Book Review by Chris Baxter of the Tendring M.E. Group
Dr Sarah Myhill’s CFS book on diagnosing and treating M.E. can be downloaded free (she calls it CFS). It is in pdf format and is located at http://www.drmyhill.co.uk/cfs_book.pdf. It is very, very helpful information, but does take some reading through.
If you decide, after reading the book or even without the book, that you want help from Dr. Myhill, it does cost quite a bit for the various blood tests, but once that is done it is mainly supplements you would need to pay for. I realise this would be too much for those of you living on benefits, which is something I need to bring to the attention of our local MP when I see him. It is wrong when somebody is very ill and their doctor says he/she is unable to help them that they have to pay a private doctor in order to get help and their benefit is so poor that they cannot do that. Actually, I understand that some of the tests can be done on the NHS if your doctor will co-operate. Also you should be able to get vitamin B injections and magnesium injections on the NHS if you need them.
Dr. Myhill is not taking on new patients at present, but her office staff can still help you. If you decide to get help from her, you are sent a questionnaire. Dr. Myhill reads that and as a result of the information you send, she suggests various blood tests which obviously cost quite a bit. When the results are sent to her, she sends a letter to your doctor (you have to pay for that) suggests suitable treatment and she advises you on suitable supplements, which you can buy from her. It is good to have these blood tests, if you can possibly afford them, as they do point to exactly what is wrong with you.
Dr Myhill calls M.E. chronic fatigue syndrome but she is talking about the same illness. She says that the first thing to do is to make sure you have the diagnosis right. On page 24 she lists the symptoms and if you don’t have those symptoms, you may well have something else wrong with you. I’ve had every symptom on that page. Dr. Myhill thinks that M.E./C.F.S. is a symptom of mitochondrial malfunction and suggests possible reasons:
On page 27 Dr. Myhill describes the tests done by most doctors and explains the mild abnormalities that she looks for. She then goes on to explain the further tests that she herself does with her own patients (pages 27–29). She tells you how to get help from your own doctor (pages 31-32). Next she suggests the means of recovery, which need to be done in the correct order, starting with:
Foundation Stones: which are sleep, diet, pacing and micronutrients. You need to get these right before doing anything else.
A. Sleep: Dr. Myhill says that you MUST sleep if you are going to get further – ideally for 9 hours from 9.30 p.m. to 6.30 a.m. She explains how to achieve this on pages 42-46. For those having difficulty she does a starter pack for her patients (at £10) which consists of Nytol one a night (8 tablets), melatonin 3 mg (20 tablets), valerian complex (30 tablets). She also mentions various helpful drugs (pages 45-46).
(I did notice a big improvement in my condition when I got the right amount of quality sleep. I took amitriptyline for many years and now Natrasleep (hops and valerian from Boots) – Chris.) She says that when a normal sleep pattern has been restored you can reduce or stop the medication, but only if good-quality sleep can be maintained.
I know that some members of our group have great difficulty with sleep due to noise in their environment or great pain as part of their illness. It might be helpful for those in pain to get further advice from Dr. Myhill. There’s not a lot you can do about noise, other than wear ear-plugs or move and moving is one of the most tiring things that any of us will ever do.
B. Rest and Pacing: Dr. Myhill says that rest is the single most important factor in allowing people with M.E. to get better. Imagine a normal healthy person has £1000 worth of energy to spend a day; the M.E.-patient has only £100. What is more, this has to be spread throughout the day and there has to be £20 of change left at the end of the day. This will allow recovery to occur. Furthermore, you are only allowed to spend £3 in one session – then rest. If you start to get any symptoms, you are overdoing things. Somewhere in the book she says that we should aim at feeling well at rest, before we ever start to increase activity (pages 33-38).
C. Diet: Pages 47-53 explain the problems with our diet and why it causes fatigue. Fatigue can be caused by a high carbohydrate diet, food allergy, gut dysbiosis (wrong bugs in gut) and chemical overload. Dr. Myhill’s diet tries to address all four problems at the same time.
