25 % Severe M

25 % Severe M.E. Group

Carer's Pack - updated Jan 2010

Part 1 :

Who are we ?

There are almost 6 million carers in the UK today.

One in ten adults in the UK is a carer.

13 million people can expect to become carers in the next decade.

Over one in five or 1.2 million - carers spends over 50 hours a week on their caring responsibilities.

42% of carers are men.

The peak age for caring is 45-64. 20% of adults in this age group provide care.

Of the 15.2 million employees aged 16-74 in full-time work, 1.6 million provide at least some unpaid care 144,000 provide 50 or more hours a week.

More than 80% of carers say that caring has had an adverse impact on their health.

It is estimated carers save the country / Government 87 billion each year yet the decision to care can mean a commitment to future poverty. Many give up an income, future employment prospects and pension rights to become a carer.

The Princess Royal Trust for Carers supports over 400,000 carers through 144 Carers Centres throughout the UK.

Young carers:

The 2001 Census indicated that there are 175,000 young carers aged under 18 in the UK today. However, a poll commissioned by The Princess Royal Trust for Carers in 2004 indicates that the number of young carers could be much higher.

Over 13,000 care for over 50 hours per week.

Young carers may look after relatives with a range of issues, including mental or physical illness, disability or alcohol or substance misuse.

The average age of a young carer is 12.

The lives of young carers are in some way restricted because of the need to take responsibility for the care of a person.

Almost 1/3 of young carers have educational difficulties. Many young carers miss days off school to care for someone. Some leave school with no qualifications. Most experience bullying and isolation from their peers.

The Princess Royal Trust for Carers supports approximately 25,000 young carers through 85 young carers services throughout the UK.

Scotland FactsAdult carers:

There are an estimated 600,000 carers in Scotland today

100,000 carers are caring for more than 50 hours every week

One in eight people in Scotland is a carer.

80% of the care provided in Scotland is provided by unpaid carers at home

It is estimated carers save Scotland / the Scottish Executive 7.68 billion each year yet the decision to care can mean a commitment to future poverty. Many give up an income, future employment prospects and pension rights to become a carer.

The Princess Royal Trust for Carers supports over 50,000 carers in Scotland through 29 Carers Centres reaching from Orkney to the Borders.

Young carers:

There are 100,000 young carers in Scotland, according to a 2004 survey of young people in Scotland by the Scottish Government.

One in every twelve secondary school children is a young carer

The Princess Royal Trust for Carers supports 3,500 young carers through 49 young carers services throughout Scotland.

Wales/Cymru FactsAdult carers:

There are an estimated 356,000 adult carers in Wales today.

90,000 carers in Wales spend over 50 hours a week on their caring responsibilities.

Carers currently provide over 70% of community care in Wales.

It is estimated carers save the social economy of Wales 3.5 billion each year yet the decision to care can mean a commitment to future poverty. Many give up an income, future employment prospects and pension rights to become a carer.

The Princess Royal Trust for Carers supports over 8,500 carers in Wales through 12 Carers Centres reaching from Cardiff to Anglesey.

Young carers:

The 2001 Census estimated that there are 4,600 young carers aged under 18 in Wales.

The Princess Royal Trust for Carers supports over 240 young carers through 2 young carers services throughout Wales.

CARERS IN CRISIS :

A 2008 survey of over 1,700 carers showed:

86% say their financial position is worse than 12 months ago.

74% are struggling to pay essential utility bills.65% are living in fuel poverty (spending more than 10% of their income on fuel).

52% are cutting back on food to make ends meet.

66% are spending their own income or savings to pay for care.

32% of those carers paying rent or a mortgage say they cannot afford to pay it.

24% are cutting back on essential car journeys e.g. to go food shopping, visit the doctor.

54% are in debt nearly a third of these owe more than 10,000 and many are resorting to bank verdrafts and credit cards.

Main recommendations:

The UK Government should publish a plan and timetable for ensuring that its 2018 vision that no carer falls into financial hardship because of their caring role, as promised in the National Carers Strategy, becomes a reality.

The UK Government must urgently review and overhaul Carers Allowance and other benefits for carers.

Carers not a priority in NHS framework

Carers will be hugely disappointed that the Government has yet again failed to make supporting carers a priority for the NHS.

The NHS Operating Framework for 2010-11, the Governments document that tells the NHS what to concentrate on, retains supporting carers as a Tier 3 priority rather than moving it up to Tier 1 or 2. That carers are in Tier 3 was seen as a major cause of Primary Care Trusts (PCTs) not using their 50m allocation from the Carers Strategy to support carers this year.

Responding to the Frameworks publications both Carole Cochrane, Chief Executive of The Princess Royal Trust for Carers and Anne Roberts, Chief Executive of Crossroads Care, pledged to respond by campaigning directly to the NHS.

Carole Cochrane advised: We produced a major report that showed PCTs did not use the 50m allocated to them to support carers and that a huge majority wanted more guidance from Government to implement the Carers Strategy. Carers and many charities have been calling for this too so a lot of people will feel let down and frustrated by this Operating Framework.

"Implementing the Carers Strategy is vital for millions of carers in England so we will find other means to persuade the NHS that supporting carers is not only morally right, but will also help them provide better care, smoother hospital discharges and reduced re-admissions. We will continue to work with the Department of Health to identify poor-performing PCTs and to help the NHS learn from those that are doing well.

Anne Roberts commented: For ten months, we have been producing evidence that PCTs are not implementing the Carers Strategy and that a key factor in this was a lack of strong guidance from Government to the NHS. This years Framework proved to be ineffective in guiding PCTs, and we are afraid that next years will not do enough to ensure PCTs use the 100m allocated to them in 2010/11 to support carers. We will use Freedom of Information requests to establish whether there has been any progress on last year.

Facts about caring

Many carers say they feel ignored and invisible and have to constantly battle for the most meagre of services. The social care system is seriously underfunded and in crisis. This has devastating consequences for disabled people and a knock on effect for carers who have no option but to fill the gap. Many carers are outside the social care system and get no help whatsoever. The publics expectations of what the state will provide should a person require care are widely different from the harsh reality. Carers are being short changed by a system that doesnt recognise their contribution to society.

Carers UK is working to create a world where carers are fully valued for their contribution and get the help they and their loved ones need

1 in 8 adults (around six million people) are carers.

By 2037, it's anticipated that the number of carers will increase to 9 million

Every day another 6,000 people take on a caring responsibility - that equals over 2 million people each year.

