Although the personal questions in the comments of the last blog were asked very rudely, I will try to answer them anyway. I have represented myself as an open book, and I truly am, even though it gets me in trouble, as witnessed by the tone of the questions. Most of this has been said before, but things have changed, and perhaps it needs to be said again, from our current vantage point. So, I’ll give it a go.
I am not trying to persuade anyone to take anything. I share my reasoning, with references, within the limits of my writing ability. I intentionally report before I know the outcome so that it won’t be seen as my pushing a particular protocol. I am in the same boat as everyone else. I don’t know what to do to fix it. I don’t believe that anyone else does either. Arv’s are only one of the treatments I have written about here. I am sharing my thoughts and experiences in real time.
This is a blog. Opinion. If you read it carefully, there are inconsistencies. I even reserve the right to change my opinion from time to time. I try to summarize occasionally, but yes, a “casual” reader might come away with something I didn’t intend. I am not sure what to do about that. I cannot recapitulate the entire blog each time I write. It is an ongoing discussion, not “the truth” at a moment in time. Almost everybody gets that, I think.
I am endlessly surprised that my opinions are so controversial and can evoke such ire. Most of it seems common sense to me. It is incredible, and very telling, that there are actually people that want to restrict my freedom of speech! Why does anyone care if others find my musings useful? I am not telling anyone else what to think. I have said repeatedly that I could be wrong about anything. If I were to say nothing until everything is scientifically validated and I was positive, I would never say anything at all. I am learning as I go, as is everyone. For some peculiar reason, I seem to need to write, and some people find it helpful. The blog is the best I can do, with the limited energy and time I have left, and I am grateful for it. When Ali suggested I write a blog, I didn’t know what a blog was:). The patients who comment and write are very sophisticated and opinionated all on their own, not needing me to tell them what to think. They ask for my thoughts so they can put the information into their own equations, not take it as some kind of truth written in stone. The reflex to restrict what I say so that the poor gullible patients won’t hear it is patronizing. And to the conventional physicians who might be reading, why the sudden concern for our well being? There are many useless things that you are willing to prescribe that are much more dangerous than arv’s.
I have never claimed to be anywhere near “well” and I have said all along that there were confounders with respect to our treatment with arv’s. As noted in the comments, gamma retroviruses replicate by clonal expansion, so we need specific drugs, but transcription of viral proteins and the assembly of new viral particles may be involved in pathogenesis, if the hypothesis is correct. I am endlessly reevaluating everything with new information as it becomes available. I am not in fact a “true believer”. I would love to hear any alternative hypothesis that fits close to as well. Anything at all that might suggest a direction to turn for efficacious treatment. I am dismayed that we are back to having an idiopathic immune disorder, albeit repackaged to sound like good news. Redefining it as a syndrome, yet again.
There is no way to know if arv’s are helping us at this time, as I have said several times. I expected viral load measures and other ways to monitor that didn’t pan out. I did monitor several likely parameters which showed trends, but not convincingly enough to be useful. There are specimens sitting at the WPI that might contain valuable information. I certainly hoped it would be less ambiguous than it turned out to be. But there are others that experienced what we did, apparent cause and effect improvement from starting arv’s (often after an initial mild symptom flare). Some of them have written on this blog. I am NOT saying anyone should take arv’s, and never have, only that they shouldn’t be forbidden. The main problem I have recommending it as an option now, is that because it isn’t being studied, anyone starting will likely find themselves where we are, not knowing what to do for the long haul, and no help coming anytime soon. I actually think it is probably mostly a moot point now; the forces against have essentially won, shut it down for all practical purposes. The important thing isn’t really even arv’s, which at best only help incompletely, but our inability to get any help at all due to the attitude displayed in the reaction we have seen to the idea.
There are many drugs that are used because they work, even though the mechanism is unknown. One would think that for a debilitating disease which affects millions of people, for which there is no meaningful treatment, somebody would want to find out if that might be the case here. The usual way that happens is somebody has a good case, publishes it and then it gets studied. I have reported our experience. The burden of proof is not on me. What if it was a serendipitous discovery for the wrong reasons? The reaction of the medical community to trying arv’s is irrational, as the reactions of the medical community often are, especially when it comes to anything to do with this disease. The reaction of the scientific community is a joke, with no basis for an opinion at all; practicing medicine without a license, understanding nothing of the disease about which they are so opinionated.
Take a look at this paper: Zidovudine in primary Sjögren’s syndrome. Steinfeld. Rheumatology (Oxford). 1999 Sep;38(9):814-7. Did everyone get up in arms about this small clinical trial? Were the authors discredited for trying it? It doesn’t look like anyone followed up on it.
I have shared many personal details here, both physical and emotional. I have been very forthcoming, approaching undressing in public at times, so it is strange to be accused of “hiding”. The problem is that my sharing a list of symptoms that are “better” than before isn’t terribly illuminating, since some things are better or gone and some things aren’t. I even have a couple of new things. Like most ME/CFS patients, my condition changes from day to day and tweeting my moment to moment condition would benefit no one. However, I will try to define the big things.
The most tangible thing that happened to me, seemingly from arv’s, was the near resolution of my chronic malaise. I had it much of the time for 15 years. It went away shortly after starting AZT/Isentress and I almost never have it now. So 90% of the time before, 10% or less now. That alone was life changing for me.
