The Hummingbirds' Foundation for M.E.

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

So you know someone with M.E.?

So you know someone with M.E.? If you know someone with M.E. and want to know how to deal with it, and what you can do to help, then this paper is for you...and good on you!

This is one of two papers on this site specifically written for the friends and family of M.E. patients. The second paper is entitled A million stories untold and it is highly recommended that you read this second paper along with the information on this page.

This page features the full-length 5 page version of this text as well as a copy of So you know someone with M.E.? Part 2: Tips on coping for friends, partners and family members.

To read the 2 page summarised version of part 1 of the text, please see: So you know someone with M.E.? - Summary

See the Downloads section below to download any or all of these papers in Word or PDF format.

So you know someone with M.E.?

Copyright © Jodi Bassett September 2009. From www.hfme.org     

 

So you know someone with M.E. (perhaps a friend or family member) and want to know how to deal with it, and what you can do to help?  Good on you! Some suggestions on where to start might include the following:

 

1. Offer acceptance, respect and emotional support.

Many people with M.E. have a history of terrible treatment and abuse from friends and family, as well as the medical profession thanks to the financially and politically motivated propaganda about M.E., and the planned ‘confusion’ between M.E. and ‘CFS.’

M.E. is a serious neurological disease. Treat your friend or family member no differently than you would treat them if they had multiple sclerosis or any other serious disease. (M.E. is in fact very similar to MS, medically at least, if not politically. M.E. also shares similarities medically with polio and Lupus.) Treat them how you would want to be treated if it were you that was unlucky enough to contact M.E., instead of them. M.E. is hell, but with no support from friends and family it can be made so much worse.

 

Your friend or family member may have no support at all, and may be facing serious medical abuse or neglect and/or disbelief and isolation or even cruel ridicule and so the positive effects from just being shown basic kindness and respect should not be underestimated. Your support may make all the difference in the world.

 

 

2. Learn the basic facts about M.E.

Learn more about M.E. so that you act appropriately towards you M.E. sufferer friend, as well as speaking and thinking about them appropriately, so you can understand what they are going through a bit better, and so you can educate others about the illness.

 

Learn that:

The quickest and best way to get some of the basic facts about M.E. is to read either the 10 page What is M.E.? paper, or the 2 page summary of this paper (included in the Word/DPF file of this paper for easy printing): What is M.E.? Summary


Also highly recommended is: A Million Stories Untold - this paper was written specifically for family and friends of M.E. patients.

 

Also note that one of the most important things for you to be aware of is the uselessness and unreliability of almost all information on 'CFS' 'CFIDS' 'ME/CFS.'  The mainstream media are not credible information sources, and nor are other advocacy groups.

 

This is especially true with the largest groups in each country, who have clearly sold patients out for their own benefit. To read more about this problem (and mention of those few groups who are reputable) see: Problems with 'our' M.E. (or 'CFS' 'CFIDS' or 'ME/CFS' etc.) advocacy groups and My comments about the current (worrying) state of Australian ME societies and Problems with the so-called "Fair name" campaign: Why it is in the best interests of all patient groups involved to reject and strongly oppose this misleading and counter-productive proposal to rename ‘CFS’ as ‘ME/CFS.’ 

To understand more about why this abuse is happening and why it has been allowed to happen, see: Who benefits from 'CFS' and 'ME/CFS'?  Having M.E. is hell, but having M.E. and being treated unfairly or inappropriately by friends and family is ...beyond description. Thank you for taking the time to learn some of the facts of M.E.

 

An additional note on M.E. education: It is also recommended is that you learn how M.E. affects the person in question, individually. While M.E. is very consistent from one individual to the next in its major features, each patient’s experience of M.E. is individual to some extent. The severity of different symptoms varies from patient to patient too.  If you don’t know how the disease affects the person with M.E., ask them. Your friend might appreciate your desire to understand.  He or she might prefer to tell you what you need to know, rather than have you guess or assume you know already. (If the person is too ill to describe their symptoms to you, it might be more appropriate to ask their carer.)

