My view of CFS/ME
There are few CFS/ME ‘friendly’ GPs. Most GPs do not know how to treat CFS/ME and yet many patients with CFS/ME prefer to follow what their GP tells them. I find this ironic and do wonder if some CFS/ME patients remain more ill for a longer period of time because they are following their GP’s advice rather than following their own ideas and feelings concerning their own body. Even a specialist I know a very nice and highly experienced man cannot offer a foolproof method of healing for CFS/ME.

What follows is my view on CFS/ME based on my CFS/ME journey of 5 years. The last few months proving to be the most helpful and revealing of all.

GP’s in this country (UK) call it CFS or Chronic Fatigue Syndrome.
M.E people prefer to call it M.E. A compromise has been reached and it is generally known as CFS/ME.

ME – Myalgic encephalomyelitis means inflammation of the brain. I think this name and its meaning is misleading because research appears to be illustrating that it is only a part of the brain, the hypothalamus and the flow of cerebrospinal fluid that is upset.

Many therapies that say they can help CFS/ME all say it is something to do with the hypothalamus – a small gland in the brain that is a control mechanism.

Another therapy supported by research, papers and clinical trials states that it is not only the hypothalamus that is malfunctioning but the fluid around the brain is not draining adequately causing a knock-on effect to the hypothalamus.

That therapy is the Perrin Technique. The therapy itself explains Dr Perrin’s theories, his research, his trials and his experience on what causes CFS/ME and also offers a treatment programme. There is more about The Perrin Technique at the end of this document. I think it makes very interesting reasoning and offers a highly acceptable explanation of why people suffer with CFS/ME and have the symptoms they do. I believe it is the only theory that offers an explanation for all the symptoms of CFS/ME.

Having to live with not knowing what is wrong with you is terrible as the temptation to consider anything from cancer to madness can’t help be thought. So don’t.

I think it is very important to remember that you are physically ill not mentally ill. You have a physical problem.

Problem is a good word too. It suggests that a mechanism or mechanisms in the body is/are not working optimally.

You may also find you are allergic to foods more than you were. This is because of the immune system which is affected by the condition.

What to do when you are first diagnosed:
Accept your diagnosis, this is the first stage to getting better.
Do not rush out to find a cure.
Do not be lured by magic bullet cures.

Do accept the GP’s offer of sick leave and take it.
Do give up work totally to rest and put in a claim for Incapacity Benefit and Disability Living Allowance.
Avoid stress when reasonable to do so.
Try not to wrap oneself up in ‘cotton wool’.

Do what your body wants you to do.

Rest when you want to – try and rest in between doing small tasks. (long rests, short tasks)
Get up when you want to – try to be up by 11am at the latest.
Shower when you want to – try and make it once a day or at least a strip wash.
Eat when you want to – try and make it three times a day.
Drink when you want to – try and make it at least ½ pint times 6 times a day.

If you succumb to someone’s germs:
Remember that because of your physical condition, you will feel worse when you succumb to infections. It can’t always be avoided.
You may not get the ‘cold’ or ‘flu’ symptoms like other people you may have a worsening of your own ‘ME’ symptoms. This is normal for ME people.
It is depressing too but if you think of it as being ill in a similar way to the friend who was ill with a cold and that you will have better days it is easier to cope with.
Encounters with infection cannot be avoided and it is not a good idea to isolate oneself ‘just in case’ as that is even more depressing.
Depressing and negative situations SUPPRESS the immune system even a negative remark can pull you down further than you would normally expect. While you cannot always avoid these situations, bear in mind that if they do occur you will need to give yourself extra kindness and support!!

You can give your immune system an extra boost when infection or ‘germs’ present themselves with freshly squeezed cloudy-apple juice or orange juice, Echinacea tablets or the tea, and ginseng and many other products on the market.

Also Consider:

• Do not eat any foods or drinks you suspect may upset you.
• Avoid all manufactured foods.
• Avoid additives and synthetic chemicals including those in foods, cosmetics (including sunscreens – very bad for everyone) and cleaning products.
• Avoid highly perfumed flowers.
• Aim to eat 4 ounces of 1st class protein a day. (see below for explanation of 1st and 2nd class proteins)
• Aim to eat an apple, a banana and an orange every day.
• Aim to drink water (hot or cold) instead of teas, coffees, fruit teas, cocoa cola or sugary drinks.
• Avoid the drinks where a bag is used and use non-bleached bags if necessary.
• If you drink coffee, drink only ‘proper’ or freshly brewed coffee, this is because I suspect that instant ‘freeze-dried’ coffee has been freeze-dried using wheat or some other grain. Instant coffee makes me ill. Drink only one or two cups a day preferably in the morning.
• Avoid or reduce alcohol you may be able to tolerate vodka from potatoes not from grain, Smirnoff is made from potatoes cheaper versions are generally made from grains.

