Yesterday made clear that it is going to be a circus. All that’s needed is cotton candy and clowns. Annette Whittemore is still selling fairy dust and the fate of humanity depends on whether Judy Mikovits was perfect or not. It’s more exciting than a high wire act. The CAA, the folks at the CDC, most of the scientific community are all gleeful. They wanted to turn the iconoclast into Joan of Arc. Since she isn’t a saint, the Salem Witch Trials is a better metaphor. If the scientific community had actually been impartial, they wouldn’t be so happy. They say it needs to be about the science, not the scientist, but in fact, it was, and is, very personal, not about the science at all.
I am not a lab scientist and cannot evaluate the slides written about in yesterday’s Chicago Tribune. I refuse to read ERV’s blog on general principles. Trine Tsouderos seems to be slumming for sources. And Annette Whittemore, who has no viable option but to blame Dr. Mikovits for everything that ever happened at the WPI, has turned to the journalist with an agenda. The debunker. Necessity makes strange bedfellows. Even discounting my own experience of Dr. Mikovits, which makes fraud as an explanation for an error extremely unlikely, it makes no sense that she would intentionally subject herself to the possibility of that fraud being detected by using the same slide again on purpose. The only person who has a reason right now to characterize a mistake, if one was made, as fraud, is the person trying to save the WPI. And maybe ERV and her ilk. Now all that money that was just raised at Vivant and the WPI annual fund raiser can be spent on lawyers to go after Dr. Mikovits, as they try to continue to lure patients down the yellow brick road. The baby in this divorce? The grants. An institute without a chief scientist and a scientist without a lab.
What’s left? A lab running a bunch of tests that I can order from Quest and LabCorp, for which insurance will pay. A CEO who, when I was there, had six people working for her, including a personal assistant, while Dr. Mikovits had two, and then one. A doctor working for himself. An awful lot of empty space. Less than no respect at the medical school. A post doc. A paper which looks like, one way or another, it will be completely discredited soon with everybody calling everybody a liar. Some GenBank sequences and related patents, which I know very little about, but which I imagine are enough to muddy the waters for everyone else, and therefore prevent work from seeing the light of day. Why would anyone want to get into this mess now? My fear is that the WPI will try to exist without substance to preserve their intellectual property. At this point, the counter on the top of the side bar is counting more lost time.
All this in the context of: I still think a gamma retroviral hypothesis is the best one we have.
Today’s song: Stuck In The Middle With You
>@Annette post a few comments up. I do not know if it is cynicism or what but your post just came across as fake. In one sentence you are saying how great Mikovits is and in another you are throwing her under the bus. Just say it like it is already. I feel like I am listening to a politician reading your statement not something that is truly from the heart. If she did something wrong then do not say how great she is. If it was unrecognizable personal issues then do not insinuate that she did something horrible. It all just seems disingenuous.
I mean this with the least disrespect as possible even though it comes across very negative. WPI handling of XMRV has been horrendous but at this point it is not much surprise considering the poor handling of this situation too. WPI has made statements overstepping the science from as early as a few days after the science paper. Such as the links to autism and possibility of presence of XMRV in breast milk, even if that was possible it should have not been said. Then as the negative papers started coming out there were personal attacks on scientists that disagreed with your findings. Instead of reaching out to those with different findings and working together to figure out what went wrong. Then even later on the WPI keep firing up the CFS community with hinting to conspiracy theories as to why others have not found it.
Enough is enough, you have to set the record straight and lay it all out without beating around the bush if you want to have any change of ever being respected in the scientific community in the future.
This is all coming from a CFS patient who paid for your VIPdx test and donated to your institute.
>"fearmongering" – v. the act of inciting, esp. for direct or indirect personal or corporate gain, apprehension or panic amongst a population that results in the off-label consumption of prescription antiretroviral drugs with serious side effects, distrust of blood banks and further restrictions on blood donations, large expenditures of public funds, endangerment of public health through fear of life-saving vaccine interventions, and rumours of a catastrophic worldwide epidemic- all over a virus that seems not to exist as a human pathogen. That's my own jury rigged definition, but I think it works.
"Or by another blogger who's called Dr. Mikovits a c*nt." There is an obsession with this. Why does that offend you more than the subterfuge with the figures? More than the maligning of other researchers in the press because they didn't find what JM wanted (she kept claiming they didn't properly follow her protocol when we now know is attributable to the fact that it was not published)? – don't you get it? Do you not understand how utterly repugnant that is?
