**Why patients with severe M.E. are housebound and bedbound** - Part 1

[Guest guest]

**Why patients with severe M.E. are housebound and bedbound**

by Jodi Bassett,

2008

_http://www.ahummingbirdsguide.com/houseboundandbedbound.htm_

(http://www.ahummingbirdsguide.com/houseboundandbedbound.htm)

 

Knowledge of some of the basics of how M.E. affects the body and the

limitations of each patient are vital if you provide care for someone with M.E.

This

knowledge is also necessary even if you make comments or have any type of

input into the way the disease is managed, in order to avoid additional

unnecessary suffering and disability.

 

This is so important with M.E. because inappropriate care, comments and

advice or pressure for M.E. patients to do certain things (even if well

intentioned) can have serious consequences for the patients in the short term

and the

long term, or even permanently.

 

This paper provides a brief overview of this topic for friends and family

members, and also for carers, doctors or hospital staff.

 

 

So why are some severely affected M.E. patients housebound?

 

This is a question that severe M.E. patients are sometimes asked. The short

answer to this question is:

 

a. They are simply too ill and disabled to leave the house. This task is

physically impossible for them due to the severity of their illness, or:

 

b. They are physically able to leave the house, but it would be unwise for

them to do so. In the short term this type of overexertion causes even more

severe suffering than is already experienced daily (and may already be at an

unbearable level). Even worse, this extreme additional loss of quality of life

and ability can and does persist for a long time afterward.

 

It is very common for severely affected patients to spend 2 months, 6

months, 12 months or even several YEARS or longer recovering from a hospital

trip

(etc.). For example, some patients still have not regained their previous very

low-level of health 2 or 4 years after a trip to hospital. Some never do

recover, and for some patients the overexertion is so severe as to be fatal.

 

Severe overexertion also ruins a patient's chances for significant (or any)

future recovery, and can cause permanent physical damage.

 

 

Severely affected M.E. patients may also sometimes be asked questions such

as:

-- **Why are you bedbound, or wheelchair-bound?**

-- **Why are you almost completely housebound or bedbound?**

-- **Why have you had to stop studying or working?**

-- **Why can't you do all the tasks of daily living for yourself?Z**

-- **Why can't you use the phone, or watch TV?**

 

The answer to each of these questions is the same, it*s just a difference of

degree. Some tasks are physically impossible for some sufferers, and others

are possible but unwise. Sometimes tasks can be done in a controlled way, and

limited as to frequency and/or duration. In other words, the activities need

to be carefully *rationed.*

 

That is really all there is to it. A person with M.E. doesn*t do certain

things they would like to do (or are desperate to do), because they are either

too ill to do them, or because they would loose a big chunk of what little

quality of life and ability to do things they have left for months or years or

longer afterward, or lose any chance at significant recovery if they did

them....or because they don*t want to be in agonising pain and then die because

they pushed themselves to do something that their severely damaged bodies

couldn*t cope with.

 

That is the short answer. If you'd like more detail on all of these points,

and some more M.E.-specific medical information and treatment and management

guidelines however, then please read on.

 

 

What is Myalgic Encephalomyelitis? How does it affect the body?

 

Myalgic Encephalomyelitis is a debilitating neurological (CNS) disease which

has been recognised by the World Health Organisation since 1969 as a

distinct organic neurological disorder with the code G.93.3. It can occur in

both

epidemic and sporadic forms and over 60 outbreaks of M.E. have been recorded

worldwide since 1934.

 

M.E. is an acute onset neurological disease initiated by a virus (an

enterovirus) with multi system involvement which is characterised by post

encephalitic damage to the brain stem (hence the name *Myalgic

Encephalomyelitis*).

 

M.E. is similar in a number of significant ways to diseases such as multiple

sclerosis (MS), Lupus and Polio.

M.E. can be extremely disabling; at least 25% of M.E. sufferers are

severely affected and are almost completely (or completely) housebound and/or

bedbound. Children as young as five can get M.E., as well as adults of all

ages.

M.E. has a similar strike-rate to MS and is a (potentially fatal)

chronic/lifelong illness.

 

M.E. is primarily neurological, but because the brain controls all vital

bodily functions virtually every bodily system can be affected by M.E. Although

M.E. is primarily neurological it is also known that the vascular and cardiac

dysfunctions seen in M.E. are also the cause of many of the symptoms and

much of the disability associated with M.E. - and that the well-documented

mitochondrial abnormalities present in M.E. significantly contribute to both of

these pathologies. There is also multi-system involvement of cardiac and

skeletal muscle, liver, lymphoid and endocrine organs in M.E.