 

This should not need saying, but it is important that you believe your friend when they describe the symptoms they experience and their severity.  M.E. patients typically do not exaggerate or lie about their symptoms or their disability level, yet they often encounter alienating and demoralising scepticism or disbelief from doctors and others. The simple fact of your acceptance of what your friend tells you about the illness shows your respect, and may mean a lot to your friend.

 

You can show your care for the person by adapting your behaviour with them to accommodate their particular symptoms.  For example, some M.E. patients are particularly sensitive to noise, in which case as well as talking softly, you could consult them as to whether the sound level is all right – and so on.

 

3. Help the person with M.E. to rest, to avoid the sort of overexertion which can lead to disease progression

Rest is so important when a person has M.E., but sometimes M.E. patients can be so desperate for conversation and social connection and just plain old FUN, that it can be hard to moderate (or deny) ourselves at times, even though we know we will pay for it later. You can help by:

  • Being adaptable about communication modes. If someone tells you they can’t talk on the phone anymore but is able to have short visits, or can only talk via email, please accommodate them if you can, as much as you can.
  • Asking beforehand about the best time of day for calls or visits.
  • No surprise visits EVER! (You may put the person with M.E. in a very awkward position. They may either have to ask you to leave and feel they are being very rude and risk upsetting you, or, as may more often happen, they don’t feel they can say anything and so they instead suffer through the visit unable to enjoy it as they weren’t able to rest for it beforehand, and they spent days or even weeks very ill from it afterwards.)
  • Setting a time limit beforehand for calls or visits and making it easy for them to stick to it.
  • Asking if they need to leave should the person suddenly looks unwell during a visit.
  • Being gracious when someone with M.E. has to cancel a visit or a call (or end it prematurely).
  • Not pressuring someone to do something that they’ve said they can’t do, or don’t want to do, because of how much more ill it will make them.
  • Before you get angry about how you are being ignored or rejected by someone with M.E. (because they haven’t responded yet to your e-mail/phone message/invitation to visit) consider the thought that maybe the person just hasn’t had time to respond to you yet because of their illness. Just because YOU would have answered within the particular time frame (and if you hadn’t it would be because you are ignoring or snubbing the person), you have to remember that a person with M.E. will have a very different timeframe. Getting no response does not mean that the person necessarily has any negative feeling towards you or what you’ve written at all. It just means they haven’t replied yet! The last thing you want to do is get yourself worked up in any way over someone having the gall to do absolutely nothing to you!
  • When a person is very severely ill, the only contact they may be able to tolerate is for you to sit with them without talking, in their darkened room and some patients would very much appreciate such a gesture, if you are a close friend or family member. (Perhaps they may also like to have their hand held gently.

It would also be great if you could not tempt us to deviate from our often very strict diets! Or to drink alcohol, or smoke, and so on. Of course the final responsibility for monitoring these things lies with us; it is absolutely not your job to police us! But all help in making these difficult limits easier for us to stick to is appreciated. Having so many limits really isn’t easy, or fun. Also, they are particularly hard to stick to when so often the negative effects from overexertion (or eating the wrong foods) and so on are delayed 24-48 hours or more! It’s very temping to get carried away in the moment as you can probably imagine...it is unbelievably difficult having so many limits on every aspect of life.

 

M.E. is a hellish disease, but the good news is that you really do have the power to make an enormous positive difference to the person you know with M.E. – just by being there for them and offering practical and/or emotional support but also by helping them avoid overexertion as much as possible and so have their best possible prognosis.

 


4. Encouraging your friend or family member to be more active when they have M.E. can harm them

Even trivial levels of activity over their individual post-illness limits can cause severe relapse or leave them wheelchair bound, or bedbound for many long years afterward, or permanently – and you do NOT want that on your conscience. Overexertion can also cause death in M.E. (often due to cardiac insufficiency); again, you do NOT want such a tragic outcome on your conscience. Increasing activity levels is something every person with M.E. will do the second they are able to, trust me! But arbitrarily increasing their activity levels above what they can cope with can only ever be counterproductive. It’s a bit like telling someone with two broken legs to take up jogging, extremely painful, damaging and cruel – and of no possible benefit.


