What is it?
M.E. stands for Myalgic Encephalitis. Myalgic means pains, and encephalitis means an inflammation of the central nervous system. It's also called CFS (Chronic Fatigue Syndrome) or PVFS (Post-Viral Fatigue Sydrome). It affects your immune system, that is, the way your body responds to illness and emotional problems such as stress and depression. It is a very real medical condition, although it can be quite hard to prove it to other people.
What does it feel like?
All these terms are more a description than a diagnosis since people may experience it in different ways. With M.E. you are likely to experience some or all of the following:
- aches in muscles and joints, though the joints don't swell as they do in arthritic conditions. Often (but not always) they're worst first thing when you wake up. The pains may not always be in the same places, they'll vary in severity and on good days you may not have any pains at all. They won't always feel the same either. Good descriptions for pains include: mild, moderate, severe (can wake you up or keep you awake); sharp, dull, achey; tingling, prickling, stabbing; throbbing.
- Some muscles may twitch involuntarily, and you may have tics e.g. around your eyes or mouth.
- muscles feeling weak or actually lack strength. You might, for example, be walking a dozen paces from your bed to the loo and half-way there you wish you could stop moving because it's such an effort.
- low-level fever with temperature going up and down, more so when you are tired, have done something physical or towards evening.
- feeling hotter or colder for no apparent reason. This can mean, for example, that you get a lot of cramp in your feet because they feel cold even though it's a warm day or night.
- brain-fog, that is, you can't think with your normal clarity, and you're likely to find it harder to concentrate.
- dizziness, either when you turn your head or just when you're perfectly still. You may feel light-headed especially when you suddenly stand up. Dizziness can also be a symptom of other conditions so do tell your doctor.
- lots of sore throats, often with one or both glands under the ears being slightly swollen or tender.
- headaches and migraines are also common.
- A feeling of vague malaise, that is, being "one degree under" or slightly ill with no specific reason.
- you feel exhausted even without effort, and you feel Tired All The Time. TATT is always a part of M.E., but unless you have any of the other symptoms listed here it could also be a sign of something different, so do go to the doctor and discuss it with him or her.
- sleep disturbances. These could be that you keep waking up, you can't get to sleep or wake very early, or you sleep far more than you normally would. In bad patches you may sleep up to 16 hours a day and still feel TATT.
- tummy troubles, perhaps including biliousness or IBS (Irritable Bowel Syndrome).
- Many people, but not all, may experience depression as a result of M.E. (see below).
- being particularly vulnerable to infections, which means you may get more of them and they may affect you more severely and for longer than they affect others and you're likely to need a longer post-illness recovery time.
- you may have an ongoing, long-term physical illness on top of your M.E.
Social and Family Difficulties for M.E. Sufferers
Sadly, because many people have little understanding of this painful and debilitating condition, you may find friends or family losing or lacking sympathy, or even openly critical or hostile even when your condition doesn't mean they have to undertake more tasks or care for you. They may try to bully you either because they're fed up of extra tasks or in a misguided belief that "it's for your own good". They may tell you you're in denial and they know better about you than you do. In time they may even cut off. This doesn't mean you're worthless. Their actions are a reflection of their lack of understanding, and possibly of a fear of illness too. Don't try to pretend you're OK when you're not, or hide what you're feeling, as this only makes it seem like you could be better if only you wanted to. They can believe what they like. You're the expert on you. If you suffer from such difficulties it's worth talking to a caring counsellor.
What causes M.E.?
- It usually occurs following a series of viruses or illnesses severe enough to have needed antibiotics, or after a serious illness.
- It can occur in people who have had a long-term visceral illness, for example, a long-term lung problem such as bronchitis or acid burns in the lung, or an ongoing gut problem such as Irritable Bowel Syndrome.
- It mostly affects people who have been very active and who have tended to "soldier on" when not feeling too good.
- In some people depression may be a trigger.
- Usually a combination of these factors is needed to trigger M.E.
- Nobody has as yet identified a specific viral or physical cause for M.E., which again makes it hard for doctors to diagnose.
- Recovery is possible. It may take a long time and you will certainly need to make some lifestyle changes, but it is possible to overcome it or to manage it in ways that mean you can regain a good quality of life. Tactics are listed further down.
Depression and M.E.
- With M.E. your performance at work or in household/family tasks is likely to be affected, sometimes severely. Out of love, loyalty, obligation or the need for a pay-check you may soldier on or do too much trying to catch up after absences, and thus make yourself worse. Even when you do manage to tackle tasks you are likely to feel overfaced because you still have less energy than they require. You may therefore neglect or skimp tasks, either at work or at home, whether it's housework or paperwork like paying bills.