I feel badly for patients who have been let down hard. I hope that they can sleep on this, take some time to reevaluate with objectivity, and face it squarely on their own time. This avoidance of what is plainly obvious to everyone is undignified.
Not Jason
>Please sign the group card for Dr. Judy Mikovits: http://www.groupcard.com/c/8487eFZ-mhd 147 signatures now! Ends Wed, Oct 5 @ 3pm Eastern. If you have not yet signed, please sign now. And share this link so everyone signs who wants to!
>I agree with a previous poster, speaking to Annette Whittemore: "We really need something more than PR boilerplate as an explanation for why this happened and why it had to happen in such a sudden, abrupt, and insensitive way."
Tell us the truth, Annette. That is what is necessary here.
Patricia Carter
>There should have been no debate regarding a slide from a conference when it duplicates another gel replicating that assay. What makes things less clear is why Abbie Smith published images not pulled from the genuine published material? Miss Smith has yet to divulge her reasons.
>It happened because Mikovits did not reveal all their testing methods and the fact that their original study was NOT double blinded, or even blinded.
Read the science magazine article, or better yet, read the discussion of the scientific misconduct at this link:
http://forums.phoenixrising.me/showthread.php?14009-Ruscetti-Confirms-ERV-s-Blog-about-the-WB-Image&highlight=Azacytidine
Very sad, but…I'm guessingi that's why she was fired. Don't expect Ms. Whittemore to spell it out. Doing so is like asking for the truth from any corporation or politician or lawyer…
Time to move on and use treatments, protocols that help.
>You typed the words right outta my fingers, WD.
Annette, I'm not interested in this sad "girlfriends break-up story" or your oh so sweet (and so very late) words about the wonderfulness of Judy.
What you owe your donors, especially the impoverished patients, is an accounting of where their pennies have been going up to now(Judy had only ONE assistant??? for how long???), and how you will go about refunding their donations now that your research program is gutted.
Second, what you owe your VIP Dx customers is the truth about the commercial tests. They can't sue you — the paperwork very clearly said "experimental" all over it. But your remaining crack research team (just who is that exactly?) needs to either publish data demonstrating the validity of the testing or you need to come clean and tell those who tested "positive" that their results are uninterpretable (at the least) and more likely simply meaningless.
The above are the actions necessary to avoid continuing the "anarchy and injustice" you're responsible for creating here.
As "nice" as you are and have been to the patients, Annette, we don't need further "nice." We need and deserve accountability and most especially the truth.
Val
>@Robin
It was blinded and they did reveal everything. Annette Whittemore's is not a scientist.
Sean
>I'm having a lot of difficulty with the "Annette" letter. Somehow, it just seems bizarre that a retrovirologist gets fired for some kind of Walmart-workplace insubordination code of conduct issue. This is not ringing true….or it's highly jacked up. Come on, WPI, let's remember that it's the patients who've supported you, and it's the patients that are on the short end of the stick, here. You owe us better than this.
>Abbie Smiths accusation of fraud agaist Frank Ruscetti and Judy Mikovits have been priven untrue. People are waiting for Abbie apologise?
>My energies are best spent lobbying government for fair funding.
Robert Miller's youtube testimony to CFSAC comes up with $150 million per year compared to comparable diseases.
I just heard autism got a BILLION dollars in funding back in 2008. There is no shortage of science going on there, now. They really know how to lobby.
Best to both WPI and Dr. Mikovits.
Wessely and the anti-CFS forces would fall into the Niagara when we get our funding in place.
>It’s hard to imagine that the WPI would have done this unless there was substantial evidence that Judy Mikovits had done something severely wrong in terms of fraudulent scientific behavior.
Perhaps it's just what's been released in the media so far (which is extremely serious in itself); perhaps there's even more to it. But from the letter, the firing has nothing to do with insubordination and everything to do with malfeasance:
"She knows that she, like everyone else at the institute, has to abide by a common set of rules that apply to one's conduct. Without those rules there would be anarchy and injustice in the work place. Judy chose a course of action which I had to respond to. I am deeply disappointed by her choices."
There is enough evidence of various wrongdoing so far that the idea that there may be much more to come out is not inconceivable. If that's the case, then of course the Whittemores can't say anything more than they already have. And even if in the future everyone agrees that they were right to make this decision, it has to be extremely painful for them to have the community turn on them at this moment.
