Prev-IndexNL-Next

Nederlog

December 30, 2012


me+ME: Dr Jamie and Dr Judy mean very well...



If men in majority were good or intelligent, history would be completely different from what it is.

MM - Comments on Chamfort's Maximes-1.31





Sections
Introduction   
1. Dr Jamie and Dr Judy mean very well...
About ME/CFS


Introduction:

Yesterday there was the news that Cort Johnson, once the owner of Phoenix Rising, "left" it; today find Dr Jamie and Dr Judy in warm embrace on the former's website.

I discuss the last item, and note I added a note today to the first item, and also repaired a link and some typos.

1.
Dr Jamie and Dr Judy mean very well...

...at least, that is what Dr Jamie wants people to believe. I find it Public Relations prose, and explain why.

To begin with, to explain my title, Jamie Deckoff-Jones is a medical doctor who says she has ME/CFS, and so has her daughter. I am inclined to believe her about this, simply because it is not in her personal interest, or that of her daughter, to say so if she were not ill and did not have the symptoms that go with the diagnosis. (These I find best rendered by the ICC, and I suppose, but do not know for certain, that she agrees.)

Judy Mikovits (<- Wikipedia link) is not a medical doctor, but has a Ph.D. in biochemistry and molecular biology, with Frank Ruscetti Ph.D. as promotor. Together with Ruscetti, Lombardi and some others, while working for the Whittemore Peterson Institute (WPI), she wrote the paper
"Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome", that was published by Science in October 2009, that gave much hope to many patients with ME/CFS, and (temporary) fame to herself.

This did not pan out as claimed or hoped: In december 2011, the editor of Science retracted the paper, after a number of difficulties with it had been shown, and after quite a few efforts to confirm the finding had failed to find it. Since then, after a study led by dr. Ian Lipkin in which Judy Mikovits Ph.D. and quite a few other medical doctors and biochemists participated, and also after having been dismissed by the WPI, and then arrested on the ground of having removed the lab books of the WPI, "Dr. Judy", as Dr. Jamie writes, agrees the withdrawn paper was incorrect, and that in fact the XMRV that was reported in the paper was due to contamination.

The last three paragraphs will probably be contested by few. Those who have followed the story as it developed will know there is much more that might be told in the present context, but I will not do it here, and only refer to Wikipedia and my own summary of events and my opinions on October 8, 2011, when I definitely gave up on the XMRV-hypothesis.

I do presuppose some more background knowledge than I have just summarized but since the real story, if adequately told, is quite long and quite complicated, I will not attempt to tell it.

There are at least three more facts that need to be mentioned before turning to an analysis of Dr. Jamie's last  bit of blog prose, that can be found here, under the title I provide, that include the quotation marks I supply
The first fact is that Dr Jamie and Dr Judy are friends. I do not know how Dr Judy has supported or helped Dr Jamie, though indeed I suppose she has, but I do know that Dr Jamie has written rather a lot in support of Dr. Judy. This is also related to the second fact: Dr Jamie has strongly supported the XMRV hypothesis. And the third fact is that both Dr Jamie and Dr Judy have worked for the WPI, and know Mrs Annette Whittemore, who is the director of that institute, and both have been dismissed and since then have a low opinion of both the WPI and Mrs Whittemore.

I mentioned these three facts not because I see anything wrong or worthy of blame in them, but because they seem relevant to the discussion that follows, that is, on my part, mostly caused by my dislike of
Public Relations prose.

Now to Dr Jamie's prose, that goes under the above title, which also is a link to the text on Dr. Jamie's site, and that starts of thus - and I quote in blue and by indentation:
Dr. Judy’s bankruptcy was final yesterday. She has lost everything financially. Let’s hope the vengeance is now complete. Her homes are being sold and she still doesn’t have her notebooks. She isn’t working as a lab scientist because of the Whittemore’s defamation of her character, despite Dr. Lipkin’s support.
Dr Judy's bankruptcy is news for me, though it was to be expected, after the civil court case of the Whittemore's against her. The "vengeance" is presumably that of the Whittemores, and especially Mrs Annette Whittemore.

