Who Are Our Friends?

Here are a couple of articles sent by friends this morning… link and link. I read them with my morning coffee and both made me feel sick for different reasons. I hated to dignify the first one with a link, because the site is so appallingly illiterate, but this is what the newly diagnosed will find when they go to the net to learn about their illness, since it looks like they aren’t going to get to have a real disease for a little while longer. But not to worry, Kim McCleary says doctors know it when they see it, “like Beethoven’s first symphony”. Oh you have CFS? Too bad. It’s caused by lots of things. Like a “stressful state”. XMRV was all a mistake. Take L-carnitine.

The second article blows my mind, because McCleary didn’t manage to say one thing I can relate to as a patient, other than yes, my daughter and I both have it. The swift decline and no resolution she describes doesn’t even come close to describing the course for many, if not most patients, since recovery to 80 or 90% within a year or two of the first episode is a common history. There are a large number of patients who experienced gradual onset, but wound up in the same place as the ones who remember the moment of onset, and one would expect her to be aware of this. Her description of my disease as “not sexy” is offensive. This woman definitely doesn’t speak for me. She’s the president and CEO of the CAA, the national organization for the disease we have. How did that come to pass? As I’ve said before, I’m a newbie. I only figured it out about CFS as an inseparable entity from treatment resistant Lyme when I read the Science paper. Before that I knew the extant drivel in both the conventional and alternative worlds that espoused the “it isn’t one thing” theory, but I didn’t identify, since the drivel in the Lyme world fit us better.

Now that I’m starting to wonder about the characters and history, which never really interested me before, and trying to consider the most likely motivations of the various players, it’s shaping up to have the makings of a rather twisted tale. History driven by the personal needs of a few people, millions of lives at stake. It may rise to the level of allegory. Our knights in shining armour? There’s the good old CAA. I’ve been sick on their watch for 16 years. Suzanne Vernon was spawned by our captors at the CDC, then went to work with the CAA. Take a look at the Banbury Report, about a meeting that took place a few weeks before the Science paper was published, in which Dr. Vernon states that she thinks one of the things she knows for sure is that it isn’t a retrovirus. Then there’s the HHV-6 Foundation. Dan Peterson is on the board of directors. And let’s see, Konstance Knox is an expert in HHV-6. In fact, Knox/Levy is the first paper she’s ever published that wasn’t about HHV-6. Her lab is heavily invested in an HHV-6 assay. I wonder what HHV-6 Foundation spends it’s research dollars on? And as Mindy Kitei asked here, what’s Dr. Levy’s stake in all this? Ah, what a tangled web… Life is stranger than fiction. Definitely a story fit for an Osler’s Web sequel.

Lots of people seem very committed to it not being a retrovirus. Why would that be? I realize that it can’t possibly be as black and white as it appears. They can’t all be psychopaths. They must at least be lying to themselves, like some of the scientists who said that simple endogenous animal retroviruses couldn’t hurt humans, and don’t even want to learn the truth now, preferring to be dead before the puzzle is solved.

Here’s a letter to Science from patient advocate Chris Douglas, that says it very well. link

Meanwhile, unrepresented patients are starting to organize. This is very important. We need to nurture the sparks of this fire. Don’t let it go out. Thank you, from all of us, to the participants. YouTube and Write up

The WPI is a translational medical institute, a discussion in progress, not expecting all the answers to be in before applying the pieces we do have. The mission of the institute is to cure CFS, but it is a small organization and the virus has turned into such an unexpected fight that defending the prior work is a huge task. Each new salvo triggers a wave of self-examination, trying yet again to find the flaw, but despite the multitude of negative studies, nobody has yet explained the most important thing. Only some of the patients are positive. Not none and not all. Far from requesting a retraction, Science, if truly objective, should be demanding answers with respect to the gaping holes in the arguments of the authors of the negative papers. A number of people have written that they hope the work at the WPI will not be limited to XMRV. The most recent Lombardi et al paper, Xenotropic Murine Leukemia Virus-related Virus-associated Chronic Fatigue Syndrome Reveals a Distinct Inflammatory Signature. Lombardi/Mikovits, helps to define the disease, whatever the cause and adding the clinical practice will further broaden the focus of the research.

What if it was all a mistake for some technical reason (though it’s hard to see how that could be the case). But say it was all a big accident. Then XMRV may still be a signpost. Paprotka et al found a cell line started in the early 90’s that produces it. Although the online supplemental information doesn’t tell us how they derived their number for probability of the event, even assuming they are correct, that it’s a very unlikely event, it happened once, and think how many chances there have been for similar events. This type of random recombination event may not even be necessary for HGRV infection, as already replication competent viruses may be involved, present in mice not susceptible to infection, but xenotropic, capable of infecting the cells of other animals, including human. Am I just speculating? Well, so are they. But if I’m wrong, some time and money is lost, in the attempt to save millions of people. If they’re wrong?

