There has been a ton of hilarious drama going on with the XMRV fiasco, but I havent been writing about it because I dont actually care. I 'cared' about Chronic Fatigue Syndrome because it was associated with a retrovirus. Turns out it was all a mirage-- The retrovirus known as XMRV is not infecting humans, and wouldnt be able to even if it wanted to.
So Judy Mikovits hiding on a boat and the Whittemores pissing of the Feds and the Mob, while fun for day-time soaps, is not real interesting for me as a science blogger (Note to Mikovits-- your shit was contaminated by XMRV plasmid or artificially generated by inducing expression of ERVs. Keeping a vial of free virus in the same freezer as your samples doesnt get you out of this mess, chick. Also, if your shit was contaminated, and you 'knew' it July last year, why didnt you voluntarily retract?).
Why am I writing about this topic again now, then?
Because the XMRV fiasco has moved from the realm of basic science stupidity into Oracs world of physicians and scientists betraying the principles of our respective fields to administer 'alternative therapies' (read: stupid shit they are just pulling out of their asses, or else they would be in double-blind clinical trials) to desperate patients: Judy Mikovits and Jamie Deckoff-Jones.
Now, it would be one thing if these one-brain-cell wonder-twins were 'treating' sentient adults, free to do whatever stupid shit they want with their health.
But alas...
Their guinea pig is a damn eleven year old kid.
You can download the moms account of events (along with some other observers) here-- I had to click on the green button in the center of the page to get a pdf. The thing never loaded online. It is LONG.
When I fist caught wind of this, I was horrified, thinking that those two women were giving antiretrovirals to the kid. Thankfully, that does not appear to be the case. It appears their Super Awesome Magical Therapy is the same crap wooers have been pushing since the dawn of time the Age of Aquarius-- 'Oxygen therapy', vitamins, voo-doo potions via IV, whatever.
Dr. DJs other super ideas allegedly involved video games 'biofeedback exercises on an iPad' and coffee/energy drinks. Video games, sugar, and caffeine. For a kid. Dont laugh. Its not any more stupid than the other crap people in her line of 'work' make up.
Judys contribution was allegedly some protein powder and vitamins from a company she works for, Pharmanex, which is totally not a MLM. Its *not*. For *real*. Several states have investigated and Pharmanex settled without admitting any wrong-doing. But it doesnt take a massive intellect like Judys to notice it would be GREAT for Judy to get people thinking that her companys products do anything for CFS (without any double-blind clinical trials to back that up).
Though I was dreading reading that document, dreading seeing what those awful people were doing to that kid (and the moms account of what happened is disgusting), the story has a happy ending. Mom wised up before things went from Bad to Really Bad (or Dead Kid). She ran into some nice people, including nice regular ol MDs, who helped her and her son, and got them back home to Ireland (Dr. DJ was 'treating' the kid in a rented house in Hawaii. Seems legit).
But while this kid got away, Dr. DJ and her husband appeared to be ready for more 'patients'.
... I hope there is never a 'Part 2' to this post.
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This isn't about biofeedback (which has significant benefits, but has nothing to do with this story), nor about noble MDs saving a stupid mom and kid, nor about Judy Mikovitz for that matter. This is about apparent malpractice and abuse by one doctor with possible emotional problems toward a patient for whom there were donations to be exploited. According to this mother's testimony, Dr. Deckoff-Jones tried to give her son unnecessary oxygen and some sort of supplement that had been prescribed for her (DJ), then insisted that he have some sort of IV from which he might need to be "resuscitated" yet which she wanted to give at her house. When the mother refused all of these and said that she wanted to go home, DJ threatened to have her child taken away by the American CPS. Dr. Judy Mikovitz, who admittedly has looked like a huge fool in other contexts, had nothing to do with DJ's treatment; in fact, she was talking to the mother by phone telling her that the various things DJ was pushing were unwise and risky and should be refused. That hardly makes her DJ's "wonder twin."
