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New (Canadian) ME/CFS book - anyone read? Hope and Help for CFS and FMS

Discussion in 'General ME/CFS News' started by shrewsbury, Apr 10, 2010.

  1. shrewsbury

    shrewsbury member

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    Hope and Help for Chronic Fatigue Syndrome and Fibromyalgia
    * ISBN13: 9781581826708

    It has been said that chronic fatigue syndrome and fibromyalgia (CFS/FM) are like the old Indian story of the blind men and the elephant. As the men felt various parts of the elephant, they described it as a snake, a brush, a tree, or a wall, depending on which part they had touched. Each thought of the elephant in terms of his own experience, mistaking part of the elephant for all of it. Likewise, everybody working with chronic fatigue syndrome and fibromyalgia has a piece of the puzzle, but much work remains to be done before a complete picture emerges.

    Hope and Help for Chronic Fatigue Syndrome and Fibromyalgia is designed to educate patients suffering from CFS/FM about their illnesses and to teach them coping skills that will improve their quality of life. And while the good news is that people who suffer from CFS/FM arent dying, they bad news is that its going to take a lot of time and effort to get better since there is no one specific treatment that works for everyone.

    Some of the issues covered are:

    * Understanding the symptoms and how diagnoses are made
    * Causes of CFS/FM and common psychological consequences, including anxiety and depression
    * The role of stress and how to manage it
    * The connection between the mind and the body in coping with CFS/FM
    * The potential of medications, nutrition, and lifestyle changes
    * The role of complementary medications and dietary supplements in pain management
    * The value and limitations of alternative or complementary therapies such as acupuncture, massage, homeopathy, and aromatherapy
    * Legal issues about how to deal with medical and legal problems that may arise if insurance benefits have been stopped

    5 Responses to Hope and Help for Chronic Fatigue Syndrome and Fibromyalgia

    1. Marjorie van de Sande Says:
    April 10th, 2010 at 7:42 pm

    A MUST READ! In a personal, informal manner, the authors explain these complex illnesses in laymans language. They offer patients -

    HOPE through knowledge and understanding:

    * Learn about the exciting advances in research.

    * Understand how the mechanisms of multi-system abnormalities cause the array of seemingly unrelated symptoms and how diagnoses are made.

    * Learn about the potential benefits and limitations of various mainstream medical and complementary treatments.

    HELP through awareness and guidance:

    * Become aware of what you can do to help yourself.

    * Learn how to improve your quality of life through various life-style changes and Self-Help-Strategies such as pacing and energy conservation, sleep hygiene, pain management and nutritional/dietary support.

    * Learn mind-body techniques to lessen stress.

    * Become aware of how to deal with disability and associated legal issues.

    Authors are experts in their field:

    Dr. Alison Bested, a hematological pathologist, is a clinician and medical lecturer specializing in chronic fatigue syndrome, fibromyalgia and multiple chemical sensitivities. She was a member of the Expert Medical Consensus Panel, selected by Health Canada, which developed the Canadian Consensus Document for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. She played a key role in the implementation of a billing code and time-based billing for chronic fatigue syndrome and fibromyalgia by the Ontario Medical Association. Dr. Alan Logan is a graduate of the Canadian College of Naturopathic Medicine and Mind-Body Medicine at Harvard Medical School. He has published numerous papers and is the Nutrition Editor of the International Journal of Naturopathic Medicine. Mr. Russell Howe is a well-known attorney who specializes in medical disability cases.

    Hope and Help for Chronic Fatigue Syndrome and Fibromyalgia is a valuable and uplifting patients resource, which we are pleased to advertise on our website!

    Marjorie van de Sande, B Ed, Grad Dip Ed

    Consensus Coordinator for Canadian Consensus Documents for ME/CFS and FMS

    National ME/FM Action Network, Advisor & Webmaster

    Rating: 5 / 5

    2. Susan Cohoon Says:
    April 10th, 2010 at 10:06 pm

    Good overview of available treatment options for FMS and CFS. Since they often strike together, its nice to have information on both in one book. Buyer should remember that not all treatment modalities work for everyone. If read and shared with an open mind this book can be a good way to encourage those who havent found the right treatment/medication regimen yet to press on until they do.
    Rating: 4 / 5

    3. FM-CFS Canada Says:
    April 10th, 2010 at 10:35 pm

    Allow me to state bias, which is that of being employed with a national charity for FM & CFS in Canada. We link to the book from our site, fm-cfs.ca and know the value of the book its ability to help patients and practitioners get better results.

    You may not know, but the authors behind this book are truly leaders in the FM & CFS community. Dr. Bested has put years of on-going strategic effort into advancing the communitys cause, with success after success, and of course, working with others. Just to say, the authors are in a position to know a great deal, and have respect from the community.

    One success, Spring 2006: one of the authors plays a key role in the campaign to get new billing codes and higher compensation rates for physicians in Ontario. This is a first in Canada which will help all the other Provinces.

    Read their book, these are trustworthy authors, and learn what they know about dealing with FM & CFS.

