Time to stop feeding the beast that is intent on eating us. I believe that until some sort of money making model is invented to reap CFS/ME, our community will be the target of and subject to parties and people whose job it is to keep us divided, traumatized and so focused on that trauma that we are rendered as politically disabled as many of us are physically disabled.
Can you see how this takes us off the playing field? The one we just really stepped on with so much hope not too long ago? We finally found our voices. The thing to remember is that these are OUR voices and they weren’t given to us by research, they were inspired by research. And research/government/science/(whatever) cannot take them away unless we give them away.
Yes, there is howling pain when there is a setback. What looks like a huge crash right now may well prove to be a really big speed bump, on the order of what I once encountered while driving around in Mexico. The dreaded “tope” (pronounced toe-pay). It’s about three times the size of our American speed bumps with sharp corners. If you’re not paying attention they can be lethal to your tires. So one person was appointed to watch and would sing out “TOPE!” in order to avoid more problems than were required on this particular trip.
I vote to call these latest events a pretty big tope. Everyone had their eyes on the horizon and were speeding up. Then bang. Now we are on the other side of it, maybe sitting on the side of the road. Damage is being assessed. There are some of us in fistfights in the back seat and it’s taking all of the attention off of the road. Yes, we’re still on the road, it was just a tope.
Pay no attention to the onlookers who are trying to tell you that the damage is so terrible that they will have to help tow your car off to the repair shop, (there to “try” to repair it and possibly even causing more problems than you arrived with in order to make that tope into such a disaster that you can’t continue on your way) even though, with careful inspection, you can see that you’ll probably be okay. It’s worth getting back in the car, quelling the uproar in the back seat, turning the key and easing back onto the road and heading further towards your destination.
We still have our voices. We’re still moving forward, even if we took a bigger hit than we thought possible to sustain. There will always be outbreaks of fighting in the back seat even after periods of relative quiet and harmony. An elbow will be thrown, someone will feel crowded, someone else really enjoys a tussle. The car keeps moving. Now and then it’s time to switch drivers. Either a driver got tired or their stop came along, a different destination than the majority in the car. We just saw a designated driver pitched out, but who says there can’t be a way to circle around and pick her back up, dust her off and cheer her amazing driving skills once again?
But guess what? We patients OWN the car and we actually do have a say in where it goes and how it gets there. Every time research/government/science/(whatever) throws a wall in front of us we can go around! What will we do when it’s actually a wall and not a tope? I say this was a terrific exercise in preparedness and courage and fortitude. Our community is diverse and filled with inventive and capable people, sick or not. A great example of that was the write-in campaign that morphed into such creative forms that it was stunning. Who knew? Who knew what we could be and do until it got started? We have deep resources in the people around us who DO care. That’s a proven thing.
I don’t know about you, but I still feel excitement in the air and movement with our community and also with investigations on the part of researchers. This is so different from the 25 years of stagnation that preceded the Science paper. Like it or not, the dam was breached and here comes a flood. I do not believe it can be stopped because there is the weight of aware and passionate people pushing ahead.
Again I say that I hold with this: he of the highest light wins.
>Thank you, Kita. It is good to hear some positive words.
Patricia Carter
>Sometimes we just need to change gears and refocus. Thank you!
>"This is so different from the 25 years of stagnation that preceded the Science paper. Like it or not, the dam was breached and here comes a flood. I do not believe it can be stopped because there is the weight of aware and passionate people pushing ahead."
I agree completely. And, your analogy worked for me :o)
>Great post, Kita. Thank you.
>Thank you Kita.
We have each other and I feel that if we remember we are one big strong voice we can weather this storm.
>Dr. Judy Mikovits asked me to post this for her:
Dr. Judy Mikovits thanks patients and friends for their support. She intends to continue her research and she will not give up. She will never participate in perpetrating fraud on patients or funding organizations.
