1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
First Direct Evidence of Neuroinflammation - 'Encephalitis' - in ME/CFS
A small study with just nine patients has captured the attention of patients and researchers alike after reporting direct evidence of inflammation in the brain of ME/CFS patients. The finding was one of the highlights picked out by Professor Anthony Komaroff in his IACFS/ME...
Discuss the article on the Forums.

Josie eyes Hawaiian treatment in bid for better life

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

  1. Firestormm

    Firestormm Guest

    Messages:
    5,824
    Likes:
    5,969
    Cornwall England
    Hi Jayred,

    I posted the MindFood article here in full: http://forums.phoenixrising.me/index.php?threads/australia-mindfood-misdiagnosing-me.18593/

    I took the time to read all of Jacqueline's and those others' statement yesterday, and Deckoff-Jones's statement this morning on her blog: http://www.x-rx.net/blog/2012/08/reply-to-jacqueline-mcgorrian-mcmurdie-and-lisa-petrison.html and I'm sorry but I still have some major concerns about the whole debacle and about Deckoff-Jones herself (but that's nothing new so consider me biased if you like).

    I will refrain from going into specifics because they will only be considered 'false', being as they will be from Andrew's mother's statement - though I don't think they can be ignored - not the key points relating to e.g. providing a minor with a prescribed medication meant for an adult and that adult being herself a doctor who should know better.

    If you are going to fly across to the USA to take your child to see this doctor, then might I suggest you ensure that you are in possession of a clear treatment plan in advance? So that you know every step of the way exactly what and where any treatment will take place? You might even like to run the plan past a local doctor in your country - get a second opinion.

    I have never considered anything that this doctor offers to be in any way 'unique' as a form of treatment. You might find that once you know what is being offered e.g. oxygen, Deplin, neurofeedback and vitamin supplements, you can source them yourself with a qualified professional locally - or at least in your home country and mitigate some of this expense.

    I really do wish your daughter the best of luck but I would not place any faith in this doctor myself and yes I have been a regular reader of her blog which only continues to underline my concerns.

    Still, we do have this inherent and desperate need to try and find someone or something that can help us when all that has come before seems not to; and so long as this tantalising bait called 'hope' is dangled in front of us and we remain sick I doubt things will ever change.

    Good luck.

    FS
  2. Jayred

    Jayred

    Messages:
    10
    Likes:
    24
    Katoomba, New South Wales
    No, didn't know there was one. I mean the newspaper article that was at the beginning of this thread. :)
    (from the Blue Mtns Gazette ... where we live in the Blue Mtns, Australia!)
    Advocate likes this.
  3. Jayred

    Jayred

    Messages:
    10
    Likes:
    24
    Katoomba, New South Wales
    Oh, actually I said that the article in the newspaper was lifted out of the MindFood article, but that's not right! I remember now, it was actually what I wrote about my daughter as a fund raising blurb for people to know about why we were fund raising for her! :p Talk about a poor memory! :p
    Advocate likes this.
  4. Firestormm

    Firestormm Guest

    Messages:
    5,824
    Likes:
    5,969
    Cornwall England
    Sorry Jayed. I was editing my reply - see above. I realised my misinterpretation.
  5. Jayred

    Jayred

    Messages:
    10
    Likes:
    24
    Katoomba, New South Wales
    It's not so much that what Dr J has on offer is unique in itself, it's how she uses those things. She is highly trained in Oxygen therapy, and it is being used differently than others use it. Similarly with infusions. We have talked thoroughly about treatment plan and she has spent a lot of (free) time skyping with me about it.

    I won't go into the details re J M's statement either, but I do know that some of it is false and also skewed.

    I'm not sure why you don't like Dr J's blog, but a lot of people have been helped from it. Also, just by the by, Dr J says herself it is ridiculous that we are having to spend money and travel half the world to see her for this particular treatment approach, when it should be easily and readily available at home. That's one of the things we are hoping to be able to do when we get back - show that this approach is helpful and that doctors could be using it to at least alleviate symptoms and improve quality of life. So far, there is one dr here collaborating with her, and we are hoping that my daughter's doctors will also learn about this approach.

    We are not expecting miracles in going to see Dr J, but it is likely to improve things for my daughter to an extent, and it's more than is on offer here, barring treatments that have many risks attached.

    Thanks very much for your well wishes. :)

    Jayne
    Advocate likes this.
  6. Firestormm

    Firestormm Guest

    Messages:
    5,824
    Likes:
    5,969
    Cornwall England
    You are welcome. Can I ask you something and then I'll leave it?

