I believe this demonstrates a social ‘immune system’ in science which is remarkable for its ability to distinguish ‘self’ from ‘other’. ~ From my email
I feel like we are post-op. The patient got opened, the problem identified and resected, but the smallest movement produces a wince of pain. Still, it is becoming clear, there will in fact be a future. The dilettantes, fair weather friends, have all gone home, closed the shutters, locked their doors, and minds. Nothing more to think about. We have been easy to ignore for a long time. Now, it’s even worse than that. The scientific community is actually making fun of us in their ignorance, as is the CAA, our supposed representatives, who in 20 years have never managed to sound the alarm. If XMRV wasted some money, what about the CAA? If these scientists were truly objective, they wouldn’t all be so happy about the outcome. Mikovits, Ruscetti and Hanson, a very few others, are the only scientists in the world who know anything at all about the disease. And the fact that they care about us, doesn’t make them wrong. The rest of the scientists in this story are completely ignorant of the pathophysiology. Clueless, and not interested. Racaniello, ERV, commenter Jason, et al have not an iota of understanding about why simple retroviral disease is such a good fit. To them, it’s all about a test, not a disease. Money, glory, fame. Most certainly not about patients. They seem shocked to find out there are real people impacted.
The idea that it is better for the patient community if research into gamma retroviruses stops now, so that all the money can be spent on investigating the same old downstream effects and known pathogens, is a cruel joke.
From the limited anecdotal evidence we have, I’m pretty sure the response to antiretrovirals, even without specific drugs and without a PI, is better than placebo. The AIDS community doesn’t want to share their drugs, even though they are available to healthy partners and prostitutes for prophylaxis. Doctors who have already prescribed antiretrovirals are now, on the heels of the BWG results, refusing to refill prescriptions for their own patients who have improved on them! What could this be but politics and money? Why is the scientific community invested in creating a prohibition against these particular, not very dangerous, drugs? Why so much resistance to the idea of a retroviral etiology that they are gloating as the hypothesis takes a hit. Let’s have a party and burn Judy Mikovits at the stake. Glee. At our expense. Like psychopathic children who enjoy pulling the wings off insects. This, while babies are born with it, new cases are occurring every day and huge numbers of patients, already sick for decades, circle the drain.
The question of whether antiretrovirals are helpful or not and for whom, is a question that hasn’t even been asked, let alone answered. It is politics, not medicine, that prevents it from even being considered. The clinical piece still strongly suggests a retrovirus, or retroviruses. It is possible that it isn’t only gamma retroviruses. ALV’s, alpha retroviruses, do pretty much the same things as MLV’s. Although it is likely that ALV’s would be less infectious to human cells than MLV’s, because of phylogenetic distance from mammals, there is evidence in the literature, by none other than John Coffin, that suggests, under some circumstances, it is possible for ALV’s to infect human cells. But he didn’t think we should worry about it: Science Fiction? and Pure Speculation (I can see and hear the virologists, rolling their eyes and snorting, all the way from here). So what’s the motivation for making sure this hypothesis is found wrong? If it is right, it’s responsible for bringing down the health of the species, so some might be a little invested. But it’s so big, that saying it out loud makes you sound crazy. We have a possible source of infection: parenterally administered simple endogenous animal retroviruses. What else causes both neurological disease and cancer? Methylation issues, multiple gene activation in the same patient, persistent immune activation, multi-generational neuro endocrine immune disease. Think top down. What else does that? The fact that not everybody gets sick, that there are various opportunistic infections, that it goes in different directions in different people, that it is of variable onset shouldn’t be so bewildering. There is obviously a greatly increased risk of ME/CFS in the partners, children and parents of patients. Too much autism found in the same families. IT IS AN INFECTIOUS DISEASE. Where are the epidemiologists?
There have been lots of questions, people asking for clarification of the last two blogs I wrote. For the most part, if it was ambiguous, it is ambiguous to me, at least I wouldn’t personally testify to it, especially anything about who did what for the BWG. I don’t think there are any villains in this story. Only people who lost their way, sailing into open ocean in a dense fog without a navigator. People are fallible, and we are where we are because they never had a chance. Much of what ensued was like middle school more than anything else. Nothing sinister. No malice and absolutely no aforethought. It still has a middle school flavor to it, all the way to bullying in order to cover-up.
What I meant by saying that the XMRV testing that was done at VIP Dx is now null and void is that there were likely many false negatives and false positives; therefore it had no clinical utility. It cannot be interpreted. However, everyone knew that it was experimental. At the time, we were grateful to have it. Dr. Mikovits stands by the testing done at the WPI research lab. My understanding of her position is that she was not responsible for quality control or precisely which assays were used at VIP Dx, after the initial release of the test, when Cooperative Diagnostics made their bid for the market. If contamination occurred, it sounds like it wasn’t necessarily with VP62, but with the cultures from hot patients (like us). Apparently, what has been learned through all this is that the labs need to be using precautions required for Mycoplasma. Retroviruses have not been thought to be aerosolized previously, but now it seems, some probably are. There are two papers that show rapid spread through a clean lab in a couple of days, Zhang and Sfanos, linked on the sidebar. The serology is picking up proteins that are, if not actually to HGRV’s, at least very similar to MLV proteins. It has nothing to do with XMRV per se, and cross reactivity has not been ruled out. At least this is how it’s been explained to me, though I know very little about the technicalities of lab testing; more than I used to, but still not much. Therein lies a key problem, little sharing between doctors and scientists.
