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Osler's Web by Hillary Johnson

Discussion in 'General ME/CFS News' started by Francelle, Jul 10, 2011.

  1. Francelle

    Francelle Senior Member

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    Last week I started to read Osler's Web!

    What a remarkable - I want to say, anthology (collection of stories) presented, of the recent history since early 1980's of M.E./CFS. I'm not that far into it yet but I can barely put it down.

    I didn't realise that Peterson and Cheney were colleagues in Lake Tahoe for several years and were like the CFS detectives at that time. They certainly were passionate about their patients and this confoundingly mysterious condition. Also so many of the doctors names mentioned, are people who are still around in the CFS research field.

    In 1985: One VERY ???? prophetic (remains to be seen) reflection made on page 25 was about Peterson and Cheney's belief "........that Epstein-Barr virus reactivation might be merely an epiphenomenon or a hallmark of the syndrome. What if something else, some other virus - call it agent X - was undermining the immune systems of these patients, allowing rampant EBV replication and other subtle biological disturbances."

    I had a laugh about that!
     
  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    its a good book but i was very frustrated by it as nothing has been really done since, even the retrovirus found back then was said to be contamination. After reading it all you will realise history does repeat itself. Especially government coverups.

    Yes the whole ebv thing is just what is mentioned now ie they are reactivating because of some sort of immune defiency(nk??) or other underlying infection(retrovirus/xmrv) which is aids like in that it allows these common viruses to reactivate just like aids.

    Cheers!!!
     
  3. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I hope i dont wreck the ending but they didnt find the cause of the illness, lol.
     
    Ocean likes this.
  4. Francelle

    Francelle Senior Member

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    Hahahaha Heapsreal! Gosh that is such a shock - maybe I can't finish reading it now that the ending is spoilt!!!! :D

    It's unbelieveable really that it seems the solution is no closer in 2011. These guys had it so well labelled even then. I can only imagine how angry and betrayed Dan Peterson and Paul Cheney must have felt at the way their concerns were dealt with by the CDC.

    Will touch base on this book again I am sure before I have finished it. I have got six weeks to get through it, as it is an interlibrary loan but it is a hefty tome, so hope I can finish it in time!
     
  5. gregf

    gregf Senior Member

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    Osler's Web is a magnificent record. Hillary Johnson must be listed as one of the heroes of this saga.

    My copy is out on loan just now. Early in the book there is a quote by Cheney where he says
    something like, "it was causing neurological illness, causing cancer and was contagious. The
    only thing it could be is a retrovirus". This was 1985 or there abouts. His efforts were the start
    of the resistance, the start of the campaign we are all involved in now. That's heroic.
     
  6. ukxmrv

    ukxmrv Senior Member

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    It's such a good book. My own acute onset ME started around the same time and I managed to keep up with the news. It's strange in a way reading a history of something I actually lived through, knew some of the people and now it still continues.

    On each chapter heading I've written my (then) age on the top as a reminder.

    Lets hope that Hillary is well enough to write the next book.

    They should then be taught in schools to make sure it doesn't happen again.

    (Let's hope the ending is better this time - LOL thanks Heapsreal)
     
  7. gregf

    gregf Senior Member

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    That's been on my mind for some time.
    Its begging for a volume 2.
    Has any one asked her ?
     
  8. Megan

    Megan Senior Member

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    Hi guys,

    I'm reading it too. Good luck Francelle with 6 weeks! I've had it a few months now and am still finding it a challenge (could have done with a wee bit of editing if you ask me). It is interesting to read about the history of all the characters who are still part of the story.

    I am only about half way through, but the thing that has struck me is how bitterly divided the patient and scientific communities were from the very start. I don't know how it could have been any different, but seems to me this has damaged our cause greatly. Also not much mention yet of the history outside the US, perhaps that's in the second half?
     
  9. Grape Funk

    Grape Funk Senior Member

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    There is not too much from international viewpoints, although some from Australia, NZ i believe and Canada(plus maybe a couple others). It does not get into the dirty pigs and head honchos from England if that is what you are asking about.

    I was wondering myself if the 2nd edition of the book is any different from the first in terms of more material, pages, etc. I have the first edition from 1996-7 and the second one came out a couple years later. If anyone knows, thanks.
     
  10. justinreilly

    justinreilly Senior Member

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    Please write a review on Amazon!

    Grape Funk, I think it's exactly the same, just a reprint, but not sure.

    Yes, the UK Wessely school story really needs to be told in a narrative book! Prof. Hooper and Margaret Williams have been great about documenting it, but it is not in a narrative and is dry reading.