Breaking good news, for a change, from the International Conference on Human Retroviruses, in session now in Belgium, evidence that some labs can find XMRV in human tissue:

A Prototype RT-PCR Assay For The Detection of XMRV In Multiple Human Sample Types. Tang/Abravaya found positives in formalin fixed paraffin embedded prostate cancer specimens and urine pellets, using 22Rv1 for their spiked control, rather than a VP62 clone. Here’s a twist- Graham Simmons appears on both this paper and Knox et al. He didn’t tell the team he was on that couldn’t find it about the team he was on that could? How strange. But the important thing is this group was able to distinguish negatives from positive controls, even though the positive control was not a human isolate, and they found it in human tissue (not blood).

And these papers sound promising, but no abstracts:

XMRV replicates preferentially in mucosal sites in vivo: Relevance to XMRV transmission? Villinger/Silverman  

Detection of MLV-like gag sequences in blood samples from a New York state CFS cohort. Hansen/Bell

We also heard this from the Invest In ME conference held in London last month:

The final presentation was by Wilfried Bieger (Munich, Germany). He mentioned their earlier studies to detect XMRV, which had been negative.  His team had then collaborated with Judy Mikovits and set up a highly sensitive, specific and uncontaminated protocol for virus detection, sequencing of viral DNA and antibody testing with western blot. Viral DNA and RNA were not detected in fresh blood, but after cultivation of PBMCs for 6 weeks under stimulation and using partly co-culture with virus permissive LnCap cells, culture cells turned positive in some patients. Presence of XMRV was confirmed by sequencing XMRV specific DNA. There have been approximately 40% positives so far.

It’s more than smoke. It will burst into fire, despite the best efforts of some to smother it. We need to fan the flames. Don’t let them forget us again. There are future generations at stake that can’t be allowed to go through what we have.

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32 thoughts on “Who Are Our Friends?

  1. >Such a great blog, Jamie! You follow and examine this story in such a profound way. Thank you!!

  2. >i noticed the little jibe about isolating a space for the principals investigating to muck about undisturbed by us rowdy patients and their rowdy advocates. why do you think they wouldn't want any patients or advocates to see and/or question? why do they all the sudden think we're so scary when they've spent the last 30 years trying to speed us all to the grave? it stinks and it stinks out loud, and i'm grateful there are medical pros that can detect the stench and walk away from the prepared pile of crap. you all have my respect.

  3. >Kim McCleary is not fit for her job at all and she colludes with the CDC. Hillary Johnson has written extensively about the incompetence and corruption of the CAA. (I like to call the CAA the "CDC Advertising Agency", after getting a multi-million dollar no-bid contract to advertise the CDC's version of CFS on television and radio.)

    The abstracts coming out of the Belgium conference sound extremely promising. Thank you for the excellent blog.

  4. >What do you mean to suggest by this?

    "Each new salvo triggers a wave of self-examination, trying yet again to find the flaw, but despite the multitude of negative studies, nobody has yet explained the most important thing. Only some of the patients are positive. Not none and not all."

    Up until now, it's seemed that WPI's (or at least your) position was that ME/CFS was either partly or fully caused by this retrovirus.

    If that's the case, shouldn't all patients be coming up positive?

    Certainly there could be false negatives, but is that the point that you're making — that WPI's test is inaccurate?

    Another possibility is that you're suggesting that some people with ME/CFS have XMRV and some do not. If that's the case, then it doesn't seem like it's that important with regard to the illness. Maybe just the newest in the "Bug of the Month Club."

    A third possibility is that you're saying that the people who test negative don't actually have ME/CFS. If that's your point, it is problematic for those well-vetted patients who get tested and come up negative.

    For instance, rumor has it that Peterson's patients were coming up mostly negative from VIP — something like 80%. Of all ME/CFS doctors, he's likely the most picky in choosing patients — insisting that they provide voluminous case reports and then choosing only the ones that closely fit his criteria.

    If it's true that Peterson's patients were coming up so overwhelmingly negative, that raises questions about what's going on.

    Is it that XMRV is not the main driver of the illness for all people who have what seems to be a fairly well-defined illness (CCC ME/CFS)? (If that's the case, maybe it shouldn't be the only focus of ME/CFS research.)

    Is it that VIP's tests are super inaccurate? (Then patients shouldn't be paying for them.)

