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
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.
>You know, I mean no disrespect here at all. But I actually would have liked Jason to review the literature and come up with some commentary. It would have been an interesting exercise, a good glimpse at how a newbie researcher approaching CFS gets a "first take".
>Khaly,
Write to him on his blog. He posted the link in a comment. Maybe he will do it on his own time. I didn't feel that his offer was genuine. He had an agenda going in. Too much stress for me. This blog is about treatment.
Jamie
>You sound real clear about all the hate crud now, Jaime. Sounds like you are out the other side. Good!
Adrienne
>You are truly amazing Jamie. You are a lifeline and a ray of hope for many of us. We are here. Mostly wondering what to do next. Nothing that has been said about CFS has ever rung as true to me as retroviral, I cannot and will not give up that hypothesis yet. I know nothing compared to many, about what I live with day to day, but I do at least know that I am not a victim and that there is still hope for me, maybe not where I thought it would be, but I am trusting that I will be led there.
Your true voice rings out loud and clear and the naysayers are not worth the time or stress.
best to you,
Jackie
>You are an amazing person as well as an excellent writer, Dr. Deckoff-Jones. I'll bet you are an amazing healer as well. In fact, I know you are because the words you have been posting have had a healing effect on many readers who are suffering from M.E.
I have noticed that the more honest and the more open you are the more you act as a lightening rod, getting pummeled by throngs of people who are angry because they are sick or people who are angry because they think M.E. patients aren't really sick–or whatever. They turn their rage on you. I think they turn their rage on you because your honesty forces them to confront their own self-deceptions and dishonesties. This isn't easy. I've experienced it a few times myself while reading your blog. When I discovered that my XMRV/HGRV test from VIP Dx was invalid, I learned that I had been using this piece of worthless paper as a life preserver. It was the first bit of hard evidence that I was suffering from a real disease, not suffering from It's-all-in-your-head. No wonder I fell apart when I discovered my test was meaningless. Still, I would rather know the truth than live in the unreality of false beliefs. I need to know the truth in order to find my way out of illness and into health.
I am grateful to you for your honesty and I welcome the truth you tell, even when it provokes painful changes in my own life.
I hope you have some realization of what a wonderful, healing experience you are creating for those readers who are open to it. For those who read and are not open to it, all anyone can do is wish them well and let them go on their way. As Jonathan Swift said, "There's none so blind as they that won't see."
But for those of us who are open to the experience, you are providing the opportunity for healing. How can we possibly find out way out of this maze of illness unless we are honest with ourselves about where we are?
So, please, for those of us who are receiving healing from you through your words, please continue.
Patricia Carter
>Dear Jamie,
I always enjoy reading your blog posts, even when I don't agree with everything in them. Most of the time I do agree with you, or find what you say has a ring of truth to it. Good for you for distancing yourself from the disruptive sort of communication. As I was reading this post today, I thought of something I heard when I was taking a seminar on group process. The person leading the seminar said a common game in groups (any group) could be called "shoot the leader". When someone emerged and spoke up about X (by this I mean the universal variable, not any biological thing), one or more people also emerged to shoot down the first person. It happens over and over again, seems to be hard-wired into human nature and the dynamics of people in groups. Keep speaking (or writing) your truth as you see it. I value your point of view highly.
>P.S. I don't really need to be anonymous, I'm zenmom on some forums, mmorrison on others. I just don't happen to have any of the accounts listed under "Select profile" or have a web site URL. So, "Anonymous" it is!
>Thanks for continuing to write your blog. It's like radio free america for ME patients.
We just want to be free of this oppressor and need to keep some kind of hope alive.
>Not for the first time, your blog made me want to cheer. It is difficult, but not thankless, being an island of sanity in this maelstrom. We are here, we are grateful and we are cheering: Brava!
Christina/JustME
>*sigh*
I guess Jamie doesn't like to let things die as they should. But for fairness sake here was my first email to her:
Hi Jamie, this is Jason.
