What Next? by Kita Rael

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.
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89 thoughts on “What Next? by Kita Rael

  1. >Kyle… I like your idea. I know I could not fund the research. Any idea on how to set it up?

  2. >What a great idea, GC! I hope you carry this idea forward.

    In the meantime, someone on mecfsforums suggested this: "If you want to donate money towards HGRV research our best option at this point is to donate to NCI but specify in note of check only for research of Frank Ruscetti."

    Patricia Carter

  3. >The International ME Association is sponsoring a petition to promote fair treatment for Dr. Judy Mikovits. This petition is designed for patients who want Dr. Mikovits to be able to continue her research into neuroimmune diseases.

    Please go here to sign:

    https://www.change.org/petitions/fairness-for-mikovits

    The text of the petition reads as follows:

    The International ME Association sponsors this Petition.

    BECAUSE we have raised funds and donated to the Whittemore Peterson Institute for two years solely or mainly due to our trust and faith in Dr. Judy Mikovits, we ask that the Whittemore Peterson Institute acknowledge the importance of our patient support by treating Dr. Judy Mikovits fairly.

    We the undersigned patients afflicted with neuroimmune diseases, along with our families, friends and caregivers, respectfully request the Whittemore Peterson Institute to:

    1. Assure that all of Dr. Mikovits’ research materials have been returned to her, and immediately return any of research materials, if any, which are still in the possession of the Whittemore Peterson Institute, or which the Whittemore Peterson Institute has forwarded to anyone else.

    2. Request the NIH to transfer to Dr. Judy Mikovits the current R01 NIH grant and any other NIH funding currently going to WPI which was awarded during Dr. Mikovits’ employment at WPI. This request is made in order to allow Dr. Mikovits to continue her HGRV research elsewhere.

    3. Assist and facilitate the transfer of documentation and patient information, along with all cell lines and other laboratory materials that pertain to the NIH R01 grant and all other grants which Dr. Judy Mikovitsis working on, in order to facilitate her continued studies in HGRV research.

    4. Take no action which would intentionally damage Dr. Judy Mikovits’ reputation or credibility.

    5. Take no legal action whatsoever against Dr. Judy Mikovits.

    6. Assist in good faith , in any way requested by Dr. Judy Mikovits, for the continuation of Dr. Mikovits’ research studies.

  4. >Mikovits has committed fraud. This does not seem to be in any sort of dispute, even amongst her followers. The only question is when the fraud started — prior to the publication of the Science paper or shortly thereafter.

    Scientists are extremely hesitant to publish papers written by people who already have committed fraud, because they fear that there is a strong chance those people will commit further fraud.

    There's not an official disbarment as there is in the legal world, because research scientists do not need licenses to practice. But the same rules apply.

    This has nothing to do with politics. It's solely related to previous unethical and illegal conduct.

  5. >"The use of AZA was not germane to the paper. AZA does not activate PBMCs, and the PBMCs were already activated."

    THEN WHY DID THEY USE IT?

  6. >Keep battling through the politics and the astroturf folks, some stirring replies here.

    Incidentally Agatha is right in so far as, we shouldn't abandon all respect for researchers.

    Very few people have the ability to exist in a Scientific atmosphere dictated by a tacit compliance. Few would risk their livelihood against such established and intelligent power and we should begin to recognise that.

    Judy Mikovits has our respect because it is patently obvious from fear based response to Lombardi et al 2009 that something came it out that does not suit a lot of people in positions of power.

    The stench of fear is more pungent than ever, the pre-scripted press, the absence of plurality, the imitations of authority from sources we have no reason to trust, the attempts to discredit the few who have the guts to speak out for us and worst of all, the arrogant – sometimes hate speech fueled value judgements.

    We have little to lose for staying the course, decades of neglect and derision thus far have hardly been appealing.

    Kyle McNease is spot on incidentally.

    -SJ

  7. >Sorry, Kyle McNease. I was confused. I hope you will follow through on your idea. I think it is a great idea!

    "GC said…

    @Patricia.. the idea belongs to Kyle McNease, but if I can help, I will."

