It Is Estimated That There Are Over , People Suffering From ME In Britain Today Although Not A New Disease, ME Also Known As Yuppie Flu Is At Last Being Recognised And Taken Seriously ME Is Short For MYALGIC ENCEPHALOMYSELITIS, A Term Which Relates To The Parts Of The Body Affected MYALGIC, The Muscles ENCEPHALO, The Brain And MYSELITIS, The NervesUntil Recently, Many People Suffering From ME Had Great Difficulty In Finding A Diagnosis And A Way Of Dealing Effectively With Their Chronic Fatigue This Comprehensive Guide Provides Much Needed Information About The Disease It Describes The Symptoms Of ME What Triggers It And Who Can Get It And Also Discusses Additional Problems Such As Sleep Disorders, Depression, Pain In The Joints And Difficulties With The Eyes, Ears And BalanceA Well Researched, Comprehensive Guide, LIVING WITH ME Is THE Book To Buy For Any ME Sufferer Who Wants Information Not Speculation This is one of the first books I got after becoming ill with M.E and it is partly responsible for my remaining ignorant of the basic facts of the disease for so long, and also played a role in the illness severely worsening over time.Shepherds book is an utter contradiction It has a small amount of solid information and research about ME in it, but it also strongly reinforces some of the most damaging stereotypes and myths about the illness put about by vested interest groups This combination makes it extremely dangerous the good information giving the bad information so much weight and authority as it does.Throughout this book, although a small amount of excellent information on the history of M.E is included, you get the feeling that what Shepherd is describing is not M.E., but a short lived post viral fatigue syndrome such as post glandular fever fatigue These types of symptoms are the only ones he really mentions fatigue, mild cognitive problems, aches and pains etc None of the symptoms or characteristics which separate M.E from these fatigue states is included NMH, POTS and other cardiac and cardiovascular effects, seizures, the profound cognitive effects none of these are mentioned For example, despite the fact M.E is known as and classified as a neurological illness, he talks about the transient neurological effects of the illness, he also claims that involvement of the heart is very unusual this despite the fact that many of the symptoms of M.E are known to be caused by cardiac and cardiovascular problems and that these are an essential and core part of the illness.Shepherd claims that vomiting should never be ascribed to M.E, and even bizarrely that nausea only affects a minority of patients The illness Shepherd describes seems to bear no relation at all to Ramsay s M.E.The information contained in this book is contradicted by many of the reputable M.E experts as well as large body of medical research This book is confusing and very misleading about many of the facts of the illness.There are barely even mentions of the moderately affected patient in this book, let alone the severely affected Shepherd claims to have had M.E himself but says he was only severely affected for two DAYS The potential severity of M.E and all the types of symptoms which can cause this severity are not even mentioned in this book.Shepherd also comments alarmingly and extremely ignorantly that being confined to the bed should not last any longer than a few days or at most a week and that any longer than this should be avoided and is not necessary Considering that 25% of M.E sufferers are severely affected and that many of these patients may be of absolute NECESSITY confined to bed for many months or even years at a time and will relapse extremely severely if forced to do otherwise these comments are not just ignorant but extremely dangerous They leave the most vulnerable patients open to the worst physical mistreatment, these comments actually invite such mistreatment in fact The physical and emotional damage that could be caused by doctors or parents or carers of very sick M.E patients who have read this book and who believe Shepherd when he says that no M.E patient needs to be bedbound as M.E is just not ever that severe for than a few days defies description This book glibly, arrogantly and unapologetically invites the very worst type of abuse upon extremely vulnerable severely affected M.E patients.Despite very clear and conclusive evidence to the contrary, Shepherd also completely denies that M.E can ever be fatal.Many have commented that he seems to be playing both sides not differentiating between fatigue and post viral fatigue sufferers and M.E sufferers, advocating against CBT and GET for M.E one minute and then supporting it in other ways the next, having links to Heathwatch along with Simon Wessely and much.As M.E advocate Kevin Short writes The MEA s Dr Shepherd has consistently undermined the WHO listing of Myalgic Encephalomyelitis and the protection this gives to patients , and repeatedly obstructed the proper separation of psychiatric fatigue patients from true M.E sufferers via full biomedical patient screening by the NHS See many of the papers by Professor Malcolm Hooper, Margaret Williams and Eileen Marshall for information on Charles Shepherd as well as the book Skewed by Martin J Walker which details Shepherds and Wessely s links to Healthwatch.Do NOT buy this book if you have M.E or an interest in M.E There is no useful information on treatments in this book, none of the core symptoms of M.E are even mentioned and nor is the potential severity of the illness and many of the most ignorant and harmful myths of M.E which cause M.E sufferers so much harm ARE included There are so many other better books out there, books better than this one in every single way.Despite the fact 25% of M.E sufferers are severely affected and may be unable to speak understand speech tolerate any noise or light feed themselves or eat solid food etc, Shepherd says glibly and ignorantly It should be possible for anyone with ME CFS not just to manage on their own, but still obtain real enjoyment out of life This may be true for post viral fatigue or other fatigue syndromes, but this is an ignorant and stupid comment when you are aware of how truly devastating and disabling true M.E can be This comment is an absolute slap in the face for severe M.E sufferers as well as those who have had family members and friends die of the illness.Clearly what is being discussed in this book is fatigue and CFS NOT M.E.What patients need to know is 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 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.For information on genuine M.E read books and articles by genuine M.E experts such as Dr Hyde and Dr Dowsett This book should be avoided by M.E patients and the CFS misdiagnosed non M.E patient alike None of us need the facts muddied even further, this only makes it harder for us all to start slowly getting well.Jodi Bassett, The Hummingbirds Foundation for M.E. A very thorough and interesting round up of all the research surrounding Chronic Fatigue Syndrome ME It was a little inaccessible in parts, but I found it helpful to have so much information in one place A great reference book and one I d encourage every ME sufferer to read.
Dr Charles Bernard Shepherd is chief medical advisor to the ME Association in the UK.
- 512 pages
- Living With M.E. - Chronic Post-Viral Fatigue Syndrome
- Charles Shepherd
- 06 April 2019 Charles Shepherd