A Personal Action Plan for ME/CFS


Introduction

After 20 years of counselling ME patients, I have no doubt that the only real solution to having ME is to get better. From my extensive observations of ME, it seems that those not getting better are getting worse. Some eventually make a mistake in pacing and end up in a wheelchair, or in much more pain and desperation. Putting a full, personal, action plan into operation at the first opportunity is the most positive course. The earlier the better, since the body has less time to get into the "wrong pattern". (After reading this page, see the dietary food regime on "High Energy Foods" page).

Loss of earnings and relationships

ME wastes years of life's earning potential. It can lead the break of relationships, even the closest. People abandon you because of your ME. You will have real financial difficulties. I have heard of professionals, even doctors with ME, ending up in empty rooms, abandoned by their families and the welfare services. ME sufferers who never get better are left in a completely powerless state, a plight like that of “Job” in the Bible, who ends up disabled on the rubbish dump outside his home town. Being confined in a wheelchair with ME is a very painful experience: some of my best friends are in this state.

A Duty to Fight ME

In my experience, many very intelligent ME sufferers make the wrong decisions when they get ME. They do not evaluate potential treatments carefully enough, lack basic "common sense" (eat organic foods like sausages but fail to eat organic vegetables and fruits which is a quite different diet) or they try endless remedies in the mistaken impression that there is, or ever will be, "a magic bullet". In this way, they exhaust their emotional and financial resources. My advice is: don't waste your time and resources. Don't be taken in by promises of "quick fixes". Your body may have taken some years to get into this state and it will take some time to get out. As for claims of "getting better" with X or Y, don't believe them. Many ME people with think "getting better" is when they lose one ME symptom (not when they get back to full time work). Something happens in the brains of people with ME that prevents them remembering what normal health feels like and judging properly what being well or ill is. Being well is being able to work full time at a demanding job and go out in the evening, not being able to sit upright for most of the day at home - in a chair. The people who get better are those who evaluate ME treatments the best, use their common sense, take the 'long route' and have deep inner resources of patience and determination. You have a duty to fight ME for your own sake, for the sake of your family, for other sufferers, to relieve the state of a burden and for society as a whole.

There is no promise on this site (or anywhere else) that you will get 100% or even 90% better. If you do not win the battle, then you have done all you can and you can lie back, deeply proud of your courage and superhuman endurance and just hang on. (Tie a knot in your rope and hang onto it). Think of best-selling authors Shirley Conran and Clare Francis who have had ME all their lives, but managed to earn a living, at great personal cost. But if you want to get better and fully contribute again, doing what you want to do, not what you do not want to do - then take note. There is a Gospel story about Jesus asking the disabled man at the Pool side "Do you want to be healed?". That is the real question! Getting better means earning your own living and facing life. It means experiencing new places, people, achievements, joy and pains. But staying ill, means being further and further marginalised until your life is so dreary that the boredom is stressful in itself. You must make the choice for life: the other option is not worth thinking about except for the very strong.

The Draining "Politics" of ME

Don't waste your precious energy fighting head to head ‘political’ battles with doctors, insurance companies and specialists, even tribunals about whether you have ME or the causes of ME. What does it matter? What is the point of winning a few thousands in a tribunal but never getting better? Having said, that I admire the ones who do fight. But a working income is for life. If you are fit, you will get a much higher income - from being able to do a job or holding your marriage together.

Finding out the Secrets of How the Body Works

ME is such a complex condition. It feels as if it has infiltrated one's very DNA. Nothing short of finding out how the body works will cure it. One must become doctor and researcher, using one's own body as a tool to understanding. In ME, one starts by keeping a meticulous notebook of reactions to various challenges and foods and analysing what supports your fight with ME and what does not. In doing so, you are not only overcoming ME but also aiding your body in its defences against many other illnesses. You are working with your body and its limitations, not against it. Your body has at last got your full attention! Then, something wonderful happens. At the end of my own battle with ME, I was told by my GP that I have "high quality blood". Well, no surprises! I had studied how my body thrives and what it needs. It has rewarded me with general health and welbeing.