- This means you may receive criticism and conflict from colleagues or family members. Hurtful and unfair labels such as "lazy", "malingerer", "sponger", "hypochondriac", "incompetent" or "uncaring" may come your way. You may even hand these labels to yourself. These hurt much more if you believe them, and can damage self-esteem.
- Those in outside employment may finally be dismissed, perhaps under a cloud.
- If so you will probably feel depressed because you've lost:
1) faith in yourself and your abilities
2) your normal routine, which gave your life structure and purpose
3) your income, which means you'll have further difficulties to deal with, and little energy or enthusiasm to face up to these worries.
4) a lot of your social contact, especially if former colleagues blame
you for letting them down.
- If your partner or family are unsupportive, your relationships may be either damaged or lost, with consequent sadness and upheaval.
- If you're ill for some time, you may have little energy for your normal social activities, so gradually friends may fall away.
- Since you're likely to have little energy (or money) for fun, you're likely to fall prey to boredom.
- It's also easy to beat yourself up with self-criticism and despair.
- Frequent or ongoing pain is depressing in itself.
- Depression is therefore a fairly common result of M.E., and can also be a factor in developing the condition.
- Symptoms of depression include lack of energy and enthusiasm; being unable to start or finish tasks; feeling tired all the time; low self-esteem and lack of confidence; feeling powerless, hopeless or stuck; the mistaken belief that you'll always feel this bad and will never recover; an inability to look forward to things; flattened affect, that is, you feel numb and unable to experience pleasure; changes in sleep patterns and eating patterns; sometimes weight-gain or loss. As you'll be aware, many of these are also features or results of M.E. While M.E. and depression are not the same, if you have an element of depression, treating it is a good step on the way to recovery from M.E.
- If you believe you may be suffering from depression, it's important to talk things through with your doctor. Appropriate short-term medication can be a great help.
- Counselling with a caring therapist who treats you as a whole human being is an important tactic in overcoming depression. Some people also find Cognitive Behavioural Therapy (CBT) useful. Counselling on the NHS may involve a long waiting-list and a short course of specific anti-stress tactics which may not be relevant. In my experience more people find relief via private counsellors. Your doctor may have a list of voluntary organisations offering free counselling, or you could go to www.mind.org.uk to find out if there's a branch of this excellent organisation near you. Yellow Pages also list practitioners under Counselling & Advice. Alternatively you can email firstname.lastname@example.org saying where you live to ask for a list of Transactional Analysis therapists in your area. TA may be especially effective in helping people with both ME and depression. You may find the Depression section of this Emotional Magic website particularly helpful.
Dealing with doctors
- Most doctors, but sadly not all, now recognise that M.E. is a real condition with real, physical causes and effects. If yours doesn't, find a second opinion.
- It's important to keep going back to the doctor. Even if s/he is sceptical or dismissive, s/he can't hear what you say if you're not saying it. Eliminating other possibilities can be helpful in identifying M.E.
- To manage the brain-fog so you can say what you want to say, it can help to list your symptoms briefly on a piece of paper.
- It can be useful to take a supportive partner, relative or friend along with you for moral support. Prime them in advance so they're ready to verify your information or add to it.
- Always give your worst symptom first.
- Repeat your worst symptom at the end of your statement too.
- Because M.E. sufferers commonly have depression as well, doctors normally ask if there's anything you're looking forward to (a key diagnostic question with depression). Having read the information on this site, you'll have a good idea of whether or not you're suffering from depression as well as/instead of M.E. If you have both, treating the depression often makes you feel better even on the M.E. front.
- Sadly, I've found private doctors more helpful than NHS ones, and you get quicker referrals to specialists. Currently a consultation with a private GP (general practitioner) costs around £60 for 15-30 minutes. If you want to see a specialist, you'll need to see the private GP first for a referral, unless of course your own GP has given you a referral which the private clinic will accept. The specialist consultation is currently around £170 for 15-30 minutes. I felt a lot better in every way once the physical problem had been sorted out by a chest specialist, and found the musculo-skeletal specialist particularly informative and helpful on the subject of M.E.
- Your doctor can sign you off for sick-notes or early retirement so you get any benefits you're entitled to, e.g. sick pay, invalidity benefit, income support, housing, pension etc. If you need somebody to help out, your known doctor is the best one to sign the medical parts of applications for the different levels of attendance allowance or carer's allowance. For this reason alone it's worth keeping in touch with the doctor. The CAB (www.citizensadvice.org.uk) or Neighbourhood Office if you're lucky enough to have on in your area can advise, as can the benefits office. It's still worth approaching the CAB or NO first, though.
