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Josie eyes Hawaiian treatment in bid for better life

Discussion in 'General ME/CFS Discussion' started by Ember, Jun 20, 2012.

  1. Ember

    Ember Senior Member

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    taniaaust1 likes this.
  2. Desdinova

    Desdinova Senior Member

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    Looks more like an informed journalist.
     
  3. stefny

    stefny

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    Does anyone know what/where the treatment in Hawaii is and/or what it consists of?
     
  4. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I believe the treatment is with Dr. Jamie Deckhoff-Jones. You can read her blog here: http://www.x-rx.net/blog/
     
    justy likes this.
  5. stefny

    stefny

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    Thanks Sushi!
     
  6. SickOfSickness

    SickOfSickness Senior Member

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    Apparently over £20,000 was raised by a small organization that started to help Andrew. Who Dr. Jamie saw and wrote about in her blog. Good that some lucky young people will get to see her and get helped.
     
  7. taniaaust1

    taniaaust1 Senior Member

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    Yeah a well informed reporter. The distinguish between ME and CFS isnt good in australia with some of our CFS specialists, hardly knowing a thing about ME.
     
  8. anniekim

    anniekim Senior Member

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    This press release was issued yesterday about Andrew's treatment with Dr D-Jones, it's all very bizarre. Andrew's mum is saying he is seeing other docs now in Hawaii and improving further. Confused how the mum managed to find other docs in Hawaii who know about M.E. As someone else said, the M.E community does not need more drama..... Find it all very sad and confusing.

    'PRESS RELEASE Issued for and on behalf of Little Acorns [‘LA’]
    Concerning The relationship between LA and Jacqueline McMurdie
    Date: 6 July 2012

    It is with great sadness that LA informs you of the cessation of the support relationship between LA and Jacquleine McMurdie, mother to Andrew. This decision has most certainly not been taken lightly as will be described later, and in detail, in this Release. LA wants to assure its supporters that it is not abandoning Andrew in a foreign land and to this end LA has funded the purchase of return tickets for the flights home both for Andrew and Jacqueline.

    A total breakdown in trust between LA and Jacqueline McMurdie occurred several days ago on 29th June 2012.

    The rest of the text of this Release is a narrative of the events that have forced LA to take the very sad decision to cease relationships with Jacqueline McMuride. As will be seen, and at all times, LA took all possible steps in order to avoid this situation from arising. This is a narrative only and LA has paid due attention to the legal aspects in laying out these details. Where detail has been omitted, this has been done either as a result of direct legal advice or as a means of protecting the justified privacy of the parties involved.

    On first arriving in Hawaii both Andrew and Jacqueline were very happy with Dr Deckoff-Jones. Jacqueline spoke of this happiness on several occasions right up until 29th June and this is well documented. However, at times, Jacqueline was homesick and there were home circumstances which exacerbated this feeling and resulted in her feeling under extra pressure. It is fair to say that Jacqueline suffered with volatile episodes. LA adopted a supportive role during these episodes and with great diplomacy these issues were, up until 29th June, always resolved and absolute focus on Andrew’s treatment was always re-established.

    All this time Andrew was doing extremely well with his treatment and this is the primary reason why LA has fought so hard to allow it to continue. LA’s primary concern is the facilitating of access to new treatment possibilities for young people like Andrew. ME is devastating for young people, more so perhaps than for those who have already gone through the ‘developing years’. This is because the severe restrictions that ME places on some young people’s lives take away opportunities and experiences that in some cases may never be repeated. Andrew was doing so very well that within days of his arrival he had reached a stage which Dr Deckoff Jones had hoped to achieve within two months. LA, at this time, were very excited by the future possibilities for further improvements in Andrew’s condition.

    Prior to this, Jacqueline had already threatened to go home due to a misunderstanding within the ME Community. This situation had been dealt with by
    LA and Andrew’s treatment had therefore continued at that time.

    However,because of a discussion in the early hours of Friday morning (29th June), between Dr Deckoff-Jones and Jacqueline, Jacqueline made the decision to fire Dr Deckoff-Jones. This event was witnessed by members of the LA team. Jacqueline then decided to make plans to fly home immediately against all our advice that this was not a wise decision for Andrew.

    Every effort was made by LA to calm and diffuse the situation.

    Over the past few days and after considerable effort from LA there seemed to be some possibility that treatment for Andrew could continue and offers were certainly made by Dr Deckoff-Jones.However, despite these best efforts, Jacqueline remained opposed to the resumption of Dr Deckoff-Jones’ treatment protocol.

    At this point, all chances of resolving the situation now seemed impossible, with the combined background of Jacqueline’s volatile episodes and her first sacking of, and then stated opposition to the continuation of the treatment with, Dr Deckoff-Jones being the main factors in this conclusion.

    However, LA attempted once more to resolve the situation.

    During the next 72 hours there were almost constant attempts to negotiate and rebuild the relationship but it is a matter of fact that Jacqueline threatened police action claiming she felt unsafe.

    The situation further deteriorated when Jacqueline informed LA that she was leaving the safe and comfortable apartment on the island to go to the airport where she and Andrew would sit until she could book flights home. This was incredibly worrying for all of us at LA and Jacqueline was advised that this was not in Andrew's best interests.

    LA was left in an extremely worrying position, afraid for the safety and well being of both Jacqueline and Andrew. Dr Deckoff Jones was also concerned regarding welfare issues even though Andrew was no longer her patient and indeed communicated those concerns direct to LA

    LA did manage however to locate Jacqueline and Andrew and it was determined that they were safe and that Andrew had been given his medication for the day. This was a great relief to all at LA.