5. Remember that you can’t tell how someone with M.E. is doing just by looking.

Try not to make superficial judgements of ability or severity! An M.E. patient’s appearance does not indicate the severity of their illness; many M.E. patients do not look as ill as they are.  Further, an M.E. patient’s activity over a particular period does not indicate their abilities over the long term.  One can probably observe people with some illnesses carefully for an hour or so and collect a lot of good information about what they can and can’t do, how severe their illness is, and what their usual symptoms are from day to day, and so on. However M.E. is not one of those illnesses. M.E. is not a stable illness.

 

Observing the average M.E. sufferer for an hour – or even a week or more – will not give an accurate indication of their usual activity level because the severity of M.E. can wax and wane throughout the month, week, day and even hour. Also, people with M.E. can sometimes operate significantly above their actual illness level for short periods of time thanks to surges of adrenaline – albeit at the cost of severe and prolonged worsening of the illness afterward. Relapses and worsening of symptoms are also very often also significantly delayed (there may be both an acute AND a delayed reaction).

 

Note that M.E. patients often push themselves to perform at a higher level than they should, just during the times when they are in company and observed, i.e. when they have visitors or when they are in public.  Thus they are observed functioning at a level which is not at all representative of their illness.  The relapse which follows such overexertion occurs in private, so observers don’t realise it has taken place.

 

Just observing someone with M.E. do a certain task should not be taken to mean (a) that they can necessarily repeat the task anytime soon, (b) that they would have been able to do it at any other time of day, (c) that they can do the same task every hour, day or even every week, or month, or (d) that they wont be made very ill afterwards for a considerable period because they had to really push themselves (and make themselves ill) to do the task.

Often a considerable rest period is needed before and after a task, which may be hours, days, weeks or months long. For example, someone may need 2 weeks rest before an outing, for example, and may then spend 3 weeks extremely ill afterwards recovering from it. Just observing them in the 2 hours they were ‘out and about and mobile’ is of course not at all representative of their usual ability levels.)

 

Most importantly, because the worsening of the illness caused by overexertion may not even begin until 48 or more hours afterwards (when most observers are long gone), it’s impossible to tell by seeing an M.E. patient engaged in an activity, whether that activity is so far beyond the patient’s limits that it will end up causing a severe or even permanent worsening of the illness (or ‘relapse’). To be blunt, the activity may even end up killing the patient. This isn’t common (the death rate is estimated at 3%), but deaths can and do occur. Thus, observers who see an M.E. patient engaged in an activity have no idea what the consequences of this activity may be.

One simply cannot know a M.E. sufferers usual ability level or severity level unless you have observed them over a very long period of time, or actually asked the person detailed questions about what their average daily activity limits, abilities and symptoms are. Short-term and superficial judgements of ability and disability levels in people with M.E. are ill-advised. Appearances are almost always very deceiving with M.E.

 

See The M.E. Symptom List for more information. See also: Why patients with severe M.E. are housebound and bedbound and Hospital or carer notes for M.E.  



6. Remember that telling your friend or family member to ‘think themselves well’ when they have M.E. is not helpful, or kind or reasonable.

There is no more possibility that M.E. could be improved by positive thinking or willpower any more than with multiple sclerosis or Parkinson’s disease. If there were, we would ALREADY no longer be ill – there is nothing on earth more motivating than not wanting to have M.E. any more. But personality types and attitudes have nothing to do with the prognosis of M.E., any more than with these other illnesses. Studies showing positive outcomes for exercise and positive thinking (GET and CBT) on tired people are irrelevant to people with M.E., or those with any other distinct neurological disease. Telling someone with a serious organic neurological disease that they are only ill because ‘they think they are’ or that they could ‘think themselves well’ if they really tried hard enough is abusive, and incredibly cruel.

  

This approach can be very harmful.  As above, if M.E. patients are influenced to push themselves beyond their physical limits, they can seriously damage their health (even unto death in some cases).

For more information see: The effects of CBT and GET on patients with Myalgic Encephalomyelitis and Comments on the 'Lightning Process' (etc.) scam

 

 

7. Please don’t recommend treatments you may have read about online, or in the paper, or from friends

The vast majority, very close to 100% of media articles about M.E. are in fact talking about various subgroups of ‘CFS’ – people with all sorts of very different and often much milder and/or transient diseases.

