A Beginner's Guide to ME/CFS

Authors: Nancy Blake, BA, CQSW, Leslie O. Simpson, Ph.D.

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The Beginner's Guide to ME has been written to counteract the bad advice given to people who have ME in the UK and elsewhere, and I believe it is essential reading for people who have this illness and for their carers and advocates. Our situation really is an emergency, and it is not getting better. If you have ME, you know that you are physically ill. You know that you can't do much because factors within your body are preventing it, not because you are 'paying undue attention to normal physical sensations'. Exercise is known to make your symptoms worse, yet you are offered (or coerced into) treatment by cognitive behaviour therapy (CBT) directed at changing your 'false illness belief' that you have a physical illness (you do) and graded exercise therapy (GET), directed at getting you to exert yourself more so that you can find out that you are 'only imagining' that exertion makes you worse. (It does.)

The influence of the psychiatric lobby has largely prevailed; we are told that CBT and GET are the only 'evidence-based' treatments that show promise, and these are the treatments offered by our 'specialist centres', If people are offered treatments based on a false idea that the illness is psychological, and being coerced into 'treatment' based on doing something that is known to make the illness worse, it is hardly surprising that people who have it are, by and large, getting worse, i.e.  'iatrogenic' - being made worse by medical treatment.

I have written my little book 'A Beginner's Guide to ME', and hope that the information and encouragement in it will offer some genuine help to people who have ME, and people who may be close to someone who has it (if you're helping, you are a star!). People with ME do need the information and encouragement in this first little book, and once you've read it, I think you may agree.

Ramsay's Disease - Myalgic Encephalomyelitis (ME) and the Unfortunate Creation of 'CFS'.

Authors: Leslie O. Simpson, Ph.D., Nancy Blake, BA, CQSW

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Dr. Simpson is a researcher who has devoted more than thirty years to the study of haemorheology - the physical properties of blood. It is a medical given that red blood cells are biconcave discocytes - perfectly round and flat, with a dimple on both sides. This shape enables them to 'deform' (curl up) enough to travel through tiny blood vessels (capillaries) much narrower. The role of the red blood cells is to carry oxygen to every cell in our body, and remove waste products. If this process fails, symptoms will occur in the areas of the body most sensitive to oxygen deprivation - the muscles, cognitive areas of the brain, and the endocrine system which regulates most of our bodily functions. People who have ME/CFS will recognize the failure of normal functioning in muscles, problems of cognition (''brain fog'') and in regulation of body temperature, appetite, sleep rhythms. Dr. Simpson's studies, involving micrographs of immediately fixed samples of blood show that in ME/CFS, the red blood cell population becomes dominated by a proportions of cells which have shapes other than biconcave discocyte, are therefore stiffened, and unable to traverse the microcirculation. This account does not explain the initial cause or causes of this debilitating illness, but it does explain how the symptoms are created.

There are a number of easily obtainable supplements which can improve the flexibility of the red blood cells if taken in sufficient dosage. These include fish oil, 6g per day, genuine Evening Primrose Oil, 4 g per day (following research that appeared to show that EPO was not effective, it was discovered that many products marketed as EPO are not, in fact, genuine), Vitamin B12 as hydroxocobalamin, and pentoxyfilline. Dr. Simpson is clear that for reasons unknown, not everyone will respond to one or another of these, and suggests trying them until you find the one that helps you the most. He has interviewed, researched and advised members of ME and CFS groups in the U.S, U.K., Canada, Australia, and his native New Zealand, and had hundreds of reports from people who had been helped by these recommendations. His ideas, along with much research in the field of haemorheology, is ignored by the medical profession and the medical textbooks, so that sufferers from a number of other chronic, illnesses, as well as ME, are deprived of information which could make a major difference to their well-being.

Nancy Blake is a Neurolinguistic psychotherapist who became very ill with ME in 1986. Now virtually fully recovered, she puts forward a strong case against the psychiatric labelling of ME/CFS, and makes recommendations, based on the physiological nature of this illness, for people who have it, for doctors, and for public policy.

 nblakemecfs@hotmail.com