- There are no instant, magic cures (sorry!). Any that are offered for large sums of money are probably a con so don't let yourself be tricked out of your cash!
- If appropriate, make sure you sort out any underlying physical condition.
- Pace yourself. This is perhaps the most important tactic to help you manage M.E. and recover from it. Listen to your body. It will usually tell you what you can and can't do. As recovery progresses, you'll also need to be aware that how much you do today can affect you tomorrow, the next day or up to a week later.
- Aerobic exercise, that is, exercise which makes you breathe a bit faster, is useful but remember to stay within what you can easily do. Walking and swimming are both good even if you can only do 5-10 minutes at a time and only once or twice a week.
- Work out a cost/benefit analysis of activities. You may really want to decorate your bedroom or go to a function - but how long will it take you to recover afterwards? Is it worth the cost in pain and fatigue right now or over the next few days, and is it worth a consequent period of illness? Sometimes it is. Can you factor in a period of rest afterwards? Can you get anyone to help you?
- If you suffer from sleep disturbance, on top of the usual advice like having a regular bed-time and a relaxing bedtime routine including a milky drink, it can be useful to take a medicine which helps you sleep. As individuals respond differently to medication, trial and error may be needed to find one which works for you. Talk to your doctor or pharmacist about this.
- If you find it hard to get up in the morning and hard to move about much, you're equally likely to find it hard to get to sleep at (what you consider to be) a reasonable time. This can cause you further sleep disturbances and family or social mis-matches. If possible, go to bed either when your partner does or at what you logically consider a reasonable time and try to bring your getting up forward a bit at a time to something you find acceptable. Note the word "try" here. It can take a good while! Don't beat yourself up if you're having to sleep 12-16 hours a day. Go with it for a while and as you pace yourself you'll almost certainly improve your daily sleeping rhythm.
- Echinacea is a plant extract which stimulates the production of white blood-cells or phagocytes. These "eat up" germs. Some doctors not only recommend echinacea, they also use it themselves. Try reputable herbalists. Dr Vogel's Echinacea is one I recommend. Cheap ones aren't as effective. Take it according to the directions for two weeks on, two weeks off. This helps fight off infections.
- Good multi-vitamin and mineral supplements, and cod-liver oil of a type recommended by your pharmacist, can help both physically and emotionally.
- Pain-management techniques work differently for different individuals. You won't know until you try, but do listen to your body and see how it responds. Some useful types are: paracetamol; ibruprofen or codeine (not with stomach complaints!); hypnosis and self-hypnosis; relaxation tapes; meditation; reiki and EMF (see below); TENS machines (from larger chemists' such as Boots); a warm bath, a hot wheat pillow or a hot-water bottle on the sore bit. Doctors may refer you to a pain clinic at a hospital. Again, see how you go with them as they don't suit everybody.
- Sceptical though you may be, many M.E. sufferers have found healing techniques such as Reiki and EMF (Electro-Magnetic Field) healing of significant value in feeling better and having more energy. Spiritualist churches offer non-religious healing services for which you just put a donation in the collection box. People of other faiths who seek healing are welcome, and M.E. sufferers may find relief from pain and increased energy there.
- Another alternative therapy which can be helpful for pains is acupuncture.
- Some people find Chinese medicine helpful. This is usually herbal but may also include acupuncture. It can be quite expensive (around £70-£130 a month) for two treatments + a month's herbal supplies.
- The Bowen technique is a very gentle massage-type healing activity.
- Some people find aromatherapy and/or relaxing massage helpful. Don't try sports massage as this is likely to be painful.
- Meditation and, if you're up to it, yoga, are good for promoting calm, healing, good sleep and optimism. Meditation classes are quite cheerful and sociable as they usually have a tea-break and time to chat before and after. Some are run by Buddhist centres but don't worry, they won't try to convert you. It's OK to be a Muslim, Hindu, Christian, Jew or whatever and go to meditation classes.
- Tai ch'i is also good for building energy and positivity, but don't do too much too soon. Always listen to your body and work at your own pace.
- Counselling is great for ridding yourself of negative beliefs, self-criticism, guilt and feelings of inadequacy. Therefore it helps overcome depression and anxiety and build hope and optimism.
- Since recovery from M.E. can be very slow, it's worth keeping a brief diary under the headings: activity, mood, pain. If you like, enter your responses as points out of 10, where 10 is full-scale normal activity, or optimism and good feelings, or full-on serious pain. The object is that over time you'll see you'll have different levels of activity, mood and pain, so you know that if you're having a bad day today, it's not always this bad and sometimes it's pretty reasonable. In the long term this can show you that little by little, so long as you pace yourself, you can get better.