It was after that that the mother consulted the nice regular ol' MDs about an ear infection her son was suffering (so they get no credit for her refusing anything that could in theory or imagination have led to "Dead Kid"). One was a nearby pediatrician, but the other was some sort of alternative practitioner, maybe a DO. One of these suggested vitamin D supplements which may be somewhat reducing the disability the boy has suffered for two years following an acute viral infection. I suspect that the DO was the responsible party there, not the regular MD. Hopefully the supplement will do some lasting good.
Some one should file a complaint with the State of Hawaii against Dr. Deckoff-Jones for an investigation of her treatment with regards to Andrew. Dr. Deckoff-JonesJamie is licensed in that state. I am concern she prescribed medication that was intended for another person a clear violation of State law. She should reveal the medication that was in her name that was given to Andrew and whether that medication required a prescription.
Someone in Ireland should investigate Little Acorns and ME Alliance for possible fraud with regards to the fund raising aspect and the subsequent allegations made by Jacqueline McGorrian McMurdie. At the minimum, there should be an accountability of all funds used and not just a statement that so much money went to Dr. Deckoff-Jones for treatment.
There should be an itemize listing of all costs and expenses for the entire episode involving Andrew with Little Acorn, the ME Alliance and Judy Mikovits involvement especially since she is not a physician and does not have a medical license to treat or diagnose any patients whatsoever! Neither Judy Mikovits nor Dr. Deckoff-Jones should be treating or diagnosing patients via Skype.
Erik Johnson 'Mold Warrior' believes the cause of ME/CFS of at least a subset is caused by mold as he has stated he was significantly relieved of his symptoms via avoidance of mold. There has been no proof other than anecdotal accounts.
Are I can say is Wow! Dr. Deckoff-Jones gives a totally different perspective. It is odd that Jacqueline McGorrian McMurdie posting was blocked on Jamie's blog as she has stated repeatedly, she would not block any postings to her blog.
Dr. Deckoff-Jones should come 'clean' with the truth and an itemized expense report associated with her costs including the name or names of the neuro-bio feedback program and game or games, Andrew was using. Especially her comments made by Jamie that there might be an irreversible personality change with Andrew on her treatment protocol.
This was posted on Jacqueline McGorrian McMurdie bog site by a commenter..a person by the name of Lisa. I don't know her involvement in all this but she posted a blog post by Dr. Deckoff-Jones in response to Jacqueline McGorrian McMurdie response accusing legal action for 'cyber stalking' and libel. Since then she had removed her blog but can still be accessed as Lisa post has stated at:
http://webcache.googleusercontent.com/search?q=cache:aKnAx6EWUVMJ:www.x…
Apparently, Jamie's reference to an Irish bar fight is just beginning to get started.
There are too many people dying from the disease to call it "hilarious drama".
The mom's blog is here:
http://hopeforandrew.wordpress.com/2012/08/03/going-public/
Re references to Lisa Petrison and Erik Johnson: ME/CFS patients owe them a lot ! Without any self benefit, they've been working for years to inform patients of their best chance at leading a normal life: mold avoidance. Almost all patients who try this can function again. Many other patients can function when close to tropical seas. Unfortunately, ME doctors aren't interested in these topics, while their patients rot. ME doctors are irrelevant for the most part. I wipe my $#@ with their diplomas.
Mikovits’ role in this is very revealing and far from acting in some kind of protective capacity in the face of Deckoff Jones disturbing attitude, Dr Mikovits only added to the snake oil burden that was being heaped upon the patient. The mother’s statement makes it very clear that Mikovits was speaking with medical authority (for which she has no qualification) in ‘prescribing’ (by phone !) supplements of uncertain effect, for use by a child who is ill with a disease of unknown cause and consequent unknown vulnerabilities. This is bizarre behaviour from someone who wants to be taken seriously as a researcher of the aetiology of M.E/CFS and strongly suggests a scientist who has completely ‘lost the plot’.