Much of the rest is loaded prose, as indeed is the term
"vengeance", though I would not be amazed that is what it is. Even so, Dr. Judy presumably has had to sell her "homes" (can one have more than one?) either to pay the Whittemores or to pay her lawyers who defended her or both, which is to say this is the result of one or more court cases she lost.

These court cases were at least in part about the "
notebooks" that Dr Jamie says Dr. Judy "still doesn’t have" - whereas Mrs Whiittemore, through her lawyers, said these "notebooks" were taken by Dr Judy's assistant at WPI, Max Pfost, and handed to her, and were eventually found in one of Dr Judy's "homes", but never fully restored.

I do not know the real facts, but I do know Dr Jamie's summary is slanted, which is also true of her statement that Dr. Judy "
isn’t working as a lab scientist because of the Whittemore’s defamation of her character": I think considerably more is involved than just that, such as: loosing court cases, being accused of receiving stolen property, having produced failed science, being co-author of a paper that Science's editors retracted, and having claimed a whole lot about XMRV for well over two years that she now denies, directly or by implication.

I come to the last point in a moment, and first quote a bit from the Wikipedia article on Dr Judy, minus the numbers to the notes that are:
Mikovits has garnered criticism from some scientists for stating that XMRV is a communicable infection which is "clearly circulating through the population as is our fear and your fear". Virologist Vincent Racaniello responded to that, saying that it "is just inciting fear." Mikovits showed slides at a conference which linked XMRV to Parkinson's disease, autism and multiple sclerosis. However, there is no published evidence that XMRV is associated with these diseases.
These seem to me to be better grounds why Dr. Judy "isn’t working as a lab scientist" than "the Whittemore’s defamation of her character".

Also "
Dr. Lipkin’s support" that Dr. Jamie mentions does not seem to me to be very relevant, for several reasons, one of which is that I am not aware that Dr. Lipkin has been sending out e-mails to help Dr Judy get a position  "as a lab scientist" - that is, apart from his employing her briefly to help do his investigation of the XMRV-hypothesis, which terminated it as a hypothesis, also according to Dr. Judy.

Next paragraph:

And still the WPI asks for money from the community? For what? They have not published one paper in the year and a half since Dr. Mikovits was fired. Instead they have spent a bunch of money to ensure she is completely stopped. What kind of people would do that? Why wouldn’t they want her to be able to work? To live her life? She gave them five years, trying to help their daughter, but wanted to follow the truth instead of the money, so they did everything they could to destroy her. What’s in those notebooks that they are so concerned about? There is no intellectual property, since XMRV is not a human retrovirus, but a lab contaminant, so there must be something incriminating, something that leaves them vulnerable. But they won. They have the notebooks.

More PR prose. To answer the first question: Clearly, "the WPI asks for money" to keep the WPI going. This one may have little sympathy for - I am out of sympathy with the WPI after reading through a strong dose of their PR prose, as outlined in my me+ME: WPI annual report w/Sam Shad PR & RR PR + ERV - but they are entitled to ask "for money".

What is true (to the best of my knowledge) is that the people working at tbe WPI "
have not published one paper in the year and a half since Dr. Mikovits was fired" - but then they may say that this is so, at least in part, because they lack part of the lab books.

If Dr Jamie then asks, in a verbal pose of outrage "
Instead they have spent a bunch of money to ensure she is completely stopped. What kind of people would do that?" I suppose the WPI's answer is along the lines: It is because Dr Judy has not returned all the lab books.

As I have said above, I do not know the truth about the lab books, but I am not going to believe either party on its mere say so. Also, that the dear Dr Judy
"
gave them five years, trying to help their daughter" forgets to mention that the dear Dr did not work without pay, which wasn't peanuts either.

Next, that Dr Judy "
wanted to follow the truth instead of the money, so they did everything they could to destroy her", in Dr Jamie's rhetorical version, forgets to mention that until briefly before Dr Judy's dismissal in late September 2011, Dr Judy and Mrs Whittemore seemed to be on the best of terms, and appeared regularly in front of Sam Shad's cameras, that were not what they seemed to be, in order to smile at the patients, and tell them about the latest bit of heroics wrought at the WPI, directed by Mrs Whittemore, with Dr Judy as chief researcher.