 

Thus Myalgic Encephalomyelitis symptoms are manifested by virtually all

bodily systems including: cognitive, cardiac, cardiovascular, immunological,

endocrinological, respiratory, hormonal, gastrointestinal and musculo-skeletal

dysfunctions and damage. Myalgic Encephalomyelitis affects the brain, the

heart, almost every bodily system and every cell of the body. One of the

defining

features of M.E. is an inability to maintain homeostasis.

 

All of this is not simply theory, but is based upon an enormous body of

mutually supportive clinical information. These are well-documented,

scientifically sound explanations for why patients are housebound or bedridden,

profoundly intellectually impaired, unable to maintain an upright posture and

so on

(Chabursky et al. 1992 p. 20) (Hyde 2007, [Online]) (Hyde 2006, [Online])

(Hyde 2003, [Online]) (Dowsett 2001a, [Online]) (Dowsett 2000, [Online])

(Dowsett 1999a, 1999b, [Online]) (Hyde 1992 pp. x-xxi) (Hyde & Jain 1992 pp. 38

-

43) (Hyde et al. 1992, pp. 25-37) (Dowsett et al. 1990, pp. 285-291) (Ramsay

1986, [Online]) (Dowsett & Ramsay n.d., pp. 81-84) (Richardson n.d., pp.

85-92).

 

What all of this means in practice is that patients with M.E. have to be

very careful with, or limit:

- 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:

 

a. People with M.E. are unable to maintain their pre-illness activity

levels. This is an acute (sudden) change. M.E. patients can only achieve 50%,

or

less, of their pre-illness activity levels post-M.E.

 

b. People with M.E. are limited in how physically active they can be but

they are also limited in similar way with; cognitive exertion, sensory input

and

orthostatic stress.

 

c. When a person with M.E. is active beyond their individual (physical,

cognitive, sensory or orthostatic) limits this causes a worsening of various

neurological, cognitive, cardiac, cardiovascular, immunological,

endocrinological, respiratory, hormonal, muscular, gastrointestinal and other

symptoms.

 

d. The level of physical activity, cognitive exertion, sensory input or

orthostatic stress needed to cause a significant or severe worsening of

symptoms

varies from patient to patient, but is often trivial compared to a patient*s

pre-illness tolerances and abilities.

 

e. The severity of M.E. waxes and wanes throughout the hour/day/week and

month.

 

f. The worsening of the illness caused by overexertion often does not peak

until 24 - 72 hours (or more) later.

 

g. The effects of overexertion can accumulate over longer periods of time

and lead to disease progression, or death.

 

h. The activity limits of M.E. are not short term: a gradual (or sudden)

increase in activity levels beyond a patient's individual limits can only cause

relapse, disease progression or death in patients with M.E.

 

i. The symptoms of M.E. do not resolve with rest. The symptoms and

disability of M.E. are not just caused by overexertion; there is also a base

level of

illness which can be quite severe even at rest.

 

j. Repeated overexertion can harm the patient's chances for future

improvement in M.E. M.E. patients who are able to avoid overexertion have

repeatedly

been shown to have the most positive long-term prognosis.

 

k. Not every M.E. sufferer has 'safe' activity limits within which they will

not exacerbate their illness; this is not the case for the very severely

affected.

 

 

In short, if patients with M.E. exceed their individual physical, cognitive,

orthostatic and other limits, they will experience some combination of the

following:

 

- 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 lost entirely. Painstaking gains made slowly over many

months

or years may also be lost.)

 

It is also important to be aware that repeated or severe overexertion can

also result in the death of the M.E. patient. (Death in M.E. is most often

caused by heart failure or multiple organ failure.) (Bassett, 2008, [Online])

 

For these reasons, it is vitally important that patients are allowed to

judge for themselves how much activity it is safe and wise for them to attempt.

Patients are the best judges of their own limits, and patients' judgements

must not be over-ruled. Patients should never be advised, encouraged or forced

to be more active than their severely damaged bodies can handle; these

decisions cannot safely or ethically be made by any third party.

 

 

What are the problems for severe M.E. patients being out of their bed or

home?

