Adolescence and Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome: Journeys with the Dragon [Englisch] [Gebundene Ausgabe]

"Examines the true-life experiences with four young women stricken with this chronic illness and offers advice and support for sufferers, their families and their friends. This book focuses on how these women cope with this stigmatizing chronic illness during adolescence and the impact it has on their lives. Here is a personal "Guide to Survival" for adolescent patients and parents, and a window into the psychosocial implications of this illness for those in the helping professions"

I wouldn't call this a survival guide, it doesn't really tell you how to cope, it just explains in the past tense how 4 young women coped with their individual situations. What is bizarre is that not only are there only 4 case studies, but all 4 are almost exactly the same!! They all share a similar mild-moderate illness level, an educated middle class background and were all diagnosed very early into their illnesses. (They could all also be described as `achievers' before they became ill which seems to be needlessly playing into the old ideas about type A personalities too).

There is absolutely no advice or extra information on how things might be for people not in any of these categories, which would be most people I would think in one way or another. It's extremely specific and anything but a balanced view. But for all that, it described extremely well the strength of mind that coping with ME (if it was M.E. thay had, this seems far from clear and even far from lkely in all cases) with so little help leaves you with and all the stages you have to go through to get there, as well as how one person in the family having ME changes the whole dynamic, so that made it worth reading for me.

I found this one pretty hard going.

It goes on and on about how "ME/CFS" has at least some sort of physiological element to it and that this needs to be given at least equal time with psychological theories(!). Nowadays we know that there is no chance at all that M.E. is a psychological illness and would say that ALL research needs to be into the organic causes of the illness, not just half! All the medical stuff in this book is completely outdated, really really terrible and best ignored altogether. It contradicts itself continually and is quite confused, it's just awful. It mixes M.E. and 'CFS' horribly.

Mentions of the severely affected in this book are zero. There is not one mention that these women got off lightly with regards to M.E. and that it can be a much more severe illness that just making you have to go part-time at Uni instead of full-time! This is almost certainly a book about 'CFS' and not M.E. at all.

What you really need to know is:

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M.E. patients were treated appropriately and correctly diagnosed until around 1988, when there was an increase in the number of M.E. patients and outbreaks in the US. Some medical insurance companies (and others) decided that they would prefer not to lose many millions of dollars on so many new claims and so they created a new vague fictional disease category called 'Chronic Fatigue Syndrome' to try to confuse the issue of M.E. and to hide M.E. in plain sight.

Under the cover of 'CFS' certain vested interest groups have assiduously attempted to obliterate recorded medical history of M.E.; even though the existing evidence has been published in prestigious peer-reviewed journals around the world and spans over 70 years.

M.E. is a distinct, scientifically verifiable and measurable, acute onset, organic neurological disease. 'CFS' in contrast, is not a distinct disease. 'CFS' doesn't exist. Every diagnosis of CFS - based on any of the CFS definitions - can only ever be a misdiagnosis. A watebasket diagnosis.

The fact that a person qualifies for a diagnosis of 'CFS' (a) does not mean that the patient has M.E., and (b) does not mean that the patient has any other distinct illness named CFS.' M.E. and 'CFS' are not the same.

Far fewer than 0.5% of the population has the distinct neurological disease known since 1956 as Myalgic Encephalomyelitis.

Chronic Fatigue Syndrome is an artificial construct created in the US in 1988 for the benefit of various political and financial vested interest groups. It is a mere diagnosis of exclusion based on the presence of gradual or acute onset fatigue lasting 6 months. If tests show serious abnormalities, a person no longer qualifies for the diagnosis, as 'CFS' is 'medically unexplained.' A diagnosis of 'CFS' does not mean that a person has any distinct disease (including M.E.). According to the latest CDC estimates, 2.54% of the population qualify for a 'CFS' (mis)diagnosis.

The patient population diagnosed with 'CFS' is made up of people with a vast array of unrelated illnesses, or with no detectable illness. However, while 'CFS' is not a genuine diagnosis, those given this misdiagnosis are in many cases significantly or even severely ill and disabled. 'CFS' is made up of people with cancer, MS, Lyme disease, depression and hundreds of other unrelated conditions.

Sub-grouping different types of 'CFS,' refining the bogus 'CFS' definitions further or renaming 'CFS' with some variation on the term M.E. (such as 'ME/CFS') would achieve nothing and only create yet more confusion and help to continue and further entrench the mistreatment and abuse.

The problem is not that 'CFS' patients are being mistreated as psychiatric patients; some of those patients misdiagnosed with CFS actually do have psychological illnesses. There is no such distinct disease/s as 'CFS' - that is the entire issue.

Due to outrageous political influences on medicine and govermnent policy, the vast majority of M.E. patients will not be able to be correctly diagnosed with M.E. Most M.E. patients will unfortunately be misdiagnosed with 'CFS.' It is extremely important to note, however, that only a very tiny percentage of those told they have 'CFS' will be M.E. patients. The overwhelming majority of those misdiagnosed with 'CFS' do NOT have M.E. 'CFS' is NOT just another term for M.E.

The name Myalgic Encephalomyelitis must be fully restored (to the exclusion of all others) and the World Health Organization classification of M.E. (as a distinct neurological disease) must be accepted and adhered to in all official documentations and government policy. M.E. patients must again be diagnosed with M.E. and treated appropriately for M.E. based on actual M.E. research. For this to happen, there is a real need for patients (and others) to participate in genuine advocacy and activism.

The bogus disease category of 'CFS' must be abandoned. All those misdiagnosed with 'CFS' must immediately reject this harmful misdiagnosis and begin the search to find their correct diagnosis whether this be M.E., PVFS, depression, cancer, or any other disease. Correct diagnosis is vital in obtaining the correct treatment.

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Quote: "I overwhelm a lot of people I think, because of my fearlessness. Like when you face being so miserable you want to die, when you face living with a chronic illness, when you face losing everything that's important to you, you just don't sweat the small stuff . . . So it's like the kind of courage and intensity that you aproach life [with] because of the strength you have to pull through. It's something that very few people can understand or relate to."

Jodi Bassett, HFME