Insofar as Judy Mikovits committed fraud in these studies, she has acted in a way to hurt patients profoundly. It doesn't matter how empathetic she has been to us. Patients have been harmed by many people over the years — Bill Reeves, Stephen Straus, Simon Wessely — but this will have been as bad for us as anything that anyone else ever has done.
Based on what is known so far, at worst the Whittemores have put huge amounts of money into trying to figure out this disease (apparently almost bankrupting themselves in the process) and have made a bunch of bad managerial decisions. Even if what has been publicly reported is all the wrongdoing that has occurred, that will have been enough to have justified their decision to sever the relationship. And — reading between the lines in Annette Whittemore's letter — it seems that there very well may be more to come.
This is an utter disaster. Hopefully there now are enough new efforts — such as the ME/CFS research and treatment center (not part of the Chronic Fatigue Initiative) at Mt. Sinai Medical Center that Derek Enlander announced yesterday — and enough traction that the disease will continue to get the attention and research that it deserves and that more patients will have access to treatment. It would be unfortunate if it lapsed into obscurity (as it did between 1994 and 2007 after the de Freitas retrovirus was dismissed as being a cause). I don’t think that will happen though — especially if everyone can work in their own individual ways to keep it from happening.
There very well may be a retrovirus associated with this disease. I still think that it makes theoretical sense. Hopefully someone will find out, eventually. But throwing science out the window — which is what is going on here — is no way to go about looking for it.
This chapter in our history is over. All that’s left is cleanup.
I wish that weren’t the case.
>@Lisa
Don't make up more false accusations. Do you think Ruscetti would back Mikovits if it was her? They have been working on this research for years now, they now every detail of what is happening.
The WPI obviously were never that serious about finding the cause and dropped out of the race.
>Missing the point and lost opportunities
This quote is for Jason who says it is all about science: “I began comparing Judy Mikovits to Joan of Arc,” Coffin says. “The scientists will burn her at the stake, but her faithful following will have her canonized.”
While we are talking about burning Dr.Mikovits at the stake we should look closer. First focusing on the Western Blot slide is of importance to Jason. As a physician for 40 years I understand disease processes but don’t understand Western Blots or the critical importance of these. I have known Dr. Mikovits for almost 2 years and cannot believe that she would commit fraud. Everyone but postdocs can make mistakes. Dr. Mikovits had nothing to gain as she already knew that she would be fired, even before the Ottawa conference. She was actually fired for “insolence.” She cares about the truth and cares for our suffering.
Jason isn’t alone in missing the point of her presentation. Go back and look at the slides. Look at the graph of my data. There is no explanation for the improvement in my leukemia cell parameters other than a retrovirus responding to anti-retroviral drugs. In addition, my cytokine signature and CFS symptoms improved. Two prominent retrovirologists have tried to explain these results as “selective toxicity” which is ludicrous. At present my blood samples are being analyzed at other laboratories able to do deep sequencing and integration studies.
Let us return to the issue of wasted money. First, remember that this awful disease has disabled millions of people and cost the economy many, many billions of dollars. You are very proud that you participated in research to prove that classical XMRV does not cause CFS. We have known that since Lo and Alter and Dr. Mikovits has been saying that for about a year now. We know XMRV doesn’t cause CFS and cancer but that other retroviruses do. So what have you and other scientists accomplished by spending time (and money) trying to disprove the role of a virus that probably does not exist outside of culture lines? I share Dr. Deckoff-Jones’ frustration. What have you ever done that will lead to diagnosis and treatment of this awful disease?
Michael Snyderman, M.D.
>Thank you Dr Snyderman.
I wish I didn't now think the WPI were standing in the way of progress, but how can they not be when they have stopped Dr Mikovits from continuing her research with her materials.
>http://scienceblogs.com/erv/2011/09/xmrv_and_chronic_fatigue_syndr_29.php#comments
Someone asked what Judy did before she went to WPI. I know! She worked for a biotech company in Southern California that went bankrupt. After that she because a distributor for a vitamin company called Pharmanex in 2006. If you look at this link, you can see her pictured as a new executive.
http://www.bigplanetusa.com/library/NSE/pdf/celebrate_1005_accolades.pdf
She led a cancer support group, called herself "Dr Judy" and sold the patients vitamins that she told them would help them beat cancer. WPI hired her away from her job as a vitamin saleswoman. no joke. I bought a lot of her vitamins. She kept a nice percentage of all sales. She was very empathetic then and passionate about her views that the vitamins could provide benefits to cancer patients.