My down periods used to last for 5 days to a week at a time, and now, rarely more than part of a day. The worst moments happen less often.
When I started arv’s, I never slept more than two hours without awakening, and I didn’t dream at all. I now often sleep all night with one or two awakenings and I dream normally. My day to day wellness is linked to the quality of my sleep in a chicken or egg fashion, so this improvement is key.
Painless migraines (scintillating scotoma without headache) and hypertensive crises are much reduced in frequency.
Another “big thing” that happened: I experienced a definite decrease in my peripheral neuropathy pain at one point early into arv’s. However, trying to explain one’s pain to anyone else is an exercise in futility. The pain I have now is worse than pain that almost drove me insane at the beginning of my illness, but my coping skills are very different. Still when the reduction happened, it seemed definite. I am not pain free, but my pain is quite tolerable and does not require pain medicine. Others have also reported less pain on arv’s. Again, I am reporting, not selling. For everyone who thinks they were helped, somebody else thinks they weren’t, but the risks of trying it are pretty minimal with proper monitoring.
I acknowledge that it is possible that all these things happened in spite of, and not because of, arv’s.
A big disappointment for me has been that the abnormal response to big time stressors remains, though it may be attenuated. Impossible to tell.
As for my daily functioning? I am able to work long days, most days, electronically (phone, Skype, email). I don’t have brain fog, but do sometimes have more symptoms after mental exertion. I am limited physically, more so in Santa Fe than Hawaii. I can climb a couple of flights of stairs with some dyspnea, more if needed, if I go slowly. I can usually walk several blocks, but might have some mild PEM if I overdo it, though my exercise tolerance is very variable. I don’t need handicap parking. I have no difficulty lifting groceries, etc. Resistance exercise is easier than anything aerobic. Swimming is easier than walking. Standing still is the hardest. The most physically challenging thing I have to do is negotiating airports and I use the airport wheelchair service for that. Gentle yoga is helpful. Pretty much all of the above is better than before I started arv’s, though as a commenter said, and, as I have said all along, other things happened too, before, during and after. Also my illness historically follows my state of mind (knowing full well how unPC it is to say that out loud). I am also much more tolerant of symptoms than I used to be, and not a very compliant patient, more confounders.
I can only work part-time face to face, a couple of hours at a time, but I’m OK for many successive days. I could fake it for longer hours than that, but don’t want to do that. My patients travel a long way to see me, and I want it to be useful and special. I am seeing new patients for 4-5 hours on two different days, which is working out well for all concerned. It is a unique, collaborative endeavor. Sick doctor and sick patient. I am limited, but can function fairly reliably, though there are days when it’s tough; however, there are more days when it isn’t.
When I started arv’s, I was unable to speak on the phone, because of auditory processing disturbance. I also had to lie down most of the day, only sitting or standing for a very short time, and I now sit up most of the day. Standing is more difficult some days than others, but there is never a time when I can’t if I need to; that was not always true.
So huge functional change in the last 20 months on arv’s, but improvement started about 6 months before that, with cessation of Lyme and symptom-based treatment. From housebound to functional, but not at all “well”. I have written about the reasons why I abandoned the use of rating scales to evaluate our experiment and don’t want to rehash it again. It is sad that it’s all we have. I am collecting them on my patients, but don’t expect them to be as useful as patients’ subjective reports. Yes, I do believe what my patients tell me.
My illness certainly isn’t gone, though it has lifted, lessened, but it is a relapsing, remitting illness all on its own, making it extremely difficult to assess cause and effect. I have said this over and over again. I am fully aware that many ineffective or harmful treatments have been perpetuated because of this feature of the illness (see my prior blog entries about Lyme Disease treatment). Whenever anyone gets better, they think it’s because of whatever they were doing at the time. I received an email recently from a patient who was housebound for fourteen years and suddenly improved enough to get a life, having changed nothing. I was of course influenced by the fact that there were two of us sharing the same experience; Ali and I had similar experiences with respect to the timing of improvement, though she had no side effects and I did experience a flare of symptoms initially. And for the record, neither of us has a history of placebo responses.
Ali went uphill during her first 6 months or so on arv’s, but had more therapeutic interventions concurrently than I did. The goal was always to get her better, not demonstrate something scientific to others. Her treatments did not prevent her crash when she tried to engage life again a year ago. She is doing well again now, but it is impossible to say if this level of wellness is the same, above or below her last remission. The “crash” didn’t become as serious as prior crashes have been for her. The important thing to her now, I think, is that she is better at this moment, and seems still to be slowly improving. Will it last? She is savoring it while it does.
My baseline was better prior to the events of early July than it is now, though I am not “crashed”. I have been under a great deal of stress, though I am hoping things will calm down a little now, so I can regain what I have lost. There is no way to know if I tolerated the crisis better than I would have without arv’s. I suffered the kinds of losses and persistent stress that have historically set me back in a major way. I stopped Isentress a while back, and am worse. Cause and effect? Who knows, but I don’t want to stay on monotherapy and am afraid to stop Viread, since a couple of patients who were forced to go off have lost gains. I may go back on Isentress. Also thinking about Lexiva (see Li on the sidebar).