    All this time efforts were being made to see if the planned return travel tickets could be brought forward. LA was not helped in this because unfortunately Jacqueline ceased communicating at this time. Jacqueline then informed LA that tickets had been booked and paid for by someone else. LA has subsequently reimbursed this third party fulfilling its obligations.

    As things stand now, LA is being led to believe that Andrew is being seen by other doctors in Hawaii and being home treated. Beyond that LA has no further knowledge of the current situation due to a complete lack of communication by Jacqueline.

    We remain grateful for the dramatic improvement in Andrew's health that was well documented in the updates and photos posted prior to the difficulties outlined above. It is our sincere hope that Andrew can continue on the path set for him by Dr. Deckoff-Jones.

    LA remains committed to helping young people with ME by facilitating access to new treatment protocols."

    Addendum: the return flight tickets funded by LA are set for 12 July 2012'
     
    BEG likes this.
  9. Valentijn

    Valentijn Activity Level: 3

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    Very odd, especially since half of the story is missing. Little Acorns is also being very melodramatic with the stuff about worrying about them being safe and Andrew taking his medication. He's a kid with ME in Hawaii with his mother, not an untreated type 1 diabetic by himself in a war zone.
     
    Ocean likes this.
  10. justy

    justy Senior Member

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    How sad for Andrew that his treatment couldn't continue - BUT we don't know the facts and neither can we speculate. Jaqueline is Andrews mother and i am sure she has his best interests in mind. I do wish all parties involved well - and i hope that Little Acorns continues to raise money and fund treatment for children with M.E.
    Justy.
     
  11. Ember

    Ember Senior Member

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    "Turning Point for Josie“

    http://tpfj.weebly.com/index.html

    A donation request for treatment with Dr Jamie Deckhoff-Jones:
     
  12. Firestormm

    Firestormm Guest

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  13. slayadragon

    slayadragon Senior Member

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    Jamie Deckoff-Jones appears to be deleting all comments related to Mrs. McMurdie's statement from her blog. I thus am posting the ones of which I become aware on my Facebook page.

    https://www.facebook.com/lisa.petrison/posts/345942735488798?ref=notif&notif_t=share_comment

    (Of course, if any of the authors changed their minds and deleted their own comments, they should let me know and I will delete them immediately from my page as well.)

    For those interested, JDJ's most recent post on this topic is here.

    http://www.x-rx.net/blog/2012/08/the-elephant-in-the-room.html

    Her comment with regard to Mrs. McMurdie's statement is below.

    Best, Lisa Petrison

    *

    Jamie on August 2, 2012 at 2:20 pm said:
    For the first time since I started this blog, I have decided to take down a couple of comments and block someone who is threatening me. Bizarrely, this person has apparently befriended Andrew’s mother and I hear they are intent on libeling me and the members of Little Acorns. I have only commented on this case (since the blog encouraged by the mother) to the extent that I had to in order to ensure that correct medical information has gone out from here and that no one has been misled.
    I have decided not to give it a forum, not because I am concerned about their lies in any way, but because they seek to stop me from sharing my medical ideas. Everything I did is well documented and I am ashamed of nothing other than my mistake in not prescreening properly. Anything that was out of the ordinary with this case was done to spare Andrew’s energy or accommodate my own illness and it was all perfectly legal. The medicine was impeccable. Andrew was improving by the mother’s own report when she inexplicably removed him from treatment. That a complete stranger would spend this kind of energy on it because of an ideological vendetta against me is bizarre and twisted.
    It is the nature of the internet to have to deal with situations such as this. Although it goes against the grain, I’m not going to allow it to play out here and distract everybody. We have bigger fish to fry, such as the papers I just posted. We need to be thinking about why we are sick and what we can do about it now, not in ten years. I will not be threatened into not offering my knowledge here for free and I will not let the message be subverted. I can only help a few in practice. It is not easy to be in practice and be as public as I am, but writing publicly may be the most important thing I am doing. The ideas are what matter, not my personality or who does or doesn’t like me.

    This blog is an open house, but it is my living room and I’ve decided to show the toxic elements the door.
     
  14. merylg

    merylg Senior Member

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    Firestormm Thanks for posting this Firestormm...I am quite shocked at what I am reading...still haven't got to the end of it yet.
     
    Firestormm likes this.
  15. Firestormm

    Firestormm Guest

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    I'm afraid it only gets worse.
     
  16. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Advocate and merylg like this.
  17. slayadragon

    slayadragon Senior Member

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  18. slayadragon

    slayadragon Senior Member

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  19. Jayred

    Jayred

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    Hello all, I am the mum of Josie and we are going to see Dr Jamie at the end of Sept, through Oct. I have absolutely no qualms at all about this. Jamie has been open and upfront with us from the beginning. We know she is ill and not a very conservative/conventional doctor. She offers herself freely on her blog and has helped many people, including Katy (Val's daughter - who has written of their experience with Jamie on Jamie's blog). You only have to read the very many comments on her blog that are expressions of gratitude, to know Jamie helps people (regardless of whether or not negative comments are taken down - that doesn't mean the positive comments are not true). I would ask everyone not be believe everything that has been written in the interview - yes, some truth, but taken out of context and skewed by people who are vindictive and nasty. I have had some direct dealings, and I know who I would trust ... The people who are writing all the negative and abusive stuff are witch hunting as far as I am concerned, and the person they are attacking seeks to help others. So ... who is supporting the ME community and who is not?
     
    taniaaust1, Advocate and merylg like this.
  20. Jayred

    Jayred

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    Oh, by the way, the newspaper article was taken from an article written in MindFood magazine (June issue) about ME and also about Josie. It was written by my niece, Rachel Eldred, who is continuing to research and support the ME community. I think you can google for that article - think she did a really good job. :)
     
    Ember, Advocate and merylg like this.

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