>This just seems way off. Judy was the Research Director, right? Then why was it up to Annette to tell Judy to share her work with another particular scientist? Is that micromanagement? Seems like Judy had the right to decide that it would be inappropriate to do so, under the parameters of her job description…especially if that work was part of a grant that was in her name? So who was directing research? Annette or Judy? And was firing for insubordination done with a contingency plan? Was there any thought given to what would happen to the science? Or was it a kneejerk reaction?
>@ Annette… please give Dr. Judy her notes! That is the very least you can do.
@ Val… maybe we can't sue re the VIP-DX testing, but we can sure rescind our agreement to allow our blood to be used in research, if anyone did that. I did.
>>Then why was it up to Annette to tell Judy to share her work with another particular scientist?
Maybe because there were concerns about the legitimacy of the work, and the sharing was to check it out?
Just guessing……
>Zac (Is that you, Robert Miller?) said: "Robert Miller's youtube testimony to CFSAC comes up with $150 million per year compared to comparable diseases." Please cite the source for Robert Miller's CFSAC testimony being the source of that $150 million, Zac.
>@ Anon 11:16
And maybe Dr. Judy was just trying to play by the 'rules' of the Grant. As Annette pointed out, rules are important.
Just guessing.
>Anonymous 8:04, the question is not inane. As a donor to WPI I have every right to know how my money was spent. If you have nothing to add to the discussion then shut up.
>General rule in politics and business: you really don't want to fire somebody (especially somebody that you like) with the official reason of wrongdoing unless you have absolutely no choice. It's harmful to them, and then you've got to prove it, and it creates a big scandal.
The best reason is something like differences of opinion. But then you've got to get the person to agree to leave. Incompetence works — but it would be hard to make the argument in this case.
Insubordination is down on the list of reasons that you'd like to use, but still a lot better than public accusations.
>From Anon at 11:48 –
""fearmongering" – v. the act of inciting, esp. for direct or indirect personal or corporate gain, apprehension or panic amongst a population that results in the off-label consumption of prescription antiretroviral drugs with serious side effects, distrust of blood banks and further restrictions on blood donations, large expenditures of public funds, endangerment of public health through fear of life-saving vaccine interventions, and rumours of a catastrophic worldwide epidemic- all over a virus that seems not to exist as a human pathogen. That's my own jury rigged definition, but I think it works."
This sums up my intention, Michael Allen, if you were wondering I think fearmongering is. I think this states it perfectly.
The bottom line from my scientific perspective: Lots of docs (Jamie being the biggest one) jumped the gun and suggested people start taking ARVs to combat CFS when there was absolutely NO precedent to do so. Even when the partially retracted paper did come it DID NOT prove that CFS was caused by XMRV. It merely stated that XMRV was found in these patients. NEVER was it proven that an acute XMRV infection can cause an CFS like state, nor was it shown that XMRV was there because of the underlying disease. AT BEST the data suggested that immune-comprised CFS patients may open to infection by retroviruses. And lastly, they never clearly demonstrated their studies were clear of contamination. I don't need to go into details on how that last sentence has been proven time and again.
However, what is truly SICK in my opinion is that writer of this blog continuously ignores all of this, forms her own opinions and states them as FACT. Thus, desperate CFS patients have something to hold on to and some even start taking ARVs with drastic side effects. She is skewing the CFS patient community to believe in something that is proven to be FLAT WRONG and for that her blog should be shut down.
>I've said at times that Drs. Stoye and Coffin are horse's asses. Is that >"spewing hate"?
Answer: YES. Especially when these are good researchers that have contributed decades of great science to the retrovirology field.
>The notion that the "millions" wasted on XMRV research would have been >better spent is naive.
Naive? HA! So you think spending money on something that has been disproven is better than spending it on more promising leads? Look in the mirror here dear sir.
>Fraud is to be decided by a committee of peers or in a court room. Not by >a guy with just a first name spewing charges.
This is the only point I'll give you. While you are correct and I not able (legally) to say this fraud, in my opinion it is. I've seen fraud in my career and her manipulation of figure 2C is classic. I'm not buying the whole "I forgot to put 5 azacytidine in the science paper" one bit.
And as for Michael Snyderman:
>You are very proud that you participated in research to prove that >classical XMRV does not cause CFS.