Mikovits at least appears not to have been party to the exploitation of the child in terms of his total loss of privacy regarding his medical treatment, and putting aside the potential harms of Deckoff Jones’ treatments and Mikovits’ Pharmanex supplements, this loss of privacy is perhaps the most disturbing aspects of a very nasty tale.
Deckoff-Jones had a long, rambling and somewhat confusing apologia on her blog about this incident, (without mentioning an ear infection), but it looks like she took it down.
>Deckoff-Jones had a long, rambling and somewhat confusing apologia on her blog about this incident, (without mentioning an ear infection), but it looks like she took it down.
Joe appears to be referring to the blog post "Reply to Jacqueline McGorrian McMurdie and Lisa Petrison," published by JDJ on August 3.
If anyone wants a screenshot of this, please let me know.
lisapetrison at y-hoo
Well, she might have gotten some legal advice, especially as she was going on and on about the folate thing. And as she quite obviously used her own pills instead of writing a prescription for the kid, that would be big no-no on every state licensing board's list.
Interesting caveats about JMJ being broke, I always wondered how someone who's too ill to work manages a lifestyle with homes in Santa Fe, Sedona and Hawaii.
@Joe
On teh internets things can live forever (surviving the pandemic apparently)
http://w01.freezepage.com/a/13441/62872QJFTKNENCI/0
@IVF Thanks. I remember that when reading Deckoff-Jones account that it did not really add up, and it was little odd that she felt the need to post a copy of her diplomas. Andrew's mother's account is much more coherent and believable.
I do believe that CFS is real, and the reports of improvement with rituximab may point to an autoimmune etiology, (perhaps triggered by an infection as is the case with other autoimmune conditions such as reactive arthritis or rheumatic fever). But of course much more study is needed.
But, I also believe that many of the people who self diagnose themselves with CFS have mental illnesses such as depression or somatization disorders which can present with similar symptoms. I suspect that Deckoff-Jones may be in the latter category, and that her and her daughter's CFS may be a case of "Folie a deux." (Of course this is just an armchair diagnosis).
With respect Joe, your armchair diagnosis is not helpful. The disease not only robs you of energy, but robs you of cognitive abilities. As one stays ill it can rob them of their personality as well. Whole families can be sick in some cases.
While JDJ obviously shouldn't be treating people who are sick, is is wrong of you to label her or her daughters the way that you did.
Nothing like a good light entertainment, after all, going after Ruscetti would be so boring – and I guess it would take a much greater effort. You downloaded a doc and read it halfways, when you could FOIA'ed some emails from Frederick to aim at some high profile target – but that would be such a drag if you want to find a job, like EVAR. And if the low-hanging fruit Mikovits is too high for you, you can always aim at JDJ! Go Abbie, you rule!
Normal person:
Jerk:
Dear Ian McIlroy, Jerk, ME Alliance Northern Ireland--
The commenting system at SciBlogs has gotten better, but there are still 'quirks'. Normally I fix the 'quirks' every morning and ever evening, but I am currently on vacation (I get about 4 days of vacation a year) in a rural area with limited internet access.
You escalated this very, very minor bit of confusion amazingly quickly into 1) attempts to censor other commentors and 2) attempts to restrict my free-speech rights. Absent an apology, do not bother trying to comment at ERV in the future.
Yours in Christ,
Abbie Smith
Fighter, MP 999
Final Fantasy
YiC, are you making fun of the good Ian? He's so not going to invite you for a Guinness.
@Wayne
I think that when you are dealing with people with CFS, especially those who self-diagnose, you are dealing with a heterogenous population that includes some people with depression/somatization/somatiform disorder, etc. That will be the case until further research uncovers the actual etiology and pathophysiology of the condition which will lead to better case definitions and testing.
Also, understanding the etiology, pathophysiology and developing more precise case definitions or developing a useful diagnostic test will also help ward away a lot of the "woo" that tends to surround CFS.
