Discussion in 'Fibromyalgia Main Forum' started by Patrick124, Jul 9, 2008.

  1. Patrick124

    Patrick124 New Member


    Has anyone come across this AWESOME new book? I discovered it on Amazon last week and bought it on a whim. I would love to talk about it with anyone who has read it.
  2. babyk902

    babyk902 New Member

    and really wanted to read it... is it worth the buy and do they tell you how each of them recovered?? it sounds inspiring
  3. Bluebottle

    Bluebottle New Member

    This is from the South Australia M.E./CFS Society's website:

    advising caution in following the book's advice:

    "Recovery from CFS – another view

    Tuesday 1 July 2008

    Recovery from CFS We’ve had a message from Society member Anne Kennedy expressing her concern about the contents of Alexandra Barton’s book, Recovery from CFS – 50 personal stories .

    Anne said in her message: “The book extols all sorts of weird and wonderful approaches to ME/CFS. I believe that it is essential that a responsible ME/CFS society should present the other side of the argument to the members/users of the website. John Greensmith has done a good job of presenting the other side of the argument in a letter he wrote on the topic.”

    Dr John Greensmith in his response points out the dangers of believing that CFS can be overcome by diet, willpower or determination.

    Here is Dr John Greensmith’s response:

    There is no doubt that improving your diet and being determined to recover from any illness is positive advice (PS Alexandra Barton, The Spark, Issue 53, May-Aug 200 but for people who have M.E. (Myalgic Encephalomyelitis) it is most often not sufficient to bring about a cure.

    Paradoxically, her advice may be very disappointing for M.E. sufferers because, when having tried everything that Alexandra suggests - and from which she got better - but it hasn't worked for them, they are left to conclude, either that they haven't followed it properly, or that they really are incurable, which may not, in reality, be the case because, first, they may not have the same illness that Alexandra (and the other cases in her book "Recovery from CFS - 50 Personal Stories") had and secondly, they may not be incurable if biomedical research shows us the cause of M.E. and leads us to a cure. Sadly, this proper scientific route is not being properly publicly funded.

    We need to be much more precise about diagnostic terminology. Although they are commonly taken to be equivalent, M.E. is neither synonymous with Chronic Fatigue Syndrome (CFS), nor is it an illness to be bundled with others under this catch-all umbrella term, which is so indiscriminate a label that there is not an illness to which it might not be applied. Whatever is the cause of the ubiquitous and omnipresent overwhelming lassitude from which people with M.E. suffer, it is not fatigue as we normally understand it. It does not come on, as tiredness usually does, after physical or mental exertion and it does not dissipate with any amount of sleep. In addition, M.E. sufferers have a range of symptoms (including muscle pain, swollen glands, cognitive dysfunction, slow recovery after minuscule effort and dizziness), which 'fatigue' alone does not cover. M.E. sufferers do not have chronic fatigue.

    People with illnesses, in which chronic fatigue may be a consequential symptom and from which they may recover in time, do not have M.E. They are not the same and should not be treated as such.

    Most people with M.E. are not depressed. Sure, they are, quite understandably, fed up with being unable to work, or go to school, with the decline in their standard of living on benefits, social isolation and fractured relationships, on top of the physically disabling symptoms of M.E. but this is not the same as clinical depression, which may occur for no such obvious reasons and these states, too, should not be treated in the same way. There is no evidence of any lasting benefit, without relapse, for people with M.E. from one of the recommended treatments, Cognitive Behaviour Therapy (CBT) and the other Graded Exercise Treatment (GET) actually makes more M.E. sufferers worse after it, some irrecoverably so. You can't talk your way out of M.E.

    Yes, M.E, sufferers should expect some benefit from improving their diet and adopting a positive attitude but they should not expect a cure, or be led to believe that other M.E. sufferers have been cured these ways.

    Yours sincerely
    Dr John H Greensmith
    ME Free For All. org"
  4. Slayadragon

    Slayadragon New Member

    I read this book quite a while ago and agree that it was quite diet-oriented.

    It seems to me that for most people with severe CFS (particularly when lyme is not the causative factor), diet is helpful in promoting health but not in any way a cure.

    Seeing what sorts of diets have been useful for some CFS patients was interesting though. They generally tend to be really different than the standard diet that is recommended by the government and mainstream health professionals.
  5. Lichu3

    Lichu3 New Member

    interesting and felt the compiler (Alex Barton) had a good heart but the topics discuss are not all that different from what is on here already. I also started to wonder if some were veiled advertisements for Mickel therapy, royal bee jelly, etc.
  6. msbsgblue

    msbsgblue Member

    I am bookmarking this to read later.
  7. Marta608

    Marta608 Member

    While we all want a cure for the type of fatigue or pain we're experiencing and while I'm all for a positive attitude and good diet, I couldn't agree more with Dr. Greensmith.