>We have to make sure the compelling human gammaretroviral hypothesis of ME/CFS causation is adequately explored; as it is doubtful that we can count on government funding on that issue (understatement), we as a patient community will have to be creative and find ways to raise money for it and to keep the research community interested. Similarly, we should take advantage of the level of patient self-education that has taken place since the publication of the Science paper to fill the gaping holes in advocacy and address the problems that have become apparent to so many more of us. The pool of potential advocates has probably never been larger.
>I think one of the things all of this has brought us is the realization that we have a lot more power than we ever knew. We, the patients, DO have a say. We have the ability to follow the science. We have the means to push for funding. We can be proactive. We have been, and we must continue to be.
>And it is impossible to put the toothpaste back into the tube.
Too many people have too much published evidence for gamma research to be swept back under the rug.
>These are nice sentiments at all, but they're really just a distraction from the issue of how Judy Mikovits screwed us all over.
Just like so many other people have screwed us over.
Harness the anger that we rightly should be feeling toward these people and direct it in the proper ways, and we might finally be getting somewhere.
>essay well done Kita
>Amen, Kita. Thanks for your positive and encouraging words! 25 years ago, we didn't have the internet and social networking, either! There is no way anyone can shut us up now.
>Anonymous wrote;
"These are nice sentiments at all, but they're really just a distraction from the issue of how Judy Mikovits screwed us all over."
Can anyone tell me who this particular "anonymous" is? I have question for you.
Also, I would like a simple explanation of how JM "screwed us over".
Are we talking about a supposed fake slide used at the Ottawa conference? Was that slide a mistake, like she forgot to put in the correct slide? Was it a deliberate lie? If so wouldn't you expect her "lie" to be smarter than that?
Are we talking about something she did in her lab tests that she did not make public?
On that issue, did she not offer to share her methods of XMRV detection with any and all and most if not all didn't bother to ask her for her procedure? So, please explain to me what she hid.
If you, anonymous, can't clarify your point, then perhaps give a link to someone who has explained how she cheated all of us.
>Kita, DzD and Khaly, I totally agree!
>Thanks for the breath of fresh air after this Week of Crazy.
I agree, we are a strong voice and a potent force when united.
>Aside from the fact we get orders of magnitude less research funding than other less common and less disabling diseases there is a polical angle.
Some scientists are decrying the personal attacks on other scientists from the ME and CFS communities. In my opinion it is not about the science at all. It is about the politics.
Every figure that is being attacked has made claims in the media that appear hyperbolic or unsubstantiated. Whether they are right or not is besides the point – some will react to that. It is then political. At that point some will drag the science into the politics – I do not agree with that, the science should be assessed on its own merits – but I do understand the motivation. The message is not that scientists should avoid ME or CFS research, its is that scientists should avoid the politics until they are more informed about the history and circumstances.
We have been abused, mistreated and lied to for nearly 80 years. We are a compassionate and incapacitated community – we have quietly taken lifetimes of abuse. We have been too quite, too compliant, too accomodating for way too long. It is beyond time that we became assertive (not aggressive) and acted in our own self interest. Almost nobody else is acting to assist us, its up to us.
The small number of researchers who have committed their time and reputations to aid us are very few, and I have great respect for all of them. We need to back all the research, and oppose all the negative politics, from now until such time as we have good treatments.
We are a divided and fractured community, and this is engendered by societal disinterest, misinformation, spin and disapproval. Do this to severely sick people and they are frequently demoralized and disempowerd by uncertainty. Abusing sick people and then reacting in horror when they become angry is right out of the playbook of schoolyard bullies. As patients don't be angry, be assertive. I know this is hard, I struggle with anger frequently, but anger is false power – use anger to drive advocacy, but not angry advocacy.
There is one thing most of us agree with: we need more research funding.
Many if not most of us would agree that the institutionalized abuse of ME and CFS patients has to end – although some who have been diagnosed with CFS (typically under the Oxford definition) seem to support the institutions who abuse us. My suspicion is that these are either ICF or depressed patients, and many of these do in fact benefit from biopsychosocial approaches – but they do not have the same illness as the rest of us.