Ian McIlroy, Super Jerk Committeeman, ME Alliance Northern Ireland.
You kicked Jacqueline Mc Gorrian Mc Murdie off the board for what purpose? That her child didn't have ME/CFS but wanted a free trip to La, La, Land to receive magical beans from JDJ so as to deceive everyone as JDJ and Acorn is implying?
"I think in fairness that Andrew deserves more respect from the ME community. I think Little Acorns were very wrong in making their statement. ME Alliance has heard one
side of the story, and because of that, they have made a decision that I should no longer be part of ME Alliance of Northern Ireland. To be honest, when they made their posters and their leaflets for ME Alliance, I think that four of their pictures included my sonʼs illness and how he coped and how he was portrayed in the media. Andrew has done a lot for ME Alliance as well. Not just me."
So 'Fuck Off' Ian McIlroy, Committeeman, ME Alliance Northern Ireland and get your own house in order instead of making your threats on here.
Yours Respectively,
Tina
A new blog entry from Jamie Deckoff-Jones.
http://www.x-rx.net/blog/2012/08/a-tempest-in-a-teapot.html
My response to Jamie Deckoff-Jones' accusations.
https://docs.google.com/file/d/0B7A3lHR1hqW5TnF6NWJTRTFHYXc/edit
An addendum to the discussion in the link in my post above, just sent to me from [Patient X].
From: [Patient X]
Date: Tuesday, May 24, 2011
Subject: Btw
To: Jamie Deckoff-Jones
I don’t know if you were referring to this in your blog comment, but Lisa never once advised me to wean off benzos. It was 100% my own choice and I would never actually advise anyone else to do it.
Sorry Lisa but I think you should have stuck to the Andrew debacle.
Engaging with Jones over this just places you in the same box I'm afraid.
Jones has not addressed the main aspects of our concerns over Andrew's care or lack thereof - she has turned it back against you and made it even more personal.
You have little to lose. She does. Or thinks she does.
It's up to Andrew's mom to take things further with Little Acorns and Jones if she wishes of course. But Jones has successfully baited you.
It's a shame and shouldn't have been used to distract from the appalling situation that was revealed and which Jones has not addressed directly in her response.
I agree with you, Jack.
This is a very nasty game to be involved in. I wish I were better at playing it.
Well it has all gone completely off the point and is firmly in bonkers-ville now.
http://www.x-rx.net/blog/2012/08/a-tempest-in-a-teapot.html#comments
And she still thinks that scientists and medical professionals are reading this shit?
I had after christmas a few weeks where I was unable to sleeo, always tired, gritty-eyed tiredness too, and it looks like it was a bit of blood infection from a bad case of jock-itch because after a bit of work treating that problem, I was getting to sleep properly within a few days.
A problem can exist as a tertiary corollary of another problem.
Main reason I came is that elevator guy debacle has a geek hacker entry now,'though the error on the part of the dickhead isDEFINITE and IS the bloke here.
Short version, vegas defcon. Twonk goes up to a woman at thebfest and puts his hand up her skirt, grabs her crotch.
I have no problem attributing 100% of thebevil to the bloke here.
What makes it an elevator guy is that this is being used to complainh that sexism is rampant in the geek culture. This is where I partbways with thebagreement in thebsentiment of the story.
One thought on the dick is that he-s heard of julian asange raping womn (which is complete bollocks, but useful psi ops propoganda), heard of the women tweeting about how grea JA was and drawn a conclusion that geek girls are gagging to be raped.
Possibly not a gek, even. It's not as if there's an entrance exam.
Brought up as an unintended consequence of US media repeatingnany old bollocks, as long as it's officiak.