Also, Dr Jamie does not mention that "
did everything they could to destroy her" happened in court, and involved legal arguments, and not illegal violence. I am not saying this was fair, for I do not know: I am saying Dr Jamie's "everything" is an exaggeration.

Then there is again a rhetorical question: "
What’s in those notebooks that they are so concerned about?" Why can't Dr Judy say so? Part of "those notebooks" were found in Dr Judy's house, Ive understood. So why does Dr. Jamie ask this rhetorical question? To suggest that Dr Judy cannot know what was in "those notebooks" that may have been found in her own house (that she now lost, due to her bankruptcy)?

Next, as if in answer to the rhetorical question, there is this curious bit: "
There is no intellectual property, since XMRV is not a human retrovirus, but a lab contaminant" - whiich is exactly what I have suggested quite a few moons ago is in Dr. Judy's interest to maintain, and indeed to agree with Dr Lipkin, namely to nullify and void any claim for damages on the part of the WPI against her, namely for misappropriating "those notebooks" with information about research worth a great amount of money.

This is what I argued quite a few months ago: If the 2009 Science paper produced by Lombardi, Mikovits, Ruscetti etc. was in fact based on contamination, the lab notebooks of the WPI cannot be worth much.

Dr Jamie follows this up with what seems like a twisted claim: "
so there must be something incriminating, something that leaves them vulnerable", namely "since XMRV is not a human retrovirus, but a lab contaminant".  The twist is this:  What if, as I also have repeatedly argued, already in 2011, Dr Judy had "those notebooks" removed by Max Pfost because there was evidence on them that she did things she ought not to have done? See my text of October 8, 2011, on the subject of 5AZA.

Finally, Dr Jamie tops this with "
But they won. They have the notebooks", "they" being the WPI or the Whittemores. To the best of my knowledge, "they" claim that Dr Judy has not returned all the notebooks.

Next paragraph, more PR-prose:
From a big picture perspective, as affects the patient community, the whole misadventure was so wrong, it’s hard to count the ways. We were robbed, on many levels. From a personal perspective, it is still incomprehensible to me that the promise we felt, back when Dr. Judy was being promoted like a rock star, has turned to dust.
I agree much was  "wrong" and there was a "misadventure" - but what if  "the whole misadventure" was that Dr Mikovits and Dr Ruscetti had hoped to make a lot of money from the patents they took on the research tools for XMRV, after misleading the editors and reviewers of Science by treating their data with 5AZA?

I do not know, and I am not a biochemist, but this is not something I made up: It was also mentioned on Phoenix Rising in 2011, and here is the link:
Next, I find it a bit bitter and odd to read "We were robbed, on many levels": After the fact, there is a huge opportunity cost: The money and energy spent on a lab contaminant could have been spend on a lot more deserving projects that might have benefitted patients with ME/CFS.

Also, however sorry Dr Jamie may try to make me feel for Dr Judy, and speaking "
From a personal perspective", I recall that I have been ill since 1.1.1979, and have been poor and miserable since then, while Dr Judy as recent as a few days ago, while not being much younger than I am, possessed several "homes" and still is physically healthy.

Also, it was wrong but understandable that naive patients "
promoted " "Dr. Judy" "like a rock star" and it was plain wrong that "Dr. Judy" let herself be "promoted like a rock star". And for me it is quite "comprehensible" why things "turned to dust": The "science" that Dr Judy promoted was not science but contamination, and she made several major mistakes, whether on purpose or by acccident.

Next, we are being prepared for more PR, by the saintly Dr Judy herself:
However, she has told me repeatedly that they have taken her money, but they can never take the most important things from her. From an email last night, after reading my draft for this blog, copied here with permission:
She still has her health, and a need for money, I understand:

The copies of my notebooks prove my total innocence. I did my job and beyond…their actions prevented the truth and prevented me from getting work, and not only me, my students as well…but as you say it robbed the scientific and patient communities of data paid for by federal dollars and donations to a “non-profit” institution. I could NOT LIE or ALLOW the truth to remain hidden or support those who would not tell the truth in order to take advantage of a vulnerable patient population.