I never did any work to prove or disprove XMRV causes CFS. I'm simply commenting on what I see in the literature. Here is my research on XMRV:
http://jvi.asm.org/cgi/content/abstract/84/5/2556
I am NOT proud of the way bloggers such as Jamie can skew solid scientific data.
I'm clearly not going to convince anyone on here to move on with this. It is abundantly clear to me that Jamie has done more harm than good to a desperate patient community. I just hope that the people that do take Jamie's stance wake up and focus their energy on something else for their own good and for future CFS research.
>Look, let's not speculate and gossip so much, and turn coat so quickly.
Before becoming sick (and to the best of my ability now!) I used to have a similar "style" to Judy and JDJ: no-bullshit, straight-talking, see-through-the-lie-and-not-apologise-for-it.
This does not go over well in corporate circles, and most social ones.
I believe Annete has been doing her best to create something good, and she's doing it in the world she moves in, the broken system this kind if thing unfortunately gets built on: Politics and Social Circles.
Judy is amazing, and so is Annette. Judy is of a totally different character to Annette. None of knows who was rubbed the wrong way or scared off by Judy's totally-to-the-point style. But clearly Annette felt this style was going to cost the WPI. I get the sense she was in a socio-political bind and made her choice.
Rather than debating he-said she -aid and speculating, we really ought to be putting our energies into addressing the totally broken system of patented organisms, pharmaceutical racketry, organised crime by the insurance industry, FDA, etc. This is the core of the problem. This beast protects itself at all costs and squashes progress until it can find profit for itself and only itself.
We are focused on these tiny issues when it is THE SYSTEM THAT IS BROKEN. That is why we had De Frietas then, and Mikovits now and on and on. The system just reinforces itself with each battle. Like the Borg when they "asssimilate".
The best thing we can do is keep sticking to the truth, and try to see our way beyond this crappy system to something new. Go 99%!!
>Jason,
Have you even read my blog? And you want to "shut [it] down"??? To keep patients in the dark while the scientific community searches for "truth" in the lab for 10 years. Ha. You are a child. As my 5 year old grandson would say, it's a free country. Sheesh.
Where are all the patients who have been harmed by arv's? You want to talk about harm from prescriptions that are written for these patients every day? You scientists are practicing medicine without licenses, trying to determine any possibility for meaningful treatment for millions of patients. You are being used by the insurance companies and the people responsible for this mess. Just wait till someone in your family goes down with it, Jason, or until your kid becomes autistic after a vaccination. You can call me. Stop being so sanctimonious. Too much time in the lab. Not enough exposure to real life.
Jamie
>"I used to have a similar "style" to Judy and JDJ: no-bullshit, straight-talking, see-through-the-lie-and-not-apologise-for-it."
I think you're confusing them with Abbie Smith.
MattK
>"Where are all the patients who have been harmed by arv's? You want to talk about harm from prescriptions that are written for these patients every day? You scientists are practicing medicine without licenses, trying to determine any possibility for meaningful treatment for millions of patients. You are being used by the insurance companies and the people responsible for this mess. Just wait till someone in your family goes down with it, Jason, or until your kid becomes autistic after a vaccination. You can call me. Stop being so sanctimonious. Too much time in the lab. Not enough exposure to real life."
Thank you for making my point of how nuts you sound.
>@Jason and @Not Jason
A change of subject. What I'd like to see from you two if you care so much about the suffering of CFS patients, are proposals for research you guys would like to do. Show me and the million other CFS patients in the US, what your ideas and vision are for where productive CFS research can take us towards understanding the cause (s) and possible treatments.
Start your own blogs charting the future of CFS research.
Or, as Sarah Palin would say, "Man up"
Jason, you call me out by name, but neither you or Not Jason will sign your real and full names to your opinions.
michael allen
>Gerwyn wanted me to post:
He totally supports Dr. Judy Mikovits.
He also agrees with Patricia Carter's statement:
"Tell us the truth, Annette. That is what is necessary here." Patricia Carter
~ JT
>Love the "Man up" challenge!
>"Where are all the patients who have been harmed by arv's?"
Well, here's a year and a half's worth of misery and failure to get you started…
http://forums.phoenixrising.me/showthread.php?5270-Antiretroviral-Trial
>"I think you're confusing them with Abbie Smith.
MattK"
Um. No.