Developing Perfect Pacing

If you have ME, you should aim to increase the amount you can do very slightly each month, not by force of will, or by external behavioural conditioning (since mind over matter in ME is not something that will strengthen the immune system). Your priority is to improving your immune system which is the vitality and strength of the body. Your immune system is impaired in some way. You have not ‘given yourself’ this illness by stressing yourself, having a perfectionist lifestyle, by growing up with ‘uncaring parents’, or by taking the knocks of life too hard. Never finding the right life partner has not given you ME. There is something wrong with your immune system and it needs help and support.

Your body possibly has a problem of reacting too strongly to stimuli + a compromised immune system (genetically), so you may need to live within limits, respecting your own body and learning how to cope with life stresses - within those limits. You are different from others, so just be yourself and do not compete or emulate the lifestyle of others. The ME rule is : only do 70% of what you are capable of until you are 95% well.

The Brightest and Best

There is nothing mentally, psychologically or emotionally wrong with ME sufferers. In fact, they are some of the best people around! There is nothing to be ashamed about in having ME. You are in great company! You may just be a poetic, creative person who in another slower age would have flourished. People who are the leaders in their field get ME: Clare Francis, Duchess of York, Michael Mayne the Dean of Westminster, John Rutter, Shirley Conran, to name but a few. There are sensitive pastors, clergy, church workers, preachers with ME. In fact, having ME is almost a badge of honour! People who got TB in the 19th century were the very sensitive ones.

Also, amazingly, ME seems to make people more creative. ME gives depth - where before there was superficiality. It creates motive and engagement, where before there was complacency. A recent Hollywood film "Sea Biscuit" about an small horse who wins the greatest race, was, unsurprisingly, written by someone with ME. It may be that writing and creating are some of the few things left to people in ME. The famous people above have written books and music and have been creative in ME. Freida Hughes, poet Ted Hughes^' daughter had her poetry about ME recently published in the Times (see my "Poems" page). We can expect more artistic achivements from ME. Experience suggests that sensitive responsive, generous and mature people get ME.

No cure or magic bullet

Western medicine has a very poor track record in curing chronic illnesses. There is no cure for MS or Parkinsons, for example. Listen with caution to researchers' claims about "a possible cure in 5 years". It may be that in 5 years your ME will not respond, you will not be able to take the drugs prescribed or you will not tolerate the side effects. Also who says that the drugs will not kill you in other ways?

Knowing what causes ME may not help you get better either. If the research points to faulty genes, how does one correct faulty genes?

The answer is: maximise the natural health of the body and allow it to compensate for whatever weakness there is in your genes. Some treatments or interventions may appear to work for a short time, but they are not ‘cures’ either. Some people try a quick fix treatment, think they are better, stop pacing themselves, overstretch themselves and they suddenly slip back to a state worse than the one at the start. So be warned about "quick fixes" and miracles cures!

Tackling ME through a Change of LIfestyle

One can control, if not cure ME through a demanding, disciplined change of lifestyle and diet, by continually pacing oneself, even when apparently living normally and using other interventions to reach the point where one’s capacity can reasonably match the capacity of a healthy person’s body - but never without totally exhausting all physical resources.

I have noticed that the people who get better:

  • work at the ME Action Plan (below) as if it were a job
  • sometimes tire themselves in caring for others with ME and get real fulfilment in doing so
  • want to get better more than anything else
  • have rich inner resources
  • don’t believe in quick fixes.

Of course, this is not to condemn others who try this Action Plan (perhaps they do not do it 100%) and do not progress. But focussing on changing your diet and lifestyle early on seems to increase your chance of a real breakthrough. Determination and perseverance is the key.

The Action Plan for Recovery – ‘Charging the Battery’


A word of warning: When you start to treat ME/CFS with diet, you may have to got through a short period of change and in some sense increased instability. For example, as you start to take garlic (below) you may start to suffer from the "die off" from the toxins in the digestive system which could cause depression, acne etc. As you come off wheat you will find that other reactions happen. You should take any treatment plan in ME slowly, particularly if you have had ME for a long time, as the body is highly reactive and fragile.. Listen to your reactions, respect them, judge them carefully, ask questions and read the Q&A page on this site. Go slowly for periods to allow it space to readjust. If you get things happening that are new or odd, email me and I will share the knowledge I have. If you suffer any acute reactions, see a doctor immediately. The reaction may not have anything to do with the change in diet: so please do not assume that they do.