Please, whoever you are who is reading this, take action even if its only an occasional email or online vote, to support the funding of the science or resist the abuse being perpetrated on our community. Please do this by targeting other's actions, rhetoric and attitudes, not the people themselves.
Bye,
Alex Young
aka alex3619
>One of the conclusions I have come to is that some do not like that we now have a voice. It seems we are expected to be quiet, not ask questions, and not come to conclusions on our (collective) own. We do now have a voice. Let's continue to use it!
>Alex, I have the greatest respect for you. Keep posting here and elsewhere.
>Thanks for the positive thoughts.
I posted this before, but I'll try again here. Any thoughts on how we can best do advocacy while waiting for the dust to settle?
When the Science article came out, suddenly I could include a call to action in my advocacy posts: donate to the Whittemore Peterson Institute! While I'm not going to assume WPI was the villain in this "divorce," I don't feel 100% comfortable asking people to donate to them right now. I don't even know what they'll be doing, going forward.
So what's the call to action now?
>Paula:
Think about the results of the recent multi-lab study.
http://www.sciencemag.org/content/early/2011/09/21/science.1213841.abstract
The study sent out three different kinds of samples for identification to nine different labs: a) CFS patients formerly identified as positive, b) negative controls, and c) positive controls (samples spiked with XMRV).
Labs were supposed to sort out which was which.
This is how the WPI did on the test.
All the other labs could reliably identify the positive controls (samples spiked with XMRV). WPI was not able to do this. (From the paper: “The WPI assays appeared less sensitive than those used by the other laboratories, based on the fact that only 3 of 5 plasma and 4 of 5 PBMC-spiked positive control replicates were scored as positive by WPI.”)
WPI was not able to distinguish patient samples from negative control samples. They called 8/15 negative controls “positive.” They called only 6/10 of their own positives (samples that they themselves had supplied) as “positive.”
In other words, it’s not just that the WPI didn’t have some kind of magic test to detect XMRV. They didn’t even have a test that was as good as what all the other labs in the study had! When XMRV was actually there, as a contaminant, they still couldn’t find it.
And their test was wholly random in terms of distinguishing the CFS vs. the control samples.
So their whole test was garbage.
People who paid for XMRV tests from WPI certainly should be angry, since their results meant nothing. But it goes beyond that.
Obviously WPI knew that they weren't accurately distinguishing CFS patients vs. controls long ago. That’s something that you verify, over and over again, when you’re running a lab like this.
Even if the results from the original Science paper were a legitimate mistake, due to random chance, they would have known a very long time ago that the findings weren't holding up, and thus that XMRV was not an actual human pathogen.
Yet they kept on going, insisting that the reason that other labs weren’t finding XMRV was because they weren’t using the WPI “secret recipe.”
The slide from the erv blog is just icing on the cake. The whole _thing_ was fraud.
This was Mikovits’ lab and her project. It was her responsibility to keep tabs on whether the tests were working. When it became clear that they weren’t working, she should have made a general public statement to that fact.
Instead, she kept insisting that the other scientists were in a conspiracy against her. And the WPI kept selling test kits to CFS sufferers in our community, who paid for them out of their own pockets.
It's unclear exactly when the Whittemores learned that the test didn’t work and that the whole thing was a fraud.
But Mikovits has known all along — either since before the Science paper was submitted (because she doctored the patient samples to make them look like they had active viruses in them) or since shortly after (when she observed that the tests weren't working).
>Re: Wildaisy /Dr. Judy Mikovits and "she will never participate in perpetrating fraud on patients"
Dr. Mikovits deliberately fudged at least one slide in her presentation to patients. She was forced to admit to deliberately creating this misleading slide after someone has pointed it out. The story she told is quite weak and leaves open considerable questions, like: why wasn't the supposedly full procedure not published in the Science paper? For me, this is lying to patients. Now to say that she will never ever perpetrate fraud on patients (cross her heart and hope to die?) either shows her Chutzpah or her delusion – my money is on the later.
