A Beginner's Guide to ME/CFS
|Media type||print & digital|
Publisher's synopsis[edit | edit source]
(This synopsis was provided by the publisher for promotional purposes. For book reviews, please see Links section below.)
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') 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 criticized 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.
Links[edit | edit source]
- A Beginner's Guide to ME/CFS - Amazon (US)
- A Beginner's Guide to ME/CFS - Amazon (UK)
- A Beginner's Guide to ME/CFS - Goodreads
Learn more[edit | edit source]
- Oct 2012, Positive Health Online - A Beginner’s Guide to ME/CFS: Myalgic Encephalomyelitis, by So Many Names - Part I, Nancy Blake
- Mar 2013, Positive Health Online - A Beginner’s Guide to ME/CFS: Myalgic Encephalomyelitis, by So Many Names - Part II, Nancy Blake
References[edit | edit source]
somatic symptom disorder A psychiatric term to describe an alleged condition whereby a person's thoughts somehow cause physical symptoms. The actual existence of such a condition is highly controversial, due to a lack of scientific evidence. It is related to other psychiatric terms, such as "psychosomatic", "neurasthenia", and "hysteria". Older terms include "somatization", "somatoform disorder", and "conversion disorder". Such terms refer to a scientifically-unsupported theory that claims that a wide range of physical symptoms can be created by the human mind, a theory which has been criticized as "mind over matter" parapsychology, a pseudoscience. Although "Somatic Symptom Disorder" is the term used by DSM-5, the term "Bodily Distress Disorder" has been proposed for ICD-11. (Learn more: www.psychologytoday.com)
systemic exertion intolerance disease (SEID) - A term for ME/CFS that aims to avoid the stigma associated with the term "chronic fatigue syndrome", while emphasizing the defining characteristic of post-exertional malaise (PEM). SEID was defined as part of the diagnostic criteria put together by the Institute of Medicine (IOM) report of 10 February 2015.
graded exercise therapy (GET) - A gradual increase in exercise or activity, according to a pre-defined plan. Focuses on overcoming the patient's alleged unhelpful illness beliefs that exertion can exacerbate symptoms, rather than on reversing physical deconditioning. Considered controversial, and possibly harmful, in the treatment or management of ME. One of the treatment arms of the controversial PACE trial.