 

Never listen to treatment recommendations which came from your friend’s brother’s neighbour’s second cousin twice removed (or similar) who supposedly had ‘just what they have’ and who ‘recovered completely’ and is now ‘back working full time’ because of treatment x. Such ridiculous stories should always be treated with the contempt they deserve by all of us. There is a very strong possibility these people never had M.E. …but there is an even stronger possibility that they never existed at all! The treatments recommended are always the most mundane things too, well known over the counter products, or simple diets etc. as if people as desperately ill with M.E. and the doctors who have devoted decades of their lives to treating M.E. patients wouldn’t have tried all the simple things already! Again, if it was that simple nobody would still have M.E., and certainly not severe M.E.

 

If something really worked, the M.E. world is very well connected and VERY EXTREMELY motivated to get better, and we would all KNOW very very quickly. That is a fact you can count on.

 

That isn’t to say that there aren’t treatments that can help with some symptoms. There are. Whilst there is no cure as yet, or treatments which can dramatically influence the natural course of the illness (due to the appalling lack of funding for legitimate research); intelligent nutritional, pharmaceutical and other interventions can make a significant difference to a patient's life. However, the person you know with M.E. will know far more than you do about where to find legitimate information and which sources to avoid, so again, please don’t recommend treatments unless you are specifically asked to.

 

If you absolutely must recommend something, then print the information out and send it by post. Also, let the person know that you are not putting any pressure on them to try this medication and that if they do not choose to try it, they do not owe you an explanation. You may also want to read Treating M.E. - The Basics first to make sure the treatment isn’t already well-known, or known to be not appropriate for M.E.

 

Bogus treatment recommendations can leave a M.E. patient far more severely ill, and lose them a lot of money. The biggest ‘cost’ from being taken in by misleading claims about treatments is not usually the financial cost however, but the emotional one; the high emotional price of false hope. Many M.E. patients have already been wearied and traumatised by having their hopes repeatedly raised and dashed. Getting your hopes up that you have found the answer and that things will soon be so much better for you and then having your hopes completely shattered when the treatment doesn’t live up to the claims made about it can be truly devastating. 

 

It’s also very hurtful when friends and family members recommend basic treatments to us, as it seems to imply we haven’t even spent an hour or two doing even basic research to try to get better (and nor has anyone else with M.E.!). It’s hurtful and can feel very insulting, even though often it’s well-meaning at heart. Nobody wants to get better more than M.E. patients do! Nobody.

 

Please don’t offer medical advice unless asked, and even then, be very careful you aren’t doing more harm than good (this is so easy to do).

 

 

8. Some M.E. patients may appreciate some practical help.

  • You might like to ask the person you know with M.E. if they are in this situation, you may then offer to:
  • Do some shopping for them on a regular basis
  • Help with meals or other household tasks
  • Drive them to medical appointments
  • Research something for them online e.g. disability services.
  • Do anything they need doing that you are able to do.

If you have any involvement in the care of the person with M.E., you may like to read:

 

 

9. Be a good friend and let your friend continue to be a friend to you.

Even if we’re dealing with severe illness, we know it can’t always be about us, and we don’t want it to be either. It can be a bit of a tricky balance, but we do still care about you and your life and want to hear about it and offer support, as much as we are able. We understand that even though we are dealing with a lot, your problems are still important too. It isn’t a competition, and less awful problems than M.E. don’t suddenly become easier to deal with just because someone you know is dealing with something like M.E.

 

M.E. affects patients physically and changes their experience of life, but your friend’s personality remains the same.  Your friend is still the same person, with the same sense of humour, likes and dislikes and quirks.

 

M.E. may affect your friend’s cognitive function, for example concentration or word-finding.  This does not mean that your friend has become stupid.  Try not to be thrown by your friend’s cognitive symptoms, and remember that your friend is fundamentally the same person he or she always was.

 

M.E. will have changed your friend’s life enormously.  Your friend may have experienced many important losses.  Amidst such changes, continuity of relationships may be very valuable to your friend.

 

Remember that your friend or family member is still in there and still has all the usual hopes, dreams and desires.

Cut them some slack if sometimes they’re in a bad mood, or are feeling very sad or angry.

