With A Little Help From My Friends

Somebody posted on FaceBook a few days ago: I love my computer, because my friends live in it. For no one has that been more true than for me, despite the trolls. I started to write, because I was so excited about what was happening and thought sharing my experiences would be useful. My selfish motivation was to move it along as quickly as possible, so we could all get on with it. I thought the anecdotal clinical responses might drive it, along with fear of a contaminated blood supply and the lure of money for the drug companies. I actually felt a twinge of regret that by the time I was ready to work, it would be all figured out. Ha!

I wrote because it was all I could do at the time, and it didn’t matter what anyone thought about me. Work was an impossibility, a fantasy. Now I’m working part time and taking care of a very small number of patients. I am caring for them in a very hands on way, like they are all Ali:). I will be max’ed out very quickly. I am not selling a protocol or seeking patients on this blog. That will take care of itself word of mouth, as it did in my last practice. I am writing to share with people who could never get to me. Many readers are on the other side of the world. My approach to treatment is very moderate and non-invasive, having learned from the mistakes of the past. Primum non nocere. Why should that threaten anyone? Unless you disagree with my question authority point of view. Honestly, the idea that what I’ve been saying has ignited such a firestorm is a puzzle. You would think that people would be happy that a doctor is willing to share openly, not to mention hearing that someone is making progress. Instead the whole thing has spun into some weird parallel universe where the critters all have big, sharp teeth. That’s what has me scratching my head. The response is so off kilter to the message.

My interaction with Jason was a personification of the problem. After insulting me on my own blog to the point that I thought he was a troll, he sent me a request to review the science and post his thoughts. I responded as warmly as I knew how. The only thing I asked was that he learn something about the disease. I offered to share with him, so that the time he put into it would be meaningful. He said he would review the literature. Period. End of discussion. If it isn’t in the literature, it doesn’t exist. Below is my second letter to Jason.

Dear Jason, 

I deeply appreciate your coming forward as yourself, and not an anonymous poster. I will publish what you write without editing. I will only state that it is opinion, not fact, and that I think you were brave and generous to do it. If I disagree, I’ll blog my thoughts after. The only way I wouldn’t post is if it was clearly written from a place of needing to prove me wrong. I am asking you to come to this project with a “beginner’s mind”.

“In the beginner’s mind there are many possibilities, but in the expert’s mind there are few.”
~ Shunryu Suzuki

In your quest for objectivity, please don’t forget that there are real people with a horrible disease, many trapped in their beds with no medical care and no hope. I am the CFS suicide hotline. The shoulder to cry on. I take calls and email regularly. I am not exaggerating the importance of what you write. Please take that responsibility very seriously, even if it makes you somewhat less “objective”. Think about why the hypothesis might be right, not just why it’s wrong. Don’t decide going into it what the answer is, even though I have attacked some of your heroes, you think unfairly, but I think they have shown an incredible lack of compassion, cruelty to oppressed people. 

I don’t think that you can fully consider the hypothesis without understanding the pathophysiology of CFS, autism, Gulf War Illness, Lyme Disease. Also human and animal retroviral disease. The veterinary literature is very telling. What you will find when you start to look into viral etiology of CFS is literature proving it isn’t EBV or HHV-6. There is nothing but the recent furor to connect CFS to retroviruses. Other than Michael Snyderman’s data, published as a poster presentation. So the only choice is to start with a hypothesis and work backwards. Please bear in mind, I am a doctor, not a scientist. I sit in a room with people who want to die because they have lost everything, are suffering unbelievably and are laughed at by doctors and scientists. Imagine having the worst day of flu of your life and having it never go away (not the way I got sick btw). Then maybe a hundred other horrible symptoms, pain, nausea, intractable headache, chronic cramps and diarrhea, sleep deprivation. Then your doctor sends you to a psychiatrist who says you are too focused on your symptoms. Cowboy up. Only you can’t even sit up. Then your kids and husband start getting sick too, and nobody cares. 