I have received several demands for an apology from me to Dr. Peterson. As I said when I mentioned his name for the first time, I have never met him. Making enemies was never my intention, just the inevitable consequence of stating one’s opinions openly and publicly in such a contentious arena. My frustration feels overwhelming sometimes and it comes out in my writing. I hear from patients that love Dr. Peterson, and that does make a difference to me, but it still seems inconceivable that he abandoned the pursuit of a retroviral etiology when he jettisoned the WPI, knowing what he knows about the science and the disease. His teaming up with Konstance Knox to sink the WPI still seems really sleazy to me and his claim that it was to protect patients disingenuous. He could not have known there were problems with the VIP Dx test, or questions of contamination, at the time that he left, so how could he have been “right”. His agenda appears to go beyond figuring out how to treat the disease and help patients. I am not saying that I know precisely what that agenda is. It would seem that everyone who was involved with the WPI was hurt, likely including Dr. Peterson. I only wish that he hadn’t thrown the baby out with the bath water.
I regret any pain that I have caused, but some truths are painful. For me, it is painful to acknowledge how few friends there are worth having in the medical or scientific communities. My referral list for mainland doctors is a very short list. When I think back over the people I have mentioned by name in an angry or personal way, it is a select few that had it coming. My lack of professional decorum, or whatever you want to call it, comes from outrage, and mostly justified. I challenge anyone who has been sick with this disease for any length of time to write their truth and not say some angry things. My writing is also full of hope for the future. It’s just that it is the hope of learning to live well with the disease, rather than to truly vanquish it any time soon.
I really think many have too much confidence in “science”, especially retrovirology, which seems to have an unusual number of landmines scattered across its landscape. Even if Dr. Lipkin were to say tomorrow that he agrees that there are gamma retroviruses infecting ME/CFS patients, it will be a long time before that translates into specific treatment. Compassionate use of existing drugs should be tried and available, especially for the sickest patients. There are possibilities besides arv’s. Lenolidamide? Pentoxyfyllin? Nexavir? Existing drugs. What others? I recently heard of a big time response to Copaxone. Is anyone looking in a systematic way? Really looking? Why does it feel almost subversive to talk about it? The idea that these patients should, or can, wait is indecent. Again, I am not trying to convince anyone to do anything other than consider my ideas. I continue to write because some find it helpful, and I have made many friends, but I have made enemies too, and that gives me pause. I do grow weary of the personal attacks, on top of everything else that has happened recently. I need to focus on my patients, but want to continue to reach out to readers; there is so little information with respect to how and what to consider for treatment in the here and now. Five or ten more years is too late for many of us.
OK. Now I have some actual work to do:).
Aloha,
Jamie
Today’s song: Can’t Find My Way Home
>I don't always agree with everything you say or how you say it, but thank you for writing this blog. It brings hope and information to those of us who, like me, have been sick with this thing for too many years (in my case over 20 now).
Please keep doing what you are doing.
And never let the bastards bring you down.
>Thank you, Dr. Jamie. Your blog brings me information and hope. I am grateful to you for writing this blog. And I agree with anonymous:
DON'T LET THE BASTARDS GET YOU DOWN!
Or to give it some class, here it is in Latin for you: ILLEGITIMI NON CARBORUNDUM!
http://uncyclopedia.wikia.com/wiki/Illegitimi_non_carborundum
You know your message is reaching the people who need it most, and we thank you for giving us hope.
Patricia Carter
>I hope you understand how helpful this blog is. As I read, I nod my head and say, "Yes. Yes. That's how it is."
Flo
>Thank you so much for writing this blog Dr. Jamie! There are so many of us who are so grateful for the information, and hope that you provide us. I am going to talk to my doctor about ARV's AZT/Isentress and the other medications you have written about. Thank you for giving us the voice to fight for our much deserved good health! Best Wishes! Kris
>Please keep posting. You are a voice of hope and ideas and scrutiny, giving patients (and doctors too, I hope) much to digest and mull over. Thank you for being such an open book. Thank you for throwing out so much information, so many (often hard) questions, so many ideas. You would not be human if you did not sometimes get pissed off and outraged and allow that to show in your blog posts–that's part of why patients identify with you. Anger propels us forward; despair leaves us stuck.
>Go Jamie. I fear you will have to do repeat performances of this "splainin'
though, as many readers seem to somehow forget that this is a blog, like any other blog, that is a continuum of thoughts, opinions, and experience over time.
It would seem many people watch too much tv or listen to too much talk radio and presume that yelling, abusing, and twisting words are valid modes of communication. Whether or not I agree with every detail of what you say, I deeply appreciate your candor and courage, and your dedication to keep the information flowing, such as it is in your personal experience.
It's really helpful to me and to so many others to hear your POV. I enjoy hearing the experience of the moldies, too, and the people using
all kinds of other approaches. I learn from it all, and parse as I see fit.
Many of the commenters don't seem to understand that all humans have the right to make, and ought to be presumed capable of making, informed decisions for themselves–
and that ultimately the one thing over which each human being has SUPREME SOVEREIGNTY is their own body.
I have to insist that each of us must, and ultimately will, make the decision that is right for them after having considered information from every available source, and determined what resonates or makes sense in their particular circumstance and situation.
You are an invaluable part of this process for me, and if you are not to others, well, they are welcome to turn their gaze elsewhere.
>What ticks me off is the continuous inaccuracies that come out on your blog and the vile that is directed towards my research field.