    Is it that XMRV is not a factor in the illness at all? (No one has proven that it's not a factor, but it's a possibility that it's not.)

    None of these explanations is very confidence inspiring. Conceivably, that could have been the reason that Peterson decided to work with a separate group on the topic.

    Just because he's not a friend of the WPI doesn't mean he's not a friend of ME/CFS patients. Is there not even the remotest chance that he might have been following the dictates of his own conscience on this?

  5. >Thank you Jamie for your excellent post and blog.

    Those of us following EVERYTHING are not going away.

    Despite efforts that may sway others, those with ME/CFS, their families, and others with neuro-immune illnesses are not buying "weasel words".

    Manipulation of words to disguise the truth or deflect attention to the truth is IMHO lying to the public. The time has come where we need to call a spade a spade.

  6. >That quote about "Beethovens symphony" was used by Dr Charles Lapp to convey that the doctors who were FAMILIAR with the illness could recognize it with ease.



    Lapp first encountered CFIDS in 1984, before it had a name. A business executive had come down with a terrible illness. He would work for a day or two and then be stuck in bed. At the same time, Lapp read about an epidemic in Lake Tahoe, people suffering with the same symptoms. By the early ‘90s, Lapp had decided to focus on CFIDS. Today he treats about 2,000 sufferers in 49 states and nine countries, and he represents The CFIDS Association of America on federal panels. His clinic is [among] the first to get Food and Drug Administration approval to test Ampligen, a drug he things will fight the illness.
    Although there is no test to confirm CFIDS, Lapp says the symptoms are easy to recognize.
    "A sleep researcher at the University of Toronto said it best: ‘It’s like listening to the first few notes of a Beethoven symphony,’ Lapp says. "You hear da-da-da-da and you know everything that’s coming next."

  7. >(I'm certain he must have been referring to Beethovens FIFTH symphony)

  8. >Where does Suzanne Vernon say she knows for sure it isn't a retrovirus? The Banbury Report you linked includes explicit presentation of Brigette Huber's work on HERVs.

  9. >You can find the information in Molecular Interventions 2010 . Annette Whittemore wrote that article before HHV-6 foundation and Dr. Peterson left the WPI behind for their own selfish reasons . Why didn't Levy listen in 2007 ? Why didn't HHV-6 foundation ? Why is everyone so against a theory ? Let it play out in Science not Politics .

  10. >The new tissue test from one of the Knox et al authors should now be used to test the blood of those same patients. Lets see how sensitive it is.

  11. >Drs used something called pattern recognition to diagnose patients.This often called schema driven processing.

    The trouble this is that schema are actually symbolic constructs.What Drs actually recognize is what they believe the illness to be or what they believe the symptoms to signify.

    It is vital in being able to recognize and treat patients.No Dr would ever rely on this ability without using the tools of differential diagnosis.To include people in a trial without using methods which objectively separate people with a neuroimmune disease from the plethora of people with fatigue caused by a myriad of different factors is medically and scientifically illiterate.

    This paralyses progress re the discovery of causation.Without the illumination of causation there can be no cure as our Kim knows only too well

    Please don't be deceived by the RT-PCR assay it is not what it seems to be

  12. >I am appalled that your statements about the CAA, including McCleary and Vernon, are taken from third-party sources that contain many inaccuracies. This is true of one of your previous blogs as well in which you trash the CAA with impunity. You hold strong opinions, perhaps best described as biases, based on inaccurate premises.

  13. >Dear Anon #1, I'm not Dr. Jamie, but I will respond to your concerns. The WPI truly have an open mind about ME/CFS causation. Only the other week, this was reiterated by Annette Whittemore at the Invest in ME conference in London. Every accusation of contamination, every alternative explanation for the Science study findings has been thoroughly investigated, and found wanting. They do not stand behind their findings from a position of belief, but rather from a position of detailed scientific examination.

    If the assays were contaminated, then all samples tested with those assays would be positive, which is not the case and rather discredits the contamination theory. The much lower prevalence (3.7% to 67% initially) of HGRV infection in controls also belies contamination, as does the discovery of antibodies by serology.

    The WPI have never claimed that HGRV's are causative of ME/CFS, only that it is a likely hypothesis. Dr. Jamie's health has improved on anti-retrovirals to the point that she can work again, after years of being home-bound, and that does rather speak to the retroviral causation hypothesis, however what distinguishes the WPI and Dr Jamie is they prefer to be informed by science, rather than politics and career opportunities.

    We are in the early days of HGRV testing, and the socio-political construct of CFS is not an objective diagnosis. Because of these two facts, the less than 100% positive results are to be expected, and do not disprove the HGRV hypothesis. No HGRV tests have been perfected, to date.