If you need painkillers, check with your GP what you can take but avoid all drugs if possible. There are no drugs that can help CFS/ME. There are two types of drugs a GP may offer – antibiotics and anti-depressants, to help the symptoms only. They are not a cure. If you take the drugs offered by the GP remember they may have side-effects or contain allergens. Sometimes drugs are helpful when the symptom is more than you can cope with.

Caffeine is a natural painkiller which may help. Or take a simple pain killer without any fillers and binders that you may be allergic to. I can only tolerate Anadin Extra.

Avoid all soya products as soya affects the thyroid gland causing ill health.

Avoid all margarines and low fat spreads as the manner of manufacture interferes with the workings of the hormonal system.

Supplements that help most CFS/ME people:

• Fish oils (Omega 3)
• Evening Primrose oil (Omega 6)
• Calcium, Magnesium and Zinc
• Vitamin D but I cannot find one without allergens
• Vitamin B complex but I cannot find one without allergens. I get my Vitamin B from bananas, nuts, wholegrain rice and meats.
• Vitamin C but I cannot find one without allergens. I get my Vit C from organic apples and/or cloudy freshly pressed apple juice. (apples are amazingly good for you!)
• Digestive enzymes (ones without allergens – Quest’s Enzyme Digest)

BE WARY of all ingredients’ listings especially those that tell you No Added. It means that something may have been added by the manufacturers of the original product.

( for example: a supplement company’s vitamin B supplement says NO ADDED Wheat etc, but the ingredient listing says maltodextrin. The supplement company bought the maltodextrin in from another source and didn’t check what it was made from. Maltodextrin can be made from corn but is sometimes made from wheat. This is why the supplement companies now say NO ADDED. They are protecting themselves. I was very ill when I took a Vitamin B supplement that stated No Added Wheat and it had maltodextrin in. I can tolerate corn but not wheat. )

The fish oils to take are Omega 3 Pharmaceutical Grade which means they have been screened from toxins and are from fish from unpolluted seas (North Atlantic)
There is a fish oil called VegEPA that many people with CFS/ME favour but I cannot tolerate it as the capsule it comes in has sorbitol in which brings me out in a rash.

The oil I take is called Omax3 which is the richest purest form of EPA/DHA found in fish oils that the brain requires. The fish oils help the foggy thinking that most if not all CFS/ME people suffer with and they also help with sleep. They also help cholesterol and keep the levels healthy.

You may need Evening Primrose oil which is Omega 6 but these days the foods we eat contain Omega 6 (from seeds like sunflower, soya, flaxseed and evening primroses), so if you are eating sunflower seeds you may not need the evening primrose supplement.

Calcium and Magnesium is involved in the energy cycle and with every cell in the body. Calcium is extremely important and contrary to popular opinion large doses will not cause kidney stones. A lack of magnesium can cause kidney stones. Magnesium is required but in lesser amounts. It is important to take Calcium in the right ratio with magnesium. I use Solgar’s Calcium, Magnesium and Zinc supplement.

If you suffer with palpitations, low breathing, muscle spasms and cramps, sleep problems, sweating, anxiety, nervousness, irrational fears – the calcium, magnesium and zinc supplement may help. (It has hugely helped me and every time I run out, my muscle spasms, palpitations, sleeplessness and anxiousness returns)

Vitamin D helps the body utilise calcium. I cannot find a Vitamin D supplement that does not contain ingredients that I am allergic to. The active ingredient in most Vitamin D supplements is from animal fat and generally in a supplement the oil from sheep’s wool is used – lanolin. Vitamin D is made in the skin by the sun shining on it and stored in fat. Good quality animal fat is good for you, but in small amounts – animal skin with the fat, organic ‘proper’ dripping, butter etc. Fish oils also contain Vitamin D.

To gain Vitamin D from daylight, sit in the sun or daylight for 20 minutes a day, with eyes closed but face pointing up to the light.