First off, I am not a grad student but a post-doctoral fellow in Stephen Goff's lab.
Secondly, you claim that whatever you state is your opinion and should only be construed as much, but I am sure that vast majority of patients that read your blog take it as FACT since you are a doctor. What's even worse is you further incite the divide that exists within the CFS community. The fact that you are not aware of this boggles my mind.
You make repeated false statements as if the are fact that some people might take to heart. I will continue to call you out on this Jamie for misinterpreting scientific fact and drawing your own conclusions.
My favorite example:
" IT IS AN INFECTIOUS DISEASE. Where are the epidemiologists?"
False. There is simply no scientific study proving this. Like I said before, there may suggestions but nothing that proves it. XMRV/HGRV is clearly NOT the answer.
There are countless others that you have posted about in the past and I have responded anonymously but I'm too tired to list them all and it will simply take too much time.
However, what really gets me upset is the way you throw retrovirologists under the bus time and again. Who do you think you are chastising a research community that discovered the cause of AIDS? The work of Coffin, Stoye, my PI, and countless others allowed to study HIV and other retroviruses with a medical impact doesn't matter to you huh? The fact that you ROUTINELY suggest that we are heartless souls that don't give a crap about the pathophysiology of the disease is ludicrous. We study and know retroviruses very well and when we suspect that a retrovirus may cause disease there is huge effort to prove this. Perfect example is XMRV/HGRV.
Your personal attacks on Racaniello, Coffin, Stoye, and others goes beyond reasonable. Even your attack on me shows a huge lack of sympathy for medical research:
"You are being used by the insurance companies and the people responsible for this mess. Just wait till someone in your family goes down with it, Jason, or until your kid becomes autistic after a vaccination. You can call me."
You are the LAST person I would ever call if my two month old child came down with autism or CFS. How dare you even suggest such a thing. Sympathy my ass.
==
To patients reading this blog: I implore you to look past Jamie's polarizing stance and look elsewhere for support.
Lastly, the only thing I truly dislike is your stance on a retroviral cause for CFS and how you are soooo blinded by it. I am sorry for what you and your daughter are going through. And everyone else that is afflicted for that matter. I know and feel its a real disease and more funding is desperately needed for research.
Personally, and as someone who is not a CFS researcher (I study HIV not XMRV anymore), I would like to see a whole genome-wide profile of normal and healthy patients. This also needs to be extended to transcriptional profiles before and after onset of symptoms. 454 sequencing or some higher sequencing technology needs to be used here.
However, to continuously polarize the CFS community when XMRV/HGRV is clearly dead is simply a diservice to the patient community and to the retrovirus researchers that you attack.
Jason
>Jaime, let me add my voice to those thanking you for writing – and especially for your candor about your experiences & opinions. In a world full of deceit, it is so refreshing to read the blog of someone who tells it like it is, as they see it. I'm sorry that you get so much grief from so many, and commend you on the patience you have in dealing with those who see fit to harangue & hassle you.
You give a great gift to the community of patients, every time you write, sharing freely your knowledge & experience, despite the sure knowledge that there will be those who disagree & will respond rudely. You're a very brave woman. Thank you for being just the way you are!
Ash Collins
>HI Jamie,
I love your posts, you know some of the players, I don't, I see you as a patient who happens to also be a doc, and one of the few docs who openly admits that we (docs & patients) are all just groping in the dark for answers…..and you are right, answers may not be forthcoming in our lifetimes…so we all pick a treatment path to follow…even those of us who pick no treatment are following a path…time will tell what the best path is…thanks for sharing your journey with all of us! And hang in there! suev
>Jamie,
in which month's blogs can I find your lyme treatment posts? and which docs if any would you recommend in Northern CA? thanks, suev
>Thank God there is someone left who speaks the truth, with no spin, no bull, and no agenda.
I, for one, appreciate your blogs, and I especially appreciate the fact that both you and your daughter are sick, and yet you take the time to connect with us directly. That speaks volumes of your commitment and compassion for the ME community.
As Wildaisy said, don't let 'em get you down!
Thank you!
>This is a standout post! I learned a lot. Like someone else said, I disagree with a few of the things you write, but for the most part agree and anyway, we don't all have to agree for this blog to be really helpful as it is.
The nitpickers who think you shouldn't be talking about this or that should spend their time going after patent frauds like Wessely and White, not bothering a bona fide doctor who really helps the ME community. Seriously, all these hordes of haters who come out of the woodwork to harass and pile on bona fide ME scientists like you, Mikovits, WPI, etc., why don't they go after actual proven charlatans like the Wessely school? I have not ever once seen anyone challenge the Wessely school, CDC or NIH except ME patients (and eight ME scientists/clinicians that I can think of ever in the whole history of the disease).
Why is it that decades of fraud by a number of 'scientists' is just fine, but an allegation by a mentally handicapped blogger that a slide was mixed up in a slide show is worthy of serious media coverage?
>Dear Jamie,
I've never commented here before but I want to express my gratitude for your blog and your honest opinions. It is very helpful and inspiring to read about what you and Ali are doing, and I have never perceived your posts as trying to persuade us all to use ARVs.
Like someone mentioned before, "we all pick a treatment path to follow." Mine happens to be Nexavir + GcMaf and it's working great! But, that doesn't mean that it's not interesting to read about other treatments as well.