>Dr Ruscetti conducted all the western blot in Lombardi et al. and he incorrectly included the wrong slide into the conference powerpoint presentation.
The use of AZA was not germane to the paper. AZA does not activate PBMCs, and the PBMCs were already activated.
Dr Frank Ruscetti and Dr Judy Mikovits have been falsely accused.
>The only grounds for the forcible retraction of Lombardi et al., is fraud. Thus Coffin and Stoye must be at least tactically be accusing Dr Ruscetti of fraud as he performed all the western blots.
Now as to the question of fraud I invite the reader to form an opinion of the data presented in Paprotka et al. The paper that claims VP62/XMRV was created when human prostate cancer cells were xenografted into mice, if the early xenografts were VP62/XMRV free and the later xenografts contained VP62/XMRV.
1) Failure to name the only assay used to screen the later xenografts. Results of which are mixed together in Fig. 2E, but are said in the paper to be a PCR assay. At CROI Pathak admitted that this was an RT-PCR assay on RNA. Instead the only 2 assays named in the paper are PCR and quantitative real-time PCR (qPCR).
2) Failure to determine if the later xenografts came from the human prostrate cancer cell line CWR22Rv1 and if they were contaminated with cells from another cell line. This is despite testing other xenografts and cells to ensure the timeline of CWR22Rv1 was available and not contaminated.
3) Failure to base the results of the study and conclusion on the only assay that had a predetermined sensitivity (1-3 copies per 100 cells). The sensitivity having been determined after this assay DID detect VP62/XMRV in the early xenografts, two strains of lab mice and derived cell lines, 22Rv1 and CWR-R1
4) Failure to realize that other regions of VP62/XMRV require much more sensitive assays than the only assay with a predetermined sensitivity, the quantitative real-time PCR.
5) Failure to predetermine the sensitivity of the PCR assay on which all the results were based. Which then at best detected 2000 copies per 100 cells in the derived cell lines, but not in the early xenografts.
6) Failure to objectively name the 1 mouse virus discovered. Instead they choose a political name and called it PreXMRV-2, despite them not knowing if it could be a descendant of VP62/XMRV or even a cousin.
7) Failure to detect PreXMRV-1 in a single source. Instead it was created from sections of unidentified virus from 3 sources and therefore does not exist.
8) Failure to screen any wild mice for VP62/XMRV or PreXMRV-2.
9) Only screening 15 lab mice for PreXMRV-2.
10) Only screening 89 lab mice for VP62/ XMRV.
11) Stating that one set of primers used for the PCR assay, on which the results and conclusions were based, could also detect PreXMRV-1, despite having never detected this hypothetical virus from a single source. That same PCR with those primers then identified positives in the early xenografts, but was claimed to be PreXMRV-1, even though that assay could detect VP62/XMRV and PreXMRV-1 had still never been shown to exist.
>Re: Anon October 8, 7:75
"But Mikovits has known all along". She could have known and she should have known – but I think she has deluded herself into ignoring the reality. All the talk about how "XMRV waxes and wanes". This reminds me of the shop clerk in the Parrot Sketch, who keeps on insisting that the dead bird is "just resting".
Whether XMRV in ME/CFS patients or the face of Jesus on a piece of bread, the human mind sometimes tends to see patterns where there aren't any…
>In the blood working group study there were several major errors made in the organisation of how it was conducted.
1) All controls were not screened by all labs.
2) Patients were taking drugs that would produce false negatives.
3) No Trizol or equivalent preservative was used on the PBMCs, which would prevent the WPI's assay from working.
4) Length of time allotted for the serology and culture assays was massively reduced, so they were again not using the WPI or NCI/Ruscetti assays.
5) Collection tubes were kept in the same lab as 22Rv1 used to spike the analytical controls.
6) Lo's team used the wrong assay from Lo et al. and instead used the one that could not detect positives.
7) None of the controls had their PBMCs screened prior to blinding, so none could have been ruled as negative.