    I so hope that Hillary is writing Osler's Web II! I also really wish that she or someone could edit down Osler's Web so there's a 200 page version that more people would read. There was a rumor about a year ago that maybe she had gotten an advance for Osler's Web II but haven't heard anything since.

    OW is my favorite book of all time. Everyone who has read it please go to Amazon.com and write a review which will help sales and be a small thank you to Hillary. Then you can just copy your review to Amazon.co.uk, Googlebooks and barnesandnoble.com:

    http://www.amazon.com/Oslers-Web-La...8742/ref=sr_1_1?ie=UTF8&qid=1310721177&sr=8-1

    http://www.amazon.co.uk/Oslers-Web-...8742/ref=sr_1_1?ie=UTF8&qid=1310721229&sr=8-1

    http://books.google.com/books?id=Vq...ook_result&ct=result&resnum=2&ved=0CDIQ6AEwAQ

    http://www.barnesandnoble.com/w/osl...64628?ean=9780595348749&itm=1&usri=oslers+web
     
  11. taniaaust1

    taniaaust1 Senior Member

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    LMAO. Yeah so bad of you heapsreal, you really spoilt the ending.
     
  12. Francelle

    Francelle Senior Member

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    Yes Greg, time and again there is reference to causation being the unknown agent X, retroviruses or another unknown virus. These people were the true prophets of our time in regard to M.E.

    There are so many amazing quotes in this book but one I can lay my hand on right now from page 228 is when Cheney said " These people who are attempting to prove this is a psychiatric disease are just dinosaurs," he added. "They're like the people who tried to prove the world was flat. They'll write their peer reviewed papers, and one hundred years from now their graves will be desecrated."

    The heroes (and the prophets) of this condition many of whom are still fighting in 2011 for M.E. to be recognised, are unbelievable in my estimation. Much of their lives has been spent treating these patients, as well as, lobbying for acceptance and recognition of the condition despite incredible opposition and one could almost say, persecution.
     
  13. Francelle

    Francelle Senior Member

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    A funny thing happened to me the other dayI was at a hospital where my mother was admitted and I had my borrowed copy of Oslers Web in my bag. My brother saw the book and was curious. The long and the short of it was that he then told me that his daughter, my niece, developed M.E. (CFS) when she was 16. For the next half hour or so, the stories simply poured out of them. My sister-in-law told me that at one point a doctor virtually screamed at her that this was all in HER head.

    Obviously this had been a very traumatic time for their family and like many of us, who feel that because this condition is not validated, they didnt feel like they could tell us about what they were going through. Likewise they were surprised (I think) as the realisation dawned on them that this was the reason why I had been unwell for the past four years
     
  14. GaryK

    GaryK

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    Francelle , That is an amazing life story! It rams home just how much or how little the public knows how much this disease is spreading through out families. I would also like to say sorry about your niece. It's always sad to see children affected by this nasty disease and breaks your heart seeing this.
    Thanks for sharing :)

    GaryK
     
  15. ukxmrv

    ukxmrv Senior Member

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    Francelle,

    Really sorry to hear about your neice. Glad though it helped the family understand what you are going through.

    Something similar happened to me a few months ago. My mother has a large family and as I'm not well enough to travel some of them I don't see for a long time. I did visit my aunt (lives in the same country) a while back. My uncle by marriage rang me a few days later to tell me that he developed ME when he was about 40. He's still not well (both my husband and I commented after on how sick and frail he looked).

    I was gobsmacked. Why hadn't someone told me this a long time ago. Even my mother didn't know.
     
  16. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Love it

    Made me laugh out loud. Love it.

    Tina
     
  17. usedtobeperkytina

    usedtobeperkytina Senior Member

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    yes, those physicians, and now researchers, who took up our cause at great cost to themselves and their family are heroes. While it is understandable researchers are going to compete for grants and may disagree on some details, we patients need to show them all our appreciation. They aren't getting it from their peers, they aren't becoming millionaires, the only thing they have is the appreciation of the patients.

    And this is why it is soooo destructive for patients to go after some of these researchers. The last thing we need is to chase off researchers and physicians who believe it is biological.

    Tina
     
  18. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    As you can see my cfs is from severe depression and i have no sense of humor like most people with cfs, hehe he.
    It still suprises me how my warped sense of humor is intact even though neurologically my memory is up the creek in a barbed wire canoe. DO people with depression laugh, well i have made a few people laugh so now i can say your not depressed but have ME, now go and exercise by watching some tennis on tv.

    cheers!!!
     

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