It’s been 12 days since I released my written statement about the experiences that my son Andrew and I have had with Dr. Jamie Deckoff-Jones and with the organization Little Acorns. As of this morning, my statement has been downloaded 1,468 times.

Shortly after releasing the statement, I made public a list of the things that our family is requesting. JDJ, LA and their representatives have ignored those requests entirely, consistently making it clear that they think that our family should unilaterally take down my blog and my statement “for the sake of the community.”

This is unfair. The things that we are requesting are wholly reasonable — merely what JDJ and LA should have given us to begin with:

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.

I thus am asking these parties to give my family the respect that we deserve in considering our requests and in working to fulfill them.

The photo on this blog entry is of me, my daughter Caitriona, and my son Andrew.

There have been some questions in the ME/CFS community about the extent to which my family members and I are making our own decisions regarding this situation. I thus thought that I would release a portion of the audio recording from one of the interviews, to give people a better sense of what my relationship with the individual who interviewed me has been like and to reassure everyone that Trevor (my husband) and I are calling the shots here.

For those who have yet to read it, my statement is here.

http://www.mediafire.com/view/?7jaub8mvd18f0iu

Thanks to all for reading my statement, looking at my blog and extending your support to our family.

Sincerely,

Jacqueline McGorrian McMurdie

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