58% of carers are women and 42% are men

Over 1 million people care for more than one person

Carers save the economy 87 billion per year, an average of 15,260 per carer

Over 3 million people juggle care with work, however the significant demands of caring mean that 1 in 5 carers are forced to give up work altogether.

The main carer's benefit is 53.10 for a minimum of 35 hours, equivalent to 1.52 per hour - far short of the national minimum wage of 5.73 per hour

People providing high levels of care are twice as likely to be permanently sick or disabled

625,000 people suffer mental and physical ill health as a direct consequence of the stress and physical demands of caring.

1.25 million people provide over 50 hours of care per week

Part 2 :

Carers & Severe ME.

The ME sufferer faces , in the words of MP Tony Wright, a

double burden : "They must cope with an illness that to a

great extent destroys their lives and suffer the prejudice

and ignorance that has followed the illness around."

The suffering hour to hour, is relentless. One study, for

example, has suggested that patients with this condition

had more dysfunction than those with multiple sclerosis,

and that in ME/CFS the degree of impairment is more

extreme than in end-stage renal disease and heart disease.

Hopefully, following publication of the Chief Medical

Officer's Report, the situation will begin to improve; as the

report states :"inaction due to ignorance or denial of the

condition is not excusable.

Why ?

(Dictated by Linda Crowhurst)

I want you to imagine what it is like to have severe, neurological ME. I want you to try and think what it must be like to experience constant ongoing physical pain, all over your whole body. Pain that throbs, pain that stings, pain that itches and irritates, burns and moves, pain that invades your muscles, your skin, your scalp, your feet your eyeballs, your tongue, your intestines, so that there is no part of you experiencing any respite from pain, any second of the day or night, in fact the pain increases in intensity and agony every time you try to rest or sleep.

I want you to try and imagine muscle paralysis that invades you, so that when you awake you can no longer speak, move your lips open your mouth, open your eyes, move your fingers, feel your hands or your arms, your feet, your toes, your legs.

I want you to imagine what its like to desperately need to go to the toilet but to be unable to move, to be unable to sit or stand, to be unable to walk but worse than this to be unable to bear to be touched,so that even if there is someone to move you, to lift you. to stand you up, to sit you in a wheelchair, to push you to the bathroom, you cannot access this help, day upon day, year upon year . for hours on end.

I want you to imagine the physical torment of hyperacusis, of being so hypersensitive to noise that a whisper sounds like a shout and that any loud noise feels like a physical assault not just on your ears and your head but on your whole body.

I want you to imagine the ordinary things of life becoming completely inaccessible because you have no energy, you cannot breathe easily or fully, you cannot eat so many different foods because of allergy and sensitivity. you cannot be in the same room as people because they drain you of any energy you might have had and their voices hurt you and you become more ill if you try to engage with them.

I want you to imagine a life where the TV hurts your eyes, where the computer screen hurts your eyes, the sunlight, even the normal daylight, without bright sun, hurts your eyes and gives you severe eye pain and a head pain that goes on and on for days on end. A life where the telephone hurts you to hold it, to hear it and where your brain is unable to process any incoming information rendering conversation impossible.

I want you to imagine being unable to read because your brain simply is unable to comprehend the mass of information before you; of being unable to imagine , even, because the fog has descended inside your head that blanks out thought and creativity ability.

This is only a portion of the reality of having severe ME.

Now I want you to think what it must be like to know that despite this severe disability, this chronic unending illness, there is no biomedical consultant provided to treat you , there is no apparent awareness of the urgent need to do something to physically help you. There is no NHS service offering appropriate biomedical tests or treatments despite the fact there are very serious physical abnormalities in your body and every time you ask for help you are sidelined, every time you try to raise awareness it doesn't make any difference.

Can you begin to imagine what it feels like to be fobbed off instead with a biopsychosocial, therapy-led service (pretending to be biomedical) that does not meet the complex medical needs of this disease , when all the PCT has to do is say Yes, we will take you seriously , we acknowledge responsibility for your biomedical care and we can see that you need a local consultant and it is not unreasonable to expect one; so yes, we will provide you with a new innovative biomedical service that might just begin to meet your needs..

And we will lead the way.

Please tell me why this is not happening ?

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 debilitatingneurological (CNS) diseasewhich has been recognised by the World Health Organisation since 1969 as a distinctorganic 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 patients 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 - 48 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 patients 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 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 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 patients 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 doesnt 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 patients best time of day is, and try to fit tasks in to that window as much as possible.

-Dont 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 isnt 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 dont 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 patients 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 patients 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 arent 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 doesnt 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

-Dont make superficial judgements of a patients ability levels. If you want to know how a patient is feeling or if they can or cant 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 patients 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, its 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 doesnt 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.

Part 3 :

Entitlements

As a carer you may be able to claim several benefits. There are three main types:

Earnings replacement benefits,paid because you're not in paid employment.

Benefitsthat compensate for extra costs, such as those relating to disability or having a child.

Benefits and tax creditsthat top up low income.

You may be entitled to one of four means-tested benefits. If you're entitled to more than one, call the benefit enquiry line (0800 882200) for help . The benefits are:

Income Support. This is paid to people under 60 if they're in one of the groups of people who can claim, such as carers or lone parents. It can also help with the interest-only part of your mortgage payments.

Income-related Employment and Support Allowance. This is a new benefit paid to people under 65 who have a limited capacity for work because of ill health or a disability. It can also help with the interest-only part of your mortgage payments.

Income-based Jobseekers Allowance. This is paid to people who are actively seeking work. It can also help with some mortgage payments.

Pension Credit. This has two parts: the guarantee credit, which is paid to peopleaged 60 and over to top up their income, and the savings credit, whichis paid to people aged 65 and over and rewards them for having some savings. Pension credit can also help with some mortgage payments.

In addition to one of the means-tested benefits from the four above, you may also be able to claim one of these means-tested benefits:

Housing Benefit. This is paid to people who pay rent and have a low income.

Council Tax Benefit. This is paid to people who are liable for Council Tax and have a low income.

Carers Allowance is the main benefit for carers.

Carers Allowance is not means-tested and does not depend on

National Insurance contributions.

Carers Allowance is 53.10 per week this year.

Carers Allowance is a taxable weekly benefit that can be paid to someone if they are caring for a disabled person for at least 35 hours per week.