    I wrote a review about Martha E.Kilcoyne's book which also gives the impression that "anyone can do it if they try". I've been "trying" a very long time but am still stimied and ill in spite of a very good diet, little or no sugar and as little stress as living a narrow life affords me.

    People should know, however, that there are many conditions that have been given the CFS name by doctors who haven't looked further - or simply don't know what to do next. So, in some cases, diet, good supplements, etc. could actually mean a turnaround in their health. No one regimen fits everyone is the thing to remember if we decide to work toward finding our own cure.

    I also think Dr. Greensmith's comments are interesting about ME and CFS not being the same, and yet we propose combining their initials. Might we not be making things even more confusing by doing that? Why not admit that we have "generalized chronic fatigue syndrome" and really don't yet know the exact cause.

    [This Message was Edited on 07/10/2008]
  8. Patrick124

    Patrick124 New Member

    I disagree with the doctor because the author says specifically at the front of the book that none of the authors are advocating any cures at all. They are simply stories about how some people recovered. How can anyone criticise a book full of hopeful stories when we are all desperate to hear about people who have recovered?! Don't knock this book. It is the only book I have read which has left me feeling GREAT and HOPEFUL and the resources in that book are AWESOME. I even emailed one of the authors tonight to ask him more and he responded.
  9. Rafiki

    Rafiki New Member

    I hate to disagree with someone on their very first day as a member and with their very first, and only, post!

    Nevertheless, there are many people who are very ill with ME yet who are forced to contend with with ineffective, inappropriate and, sometimes, damaging therapies which only increase or prolong their suffering.

    I agree that those who suffer from chronic fatigue can certainly benefit from a good diet and a good attitude and may improve their level of fatigue. I also agree that people with ME can benefit from the above. Who wouldn't? I have yet to see any evidence that it is curative although I do not doubt that it could lay fertile ground for a remission if remission is possible for that particular patient. I remitted to 85% for several years albeit with my old bad diet :~)

    I know you are new to the board and I do hope I have not dampened your enthusiasm on your very first day.

    Peace to you,
  10. Marta608

    Marta608 Member

    Great and hopeful are good!

    I hope that one or more of the ideas in the book help you to recover. See, the thing is, we've almost all felt hopeful at least ten times. Yet there is no doubt, it could be that 11th time that's the ticket outta this mess!

    Keep us posted on your progress. I hope you don't take these apparent splashes of cold water as anything more than not wanting anyone's hopes to fall flat again.

  11. Chris82

    Chris82 New Member

    Im going to keep this short and sweet.I read only half hte book so far. THe MAJORITY of the people affected in this book are based in teh UK, europe , ireland etc. Not many american cases which i thought was odd..also if you read the individual stories, the people complaints aer all about fatigue but none of them mention many of hte other symptoms associated with the disease.And to me it seems like a big book of advertisement for these very "shady" treatments such as, healing from god, 'mickel therapy', reverse, thereapy, excersice ETC. In my opinion many of these sufferers did not have actual CFIDS.I will continue to read on...but so far nothin has stood out to me.Maybe I am being pessimistic, but i erally did read the book with an open mind. I guess im just very skeptical of these talk therapy approaches..Anyone else have the same feelings about the book?
  12. Honora88

    Honora88 Member

    Don't give up hope!
  13. Patrick124

    Patrick124 New Member

    I had hoped to find like-minded people in this forum but am disappointed by the response to the book - particularly by people who have not read it. I do not like to criticise a colleague (I am also a doctor) but Dr Greensmith had not even seen the book when he wrote his letter. A very well-respected doctor in the world of CFS admired the book enough to write the foreward and three doctors were happy to include their stories in the book.

    If you read the book you will see a common thread running through all the stories and that is the removal of stress. Whether it is physical or emotional stress, and by whatever means, the removal of stress allows the body to heal. This is as true for people who recover from CFS as those who recover from cancer.

    It is an excellent book and nowhere in the book does anyone advocate any 'cures'. It is simply 50 different people saying what helped them personally to recover. It seems that you are all criticising the book for advocating cures -which it absolutely does NOT do - otherwise it would be advocating 50 different cures!