 
I have never claimed to be ‘objective’. It was an ah-ha for me. A 15 year mystery, that almost cost me my life (transfusion, emergency surgery, small bowel resection at midnight, TPN), beginning to give up its secrets. A mystery that ended any chance for a normal life for my beloved daughter at 13. I am tearing up as I write this, thinking of what she was like when she was the size of your precious baby. Not that she isn’t wonderful now, but her life is so diminished compared to the one she could have had. I was 41 and a successful doctor, so I had something to fall back on each time I’ve recovered enough to do something, but the kids who get sick in adolescence never get to live at all. The second generation is sicker. The youngest person I’ve heard of with CFS is 4, not autism, CFS, 3rd generation. Grandma is very sick. Mother, a doctor, a little sick. Doctors and nurses are over represented in the patient group. Also vets. You should be able to share in my outrage at the lack of epidemiological studies, since it doesn’t impact your field, once you start to hear what the patients are saying about their families (some on my blog). I am looking forward to your figuring out how little money has been spent on a disease that affects so many and causes so much disability. You wouldn’t believe the untapped talent in my mail. 


Judy Mikovits heard the pain of the patients. Too much for her own good. She took all the desperate mail and was terribly affected by it. She visited horribly ill patients in the UK and Norway, who are being abused by their doctors and governments. Patients lying in dark rooms with ear protection and feeding tubes, for years; too weak to roll over, begging to be let out of their bodies. I kid you not. I got involved with the WPI because Judy was answering all this mail, from people who were writing to me also, and she was really bad at it, while it was a reflex for me. Judy Mikovits is a gifted scientist, with human frailties. She was working in an impossibly toxic environment with no help and the entire old boys network coming down on her. She did lots of things wrong from a PR point of view. What she did or didn’t do right scientifically will all come out in the wash. It is the finding the novel pathogen, or more likely pathogens, the theory that matters now and that must be investigated. Even though you prefer deductive reasoning, genius requires induction. There is an enormous opportunity here for you, both as a scientist and as a humanitarian. It is possible to be both. 


I have brainstormed with Frank Ruscetti. He thinks it’s real. Sandy Ruscetti thinks it’s real and she understands the murine retrovirology better than almost anyone. I had dinner with Ian Lipkin. He said “it smells viral”. He was clearly very interested. It isn’t one of the known pathogens… 


I know you are in the lion’s den and need not to get eaten. But always question authority:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1182327/?tool=pubmed 


The ‘souless freak’,
Jamie 


PS. I didn’t send any letters.

PPS. Another Suzuki Roshi quote: 

If you want to enjoy the movie, you should know that it is the combination of film and light and white screen, and that the most important thing is to have a plain, white screen.
~ Shunryu Suzuki

Jason 
Jamie

I sent our correspondence to five trusted friends for reality testing, two of whom are well known advocates, before I answered Jason’s response to my letter. Complete consensus. One of them called him a ‘snot’ and I did pass it on to him, I confess. If the shoe fits. I suggested he start his own blog. I’m sure, in fact, Jason is a very nice young man, with a young family, trying to get by, like all of us. He doesn’t even really know what hit him, removed as he is, working in an ivory tower environment. He was unwilling to take off the blinders and my readers don’t need any more negativity. Plenty of that to go around. Patients, with no medical help, have to decide what to do, in real time, with incomplete information, in a very imperfect world. And I have to treat patients in the here and now.

The attacks are an energy suck. Not just my energy, but readers’ precious energy. Any suggestions about how to deal with it are greatly appreciated. It is very strange to be judged by anonymous people. It’s not just me that they are judging, but the uppity patients who agree with me. If nobody was reading, they wouldn’t bother with me. It is the growing sense of community that is spooking them, not lil ol me. Being forced to defend myself again and again, to prove I’m right, when I’ve never said that I am, serves no one. Being right is the booby prize.

I want to get better. I want my daughter, my patients and my readers to improve. If somebody has better ideas, please share them. The name of the blog is X Rx. I think it is still appropriate. Virologists call an unknown pathogen X. Elaine De Freitas called her virus X. I concede the URL is obsolete. But the point is, it does me no good to be right if it doesn’t result in treatment, at least an approach to the illness. We can start to look at our NK cells, number and function, as well as cytokines. There are many things that can be done for AIDS, in the alternative medicine world, in addition to HAART. Let’s look at those. One of the reasons we are better is the excellent help we’ve had from our FP, Russ Canfield, a smart, young doctor in Santa Fe, who has a profound understanding of the functional medicine piece, which I didn’t find cost effective when I was in practice last time, but which, he is slowly convincing me, has made progress since then. I have a longstanding interest in herbs. Trying to put it all together, like everyone else. The blog is an assist, bilaterally, except for anonymous attacks and gratuitous insults. I will persevere, as the vast majority of the feedback I get is positive, even from people who disagree with me.