The disabled person must be getting a qualifying disability benefit - this includes disability living allowance at middle or high-rate of the care component or any rate of attendance allowance.

You cannot get Carers Allowance if you earn more than 95 per week (once allowable deductions have been made, for instance income tax)

You cannot get Carers Allowance if you are in full-time education (21+ hours of supervised study).

Carers Allowance comes under the 'overlapping benefit' rules, which means that if you are already receiving certain non-means-tested benefits you might only have an underlying entitlement to Carers Allowance.

If you are awarded Carers Allowance, you should also look to see if you can get means-tested benefits as well - working age carers should look into Income Support and pension age carers Pension Credit. But both age groups should also look into the possibilities of claiming Housing Benefit and Council Tax Benefit

Very important - the claiming of carers allowance can have an adverse affect on the disabled persons benefit entitlement.

The best advice to both carers and the disabled person is seek some expert, independent benefits advice from an organisation that fully understands carers' benefits issues.

As a carer you have specific legal rights and entitlements. Knowing your rights can help you to get the support that you need.

These rights for carers include:

The right to have your needs assessed by your local authority :

Your right to an assessment

Your right to an assessment of your needs is set out in the Carers and Disabled Children Act 2000. This says that all carers aged 16 or above, who provide a regular and substantial amount of care for someone aged 18 or over, have the right to an assessment of their needs as a carer.

This is provided by the social services department of your local authority as a way to see if they can offer any support to aid you in your caring role.If there is more than one carer providing regular care in your household, you are both entitled to an assessment.The local authority has a responsibility to make sure a young carers own wellbeing is looked after and that they receive the necessary support. So, a 16- or 17-year-old who cares for someone, even for a limited period, may be entitled to an assessment.If you are a parent or have responsibility for a disabled child, your needs as a carer are assessed under The Children Act 1989. You have the right to a family needs assessment. You do not need to be the mother or father of the child.

The Carers (Equal Opportunities) Act

This piece of legislation, which came into effect in April 2005,helps to ensure that carers are not disadvantaged because they are caring for another person. The law can help you in three ways.

Your right to know about assessments

The act makes it a legal requirement for all local authorities to ensure that you are made aware of your right to a carers assessment.

Your right to have your needs considered

The local authority must ask you about your daily activities when undertaking an assessment of your needs. They should find out if you work, if you want to work and whether you do or want to do any education, training or leisure activities. The authority must take all of these issues into account when deciding what services they give you and the person you look after.

Your right to have authorities co-operate on your behalf

Under the act, your local authority must work with other local authorities, education authorities, housing authorities and health service organisations. These authorities must consider a request for assistance from each other if:

alocal authority asks for helpto planservices for carers or the people they care for, or

when the carers role would be enhanced by the services provided by another authority. These services can be for either the carer or the person cared for.

The rightto receive direct payments so that you can chose what services to have :

Carers and direct payments

Direct payments are payments given by a local authority for those who have been assessed as needing help from social services. They can be issued if you are a carer aged 17 or over.They can be used to buy services from an organisation or to employ someone to provide assistance. The direct payments can be used to buy the services that you have been assessed as needing to support you in your caring role. This can be support that may help maintain your health and wellbeing, such as driving lessons, an evening course or a holiday so you can relax and have time to yourself. If you have been assessed as needing domestic help then you are entitled to a direct payment to buy the support services that you need

Scottish carers miss out on Direct Payments because of lack of information

Direct Payments provide users and their carers with a flexible and personal service but a lack of information limits their use across Scotland, according to a new report by The Princess Royal Trust for Carers.

Direct Payments are made by councils to people receiving social care services, instead of the council providing the service directly. Research into the use of Direct Payments in Scotland (and in particular, rural areas) showed that most users and their carers thought they provided a more flexible service than the equivalent local authority service.

The report, which was funded by the Scottish Government and carried out by VSA Carers Centre a network member of The Princess Royal Trust for Carers, looked into the current uptake of Direct Payments in caring situations and how this benefits carers in rurally isolated areas. Its recommendations include:

developing and putting in place a Direct Payments information strategy which sets out accurate, clear and realistic advice

making the administration of Direct Payments simpler

giving local authorities more flexibility in allowing the use of Direct Payments. The report also recommends more training for social workers so that they know how Direct Payments can enhance their clients lives and more promotion of Direct Payments to voluntary organisations.

Direct Payments were introduced in 2001 and by law every local authority has to have a direct payments scheme for adults and children with care needs. Scottish Government statistics from 2001-2008 show a very variable take up of Direct Payments across Scotland.

The report found that the bulk of people (72%) said they had better service for the person they looked after because of Direct Payments rather than using the local authority managed service, 73% of carers said Direct Payments met their needs, and 32% of carers were disappointed about the Direct Payment information they received from professionals when they first contacted them. In addition, carers found that the time it took to get Direct Payments varied from one day to six years.

Examples of the creative use of Direct Payments include a family with a severely disabled daughter who needed to be tube fed. They lived in a rural and remote area where there were few people with the skills to carry this out. A member of staff at a local school was trained to manage the tube feeding so that the girl could attend school. A Direct Payment was agreed one weekend in six to pay for the same school assistant to provide respite by spending the weekend with the girl to enable her family to spend quality time with their other children.

In another example, Direct Payments helped a woman looking after her husband who had dementia. When he became agitated, the familys beloved dog would start barking and jumping around and the woman struggled to cope with them both. She used a Direct Payment to buy a kennel for the garden so that she could put the dog in the kennel when her husband became agitated.

Florence Burke, Director for Scotland of The Princess Royal Trust for Carers, said: The report paints a valuable picture of what is going on with Direct Payments across Scotland. We would urge local authorities and councilors to read the report so that they can move towards providing a more flexible and innovative Direct Payments to clients and their carers.

For more information, please contact Emma Baird on 0141 285 7938 or email: ebaird@carers.org

Rights in the workplace :

Carers and employment rights

Since the Employment Act 2002 became law, working parents of disabled children under 18 have the right to request flexible working arrangements. Furthermore, since April 2007, you also have the right to ask for flexible working if you are a carer of an adult who is a relative or lives at the same address as you.While you have the right to ask for flexible work in these circumstances,it is important to know thatemployers are not bound to grant these requests. However, they must give business reasons for refusing a request for flexible working.Carers also have the right to take unpaid time off work for dependents (the peoplethey care for)inan emergency.

