A Beginners's Guide to ME/CFS

*/'I would give anything to have had this advice when I was first ill.'/*(Quote from the first review of 'A Beginner's Guide to ME/CFS')

Now confirmed by the prestigious US Institute of Medicine, ME/CFS is a serious, debilitating illness, not 'all in your head', not 'somatoform' (the psychiatrists' term for 'all in your head'), not 'functional'(the neurologists' term for 'all in your head').

The IOM Report ('Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - Redefining an Illness', February,2015,*iom*.edu/Reports/2015/*ME-CFS*.aspx) states that this illness

1) is not psychiatric

2) is a disease

3) in which 'exertion of any kind, physical, cognitive or emotional*, can adversely affect many organ systems in the body'.*

The name they suggest, 'Systemic Exertion Intolerance Disease' (SEID) is intended to reflect the serious nature of the illness, which can, in its most severe form, cause the patient to become wheelchair or bedbound, suffering a multitude of symptoms, including intractable pain, for months or years.The phrase 'exertion intolerance' has the medical meaning, as stated above...exertion can cause wide-ranging physical harm.

Cognitive Behaviour Therapy (CBT) and Graded Exercise Therapy (GET)have been recommended as treatments, by psychiatrists, on the grounds that thinking we have a medical disease is a 'false belief', and that the idea that exercise will make us worse is also a 'false belief'.Now it seems that it's the psychiatrists who have the false beliefs.

No one is criticised for avoiding what makes them ill - if you have a nut allergy, you avoid nuts.If you have diabetes, you avoid sugar.We are bombarded with advice about avoiding things that cause cancer.Now we know that if we have ME/CFS, we absolutely must avoid exertion. Ramsay's insistence on  rest as the first, most urgent treatment recommendation, is now seen to be justified. No longer radical, the advice in 'A Beginner's Guide to ME/CFS' offers encouragement, practical suggestions, and much praise for carers,whose help is essential to keep you on the path towards improvement.