I know we don't see eye to eye here, however I can think of way we can
meet in the middle, as you suggest.
An idea I had was to write up what I think the current state of
research concerning and infectious etiology for CFS. This would almost
be a "guest" post on your blog, explaining my viewpoints. In general,
I feel science does a horrible job of communicating to the lay public
and this is evident from almost everyone that posts on your blog. This
will also be an opportunity to answer lots of questions people have
made on your blog. Lots of people are confused by the virology and
XMRV really threw them for a loop.
Now to be clear, and to relieve any apprehension you may have, I will
not attack you. If I disagree with you so be it, but it will not be to
lash out at you. I will also email you what I write first so you can
decide either to post it or not.
Keep in mind that my research experience is in retrovirology, not in
CFS. I will not talk about CFS and other causes, just CFS and the
possibility of an infectious cause. Retroviral or not. This will take
some time. I will need to read lots of papers to bring myself up to
speed and form an accurate opinion. I'm not sure of a time frame since
my life is so busy with my current research, new baby, and the
occasional batch of beer. And lastly, I have to have some assurances
this will not be published as fact, it's just my opinion and is not
peer-reviewed.
What do you think?
Jason
—
Jason
>Here was her response. Very nice I thought. We can come to agreement:
If that was really the reach across the isle it seems, and you have no agenda other than to look at the science, I would be honored to host a guest blog by you.
I didn't understand what you meant by this:
I will not talk about CFS and other causes, just CFS and the
possibility of an infectious cause.
If you would like to have a discussion about why a gamma retroviral etiology is such a good fit, learn something about the pathophysiology of the disease, that would be wonderful too. I think it would inform your research, make more of the time you put into it.
—-
There was more at the end of this email, but it was a patient experience that Jamie wanted to share with me. I figured best not post for confidentiality reasons.
Jason
>Here was my second email:
My only agenda is to look at the science objectively, which I took a
beef with many of your posts. My personal feeling is that science
shouldn't be used to extrapolate conclusions where its not warranted.
This is especially true when you are dealing with a disease that has
no known cause and induces the suffering, emotionally and physically,
of millions.
> I didn't understand what you meant by this:
> I will not talk about CFS and other causes, just CFS and the
> possibility of an infectious cause.
I am not trained in CFS/ME, nor am I a doctor. However, I am a trained
virologist and can comment from a virologist's point of view. In that
sense I won't talk about anything else other potential causes that I
know nothing about.
Keep in mind that I will keep this strictly to the science. I do you
realize that you suffer from the condition and I'm very sorry for
that. I'm sure you see hundreds of emails just like the one you just
listed below. However, I what will write will not include
interpretations influenced by emotion. I will survey the data of an
infectious origin to CFS and give my opinion. I also give my opinion
as to why retroviruses (simple ones such as gamma) are not likely to
cause disease.
Of course in the end, you don't have to post what I send you if you
don't agree with it, after all its your blog and you can do what you
want. All I ask is that if you do post it, you post the whole thing
without any changes. I will promise to keep my analysis fair and
impartial.
Why am I offering this you might ask? One reason is to provide some
objectivity to the science. It is clear that you have been affected by
this disease, and thats ok. Another reason is to respond to posters
that really don't know the science and are therefore making wrong
conclusions. But the biggest reason is my personal feeling that basic
science research does a horrible job of communicating to the lay
public, especially when it comes to a disease like this (autism is
another one). Hopefully with this post I can make a dent in this
problem.
Keep in mind this might take a while (maybe a week or two), I have
lots of papers to read and review.
—
Jason
>Jamie then sent the email she post above and here was my reply:
I can assure you that I'm a very fair and objective person when it
comes to science and forming opinions. This will not be about proving
you wrong. I will also refrain from writing my views about Mikovits,
since they are VERY different than yours. Here are some themes I will
touch upon:
1) Brief history of viral component to CFS.
2) The potential for a retroviral cause (which in my opinion is low,
but I'll explain why).
3) Why the furor over XMRV (from patient side to bench side).