Your NHS rights

Like every other English citizen, you are entitled to expect to be treatedina certain way, as set out under the NHS Constitution. To find out more, visit the NHS rights and pledges page in our section on Choice in the NHS.

(Source : ) http://www.carersuk.org/Newsandcampaigns/Media/Factsaboutcaring

Here's Carers UK's guide to the first ten steps to getting support.

Step one: Remember you're a carer!Recognising yourself as a carer is the very first step to getting the support you need. Many of us do not see ourselves as carers straight away: we are mums and dads, husbands, wives, partners, brothers, sisters, friends and neighbours. We are simply doing what anyone would, caring unpaid for a loved one or friend, helping them through when they are unable to do things for themselves. The fact is that you are also a carer, and there are things that you need to know. No one likes to be labelled, but recognising yourself as a carer can be the gateway to getting a range of help and support.

Step two:Include your family and friendsMany carers turn to family and friends for support, and to help them to take a break from caring. It is important that you do not cope alone, as this can impact on your own health. Speak to family and friends and make sure they know the extent of your caring role. Many family members or friends may not realise the level of care you are providing, they may be embarrased or don't want you to think they are interfering. Other people may be reluctant to ask if you need help in case you get the wrong end of the stick and think they are saying you can't cope! Sadly, some people don't know how to react to illness or disability and they find it awkward, so the onus might be on you to make the moves.

Step three:Tell your GPAlthough there isn't a national register for carers, make sure that you tell your GP that you are a carer, and ask them to write the details on your notes. If your GP has got their act together they will ensure that, as a carer, you receive a regular health check and, if necessary, a flu jab. If they know you are a carer, some GPs offer special flexibility with appointments, or are more willing to make home visits. Carers are usually busy and sometimes don't find time for their own health. A good GP who understands carers can be a gateway to getting all kinds of help, such as counselling, other medical services, and referrals to your local Social Services.

Step four:Tell Social ServicesSocial Services are part of your local council and provide a range of services to carers and people with disabilities. In Scotland they are called Social Work Departments and in Northern Ireland, Health and Social Services Trusts. They should be one of your first contacts, as it is important they know about the person you're caring for. As a carer, you are entitled to a carer's assessment, which looks at your needs and how you, as a carer, can be supported. Social Services can provide replacement care to give you a break, help with aids and adaptations to make life easier or simply be a back up in an emergency. They can also give you cash to sort things out yourself (this is called a Direct Payment)

You can call your local Social Services directly and speak to them about your role as a carer. Alternatively, your GP can refer you. Even if you choose not to have a carer's assessment, it is advisable to let Social Services know that you are a carer, should a time arise when you need urgent assistance.

Step five:Tell people at workAs a working carer, you are likely to need a range of support at different times - from access to a telephone to check on the person you care for, to leave arrangements that work around hospital discharge. Telling work you are a carer is not always an easy step and you might feel it depends on whether your employer is likely to be supportive. Find out, by asking your colleagues, personnel officer or union representative. There may be existing support that you are not aware of, or you may find that your employer is open to exploring ways to support carers. Colleagues can be very supportive, and it may help simply to discuss your situation with someone you can trust at work. You might even find that other colleagues are also carers, and that together you are more able to talk to your employer about ways in which you could be supported. Carers UK has information for employers on how supporting carers can benefit their business. This can help with your case.

Step six:Claim your entitlementsThe benefit system is complex, and many people who are new to caring are unsure what they should be claiming. Many people are put off claiming by means testing or complicated forms, but remember that the benefits system is there to help and you are entitled to claim. There are a number of benefits available to carers, and one of the most important things it to ensure that you have the relevant information. Benefits can also act as a gateway to other help, like Council Tax reductions or help with prescriptions. Carers UK produces a range of information about benefits and our CarersLine is able to carry out a benefits check over the phone. 0808 808 7777 (Wednesdays and Thursdays only, 10am-noon, 2pm-4pm).

Step seven:Find your nearest carers group or centreCarers groups, carers centres, branches of Carers UK - all give support to carers by providing information, arranging social events and giving carers time to speak to other carers about problems or experiences. Many of the carers that we speak to find carers groups a great source of support.

Step eight:Look after yourselfIt is easy to neglect yourself when you are busy caring for someone. However, as a carer it is important that you look after yourself. At the very least, you're not much use to the person you care for if you make yourself ill through caring. Sadly, one in five carers report that their health suffers as a direct result of caring. For example, without proper training carers are especially prone to back problems. Many of the most serious health problems carers suffer from, such as heart disease or mental breakdown, are a direct result of stress. Caring without a break, without proper sleep and without support is extremely stressful. It is important that you recognise this and take it seriously. Remember that a little can go a long way so when you can, try and take some time out to do something for yourself: read a magazine, visit a friend, watch a TV programme or go for a walk.

Step nine:Think about the futureAs hard as it might be to contemplate, there will come a time when you are no longer caring. When caring ends it can be extremely hard. By facing the future and thinking about life after caring you can minimise the shock when the time comes. Many people say that when caring ends they feel adrift, without purpose or direction. Although caring can be all-consuming, it's important that you keep as much of your own life going as you can - work, friends, hobbies and interests.

Step ten:Support Carers UKCarers UK is the voice of carers. We have a successful record of achievement, built over 40 years, because we are made up of carers and former carers. Our members know the reality of caring and give Carers UK the authority and the knowledge to continue to press for change.

New benefit rates 2009

The annual benefits uprating takes effect from April 6th 2009. New rates will be:

Carer's Allowance

2008/9 rate ()

2009/10 rate ()

Carer's Allowance

50.55

53.10

Adult dependant's addition

30.20

31.70

Earnings limit

95.00

95.00

Income Support

2008/9 rate ()

2009/10 rate ()

Single person (25+)

60.50

64.30

Couple (25+)

94.95

100.95

Carer premium

27.75

29.50

Pension Credit

2008/9 rate ()

2009/10 rate ()

Single person

124.05

130.00

Couple

189.35

198.45

Carer addition

27.75

29.50

Disability Living Allowance

2008/9 rate ()

2009/10 rate ()

Care component

Lower rate

17.75

18.65

Middle rate

44.85

47.10

Higher rate

67.00

70.35

Mobility component

Lower rate

17.75

18.65

Higher rate

46.75

49.10

Attendance Allowance

2008/9 rate ()

2009/10 rate ()

Lower rate

44.85

47.10

Higher rate

67.00

70.35

2008/9 rate ()

2009/10 rate ()

State Retirement Pension (Cat A)

90.70

95.25

Appendix 1

Towards the Development of a Severe ME Care Pathway

Greg Crowhurst RNLD PgDip MA

The severely affected people with ME are neglected by healthcare organisations and by the establishment authorities responsible for funding research. Many believe it is only by examining severely affected patients that the true nature of this illness is revealed and treatments and cures will be found.