    The WPI's tests, however, are streets ahead of those used in the 0/0 papers such as Levy and Knox, which cannot find any HGRV's. Actually, that's not quite true. Knox found a weak serology signal in one patient, and then tweaked the test to tune it out.

    Regarding Dr. Peterson's patients, we just do not know the facts at this time. I prefer to deal with facts, not gossip. Let the science speak for itself.

    The WPI needs to be allowed to get on with their translational research. They need the time and the money to open their clinic, and test treatment options in a setting where biomarkers can be monitored.

    Why is it that this seems to worry so many of the 0/0 study authors? So many of the papers have at the bottom an admonition trying to prohibit the use of anti-retrovirals? Why is it so important to stop this line of enquiry, when the very same drugs are used as a prophylactic in healthy people against HIV infection? Do they not know how sick we are?

    Could the reason be that that is a way to prove or disprove the HGRV causation hypothesis, and for some reason a large and powerful group do not want that hypothesis tested, far less proved?

  14. >McCleary and Vernon have repeatedly demonstrated their ignorance around science. They are also bad at advocacy. Time for them to be gone and the whole useless CAA. Looks like that is happening.

  15. >I usually try to be very polite and considerate of others but I am so sick of people posting under anonymous.

    MAN UP and post under your names so we know who you are!!!

  16. >Thank you, Dr. Jamie. You are speaking the truth. The CAA has served its own purposes and helped the CDC bury the research which could have helped ME sufferers–and they have been doing this for 25 years. Sufferers are now aware of the self-serving actions of the CAA, giving McCleary and Vernon fat salaries while ME patients suffer and die. There is now a Petition from patients to disassociate from the CAA.


    Anyone who feels the same way I do–that the CAA is an obstacle to the well-being of ME sufferers, please sign this Petition.

    The CAA has been serving its own interests for too long. Everything Dr. Jamie has said about the CAA is true. We do not need another 25 years of them.

    Patricia Carter
    XMRV+, 24 years M.E.

  17. >I am patient of 24 years and a past supporter of the CAA when Marc Iverson was the president. I and watching the CAA from the beginning and all I can say is the CAA is Kim McCleary. The board has no power and is basically under her full control.
    The CAA is not a friend to people with NueroImmune Disease or ME. If you believe you have a NueroImmune illness the CAA is not fighting for you but is in fact working in tandem with the Government in minimizing the seriousness of this our disease.
    The mantra of Solve CFS while perpetually keeping them in the money does nothing but do just that. There is no such disease as CFS it is a government concocted construct which cannot be solved because it is not a real disease. Who gains from all this. Well the person with the 180,00 dollar salary that will continue no matter what progress is made.

  18. >If we were writing fiction about an evil "advocacy" group out to feather its own nest at the expense of those for whom it purports to advocate, we could hardly create one worse than the CFIDS Assn of America. We couldn't make up this stuff. They have failed to help us for 30 years and they go on blithely saying how great they are doing, while ME patients suffer and die. Their self-interest and arrogance are beyond belief.


    4/7/11–CAA Research Director, Suzanne Vernon, reprimanding Dr. Judy Mikovits at the NIH State of the Knowledge Workshop:


    Judy, I think you need to be careful. You said "When Lipkin decides…You said when Lipkin decides whether or not XMRV is real." Be careful with that.

    2/23/11–CAA post on Facebook announcing CFS in the news, interview with Katie Couric:


    CFS will be featured tonight on “The CBS Evening News with Katie Couric.” The report will focus on a new research study on biological markers identified in the spinal fluid of CFS patients. The study is embargoed until 5:00 p.m. We will send an analysis and links to CFIDSLink subscribers at 5:00. Note: Writing to CBS and Couric about the PACE study may only serve to shift the focus away from the exciting new report.

    2/23/11–Suzanne Vernon, CAA Research Director, to the Wall Street Journal:


    It’s difficult to have a diagnostic test based on spinal fluid,” says Suzanne Vernon of the CFIDS Association of America, a CFS patient advocacy group, who was a consultant on the PLoS study. “You can’t just go poking everyone in the spine

    2/17/11–Kim McCleary, CAA CEO, quoted by CNN in reference to the PACE Trial:


    The president and CEO of the Chronic Fatigue and Immune Dysfunction Syndrome Association of America, Kim McCleary, said the study focused on treatments that many in the United States have no access to.

    “I think it would be challenging, at least in the U.S. system, to purchase the services that they’ve tested in this trial,” she said in a telephone interview.