 

Remember that the fact that they have to be very picky about light and noise etc isn’t their fault. They are NOT just ‘being controlling’ or bossy or a ‘control freak.’ (You would be very aware of light levels and noise levels if they caused you horrific low-level seizures that lasted for many hours and so on too! Trust us! It’s horrible having to be so careful with every small input, but even worse when you are made to feel that you are somehow doing this because you enjoy it in some way or that it’s just a part of your supposed ‘personality issues’.)


Remember that although your friend may seem happy and seem to be coping - and even if they are - they’re still living every day under extreme stress, with extreme pain and suffering with no end in sight. Many of us hide our suffering very well, particularly after many years of being very ill, but that doesn’t mean it isn’t there. It doesn’t mean keeping ourselves going isn’t very taxing and draining. When you’ve been living in a very unpleasant and difficult situation for many years, you just can’t rant and complain about it endlessly, or else you’d spend your entire life being angry and depressed, and we have enough to deal with already without that additional burden. Most of us try to find all the joy and happiness in small things as much as we can, to be able to keep ourselves going.

 

Remember that sounding happy is not the same as sounding healthy. Feel free to comment on how happy someone sounds but don’t assume that this means that they are doing well health-wise.

 

Your friend with M.E. won’t be expecting you to always do everything perfectly, we understand that nobody is perfect but appreciate your taking the time to try to at least avoid some of the biggest potential problems. By reading this paper, you are already demonstrating that you care for your friend – so thank you.

 

 

10. Help get other friends and family members informed and on-side.

Explain to them calmly but firmly why M.E. isn’t ‘CFS’ and why all the information they may have read about ‘CFS’ doesn’t apply to M.E. patients, and so on. You may want to give them some one or two page handouts listing the basic facts of M.E. The summary of ‘What is M.E.’ in included below (in the Word/PDF version) for this purpose.

 

This information may be received far better coming from you rather than from the patient, and if it isn’t received well at least you have tried and have spared your friend or family member a lot of mental effort and upset.

 

 

11. Help get the wider community informed and on-side.

If you really want to get involved, you could distribute leaflets to your street, doctors in your area, and so on. The summary of ‘What is M.E.’ is included below for this purpose. Or you could even consider joining the HFME discussion group and playing a part in working out how this new M.E. charity is run (email Jodi Bassett for details) or just helping in small ways with their work. Also, if you'd like to make a donation to help fund M.E. advocacy, see the Donations page.

 

More information/background information

  • Highly recommended is: A Million Stories Untold - this paper was written specifically for family and friends of M.E. patients.
  • To read a complete list of the articles and resources available on the site suitable for different groups severe M.E. patients, M.E. patients, patients misdiagnosed with CFS, doctors, friends and family of M.E. patients, carers and so on see the Information Guides page.
  • In short:

Chronic Fatigue Syndrome is an artificial construct created in the US in 1988 for the benefit of various political and financial vested interest groups. It is a mere diagnosis of exclusion (or wastebasket diagnosis) based on the presence of gradual or acute onset fatigue lasting 6 months. If tests show serious abnormalities, a person no longer qualifies for the diagnosis, as CFS is medically unexplained. A diagnosis of CFS does not mean that a person has any distinct disease (including M.E.). The patient population diagnosed with CFS is made up of people with a vast array of unrelated illnesses, or with no detectable illness. According to the latest CDC estimates, 2.54% of the population qualify for a CFS (mis)diagnosis. Every diagnosis of CFS can only ever be a misdiagnosis.

Myalgic Encephalomyelitis is a systemic neurological disease initiated by a viral infection. M.E. is characterised by (scientifically measurable) damage to the brain, and particularly to the brain stem which results in dysfunctions and damage to almost all vital bodily systems and a loss of normal internal homeostasis. Substantial evidence indicates that M.E. is caused by an enterovirus. The onset of M.E. is always acute and M.E. can be diagnosed within just a few weeks. M.E. is an easily recognisable distinct organic neurological disease which can be verified by objective testing. If all tests are normal, then a diagnosis of M.E. cannot be correct.
     M.E. can occur in both epidemic and sporadic forms and can be extremely disabling, or sometimes fatal. M.E. is a chronic/lifelong disease that has existed for centuries. It shares similarities with MS, Lupus and Polio. There are more than 60 different neurological, cognitive, cardiac, metabolic, immunological, and other M.E. symptoms. Fatigue is not a defining nor even essential symptom of M.E. People with M.E. would give anything to be only severely fatigued instead of having M.E. Far fewer than 0.5% of the population has the distinct neurological disease known since 1956 as Myalgic Encephalomyelitis.