Positive Interventions to boost the immune system function in ME:
  • High raw diet (read Leslie Kenton’s book on the “Raw Energy”)
  • Garlic treatment (see website section on Diet). Garlic and olive oil kill the candida/yeasts which is a key factor in the fatigue in FM and ME/CFS. Look at your tongue: if it is coated and has "crevices" then you are infected with yeast. You need at first to take a sixth to half a clove (not a bulb) of fresh, finely chopped and crushed organic garlic, with food, medicinally every other day or even less frequently. Measure the dose carefully, decrease and increase in response to symptoms and how you feel. Garlic can be as effective as anti-candida drugs which are required in ME to kill candida (yeasts), though expect symptoms to worsen before getting better as the immune system starts to produce symptoms of infection (e.g. after some months a sore throat may develop as the immune system start to be able to fight) and there are toxins circulating in the bloodstream. NB If you feel really awful, stop for a few days and start again later. If you cannot tolerate garlic at all, you may need to go on anti-yeast drugs under the supervision of a professional doctor. Read Dr Leon Chaitow's book: "Is Yeast your problem?" But not being able to tolerate garlic may not be the problem. If you get new symptoms like increased "poisoned feelings", depression or acne after starting garlic, it is very likely that it is due to the garlic attacking the bad bacteria in the digestive system and releasing toxins into the rest of the body. If you feel really awful and if you feel unusually depressed or get headaches, stop the garlic all together for a few days, to stabilse. Then start again, at a much lower dose and gradually built it up again. One has to go through a detox phase like this at the start: the main bulk of the toxins must start to be released and eradicated from the body. They are part of what is making you feel so ill in ME/CFS. Do not get depressed to the point where you are unable to function.
  • Resting regularly lying flat on the floor with your head on a cushion and your knees half drawn up, listening to Mozart or other classical music (see our "Music" page). See advice on "Doing Nothing" on http://www.wikihow.com/Do-Nothing (Please ignore the "sickness advice" unless you want to consider how to try to describe ME to your boss).
  • Have your allergies tested by blood tests under professional supervision and strenuously avoid them all and/or find a successful allergy desensitization treatment.
  • Eat organic vegetables and fruits (not just "organic foods" by themselves), raw and in soups, preferably green, with garlic (see "Recipes" pages).
  • Recognise that you have a serious hidden disability and educate yourself (see Employment page) about the laws on disability, workplace adjustments, employment law and rights in the workplace etc.
  • Join a Union at work.
  • Have a siesta or nap in the afternoon and take gentle exercise at other times
  • Get to bed early and never stay up until midnight
  • Belong to a small private caring group of fellow ME patients in contact over the phone or internet
  • Music and art self-therapy (see here for our page explaining "Turner" therapy)
  • Read up on the dress code and do it, on a budget. I got a new social life doing this, as I got better. I bought a few clothes (secondhand) according to the "rules". I soon found myself, without trying, with charming, kind people who accepted ME/CFS and helped me to get over it. Men with ME/CFS can revive their social lives reading http://www.askandyaboutclothes.com/Index.htm
  • Make your surroundings pleasant and emotionally supportive, using non-allergenic paints
  • Change your lighting to adjustable lighting rather than florescent yellow lighting (which drains T cells). Softer daylight adjustable lighting (in offices) helps cure photophobia in ME.
  • Avoid people who stress or drain you, especially bulllies and those who manipulate you emotionally. Master assertiveness.
  • Find interesting things to do apart from thinking about getting better e.g. take up drawing or interior design (a useful home skill)
  • Read up about bullying, and personality disorders to learn how to handle aggression in others
  • Care for others with ME, through email or internet or phone support - this helps adrenal glands to work and is fulfilling.
  • Maintain hope through spiritual means (see "Finding Meaning page").
  • Handle your past distresses (invisible wounds)
  • Have fun every day - watch funny films like "Mr Bean"
  • Do our immune boosting T-cell boosting activities - click here
  • Maintain a hobby either which you enjoy a lot or one which might later aid your career development (not mutually exclusive).
  • Think positively about having ME. ME can be a blessing in heavy disguise: you can create art, find your real identity and meaning through ME.
  • Try not to get into a "victim mentality" over ME/CFS. Coexist with it. Do not complain about it and get angry. Anger is not healing. Acceptance/coexistance is a start to positive thinking and finding creative coping strategies..
  • Avoid all alcohol, until you are able to work full-time (it has toxic effects).
  • Take vitamins and minerals, especially a non-allergenic multi-vitamin.
  • Wear dark sunglasses, a hat and cover up in the sun (the sun radically depletes T cells although a little might do you some good).
  • Get broadband (a window on the world) and use computer adjustments like a track-ball mouse to prevent RSI and a protective screen.
  • Buy Nordic Walking Poles to go out walking - they save a lot of the energy expended in simply walking.
  • Plan a holiday and use the advice on our Holidays page to help you avoid pitfalls.