 

**How is the M.E. patient being overexerted and made more ill if they are

transported somewhere while lying down?** or

**how can just a few minutes or hours out of bed possibly make the patient

more ill long-term?**

a healthy person might ask.

 

It is common for people dealing with M.E. patients to pay close attention to

the fact that a patient with M.E. has to limit physical overexertion, but to

not fully understand that excessive sensory input and cognitive exertion and

other factors can make the patient just as ill as excess physical activity.

These factors are also often much harder to minimise.

For example:

 

-- It is impossible to avoid additional cognitive stimulus during a trip out

of the house. Whether it is looking at new environments, or having to listen

to speech or being asked to answer questions and make decisions or just

being asked to speak at all, all of these things can be unbearable for the

severe

M.E. patient and cause severe problems in the short and long term.

 

-- Sensory input such as excessive (or even low level) noise, light and even

vibration or a sense of movement (as felt when travelling by car or

ambulance) can be unbearable and extremely painful for the severe M.E. patients

and

cause severe problems. 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. Travelling by car is excruciating with severe

M.E. and can cause a severe and prolonged, or permanent, worsening of

neurological, cardiac and other problems. It can also cause death (see

section/question 1 below).

 

Note too that travelling by car causes relapse even if light, noise and

vibration are minimised as much as possible. The problem isn*t just excess

sensory input. Even then, as one M.E. patient explains it, it is also the

exertion

of movement through space that leaves severe M.E. patients *in a coma-like

state* and feeling as if they*re *going into total organ failure* (and so on)

during and after travelling.

 

- A patient*s inability to be upright for any amount of time can be very

severe. Often trips out of the house , even where a patient is transferred by

bed almost entirely, still require a patient to sit up for short periods which

can be unbearable for the severe M.E. patient and cause severe problems in

the short and long term. Even sitting up in bed propped up by a few pillows

counts as *being upright* when someone is severely affected, and even a few

minutes of being upright may be long enough to cause very severe problems;

including cardiac failure.

 

- Exposure to slightly warm or cool temperatures can also cause sometimes

severe problems (as patients with M.E. have a loss of thermoregulation).

 

- Exposure to chemicals in new environments (from common personal care

products worn by others, to 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.

 

- Patients with M.E. often also have very restricted diets (due to digestion

problems, food allergies and intolerances etc.), and problems with going for

even a few hours, or more than half an hour in some cases, without food (as

with other patients with severe metabolic/mitochondrial disorders). There is

also a need to have continual access to adequate water. Trips out of the

house that don*t accommodate these needs can make the patient very ill.

 

 

So as you can see, merely protecting the patient from physical overexertion

is not enough by itself to make an activity safe for a M.E. patient. It is

more complicated than that unfortunately.

 

One of the main misconceptions is that while walking a few steps must of

course require additional bodily resources and additional cardiac output, time

spent thinking, looking, listening or experiencing other sensory stimuli does

not. But this is not the case.

 

Not only physical effort, but also cognitive effort, requires additional

resources which an M.E. patient may not have. The brain contains some 100

billion neurons connected to some 10,000 relay stations and this enormous

electrical activity creates a massive need for energy and other bodily

resources. The

brain uses up to 25% of the entire body's demand for glucose, 25% of the

blood pumped from the heart goes to the brain and the brain also needs 25% of

the body*s oxygen supply. (Blood supplies nutrients like glucose, protein,

trace elements, and oxygen to the brain.) So of course, every extra second of

*electrical activity* - every thought, every feeling, every noise heard or

sight

seen - requires additional cardiac output, makes additional oxygen and

glucose demands, and so on, in just the same way as does a physical activity

such

as walking; if not more so.

 

So in addition to physical activity, the list of things that can cause

similar severe relapse in M.E. patients also includes cognitive exertion,

sensory

input and orthostatic stress. Anything that makes the body work harder or

have to adjust in some way, in effect (Dowsett n.d. d, [Online]).

 

Again, that is why hospital trips (or any travelling out of the house)

should be an absolute last resort for patients with severe M.E. and should be

avoided wherever possible. Requiring patients with severe M.E. to go to

hospital

(etc.) is like making a person with two freshly broken legs walk for 5 hours

to get medical help. It*s as counter-productive and cruel as it is

agonisingly painful.