CFS is a medical fraud, created (and maintained) for political and financial gain by vested interest groups. People with M.E. are not being mistreated because of a lack of scientific evidence; there is an abundance of evidence spanning 70 years which proves beyond any doubt that M.E. is a distinct organic neurological disease. Accordingly, Myalgic Encephalomyelitis has been recognised by the World Health Organisation (WHO) since 1969 as a distinct organic neurological disorder.  M.E. is classified in the current WHO International Classification of Diseases with the neurological code G.93.3.

Medically, M.E. is very similar to diseases such as multiple sclerosis. See the new M.E. vs MS: Similarities and differences paper for details.

All people with M.E. want is to be treated based on the available science, and to have their fair share of the resources available to those with medically (if not politically) comparable illnesses such as multiple sclerosis or motor neurone disease etc. Sadly this is not happening now, and patients are being mistreated based on political and financial considerations and the science AND REALITY is being ignored. Please help to spread the truth about M.E. and the difference between M.E. and CFS. Knowledge is power.

Contributors to this paper

Lesley Ben and Peter Bassett.

So you know someone with M.E.? Part 2: Tips on coping for friends, partners and family members

Copyright Lajla Mark and Jodi Bassett, February 2010. From www.hfme.org

So someone close to you has M.E. and you'd like some tips on how to cope and what this might mean for you, and perhaps also your family.

Here are some suggestions:

  1. Know that you did not cause the person to contract M.E.
  2. Learn the basic facts about M.E. (and about the person's individual illness/limits)
  3. Know that it is okay to feel sad and to grieve your own losses
  4. Get support from friends and/or others facing the same situation
  5. Make good communication between you and the ill person a priority
  6. Don't feel guilty about taking some time out when necessary
  7. Cut yourself some slack too
  8. Just do your best

 

1. Know that you did not cause the person to contract M.E.

Know that nothing you did or didn't do as a parent, caused your child to get M.E. M.E. is caused by a virus which doesn't discriminate, and can affect anyone at any age. If you have any feelings of guilt about causing a person's M.E., let them go.

What matters is what you do now to make things better, or worse. The right care can make an enormous difference to the prognosis of M.E. and that is something you can affect, right now, which is good news. Let that be your focus.

 

2. Learn the basic facts about M.E.

Learn that:

  • M.E. is not fatigue or 'CFS' or 'CFIDS' or 'ME/CFS.'
  • M.E. is not medically unexplained or mysterious. See: What is M.E.?
  • M.E. is a serious and potentially fatal acute-onset neurological disease that is similar in many ways to MS and has more than 60 neurological, cardiac, metabolic, gastrointestinal, immunological and other symptoms. M.E. occurs in epidemic and sporadic forms and can be tested for using a series of objective tests.
  • People with M.E. are made much sicker by physical activity (or being upright or even thinking or taking in sensory input such as noise and light) beyond their individual limits. This includes even seemingly minor activities. Relapses can be severe and can last hours, days, weeks, months or even years, or longer.

Be aware that almost all of the information given on this topic in the media and even by charities and government, is factually incorrect and misleading.

It is also recommended that you learn how M.E. affects the person individually by asking them about their illness and what they most need help with or need to avoid. The simple fact of your acceptance of this information shows your respect, and may mean a lot to your friend, partner or family member.

It is also very important that you have at least a basic grasp of this information so that you can educate those around you where needed, to try to get as much support as possible - for both of you. (You might like to print up some HFME leaflets for easy redistribution to those around you.)

 

3. Know that it is okay to feel sad and to grieve your own losses

The person who has M.E. will be going through many different emotions. They will be struggling to accept that life has changed and be in mourning for what has been lost (freedom, status, job, relationships, long-held hopes for the future). They will sometimes feel sad, angry, frustrated or completely overwhelmed.