- You may be tempted to overeat, either in a quest to find something to improve your health or just cheer yourself up, but it leads to overweight which is depressing and damages your health and levels of mobility. Groups such as Slimming World and WeightWatchers can be useful but mostly they don't seem to get that people with M.E. can't really do exercise. Some hospitals run weight-watching groups for M.E. sufferers. Try contacting the dietician.
- Smoking and drinking alcohol may seem like short-term pick-me-ups but overindulgence in either causes further damage to your immune system and so makes you feel worse overall. Either cut out alcohol and nicotine, or reduce them to no more than 2 units of alcohol a day (1 pint normal-strength beer/lager/cider, or 2 glasses of wine totalling 1/3 of a bottle; or 2 single shots of spirits), and 10 or fewer mild cigarettes a day. Try giving yourself some non-alcohol days to let your liver have a rest.
- It's important to keep yourself entertained as much as possible. Not only does this stave off boredom and stimulate you so you feel better, it also means you spend less time in negative thinking and feeling. You also feel pain less when you can distract yourself from it. Though you may no longer be a star of the tennis-courts or dance-floor, what can you do, despite limited mobility and concentration, to keep yourself entertained? It could be useful to write your own list, but here are some suggestions.
1) Read. If your concentration and alertness are poor, try children's books, or magazines, up-beat short stories or easy reading such as clogs-and-shawls or simple thrillers. Libraries now have easy reading sections where adult authors such as Maeve Binchy have written very accessible materials.
2) Listen to short stories or novels on Radio 7 or Radio 4, or buy or borrow talking books from the library. (Can help you fall asleep too!)
3) Anything creative is particularly useful for improving mood and concentration. Try getting yourself a colouring-in book and some coloured pencils; painting; glass-painting; pottery; embroidery, tapestry, cross-stitch, petit-point, applique, macrame, crochet; candle-carving; calligraphy; origami; stencils; card-making; wax-painting; small-scale gardening etc.; keeping a journal; writing poems or short fiction; finding a pen-friend; online chat-rooms (but remember basic internet safety and don't give too much personal information away).
4) Watch selected TV or DVDs. If you have a laptop you can watch a film in bed if you like.
5) Phone friends for a chat or invite them round if you're up to it. Sometimes you have to put up with better-than-nothing friendships while you're recovering. Don't forget to mention briefly how you're feeling so they know, but don't harp on about it as this is off-putting.
6) If you have the energy, it's worth finding your Council's IT classes or an adult education or interest group.
7) If you're over 55 you can contact Age Concern and ask for a befriender who will ring you for a chat. The religious leader at churches, synagogues etc. could also find someone to visit you or help you out.
8) Listen to uplifting music, or find confidence-building or relaxation tapes.
9) If possible, spend time in fresh air and sunshine, either with a short walk or just sitting relaxing.
Stages of recovery
Recovery tends to be fairly slow so it's easy not to notice improvements. Or you might assign them little value because you compare with what you used to be able to do instead of with what you could do when you first became ill. In fact recognising and celebrating signs of recovery is very good for boosting hope and optimism. This helps because stress and depression are additional loads for the immune system to handle, so if you lift your mood, you'll not only feel better, you're likely to start improving your health too. Even if you don't get to the point you'd ideally like to get to, you're the one who experiences your moods, so it's in your best interests to remember the old maxim:
If you can't be cheerful, be as cheerful as you can.
1) Activity Levels
- can't do tasks, even basics like getting up, washed and dressed
- can do minimal tasks for a short time
- can do more minimal tasks, or the same number but for a few minutes longer
- can do a reasonable amount
- can do one small task fully
- can do several tasks fully
- can do all the activities you'd like to do
2) Comfort Levels
- pains and fatigue prevent you doing all tasks
- pains and fatigue prevent you doing most tasks
- can do one small task despite pain and fatigue
- aches, weakness and fever occur immediately after the task
- aches, weakness and fever occur longer and longer after the task, e.g. next day, 2 - 6 days later, a week later.
3) Thinking Levels
- Always muzzy-headed, confused, not able to take things in properly
- Starting to think a bit more clearly some of the time
- Thinking quite clearly half of the time
- Thinking quite clearly most of the time
- Back to your old levels of clear thinking
Recovery is possible. Periods of remission should be enjoyed, but don't forget to pace yourself! Do your best to keep upbeat, and work within your current limitations to enjoy your time as fully as you can right now. If money is an issue, find out about doing some work at your own pace from home. Maintain social contacts with nice people if you can.
And remember: you didn't cause this. Like flu or an accident, it just happened, so don't blame yourself or beat yourself up about it.
I wish you confidence, good health and happiness.