Who does she think she is taking in? Well... there are lots of naive patients living in pain and misery, and "The copies of my notebooks" are precisely what is at issue. One cannot rationally believe Dr Judy Mikovits on this: She claims the Whittemores have them, and the Whittemores, more credibly, claim she has them or know what happened to them.

And I, for one, certainly do not believe Dr Judy Mikovits "could NOT LIE or ALLOW the truth to remain hidden", and I get sick from being manipulated by people who are not ill, and may be frauds, with talk about "a vulnerable patient population".

The least Dr Judy Mikovits did wrong was help waste several millions and two years and lots of time of many biochemists and medical doctors on what turned out to be seriously flawed research.

Their intellectual property was unraveling when it was found that XMRV was a Silverman lab contaminant..what they are and were afraid of is that they will be held liable for the fraudulent testing.. Lombardi and the Whittemores lied for 3 years and they all had a financial interest in VIPDx. There simply cannot be intellectual property or diagnostic testing for a virus that does not exist in any natural organism!!!

It was very convenient for Dr. Judy that the "intellectual property was unraveling" when it did, for that made it quite unlikely that the Whittemores could charhe the saintly Dr Judy for misappropriating lab books worth many tens of millions of dollars.

Also, if the Whittemores are "liable for the fraudulent testing" then so is the saintly Dr Judy, especially if she claimes that "There simply cannot be intellectual property or diagnostic testing for a virus that does not exist in any natural organism!!!": So Dr Judy Mikovits knew this all the time?! Of all the people who should and could know she and Ruscetti are the best qualified, after all. And so again:

Next, we get a ranting and raving load of bullshit: 

From my personal perspective it is incomprehensible, that in the United States of America, all of my constitutional rights can be denied in order to cover up the truth

Isn't this contempt of court? In any case, and wholly apart from that: There is a whole lot that is wrong, unjust and immoral in the US practice of the law, from private prisons to people locked up for decades for the crime of possessing a little marihuana, so if dr. Judy Mikovits gets abused, this may be part of the system and nothing personal.

But meanwhile I fear it was deserved.

 …They do not want me to work because they are that vindictive. They know I live for my work in cancer and neuroimmune disease and for patients everywhere. They know my work is my life ..they thought they could take my integrity..but you know what ..THEY FAILED! 

Really now? If you live for your work than why did you spend so much time on mailing with patients? Con men and con women mail with patients, talk with patients, praise patients, solicit patients, are always wiling to declare how much they love and admire patients, and ask money and support from patients. Real scientists do the real scientific work to help patients - and have no time to mail with them.

 Because Lipkin applauded my integrity and succeeded at showing the world what Silverman and Lombardi did to this patient population..

Saintly Dr Judy: Dr Lipkin wanted you to take part in the research he led that finally made you admit you had been touting a lab contaminant for over two years as if it were the cause of ME/CFS and many more diseases. Here is Wikipedia again, with my stresses added:

Mikovits has garnered criticism from some scientists for stating that XMRV is a communicable infection which is "clearly circulating through the population as is our fear and your fear". Virologist Vincent Racaniello responded to that, saying that it "is just inciting fear." Mikovits showed slides at a conference which linked XMRV to Parkinson's disease, autism and multiple sclerosis. However, there is no published evidence that XMRV is associated with these diseases.

Dr Lipkin may have believed that you had "integrity", but now you seem to be throwing Dr. Silverman under the bus for what you did.

THEY are the COWARDS and I have my honor and my integrity 

Dr Silverman is a "COWARD"?! For why? Because you have no responsibility for your mistakes?! See: Why does 5AZA matter? [1]

but most importantly of all, I have the support and confidence of the patient population, not just the CFS patients but the cancer, Chronic Lyme, Autism, MS ALS, Parkinson’s.. that is, ALL the patients to whom I have dedicated my life.

I recommend you go see a medical doctor, and not Dr Jamie. All you ever did for "the CFS patients" and indeed possibly also "the cancer, Chronic Lyme, Autism, MS ALS, Parkinson’s" is to incredibly confuse the issues with flawed science that may well have been falsified on purpose, to cash in on the patents you and Ruscetti took. See: Why does 5AZA matter? [1]

You see, my life was never about money and never will be. 