4) Epidemiological data on viruses and CFS (or viral symptoms).
5) My hypothesis for a viral cause to CFS (if there is one).
6) Future of research and the impact that XMRV has brought to FCS
community (good and bad).
>And finally, for everyone that thinks Jamie is a saint, here is her last email to me:
That's OK, Jason. Save it or start your own blog. I'm wrong. You're right. End of discussion. You've already made up your mind. My readers don't need to hear it. There's enough of it in the media. Actually they already have heard it from you in the comments. I guess the divide will not close now. I still have to treat patients in the present and you can keep doing your little absence of proof experiments.
Frank Ruscetti looked me in the eye and said "We'll both be dead." I guess he was right. Thanks to you and other narrow minded scientists. You think I was so mean to poor Dr. Coffin for suggesting there was something wrong when he said research should stop, so my daughter has to live in hell for her whole life? Oh well, "maybe it's another retrovirus", as an after thought. Nothing important. And you have a new baby? Who is 'souless'?
It will be hard for you to make any significant discoveries with your argumentum ad ignorantiam, so I wouldn't think you'll accomplish much, but good luck on your future endeavors.
Feel free to share our correspondence with Dr. Racaniello, ERV and the rest of the boys.
PS. 95% of the people reading my blog think you are a "snot".
Jason
>Re: Jamie's reply
That pretty well sums it up for me and the friends and family I share Jamie's blog with.
And snot is putting it kindly and mildly. Certainly less offensive and cutting than most of the things patients have been called.
>All in all this whole drama and saga that I unwittingly started and Jamie decides to perpetuate is really astounding.
"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."
Unfortunately Jamie you have it all wrong. There is no ivory tower just someone doing honest research on a really cool virus. Nothing hit me, as you say, I'm not phased in the least. Also, you are wrong about the blinders, I took them off to contact you. I wanted to learn the disease more and offer my expertise in virology.
But you decided against this. You were opposed in seeing my objective scientific opinion. Apparently, you are the one with blinders and are so focused on a retroviral cause you lose the forest from the trees. I offered to you and your readers to bring the forest back in focus a bit.
I'll state it again as I always have: I posted on your blog because your interpretations of retrovirology is flawed and you often stated them as fact. I'm sorry if this upsets you, I'm just telling it like I see it.
In the end the whole affair is upsetting in one particular manner. I feel that basic science research does a horrible job of communicating to the lay public. People that don't understand the science of a horrible disease often lash out at researchers when they fail to communicate properly. I was hoping to correct that here a bit.
Unfortunately, all this back and forth is truly nonsense. It was a mistake to come forward and identify myself. It was a mistake to email you and propose my offer. Your continuous accusations of me and my "ilk" not caring about patients and that we only care about a "proof of absence" experiments. Your sense of the research community that is against you and CFS is so warped it makes me sick.
Jamie, the only thing you have accomplished is push me further away from looking into CFS.
Congratulations.
I guess I head back to my ivory tower and entertain my test tubes and petri dishes.
Jason
All the best,
Jason
>Sigh is right, Jason. You aren't hurting me by posting the entire correspondence. I wouldn't have done so out of courtesy to you. I think my readers know quite well that I am not a saint:).
Your response to my letters was really cold and didn't offer anything productive. What you considered a fair response, actually hurt me, if you care. I understand that you don't understand what you did wrong. As for your assessment of the literature? I've read the literature and people far more knowledgable than you have read the literature and the answers aren't there, beyond hints that need to be pieced together like a jigsaw puzzle. So why waste your time? This blog is about surviving the disease with as much dignity as possible.
Your mission was/is only to prove me wrong, correct my false beliefs. Why should I give you a forum when first you insulted me and then the reach was all one way? Your responses never indicated any willingness to open your mind beyond the troll you were when you first descended. Now you are coopting all the energy here. Go away, please. If you do in fact want to put the energy into the problem, and write up your ideas, I will post, if I think there is value. Value means adding something to the discussion. Not a review of why we are out of luck. We already know that.