Many CFS/ME people are (some more than others) intolerant to light, sound, smells, talking, touch. Basically the body is exhausted (meaning depleted of nutrients) and cannot tolerate anything and simply needs to rest. (Rest being lying down flat in a shaded, cool but not cold, warm but not hot, silent room)

There is danger of too much rest and this state can become ‘set’ in an ill person, so that they crave the silence, darkness and stillness and cannot move their own bodies which in turn may make them even more ill. In this situation it is very important that the patient themselves decides to move or change their situation rather than being persuaded by a third party. Encouragement is good, but the patient’s decisions must be accepted and respected.

The calcium, magnesium and zinc supplement can help with this as it provides the ‘strength’ to get up to go to the loo for example.

It is a shock to the body and mind to find oneself diagnosed with the CFS/ME condition. Shock makes one tired naturally as the ‘shock’ depletes the body of vital nutrients. The reaction is to rest and stay in bed where it is comfortable, warm and safe.

I believe this reaction does not always help CFS/ME. When I was first diagnosed I did rest because I could hardly walk and going up and downstairs or to the bathroom was a dizzy, heart palpitation, muscle aching nightmare. So I rested more and more. I went from working very hard and suffering with mental disturbances, complete lack of sleep, dreadful sweating, terrible indigestion to not being able to do anything and then when I did do something my symptoms were: almost painful palpitations, muscle aches and shakes, cramps and spasms, dizziness, not understanding anything I was told, not being able to be coherent, terrible sweating, feeling faint.

I now think that I should have simply given up work straight away instead of ‘going part time’. I should have stopped work completely, when taking a month off didn’t solve the problems. It was when I stopped work, stopped all advice and ate what foods suited me that I began to feel slightly better.

In the beginning I listened to everyone and what would get me well. I took a huge array of supplements on the advice of my Nutritionist and became even more ill. She even told me to eat far more protein than necessary and to avoid all calcium. I stopped the supplements and eating regime and felt better and have been ‘organising’ my own programme of getting better myself ever since and I am getting better! Much to my surprise!

An Occupational Therapist told me about the theory of ‘Pillars of Rest’ but I found this exhausting to do, forever timing myself to get up and do and then to change and go back to rest for a set time.

I found the best method is to do what you feel is right for you and not to be tempted to stay in bed all day and every day. I do still have ‘stay-in-bed’ days. But even then I get myself up to go to the loo or wander around the house so there is some movement. I feed myself although on those days it is very simple food like: nibbling on bananas, lettuce, rice cakes, plain crisps or brazil nuts and drinking bottled water and freshly squeezed fruit juices. On those days I can only eat in a semi-reclined position and small amounts because the need to lie flat is overwhelming. I think this need to lie flat is due to calcium and magnesium depletion.

Calcium is depleted by eating protein, stress (which includes a huge spectrum of things including an unkind remark!) and caffeine among other things. Protein in particular requires a lot of calcium when being digested. The reaction to stress requires calcium. All digestion requires calcium. Caffeine in teas and coffee requires calcium. Muscles including the heart muscles and eyes muscles (hence the sensitivity to light) require calcium. Energy requires calcium. Calcium is also depleted when eating allergens too and extra calcium can help overcome the allergen.

The body does not take the calcium from milk or milk products very efficiently. The best sources of calcium are bones, rock, good quality drinking water, green leafy vegetables and some nuts and dried seeds.

When you do feel exhausted, you may also find it difficult to digest your food. This is because the brain naturally diverts blood to the digestive organs when you are eating and this may further exhaust an ‘ill’ body and may bring you out in a sweat and feeling ill and the need to lie down. Bear this in mind and eat easily digestible foods like eggs, fish or soups on very bad days. Pulses are difficult to digest and can cause putrefaction of the digestive tract which in turn upsets the gut flora, as pulses are rich in protein so they will also compete with calcium for digestion.

Reading this, one can perhaps see why one has become ill or exhausted. A poor diet coupled with a lot of stress is one cause. A good diet but a poor digestive system plus stress, illness or both is also going to make one ill. Stress will deplete the digestive system.

The stress reaction, in other words to cope with stress, extra nutrients are required and those nutrients are the exact same ones that keep the gut healthy. If the reaction to stress cannot find the nutrients it requires in the body, it will rob them from the gut; hence the gut becoming unhealthy because of stress and the body becoming ill because of the gut. Healthy gut needs all the nutrients the adrenal glands need to activate adrenaline when we are stressed. Omega 3 fish oils, zinc, Vit B complex and Vit C.

When your diet improves you will also find that you cope and rationalise a stressful situation more readily. For this reason I do wonder if the old fashioned term Nervous Breakdown and ME are linked.