Today’s song: With A Little Help From My Friends
by Joe Cocker
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188 thoughts on “With A Little Help From My Friends

  1. >@Agatha

    Jason has offered no scientific explanation for his need to ditch HGRVs research.

    The term xmrv refers to the VP-62 clone

    Gammaretrovirus or gammaretroviruses is the correct genus.

    Human gammmaretrovirus is acceptable.

  2. >@ Tony: Catch up! Dr John Chia has been researching enteroviruses in "cfs" for a very long time. He is now adding tenofovir to his treatments for some patients and has said the enteroviruses may be co-morbid with a retrovirus.
    -oerganix

  3. >There's a lot of anger coming out on this blog lately. The question is how can it be channeled constructively?

    I'm a literary critic, not a scientist, and the one thing I do know right now is that we need to tell a better story. Mix things up. Keep people on their toes without permanently alienating them. Lots of science has already been done. There's plenty of material to draw on.

    Jamie, at one point I think you had an idea for a coalition of MDs to do advocacy. Why not pick this up again?

    I've been reading around the history of other diseases, wondering, how did they gain awareness for their cause? How did they move forward?

    Here's a piece on the history of MS. Note a similar progression: mystery, resistance, small scale studies, private partnerships, finally, government studies:

    http://www.nationalmssociety.org/download.aspx?id=32

  4. >I think some people who claim to be scientists should stop alienating the community with poorly conducted studies, false conclusions and attempts to shut down HGRV research, whilst they continue the research ready for rediscovery of the same viruses.

  5. >Anon 10:47. Sure, great. So what are you actually going to do about that? What can you do that is constructive?

    (I'm also not sure why you think this is such a bad thing. Intellectual property claims have a way of getting themselves sorted out. Dr. Mikovits and co. have filed their patents.If more scientists are actually researching HGRVs under cover, what's not to like?)

    The real question, for me, is, if the Ruscettis are still committed to HGRVs, why aren't they raising hell right now? They are established. They are likely nearing retirement. They've made their mark. It doesn't seem like they've got much to lose at this point.

    I may be naive, but if there is more to the HGRV story, I think it will come out soon.

  6. >I have to agree with Agatha. This seems to be a fire storm of very little importance. Why has it gone on for so long? Jason I hope you do read and investigate and come to understand ME/CFS. I think we lost a chance to hear from someone like you and a chance to educate you about the real life situations of patients. We should take advantage of any opportunity we have to converse with scientists on an adult level. Perhaps the exchange would reach further than just one person.

    Jana Jagoe

  7. >Jason said…
    There is no ivory tower just someone doing honest research on a really cool virus.
    ———————
    And there's the problem. There is no such thing as a "cool" virus, to those made profoundly ill by one of them.

    What is so cool about viruses that destroy lives? This is not an academic, theoretical exercise. This is not some video game where you get to walk away from it at the end of the day and no one gets hurt. This is real life.

    There are millions of real-world victims, none of whom thinks it's all that "cool" how their lives have been destroyed (regardless of which virus it may be).

  8. >Jason will never actually say that human gammaretroviruses are not infecting people. Now why would he be unable to say that I wonder.

  9. >If more people were willing to listen to scientists then research into this illness would advance much more quickly. Frankly, I've had enough of quacks and amateurs like "Gerwyn" ( is NOT and has NEVER been a virologist, DOES NOT hold any virology qualifications ). It is blatantly dishonest and frankly reprehensible that amateurs are misleading patients about what's going on. Dr Deckoff-Jones, as a long-time MD, you should appreciate the scientific method better than most. It is dishonest to pretend that current scientific evidence does not strongly suggest that "XMRV" is a total dead end. If people accepted this then CFS research can move on to areas where some breakthroughs can finally be made, whether that be virology, endocrinology, neurology or whatever. The dishonesty from amateurs must stop. Listen to the professionals or the quacks will take over completely.

  10. >I am amazed and outraged that Jason’s wholly reasonable offer to share his thoughts on this blog met with the response that it did.