I think people like Jason need to stop reading this blog if it bothers them so much. Most of the (sick) readers have a good understanding of this disease now, which means that we also are aware of a lot of the things Jason and his comrades disagree with.
This community needs HOPE, so please let us have a few places were the focus is on exactly that, instead of tearing apart everything that is being posted..
Norway
>I will add that David Tuller has been objective in his recent articles in WSJ, taking a basically objective look at the PACE trial. But one person is not enough. All you skeptics pls take a look at Prof. Malcolm Hooper's damning works on the Wessely school. meactionuk.org.uk
>Thanks Jamie. Your writing is always courageous.
I may not always agree with you, but I'm always glad you write.
Dan
>One question I do have for you: how much do we know about ME/CFS compared to, say, Lupus, Parkinson's, Alzheimer's, or MS. It seems there are quite a few idiopathic immune/neurological diseases. Curious to hear how you would rank our knowledge of these. In other words, do we actually know less about ME/CFS or do those who know know just as much, but this knowledge has not made it mainstream, to med-schools, govmt. agencies, ecc.?
>Jason, thank you for giving us blog readers the benefit of your point of view. I think you have highlighted something Dr. Jamie has said over and over again, but which people sometimes seem to forget: Dr. Jamie is writing this blog on behalf of no one but herself. These are her opinions. I have never seen Dr. Jamie stating her opinions as facts, but I have seen readers interpreting them that way, and it is good to have a reminder of this.
Obviously, you have a science background, which many of us patients do not have. If you disagree with Dr. Jamie's opinions, it would be helpful to all of us to hear your reasons.
I have been reading this blog since it began, and I have never seen Dr. Jamie attack anyone, even though people have certainly made provocative statements. I have often seen her disagree with the statements of others and give the reasons for her disagreement.
Again and again, I have seen Dr. Jamie tell the truth, even when it is a hard, unpleasant truth. I have seen her respond when others such as Racaniello have made verbal attacks on her, and I applaud her for doing so. Whatever opinion you hold, pro or con, the inquiry is advanced by hearing the opinions of others, not by silencing them.
If you are asking me, as a patient, not to state my opinions about M.E., the disease which has stolen my life and left me homebound after 25 years of suffering, then you are asking too much. I want to state my opinion, and I would like to hear the opinions of others, including Dr. Jamie and you if you choose to do so.
For me, as a patient, I do not see Dr. Jamie's stance as polarizing at all. What I see is an honest woman telling patients the honest truth and letting the patients make their own decisions about what to do with the information.
If you disagree with Dr. Jamie's opinions, such as her opinion that M.E. may be an infectious disease, please present your evidence that it is not. If you believe that no retrovirus is included in the cause of M.E., present your evidence. The only thing you are telling us by your statement that you disagree with Dr. Jamie is that you disagree. This does not add to my knowledge about M.E. If you want to be helpful, present your evidence and state your arguments. Your bald statement of disagreement does not accomplish anything.
Everyone's opinions, including mine, yours and Dr. Jamies, if stated clearly and courteously, and reasons given with evidence, can advance the knowledge about M.E. I welcome those opinions.
Patricia Carter
>Skeptics: you owe it to yourselves to watch these very informative and entertaining trailers for the upcoming documentary on ME, What about ME? : ) Seriously, this will illuminate a lot:
http://vimeo.com/10536172
http://vimeo.com/12284015
correction: David Tuller writes for NY Times.
>Great Blog Jamie. Thank you for continueing to speak your opinion and not letting the meanies shut up free speech
And to Jason. There has been virtually no epidemiology into ME or CFS after the CDC dubbed a community outbreak. Yes outbreak of ME and called it "CFS" Please read Oslers Web ( Inside the Labrynth of Chronic FAtigue Syndrome ) ny Hillary Johnson so you can see the facts of how this disease does look to be infectious and contagious.
As I've testified before the government CFS advisiory committe my whole family has ME or CFS as the CDC like to call it , we all came down with it within a few months and we are not all biologically related. Now my two children have autism with many symptoms ver similiar to my own including siezures. So you tell me as a Virologist what that looks like to you in my family given I am adopted and my parents are not gentically related? The more I share my story the more I hear the same story back from other families and hear about more clusters of this disease. But you and your Virologist companions have dubbed it not to be HGRV's so now it's see you latter. Thanks for the concern buddy. Or should I say thanks for nothing.
Keith
>Hello Jason,
You probably know this, but CFS onset is low grade fevers, enlarged lymph nodes and reactivated viruses and bacteria. Now this could be "autoimmune" but one has to ask whether MAYBE so-called autoimmune diseases are caused by infection. AIDS patients and often CFS patients improve on antibiotics. They do not fully recover. Also, there has been a study comparing spinal fluid proteins of CFS and Lyme patients who have not recovered on antibiotics. The proteins are abnormal but abnormal in differing ways. Both indicate an infectious disease. A lot of us patients have been looking at this research for a long time. Have you ever read "Osler's Web"? It's a long book, but you might reconsider the notion that there is a retrovirus back of this strange new disease. Oh, and you might want to look at the epidemiology of MS, lupus, ALS, and maybe even ALZ. I don't know the answers but I know which rocks to look under. I wish you the best in your career, and I hope you help humanity. Let's keep looking under that rock where the mouse retroviruses hang out.