She says that carbohydrates tend to cause fatigue even in normal people. We should be eating protein and fat in the day and saving the carbohydrate until evening.
Food allergies cause fatigue and often also irritable bowel, mood swings and headache. The commonest offenders are wheat, rye, corn, dairy products, tea coffee, sugar, yeast, etc.
Gut dysbiosis, whereby foods are fermented rather than digested. (I can now understand why probiotics helped many people the Group years ago – Chris.)
Chemicals in the diet inhibit enzyme systems and slow up metabolism – this applies to drugs as well as food additives and pesticide residues. So avoid additives, colourings, flavourings, etc., also plastic wrapping (especially heated on food) and try to eat organic food if possible.
There’s a lot of very helpful information in these pages about hypoglycaemia, allergy, etc.
She then gives details of her diet on pages 54-58. It starts with a large high protein breakfast with no carbohydrates (no bread, no cereal), a high protein lunch, still no carbohydrates, but plenty of fruit, vegetables, nuts and seeds instead. For supper more protein, but you are now allowed some carbohydrate in the form of potato or rice. For snacks you can have nuts and seeds.
She says to expect to feel worse before you feel better and Kevin has found just that. (You do need the book for the full diet. I haven’t tried it yet, but I think I might – I like the high protein aspect of it, as this suits me well. I’m not sure if I can live without my bread at breakfast time – Chris.)
D. Vitamins ands Minerals: (pages 39-41) Dr. Myhill believes that we need nutritional supplements in order to get better. She gives the reasons for this on page 41. They are to do with loss of trace elements in the soil that we grow our food in, toxic chemicals in our food and that we need vitamins and minerals to help us remove them from our bodies, and over-processed food losing its vitamins and minerals.
Her recommendations for people with M.E. are:
Biocare multivitamin/mineral – one daily
Vitamin C 1000 mg – one capsule morning and evening
Biocare Microcell Essential Fatty Acid – one capsule morning and evening
Throughout the day drink Myhill’s Magic Minerals, which contain Calcium 60 mg, magnesium 7 0 mg, potassium 40 mg, zinc 6 mg, iron 3 mg, iodine 3 mg, manganese 2 mg, boron 2 mg, cobalt 1 mg, copper 0.2 mg, molybdenum 40 mcg, selenium 40 mcg, and chromium 40 mcg (see page 39).You also need sunshine and/or vitamin D (have just read that vitamin D can suppress the immune system - Chris) and seasalt (Celtic if possible – Chris) ¼ tsp daily. (If you did the special Celtic seasalt diet you would need a lot more and I feel you need to be a bit careful if you have high blood pressure – Chris.)
Dr. Myhill says that you must get these four aspects right before going on to anything else. Dr. Myhill summarises her diet as a low GI diet (the GI is a measure of the ability of foods to raise one blood sugar levels e.g. high GI foods are grains, root vegetables, alcohol, sugars, fruits, dried fruits, and fruit juice) and take probiotics.
Dr. Myhill says (page 70): In CFS there is a balancing act between energy levels and cell damage – most people get this wrong, overdo things and end up with tissue damage, which is a disease amplifying effect.
She goes on (page 70):
Once these “cornerstones” (pacing, micronutrients, sleep and diet) of recovery are in place, one should then introduce the other elements of the overall regime, i.e.
Dr. Myhill says that we must get the regime tight – that is the pacing, micronutrients, sleep and diet (page 71). You must feel well at rest for some weeks before you dare try increasing your level of activity. If you do too much too soon, you will simply trigger a biochemical and clinical collapse. Then gradually increase activity so long as there is no delayed fatigue.
The information continues for another 120 pages, going into a lot more details about tests and treatments. If you are very ill, or even moderately ill, and not making any progress, it would be good for you to get hold of this information for yourself, or carer, or doctor if he is willing to read it. There is a great deal of carefully worked out information here and I wish I’d had it about 20 years ago, because at that time there was almost no help available and I was doing many things wrong, especially doing too much most of the time.