Jamie (posted before reading yours)
>Jason, why the *sigh* when you are the one insisting on the last word? If you want to post your "paper" on your own blog, go for it. Jamie, as I understand it, was asking you to look at a specific body of evidence/work that she believed (and I think it is a safe assumption), you were not familiar with and entertain the possibilities before writing a response you could have written a week/month/year/decade ago. Whether you recognize it or not, your response could easily be interpreted as a condescending and entirely dismissive, "thanks, but I've already got it all figured out and will happy to enlighten your readers". You accuse Jamie of coming from a place of arrogance when she acknowledges relentlessly that she may be wrong. Try coming at this disease as if there is something you could learn from it, so that you can contribute something meaningful to it's treatment. You have completely missed the missed the point that this community is not an appropriate place to try to sort out whether or not Jamie was rude to you. People have more Important things on their minds. If your concern is the science then start a new blog. Many readers have said they would read what you have to say. But otherwise, enough already.
MSD
>@Jason
"Jamie, the only thing you have accomplished is to push me further away from CFS research. Congratulations!"
The fact that you write this here, in a patient community, is just so outrageously narcisistic and self-centered and egomaniacal – I would like to propose a new song (and I am not even in to the whole song thing)
Your So Vain by Carly Simon
MSD
>Jason was paternalistically trying to correct Jamie's "false *scientific" beliefs", and was surprised that he got a reaction. Jason, you have no idea how many snots we have already encountered before you. You clearly have no idea how much abuse the average patient has endured. We therefore have no tolerance for any more of it, from anyone. Thanks, but no thanks. We do not need to be straightened out by you.
>Thanks Jamie for continuing to post despite all it must take out of you. Interesting observation that the veterinary profession maybe over represented. Myself, being a veterinarian, and one of my technicians both currently have ME. We became ill within 6 months of each other. My very first symptom and diagnosis was Meniere's so Jason, I feel for you. Still have that one on top of all the other glorious ME laundry list.
I also have a 8 year old daughter who thankfully is at this point completely healthy. I was 1 week post-partum when I came down with my flu from hell that has never left.
I would love to see some veterinarian researchers take part of this. I would not be surprised if there is an underlying zoonosis occuring. Again hello to some good epidemology? History of cat bites/scratches, pets, etc., though that may take away a retroviral theory..but who the heck knows. We have a great example in FeLV as another gammaretrovirus to learn from. This is a particular researcher I have in mind:
http://vet.osu.edu/lairmore-michael-dale
It's a fantasy, but it would be nice to see some funds going to veterinary researchers for this too. After all, they are on the front lines of public health and zoonosis.
Sincerely, Tracy Waechter DVM
>For all who come here to harass, belittle or argue their so called scientific points of view. This is what you should fear as it could be coming to a family near you. Here's a little of my reality:
When I was 3 years old my sister and 2 of my brothers sat on the hospital bed that was in the living room of our house. It was my brothers sick bed and where he laid while he watched us go out to play. I remember we were all crying on that bed as we were told that my oldest brother Daniel would not be coming home again. He had died from complications of leukemia during the night. I remember the first twitch of my father's right hand when at 42 he had just been diagnosed with Parkinson's. His wife just 10 years earlier diagnosed with MS. I take my father now every 10 weeks to have botox injected into in eyelids because he cannot keep his eyes open due to his illness. When his eyes are not open he cannot feed himself. I sat during every appointment, radiation treatment and surgery my mother had for breast cancer. I was with her when she received her diagnosis. I saw the fear in her eyes. My brother next in line to the oldest had a heart attack at 44 years old that was brought on my Graves disease. He lost 20 lbs within a couple weeks. My sister was recently diagnosed with fibromyalgia and along with it congestive heart failure. I became ill at the age of 37 after contracting pneumonia. I had a gradual onset of what they call fibromyalgia in the area I live. I also have tachycardia and my heart rate has made it up to 180 bpm at my worst. I've had this illness for 18 years now but have somehow managed to continue working the whole time. It is very difficult and I'm not sure how I make it through the days. I collapse at home each night.