    Patricia Carter

  8. >I refuse to take seriously attacks on Dr. Judy Mikovits or her studies, or the entire issue from anyone who is "Anonymous," and who has an incredible ax to grind.
    I have seen so many hostile comments on many topics in snail mail and online, and it's always done Anonymously. If people want to make points, let them use their names and take responsibility for their comments.
    All I know is this: We do NOT know what Judy Mikovits thinks or what happened. We do NOT know. No one can speak definitively about her intentions, which I think were good, even if there were errors made. It is not right to make definitive statements about this.
    I think that there is a basic conflict between an institution that is making money and doing research. I have read that Dr. Mikovits disagreed two years ago with WPI's company selling tests for these viruses. They disagreed about this. But WPI sought to make money.
    Now there is a big argument over who owns intellectual property rights, the company or the scientist. That is a huge issue. Often courts find for the company, which I'd disagree with, but that often happens. It may happen here.
    I think Dr. Mikovits was well-intentioned. She is a researcher who let CFIDS patients call her and she was sympathetic. Few researchers do that.
    I'm glad the International ME Association is advocating for Dr. Mikovits. Vilification and personal attacks are ridiculous, hurtful and a waste of time. Most of all, they do not help us, those who are ill.
    The only thing that helps us is scientific research with government funding and dedication to finding out what is causing this horrendous disease.
    I think Dr. Mikovits helped bring this disease out of the closet and into the public domain, interesting other researchers, doctors, etc.
    That helps.
    Now Dr. Ian Lipkin, of Columbia U., is going to investigate other possible viral cause for CFIDS under funding (private) from the Hutchinson Family Foundation, through the Chronic Fatigue Initiative, in which other researchers are participating on other areas of research.
    I have hopes in that, and also in many tests summarized in the Research 1st section of the CFIDS Association. (I'm not giving them accolades here on the XMRV controvery, just on their blog's information.)
    I'm for waiting it out, cutting down the hostility, keeping up the pressure for research and treatment on the government, and letting the science speak for itself.
    At least there is now much research going on in virology, genetics, neurology, immunology, etc., that was not going on when I got CFIDS 25 years ago. Dr. Mikovits helped, but all of us pushed this a lot. We do have power but we have to keep the pressure on — without the vitriole … political pressure, personal pressure, etc.
    I wish we could act like ACT-UP did and as strongly as they did. They got results. It made a big difference.

  9. >One other point: I often see in the New York Times stories about new cancer drugs produced by companies that claim to be the best treatment, or studies that tout particular treatments for cancer.
    Then many of these drugs or treatments don't pan out the way they should.
    However, the doctors and researchers are not vilified in the press by name.
    This happens all of the time.

  10. >One other point: I often see in the New York Times stories about new cancer drugs produced by companies that claim to be the best treatment, or studies that tout particular treatments for cancer.
    Then many of these drugs or treatments don't pan out the way they should.
    However, the doctors and researchers are not vilified in the press by name.
    This happens all of the time.

  11. >One other point here is that this vitriol and really wound-up attacks on Dr. Mikovits and the whole way some of the researchers and media has handled the XMRV controversy is not helpful to us and hurts us for another reason: At least in my case, all of this has made my CFIDS symptoms flare up and practically debilitate me all week.
    So for the sake of our health, let's tone it down, be civil, scientific and objective.

  12. >One other point here is that this vitriol and really wound-up attacks on Dr. Mikovits and the whole way some of the researchers and media has handled the XMRV controversy is not helpful to us and hurts us for another reason: At least in my case, all of this has made my CFIDS symptoms flare up and practically debilitate me all week.
    So for the sake of our health, let's tone it down, be civil, scientific and objective.

  13. >@R U Smarter Than a 5th Grader said…

    "The use of AZA was not germane to the paper. AZA does not activate PBMCs, and the PBMCs were already activated."

    THEN WHY DID THEY USE IT?

    Why don't you know?