    Jason is a person who has a background that might allow him to develop a reasonable hypothesis about the illness and who has put some thought into the topic.

    Whether he is “callow” has nothing to do with it. Medical science is about getting to the truth so that treatments that work can be developed — not about making everyone feel warm and fuzzy (but still desperately sick).

    Maybe his hypothesis had merit. Maybe not.

    
We at least should have been able to hear it.

    This is the same phenomenon that happened here with the toxins.

    
The idea that a pathogen other than a retrovirus may be a/the cause of CFS is widely accepted to be a plausible one. The idea that some sort of toxin may be a/the cause of CFS is widely considered to be a plausible one.

    Only in the minds of those few people who currently/formerly have been associated with the WPI, and in the minds of a handful of patients who believe their propaganda, have those possibilities been ruled out.

    But Jamie’s response to all such proposals has been a sardonic, “Yeah, you’re right, I’m wrong. Get lost.”

    This is neither scientific nor professional.

    Considering that the evidence that an MLV is responsible for the illness is not nearly as clearcut (to put it mildly) as it was two years ago, why not listen to alternative proposals?

    

How can the decision to exclude such discussion (apart from its being “off-topic” with regard to the outdated url of the blog) be justified?

    What are people so afraid of?

  11. >All the 00 papers are invalidated as VP62 has never once been found in nature. PCR assays optimised to detect VP62 cannot detect HGRVs.

    In the blood working group all assays, but that of ViPDx, which was rendered non functional by the absence of trizol in the frozen PMBCs and contamination by mycoplasmia, were optimised to detect VP62 using high stringency PCR conditions and annealing temperatures that would only be capable of detecting VP62.

    In HGRV research there are two positive papers with the same findings. Lombardi et al and Lo et al.

  12. >@Anon 12:22 PM

    You sound like you are saying. OMG! OMG! people are thinking for themselves. LOL. Scientists also have ME. Virologists also have ME. VP62/XMRV has never been found in nature.

    Human gamma retroviruses were discovered by Lombardi et al. and Lo et al.

  13. >Can anyone now name a paper that did not use VP62 and can still be included in this body of research into human gamma retroviruses?

  14. >No wonder the medical system in this country is so dysfunctional. Here we have scientists who are being paid with our tax dollars coming on blogs telling people why they are "certain" that this or that doesn't cause a disease with *unknown etiology*. Personally, I don't know how you can be certain of anything if you have never done any research on it and don't want to even learn about it. Science and therefore scientists don't exist in a vacuum. Its not exactly "science for science sake". You are getting paid with public money to expand knowledge so we can solve health problems. Its fine if after looking at the research you think that you don't agree with the XMRV thing. But if that is the case why don't you stop posting to this blog and actually do some research and figure out what *is* causing this horrible illness?

    Its very easy to sit there and tell someone you think they are wrong. Its much harder to actually figure out what is right. We need much more of the later.

  15. >@Anonymous 12:05 PM

    The aspect of the science that is looking rather tatty is the contamination theory relative to the polytropic gammaretroviruses that were detected by Lombardi et al & Drs Lo & Alter. As I imagine you are becoming increasingly aware. Frankly the patient community is growing rather tired of certain scientists who seem incapable of representing developments in this story in an honest & reliable manner. It is the dishonesty from these professionals that needs to stop I would suggest. Or I fear such professionals themselves run the risk of being viewed as quacks..

  16. >To the so called "Professionals" and Jason,

    HERE LAY'S YOUR ARROGANCE AND IGNORANCE

    THE "UNPROFESSIONAL'S" ARE THE PATIENTS WHO HAVE BEEN SICK OVER DECADES WITH ME/CFS, STUDIED AT LEAST FIVE TO TEN YEARS EVERY RESEARCH PAPER PUBLISHED ON ME/CFS, KNOW THE HISTORY OF ME/CFS, HAVE TALKED TO HUNDREDS OF OTHER PATIENTS, HAVE AN IN DEPTH UNDERSTANDING OF SYMPTOMS AND DISEASE PROGRESSION, AND HAVE OTHER FAMILY MEMBERS DIAGNOSED WITH ME, OR OTHER NEURO-IMMUNE DISEASES.