8) The WPI was not given the opportunity to complete the culture section of the study.
9) The NCI did no PCR and as we know could not use their clinically validated serology and culture assays.
10) All other labs optimised their assays to VP62, never once showed they could detect a clinically positive sample. VP62 does not exist in nature and Lombardi et al. is now known to have discovered HGRVs. Some of those HGRVs will be found to have a xenotropic host range.
>@Tony Mach
"All the talk about how "XMRV waxes and wanes". This reminds me of the shop clerk in the Parrot Sketch, who keeps on insisting that the dead bird is "just resting"."
What do you think waxes and wanes means in the context of human gamma retroviruses? Do you have a quote, so that your error in how you have come to understand this may be pointed out to you.
>Comment for monotonous Anonymous at 9:31AM: the sacrifice of Paprothka et al. upon your altar shall not atone for the sins of Lombardi et al. Fine, strike Paprothka et al. from the record– the problems manifest in Lombardi et al. still remain.
>Egregious errors in Paprotka et al.
Failure to name the only assay used to screen the later xenografts. Results of which are mixed together in Fig. 2E, but are said in the paper to be a PCR assay. At CROI Pathak admitted that this was an RT-PCR assay on RNA. Instead the only 2 assays named in the paper are PCR and quantitative real-time PCR (qPCR).
>Paprotka et al.
2) Failure to determine if the later xenografts came from the human prostrate cancer cell line CWR22Rv1 and if they were contaminated with cells from another cell line. This is despite testing other xenografts and cells to ensure the timeline of CWR22Rv1 was available and not contaminated.
>Paprotka et al.
3) Failure to base the results of the study and conclusion on the only assay that had a predetermined sensitivity (1-3 copies per 100 cells). The sensitivity having been determined after this assay DID detect VP62/XMRV in the early xenografts, two strains of lab mice and derived cell lines, 22Rv1 and CWR-R1
>The concepts are our synthesis and you won't find a review paper (yet). The germ of the concept came from Dr. Peterson's original finding of clonal expansion of gamma delta T-cells in his patients with CFS and lymphoma. When I tried to reach him to discuss it further, he wouldn't respond. Dr.Mikovits developed the concept farther and it certainly fits the concepts in oncology that I am comfortable with. HGRVs (in my mind MLRVs) infect multiple types of cells. If the cells are pre-programmed to be cancer, the integrated virus pushes the cells further along that pathway. There is reasonable evidence that the viral proteins somehow turn on multiple bad cellular genes to do this. If the cells were previously normal the integrated viral DNA still can increase their growth potential so that one cell may have enough of an advantage that it proliferates enough to be clonal. In the case of the gamma delta T-cells, the clonal expansion is able to produce so much cytokines that the patient becomes sick and any simultaneous malignancy is further stimulated. There are probably other clonal expansions that are problematic, perhaps microglia and mesenchymal stem cells which do similar things.
Because my data is clinical it is not vulnerable to the objections that Dr.Coffin makes. The clinical data speaks for itself and should be publishable. I am hoping to generate enough interest that grants will flow and more studies will be done. Whatever credibility we can get with cancer should allow us to return to CFS. Of course bullet-proof viral data will help the world accept what is going on so I am sending my samples to a lab in Alberta and another lab in California for integration studies and deep sequencing. I hope to have positive results from these viral studies within the next month and if the viral researchers I am working allow, we will post on X Rx.
Michael Snyderman,MD
>I'm not a scientist or a patient, but I am a personal friend of Judy who knew her long before any involvement with WPI. She is still the same person I've always known – a woman with a brilliant mind and with one of the biggest hearts of anyone I have ever known. The attacks this week have been cruel and vicious and have nothing to do with Judy. Since she had dinner at my house a week ago, I have been addicted to the internet hoping that someone would help to make some sense out of this setback, BUT NOT DEFEAT!!!! Kita, you have done that! You have written one of best essays I have ever read and I thank you for being of the highest light.