    I do suggest that you read the book. It is a fabulous resource for anyone with CFS and the only positive book on CFS out there. I have recommended it to my medical colleagues, a couple of whom have already read it and have a high opinion of it. I regret to say that I will be leaving this forum as I have found the conversation very depressing. I wish you all the best for your own recoveries.
  14. Bluebottle

    Bluebottle New Member

    I am sorry you have joind the forum with the idea that we should all agree with you.I doubt you will find a forum anywhere like that.

    I have had severe myalgic encephalomyelitis for 21 years and am extremely sceptical as to whether people who claim to have recovered in the ways described in the book have the same serious neurological illness as me. I am just as entitled to my opinion as you are to yours that the book is 'awesome'.

    Here in the UK the diagnosis of CFS/ME is given all too readily for all sorts of different conditions, whilst the doctor struggling do develop a blood test for M.E.(Dr Kerr) is repeatedly & deliberately refused government funding.
  15. Rafiki

    Rafiki New Member

    It is probably unnecessary for me to invite you to stay as you, no doubt, have already reconsidered your hasty departure. In your training you must have developed the ability to objectively assess the opinions of a handful of people without succumbing to a lasting depression. We all have our moments here - I know I do - and everyone understands.

    Perhaps you are unaware of the situation in the UK where the "Life Coach" who wrote the book lives and practices. There is an organized psychiatric lobby obstructing the progress of world class research into the illness which has long been called Myalgic Encephalomyelitis.

    I suggest you check out the YouTube postings of Greg and Linda Crowhurst. I'm sure that you, like me, will find them both moving and enlightening. (I'm also sure that, as a doctor, you will appreciate the opportunity to observe Linda Crowhurst whose neurological symptoms are marked and obvious to even the untrained observer.) The Crowhursts are very eloquent on the disgraceful situation facing ME patients in the UK.

    Also, you might find the writings of the Buddhist Nun, Pema Chodron, educational for what they reveal about the limits of stress management in bringing about a recovery from ME. I'm sure you are aware that Buddhist practitioners have been the subject of much interest and scientific study due to their almost miraculous ability to alter and control the stress response. Pema Chodron has had ME for many years despite her extreme skill as a practitioner of meditation.

    I, myself, find my years of meditation incredibly helpful and this practice has improved many of my symptoms tremendously. However, I would not call it "recovery" which could so easily be misunderstood to mean "cure".

    Finally, I would suggest you examine the diagnostic criteria used to choose the subjects of this book. If the Oxford Criteria were used, the subjects most probably did not have M.E., or what many in NA call CFS, as one need only have: Severe disabling fatigue of at least a 6-month duration that affects both physical and mental functioning and is present for more than 50% of the time. That criteria is sufficiently vague as to be completely, and some believe deliberately, meaningless.

    Should you decide to contribute to the board, you would not be the only doctor doing so. I do hope you decide to share more of your experience with us than three posts recommending a book. You just may find that there are some lively and interesting people here who are not at all depressing.

    peace to you,

    [This Message was Edited on 07/11/2008]
  16. gapsych

    gapsych New Member

    Well said.

    Thanks for reposting the name of the Buddist nun. I had written it down in my small notebook in my purse where I put names of books, movies, etc. that people have reccomended.

    However the mischievious fibro fog fairies, the FFF squad, have once again lost something. My car/house keys I understand, but this time they have gone too far!!

    Take care.
  17. Rafiki

    Rafiki New Member

    FFF ~ LOL!

    Talking of books -- Pema's are incredibly helpful!

    Take care of Gap!
  18. ladybugmandy

    ladybugmandy Member

    i read some of this book as a download once. it was $15 i think. i wasn't too impressed so i didn't finish it. it didn't seem "scientific" enough.
  19. marti_zavala

    marti_zavala Member

    Well said as was bluebottle's response.

    Marta - yes, it does seem to muddy the waters to lump ME with CFS. I prefer ME but so many are uncomfortable with that and like one recent doctor who joined the board - didn't even know what it meant.

    I am not a fan of talk therapy. I have already changed my lifestyle to reduce stress - I have almost NO stress in my life. Period. It is a matter of life and death to me so I don't allow it in my life. Plus, now I am trying various ways of reducing my CNS overactivation.

    And I am still not well. But I am not without hope.

  20. gapsych

    gapsych New Member

    Yes I noticed that also, which made me a bit suspicious.

    Here I thought I was the only one!! LOL

    Rafiki, thanks for the second author who just happened to be on the same piece of paper!!!

    Take care.


    [This Message was Edited on 07/11/2008]