (artificial colours, flavours, preservatives, MSG), foods from the nightshade family (potato, capsicum, eggplant and tomato), dairy products, fruit (may be difficult to digest and the high levels of fructose can trigger hypoglycaemia and other problems), gas producing foods (onions, cabbage, brussels sprouts, broccoli), spicy foods, raw foods (may be difficult to digest), fermented and mouldy foods and foods containing yeast or wheat, acid foods, nuts and soy.

I also need to avoid the following foods:   

Other notes on diet:

 

8. Negative drug and chemical reactions

I have sensitivities to certain drugs (and other medications) that are usually mild/moderate/severe.

I can take most medications, but have a problem with:  

Other notes:

I have sensitivities to chemicals and airborne allergens that are: mild /moderate/severe. I am sensitive to:

Precautions that I have to take because of this problem include:

If I don't take these precautions, what happens is:

 

9. Rest and problems with sleep

My sleep is affected by Myalgic Encephalomyelitis in the following ways: 

Notes:

 

10. Miscellaneous

A. Emotional stress: Excessive emotional stress can cause my condition to worsen. This is usually a mild/moderate/severe problem for me. Could you please try to avoid:

B. Secondary infections: Some people with Myalgic Encephalomyelitis are very susceptible to secondary infections i.e. colds/flu etc. These infections can also last much longer or be more severe than usual.

This is a mild/moderate /severe problem for me. It would be great if you could please:

C. What this trip to hospital will mean for me: Judging from my many, many past experiences, when I get home from hospital I will likely be mildly/ severely/very severely more ill than usual. This will probably last for

The reason I am so severely affected in the first place is because I was encouraged or forced to be more active than my body could cope with in the early stages of my illness. When I was first ill I was only moderately affected.

The reason I am so severely affected is because of inappropriate medical care. When I was first ill I was only moderately affected.

D.  Other symptoms not mentioned: Other symptoms I have that it is important that you know about include:

1.

2.

3.

4.

5.

 

E. My worst symptoms: My top 5 problems, disabilities or symptoms would be:

1.

2.

3.

4.

5.

 

Please take care most of all to:

Thank you.

For more information on all aspects of M.E. see: What is Myalgic Encephalomyelitis? available online at www.hfme.org

(Note to patients: If you are having surgery, you might like to include a copy of the Anaesthesia and M.E. paper with this text. Make sure you also attach a full list of any medications you are taking to this text.)

References

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.

Disclaimer: The descriptions of symptoms in this paper are not intended to form a definitive definition of M.E. This paper is not intended for use as a diagnostic tool. It is a research-information resource only. Please consult your own health-care provider regarding any medical issues relating to the diagnosis or treatment of any medical condition.

A one-page summary of the facts of M.E.<

Copyright © Jodi Bassett, January 2009. This version updated May 2009. From www.hfme.org                            

  • Myalgic Encephalomyelitis is a disabling neurological disease that is very similar to multiple sclerosis (M.S.) and poliomyelitis (polio). Earlier names for M.E. were ‘atypical multiple sclerosis’ and ‘atypical polio.’

  • Myalgic Encephalomyelitis is a neurological disease characterised by scientifically measurable post-encephalitic damage to the brain stem. This is always damaged in M.E., hence the name M.E. The term M.E. was coined in 1956 and means: My = muscle, Algic = pain, Encephalo = brain, Mye = spinal cord, Itis = inflammation.  This neurological damage has been confirmed in autopsies of M.E. patients.

  • Myalgic Encephalomyelitis has been recognised by the World Health Organisation’s International Classification of Diseases since 1969 as a distinct organic neurological disease.

  • Myalgic Encephalomyelitis is primarily neurological, but also involves cognitive, cardiac, cardiovascular, immunological, endocrinological, metabolic, respiratory, hormonal, gastrointestinal and musculo-skeletal dysfunctions and damage. M.E. affects all vital bodily systems and causes an inability to maintain bodily homeostasis. More than 64 individual symptoms of M.E. have been scientifically documented.

  • Myalgic Encephalomyelitis is an acute (sudden) onset, infectious neurological disease caused by a virus (a virus with a 4-7 day incubation period). M.E. occurs in epidemics as well as sporadically and over 60 M.E. outbreaks have been recorded worldwide since 1934. There is ample evidence that M.E. is caused by the same type of virus that causes polio; an enterovirus.

  • Myalgic Encephalomyelitis can be more disabling than MS or polio, and many other serious diseases. M.E. is one of the most disabling diseases there is. More than 30% of M.E. patients are housebound, wheelchair-reliant and/or bedbound and are severely limited with even basic movement and communication.

  • Why are Myalgic Encephalomyelitis patients so severely and uniquely disabled? For a person to stay alive, the heart must pump a certain base-level amount of blood. Every time a person is active, this increases the amount of blood the heart needs to pump. Every movement made or second spent upright, every word spoken, every thought thought, every word read or noise heard requires that more blood must be pumped by the heart.
         However, the hearts of M.E. patients only pump barely pump enough blood for them to stay alive. Their circulating blood volume is reduced by up to 50%. Thus M.E. patients are severely limited in physical, cognitive and orthostatic (being upright) exertion and sensory input.
         This problem of reduced circulating blood volume, leading to cardiac insufficiency, is why every brief period spent walking or sitting, every conversation and every exposure to light or noise can affect M.E. patients so profoundly. Seemingly minor 'activities' can cause significantly increased symptom severity and/or disability (often with a 48-72 hour delay in onset), prolonged relapse lasting months, years or longer, permanent bodily damage (eg. heart damage or organ failure), disease progression or death.
         If activity levels exceed cardiac output by even 1%, death occurs. Thus the activity levels of M.E. patients must remain strictly within the limits of their reduced cardiac output just in order for them to stay alive.
         M.E. patients who are able to rest appropriately and avoid severe or prolonged overexertion have repeatedly been shown to have the most positive long-term prognosis.

  • Myalgic Encephalomyelitis is a testable and scientifically measurable disease with several unique features that is not difficult to diagnose (within just a few weeks of onset) using a series of objective tests (eg. MRI and SPECT brain scans). Abnormalities are also visible on physical exam in M.E.

  • Myalgic Encephalomyelitis is a long-term/lifelong neurological disease that affects more than a million adults and children worldwide. In some cases M.E. is fatal. (Causes of death in M.E. include heart failure.)

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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To download other papers from this site, see the Document Downloads page.

Permission is given for this document to be freely redistributed by e-mail or in print for any not-for-profit purpose provided that the entire text (including this notice and the author’s attribution) is reproduced in full and without alteration. Please redistribute this text widely.

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The book 'Caring For The M.E. Patient' by Jodi Bassett includes a Foreword by international M.E. expert Dr Byron Hyde.

He writes:

"There is so much false information that is picked up and disseminated it is near impossible to hold one’s head above the water and sift through this morass of misinformation. Any attempt to seek the truth is always a major difficulty. Somehow, Jodi Bassett and Hummingbird have managed to plow through this field of weeds."

"This is a book that deserves being read, not only by patients and physicians with an interest in M.E. but the bureaucrats in the USA Centers for Disease Control who have done so much damage to the understanding of M.E. I recommend her book to all and wish it every best success."

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