    John Ernst

    fm-cfs.ca
    Rating: 5 / 5

    4. Jeannine Hebert Says:
    April 11th, 2010 at 1:30 am

    This book was the most helpful book I have read on Fibromyalgia. It was a book that was also recommended by my doctor.
    Rating: 5 / 5

    5. Jodi-Hummingbird Says:
    April 11th, 2010 at 3:36 am

    Many patients are told CFS is never fatal, and it is why we push ourselves so hard and end up so so ill. (It is a big part of why I am now housebound and bedbound, and ridiculously ill.) Some of us even die.

    Of course CFS isnt fatal, but M.E. is and many with M.E. are told incorrectly that what they have is CFS.

    CFS however isnt just a misdiagnosis for M.E. patients, its a misdiagnosis for everyone, always.

    Illnesses most often misdiagnosed as CFS include Lyme disease, vitamin deficiencies, cancer, MS, Bechets disease, thyroid and adrenal illnesses, FM and so on.

    Many of the illnesses misdiagnosed as CFS are testable and treatablebut only once patients and their doctors ditch the useless CFS misdiagnosis. Many illneses can also be very serious or fatal if not correctly diagnosed and treated, and this includes Myalgic Encephalomyelitis. (M.E. is NOT the same thing as CFS!)

    Please, if you have a CFS (mis)diagnosis, do everything you can to find your correct diagnosis, do not accept CFS ever as an end point to the process of diagnosis.

    Some of the diseases misdiagnosed as CFS ARE fatal despite what this book claims. All patients given this misdiagnosis need a corect diagnosis and treatment finally. The needless deaths need to stop!

    Jodi Bassett, HFME
    Rating: 2 / 5
     
  2. Gerwyn

    Gerwyn Guest

    It was Jodi's work that led to my diagnosis.A friend read it connected my symptoms to ME and arranged the consultation with a specialist who confirmed it.I have M.E. I dont see my symptom complex in Fukuda or Oxford.My symptoms fitted the CCD criterea exactly practically every concievable parameter
     
  3. shrewsbury

    shrewsbury member

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    Interesting Gerwyn

    Jodi, the 5th commentor, I believe, is with the Hummingbird Foundation, and I think they see ME as a disease distinct from CFS.

    Dr Bested, one of the authors, and Marjorie van Sande, the 1st commentor, were both involved with the CCD criteria, which sees ME and CFS as the same disease - Dr Bested as an author, and Marjorie as the Co-ordinator.
     
  4. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    NYC (& RI)
    I read the last edition a couple of times and highly recommend it. The focus on pacing, periodic resting and nutrition as fundamentals has helped me a lot.

    Not totally sure where Jodi is coming from. She's Australian and i think they use the BS Oxford definition of "CFS" there and of course Oxford "CFS" is just idiopathic chronic fatigue, not ME/CFIDS.
     
  5. Sing

    Sing Senior Member

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    New England
    Jodi lists her sources and recommendations for best expertise on ME. At the top of her list is Dr. Byron Hyde of Ottawa, whose website is www.nightingale.ca It is Dr. Hyde who makes these strong distinctions between CFS and ME, and who considers CFS to be an inadequate non-diagnosis.

    Sing
     
  6. pamb

    pamb Senior Member

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    Edmonton, AB, Canada
    hmmmmm. Winter or no winter, maybe it's time to go 'home' to Canada.

    My CFS/ME husband and I are Canadian and he first showed symptoms in 2001 when we lived there. By 2004 we still had no clue, despite asking at least 3 Canadian doctors if it might be CFS. Even in 2004, they kept getting FM and ME/CFS confused and as John did not have FM, said nope, can't be that. The only clue was the orthostatic intolerance so he had surgery at a nasty 'kink' at C4/5 in case that was blocking cerebral spinal fluid. Of course it did not help.

    In 2005 we moved to France, mostly because we've always wanted to live here to ride our bicycles (yup, total fanatics, the both of us) and because France has such great healthcare. At that time we figured John was definitely pretty sick, no clue why, but if he was going to keep getting sicker and die we may as well have our little bit of time in France together before he kicked the bucket. Alas, we did not know ME/CFS is not usually fatal! French health care have tried hard, but in the end ME is still psychosomatic in France. We have a kind doctor, who does believe John is very ill, but there is no way he will risk his license by prescribing any treatment he cannot justify for reasons other than ME/CFS.

    Looks like maybe we could get some pretty good health care, and goodness, maybe even some disability help, in Canada.

    I guess I can handle a bit more -30 if I have too! And we certainly did have a couple years of glorious riding together in France before John had to quit.

    Seriously, thanks for this information. This sounds like a very useful book overall. I do believe I'll order one.

    All the best,
    Pam and John
     
  7. Sing

    Sing Senior Member

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    New England
    Lucky you to have two countries! I'm an American and tried to find out if the situation is better in Canada for diagnosis and treatment. My overall impression is that it isn't generally better, but that there are individual good doctors, as well as some more informed thinking at the top--hence the Canadian Consensus Definition and the recent ban of donated blood from those with our illness. A number of Canadians on this site can fill you in more with the general picture.

    www.mefmaction.net is a source of information. They are based in Ottawa, along with Dr. Hyde. We had a thread in November commenting on two great video interviews in Sweden of Prof Meirleir and Dr. Hyde. That thread was called, "Video interview Prof. De Meirleir and Dr. Byron Hyde November 09", if you want to look it up.

    Keep us informed of how you are and what you find!

    Sing
     

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