>"But you and your Virologist companions have dubbed it not to be HGRV's so now it's see you latter. Thanks for the concern buddy. Or should I say thanks for nothing."
Never said it could be some other virus. Check my post above. There are suggestions of viral infection. I agree with you. But the evidence against XMRV/HGRV is very strong.
Not trying to disagree with you here. Could be possible. But it might be another virus of unknown origin. Or combination of viral/immune compromised individuals. Or environmental (which could include viral infections).
But thanks for all the hostility.
Jason
>Quick correction – meant to say:
never said it COULDN'T be some other virus.
>Jason, how can you say HGRV research is dead when what Lombardi et al. (2009) found has never been fully sequenced?
Why don't you sequence one of their isolates and show that it is distinct from Silverman's VP62?
Now, THAT would be a worthy contribution.
>"If you disagree with Dr. Jamie's opinions, such as her opinion that M.E. may be an infectious disease, please present your evidence that it is not. If you believe that no retrovirus is included in the cause of M.E., present your evidence."
This is a good point. Unfortunately my life is incredibly busy. My wife and I just had our first child and I switched research from XMRV to HIV. I actually have a very promising story on HIV and human genes that are required for infection.
All my time is spent in the lab and then coming home to change diapers, which I love of course. ;)
But you are absolutely correct. I do need to present my evidence in a coherent fashion. There are a few articles and historical pieces from a virological point of view with CFS and I need to compile the data properly. I have yet to decide when I'm going to do this and how to write up my interpretations of the data. Whether on this blog or my own.
Jason
>@Jason
I don't know you, am not your father or brother…so you certainly don't have to listen to what I am about to say. It's just my own take. I say: keep your head up. If you are doing good work…stay at it! Put your head on the pillow at night and drift off to a deserved and peaceful night of sleep–conscience clean.
To be sure, no one wishes illness on your innocent child! Frankly, I am glad that a post-doc at Columbia is interacting in this way, so don't stop. Build.
By and large, you are addressing a community of PEOPLE who are desperately sick. Not patients, people. We meet and exchange ideas as people. What does that mean? Egalitarianism. Put it another way, if you are sick and people continue to call you invalid…something starts to happen on the inside, let's call it introjection for lack of a better term. Invalid soon sounds like IN-VALID. The frustration for people living and dying with this particular disease (and many others) is due largely to lack…lack of recognition that this is an actual disease; lack of suitable healthcare; lack of coverage; lack of treatment options. So, maybe you get lashed at now and then for sharing your opinion. Realize that when you say this (research) is dead, xmrv/hgrv is done, many people hear the sounds of a nail, the final death nail; death of possibility; death of hope. You guys wield a great deal of power BECAUSE you work with people and pathogens that invade and attack life. Don't forget the grave honor of your position. You are not simply talking about science. Please hear that. There is not such thing as simple, I suppose. So, when you tell sick people that there is no cure or EVEN a known cause on the horizon…you are going to take some fire. Its a natural, visceral reaction. I am not suggesting that you suppress what you believe to be true, as that does not help anyone either.
>Dear Dr Jamie,
Another sincere vote of thanks here! I'm stuck in the UK with no hope of taking ARVs but I find your blog informative, compassionate, honest and really helpful. I think that you and your daughter are brave pioneers and I am thankful that you are writing about your experience in such a clear, honest way.
I hope that you and your daughter continue to do as well as is possible. I will always be grateful to you for being bold enough to write this blog.
All best wishes to you,
Georgina
>"Jason, how can you say HGRV research is dead when what Lombardi et al. (2009) found has never been fully sequenced?"
Ha! Good question! Seriously! The whole retrovirology field has been asking the same thing.
"why wasn't a sequence from the Lombardi paper published?"
In light of recent events, i.e. "mislabelling" data in a premier journal – you may have found your answer.
Just a thought.
Jason
>(I haven't read the comments yet) This is your acqaintance, Adrienne here in Santa Fe. Allow me to tell everybody that although you were not yet practicing when we met informally, you did NOTHING to solicit my interest in ARV's in fact you discouraged it for me. For what that's worth.
If you didn't know about blogs, Jamie, when you started, you may not realize the attacks you have received are par for the course in many areas where it is a matter of opinion (and even many where facts are disputeable.) Its just how many people are in cyberspace. There is a cosmos full of hurting, angry people out there and the anonymity and the power to respond instantly fosters such hostile expression. If you make yourself visible, you'll get attacks. Period. So, friend don't take it personally, just, what-get over it? Best wishes.
>Jason wrote,
<>
Jason,
As you know, the Cleveland Clinic contaminated samples with VP62 plasmid it had lying around, and mistakenly sequenced that clone rather than what was in the samples sent by WPI.
I'm serious, sequencing an isolate from the Lombardi paper could be a good project for you. You could make sure it's done right. :)
Btw, no data in the Science article was mislabelled. A slide presented at the IACFSME conference in Ottawa mistakenly reverted to patients original ID numbers, rather than using the numbers that protected their privacy.
>"Never said it could be some other virus. Check my post above. There are suggestions of viral infection. I agree with you."
Jason, I'm all for good science.
This, however, is what is getting lost in the broader message about XMRV/HGRV.
This isn't anger about some grand conspiracy around XMRV.
