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New Blog: Hope for Andrew

Discussion in 'General ME/CFS News' started by slayadragon, Aug 3, 2012.

  1. slayadragon

    slayadragon Senior Member

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    Jacqueline McMurdie has started a new blog, "Hope for Andrew," to allow public discussion, comments and questions related to her family's relationship with Jamie Deckoff-Jones and Little Acorns.

    http://hopeforandrew.wordpress.com/2012/08/03/going-public/

    Her summary statement is below.

    Best, Lisa

    *

    In June 2012, my 11-year-old son Andrew (a sufferer of severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) and I traveled from our home in Northern Ireland to Hawaii, so that he could be treated by Dr. Jamie Deckoff-Jones, M.D. I had been informed that she had experience treating children with this disease and that she could help my son.
    Money for the trip and the treatment costs was obtained through a fundraising campaign, done as a joint effort through members of our community and an organization called Little Acorns. A total of 22,806 pounds was raised, with 19,506 pounds of this from our local community. The plan was that we would remain in Hawaii for two months.
    Andrew was treated by Dr. Deckoff-Jones for a total of two weeks. At that point, I disagreed with the doctor’s suggested treatment plan due to fears for Andrew’s safety. Dr. Deckoff-Jones’ response was to discontinue all treatment and to instruct us to return home to Northern Ireland, and so we did that.
    Subsequent to the discontinuation of Andrew’s treatment, Dr. Deckoff-Jones and Little Acorns each issued multiple public statements concerning this matter. These statements have been inaccurate, hurtful to Andrew and the other members of our family, and derogatory toward me.
    I thus am issuing this public statement to let the public know in detail what happened, both to tell my side of the story and to provide full information to those considering treatment by Dr. Deckoff-Jones in the future.
    Please click on the link below to read my statement. If anyone has a problem downloading this and would like me to send you a copy via email or pm, please let me know.
    http://www.mediafire.com/view/?7jaub8mvd18f0iu
    Sincerely,
    Jacqueline McGorrian McMurdie
     
  2. Valentijn

    Valentijn Senior Member

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    I'm only half way through (it's 108 pages), but it's a fascinating read. Little Acorn is looking a little nuts, and the doctor is sounding very unprofessional.

    Nothing the mother has said so far sounds dubious, unlike the "OMG he's alone with his mother in HAWAII" statement the other side issued earlier. The mother is also providing plenty of names of disinterested 3rd parties that are in a position to confirm or deny her version of events.
     
  3. slayadragon

    slayadragon Senior Member

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    Here is an update from the police in Northern Ireland.

    *

    From: Lorna Dobson, Media Relations, Northern Ireland Police.
    RE: Jacqueline McGorrian McMurdie
    Date: August 6, 2012


    I have spoken with D/S Cologhan about this matter and our response is below…

    ”We cannot comment on named individuals however I can confirm that this matter was brought to the attention of local police who have investigated and detected no evidence of fraud.”

    I hope this helps,

    Lorna
     
  4. slayadragon

    slayadragon Senior Member

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    Valentijn likes this.
  5. GoWest

    GoWest

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    Hi Lisa, I just read your interview with Jacqueline. You did an amazing job! I hope the family will get to take Andrew to Dr. Myhill for further treatment. I think her approach may be similar to Dr. Deckoff-Jones, especially in terms of using Deplin or a similar folate supplement.

    I want to encourage you, Jacqueline. I am a teacher and taught 11 year olds for many years, so I can relate to someone Andrew's age. I know we adults hate when kids play their video games all day and all night ignoring us. And I tend to tell them they must put them down and chat with us adults, especially when it is my grandson. Ha!

    But a child sick with ME will not be able to focus on one fun thing for several hours. I find it astounding that the biofeedback enabled his brain to finally focus on something he liked. (I have to admit that I have played Angry Birds for a long time, and husband will do crossword puzzles forever on a plane flight.) So something helped Andrew while Dr. Deckoff-Jones was treating him. Whether it was biofeedback or something else, the fact that he was able to focus for hours on a video game is HUGE PROGRESS. Please celebrate!!!! Kids who are sick can never focus like that. That may well be why he never did this before in his life.