>anonymous, whoever you are, here is my simple confusion. The abstract you posted the link to is this:
"Murine leukemia viruses (MLV), including xenotropic-MLV-related virus (XMRV), have been controversially linked to chronic fatigue syndrome (CFS). To explore this issue in greater depth, we compiled coded replicate samples of blood from 15 subjects previously reported to be XMRV/MLV-positive (14 with CFS) and from 15 healthy donors previously determined to be negative for the viruses. These samples were distributed in a blinded fashion to nine laboratories which performed assays designed to detect XMRV/MLV nucleic acid, virus replication, and antibody. Only two laboratories reported evidence of XMRV/MLVs; however, replicate sample results showed disagreement and reactivity was similar among CFS subjects and negative controls. These results indicate that current assays do not reproducibly detect XMRV/MLV in blood samples and that blood donor screening is not warranted."
My concern as a patient and human being is not whether WPI has a lab test that can detect XMRV. My concern is that there seem to be murine leukemia retroviruses, maybe a family of them, that have become infectious to the human race. Other labs found blood samples which were positive and had NOT BEEN SPIKED with XMRV. We know one of these MLVs can infect monkeys. Alter and Lo found a retrovirus similar to XMRV.
Judy Mikowits will have to defend her work, validate it, and, hopefully, get funding to continue it. Meanwhile, we must focus on the strong evidence that HIV is not the only retrovirus out there. Is XMRV the CAUSE of cfs? No one knows, but it would be the height of stupidity to stop studying it at this point.
>Paula – This paper does not show that. Most labs saw nothing. The two that did were already strongly suspected (known in the case of WPI) to have contamination problems. There was a whole issue of the Journal of Virology dedicated to the contamination issue – some of the commercial test kits have chunks of mouse DNA/RNA including viral. If there was a real phenomenon of human infective MLVs than the results would be reproduceable. The WPI and Lo would have found the same patients to be 'infected'. The results of one lab were different from the other lab which is exactly what one would expect if it was a contamination or other artefact.
MattK
>Testing
>Thanks, everyone, for responding! I am so grateful to Jamie for providing this space for us to speak out and gather.
Alex, what an eloquent post – you said it all so wonderfully.
To me this blog demonstrates an important distinction between agreement and alignment. You can be in alignment and disagree and continue to move forward, sometimes even speeding the process along.
Agreement so often descends to lowest common denominator because it precludes input that may vary from the agreement. Agreement swiftly becomes "us" and "other".
It's as if agreement shrinks to fit and alignment is all about inclusion and discernment.
I'm so proud to be part of the expanding conversation here. Thanks again to everyone.
/high five
>@Paula
The Lombardi group did not find VP62/XMRV. They found HGRVs through multiple methods. The amplified sequences were polytropic, the same sequences Lo et al. found. Lombardi and Lo therefore do have the same finding. Gammaretroviruses don't tend to be thought of as a single virus, they are referred to as a family because they either don't mutate or have very little sequence diversity. This is due to them not using reverse transcriptase like HIV does, but colonal expansion. Once these viruses are fully sequenced they may be complete polytropic, they may be like XMRV, part xenotropic too, they may be something else. There will be multiple versions though, so very likely they will be all of the above.
In the BWG there were 9 patients previously declared positive by the WPI, 1 was not a patient. The 5 from Lo et al. had never been tested with culture or serology and it is well known gammaretroviruses will knock out an immune response. The collection tubes were also in the same lab as the 22Rv1/XMRV, used to spike the analytical controls. The possibility for contamination of any sample cannot be missed.
To say "that current assays do not reproducibly detect XMRV/MLV in blood samples" would be correct of all gammaretroviruses, as their home is tissue not blood. They are rarely found in blood. Assays have to be very specific, but even then it is incredibly hard to detect gammaretroviriuses in blood.
>@ Paula….
"My concern as a patient and human being is not whether WPI has a lab test that can detect XMRV. My concern is that there seem to be murine leukemia retroviruses, maybe a family of them, that have become infectious to the human race."