    AND SOME OF THIS PATIENTS ARE ACTUALLY ALSO DOCTORS, NURSES AND MICROBIOLOGISTS. LIKE DR.JAMIE !

    NOW JASON, AND THE OTHER "PROFESIONAL'S" HERE, WHAT CAN YOU SHOW ? A FEW YEARS OF GENERAL MICROBIOLOGY AND IF WERE LUCKY, MAYBE A BIT OF WORK IN RETRO-VIROLOGY?

    AND WHAT DO YOU ACTUALLY KNOW ABOUT ME ?

    HOW DARE YOU TO APPROACH JAMIE, AND US WITH SUCH ARROGANCE !

    WE ARE ALWAYS OPEN TO "PROFESSIONAL'S" WHO WANT TO LEARN ABOUT US AND OUR DISEASE, AND SHARE THEIR KNOWLEDGE, BUT WE ARE NOT OPEN TO THE ARROGANCE OF PROFESSIONAL'S WHO HAVE NO CLUE OF M.E.

  17. >>Jason will never actually say that human gammaretroviruses are not infecting people. Now why would he be unable to say that I wonder.

    Because this is not the language of science.

    Deductive logic will not allow us ever to wholly eliminate the possibility that a phenomenon exists. We only can fail, time after time, to confirm its presence.

    When a proposition has been tested in a variety of ways without any confirmation becoming apparent, that generally is taken as an indication that perhaps resources might be better spent elsewhere.

    This is how science works.

    Jason's language is reflective of his training as a scientist.

    Perplexingly, such scientific training appears to be held in low esteem by the author and many of the readers of this blog. They appear to prefer propaganda and pipe dreams.

  18. >Further evidence in support of the HGRVs hypothesis for ME/CFS.

    ML's infect B cells.

    Benefit from B-Lymphocyte Depletion Using the Anti-CD20 Antibody Rituximab in Chronic Fatigue Syndrome. A Double-Blind and Placebo-Controlled Study

    Abstract Top
    Background
    Chronic fatigue syndrome (CFS) is a disease of unknown aetiology. Major CFS symptom relief during cancer chemotherapy in a patient with synchronous CFS and lymphoma spurred a pilot study of B-lymphocyte depletion using the anti-CD20 antibody Rituximab, which demonstrated significant clinical response in three CFS patients.

    Methods and Findings
    In this double-blind, placebo-controlled phase II study (NCT00848692), 30 CFS patients were randomised to either Rituximab 500 mg/m2 or saline, given twice two weeks apart, with follow-up for 12 months. Xenotropic murine leukemia virus-related virus (XMRV) was not detected in any of the patients.

    The responses generally affected all CFS symptoms. Major or moderate overall response, defined as lasting improvements in self-reported Fatigue score during follow-up, was seen in 10 out of 15 patients (67%) in the Rituximab group and in two out of 15 patients (13%) in the Placebo group (p = 0.003). Mean response duration within the follow-up period for the 10 responders to Rituximab was 25 weeks (range 8–44). Four Rituximab patients had clinical response durations past the study period. General linear models for repeated measures of Fatigue scores during follow-up showed a significant interaction between time and intervention group (p = 0.018 for self-reported, and p = 0.024 for physician-assessed), with differences between the Rituximab and Placebo groups between 6–10 months after intervention. The primary end-point, defined as effect on self-reported Fatigue score 3 months after intervention, was negative. There were no serious adverse events. Two patients in the Rituximab group with pre-existing psoriasis experienced moderate psoriasis worsening.

    Conclusion
    The delayed responses starting from 2–7 months after Rituximab treatment, in spite of rapid B-cell depletion, suggests that CFS is an autoimmune disease and may be consistent with the gradual elimination of autoantibodies preceding clinical responses. The present findings will impact future research efforts in CFS.

    http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0026358

  19. >@Anon 1:51 PM

    Jason will only ever say that in relation to VP62/XMRV, despite that having never been once found in nature. He won't say it about human gammaretroviruses though.

    So you miss the point.

  20. >Just for information's sake, when people raise that Jason should be given a forum for airing his views here, I want to remind all that he repeated his points at least 50 days, over and over again in long posts or broken up into several posts one after the other.

    And it was tolerated. Me, I would have stopped this repetition and arrogant, know-it-all tone several posts ago.