    I have done biofeedback here in Las Vegas. It was costly and it did not help me. But sometimes you have to spend some money and try things. I also bought a oxygen concentrator with my own cash. I don't qualify for it to get insurance to cover. I know Dr. Deckoff-Jones is working with this for her patients. I must say it has helped me immensely. I am a writer and when I use the oxygen for about a half hour, then my brain is much clearer, so that I can spend the afternoon (my worst time of day) writing and editing - very hard brain work.

    Please, Lisa, Jacqueline, all with ME/CFS for years - can we all support each other, keep looking for treatments, causes and cures? Erik Johnson and I both know mold is a huge issue. I was a patient of Dr. Shoemaker, and we are acquaintances with respect for each other. We both know mold is not the only issue. Let's all hang together, be kind, objective, view both sides and the truth on both sides when we disagree.

    There's a 2,000 year old story about 4 church workers who disagreed on something. So they split up and kept on working, only with a different person on each team. They still respected each other, but they all got a whole lot more done by being supportive and continuing to work for the same cause. We can do that! We can do that without destroying folks who just want to care for us.

    Paula Carnes - patient advocate since 1997, writer, disabled teacher, severe health issues with ME, Lyme, mold sensitivity
    favorite quote: "When you find yourself in hell, keep walking." Winston Churchill
     
    leela likes this.
  6. slayadragon

    slayadragon Senior Member

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    Hi Paula,

    I think that people are under a bit of a misunderstanding that I am more involved in the dispute between Jamie Deckoff-Jones/Little Acorns and the McMurdies than I actually am. The McMurdies are making their own decisions about how they want to handle things. I'm just helping them to communicate their experiences and thoughts and decisions, as they convey them to me.

    So when I have made public comments about this situation, I am not speaking for the McMurdies. I am speaking only for myself, as an onlooker.

    As an onlooker, the reason that I decided to help the McMurdies to tell their story to this community and to other audiences is because I believed that they had been treated extraordinarily badly by both JDJ and LA, as outlined in Jacqueline's statement. My hope was that once the statement was made public, JDJ and LA would reconsider their approach and begin behaving professionally and kindly to the McMurdies. Unfortunately, this has not occurred.

    Jacqueline McMurdie has stated clearly on her blog what her family wants from JDJ and LA. All five points that she lists are wholly reasonable requests. Unfortunately, JDJ and LA do not seem to be willing to even acknowledge receipt of these requests. The "Statement of Income and Expenditure" issued by LA in no way counts as a "real public accounting of the money of Little Acorns," and the McMurdies' other four points have been entirely ignored.

    It is unfair for anyone to expect the McMurdies to turn the other cheek after how they have been treated. Insofar as supporters of JDJ and of the members of LA want to involve themselves in this matter, I would suggest that perhaps the best idea would be for them to encourage JDJ and the LA members to take a look at the McMurdie family's requests and seriously consider fulfilling them.

    http://hopeforandrew.wordpress.com/2012/08/14/our-familys-requests/

    Cordially,

    Lisa Petrison, Ph.D.
     
    Adamskitutu likes this.
  7. GoWest

    GoWest

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    Hi Lisa,
    Does Jacqueline read this forum? My one point for which I am expert is the reality that a child able to focus for several hours - for the first time in his life - on a video game is showing vast improvement. Something Dr. D-J did helped.

    I can only add that we have all spent tons of money on treatments. Some helped, some did not, but we signed on to pay the bill when we went to see the doctor. I will be interested to see if Jacqueline is able to take her son to see Dr. Myhill and to see if Myhill will be willing to treat this family.
     
  8. taniaaust1

    taniaaust1 Senior Member

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    Its hard to say if it was the biofeedback which Dr. Deckoff-Jones got him to do which helped or not. All that is clear is something quite dramatically did.. maybe his home has a lot of mold and it was just getting away from that which helped a lot? (if so.. he'll end up crashing again back to previous state once he's home).

    Its sad that Jacqueline couldnt trust the doctor she'd gone to take him to see.. if her knowledge of that folate and saline IVs beign used to help ME people was better.. maybe she wouldnt have been so freaked out over what Dr Deckoff Jones proposed. These things were probably far safer then many other ME/CFS treatments.
    It must of been horrid for someone to fly all that way to see her (paid by others).. only then to not want to take on board the treatments she was offering. How does a doctor treat someone well if they dont trust them and refuse to accept their treatments? Dr Deckof Jones was put into a real diplema (I havent even read Dr Deckof Jones statement to come to that conclusion but rather Jacquelines statment has me coiming to thinking that).