If you are close to someone with M.E. you will be going through may of these same emotions. (Studies have shown that this is the case; that close friends and family members can go through the same roller-coaster of emotions as the ill person does).

Perhaps you miss the other person even though they are still there, as they just aren't physically able to talk like they used to and offer support, and/or are too overwhelmed with their own emotions to offer you the support they once did. Let yourself go through the process of grieving for what you have lost.

 

4. Get support from friends and/or others facing the same situation

Talking to other people in the same situation as you may be very helpful (try an online support group), as can talking to a very good friend of you both. You will need support.

Consulting a psychologist specialised in this area may be another option, if necessary (and if you can find a person that is accepting of M.E. as the disabling neurological disease it is).

 

5. Make good communication between you and the ill person a priority

Communication is key. To be able to look after your own needs in this difficult, emotional stressful situation it is important to keep an open communication with the ill family member or friend. Work to create good communication about how to deal with the situation, on both sides. This is extremely helpful for you (and your family) and will in the end be very helpful for the M.E. patient as well.

Instead of assuming how the ill person may feel about you doing a certain task in a certain way, find out what they actually think and need - you may be able to cut back what you are doing in some areas, which may be a huge relief, and perhaps other areas may need slightly more attention or a different type of attention.

For example, some patients may prefer you to stay with them and talk or do things with them, rather than doing the dishes or cleaning the house etc. Or they may prefer the independence of feeding and bathing themselves (even if it's very difficult for them physically), rather than having you help with it. The only way to know which tasks are the most important for you to do is to ask the patient.

Good and honest communication is the most important thing. Talk to each other about how you can tackle the situation together, so that everybody involved, including the ill person, is as happy and satisfied as possible with their friendship/relationship/family and their lives. This is especially important if the ill person is a child or an adolescent.

 

6. Don't feel guilty about taking some time out when necessary.

Having time and space to yourself is very important so that you don't 'get fed up' with the situation -and the patient. Talk with the patient about how and when this can best be done.

If it is a financial option - pay for carers or for someone to take care of the household, so that your relationship (if you are a couple) doesn't shift from an equally balanced relationship into a carer-patient or parent-child relationship. Your dignity is important - and so is the patient's, whether they be an adult or a child. Continue to consider yourselves as husband and wife, each others partner, parent and child, siblings or close friends.

Keep your favourite hobbies and friends, although you might have to make adjustments about the amount of time spent on each hobby etc. You need the space and time off sometimes - and the fun and enjoyment - and this will also give you and your ill partner/family member something else than illness to talk about.

Chances are that even of the ill person can't do many things they would like to do and used to do, they still very much want you to be able to these things and to enjoy life as much as possible.

The person with M.E. needs you, but of course this must be balanced with your own needs, both practical and emotional.

 

7. Cut yourself some slack too

You are dealing with a difficult situation that is long-term and you are going through a lot emotionally as well, including dealing with a lot of stress. You are allowed to not be perfect all the time and to have off-days. Cut the person who is ill some slack, as well as yourself. You are both only human! Be kind to yourself. Be your own best friend.

 

8. Just do your best.

There is no perfect way to deal with all of this, so all you can do is your best.

 

More information for families:

As you would spend special time just with the ill child, make sure you set aside special one-one-one time with each other child as well so they don't feel left out or not as important or start resenting the ill child for how much extra time they get with mum and/or dad.

 

More information for parents, friends or partners:

Remember to 'nurse' your relationship with the ill loved one too. Sometimes this is all they have left so your relationship with them as a friend, parent or partner is very precious to them. Don't ever forget that you are still two different individuals. Be careful not to melt into ONE patient and be careful not to be 'overly helpful or protective'. You are supposed to take care and be reasonable - not take over.

 

More information for partners:

Where the ill person is your partner, there will be periods when sexual intimacy is not an option. But even then, showing affection, tenderness and love can still mean the world - for the ill person and for you too.

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

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

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

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

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

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

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

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

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

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

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

For more information, and to read a fully-referenced version of this text compiled using information from the world’s leading M.E. experts, please see: What is M.E.? Extra extended version. Permission is given for this unedited document to be freely redistributed. Please redistribute this text widely.

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

He writes:

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

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

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