My symptoms of CFS/ME improved almost immediately I started taking:
The good quality fish oils – it improved my foggy thinking and my sleep.
The calcium, magnesium and zinc supplement – my muscle spasms, cramps, palpitations, anxiousness, nervousness and sleep all improved 100%.

When I started the Perrin Technique I was almost blown away by the continuous flow of energy one day (after about the 3rd or 4th treatment) – I kept thinking that I would break out in a sweat soon, I would be breathless, I would feel faint or dizzy, I would have to sit down if not lie down soon, but those symptoms never arrived. I was gardening and in particular chopping at some long boughs that needed pruning. I had to climb half up into the trees themselves to get at the branches. I felt on top of the activity rather than the activity making me feel it was squashing me. Generally in the past anything I did would feel like I was climbing Mount Everest and the reaction afterwards would be to lie down for a couple of days. The following day there was no adverse reaction.

This is not the case for everyone who follows the Perrin Technique. Most will feel worse before they feel better and Dr Raymond Perrin does suggest that it can take up to two years before one can feel really well. The treatment plan is to have a treatment once a week, then once every two weeks and then every month.

For me the Omax3 fish oils, the Solgar Calcium, Magnesium and Zinc tablets and the Perrin Technique appear to be a winning combination.

PROTEIN

There are two types of protein – essential (1st Class) and non-essential (2nd Class).

Protein is broken down in the body to amino acids.

Essential amino acids are those amino acids that the body MUST have to survive which is why they are called Essential and there are 8 of them.

1st Class Protein
A 1st class protein is one that contains all 8 of the essential amino acids our bodies need. From these 8 essential amino acids, the body makes other non-essential amino acids.
1st Class Proteins include: meat from fish, birds or animals, milk and milk products and eggs.

2nd Class Protein
A 2nd class protein is one that does not contain all 8 of the essential amino acids which means that it cannot make other amino acids successfully. However it is possible to combine some 2nd class proteins together to obtain the 8 essential amino acids. I personally think this is a bit like Russian roulette and you would have to be a scientist trained in the field of amino acids to know which ones worked with which. Rice and peas for example would give you all 8 of the essential amino acids.
2nd class proteins include: pulses, seeds, grains, nuts, fungi/yeast and some vegetables ie green peas and sweet corn.

The Perrin Technique

Dr Raymond Perrin, Osteopath, first discovered a reason for the condition CFS/ME when he ‘accidentally’ cured a patient from CFS/ME in 1989. He was treating a cyclist for back problems and the cyclist after several treatments told Dr Perrin that he had cured his CFS/ME. In those days Dr Perrin didn’t understand CFS/ME and thought along the same lines as others and that it was all in the mind. He didn’t therefore go out to cure the cyclist’s CFS/ME but looked at his back concerns. He didn’t believe the cyclist at first but he became so insistent that Dr Perrin then conducted research and trials.

His discoveries have been published in papers and cite many Researcher’s and Scientist’s papers and theories and he has been asked to present his findings to Scientists at the University of Southampton. He has also written a very easy to read and understand book which lists over 600 papers.

The body produces a fluid called Lymph that takes nutrients to cells and takes the toxins out of the body’s tissues to glands at many sites in the body for breakdown and elimination. The brain also produces a fluid – cerebrospinal fluid that supplies nutrients to cells and eliminates toxins from the brain and spine by flowing through sinuses in the head and spine, into the tissue spaces to be carried away by the lymph. When the lymph and cerebrospinal fluid do not flow adequately a backflow is caused between the Thymus and the Subclavian veins. The Thymus receives all the lymphatic fluid from the whole body and drains it up into the subclavian veins which then take the fluid via the blood to the kidneys for elimination.

Dr Perrin has found lymph vessels in the chest area looking like varicose veins in severely effected people. However these cannot be seen in most CFS/ME people but can be felt by Osteopaths trained in his technique.

Dr Perrin has found consistencies with CFS/ME sufferer’s thoracic spine, back pain and neck pain and a misalignment of these areas. There are also similar points of pain and sensitivity in all CFS/ME people he has conducted research on and those he has treated.

Dr Perrin’s treatment plan aims to clear the congestion from the brain, spine and thymus and to encourage its proper flow. His treatment includes: massage, cranial osteopathy, supplements, diet and certain ‘exercises’ to be completed daily at home. I would also include that part of his treatment is reading his book so that you understand his theories and therefore your own condition.