  14. >@ Anon 9:13 PM

    That is a false accusation against Dr Frank Ruscetti and Dr Judy Mikvotis. Dr Ruscetti performed all the Western blots and he introduced the wrong slide into the conference presentation, which was the one with the real patient codes. Are you sexist or something?

  15. >Paprotka et al.

    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. This was despite the authors knowing the sensitivity needed to be at a minimum 1-3 copies per 100 cells.

  16. >Paprotka et al.

    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.

  17. >Paprotka et al.

    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.

  18. >Perhaps people should await the outcome of the current investigations before rushing to the defence of anyone.

    It only makes us CFS patients look like raving loons who have no real interest in the truth.

    P.S. Gerwyn/Anonymous,

    Please find a new debating technique – you can insert the same message a million times but it's still garbage.

  19. >Paprotka et al.

    8) Failure to screen any wild mice for VP62/XMRV or PreXMRV-2.

    Is Science going to investigate this paper?

  20. >Dr Ruscetti performed all the western blots in Lombardi et al. and he mistakenly introduced the slide with the correct patient codes into the powerpoint. Dr Frank Ruscetti and Dr Judy Mikovits have been falsely accused. There are images on Abbie Smiths blog that could not have come from the published gel or slide.

  21. >I am fairly new around here. So tell me… Do ppl introduce the 'Loon' thing to try to stifle others who are posting?

  22. >The slides are not the issue here, as far as this community is concerned. It's just part of an overall pattern.

    The issue is that Mikovits knew all along that the test wasn't working — and thus that XMRV was not associated with CFS — but insisted in the most vehement, scathing public terms that it was working.

    This caused harm to patients, who paid for WPI to test them.

    It caused harm to other legitimate scientists, when Mikovits accused those who failed to find it of being in some sort of conspiracy to harm patients.

    It caused harm to our community, by making us all look like, yes, a bunch of raving loons.

    We don't need Wessely to cast aspersions upon us in the media, it seems. We're perfectly capable of doing it ourselves. All he has to do is sit back and laugh.

    When the Whittemores knew that the test wasn't working is as of yet unclear. If people are unhappy with the Whittemores, that's the question to be asking them.

    As for Jamie Deckoff-Jones and Judy Mikovits: they should be apologizing to all the people (starting with Dan Peterson) who they accused of conspiring against the patients' best interest in order to make money.

    Peterson, we now know, was entirely right. XMRV was a contaminant. And Mikovits knew it.

  23. >The only reason that the Lipkin study wasn't cancelled a long time ago was because patients would have screamed conspiracy.

    Now that things have been resolved in a scientific way, it likely will be cancelled soon regardless of how a few patients respond.

    For instance, on Friday, on its Facebook page, WPI stated:

    > We're currently in discussions with Dr. Lipkin
    and our team of researchers to determine the best way to move forward.

    Maybe the NIH would be willing to transfer the money for the Lipkin study to some other area of CFS research. Perhaps someone might ask them?

  24. >Please, please, please do not make me moderate this blog. No personal attacks. No repetitive posts. Take your pathology someplace else. Some of us are trying to figure out What Next?

    Warmly,
    Jamie

  25. >But this was also on their page under 'Future Research Plans'.

    "Although human gamma retroviral studies have presented many complicated challenges, we feel it is important to continue this line of research for now."

    ?????

  26. >Anon @ October 9, 2011 12:14 PM

    The problem with broadly using the term XMRV in definitive statements, is that it doesn't necessarily refer to a singular virus. It's being used in a dangerous game of 'hide the acronym'.

    The risk of sounding 'Loony' (and frankly, you wont placate any fearsome Psychologists with such stigmatic language) comes from the methods of denigration freely available to very intelligent people. The XMRV scenario wasn't required, this has happened many times before.

    It's just the latest opportunity.

    ME patients are stuck at home. ME patients thus converse on the internet. ME patients have days of eloquence and bad days in the same place. Both of which are subject to instant copy via forums and blogs.

    Any dream of reigning in risky comments requires you to be able to control a population of 17 million people.