    I have a diagnosis primarily of ME. I can understand how badly that affects my ability to perform especially with regard to my cognitive abilities and physical function.

    I can easily talk about who I was and what I once achieved, of the accolades I received, my qualifications, the vast sums of funds I managed, the number of clients I had, etc. etc. but I have ME now.

    I am no longer that person who was so capable and so recognised for being so. So how can a doctor perform a professional and responsible role whilst trying to live with ME?

    Deckoff-Jones has openly acknowledged how hard she finds coping with her condition and I don't think I could place my trust in someone trying to maintain the degree of professionalism that is implicit in being a doctor especially one treating children.

    Of course I appreciate (but don't necessarily agree with) the argument that she herself only 'understands' because she herself is a patient who has largely self-treated (which is another concern given what she has treated herself with), but this troubles me a great deal.

    Please don't feel the need to reply. It's just something I should have included above and thought about after I posted my comment.

    All boils down to personal choice at the end of the day, and I wish you both well.
    barbc56 and MishMash like this.
  7. Jayred

    Jayred

    Messages:
    10
    Likes:
    24
    Katoomba, New South Wales
    Well, my understanding is that Dr J only started treating again when she had some significant improvement in her condition and only took on a very few patients. I think since then, she has become ill again, due to stress and I believe she may only continue to write on her blog after we have seen her (she is fulfilling her commitment to us, as we started discussions and fund raising some months ago.). Of course, you would have to ask her about her patient load, but I believe this was just going to be a small trial to see if and how she might begin practising again.

    As to professionalism, I am not fussed about having a "professional" dr with all that implies - an office, a suit, behaving in a particular way .... etc. We have had many very "professional" doctors treat Josie who I would never recommend and who were either downright useless and/or, at times, truly abusive .... like telling a 14 year old that she didn't want to get better.

    I don't believe Dr J thinks she understands the condition of ME purely because she has it herself. She has a very scientific mind (I think) and is very good at analysing from that stand point; plus she does have 25 years of medical practice behind her, prior to becoming too ill to practise. She herself had no luck with the medical approaches that were available, so I guess she therefore spent a lot of time trying to understand the disease process for herself. But, of course, I can only comment from what I believe. You would need to ask her about it.

    Thanks again. :)
    taniaaust1 and Advocate like this.
  8. Jayred

    Jayred

    Messages:
    10
    Likes:
    24
    Katoomba, New South Wales
    Separate to all of that, I am sorry to hear you are living with this disease and that it has taken so much from you. I wish you all the very best and hope something may eventuate that will help. :)
    Advocate likes this.
  9. Firestormm

    Firestormm Guest

    Messages:
    5,824
    Likes:
    5,969
    Cornwall England
  10. slayadragon

    slayadragon Senior Member

    Messages:
    1,087
    Likes:
    369
    twitpic.com/photos/SlayaDragon
    I am interested to see that Jamie has removed two of the posts related to Andrew’s case from her blog. The ones that are no longer accessible are “Adventures with Andrew” (where she took credit for his improvements and then published an Erratum suggesting that they were instead possibly due to “removal of a biotoxin”) and “Reply to Jacqueline McGorrian McMurdie and Lisa Petrison” (which she published yesterday).

    The other two posts about this case, “Moving On” and “Elephant in the Room” are still up.

    I think that it is important that those interested in this case have the opportunity to read all the materials that Jamie previously posted, so that they have a full understanding of what she has stated about Andrew’s treatment and the McMurdie family. I have screenshots of both of these blog posts, and so if anyone would like me to send them a copy, please let me know.

    Best,
    Lisa
  11. Jayred

    Jayred

    Messages:
    10
    Likes:
    24
    Katoomba, New South Wales
    Perhaps not everyone wants to keep the whole thing going on and on Lisa, and would rather spend their energy elsewhere on positive things for the ME community?
    Advocate, anniekim and Sushi like this.
  12. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,078
    Likes:
    8,473
    Amersfoort, Netherlands
    I just finished reading the statements by Andrew's mother, the landlord in Hawaii, Little Acorns and browsing Dr Deckoff-Jones' blog again. First and foremost, this is your decision, Jayred, and I think everyone respects that.

    But I do think it's important to go in fore-warned (and fore-armed), if things do go badly again. My major concerns are that 1) both the mother and the landlord say that Dr Jones gave Andrew a prescription that was prescribed to someone else (Dr Jones herself). This is illegal enough when patients do it, and pretty shocking for a doctor to have done it. I would not be surprised if she is sanctioned for it.