I take your point here. However, whether or not I have an MLV, I do have a Cholesterol problem. If I go to LabCorp to test for this, then I expect the testing to be done correctly. If not, then I expect LabCorp to be accountable.
It seems that WPI wants no accountability for testing done at VIP-DX. Annette Whittemore asked that questions regarding testing done at VIP-DX be directed to Marguerite Ross. Marguerite responded to my request for a statement re validity of the VIP-DX testing from WIP or the new lab UNEVX by stating (in part), "Unevx and WPI will not issue that statement as they did not run the test."
VIP-DX is closing. Everyone can make of this what they will.
>GC, I take your point as well. I paid to get tested at VIP and was negative. I knew going into the testing that they did not have a test for the various strains of murine leukemia retroviruses that might be out there, including the one that Dr. Lo found. I paid money knowing this.
The folks that got cheated, IMO, were those who paid to get tested at the lab in SC, I forget the guy's name. He had never found any positives in anyone or anything, yet he claimed after a bunch of patients paid for his test that XMRV did not exist. That is the kind of logic that isn't logical.
We need to keep paying for research to develop accurate tests for this group of retroviruses. Then we need to pay money for research to find what diseases – cancer, cfs etc. – it may be linked to. This is very different from making jokes about Mikowitz supposedly lying, covering up facts or trying to make money on same. She and others need funding to keep working.
>Paula, his name is Brent Satterfield, and his company is Cooperative Diagnostics. http://www.codiagnostics.com/
I have never heard of Cooperative Diagnostics ever having even one positive XMRV test result, and they have now taken their test off the market.
Patricia Carter
>"This is very different from making jokes about Mikowitz supposedly lying, covering up facts or trying to make money on same. She and others need funding to keep working."
This we can agree on. FWIW.. I tested + for antibodies.
Something that is very sad to me: There are UK folks still begging for the test from VIP-DX on WPI's FB page.
This was posted recently on WPI FB Page:
"The infectious disease doctor that is on the Scientific Advisory Board is Dr.Joseph Brewer"
Brewer's take on CFS can be found here:
http://hhv6.blogspot.com/2005/07/question-for-dr-joseph-brewer.html
>I hope the community will find these comments germane. I was reading "Half the Sky" (http://www.halftheskymovement.org/) a few days ago and was struck by its poignancy. One story that is particularly relevant to CFS/ME/Just about any other cause is that of 34 Million Friends. 34 Million friends was started by two women who had one thing in common: concern for other women and families abroad. When funding was cut, they set out to bridge the $34 million that was needed to continue the program. Their strategy really hit me and becomes pertinent; 34 million friends solicited the help of people all over the world; their request…1 buck…1 dollar…that's it. We could do that! They have raised about $4 million so far. Maybe I don't have the money to fund the research WE NEED. Maybe you don't either? But, as a combined entity, WE DO!
>When you have to demonize or dismiss an ever-expanding list of former friends (scientists like Singh and doctors like Bateman and deep pockets like the Whittemores, to name just a few), in order to keep your hero on her pedestal and your sense of order in the universe, it is time to take a deep breath and a big step back, and to ask where the problem really lies. Once in a long, long time, it turns out that the isolated "hero" was right all along, and was misunderstood or willfully persecuted. But that is the rare exception, not the usual outcome. When it seems that almost everyone you interact with is a problem (or eventually becomes a problem), then 99 times out of 100, the problem is really within you. I don't know whether Mikovits is a charlatan or not, whether she is a saint or not, or whether she is somewhere in between, like most of us. But I do wish that those who don't want to "throw her under the bus" would stop throwing everyone else who has worked with her (or worked in parallel with her) under the bus. These are the people who probably have the best sense of who she is as a scientist (not just as a person), which is the pertinent point to the patient community. We are going to need all these scientists, doctors, and funders on our side for the long haul. Let's not chase them all out of town like a bunch of lunatics!