    It's pointless and destructive to people who are living with this illness. It drains energy, and for me, it aggravates symptoms.

    Can't folks discuss all of this objectively, without criticizing anyone here? It does not help in understanding and thinking through this disease and possible causes.

    And it's a bit demoralizing to see this tone repeated.

    Suggestion that people make points objectively and without the combative tone. It really doesn't help anyone gain knowledge or think.

  21. >Sorry, I meant to say that Jason repeated his points at least 50 times, several times a day, or broken up into smaller segments, but repeated constantly. More than 50, I think. That's more than enough.

    But can't we get off Jason and move on to other discussions?

  22. >@ Anonymous 1:50 PM

    No. Actually we do not prefer propaganda & pipe dreams. We favour honest, reliable & meaningfully investigative science. We prefer facts & honesty rather than meaningless rhetoric from individuals such as yourself.

    Perhaps you might like to attempt something along these lines at some stage? Or is this really too much to ask for? Surely not. After all you are meant to be the professionals are you not? Time to start acting in a more professional manner perhaps?

  23. >It would be nice if govcorp scientists behaved as professional scientists should and use clinically validated assays rather than assays that should work in theory

  24. >For your enjoyment — a magic trick.

    Jamie’s been charged with the task of making all non-HGRV hypotheses for the cause of CFS disappear.

    But unfortunately, Jamie knows little about science and has neither the ability nor the inclination to learn. And Judy Mikovits doesn’t have the time and/or inclination to ghost-write ALL her blogs for her.

    So when someone proposing a causal hypothesis involving something other than an HGRV retrovirus shows up on the blog, what’s a girl to do?

    Now watch closely folks. Here’s the magic trick.

    1. Don’t give any reasons why the alternative hypothesis doesn’t make sense, because that might lead to a reasonable debate and reveal your ignorance. Just say, “That’s ridiculous.”

    2. Deflect the discussion away from the alternative hypothesis itself and toward the personality of the person suggesting the hypothesis (e.g. by using words such as “rude” or “callow” or “obsessive” or “insensitive”).

    3. Make a big show of claiming moral victory by evicting the person with the “problematic personality” from the blog.

    TAH DAH!

    The problem has disappeared!

    SHE IS MAGIC!

    Is she magic……?

    Or is this the case of a arrogant, bold-faced, lazy excuse for a medical professional who’s far more interested in promoting a particular agenda than in getting at the truth scamming her audience?

    You be the judges, ladies and gentlemen.

    I know what my opinions are, but I would very much like to hear your thoughts.

  25. >Perhaps they should play a game of Russian Roulette. They get to test patient using their "in theory" assays and then they get to have a transfusion from those patients. But no takin any treatment after you get infected!

  26. >Clinically validated assays…shock horror! Followed by a rather sharp intake of breath.

    Surely you jest Gerwyn? They might end up with inconveniently positive results if they tried that..

    This is not how modern science works by all accounts. Silly old us to think that it might be otherwise..

  27. >Using diagnostically validated assays is the only way to prove that an assay was capable of detecting the target.

    Without providing supportive data those paper are no better than self report questionnaires.

    This is how real Science works. Most virologists are horrified at the actions of people investigating HGRVs.

  28. >This is all going around in circles again, repeating the same points over and over, and leveling personal attacks again.

    Those of us who are sick want constructive, objective discussions that are productive, and I mean we, non-professionals, who happen to live day in and day out with this illness and all the problems therein.

    This is about trying to find the cause and treatment for the disease that we live with and not about who can beat people over the head.

    It's losing sight of the main point here.

  29. >Anonymous said…
    For your enjoyment — a magic trick.

    Jamie’s been charged with the task of making all non-HGRV hypotheses for the cause of CFS disappear.

    But unfortunately, Jamie knows little about science and has neither the ability nor the inclination to learn. And Judy Mikovits doesn’t have the time and/or inclination to ghost-write ALL her blogs for her.

    So when someone proposing a causal hypothesis involving something other than an HGRV retrovirus shows up on the blog, what’s a girl to do?

    Now watch closely folks. Here’s the magic trick.

    1. Don’t give any reasons why the alternative hypothesis doesn’t make sense, because that might lead to a reasonable debate and reveal your ignorance. Just say, “That’s ridiculous.”