I've had access to very good medical insurance, and finally after all these years I have a very understanding doctor. She believes that this illness is neurological. She see's that I am barely able to move when I'm in her office. Most times I can barely walk. I'm very thin also by the way. My doctor sees many like me and as a physician she get's to see this illness on a daily basis. There are many of us in the area I live. She actually asks me what is helpful because she knows I am a long term sufferer. She asks me so she can gain knowledge of what has helped me even a little, so she can hopefully help her other patients. She get's it. I've tested postitive for HGRV in an NIH study. A retrovirus makes perfect sense why I've never gotten well and believe me I've tried it all. My family history is very telling as well especially since we all have either cancer or a neuroimmune illness. Gammaretroviruses caused both neuroimmune illness and cancer in mice. Why would we be any different?
>I think that Jamie has been incredibly patient and tolerant of a somewhat destructive and very self-centered person for several days and replying to the same insistent, angry posts constantly.
I commend you for doing that. I lost my patience after about three rounds of the same persistent statements. And I also commend you as a woman for putting up with the unbridled arrogance that was displayed non-stop for days.
I do not know anyone, including myself, who could do that. But you tried several times to persuade a very rigid person to be open and learn some things that are not in textbooks –yet. You did everything you could and more.
Your blog message is very moving. To have this disease and then see one's child come down with it sounds awful.
Your blog is interesting I have learned some things in a short time, and I surely like the community of people who suffer from this ailment.
And because you have the disease and are a compassionate person, you know what living with this illness is like which helps a lot in having the drive to figure out the mysteries here.
There is a blog of a young woman who is in her mid-to-late 20s who has had this disease for 5 years or so. She had to quit her job, and spends her days in one room with her laptop and books. She says she is getting progressively worse, and she thinks her lifespan will be cut short due to this disease, and she's enjoying life from day to day. She is so young to have to do this.
For her sake and everyone's, someone must find the cause and treatment.
If it's not Judy Mikovits (and I'm not mad at her; she did what she thought was best), then hopefully it will be someone who's studying the disease now. Maybe Ian Lipkin will get somewhere. May Drs. Alter and Lo will find something more encouraging.
Meanwhile, this is a nice, informative blog. I hope no more angry non-CFIDS sufferers will need to vent here. It drains the heck out of us, and for us — at least for me — once I see the stress, symptoms start flaring up and worsening.
>@Jason
This is your list of themes you would have written about.
1) Brief history of viral component to CFS.
2) The potential for a retroviral cause (which in my opinion is low,
but I'll explain why).
3) Why the furor over XMRV (from patient side to bench side).
4) Epidemiological data on viruses and CFS (or viral symptoms).
5) My hypothesis for a viral cause to CFS (if there is one).
6) Future of research and the impact that XMRV has brought to FCS
community (good and bad).
Thing is I'm not sure why you think you are able to comment on some of those, or why they are relevant to HGRV research that is happening. Take 3, why do you think the furore over XMRV is about patient side to bench side at all? Are you truly aware that scientists, including virologists, also have ME? Many people commenting are qualified and informed. Don't pretend that there are patients (uneducated) and scientists.
If you do have your own hypothesis, I would be interested to hear it. Firstly, because you think you can come up with a new one, when at this time there is only one.
Finally why are you saying XMRV? The host range of the viruses discovered are not proven to be xenotropic, cannot be VP62/XMRV and the gag sequences are polytropic. Unless you are an oracle, you cannot possibly know what those isolates are. So why are you saying XMRV?
>@Jason
Do you now understand that all the 00 studies used VP62, high stringency PCR conditions and annealing temperatures only capable of detecting VP62 sequences? They were not looking for HGRVs, which is the finding of Lombardi et al. and Lo et al. This includes the blood working group.
There are 2 HGRV paper and both are positive.