    Its also sad that Dr Deckof Jones was so sick.. too sick to be dealing with Andrew and his mum well, too sick to be able to be a good doctor. I hope both sides look deep at the part they played and look at where they went wrong and why this whole thing blew up.

    What went down with the Little Acorn group member harrassing sounds crazy.... its shocking Jacqueline was reported as endangering her child. No wonder she freaked out over the whole thing and felt a need to escape and go back home. Putting pressure like that onto someone certainly dont make them trust you. Lack of understanding on both sides lead this this drama... I hope both sides come to understand that and let this whole thing go. Thou being threatened about having son taken away is truely shocking and shouldnt have occurred.

    The Little Acorn group really should kick out that member(s) who harrassed Jacqueline so much. They should of kept trying to reassure.. without threats.
     
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  9. Firestormm

    Firestormm

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    I saw yesterday that LA finally published some accounts: http://www.little-acorns.me.uk/little-acorns-statement-of-income-and-expenditure.html

    Jacqueline appears to be contesting them:

    Dear Barbara,
    My legal adviser informs me that this is not a proper accounting statement.
    In addition, a number of the items listed are perplexing to me. Some are for things that I don’t recognize at all and others are for amounts inconsistent with my own records.
    Would you please send me copies of all the receipts that you used to compile this?

    http://hopeforandrew.wordpress.com/2012/08/03/going-public/
     
  10. maryb

    maryb iherb code TAK122

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    Is it me? Why dwell on negatives, this illness brings enough of its own. A child has been helped somewhat which is good, personality clash with a doctor, we've all had that, treatment we don't agree with too. In my view you put experiences like this behind you, put it down to experience and move on, re-hashing, inviting opinions and views from strangers on the situation and what's happened??? Are they really necessary? Keeps you stuck in the negativitiy of it all, not good for anyone never mind children.
    A positive approach to the future, decide which way to go now, start the planning and putting in place of how to achieve the aim. Let the negative stuff go, draw a line under it. Maybe too simplistic for some but thats where my energy level is.
     
  11. slayadragon

    slayadragon Senior Member

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    Jamie Deckoff-Jones ceased being Andrew McMurdie's physician on June 29. Jacqueline said nothing publicly about this case (except to make a few comments on Facebook regarding the JDJ and LA statements about it) until August 2.

    During the intervening 1+ month, JDJ wrote about the case in three different blog entries. Little Acorns issued three different statements. In addition, on July 6, JDJ (against Jacqueline's express wishes) appeared in a newspaper story in Jacqueline's hometown paper describing Andrew's condition under her care and "slamming" the National Health Service for not appropriately diagnosing or treating him. (Jacqueline was concerned about this because she feared that her local practitioners would give Andrew worse treatment in the future as a result.)

    Following is the list of things that the McMurdies want from JDJ and LA. Two of these have to do with getting a proper accounting of the money that the McMurdies' community raised for Andrew's treatment and with having a portion of it made available for Andrew to see a practitioner with a good record who is closer to home. The other three are related to specifically what you comment on, Mary: a request of LA and JDJ that they put this case behind them and move on.

    *
    The McMurdie family's requests:

    1. A real public accounting of the money of Little Acorns.
    2. Some amount of money for Andrew to pursue treatment with Dr. Sarah Myhill in Wales (if she will see him).
    3. Public apology for the things that Jamie Deckoff-Jones and Little Acorns have written about me and for the stress that our family has endured as a result of those public statements.
    4. Promise not to bring me up in public any more and to leave our family in peace.
    5. Agreement to take down from the Internet all information about this case if I do the same.

    http://hopeforandrew.wordpress.com/2012/08/14/our-familys-requests/
     
  12. currer

    currer Senior Member

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    Is this any of our business?

    The matter is best left for the parties concerned to sort out between themselves.
     
  13. Valentijn

    Valentijn Senior Member

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    It involves a somewhat prominent ME/CFS physician, so yes, I do think it is natural for it to be of interest to many of use
     
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