    2. Deflect the discussion away from the alternative hypothesis itself and toward the personality of the person suggesting the hypothesis (e.g. by using words such as “rude” or “callow” or “obsessive” or “insensitive”).

    3. Make a big show of claiming moral victory by evicting the person with the “problematic personality” from the blog.

    TAH DAH!

    The problem has disappeared!

    SHE IS MAGIC!

    Is she magic……?

    Or is this the case of a arrogant, bold-faced, lazy excuse for a medical professional who’s far more interested in promoting a particular agenda than in getting at the truth scamming her audience?

    You be the judges, ladies and gentlemen.

    I know what my opinions are, but I would very much like to hear your thoughts."

    Good grief..god give us all strength..what buffoon wrote this I wonder? lol.

  30. >"Despite good analytical sensitivity, the clinical sensitivity of these assays has been disappointing until quite recently."
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1904415/

    "diagnostic sensitivity and diagnostic specificity are calculated relative to test results obtained from reference animal populations of known infection/exposure status."
    http://www.ncbi.nlm.nih.gov/pubmed/9713892

    "Clinical validation of these preliminary assessments is then accomplished through field testing of appropriate clinical specimens to provide final specifications for test kit performance characteristics."
    http://www.fda.gov/biologicsbloodvaccines/guidancecomplianceregulatoryinformation/guidances/blood/ucm077067.htm

    "A graphical plot of sensitivity vs. (1 − specificity) or a function of true-positives vs. false-positives. "
    http://www.nice.org.uk/media/164/3C/DAPInterimMethodsStatementProgramme.pdf

  31. >"So when someone proposing a causal hypothesis involving something other than an HGRV retrovirus shows up on the blog, what’s a girl to do?"

    Hello, Abbie Smith. Welcome to the real world, not the world of magic. What is your causal hypothesis? Could it be the same as Jason, namely some other viruses? Which other viruses would you like to study and where will you get funding? Are you aware of all the studies from all over the world which indicate some viruses, and maybe bacteria and parasites, can cause symptoms like CFS? But then there's the study indicating that proteins in spinal fluid of CFS vs Lyme disease do not look the same. And then there are the few patients who don't have EBV or HHV6 or CMV but they are still sickies. Meanwhile, we wait for Dr. Lo to come out and talk about what he found – maybe XMRVs first cousin in the retrovirus family?

    Please keep posting science here. I promise I won't bring up a question about whether God is composed of gag. I think we would have difficulty getting the science done on that one – tougher than the cause of CFS. You know the story is we were made out of dirt – same minerals as found in dirt, and it fits the science albeit maybe not in a 24 hr day timeframe. That "evening and morning" thing could have been poetic. But I digress….

  32. >A couple of thoughts:

    Anonymous @ 3:52, on the nature of "threats": the DISEASE is the threat. We are the messengers, those hapless folk that everyone loves to shoot. We are shouting out to educate, bear witness and convey our highest wishes that research/medicine listen and show they've heard so that more relentless suffering might be prevented, or at least alleviated. At this point in the game even though we might be lying flat on our backs we still hold the higher ground. Who would you take more seriously, the sick person suffering at your feet or the guy kicking the sick person?

    You could shoot every patient, silence the lot of us and the disease is waiting. Maybe for you, maybe for someone you love, maybe neither – the disease doesn't care who the next host may be.

    This is not a threat; this is about the fact that anyone might contract this illness. It's about the math – like a football pool. Care to place a bet? The stakes are high. Especially for lab personnel and health care workers – a careful look at the history of outbreaks of M.E. demonstrate that risk quite clearly.

    Anonymous @ 10:47, Yes the medical community finally got together to figure out what they could about MS. I would remind everyone about the fate of (mostly women) who were incarcerated in mental hospitals with the label of "hysterical paralysis". Some of them didn't get out of those institutions until the arrival of MRI scanners that showed the damage to their brains – in the 1980's. It sounds terribly familiar, especially if you know what's going on over the pond: being "sectioned", which is the word for the white coats coming for you, locking you up and exercising you to death, all the while exhorting you to give up your "false illness beliefs". To Simon Wessely and his ilk: we sure do wish Afghanistan was as terrible and dangerous as M.E. research. Many mothers would appreciate that.