>To be frank I think there is rather a lot that Jason doesn't seem to understand. Including how to spell, punctuate, conjugate verbs and decline nouns correctly. His premature & illogical belief that HGRV research relating to the field of M.E. is now a dead end seems rather absurd also. Under current circumstances.
>Jason, I hope you are still reading this blog. I thought your proposal reasonable, and potentially useful, and I think many would. There is a forum called Phoenix Rising with a very active message board and a wider audience than this blog, if you desire sn interested patient population. It's even possible though I can't speak for him that the founder, Cort, who has done a lot of high quality blogging qua reporting, would host your thoughts on his blog. Either way you'd be welcome. I just read a fabulous two part piece on/with Dr. Peterson, part of it by a patient, and the other an interview by Cort. Peterson states why he moved sway from a retroviral cause himself. He finds NK function the most reliable parameter, and apparently has some collaboration going with Ian Lipkin as well. So don't give up on your proposal as many would welcome it.
Jamie, it does seem a contentious arena. On the other hand your blog indulged many times in personal attacks on individuals and in general attacks on professions. This set a tone for the blog. A different blog might have stuck to the science/hypothesis and perhaps shared some of those terrible patient stories. There are other ways to get attention that still take a high road. So I do believe your own anger and freely cutting down others you disagreed with gave implicit permission to other posters to say what they feel. So it's psr for the course.
Jill Neimark
>Yes, I feel a move over to Phoenix Rising would be a splendid idea Jason. Preaching to the insidiously misinformed might prove more fruitful for you I feel. Nevertheless thank you so much for your contribution here. Priceless in so many ways.
>Jason, hello, I have ME. If you would watch these DVDs of a recent medical conference on ME I would be glad, or just read the works of the presenters http://www.investinme.org/IiME%20Conference%202011/IiME%20International%20ME%20Conference%202011%20DVD%20Orders.htm
>@Jill Neimark
Do you get paid to be the authoritiy on tone? I personally don't like your tone. What is tone anyway but a feedble excuse to label another in a way that would stop others from hearing them.
Even Peterson now recognises that the research found HGRVs.
>XMRV is not the only viral-hypothesis in the scientific literature, for crying out loud. Narrowing it down to "XMRV or BUST!!!!" is not helping. I am really angry that you want to force others to look into XMRV, while you are not able to really take a look into other theories, readily available in the scientific literature. Is it an American thing, not to consider what others have found? In the eighties it was all Epstein-Barr in America, now it is all XMRV, while for example many in other countries have suspected Enteroviruses for long. Why was this literature not used in America? For example, did you read "A. Melvin Ramsay – Myalgic Encephalomyelitis – The saga of the Royal Free disease"? Do you even know about the available research? The finding of VP1 protein? Yes, it is not much in the scientific literature, yes, it could all be wrong. But do you even know it exists?
Go do your homework, before you want to dictate others to do theirs.
>Why do I think someone is going to claim they have had a threat next? That is the modern tactic. Ok I will do it first to defuse the situation.
Please can people stop threatening Anons. Thank you.
>@Tony Mach
Oh for goodness sake..please catch up! Think HGRV.
You yourself seem to be one of the people narrowing down research parameters, in the extremely important sphere of retroviral research, do you not?
I suggest you might wish to indulge in some homework on recent developments yourself. Just to achieve a more balanced view on the subject.
>HGRVs Tony!
>A retrovirus is the only option re viral causation of ME as it is the only entity capable of producing the symptom complex of ME.
I would welcome an alternative parsimonious consilient hypothesis based on empirical measurements.In short an alternative scientific hypothesis. If Jamie has actually driven Jason away from research into ME then I would suggest that she has done the ME community a great service.The minimum requirement of a scientific researcher is an open mind and to actively challenge preconceptions. Jason fails both tests
A scientist would also realise that the results from any assay whose clinical sensitivity has not been established is completely meaningless
>Just to clarify a point re the term XMRV
XMRV as defined by john Coffin as being the DNA sequence purportedly isolated from patient VP-62 in the Urisman et al study of 2006 does not in fact in nature.It is a composite created from DNA taken from different tissues and different patients
The existence of gammaretroviruses infecting people with ME and causing the cytokine and chemokine patterns associated with activated microglia is a completely different issue
Whoever now refers to the term XMRV as a single entity is now displaying scientific illiteracy.