You protest too much.

I am still working as a volunteer, I enjoyed coffee with two CFS patients yesterday and a cancer patient this morning, before I went with her to an appointment. 

There always will be naive people willing to be taken in. And as a matter of fact, you have no chance of ever getting a real job in real science.

I have never stopped being a patient advocate and will continue to be one in 2013.

Thank you kindly, but I very much rather had you do your Good Works not on ill and defenseless and scientifically ignorant people whose pain and misery make them bellieve far more than they should.

As one of my courageous friends with aggressive Parkinson’ s wrote in a Xmas card: “2012 was a year of change and loss,  faith..we all needed tremendous faith to survive 2012!! 2013 will be a year of optimism, opportunity and HOPE”.

This is sick and sickening PR-talk by what I have come to think of as a fraud. See [1] below, that ended thus, on October 6 2011:
Once a scientist has shown that they are willing to intentionally say something not true about their methods or their data, they cease to be scientists. They will no longer be trusted in science. It's a career-ender, and it makes all their work suspect, and it means that everyone who was relying on their work for their own research and research decisions cant trust the things they were relying on.

Mikowits misled us about their methods and their results, and in the case of Figure 2C and the Ottowa slide, have said they did so.

And THAT is why there is so much outrage from scientists about this.


Note

[1] I quote the first entry from Why does 5AZA matter? dated October 6, 2011: What Judy Mikovits Ph.D. should do is to refute the following, and not to patients who are ignorant of biochemistry and retrovirology, but to persons qualified in biochemistry and retrovirology. Note there is considerably more on the same page under the last link:
Ruscetti has admitted that the two positive lanes in Figure 2c from the Science paper, which contained activated PBMC from CFS patients, were treated with 5AZA. He mentioned only the two CFS patient lanes, and did not say the controls were also treated. This was not mentioned in the paper. Ruscetti says it was a trivial omission, not necessary to the paper.

He is wrong, and he must know better. This is why. I'm going to start from the basics, so the story is complete.

When a retrovirus infects an animal - lets say, a human - it sometimes integrates a viral DNA sequence into the DNA of infected cells. This is a 'provirus.' The integrated provirus can ay silent, or it can express viral proteins and RNA and make new virus.

One mechanism the cell uses to try to turn the provirus off, is to methylate it - add methyl groups to the DNA. Methylation turns off expression of genes.

Sometimes a cell infected with a 'provirus' can be passed on through sperm or egg to the person's children. If that happens, the provirus sequence has now become part of the human Genome, part of our genetic heritage.

It turns out that a very large part of our human DNA consist of ancient retrovirus insertions, often from millions of years ago or more. They have mutated enough over many generation that they don't make functional virus. They are silenced by methylation. These are called endogenous retroviruses - retrovirus sequences that are not infectious and have become part of our DNA. They are called ERV's for short - and yes, this is where Abbie Smith took the name of her blog. One of her core scientific interests is endogenous retroviruses, which is one reason she is interested in this story.

ERVs are not infectious - they can't make functional virus - but many of them are capable of making virus protein if they are turned on. Including among other things, gag protein.

Some of these endogenous retroviruses are gamma-retroviruses.

So - short version - our DNA is packed with ERV genes that can make retrovirus proteins if they get turned on. They are turned off by methylation.

---------------

If a gene - say, an ERV or an integrated provirus from a new viral infection - is turned of my methylation it can be turned back on by demethylation.

In her Ottowa presentation where JM showed 5AZA treatment of PBMCs, this is what she was talking about. She was claiming that after the initial infection, HGRVs integrate into the DNA of infected cells, and go silent She claimed that treatment with 5AZA reactivates them by demethylating them, they produce new virus, and then she can detect the virus. That's a reasonable hypothesis.

----------------

But here's the problem Treating the PBMCs with a demethylating agent - 5AZA - can also reactivate all those silent endogenous retroviruses, which are a part of our DNA, of everyone's DNA. Take perfectly healthy cells, demethylate them, and they can start to make gag protein FROM THEIR OWN DNA. 5AZA can cause gag to be made from either ERVs or from infectious viruses.