Invest in ME : The Journal of IiME Vol 3 : 1 Editorial Comment

Introduction :

NICE has not recommended a behavioural modification programme as the only intervention for any other physical disorder for which it has produced a Guideline.

Margaret Williams (2008) Evidence of cardiovascular problems in ME/CFS that NICE disregarded www.meactionuk.org.uk/Cardiovascular.htm

The greatest challenge ME campaigners currently face is to remove ME from its association with generalised fatigue states; the terms fatigue and chronic fatigue were not associated with ME at all until the name was changed from ME to Chronic Fatigue Syndrome (CFS) in 1988 in the US

What defines M.E. is not chronic fatigue but a specific type of acquired damage to the brain.

Jodi Bassett (2009) The ME Symptom List http://www.ahummingbirdsguide.com/themesymptomlist.htm#66003882

Recognised as a specific disease entity by The Royal Society of Medicine in 1978.and by the World Health Organisation since 1969 as an organic neurological disease , ME is currently classified under ICD code G93.3. It cannot be emphasised too strongly that this recognition emerged from meticulous clinical observation and examination (Hooper 2007)

More than 5000 peer-reviewed biomedical articles to date have been published, detailing the disrupted biology of ME :

The top ten biomedical findings in ME :

1) many patients with ME have no diagnosable psychiatric disorder and that ME is not a form of depression, for example Courjaret et al (2009) recently stated that no direct relationship between the chronic fatigue syndrome and personality disorders was shown

(2) there is a state of chronic, low-grade immune activation, with evidence of activated T cells and evidence of genes reflecting immune activation, as well as evidence of increased levels of cytokines;

(3) there is substantial evidence of poorly-functioning NK cells (white blood cells that are important in fighting viral infections);

(4) there is evidence of white and grey matter abnormalities in the brain;

(5) there is evidence of abnormalities in brain metabolism (and evidence of dysfunction of energy metabolism in the mitochondria);

(6) there is evidence of abnormalities in the neuroendocrine system, particularly in the HPA axis but also in the hypothalamic-prolactin axis and in the hypothalamic-growth hormone axis;

(7) there is evidence of cognitive difficulties, especially with information processing, memory and/or attention;

(8) there is evidence of abnormalities in the autonomic nervous system (including a failure to maintain blood pressure, abnormal responses of the heart rate, and unusual pooling of blood in the legs, as well as low levels of blood volume);

(9) there is evidence of disordered gene expression, especially in those genes that are important in energy metabolism and in genes connected to HPA axis activity, to the sympathetic nervous system and to the immune system;

(10) there is evidence of frequent infection with viruses, especially herpesvirus and enteroviruses.

cf. Williams M (2008) A NICE Dilemma ? http://www.meactionuk.org.uk/A_NICE_DILEMMA.htm

Precisely because it ignored this biomedical evidence, precisely because it confused ME with Fatigue and precisely because it did not take into account ICD G93.3 , the NICE Guideline on ME is widely considered as unfit for purpose by patients and the majority of charities :

Reasons for rejection of the NICE guideline by patients :

It deliberately ignored so much evidence about ME.

It fails to grasp the full nature of neurological ME and the implications for management, but also fails to provide adequate guidance for diagnosis. It also recommends widespread use of the psychosocial rehabilitative treatments of CBT (Cognitive Behavioural Therapy) and GET (Graded Exercise Therapy) in spite of reports of harm from ME patients.

It is detrimental to patients and fails to consider the relevant evidence about the illness.

It places undue emphasis on two treatments cognitive behavioral therapy (CBT) and graded exercise therapy (GET) for which the underlying evidence is inadequate and unrepresentative.

It did not consider the aetiology and pathogenesis of the condition this subsequently meant that thousands of papers could not be discussed as part of the process.

It bring us no nearer a cure for this common and debilitating illness, and that so few management options are being offered to NHS patients.

It ignored the international evidence that ME is a biomedical, not psychiatric, disorder, claiming that studying this evidence fell outwith its remit.

It proscribes appropriate testing. Also its stipulation that any vitamin or mineral deficiency must not be corrected by prescription would seem to constitute a real and even life-threatening danger to people with ME

It more accurately describes patients suffering from idiopathic fatigue, as outlined by the WHO at ICD-10-f48: this endangers the lives of extremely ill and severely disabled people whose disease demands a biomedical approach.

.It failed the task that was set. People with ME in England, Wales, Scotland and Northern Ireland urgently require a network of physician led multidisciplinary services based on a biomedical model of causation. Where such services already exist they are much appreciated by patients as was demonstrated at the July 2007 meeting of the ME All Party Parliamentary Group at Westminster. They do not want a network of services that offer little more than CBT and GET.

Although the recent Judicial Review ruled in NICEs favour , the level of concern raised not just by patients but professionals about the Guidelines irrelevance to neurological ME is breathtaking :

Association of British Neurologists: it almost seems that a select group of psychiatrists with a polarised view of this complex condition is directing the development of the guideline from behind the scene

Association for Psychoanalytic Psychotherapy in the NHS :It is highly misleading to state that CBT is the therapy of first choice, since the only relative efficacy RCT quoted in the Guideline shows that counselling has better outcomes than CBT.

British Association for Counselling and Psychotherapy (BACP): responses to the Action for ME Membership Survey rate CBT and GET as the least helpful of a range of interventions...

British Dietetic Association: It is unhelpful to simply state that Exclusion diets are not generally recommended for the management of CFS/ME when irritable bowel symptomatology is quite common in this illness.

Chartered Society of Physiotherapy: If 50% get worse with GET, why suggest it as first line of treatment?

College of Occupational Therapists: The College has serious reservations about the suitability of this Guideline.

ME Research UK: (Commenting on CBT is an evidence-based treatment for CFS/ME). It is not. The evidence base consists of only five trials which have a validity score of less than 10.

National CFS/ME Observatory: The belief that evidence-based guidelines can be constructed on such an inadequate evidence base is, in our opinion, misguided.