    Yes, there's anger and frustration. What is it that's so offensive about saying "ouch" when you're being relentlessly dismissed, discounted, ignored, ridiculed and outright attacked by self righteous researchers/medical people who will actually say at times that they don't "believe" in M.E.as if we're discussing the tooth fairy?

    Again, I say that I think it would be great for Jason to go start his own blog. Too bad that would take away the fun factor that all bullies and ideologues thrive on – it's just not as juicy and dramatic an option. No brownie points, either.

    However,I'm beginning to see a good, and, I'm sure unintended, effect of his (and like-minded) posts here. We see you. You are becoming very identifiable, Anonymous or not. As a result our voices are getting stronger, more practiced and more confident in the face of the sneering. Good on us.

  33. >After posting this web address, I noticed the abstract had already been noted. It didn't seem to make much of an impact as the quarreling continued. I, frankly, see the suggestion of this being an autoimmune disease interesting.

    I was on a type of prednisone several years ago for an unrelated problem and had the best 10 days I've had in the 18 years I've had this dreaded disease.

    Interesting results. I hope someone of the scientific persuasion follows up.

    Sharon Davis, Ph.D.

  34. >Rituxan has been used low dose to treat rheumatoid arthritis. It has been tested on lupus and did not work. It is a risky drug. At this time we don't know why it improved symptoms in some cases of cfs. I used to think it worked in RA because the so-called autoimmune diseases were caused by intracellular infections such as mycoplasmas which may infect B cells, and Rituxan kills B cells. If you do a search for Rituxan and AIDS you will also come up with studies relative to HIV. But who knows. At this point Rituxan, like steroids, may be too dangerous to try when we really don't know what we are doing. Just my 2 cents for what it is worth. I've been around this all too long. I just want a miracle cure.

  35. >@kkrizani

    The death threat comment was a joke so that no one else can step in and make up a lie about having received one. Have you noticed how often this is being used as a smear tactic?

  36. >@Kathy D., thanks for pointing out that Jason has been posting in the blog comments for a while. I agree with you that if you read those, you wouldn't have any doubt that Jamie was right to call him a troll.

  37. >ERV did us all a big favour and I sincerely thank her for it. Unfortunately people are still listening to quack amateurs who are so removed from reality that, despite having never studied virology, they are trying to tell long-time professional virologists they are wrong. Time for a reality check, "Gerwyn" and the other quacks : take your egos elsewhere, although no internet forum seems capable of bearing your arrogant quacking for long. If you want to see quality science in action then check out the CANCER specialists in Norway who have great data with CFS and the drug Rituximab (Google "Fluge Mella rituximab"). By the way, to all the quacks out there, this study has NOTHING to do with retroviral infection – you're dishonest to suggest otherwise and you know it – so keep your amateur claws out of it. These proper, professional scientists might just undo some of the huge damage inflicted on CFS research by the last couple of years. Dr DJ, I sincerely hope this Norwegian data may eventually end the nightmare for you and your daughter.

  38. >ERV did nothing.

    She falsely accused Frank Ruscett and Judy Mikovits and posted images that could not have come from the published gel or slide. Sunshine laws will allow people to find out the author of the images SHE posted.

    John Coffin reviewed Lombardi et al. for science, he and they knew AZA was used, but didn't think it was germane to the study. John Coffin and the editors of Science had the labels changed to change patients codes and use of AZA.

  39. >The study from Norway supports the HGRVs hypothesis for ME/CFS, as MLVs infect B cells. The problem with the study is the unscientific measures used, including questionnaires and assays optimised to VP62/XMRV, that would have no chance of detecting HGRVs. This is the same issue with the blood working group. They cannot claim to be looking for other MLVs, which is an off way to say human viruses as that is the term for mouse virues, when the PCR conditions are only optimised to VP62!

  40. >Glad people have picked up on the Norwegian Rituximab study but if (as some are suggesting)this study points to ME being an autoimmune illness, how does that explain the cluster outbreaks that we have seen over the years? No, there's still something missing here.

  41. >The Rituximab study points to ME being caused by a MLV-related retroviruses. There was no sign of autoimmune antibodies.

  42. >The Rituximab study should be redone this time using objective measures and assays that are optimised to HGRVs, not VP62/XMRV.

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