    Another concern is that 2) they went to a lot of trouble to paint Andrew's mother as being unfit. Even if you don't believe the claims by the landlord and Andrew's mother about outright threats (calling the police, etc), they posted an update at some point making it sound like she was committing child endangerment by discontinuing treatment and possibly going to the airport to wait for a flight, without "his" meds. For starters, he was in no danger by missing a huge dose of folate (which is all Deplin really is), or oxygen, or neurofeedback, etc. Inflating claims like that makes them seem rather untrustworthy.

    But even if you disbelieve every word Andrew's mother, the landlord, and others have said, it should at least be an indication to proceed very cautiously. Know where every penny is going, know where you'll be staying, know how you'll have access to the food you want to buy, transportation, additional costs, tests, etc. Know the details of every treatment to be used, and the expected results, and research them yourself on the internet.

    The things she does are not provided by the NHS, but there are doctors in the UK and Europe that can and will provide similar treatment, and probably much more cost-effectively. You can buy the ingredient(s) of Deplin pretty cheaply, without a prescription, and oxygen is also widely available, if it's not at risk of causing dependency. I'm not sure what the neurofeedback is supposed to do for ME, aside from annoy us :p

    PS - Dr Jones thinks HIPAA (American laws regarding patient confidentiality) don't apply to non-Americans being treated in the USA, according to her own statement on her own blog. She is completely wrong, and that sort of utter cluelessness on a pretty important issue taught prominently in med school is very worrying.
    MishMash likes this.
  13. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,078
    Likes:
    8,473
    Amersfoort, Netherlands
    Dr Jones deleted that entry from her blog, but it's still in google's cache at http://webcache.googleusercontent.c...ine-mcgorrian-mcmurdie-and-lisa-petrison.html
  14. Jayred

    Jayred

    Messages:
    10
    Likes:
    24
    Katoomba, New South Wales
    Hi Valentin, Thank you for your concern. The reasons I am quite clear about going are as follows:
    1) I have had numerous skype sessions with Dr J, all of which have been helpful and informative, with her being very open about her situation and what she is offering.
    2) I also have a lot of contact with another mother and daughter who have seen Dr J. The daughter has benefitted enormously over more than a year from Dr J's treatment approach (which the elements of are available elsewhere, but not her particular protocol). Their experience of Dr J is absolutely completely opposite to that of the mother you are referring to - they have found her to be knowledgeable, caring, compassionate and helpful, if somewhat casual in appearance (what a way to judge someone!).
    3) I also have had contact with the mother in question (in this thread), and have quite a different impression to what is being portrayed; this includes being harrassed by her recently in quite a nasty manner (I felt). But also during her stay in Hawaii, we had a few conversations which do not tally with her report. I do know that her and her son left Ireland very very suddenly and hence Dr J went much earlier than planned and somewhat less prepared than she would have been otherwise. I believe the flight from Ireland was to do with other doctors that they felt were trying to stop them going .... You would have to check on that. So, perhaps another reason the Deplin (which is not at all dangerous) was given out of Dr J's supply, was because the prescription had not had time to arrive in Hawaii for Andrew. I agree it's not a "proper" thing for a dr to give her prescription, but in this case, it was situational, it is a harmless medication and I believe it was done as a kindness, rather than to do something terrible.
    I am not someone who thinks everything should be judged according to "normal standards", but would rather judge based on a person's motives and character - and I believe Dr J to be genuinely kind and wanting to help others (albeit sick herself and sometimes stressed). To tell the truth, we have had encounters with many doctors over the years who are entirely professional, stay inside "the box", follow all the rules and regulations etc and were quite awful people ... I know which I'd prefer.
    I tend to think there was a lot of misunderstanding involved in the whole situation in Hawaii that could have been remedied by calm and clear communication - just my impression. I don't think there is a need for it to continue to be aired publicly and blown out of all proportion, and my personal belief is that it is a bit of a witch hunt. It would be better if the parties concerned stopped undermining the ME community by keeping on pushing their agenda, and dealt with it privately (just my opinion).
    By the way, we are in Australia! I have booked our accommodation after much searching online, and Dr J did give her recommendations, and I have chosen based on what seems to suit. I was told about the rural nature of the place and the facilities ages ago (so I'm sure J M would have been told?) and I also have hired a car from here. In fact, I think maybe JM and her son were not prepared simply because they left so suddenly and earlier than planned?? I imagine so anyway. It was then expected Dr J would be able to cater to them ... and I believe it was known she has ME and needs to manage her time wisely.
    Also my daughter is 21 (8 years ill at home and in bed) and very capable of assessing Dr J herself and she is keen to go and likes Dr J.
    So, thank you all for your concerns. We aim to go at the end of September and spend the month of October there. We will of course let everyone know how we go! :)
    Advocate, anniekim, justy and 3 others like this.
  15. Foggy