    The alphabet soup of acronyms that represent the interventions used in Britain is “just not something that our health care service offers, is reimbursable, or is really available here,” McCleary said.

    October, 2010–McCleary, CAA CEO, "From the CEO's Desk":


    This morning, like most mornings, I listened to National Public Radio (NPR) while I dressed for the day.

    “We use our inside voices to bring you the news,” the announcer stated plainly.
    Today is the last day of the local station’s on-air fundraising drive, and she was telling listeners what she thinks makes NPR different from other news outlets, encouraging a pledge to continue “calm, reasoned reporting.”

    Later, I thought about her message as I was making final edits to CFIDSLink. When you hear from the CFIDS Association, we use our inside voices too.

    March, 2010: Suzanne Vernon in response to the negative XMRV studies, in her article,
    "Playing a Weak Hand Well":


    The PLoS ONE paper by Erlwein, et al, the Retrovirology paper by Groom, et al, and now the van Kuppeveld, et al, paper in BMJ all studied well-characterized patient cohorts that met accepted and widely used CFS case definition criteria.

    Patricia Carter

  19. >The CAA serves only its own interests at the expense of the patients. They are a front organization for the CDC. It is time for them to be cast aside so that we can reclaim our futures.

  20. >every single time you post a new blog there is the long statement of anonymous trying to call you out. why doesn't this particular anon write their own blog? why do they feel the need to respond verbosely to all your posts? could this be a person with a very personal grudge whose crap we are being spoon fed? come on, anon at 9:46, make my day and publish your name instead of hiding in the world of comments.

  21. >Who are my friends? Those who are voting every single day for the WPI and not for other charities in the Vivint Contest. And they are not many…. over 300 patients are voting every day. And maybe even less… in my family I have 10 members voting with and for me so if other patients have done the same…. a small bunch of us are left.

  22. >DR. Jamie, You are so confident that XMRV is the cause of ME/CFS that you tear others down, instead of allowing Science to be the proof. The world is against you and WPI. You have no first hand dealings with anyone, except WPI that has hired you to blog trash for them. You remain in another state as chief of blogging trash instead of being at WPI. The negatives papers you discuss were science papers that were able to prove XMRV is not an infecting agent to humans, you are calling them negative, when they are just proofs.

  23. >Dear Jane Clout,

    I couldn't have said it better myself.

    Thank you,

  24. >Wasn't there a question of whether the positive samples might have been handled differently? Has WPI addressed that?

  25. >Anyone who naively believes the CAA is trying to help ME/CFS patients needs to read Osler's Web by Hillary Johnson for the history of how Marc Iverson was pushed out by McCleary and gang and how they have worked against our interests ever since. Her co-conspirator, Suzanne Vernon, is still helping "design" studies authored by Bill Reeves and Beth Unger purporting to show that gynecological abnormalities cause "CFS". They're still trying to paint this disease as hormone driven hysteria. Where is the concern for children and men?

    The intensely illogical mantra that patients with extensive evidence of SOME retrovirus or virus (lesions in the brain that look just like those in HIV/AIDS, rare cancers, autopsies that show viral infection of the spinal chord and nerves) shouldn't be taking antiretroviral and antiviral drugs is the latest, largest clue that there are ulterior motives in those papers that end up editorializing from no evidence at all. Papers like Singh's latest and Levy's are merely platforms for making this absurd propaganda.

    Calling those drugs "toxic" and "dangerous" when they've been saving the lives of HIV+ babies, pregnant women and others with Hepatitis B. AND failing to acknowledge the fact that ME/CFS patients like Dr Deckoff-Jones and Dr Snyderman have regained a significant part of their health is nothing short of hostile. They haven't cared in 25 years, so what's the concern for our health all of sudden?

    When the Science paper first came out, Coffin said that treatment with ARVs would prove or disprove a retroviral cause or association. What happened to turn him 180 degrees in the other direction? Nothing scientific, I guarantee you.

    Thank you Dr. D-J for your honesty and your courage.

  26. >Who are my friends?

    Those who frankly and honestly say the words "CFS happened exactly as described in Osler's Web".

    Those who choke, spit and sputter, and contrive lengthy explanations for why they won't agree that this is how it happened,
    are no friends of mine.
    Especially if they are "CFS organizations" or "CFS advocates"

  27. >Such a great post, thank you, thank you! So glad to hear your thoughts and the new papers on HGRVs!!

    And will CAA please finally replace Kim McCleary with a trained monkey?! We need the $178K for research, real advocacy and bananas!

  28. >Ms. McCleary,

    I own the phrase "CFS is the ultimate Rubik's Cube"TM Please cease and desist your use.

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