In the Ottowa presentation, JM presented a gel from an experiment that Ruscetti did. She claimed the experiment showed that there were silenced HGRVs in infected cells, and that demethylation could make them start producing virus again. Assuming the labels on the slide she presented actually represent what was on the gel (they don't, she made that up too, but that's another story) they show patient samples that were treated with 5AZA, compared to controls that were not treated with 5AZA.

The problem is, she compared CFS-patient, 5AZA treated cells, with healthy-control cells that wereNTo treated with 5AZA, and showed that there was gag protein in the CFS samples. But from that experiment, there is no way to know if she is detecting gag from recent provirus from a fresh HGRV infection, or gag from endogenous gamma-retrovirus sequences of the human DNA.

That is, treating the patient cells with 5AZA is enough to make it produce gag from human DNA - even if it does not have a virus infection.

----------

Back to Figure 2c. Ruscetti has now admitted that the patient samples in Figure 2C were treated with 5AZA. That means that the gag they detected, could simply be from endogenous retrovirus sequences, including possible gamma-retrovirus - and have nothing to do with a virus infection.

This is really basic virology. I know it as an out-of-date evolutionary geneticist, because the endogenous retrovirus story has been a fundamental story in evolution. Its been a fundamental story in virology,in cell biology, in genetics. Ruscetti and Mikowits had to of known this.

Knowing that the patient samples in Figure 2c were treated with 5AZA, there is no way to tell if they are detecting XMRV, some other infections HGRV - or gag from ERVs. Just as bad, even if they are detecting an infectious HGRV, that gets turned on by 5AZA - there is no way to know if that virus might be in the controls as well, because they did not treat the controls with 5AZA.

The 5AZA treatment was a major factor in that experiment. There is NO WAY that it was a meaningless trivial detail. Ruscetti and Mikowits had to of known it. When Ruscetti said it didn't matter, every scientist I know of who has followed this, was surprised or laughed out loud.

What Figure 2C says, knowing what they did with 5AZA, is no more than - 'hey, we can find gag protein by doing things that are known to cause gag protein from healthy cells.'

This is, at best, scientific misconduct in misrepresenting the experiment they did, and what was on Figure 2c. They may not be simply making up data - maybe they do have gels showing gag in patient samples and not in controls, without 5AZA treatment, as they claim in the Science paper. But we don't know -we can't know without someone going through their lab notebooks and results - because they didn't honestly and thoroughly tell us what they did.

And at least some of what they did tell us of what they did, was not actually what they did -and they knew it when they told us.

They knew that Figure 2C had 5AZA treated patient samples, and didn't tell us. They knew that lanes labeled claimed to be from patient samples in the Ottowa presentation, were actually healthy controls.

Once a scientist has shown that they are willing to intentionally say something not true about their methods or their data, they cease to be scientists. They will no longer be trusted in science. It's a career-ender, and it makes all their work suspect, and it means that everyone who was relying on their work for their own research and research decisions cant trust the things they were relying on.

Mikowits misled us about their methods and their results, and in the case of Figure 2C and the Ottowa slide, have said they did so.

And THAT is why there is so much outrage from scientists about this.


About ME/CFS
(that I prefer to call M.E.: The "/CFS" is added to facilitate search machines) which is a disease I have since 1.1.1979:
1. Anthony Komarof

Ten discoveries about the biology of CFS(pdf)

2. Malcolm Hooper THE MENTAL HEALTH MOVEMENT:  
PERSECUTION OF PATIENTS?
3. Hillary Johnson

The Why  (currently not available)

4. Consensus (many M.D.s) Canadian Consensus Government Report on ME (pdf - version 2003)
5. Consensus (many M.D.s) Canadian Consensus Government Report on ME (pdf - version 2011)
6. Eleanor Stein

Clinical Guidelines for Psychiatrists (pdf)

7. William Clifford The Ethics of Belief
8. Malcolm Hooper Magical Medicine (pdf)
9.
Maarten Maartensz
Resources about ME/CFS
(more resources, by many)



       home - index - summaries - mail