>The issue is when scientists fail to diagnostically validate their assays. People should always be given a chance, when they then don't behave as scientists and only analytically validate, they are not doing their job. No one needs to be put on a pedestal ever. Neither should the opinions of some be put on a pedestal and given equal power with scientific data.
>Paprotka et al.
4) Failure to realize that other regions of VP62/XMRV require much more sensitive assays than the only assay with a predetermined sensitivity, the quantitative real-time PCR.
>I don't think anyone could say it was inappropriate to know that the science of Frank Ruscetti and Judy Mikovits is second to none.
>And I don't think it is inappropriate to know that the WPI does not intend to stand behind the testing they did at VIP-DX.
>Paula:
The only other published study that has produced any findings of any MLV's in CFS patients was Lo Alter (PNAS 2010). That group participated in the new BWG paper (Simmons 2011) and did not find any MLV's in any of the samples (except the spiked positive controls, which — unlike the WPI — they identified correctly).
The Lombardi Mikovits 2009 Science paper has been partially retracted already. Based on everything that has happened so far, the rest will be retracted (voluntarily or forcibly) shortly.
This leaves the Lo Alter 2010 paper. Harvey Alter is a highly respected scientist with a reputation that goes far beyond CFS and MLV's (he was the main person responsible for the discovery of Hepatitis C), and he works for the NIH. Undoubtedly he is now working with the other people on his team to figure out what happened during the original experiments and to decide what to do with regard to the paper. If they conclude that it was a contamination, they will retract the paper. Scientific papers (especially in the field of retroviruses) are retracted reasonably frequently, because the experiments are difficult to do and often come up with wrong results. Retrovirologists especially seem to attach no shame to retracting published papers. What they do seem to see as shameful is not retracting papers that have turned out to have been based on mistakes (along with, of course, purposely doctoring samples to make it look like there's an active retrovirus when none exists so that you can make a lot of money selling tests to unwitting patients).
So it will be interesting to hear what the team from the Lo Alter 2010 paper has to say, when they reach some conclusions.
Apart from their paper, there is nothing whatsoever in the literature that suggests that MLV's might have any connection to CFS. Mikovits makes it seem that way, perhaps, but obviously she's very good at twisting the truth.
Of course, even if Alter and his team retract their paper, that doesn't necessarily mean that there actually is for absolute sure no connection between MLV and CFS. It just will mean that there is no evidence _whatsoever_ that there is. The theory will have reverted to the state of a hypothesis — speculation that is not grounded in any data.
Thus, searching for MLV's would be totally starting from scratch. Or much less than that, because a huge amount of money already has been spent and (insofar as Alter's group does retract) nothing has been found.
And even if someone _were_ going to look into MLV's, it's hard to imagine that anyone would think that person should be Mikovits. Her reputation amongst everyone on the planet except for a couple of the people who read this blog is fried already, meaning that the science never ever would be published or taken seriously regardless of what was found. Plus, in any case, giving money to people who already have proven themselves to be unethical (which she has by purposely misleading patients about the tests even if her behavior wasn't actively criminal in doctoring the original patient samples) tends not to be a good idea.
>That is a really good point, Agatha.
>@ Anon 6:25 I am not sure, but I think you just reinforced what Dr. JDJ posited earlier; namely, that the personal was eclipsing the scientific. And I quote you here (in reference to Dr. Mikovits): "Her reputation amongst everyone on the planet except for a couple of the people who read this blog is fried already, meaning that the science never ever would be published or taken seriously regardless of what was found."
Think about the inherent danger of that assertion. No matter what she published, it would not be taken seriously? The environment that you are describing is not one of inquiry, then. I say this merely to point out the incredibly perilous implications of such stances. I don't know Dr. Mikovits, don't need to know her, don't support her work, don't detract from her work–those things are not needed in order to understand the hazards of science turned political. Mind you, you said this. This is your statement. If you echo the sentiments of others, no wonder research is not yielding greater advances in this area. If you do nothing to stand against it, what are you standing FOR?