It is anger that most scientists *seem* unconcerned about what may be the cause. As far as I know, the epidemiological studies simply have not been done. That would be a great starting point.
Dan
>"I'm serious, sequencing an isolate from the Lombardi paper could be a good project for you. You could make sure it's done right. :)
Btw, no data in the Science article was mislabelled. A slide presented at the IACFSME conference in Ottawa mistakenly reverted to patients original ID numbers, rather than using the numbers that protected their privacy."
On the first point: While I could do it, honestly, I have moved on from XMRV. When my paper came out I was focused on strictly the virology of the virus. How it replicated in prostate cells, and specifically why it replicated so good. My paper was good study on xeno-MLV replication in a preferential cell line, nothing more.
Although I was one of the first people to work on XMRV, my side was more basic science. I never actually came in contact with patient samples. There are plenty of other researchers that are better equipped to sequence that virus. By responsibility of that sequence falls on the shoulders of Lombardi and colleagues…
As for the second point. Umm its unethical to mislead readers of any scientific journal. This is what they did. This could be considered fraud. The original figure 2C did NOT contain any information that 5 aza was used. This gives a TOTALLY different and MISLEADING picture to the reader. Not only that but it is stunning from a scientific perspective that the proper controls were not used. From science magazine (blog):
"Vinay Pathak, a retrovirologist at NCI who earlier damaged the XMRV/CFS theory with a study published in Science that documented how the virus was accidentally created in laboratory experiments, says he is "bewildered" by Ruscetti's and Mikovits's explanations about Figure 2C. "If [5-azacytidine] was used in the original experiment, it's an egregious error to leave it out of the Science paper," says Pathak. "It makes a difference how I would interpret the results."
In science, researchers pride themselves on being open and giving all the information to the story. Unfortunately, this is not always the case.
Coming from a retrovirology field, I can conclude that she activated expression of endogenous retroviruses and everyone in the retrovirology field knows that the antibody she used can cross react with other MLVs/ERVs. What is truly stunning is the lack of control with normal PBMCs treated with 5 aza.
Strange indeed.
Jason
>"It is anger that most scientists *seem* unconcerned about what may be the cause."
No, its because we are so frikin' confused about the disease we have ABSOLUETLY NO idea what is behind it. Nada. Despite well-intentioned research.
Of course this makes us look like souless freaks that don't give a damn about people that suffer with CFS.
*rolling my eyes*
Jason
>I have a clue.
>Jamie,
Please continue sharing your voice, your opinions, your "song of the day".
You are very much appreciated.
>Jamie, as I've said several times before, my brain is broken but my intelligence is intact. I understand that your blog is opinion, I understand what you are doing is experimental – though to my mind every treatment taken for an illness of which the cause is not known is essentially experimental, no matter how innocuous it may be thought to be. I know that what works for you may not work for me, I know that opinions can change and so on, and blah blah blah blah blah. I am simply grateful to be allowed to share the journey of your foray into ARVs with you. You and others who are taking them are the closest thing to a clinical trial we have. It's useful information. Please keep sharing.
Jason, I am sorry if you and other scientists here are insulted by the vitriol thrown your way on the internet. It is unfair and unfortunate that all of science should be brought into disrepute in this regard. There are indeed a few good people out there who have put their careers on the line for this illness, and let's be clear, that is the price that has to be paid if you want to get involved in finding out what causes "CFS". Which, by the way, is the root of the divisiveness, not bloggers.
I don't know how old you are or how much of the history of ME you know. I myself am 50 and I have been ill, at times gravely, for the best part of 30 years. I've suffered enormous losses. Youth and fertility are but two of the non-regainables. Am I bitter? No, not really. I am philosophical about it. Shit happens. Am I sad? Yes, at times very. You grieve for those kind of losses, it's natural, and you share your kid's sadness and loss as they go through life with a sick mother. Am I angry? Yes, I am angry at times. I am angry with the medical profession who have been so incredibly miserly and narrow-minded about treatments that might help, and I am angry with science for not finding out what has caused this catastrophic illness I live with. I'm incandescent when I read the results of a 20 year research program that tells us that cracking your knuckles doesn't cause arthritis. WTF?
Science has not been able to give me any answers in almost 30 years. From where I am sitting it is at best indifference, at worst incompetence. Whatever the truth, anger toward science for not finding the cause is as natural and appropriate as grief is to the loss of one's life and hopes to a catastrophic illness. It's equally healthy and normal to want to vent it. I have a great deal of regard for the scientific community as a whole – it's an amazing field with the possibility of doing a great deal of good for humankind and there are many humanitarians working within it. However, it has failed me terribly, and it continues to do so. I don't know what Coffin, et al get up to in their labs on a daily basis but I know this for certain. They are not interested in my illness. If they were, I would not still be sick. I am currently embarking on antivirals – the only actual treatment (experimental of course) that I have ever had that seeks to address a possible cause of the symptoms, rather than something along the lines of paracetamol to help the pain (morphine's the only thing that's ever alleviated the pain by the way). That's a pretty poor show after three decades by anyone's standards.
So please don't get angry with us. Our anger with science is justified. To be so incredibly sick and to not have that acknowledged by proper diagnosis or basic treatment for it, is a form of cruelty. It's a bit unreasonable on the part of scientists to expect any great respect for science to be born out of such circumstances. At the heart of our anger is grief and despair. What we desperately need is your help.