    It is a disadvantage that will constantly be abused and those with the agenda to denigrate, belittle and deny legitimacy to ME patients will always have this resource. It makes us feel weak and unsure, and afraid of beginning to build unconventional opinions. An instant retraction of acceptance can stifle exploration, investigation and creativity.

    Lastly don't forget, it's not beyond someone with an anti-ME agenda using persona management software, and pretending to be 10 people, some of them posting the worst kind of comments to make us look bad. It works both ways.

    Advocacy has moved on and we all have to catch up or be owned by it.

    And yes.

    It. Does. Happen.

    http://www.guardian.co.uk/commentisfree/video/2011/sep/21/esc-ctrl-jon-ronson-astroturfing-video?INTCMP=SRCH

    -SJ

  27. >Whether the research goes forward seems far less up to the WPI and much more up to the NIH.

    XMRV has been shown to be at best a lab contaminant in a wide variety of ways, and the authors of the original publication finding it are being investigated for fraud. The only other paper with a positive MLV-CFS connection in it is Lo Alter 2010, and their test did not find any MLV's in the BWG study.

    Alter, who works for the NIH, seems to have been responsible for having gotten the money allocated to the Lipkin study. Insofar as his group decides their result was due to contamination, there will be no positive findings related to CFS-MLV left in the literature. The Lipkin search will be proceeding based on less than nothing.

    Think about how tight NIH funding is these days. The idea of wasting it on a nonsense mission is not going to go over well with the general public, and that has the potential of causing the NIH far more trouble than anything CFS patients in a million years could do. Especially since they already have concluded we're all nuts.

    But if we asked them for the Lipkin money to fund some other research, very possibly they might give it to us. Harvey Alter seems like a decent person and to believe that this is a "real disease." Nobody else would get mad at them for putting money toward other CFS research, especially since CFS is really underfunded to begin with.

    If the Lipkin study goes through though, they're really going to catch a lot of flak for it. And some of that will spill over to how people feel about CFS, unfortunately.

  28. >If the WPI had been able to accurately distinguish patients' blood vs. controls', through the use of any test related to MLV's, that would have been great. It wouldn't have had to have been XMRV in particular.

    Astoundingly, the test that WPI had insisted was so great at finding the virus did not distinguish between controls and patients (and also was unable to succeed even at identifying control samples that were spiked with virus).

    So it doesn't matter what we call the virus. Based on all the published evidence that we have (other than the Alter study), it doesn't have anything to do with this disease.

  29. >I agree that it doesn't matter what we call the virus.

    It seems a touch pre-emptive to name something before it is sequenced.

    -SJ

  30. >It is not a virus, but viruses.

    The blood working group never replicated the methodology of Lombardi et al. There was no Trizol or preservative with the PBMCs and the culture times for serology and culture were halved.

    The controls were not all screened by all labs, and no lab screened the controls PBMCs, so how could any control have been declared negative.

    The collection tubes were also stored with 22Rv1, used to spike the analytical samples with VP62. Hard to miss how easily that could contaminate the tubes.

    No assay in the blood working group was therefore diagnostically validated.

  31. >Anon @ 3:00 p.m.

    A serious problem for this community right now is the wide variety of ways in which people are spinning the findings of the BWG paper.

    At this point, it's not that Mikovits has given an explanation and others are supporting her on that. It's that multitudes of different explanations are being given by various people, most of them anonymous or using pseudonyms, with the result being that anyone who is not a specialist in retrovirology will inevitably be totally confused about the entire situation.

    This is not appropriate. It just obfuscates the facts.

    Since Jamie Deckoff-Jones appears to have become an unofficial representative of Judy Mikovits, let's see what she has to say about it (from her blog of a week ago):

    > I think what the BWG results mean is that all the XMRV/HGRV testing done at VIP Dx has been and is now null and void. Keep in mind that Dr. Mikovits works at the WPI research lab, which is a separate lab from the clinical, commercially-oriented VIP Dx lab. She believes that she has reproduced her original work many times and found evidence of infection in the patients who were previously found XMRV positive. But she never found any single patient positive on every date tested by every assay. So there has been an assumption that there were false negatives in the WPI research lab for some time. Another important thing to keep in mind is that WPI routinely used several tests on each sample, whereas VIP Dx used different, more limited testing, on the samples they received, testing that apparently was never truly validated against WPI methods or performed with appropriate controls. I personally don't know why this was the case or how it happened. Obviously the decision to sell a test was a very poor one, hindsight being 20/20. It left the institute with a difficult conflict of interest.