Tropism is merely a measure of host range and it is not yet known whether these gammaretroviruses are capable of infecting and replicating in any other species apart from humans
>" I concede the URL is obsolete."
and a link to
"Why Most Published Research Findings Are False"
Wait a minute! Are you saying you moved on from XMRV?
>@All with XMRV-delusions:
Show me a lab that can distinguish patients from non-patients using a XMRV-test, in a blinded test. Please.
>Anonymous said…
@Tony Mach
Oh for goodness sake..please catch up! Think HGRV.
Anonymous said…
HGRVs Tony!
And in the eighties it was "IT IS EPSTEIN-BARR!". Not convincing, no matter how often you repeat it. It is viral in origin, that's I'm 99% sure of, yet it isn't EBV and it surely isn't XMRV.
>And calling it an Human Retro Gamma Virus (HGRV) surely does not make it a human pathogen. Calling it an HGRV instead of XMRV is quibbling, not science.
>No, strike that, it isn't quibbling, it is political. You want to force the discussion in the direction that we talk about XMRV as if it were a human pathogen, no matter what the science says. Now, if it were a human pathogen, I would be all on board, against the old boys clubs, against big pharma, against idiotic doctors who believe in psychosomatic-bullshit, against bureaucrats wbo know numbers and not people who are sick – but XMRV (or what you call HGRV) IS NOT A HUMAN PATHOGEN, no matter how often you repeat it.
>Tony I do not wish to be rude but you appear to be missing the point in your above posts.
Calling it an HGRV (Human gammaretrovirus) instead of XMRV is not quibbling over nomenclature, it is a distinction based upon now established science.
Whether or not the detected HGRV's (Lombardi et al & Lo / Alter positive papers) hold a pathogenicity in relation to M.E. / cfs is yet to be established. Which is precisely why further, properly conducted research is now necessary.
This is the whole point of where everyone now stands, or at least where everyone should now be standing, in relation to this important field of research.
How can anybody disprove a perfectly valid & reasonable scientific hypothesis, in this case that hgrv's may be pathogenic &/or have an important role to play in relation to M.E./cfs, without even bothering to honestly, properly & openly test the theory?
Simple answer is they can't..despite, dare I say it, all the twaddle & misinformation out there to the contrary from certain quarters of the scientific establishment.
>@Tony
How do you know the host range of viruses that have not been fully sequenced? Are you a fortune teller?
The gag sequences are polytropic.
>A psychological comment on Jason's and others' attacks: One becomes a lightning rod, a leader who is "shot down", when there are others who are functioning under dishonesties and deceptions. The awareness of these dishonesties comes up in the potential attacker, to be seen, realized and integrated. Only this doesn't happen. Instead there is a vigorous, immediate projection onto the "target", the one who stirs up an awareness of one's own dishonesty, deception, limited thinking or ethics. I have been attacked like this quite a few times when I present an honest view which is unwelcome, which upsets the status quo, the current power structure.
I suspect that Jason didn't fully realize how he was a wolf in sheep's clothing, purporting to being scientifically objective and neutral, while actually carrying onboard a destructive purpose. Nevertheless, he was responsible for being more self aware.
The truth isn't always comfortable and doesn't always fall into the current thinking or power structure. But the truth is what is most important. It is the only sound basis for making any progress in meeting our challenges, and this is true in every sphere of life, in my opinion.
>Call it XMRVsssss
>You cannot say XMRVsss, because the host range is not known. The gag sequences are polytropic, but the host range of some of these viruses may be xenotropic, polytropic, and others.
>Dr. Peterson looks for NK function? Hum, interesting. So does Dr. Deckoff-Jones. Isn't low NK function a sign of HIV? Could there be a connection between a retrovirus and low NK function?