 

People with severe M.E. are some of the most vulnerable members of society

and they deserve and desperately need appropriate care; care given in the home

as much as possible. It is unreasonable that these already very severely ill

patients have to be made so much more severely ill to get the basic care

they need, most of which could easily be administered at home at an immensely

reduced physical cost to the patient.

 

 

Advice for carers

 

If there is a genuine need for a trip out of the house there are things that

can and must be done to help minimise the harm caused. So what are the top

10 most obvious things that need to be considered by anyone providing care to

a M.E. patient on a daily basis, whether at home, in transit or during a

short trip to hospital?

 

- Reduce exposure to light

- Reduce exposure to noise

- Reduce/eliminate all non-essential visitors

- Do not encourage patients to be more physically active (or upright longer)

than they can easily tolerate

-Try to schedule demanding tasks for the patient's best time of day as much

as is possible

-Try to reduce the patient's levels of cognitive exertion and sensory input

- Be aware of any special dietary requirements

- Be aware of the likelihood of negative drug reactions

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

- Be aware that these aforementioned relapses can be delayed, and that they

can be very serious and prolonged

 

Each of these points is expanded upon in the text:

Hospital or carer notes for M.E.

 

Please see this text for more information. (This paper and Hospital or carer

notes for M.E. can also be downloaded together.)

 

It's a lot to take in all at once, but everything that you can do to reduce

the relapse from a hospital stay - or even better, avoid a hospital stay etc.

completely - will make a real difference and be much appreciated. Just do

your honest best. There is a huge difference between a 2 month long relapse and

a 6 month relapse and between symptoms worsening during this time to a 7/10

or 8/10 level rather than a 9/10 or 10/10 level; or between a relapse that

merely lasts weeks or months, or is semi-permanent or permanent.

 

(M.E. patients appreciate what a hassle it is to accommodate the demands of

M.E. only too well. M.E. is an acute onset disease. Those of us who have M.E.

went from being normal and healthy one day to having to cope with all these

limits and disabilities the next, or from one hour to the next even. M.E.

patients get it that M.E. is very unforgiving, overwhelming and just a huge

hassle to deal with on just about every level; we think so too. But this doesn't

change the reality, unfortunately.)

 

 

In conclusion

 

Some tasks are physically impossible for some M.E. sufferers, and others are

possible but unwise. Sometimes difficult tasks can be done so long as it is

in a controlled way; and strictly limited as to frequency and/or duration.

Another way to say this is that some activities need to be very carefully

*rationed.* In addition, some tasks are only possible at the patient*s best

time

of day, or with a period of rest beforehand (lasting minutes, hours or days or

longer) or can only be completed if the task is modified in some way, or

with assistance from a carer.

 

Activities that would be trivial for healthy people - including being out of

bed or leaving the house for brief periods - can have disastrous

consequences for patients with severe M.E. Consequences can include extremely

severe and

prolonged relapses, severe additional disability and suffering, permanent

bodily damage and death.

 

Again, it is vitally important that M.E. patients are allowed to judge for

themselves how much activity it is safe and wise for them to attempt. Patients

are the best judges of their own limits, and patients* judgements must not

be over-ruled. Patients should never be advised, encouraged or forced to be

more active than their severely damaged bodies can handle; these decisions

cannot safely or ethically be made by any third party.

 

If a patient says they cannot or should not do something: then family,

friends, doctors, carers and hospital staff must listen.

 

Thank you for taking the time to read this paper.

--------

 

_http://www.ahummingbirdsguide.com/houseboundandbedbound.htm_

(http://www.ahummingbirdsguide.com/houseboundandbedbound.htm)

 

(See this link to read the extra question and answer section of this paper

and to download Word or PDF copies of this text.)

 

Please link to this paper using the above link only as only this page will

be updated.

 

Best wishes, Jodi Bassett

--

A Hummingbirds Guide to Myalgic Encephalomyelitis:

_www.ahummingbirdsguide.com_ (http://www.ahummingbirdsguide.com)

--

**I had no way of talking about what was happening, not only because I

developed language-retrieval problems, but because there was no accurate

symptomatic vocabulary.... I became incommunicado, and many people did simply

assume

the worst, approaching me with suspicion, refusing to utter the name of my

diagnosis, and experiencing shame, along with me, for standing up for my rights

in public. This illness does not befit exhibitionistic martyrs, as some might

think, It is generally, rather, a lonely and private agony.**

From the book *Stricken* edited by Peggy Munson

 

(http://www.papercut.biz/emailStripper.htm)