When I said straight talking etc I was not referring to slanderous name-calling, profanity, and unsubstantiated accusations of fraud. I did not mean condescending, belittling, and vengefulness.
On this I am very clear, thank you.
>"Additionally, to those of us devoted to the WPI…"
That says it all.
>I love straight shooters (since I am one myself). Unfortunately, we sometimes shoot ourselves in the foot. If we make a mistake, we own up to them. That is what Judy Mikovits and Frank Ruscetti did.
With all the stuff going on, do you honestly think Dr. Judy was going to address some stupid blog by a grad student desperate for attention? IMHO, she is focused where she needs to be.
While others are having fun trying to poke holes in someone else's research (which is to be expected anyways since that is how science progresses), there is still substantial research going on.
XMRV is still an infectious virus that can contaminate cell lines and most likely humans. Other viruses have already been detected. I'm not taking my eyes off the prize. Others won't be either.
Go Judy Mikovits, Frank Ruscetti, and other scientists dedicated to the truth.
>Wow thru all of this I just realized I have over 15,000 e-mails. I like to save them. I have not deleted one. Can you believe that!
>LOL – where, even, are all the "1000s" of Me patients who are trying ARVs?
>There is no such thing as the VP-62 sequence in nature. The viruses detected by Dr. Frank Ruscetti and Dr. Judy Mikovits have nothing to do with VP-62.
Silverman screwed up the sequencing.
They may have a xenotropic host range or they may not. They do however produce the cytokine and chemokine signatures of neuroinflammatory disease in infected people.
Gerwyn
>Anon 2:20 PM:
Although I do not have the time to read through 1000 messages, nor do I read the forums, I suspect most of this thread is about one patient, who overall, I believe feels she has benefitted from arv's, but it is difficult, because she changes her mind moment to moment. I think even she would agree. She wrote profusely on the forums before she ever took an arv, and it gave her a ready audience. Btw, her doctor is an ID doc.
I maintain a confidential elist for people taking arv's. All together, I know of about 50 people, first and second hand, who have tried arv's in various combinations and for various lengths of time. With and without other interventions. I know of one person who experienced a flare of symptoms, went off the drugs and stayed worse for a prolonged period of time, but is gradually returning to baseline. 2 people had elevations in renal functions (not failure), who were properly monitored, went off or reduced dose. There were 2 people who had adverse reactions when they started the drugs, which were minor and self-limited; they both were able to continue the drugs. Pretty safe uncontrolled off-label trial. Nobody collapsed and died as some predicted when I started AZT.
The number of people who feel they have been helped seems higher than placebo. Maybe 50%? Pretty good for nonspecific drugs. WE NEED CLINICAL TRIALS. THERE IS MUCH TO BE LEARNED. In the meantime, arv's remain completely legal, off-label use of existing drugs, with which we have vast experience.
Jamie
>Ditto, Jason. You are a perfect example of the disconnect between science and medicine. Stunning lack of compassion from the people who are supposed to save us. And you want to tell our doctors how to treat us? With not the first shred of understanding of the pathophysiology of the disease? Without the slightest clue as to the medical issues involved? Ha. No, thank you.
Jamie
>New Article in Nature:
http://www.nature.com/news/2011/111005/full/news.2011.574.html
>@ Anon 11:16
And maybe Dr. Judy was just trying to play by the 'rules' of the Grant. As Annette pointed out, rules are important.
Just guessing.
>???? don't know how my comment was reposted!!
re the new Nature article: Stoye would love to see Dr Judy fail….
>"Ditto, Jason. You are a perfect example of the disconnect between science and medicine. Stunning lack of compassion from the people who are supposed to save us. And you want to tell our doctors how to treat us? With not the first shred of understanding of the pathophysiology of the disease? Without the slightest clue as to the medical issues involved? Ha. No, thank you. "
The only thing I am saying is that you are WRONG about your conclusions with XMRV/HGRVs and CFS/ME.
I'm showing lots of compassion by simply calling you out on this and stating publicly to the CFS community that you have no scientific basis to draw these conclusions and to lead them in the false hope that XMRV/HGRVs cause disease. I'm sorry you don't feel that way. I have no intention of telling doctors how to their job, but medical doctors need to interpret scientific data accurately to the public. Something that you fail to do.
Honestly, it doesn't matter whether I have an understanding of the disease (I admit – I don't. I'm a retrovirologist) or the medical issues.