I have to add, in a slight defense of dear Jason, I am a disabled former teacher. My best and most creative students were poor spellers and not so crazy about grammar and punctuation. My brother is a PhD physicist and totally cannot spell. Well, he can spell easy words. I don't spell so well either. I guess that means I am smart and creative.
Jason, keep looking for an underlying cause of your Menniere's label. I suspect you realize that labels are meaningless without causes.
>J Natl Cancer Inst. 1984 Jun;72(6):1349-56.
Suppression of natural killer cell activity by Friend murine leukemia virus.
Moody DJ, Specter S, Bendinelli M, Friedman H.
Abstract
BALB/c mice infected with Friend murine leukemia virus (F-MuLV) evinced a decreased natural killer (NK) cell activity to susceptible target cells. This suppression increased as the interval between infection and assay was lengthened. The decrease in NK activity due to F-MuLV infection was partially reversible when spleen cells were pretreated with interferon before the cytolytic assay. The ability of F-MuLV-infected splenocytes to bind to target cells was unaltered, indicating that the defect was in the lytic phase of NK cytolysis. When mixed with uninfected spleen cells, F-MuLV-infected splenocytes suppressed their NK cell activity. This suppression was associated with a nylon wool-adherent cell population in the F-MuLV-infected spleens.
>the term xmrv refers to the vp-62 clone
gammaretrovirus or gammaretroviruses is the correct genus
human gammmaretrovirus is acceptable
in my opinion Tony Mach has a PHD in missing the point
>My take on the Jason v. Jamie debacle:
Jason is not a monster, or even a major "snot." He is a young, somewhat callow scientist who was drawn into some interesting research (on XMRV), when he doesn't happen to have a major or long-standing interest in the illness to which it was being attached. He is good-hearted and open-minded enough that just because he has come to see XMRV and HGRVs as a dead end, he hasn't written off the patient population. He still believes we have an extremely serious, biological illness. Bless him for that.
On the other hand, he hasn't been with the field for long enough to know what we as patients have been through with docs and scientists. He is a little condescending on the science front, because he probably really does know more about retroviruses than most of us on this blog. But it feels presumptuous to most of us for him to step in and offer to give us a "state-of-the-art" report on research on our illness, given that he is an admitted novice in regard to ME or CFS or whatever folks want to call it. He knows lots about retroviruses, but not much about the history of ME research, and many of us know that history much better than he does, even if we don't all have a microbiologist's view of it. That's what makes him seem like a "snot," I think.
I'm not clear that Jason has much reason to doubt the hypothesis that a retrovirus is at the root of ME/CFS. Without knowing an awful lot about the illness, it seems a stretch to be ruling in or out possible causes. I have to say that I wonder what reasons he would give for thinking this an unlikely cause. I wish we could find out here on Jamie's blog, because I'm probably not going to wander off to read a blog by Jason, although I would be idly curious to hear from him here.
I understand Jamie not wanting to provide a big platform for someone like Jason, but, Jamie, I still don't understand why you have taken such extreme offense. He's just a young, moderately arrogant guy who is eager to share what he believes he knows. And he didn't, by the way, ever call you a soulless (or souless) freak. If you go carefully over the first passage where he uses this term, and then his later reference to it, you will see that what he was saying is that YOU seem to think the HE is a soulless freak. Later, when someone questioned whether he was referring to all patients, he said that he only meant you…only meant that YOU were treating him as a soulless freak. Which is a bit true, honestly. I wish you would stop accusing him of calling you a soulless freak. The only aspect of his tone that seems out of line to me is that he is more condescending than is warranted. Mildly disrespectful. He clearly does not think you (or anyone else) are a soulless freak or anything like it.
Anyway, you are very brave, Jamie, for putting yourself on the front line as you have and taking all this flak. It must be stressful and I wonder if it is good for your health. I know I would fall apart under the criticism and occasional hostility. Anyway, thanks for providing this forum, and for taking the heat.