National Coordinating Centre for Health Technology Assessment: NICE largely pays lip service to the principle of consensus, with patient evidence being viewed as biased and virtually ignored.

NHS Fife: as is common practice sale technique, the customer is gently led into a corner by a set of very cleverly designed questions aimed at achieving agreement on everything the salesman offers.

NHS Plus: the advice given to maintain exercise even when there is an increase in symptoms is potentially harmful and dangerous, and the supposed negative effects of deconditioning would be negligible in comparison

Royal College of Paediatrics and Child Health: There is a danger in relying solely on information from systematic reviews of clinical and randomised trial reports for non-pharmaceutical treatments that are not easily defined or replicated, such as CBT and GET.

Royal College of Physicians of London: We think that this is a potentially dangerous statement (ie.) that with increases in CFS/ME symptoms, exercise or physical activity should be maintained to avoid the negative effects of deconditioning. We are not aware of any clinician who would make this recommendation, except in a very mildly affected patient.

Sheffield South West Primary Care Trust: The narrow focus of the NICE Guideline may lead to helpful approaches being undermined and patient preference / clinical judgment being undervalued. All clinicians do not subscribe to the CBT model of CFS/ME, and (it) does not seem to be well received by many ME Support Groups either.

Source : Margaret Williams 2009 : Examples of concerns raised by professional bodies about the NICE (draft) Guideline CG53 on CFS/ME

As Asehely (2007) comments the NICE guideline could give the impression that : tiredness and a sore throat or headache equals ME. Nothing is further from the truth. Asehely also gives this advice to GPs in relation to CBT and GET :

discuss CBT, if it cures the patient your diagnosis of ME was wrong.

ME patients have the so called threshold phenomenon, meaning that they cant increase their stamina like healthy people. If they can or if GET helps to improve their stamina then again, the diagnosis of ME was wrong.

Graded Exercise Therapy, in particular, is probably the worse possible intervention in ME :

In submissions to NICE:

The British Psychological Society said that there is no evidence that GET (with or without CBT) actually increases activity levels

The Royal College of Physicians said Clinical evidence and patient experience suggests strongly that some patients may be worsened with GET

The Association for British Neurologists said that the (NICE) guideline needs to be thoroughly revised to reflect our current understanding of this condition rather than the supposition of the psychiatrists.

Source : Ruth Nolan (2007)

ME is most certainly not cured by Cognitive Behavioural Therapy (CBT) and Graded Exercise (GET; CBT and GET are potentially harmful to anyone with neurological ME. The Chief Medical Officer (2002), for example , has warned that exercise-based regimes advocated for less severely affected patients tend not to have been studied among those most severely affected.

Local surveys have shown that GET is the least popular intervention among Norfolk/Suffolk severe ME patients :

None of the respondents want a biopsychosocial service. 95% dont

want a psychiatrist, 90% dont want GET, and 72% dont want CBT.

Evidence from patients demonstrates that both GET and CBT to be

inappropriate and harmful

EAME/25 % Severe ME Survey of the severely affected in Norfolk and Suffolk 2007

Significantly, NICE does not recommend CBT and GET for people with Severe ME, who are excluded from Criterion 7 of its August 2007 Audit Criteria ; those ME patients provided with cognitive behavioural therapy and/or graded exercise therapy as a treatment approach.

CBT and GET, as this sufferer describes, are impossible for a severe ME patient :

The impossibility of CBT and GET for a Severe ME Sufferer

You cannot think when your brain won't work.

You cannot process information when there is a malfunction that is blocking it.

You cannot find mental energy you do not have in order to think positively at whim.

You cannot engage in a therapy if you are so physically and mentally lacking in energy and so neurologically ill that you cannot cope with the interaction.

You cannot attend a therapy session of 1.5 hours, when you cannot sit up in bed even, when you cannot cope with normal light and cannot attend a clinic because you are noise-sensitive and in constant pain..

Any one severe ME symptom, when exacerbated , is enough to put you in bed for weeks, if you have managed to get out of it in the first place.

You have to take into account the after-expenditure of energy and the impact of adrenalin that will be released under pressure, helping you cope in the moment but causing you to relapse once it has run out.

You cannot deny your reality, just because someone does not believe in the truth of the neurological basis of your illness.

The concept of "rest" is difficult to determine for those severe ME sufferers who move closer to disability and paralysis the closer they get to the resting/sleep state. Rest is the supposed key to pacing, but it is much more complex in people with severe ME. Sleep does not bring restoration of the normal. Even relaxation techniques could be deleterious for someone with severe ME.

You cannot increase your activity to order, when you only have a minute amount of energy. People with severe ME have at best 20% functional ability. You cannot go beyond what you have just because someone demands it.

You cannot exercise for a certain, controlled length of time when you cannot predict the worsening of the various different symptoms that you have or because you will it to be so.

You cannot make a body that is malfunctioning, function by trying to change your thoughts or by forcing it to move when it is unable, or on the brink of being unable.

Linda Crowhurst

Everyday life for the severe ME sufferer is a perpetual struggle. As Owen (2007) points out the most severely affected may not be able to speak, eat, swallow, open their bowels. They may not be able to sit up or move themselves, they may be too exhausted to dress or wash . The sound of running water may be too much for them to bear, they may not be able to open their mouth to brush their teeth.

Crowhurst L. (2007) describes how : "Having severe ME is unimaginable ; the experience is so different , intense and unremitting than anything I have ever experienced before. I am never unaware of the range of symptoms that rage through my body , and are dominated by intense never ending pain in every millimetre of my skin and muscles, over and throughout my whole body; head shoulders, back, front , arms legs, hands , feet, toes , fingers, eye lids , scalp the soles of my feet, the tip of my nose , my eyebrows even. They all burn, throb, tingle, itch, and hurt in ways indescribably unbearable , along with other unusual sensations"

Section 2 :

A Care Pathway for Patients with Severe ME

OVERVIEW (Management) :

The management challenges in severe ME are considerable . One local survey (Crowhurst 2007) showed that :

:

100% of severe ME patients in Norfolk and Suffolk want a biomedical service, neurological and blood tests, symptom management, ongoing support for secondary infections and diseases, and medical confirmation of symptoms and disability.

90 to 100% want physical tests, opportunity to participate in research,

home visits/assessment by the consultant, short waiting time, silent

waiting room, consultant level monitoring of ongoing research with

feedback to patients, and an information pack.