All I know is you are bending the truth on HGRVs and XMRV and giving false hope to a community desperate for a cure/progress.
I applaud CFS patients for what they have been through and honestly wish I could do research to help the field (my focus is now on HIV). I sincerely hope that CFS research continues in new directions despite the XMRV drama.
But I want to be absolutely clear: I do not support the false scientific claims you have made in the past on this blog and neither should your readers.
>"A change of subject." Of course. "What I'd like to see from you two if you care so much about the suffering of CFS patients, are proposals for research you guys would like to do. Show me and the million other CFS patients in the US, what your ideas and vision are for where productive CFS research can take us towards understanding the cause (s) and possible treatments." This is like one of Berny Madoff's victims demanding a comprehensive investment portfolio plan before he'll believe that all his money is gone. And no, I am not a CFS patient, researcher, or activist – and I have no intention of becoming one (although I suppose the first is not up to me). "Jason, you call me out by name, but neither you or Not Jason will sign your real and full names to your opinions. " I certainly won't. I will point out that Jason gave you his first name and a link to one of his publications, not sure what else you need. In fact, why do you need it?
JDM MD: "Stunning lack of compassion from the people who are supposed to save us." I'm not sure if you're the best judge on the appropriate balance of compassion and objectivity, given the current situation.
"To keep patients in the dark while the scientific community searches for "truth" in the lab for 10 years." This is is incredibly ironic. Abbie is the one who has been telling the truth. We KNOW now that Mirkovits was not. Open your eyes! How can you claim truth for Mirkovits given what we now know? How can you claim directness, forthrightness, and integrity for the side that committed unforgiveable scientific sins? Judy was nice to you…and that is enough? Did you put her on a pedestal because she was a good friend and that's all? Or did she have another job to do? Is she supposed to be a scientist, or not? Is Abbie trying to be an advocate for you? No. She said as much. Does that make her your enemy? I would hope that more of you (some obviously already have) would reevaluate who is your friend, who is your enemy, and who is just calling it like it is.
Not Jason.
>@ michael allen and anon 3:07 PM: Very well said.
Kkrizani, I loved your comment. If you are reading, could you please email me? jdeckoffjones@gmail.com
Thanks all for participating,
Jamie
>Thank you, Jason, for the more considered response. I don't think you've really read what I've written, or you might know that my hypothesis comes from the other direction. Top down. I look at the disease and think about what could possibly cause the clinical picture. You look at a test and say, it isn't that one. Thank you. That's very helpful. So what is it? We need you to find it. Not tell us we're wrong, and crazy, because the first round of experiments got screwed up.
A few of us decided not to wait the years it would take to get a real answer about existing drugs. We knew what we were doing. Eyes wide open. The only patients who did, or are considering it, have very few viable options. Please think about what that means in real life.
I have allowed myself to have a target on my chest so that others might know the outcome of our experiment. I never said it would work or that anyone else should try it. I've repeatedly said that I could be wrong about anything. I never said I knew the "truth". The truth is that we have a terrible, incurable, nearly untreatable disease that deserves clinical trials, that are not forth-coming. This orderly progression of science that you want means some will be dead and many will be much sicker. It is a degenerative disease. It is an infectious disease, so more people will get it and go down from it while we wait.
Jason, the youngest patient I know about with CFS is 4. Not autism. CFS. 3rd generation. Help us. And don't shoot the messenger.
Would very much like to meet in the middle, if there is one,
Jamie
>How did a person called Billy on mecfsforums managed to get a hold of the gel from Lombardi that includes the label before the article was published in Science?
Has the Lombardi data now been compromised?
>So this guy Jason is now admitting that he does not know much at all about pathology/physiology of CFS/ME, but at the same time he is damn sure it is not caused by any HGRV. WOW!!!!
What the ***k!? This is like a lawyer trying to defend someone in court without even knowing what the defendant is being accused of! Not having the faintest idea of the nature of the crime committed. But he knows it is not X. X is a good, harmless person. No way X could do whatever it is you don't know happened.
This is getting amusing. Thanks for a laugh, Jason.
Comedy lover.
>Dear Jason,
The patient on the phoenixrising.me forum who posted about her ARV trial had, immediately before the Lombardi 2009 paper was published, made an appointment for an assisted suicide in Switzerland. She decided to cancel it to try ARVs, so you could say ARVs have already saved her life. In short, you have no idea what you are talking about. You even admit as such.