    >In terms of the BWG: I was told that the BWG specimens were being run in both the WPI research lab and the VIP Dx clinical lab. Though the labs were kept separate, and cooperation between the two labs was already very troubled, Dr. Mikovits believed that VIP Dx would succeed, and everything would be doubly validated.

    >When the results of the BWG were uncoded and revealed to all nine labs (but not yet made public), in early August, WPI was left in a bad place. Dr. Mikovits says that at that time she asked WPI management to stop offering the XMRV test at VIP Dx. But the testing was not stopped. Why?

    >Then, when the BWG results were finally made public on September 22, Dr. Mikovits was quoted as saying, "VIPdx lab will NOT continue XMRV-testing because it hasn't been shown to be reproducible in [the] BloodWorkingGroup". Shortly after she said this, cooperation between the two labs ceased completely and the research lab was closed. Why?

    >It is important to know that Dr. Mikovits stands by her work at the WPI research lab, which is all she can vouch for. She cannot account for what happened at VIP Dx. It was in a different location, under different leadership: Dr. Lombardi was in charge at VIP Dx.

    >Now it appears the WPI research program is getting thrown under the bus, but VIP Dx is still up and running, now minus XMRV testing. None of this means that we don't have HGRV's, or that some of the work that came out of the Mikovits-led research lab wasn't correct. What it does mean is that there is no validated test for clinical, commercial use. And it means we are now at risk of losing all the gains we've made because of poor managerial decisions.

    (To be continued below.)

  32. >(Continued from above.)

    This comment suggests that the WPI completed the BWG testing using the same test sold by VIP to patients, and appears to concede that the results of the BWG make it clear that the test does not work.

    Then an attempt is made to suggest that Mikovits had in her own laboratory a test that was better, but that was not used in the study.

    This is an extremely peculiar argument. The entire future of the WPI was riding on their ability to prove that they could properly identify these viruses. Mikovits was actively involved in the BWG project — her name is on the paper and her neck was on the line. And as the head research scientist at the WPI, she had been involved in setting up and keeping tabs on all the testing that was done over time, even if she wasn't monitoring all of it on a day-to-day basis.

    Considering the high stakes, the idea that WPI would have used anything other than their best test on the BWG project is inconceivable. And considering the importance it had to Mikovits' own reputation and career, it's inconceivable that she would have let herself be pushed off the project and allowed a bad test be used to evaluate the samples. Clearly she had no problems standing up to Annette Whittemore on other disagreements. Regardless of what one thinks of her, it's hard to imagine anyone characterizing her as a pushover.

    There's nothing in the comments from last week's blog to suggest that Mikovits has objected to the conditions under which the BWG samples were collected or stored. If she did have those kinds of concerns, it would have been appropriate for her to have brought them up before the results were announced, not afterwards.

    Certainly experimental methodology is important, and details can matter. If Mikovits wants to make a retrospective objection to how the experiment was done on those grounds, she should do so in an open public statement that can be evaluated and countered by those in the scientific community who have the expertise to do so.

    If she doesn't do that, then it seems inappropriate for others in the CFS community to be doing it for her. All it does it make everyone confused, at a time when what we all need most is as much objective understanding of the facts as we can get.

  33. >Hello anonymous who addressed me:

    You wrote: "The only other published study that has produced any findings of any MLV's in CFS patients was Lo Alter (PNAS 2010). "

    I think the research that showed murine retroviruses can spread to human lab workers is also relevant. I also think the research of murine retroviruses found in cancerous prostate tissue is not to be sneezed at.

