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.

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.

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 your 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.)

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

-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.

-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.

-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).

-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.

-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.

-Sensory input includes; light, noise, movement, touch and also vibration. (The vibration felt when by travelling by car can be excruciating. Even being lifted from one bed to another can be unbearable.)

-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. 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.)

-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.

-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 eat every 2 or 3 hours (or even more often) and that meals or snacks be 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.

-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)

- 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.

-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.

-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.)

-Don’t make superficial (i.e. wrong!) 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 long-term prognosis.)

-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.

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.

• 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.
• 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, or for the patient to still not have regained their previous low-level of health 5 or more YEARS later. 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.
• What is Homeostasis? Homeostasis is the property 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 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 enables 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 that: ‘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 (etc.); there is ‘cell field shutdown’ to prevent the death of the cell. See: Treating Myalgic Encephalomyelitis - Avoiding Overexertion for more information and for references.
• What does ‘rest’ mean exactly? Resting means completely different things at different severity levels. For the mildly ill being at rest 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 things 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 inputs 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 or too cold. For the very severely ill a better term would be complete incapacitation, rather than 'resting.' The term resting also implies that the inactivity is optional and this is often not the case in the severely ill who are often 'resting' (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 and concepts of pacing or of stopping activities when symptoms appear are useless unfortunately and 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 very common in M.E. unfortunately.
• Try not to make superficial judgements of ability or severity! You 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. But M.E. is not one of those illnesses. Observing your average M.E. sufferer for an hour – or even a week or more – will not give an accurate indication of their usual daily activity level because the severity of M.E. waxes and wanes throughout the hour/day/week and month and people with M.E. can sometimes operate significantly above their usual 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 of symptoms are very often also significantly delayed.
       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 tasks, this may involve hours, weeks or months. (Someone may need 2 weeks rest before an outing for example, and may then spend 3 weeks extremely ill afterwards recovering from it; so just looking at 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 very often does not even begin until 48 or more hour afterwards (when most observers are long gone) you also can’t tell by looking if a particular activity was so far beyond a M.E. patient’s individual limits that they will end up having made themselves severely or even permanently more ill by completing the task. (Or even if it killed them, to be blunt. It isn’t common, the M.E. death rate is estimated at 3%, but deaths can and do occur.)

Name:

Date:

(Patient note: Once you've printed it out, 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.

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 are 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.

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 only do well in a very narrow range of temperatures, slightly cold or warm weather makes me ill
• Cold weather increases the problems with my joints and my pain levels.

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)
• I need to avoid the following foods:
• I need my food cut up for me sometimes/often/always
• I require assistance to eat some/most /all meals.
• I require a low Glycaemic Index diet (foods which release carbohydrate slowly).
• I require a low Glycaemic Load diet (foods which are low in carbohydrate).
• I require liquid meals/tube feeding.
• Due to difficulties eating / swallowing, I need to avoid foods like:

Other notes on diet:

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:
• I have problems with many different medications.
• I have a problem with almost every medication, so far I can't take anything at all.
• I can take a variety of over-the-counter vitamins and herbs, but tend to have more problems with prescription drugs (particularly those which act on the CNS).
• Please read the paper Anaesthesia and M.E. before I have my operation so that you are aware of some of the things to look out for with regard to anaesthesia and M.E.

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:

• Insomnia / broken sleep.
• Reversed sleep/wake cycle (I usually go to sleep at and wake at )
• I have sleep paralysis: occasionally/ often /always, it usually lasts for
• I sleep very lightly and need things to be as quiet as possible while I sleep.

Notes:

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. 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.ahummingbirdsguide.com

(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.)

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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.

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 MD. and Dr. Elizabeth Dowsett MD. in particular – do not exist.

Between Dr Byron Hyde MD. and Dr. Elizabeth Dowsett MD. – and their mentors the late Dr John Richardson MD. and Dr Melvin Ramsay MD. (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 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 – by a well-read layperson – purely 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.

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.