75 to 90% want a biomedical consultant, prescribing service,

wheelchair and mobility advice, advice on pacing.

There is a recognition that help may be needed adjusting to chronic illness and 61% wanted counselling.

Having severe ME means having to cope with a multitude of neurological and physical symptoms. :

The smallest number of physical symptoms experienced per severe ME sufferer in Norfolk and Suffolk is 12 and the maximum number of symptoms experienced is 37, the average

number of symptoms experienced is 25.

The most severe symptoms are general malaise, post exertional

fatigue, and loss of thermostatic stability

80 90% of severe ME sufferers experience head pain, bladder dysfunction, numbness, visual

and perceptual disturbances, nausea and vomiting

70 80% experience sore throat, flu like symptoms, heat/cold intolerance, extreme pallor, worsening of symptoms with stress and slow recovery and pain .

The following tables outline some of the difficult challenges that supporting someone with severe ME presents to services :

Severe Me: Key Symptoms, Impact And Service Response Tables

Symptom

Experience

Outcome

Service Response

Sleep Paralysis

Completely unable to move.

Difficulties with breathing

Difficulties with speech

Difficulties with swallowing

Cannot sit up/move/get-out of bed/feed yourself/get a drink/get dressed/talk/go to toilet/wash yourself/answer the door/get the post

Provide physical assistance: Lifting/Supporting

(assisted walking)/Mobility/Dressing/Personal Care/Shopping/

Cooking/Feeding

Knowledge of what the person needs in advance.

Sensitivity & Awareness.

Light sensitivity

Cannot bear bright light, maybe any light at all, even with eyes closed.

Need to wear dark glasses, have curtains shut, no lights on or low lights only

Acceptance

Be prepared

Work in low light situations and/or protect client from light if need light on

Noise sensitivity

Cannot bear loud noise, unexpected noises, banging and thudding in the room or in the environment

May not cope with electrical/mechanical machines i.e. hoover

Listening to speech

may be a problem

Loud voices/certain tones of voice may cause distress

Doors being shut / loud footsteps/ rustling paper/opening drawers/cupboards etc can cause torment

Develop appropriate communication system i.e. written instructions, low voice, possible sign language, be very gentle and quiet in all movements/actions. Be aware that your noise may cause distress even if not noisy to you.

Respond appropriately if you cause noise

Symptom

Experience

Outcome

Service Response

Sleep Disorder

Real problems going off to sleep and/or problems in waking-up.

Normal sleep pattern grossly disrupted (little or no restorative sleep).

Night insomnia and sleep all day. May sleep more than normal.

Body-clock out of sync with normal rhythms.

May be awake at night, distressed, severe fatigue, but still unable to sleep.

Body functions may be altered e.g. need to urinate more alongside a severe thirst and need to drink.

Low blood sugar because of increased time in bed during the day.

Increased irritability.

Advice on enhancing sleep possible relaxation /breathing techniques.

Reduction of over stimulation.

Warm bath to relax muscles.

Drugs to aid sleep

Assistance day and night to enable basic needs to be met: toilet, food, drinks etc.

Pain

Whole body may be too painful to touch.

Skin itching / burning/ hypersensitive.

Muscles throbbing/burning/screaming

May be continuous, may vary in degree.

Poor response to drug treatment.

Cannot bear to be touched.

Difficulty in getting comfortable: seating and bed and wheelchair.

Pain awareness and extreme sensitivity.

Knowing how to touch and lift carefully.

Patience and time is required to flow with the person.

Advice on what is available to alleviate pain: aids and equipment and drugs.

Symptom

Experience

Outcome

Service Response

Headaches

They are not normal, they maybe constant or last for days, can be predominantly left-sided, may not respond to drugs.

Also may be the experience of head-pain, as opposed to headache.

Scalp sore to touch. Eyes throbbing/burning.

Face can hurt as well. May be accompanied by numbness, paralysis, swollen eyeballs, and nausea. May be sharp, throbbing, may be dull but no less severe.

Be sensitive to noise and light issues.

Awareness of the potential emotional distress of being in constant pain and the potential for the person to be irritable.

Medication

Muscle Weakness/

Variability

May be able to use your muscles one moment and not the next.

Danger of falling/stumbling.

Affects the persons independence: may be not able to use hands/fingers/

perform fine movements.

May be able to walk one moment and not the next, or at all.

May not be able to write/type/turn things on and off/cook/clean/

attend to personal care/eat.

Mobility issues may require a wheel chair.

May be bed bound and/or housebound?

May require help with cooking, cleaning, shopping, personal care, with eating, writing, communicating, social interaction, sexual relationships.

May not be able to use stairs or unreliable use of stairs.

Adaptations/aids/

equipment

PLANNING :

The key components of a Severe ME Care Pathway must be :

Knowledge

Sensitivity

Awareness

.

Carers must be able to respond creatively in order to aid the person with severe ME. This means learning to understand :

What is needed

When it is needed

How it is needed

..which may not always be obvious or repeatable.

Any activity where thought and action work together can easily become out of reach of the person with severe ME, without any clear understanding or explanation of why. Simply speaking on a telephone for example, could be far too much for the person :

The person needs to :

Be able to hold the phone or put on a headset.

Be able to bear the noise.

Have the energy to physically answer the phone.

Have the energy to speak.

Have the ability to focus.

Have the ability to concentrate.

Have the cognitive ability to receive the information.

Have the cognitive ability to process the information.

Have the emotional strength to deal with the other person's emotional state.

Have the ability to cope with the tone of voice, loudness of voice , pace of conversation..

Have the ability to access information if they are asked a question.

Have the stamina to cope with a conversation of unknown length.

Have to ability to cope with waiting in a queue or waiting for a person, which uses an inordinate amount of energy and they may run-out of ability.

Have the ability to cope with the increased symptoms that will follow having used the phone.

Have the ability to cope with the potential shutdown of various systems that should support the actions they are doing, for example, their muscles running out, noise becoming too loud, their voice going, while on the phone.

Have the ability to cope with the post-exertional impact. (You have to remember that physical and emotional energy are equivalent in ME .)

Have the ability to coordinate their thoughts, energy and physical ability. the more complex the task, the more impossible daily living becomes and the more isolated the person becomes from the normal world; because the normal world becomes out of reach because of the complexity of the tasks and the impact of the multi-system dysfunction of the body.

The difficulties of speaking on the telephone for the severe ME sufferer.