    I think Mikovits is a smart, decent person who has now gone the way of many who take CFS seriously. Perhaps patient support for her ongoing work will keep her fighting for the uncovering of new retroviruses infecting humans and making them sick.

    As to Alter and Lo, Dr. Lo may turn out, after many years, to be the one who uncovers the truth. He is the one who holds the patent on mycoplasma incognitus and did the autopsies on six people from all over the world who died within six weeks of getting infected in some way with this mycoplasma. Most AIDS and CFS patients are also infected with mcyoplasmas. Are we also infected with a murine retrovirus or two? Could that explain why we can't clear mycoplasmas when healthy folks can?

    I spoke with Dr. Lo on the phone around 1997. He was very compassionate regarding CFS patients. I can only hope, perhaps, this time he may find the underlying cause.

    Only good ongoing research will tell. I think Judy Mikovits will also play a role in this. She stands in the shoes of Elaine DeFreitas. We must have more research and not hide our heads in the sand or blame the messengers. Many mistakes may be made before we get to the answers.

  34. >Paula Carnes at 5:13PM wrote: "I think the research that showed murine retroviruses can spread to human lab workers is also relevant. I also think the research of murine retroviruses found in cancerous prostate tissue is not to be sneezed at." Well, don't sneeze on the cultures, you'll just contaminate them! (Hahahaha lame attempt at humor–sorry)
    But seriously, do you have a reference at hand for a study on lab workers being infected by MuRVs? I am not a retrovirologist, and I am attempting to educate myself in order to better understand the controversies. Thanks.

  35. >Paula's post is quite good and I agree with it.

    Can this repetitive stuff stop? The points were made over and over again. And no one should be vilified or attacked personally. This blog is great. Issues are discussed in depth. But although we have CFIDS we get it, we don't need to be told repeatedly, and with venom directed — and let's not forget, towards women.

    Frankly, this very aggressive pushing again and again on the same things and personal attacks is doing the one worst thing for all of us, at least to me: It's aggravating and worsening my CFIDS symptoms.

    As I read this post and enjoy the well-meaning information — and appreciate the blog's organizer and writer — my arms hurt more, my head hurts more, and I'm exhausted.

    Can we at least have a civil discourse, be helpful and collaborate on this — and not make each other sicker? That's the bottom line for all of us.

    The "What Next"? is crucial. Let's wait and see what happens, yet keep advocating, pressuring the scientists, the NIH and whatever other government agency — and the media — to keep on researching and publicizing what's going on so we all know. And let's keep the pressure on for more government funding.

    The amount allocated to this disease is miniscule compared to the weapons' budget, bank bailouts, and so on, even to research for other diseases — although I don't fault that; people are sick, it's not their fault. All illnesses should be researched and treatments found. (I know too many people who have had cancer. I want the cause and cure found.)

  36. >Paula's post is quite good and I agree with it.

    Can this repetitive stuff stop? The points were made over and over again. And no one should be vilified or attacked personally. This blog is great. Issues are discussed in depth. But although we have CFIDS we get it, we don't need to be told repeatedly, and with venom directed — and let's not forget, towards women.

    Frankly, this very aggressive pushing again and again on the same things and personal attacks is doing the one worst thing for all of us, at least to me: It's aggravating and worsening my CFIDS symptoms.

    As I read this post and enjoy the well-meaning information — and appreciate the blog's organizer and writer — my arms hurt more, my head hurts more, and I'm exhausted.

    Can we at least have a civil discourse, be helpful and collaborate on this — and not make each other sicker? That's the bottom line for all of us.

    The "What Next"? is crucial. Let's wait and see what happens, yet keep advocating, pressuring the scientists, the NIH and whatever other government agency — and the media — to keep on researching and publicizing what's going on so we all know. And let's keep the pressure on for more government funding.

    The amount allocated to this disease is miniscule compared to the weapons' budget, bank bailouts, and so on, even to research for other diseases — although I don't fault that; people are sick, it's not their fault. All illnesses should be researched and treatments found. (I know too many people who have had cancer. I want the cause and cure found.)

  37. >All the problems with the blood working group are in the paper.

    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.

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