    Foggy

    Messages:
    76
    Likes:
    17
    Australia
    I've not noticed a paradigm shift in Australia, just informed journalists and the occasional Dr (about 1 in 10 million on the medical front!).
  16. Jayred

    Jayred

    Messages:
    10
    Likes:
    24
    Katoomba, New South Wales
    It's slow, but it's happening a little bit ... As I said, the person who wrote the MindFood article is my niece, so she is well informed and very keen to disseminate and educate with correct information. Plus there is a dr here now who is actually diagnosing ME as opposed to CFS. Our particular dr will not change from CFS :( ... don't know why - he thinks it's all CFS and there are subcategories he has defined ... Also, Dr J is collaborating with at least one dr here that I know of, so that hopefully will be a good thing. We're hoping to do more here to educate when we get back from Josie's treatment o/s. :)
    Advocate, Ember and merylg like this.
  17. Advocate

    Advocate Senior Member

    Messages:
    506
    Likes:
    14
    U.S.A.
    Several have expressed interest in an accounting of the money that was raised and spent by Little Acorns on behalf of Andrew McGorrian. The statement below was posted on the Little Acorns website today. I used www.unitconversion.org to convert the pounds to dollars, and added the dollar amounts to the document Little Acorns posted. I made no changes or other additions. Advocate

    [align=center]14th August 2012
    LITTLE ACORNS STATEMENT OF INCOME AND EXPENDITURE[/align]

    http://www.little-acorns.me.uk/little-acorns-statement-of-income-and-expenditure.html

    This Statement of Income and Expenditure represents an account of the receipts and payments received and made by Little Acorns Fundraising Group since its inception. Little Acorns Fundraising Group is taking steps to register as a Charity and thereafter, a set of Charity Accounts prepared in accordance with the Charity Statement of Recommended Practice (SORP) 2005 will be produced and made public. These accounts will be made up to a year end date, yet to be decided. Should the total income figure for that annual period exceed £25,000, the Little Acorns Fundraising Group will have the accounts indepedently examined as required by CC31 – 'Independent Examination of Charity Accounts: Trustees' Guide' .
    LITTLE ACORNS FUNDRAISING GROUP

    STATEMENT OF INCOME AND EXPENDITURE

    Note £ £

    INCOME

    Sums raised through fundraising activities 22,686.64 ($35,651.08)

    EXPENDITURE

    Air Travel 1 6049.20 ($9,506.33)

    Financial 2 310.78 ($488.39)

    Sundry medical expenses 3 60.45 ($95.00)

    Rent 4 4500.00 ($7,072)

    Wristbands 5 370.00 ($581.46)

    Sundry expenses 6 1100.69 ($1,728.65)

    Medical costs 7 4948.99 ($7,777.34)

    SUB TOTAL 17340.11 ($27,250)

    FUNDS REMAINING (prior to Exceptional Item) 5346.53 ($8,102.08)

    Exceptional Item 8 3189.13 ($5,011.72)

    FUNDS REMAINING 2157.40 ($3,390.36)



    NOTES TO THE INCOME AND EXPENDITURE STATEMENT OF ACCOUNT

    Accounting Policies

    Foreign Exchange: all amounts have been translated at an average rate for all conversions.

    Notes to Statement £

    1. Air Travel:

    This comprises three items.

    US Airways flights JFK to Kona Hawaii 2 first class tickets 1859.60 ($2,922.36)

    US Airways flights Kona Hawaii to JFK 2 first class tickets 1859.60 ($2922.36)

    Aer Lingus Dublin to JFK three economy class tickets 2330.00 ($3,662)

    Total 6049.20 ($9,506.33)

    2. Financial

    This comprises four items:

    Travel Insurance 166.34 ($261.40)

    Visa Waivers 18.70 ($29.39)

    SWIFT fee for funds transfers 75.00 ($117.86)

    DHL to courier Jacqueline McGorrian’s driving licence 50.74 ($79.74)

    Total 310.78 ($488.39)

    3.Sundry Medical Expenses

    This amount comprises the provision of an Air Purifier for the flights for Andrew McGorrian.

    4. Rent

    This amount was paid to Linda Halbritter for a term of 8 weeks. No refund for unused rental term has been received. Included in this sum was £523.90 ($79.74) given to Jacqueline for food, petrol and sundries.

    5. Wristbands

    This amount comprises the cost of 550 adult plus 550 childrens Little Acorn Wristbands (£355.39) ($558.50) and the associated customs payable thereon (£14.61) ($22.96).