Things to Avoid in ME - ‘Discharging the Battery’


These things deplete the immune system and in extreme cases can cause death:
  • Avoid all over-stimulation to the immune system and central nervous system e.g. strong sunlight, loud noises, rock music, yellow florescent lighting, household chemicals, tar, fumes from new carpets, creosote, innoculations, drugs and operations, vinyl paints, high heels, extremes of hot and cold, hot baths at night when you are tired.
  • Swimming, running, mountain climbing, bicycling, weight training, athletics.
  • Legal and tribunal cases if you can, even if the law seems to be on your side. Currently only 18% of disabilty cases are won in UK tribunals, including those on ME. Court cases are very stressful and time consuming. The stress could make you permanently ill, even if you win. It is better to be well and earning money than being too ill to work.
  • Arguments and confrontations - which deplete T cells
  • Shocks, especially emotional shocks - which deplete T cells
  • Violence (ditto)
  • Bulllies and bullying at work and at home, people with personality disorders (see Wikipedia page on Personality Disorders)
  • Regret over broken romantic relationships and marriages (it was the wrong person for you especially if they left you when you first got ME!) .Worship the Creator not the creature.
  • Overwork over weeks, months or years
  • Allergens, especially wheat and your food allergies
  • Sugar and chocolate, until you are working part time
  • Monosodium glutamate (MSG) from now on and yeasty foods (until you are fully well)
  • All colourings, preservatives and E-numbers in foods (from the rest of your life)
  • Processed foods (ditto)
  • Insect bites and insect repellents (for the rest of your life)
  • Tetanus and tetanus jabs (ditto)
  • Traffic fumes - if you can
  • Perfumes (for the rest of your life)
  • Long haul flights without drinking water all the time (this prevents getting viruses). See "Holidays" page
  • People with infections and children with colds
  • Working in the teaching and nursing professions (these have the highest rate of ME sufferers)
  • Lifting any weights (including shopping) - get a trolley. A heavy weight could cause relapse or even sudden death.
  • New relationships with people who are not quite the ‘right person’ even if in some ways helpful. You are better off in ME without a demanding partner, because incompatibility drains the immune system
  • Avoid getting involved with very high fliers, creative geniuses and performing artists who can be very draining on the immune system - some of them take all your energy and give it out to audiences!
  • People who make abusive comments and overtly refuse to believe that you are physically ill: they are not your real friends or they would believe you. Real friends will always believe you.
  • Forgive those who do not understand - you did not understand "invisibility" in conditions, before you got ill.
  • Pushing your brain too hard, particularly when you are tired
  • Going to bed later than 11pm. Continue this for the rest of your life.
  • Depression and thoughts, photos and memories that make you feel depressed.

ME is a huge test of good judgment, inner resources, intelligence and motivation. There are very few people who master the coping strategy of ME. I repeat: if you are not getting better from ME, you are getting worse. You need strong motivation to do it all. Sometimes a touch of desperation is the incentive that pushes one forward. Desperation is not a bad thing in ME/CFS!

Few sufferers do the healing high raw, organic vegetable diet 100%, take garlic regulary and live well within their limits. Instead, many intelligent people carry on living miserably, complaining about ME and fail to get a grip on it. Astonishingly, many are unwilling to give up favourite foods ("their addictions") even for the sake of getting better. But many of those who do not change their lifestyle are now in wheelchairs and either utterly abandoned or completely marginalised. Looking back, many wish they had taken better decisions about which treatments to do, particulary when they see others getting back to work, life and health.

My advice is : if you want to live again, do this regime 100% (within reason)! If you want to go on suffering indefinitely, don't. You have no time to lose. ME is ruthless. It has no discrimination and no pity, whatsover. Nor does Western society when it comes to ME/CFS.