As a bit of errata, the Daily Beast article has been updated to say that XMRV was placed in the same incubator as some WPI lab samples, not an ice chest or whatever. The funny thing is that V99/Steve Carter/Myalgic Encephalomyelitis/XMRV/HGRV Global Fuckwit/Etc. has been going around for the past several years saying that the WPI labs never even had XMRV in them in the first place and therefore no contamination would even be possible to occur, despite several sources stating that Silverman sent Mikovits XMRV plasmid very early on in the process in like late 2007 or early 2008. In fact it appears (note my lack of education showing) that it was necessary for the WPI to have cultures of XMRV before their research into XMRV could even begin! This of course was big news to the messedupforums crowd who were all this time later still under the mistaken assumption that the WPI had never even had XMRV in its premises to begin with.
It's wild to think about how much misinformation that this one spectacularly mis- and/or uninformed individual, V99 (and her various alternate personas), has been able to almost single-handedly convince most all of the other posters on the messedupforums and elsewhere that there is some grand conspiracy going on in XMRV/MLV/'HGRV'/etc. research despite it being shown again and again and again that this person has basically no idea whatsoever as to what she's talking about and simply makes shit up right out of her ass, like for instance how supposedly Science not only knew about the mislabelled gel in the Lombardi paper but actually it was Science who ordered the gel's labels changed in the first place in order to 'simplify' the process or some such shit!
From the Daily Beast article- "In the summer of 2011, Mikovits and her young lab assistant, Max Pfost, began poring through their notebooks, trying to find where such a contaminant might have entered their process.
In July, she says, she found it—an entry from March 2009 indicating that a culture of the XMRV virus had been placed into the same incubatorwith the rest of the lab’s blood samples. Mikovits says she was out of town the day this occurred."
"Editor's note: An earlier version of the story said that in March 2009, a culture of the XMRV virus had been placed in an ice chest; in fact the culture was placed in an incubator."
http://www.thedailybeast.com/articles/2012/07/23/how-research-into-chro…
V99 is living proof that parrots can also learn to type.
Don't be unfair to parrots! :)
The mom has a new blog post.
http://hopeforandrew.wordpress.com/2012/08/14/our-familys-requests/
http://me-advocacy.com/Amanda_McKenzie_affidavit.html
Oh man you guys. You guys have got to read this shit, seriously. It's the most insane thing you've read ever in your entire life I guarentee you. Think about all of the crazy shit you've read in the whole XMRV debacle yet this is the craziest of all. Inspector V99 is breaking it down old school style! Hahahaha!
As much as V99 is a raving lunatic, I have to give her props since every once in a while she can say something humorous and/or insightful. Not necessarily in this 'analysis' but just in general.
Nah. I can't be arsed. You know if these people had genuine concerns you'd think they'd raise them with the WPI wouldn't you? Instead of spouting this kind of shit. What's the bloody point? Who does it help - Mikovits? Hardly. Idiots.
Try this latest one on for size:
http://me-advocacy.com/Blood_does_not_come_cheap.html
Rather a good return for very little effort:
"Medical costs 7 £ 4948.99"
"7. Medical Expenses
This item comprises the following:
a- Oxygen Concentrator - £337.14
b-Clinical Laboratory tests - £1422.10
c- Pharmacy costs - £233.30
d- Chiropodists and Podiatrists fees - £444.22
e- Petty cash and Dr Deckoff Jones fees - £2512.23 of which Jacqueline received £261.95 for food, petrol and sundries."
Makes me wonder if there ever was a contract?
http://www.little-acorns.me.uk/little-acorns-statement-of-income-and-ex…
Hi all,
This looks interesting Dr O'Keefe has found MLVs in benign prostatic hyperplasia and today on her blog Dr O'Keefe mentions that a paper by her lab has been accepted for publication by Nature today.
It's called.....
Activation of innate anti-viral immune response genes in symptomatic benign prostatic hyperplasia
http://okeefe-lab.blogspot.co.uk/2012/08/activation-of-innate-anti-vira…
No little girl, Genes and Immunity may be owned by Nature, but being published by G&I is not the same as being published in Nature.
Hi Ishmael, sorry for the mistake, I should have said Genes and Immunity owned by Nature.
Thanks for pointing that out!