An Individualised Management Plan

. Family members and carers, with the patients agreement , can contribute a wealth of essential knowledge and valid information., in the development of an individualised management plan. The severe ME sufferer should be provided with a summary of every discussion. (NICE 2007)

People with severe ME are at great risk, generally, of a dramatic increase in their symptoms, which could plunge them into even greater depths of illness, this is especially a risk if they leave the safety and security of their known environment

In planning any transition in the severe ME sufferers life, a host of environmental issues need to be taken into account well in advance, for example :

Physical comfort

Weight of bedding

Softness of mattress

Neck and back support

Noise and light exposure

Food /chemical sensitivities/allergies

Timing of meals

The how and when of physical assistance

The carer may not have the answers, but it isvery important to ask the right questions and not assume anything, as this Observation and Assessment tool shows :

Symptom

Questions/Observations

Comments

Hyperacusis

What is the patients response to electrical equipment, noise, telephone, doorbell, washing machine,

Hoover ?

Noise sensitivity can be so great that even a whisper sounds like a shout; it may be painful and it may increase a whole range of symptoms.

Hyperesthesia

Does the patient flinch, become irritated and depressed ? Is the skin hypersensitive to touch ? May be unable to tolerate massage, stroking, accidental contact.

The patient may find any kind of contact or movement over the skin unbearable. May flinch, may react strongly, verbally, be very distressed by even a slight brushing. The carer has to be very careful and aware.

Pain

Is the patient experiencing sleep difficulties because of pain ? Do they need special aids and

equipment ? Are there analgesics that help/ease the pain ? Is touch and lifting difficult because of pain ?

The patient with severe ME might experience muscle pain, nerve pain,

skin-crawling sensations, burning, itching, throbbing pain. The person with ME might feel extremely ill al the time, on top of the other symptoms. It may help to identify some of the symptoms in order to aim for relief.

Multiple chemical sensitivity

Does the person feel nauseous, experience headaches, rashes or other symptoms in response to being exposed to certain chemicals, smells, perfumes, toiletries, household cleaning

agents ? Have they developed specific food sensitivities/allergies ?

The carer must be aware that perfumes, deodorants, might have a deteriorative effect on the person with ME, which can be extreme and immediate. Household cleaning agents etc require careful consideration. Organic products might be less harmful.

Orthostatic intolerance

The patient may become greatly distressed moving from lying to sitting, to standing. They may be unable to sit upright. They may experience dizziness, increased feeling of illness, panic even, if made to stand.

The severe ME sufferer may feel utterly ill and/or unable to stand, but may not be able to identify why. It is important for the carer to know there is a physiological reason for this.

Unrestorative sleep

Does the patient feel more ill and in more pain upon waking ? Do they feel unrefreshed and unrested ?Do they have difficulties going to sleep and staying asleep ? Do they have difficulties waking up ? They may need to sleep during the day ? Sleep may push the person into a worse state of illness and paralysis.

The sleep pattern in ME is altered. May be awake during the night and asleep during the day. They may not experience restorative sleep. They may have nightmares. Paralysis is a significant symptom in sleep disorder.

Muscle dysfunction

Can the patient do something one moment and not the next ? Does the person have difficulty holding implements, difficulties with gripping ? Do they have difficulty holding even a light

object ? Do they have difficulty sitting or standing at varying times during the day ? They may require help eating, or vary in degree of help needed.

The ability to use any muscle may come and go and vary throughout the day and night and is beyond the control of the person with severe ME. They may be physically able to do something one moment and not the next. The patient must never be pushed to do something, just because they can it sometimes. There is a post-exertional malaise response to using muscles, that can occur up to hours and days afterwards.

Severe ME : Observation and Assessment tool

As the chart shows, in severe ME sleep/awake times and personal care needs are unlikely to fit into standard patterns.

An ME-aware Care Model

NICE acknowledges that the management of severe ME is "difficult and complex." (NICE 2007). In the authors experience (Crowhurst 2005) , the most appropriate approach is one that incorporates the Nursing Process (Yura and Walsh 1967) within a self-reflective model of practice .

Crowhurst (2005) has outlined how the experiential learning cycle (Kolb and Fry 1975) can be used to underpin ME practice , encouraging carers to reflect upon their practice experientially and holistically . Some important areas for practitioner reflection are listed below :

MIND :

What am I thinking about when I approach the severe ME sufferer?

Can I focus solely about what I am doing ?

Have I thought ahead about what potential issues might come up ?

Do I understand that ME is an organic, physical disease ?

BODY :

What is my intended posture ? Open ?

Partnership ?

Is my physical posture in keeping with my intention ?

Am I able to be gentle enough , when I help the patient ?

Am I too tired to help sensitively and carefully ?

Am I in pain anywhere myself ?

SPIRIT :

How do I feel about being with the patient ?

Can I connect with the patient and their need ?

Am I flowing with the right energy to make contact with the person ?

EMOTION :

What is my emotional state ?

Is it going to have a good impact upon my interaction ?

Am I distracted about other issues ?

Am I distressed by the patients issues ?

Do I feel good about myself ?

How do I feel about the patient ?

An ME-aware approach requires the carer to be :

particularly conscious of how ME manifests.

the full range of symptoms.

the likely impact of any interaction upon the person.

The prepared carer can lessen the chances of any deterioration in symptoms :

ASSESSMENT :

It is the way the carer approaches the patient with severe ME that determines the outcome of assessment.

Particularly with ME, the underlying beliefs, knowledge and understanding the carer has about the disease itself, could result in two very different assessments, depending upon whether the carer believes ME is a physical disease or a mental health issue and whether they adopt an authoritarian "I know best" approach or a more empathic partnership style of relating.

Not only are the carer's views and understanding of the illness important, their awareness in regard to their own power and responsibility are vital. An authoritarian approach, coupled together with an assumption that ME is not a real disease, that somehow the "patient is just not trying hard enough" , or has in some way caused their illness by wrong beliefs, means that the assessment will be deeply flawed.

PLANNING :

Again, the carer's underlying assumptions and knowledge of the disease will play a crucial role in planning any intervention. Unless the carer is aware that the person with ME is a long term chronically-ill patient, who is unlikely to get better ( anyone severely affected for more than 5 years has a poor prognosis of recovery (DH 2002)) , the planning may be way too hopeful with way too high an expectation of the patient. The carers preparation must be done with awareness before