    6. Sundry expenses

    This item comprises the following:

    a- Petrol costs of Andrew McGorrian’s travel in Hawaii - £145.10 ($228.02). Jacqueline McGorrian forgot her driving licence (see Note 2 item £50.74 DHL courier charge) and so Dr Deckoff Jones had to act as chauffeur.

    b- Dinner for three - £33.73 ($53.01)

    c- Netflix for Andrew McGorrian’s laptop - £11.32 ($17.79)

    d- 5 nights rent for Jacqueline and Andrew’s first accommodation including 13% tax – £349.90 ($549.87) + Professional cleaning services, pre and post - £97.79 ($153.68)

    e- Car Hire for Jacqueline paid until 20th July, no refund given – £462.85 ($727.37)

    7. Medical Expenses

    This item comprises the following:

    a- Oxygen Concentrator - £337.14 ($529.82)

    b-Clinical Laboratory tests - £1422.10 ($2,234.83)

    c- Pharmacy costs - £233.30 ($366.63)

    d- Chiropodists and Podiatrists fees - £444.22 ($698.09)

    e- Petty cash and Dr Deckoff Jones fees - £2512.23 ($3,947.97) of which Jacqueline received £261.95 ($411.65) for food, petrol and sundries.

    8. Exceptional Item

    This item represents the total cost of the changed arrangements due to the breakdown in relationships between Little Acorns Fundraising Group and Jacqueline McGorrian.

    There are two sub groups here:

    A- Costs associated with Jacqueline McGorrian – total £1400.00 ($2,200.10)

    The individual amounts comprising this total are listed below. This cost was reimbursed to Linda Halbritter, landlady of the rented property, via a third party and Little Acorns Fundraising Group then refunded this third party. Linda Halbritter had originally incurred these expenses.

    a- US Airways flight changes - £509.10 ($800.05)

    b- Aer Lingus flight changes - £584.73 ($918.90)

    c- Hotel Stopover in New York (2 nights) - £257.46 ($404.60)

    d- Paypal charges - £48.71 ($76.55)

    B – Costs associated with Dr Deckoff Jones – total £1789.13 ($2,811.62)

    a- Change of flight plans as a result of changed flight plans of Jacqueline McGorrian and associated costs - £1789.13 ($2,811.62)

    9. Treatment of donations

    Little Acorns Fundraising Group accounts for donations on a FIFO (first in first out) basis in accordance with industry practice.
  18. Firestormm

    Firestormm Guest

    Messages:
    5,824
    Likes:
    5,969
    Cornwall England
    Sad news:

  19. MishMash

    MishMash *****

    Messages:
    445
    Likes:
    479
    Georgia
    I used to read Dr. Deckhoff-Jones blog regularly for a few years. She seemed highly intelligent and insightful. I stopped because all her posts were so psychologically overwrought they were exhausting to read. It was like each new post was like a death match of words. Just read what she has posted now. And the people commenting (back then) just fed on her antagonisms and frustrations.

    Also, I didn't care for her use of HIV-intended anti-retrovirals first on herself then on her daughter. It was all the rage with her two years ago when the XMRV thing was still current. I guess she stopped. I can't condemn her because she is desperate, just like many of the readers here. Previous posters are right: you can get the same treatment in your native country as you can traveling all the way to Hawaii. There are doctors in Australia, somwhere, who will give you oxygen and Deplin; I'm sure of it.

    It reminds me of when Dr. Cheney moved to "Bald Head Island, NC" and the only way to access the damn place was to take a rickety ferry. Making an appointment was amazingly hard, his staff was incompetent, and it was extremely expensive for the advice you got. And on top of all that, he hides himself in a remote location where practically invalid, desperate patients can't get to him. The judgement of some of these CFS specialist docs amazes me sometimes. It's very sad that so many families spend their last pennies to go see them.
    Adster and Valentijn like this.
  20. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,873
    Likes:
    4,797
    Sth Australia
    Oh that is terrible situation.... poor poor Andrew.

    What I find strange is how his father had to like sneak away... and how his wife is bad mouthing him for leaving and actually went and and has publically shame him for that (if he was going to decide to go back to the family I do think it would be even harder now that everyone is laying blame on him).

    Everyone can reach their breaking point, those who have ME and the carers of those who have ME, this illness can be emotionally almost just as hard on our carers (anyone may need a break at some point).... thou I dont know this family at all, I think iits sad he's been publically shamed in this way. He probably needed more support.. (the whole family is probably needing more support). Seeing ones child day after day as sick as Andrew is, must be shattering.

See more popular forum discussions.

Share This Page