Please help us find out what is causing our illness.
Then we promise to shut up and go away :)
>"No, its because we are so frikin' confused about the disease we have ABSOLUETLY NO idea what is behind it. Nada. Despite well-intentioned research.
Of course this makes us look like souless freaks that don't give a damn about people that suffer with CFS."
Hmm. I never called you a souless freak. I simply pointed to one of the sources of the anger. Again, where are the epidemiological studies?
If, as you say, scientists don't have a "frikkin clue" about what causes a disease that afflicts millions, perhaps that should be a wake-up call to look harder and with more creativity?
>Jason said…
"What ticks me off is the continuous inaccuracies that come out on your blog and the vile that is directed towards my research field."
Jason, please note that "vile" is an adjective and thus cannot be directed
in the way that either metaphoric or biological "bile can.
Please note also that this post is not driven by biliousness but by orthographic perfectionism ;)
>"If, as you say, scientists don't have a "frikkin clue" about what causes a disease that afflicts millions, perhaps that should be a wake-up call to look harder and with more creativity?"
That goes without saying. We all want this, even researchers.
The souless freak comment, albiet a bit harsh, was directed at the writer of this blog.
Jason
>"That goes without saying. We all want this, even researchers."
Great.
We're on the same page then.
Dan
>To Paula Carnes,
Yes, infections are certainly often involved, especially at the so-called 'onset', but what preceded that onset? There may be other things involved: pesticide exposure, heavy metals, chemical exposure — all of which can disrupt the immune system, causing prolonged illness.
To Jamie,
Best post yet. Long, yes, but overall, the most honest, IMHO.
To Patricia,
"I have been reading this blog since it began, and I have never seen Dr. Jamie attack anyone…"
Well, I guess I'll agree and disagree. She certainly has thrown Peterson, and now Whittemore under the bus. You might not consider that an 'attack', but it's not exactly Rebecca of Sunnybrook farm material.
>Very funny. Rebecca of Sunnybrook Farm comment.
>Who wants to read Rebecca's Blog? I prefer the way it is.
>> That goes without saying. We all want this, even researchers.
Given this, what is your opinion on why there has been almost no epidemiology?
>@ErikMoldWarrior God love you! That was one of the most effectively inconspicuous and concise posts I have ever read.
@Jason I echo the sentiment that was stated earlier. I am glad that you are interacting here. It is somehow strangely refreshing to hear a researcher express his frustration and admit the seeming elusiveness of an etiology. Of course it sucks because we all want a cure. But, you know what they say, misery…loves Columbia post-docs?
>@ Jason
I really appreciate your comments here. And the energy and patience you are using to keep communicating. Thank you, sincerely.
Bella
(ME affected for 6 years)
>@Eric – you accidentally missed out the word "don't" in your reply.
@leela – "Please note also that this post is not driven by biliousness but by orthographic perfectionism ;)". I love it!!!
>@Jason, yes glad you are interacting here, and sharing your frustration and yes write your ideas somewhere if you can. Don't roll your eyes ;o) we don't all think you are 'souless freaks'. But trust me if you or a loved one had been at the receiving end of years of condescending and abusive behavior by medical practitioners, you would be freaking out for real. All this simply because the two letters M.E. (later replaced by 'fatigue') are on your medical file.
@Jamie, thank you.
Pat
>Jason please could you answer this question.
I will put some information into context first.
John Coffin saw all the originally data from Lombardi et al. also had the slide in question for the best part of 6 months and was in the audience where the use of AZA on PCR negative patients in Lombardi et al. was discussed 2 years ago.
Hiding the identity of patients is an ethical issue and is standard practice
So why did Coffin and Pathak fail to name the RT-PCR assay, which is a more sensitive assay then the standard PCR used on the early xenografts, in their paper Paprotka et al.?
>Thank You Doctor! Please excuse my simple vocabulary, all! When I pray, I no longer ask to be healed.I ask to be made better.Thus,I want the ARV'S.I have been ill 29 years,7 months and am now in my 52nd year of life,( if you want to call this life )I do not have time to waste! AND,to the person(s)who does not believe this illness to be contagious,I would like you to tell that to my younger brother and sister ,who became ill AFTER I was forced to move back to the family home when I suddenly became ill.Or,the other people, later into my illness,that I was in close contact with that became ill!
>"So why did Coffin and Pathak fail to name the RT-PCR assay, which is a more sensitive assay then the standard PCR used on the early xenografts, in their paper Paprotka et al.?"
You are going to have be more specific here because it seems to me that they described there methods and labeled there data just. I would be able to repeat their experiments if need be in the lab. However, I would NOT be able to repeat the data from the Lombardi paper as described since they left out key methods (i.e. 5 aza). Re: paprotka et. al. – the only RT-PCR experiment is in figure 1C and they describe it perfectly:
"To quantify the amount of XMRV DNA in the CWR22 xenografts, we developed a real-time polymerase chain reaction (PCR) primer-probe set that specifically detected XMRV env and ex- cluded murine endogenous proviruses present in BALB/c and NIH3T3 genomic DNA (Fig. 1C)."
They also describe the results of the experiment, but of course I don't need to copy and paste since the results are pretty clear.
Care to tell me what RT-PCR assay they did not named? I can't see it.
Jason