The slide issue seems like a tempest in a teapot to me, part of the same insanity that requires Judy Mikovits to be a perfect human being or all is lost. There is now an investigation, so in the end, we will find out what the designated judge says. What I would like to know is, how did Dr. Mikovits’s firing go from ‘insolence’ to ‘fraud’ from Thursday to Monday? Dr. Mikovits was fired on September 29 and ERV blogged her over the top accusations on September 30, I’ve been told, though I still have not been to her blog (thousands have visited mine from her site). Who fed it to her? The editors at the Chicago Tribune should be ashamed that Tsouderos was taken in. Nothing more than tabloid journalism. For the record, I waited three days after Dr. Mikovits was fired, before I wrote anything. By then, it was clear to me that it had been decided that Dr. Mikovits’ reputation was the price of the WPI’s survival and my inbox was full of unanswerable letters. I said nothing for a very long time, hoping for a different outcome. Also for the record, I did not send any letters to the press. Trine Tsouderos wrote to me and asked me what I meant by lock-down. I told her “The personnel was locked out of the lab.” (proof of which is on my computer). Nothing else came from me.
Obviously, something went very wrong. Most likely lots of things did. I know Dr. Mikovits would like to have the chance to figure out what. I think the probability that what went wrong was a ‘fraud’ committed by Judy Mikovits is at the very bottom of my list of possibilities. I know her personally and it seems beyond improbable. Inevitably mistakes were made and everyone on the planet has something to hide, so, poor Judy, and poor everyone else involved.
I hope to never be an insider again. Two people have asked me how I could have forgotten what the Whittemore’s did for me. I have not forgotten, but they seem to have forgotten what Dr. Mikovits did for them. I was videotaped for the WPI saying they had saved my life, and it was true. I said nothing, except that I had been fired; I said that because I wanted to distance myself from the decisions being made there. But then Dr. Mikovits was fired. If I hadn’t written anything, Trine and ERV would have had the only say. But I am not going to engage in any further mudslinging going forward. I am now supposed to apologize to this one and that one, who was right because the interloper has fallen; the WPI was wrong and I stood behind them. I was a starry eyed kid then, believing that the cavalry was actually coming over the hill. I am a battle weary soldier now, having taken a few arrows in the heart. I no longer think the cavalry is coming at all, any time soon. Also, I still think that all the people I mentioned at one time or another on this blog in a negative context have behaved very badly, even if everything the WPI ever did is wrong. It’s not black or white. It never was and it never will be. The patients are the ones that get screwed, over and over again. CAA, the most divisive force in our community, HHV-6 Foundation, WPI, it doesn’t matter. Loss and more loss.
So, “Cheshire Puss… Would you tell me, please, which way I ought to go from here?”, said Alice to the Cheshire Cat.
Since I am feeling like my change the world phase is over, as Kita said, what next? My job now is to interpret the events in terms of their clinical significance, one on one. Primum non nocere is my guiding principle, as it was for my first 25 years of practice. When possible, I include the pocket book in that. It is curious what insurance will and won’t pay for, having very little to do with what might produce results with the least risk of harm. In my practice, I am using only LabCorp and Quest for labs. I am no longer interested in results from labs that have a stake in the results.
My attention is on my daughter, as it has been all along. She was “Harvard material”, as my step-father, a Yale/Harvard educated surgeon, said before he died of the late effects of treatment of his Gleason 9 prostate cancer. Ali still might succeed at having a life with the right physical and social support. For a long time I have envisioned a collective with the goal of creating a supportive, assisted living environment for young people with CFS. It is clear to me that I will be dead before there is treatment that approaches a functional cure. Whether you think arv’s are a good or bad idea, we are both doing well on them. Ali is engaging her life again, dating, going out, shmoozing with her illness. Not suffering much at all. Last time she was at this point, she did too much too soon. She is wiser now.
She is very responsive to the right treatments, now that we know what we are treating (not a specific pathogen, but still a context and approach to the illness). Folinic acid is hot stuff for her, Leucovorin 10mg IV weekly for a while, and now she is playing with the oral form, finding some of the same side effects as with Deplin. It appears to build up over a period of time, days to weeks, and cause dose dependent sleep disruption. But some amount helps the overall picture. I am hearing similar things about Deplin from patients. Important initial response, then dose related insomnia, sometimes still with improvement in other things. For Ali, the amount of folic acid derivatives required for positive effect without sleep disruption seems to be decreasing with improved wellness. So she’s tinkering. Next stop, 5-MTHF. I’m starting to order MTHFR mutation testing on my patients (MTHFR Thermolabile Variant DNA Analysis at LapCorp and MTHFR DNA Mutation Analysis at Quest).
She continues to use oxygen with great regularity. We both find it useful for rescue, as well as believing that it supports our recovery, which seems steady and real, but slow. There was a single comment a while back that oxygen had been bad for someone, but without specifics. I want to hear about any problems, since I’ve been advocating its use. I have a lot of experience prescribing oxygen as a hyperbaricist and the risks, without adding pressure, are so minimal as to be almost non-existant. You can always turn it off, after all. Long term, there may be a risk of accelerating aging. That’s all I can think of. I can’t really come up with another reason not to try it, but I certainly want to hear it, if someone has something to add to the discussion. So far, practically speaking, my patients are liking oxygen. It is representative of the insanity in all this that patients can have Fentanyl patches for years and years, but can’t try an oxygen concentrator.
My illness is pretty much refractory to everything, except being positively engaged. For me, helping helps the most. I do best when I don’t mess with it much. I was the sickest when I was taking the most drugs. Antiretrovirals are one of the few things that actually seemed to move me. I sent specimens to the WPI regularly during first year of our experiment. Dr. Mikovits had evidence of our positive response to antiretrovirals, at least initially. I wonder where those specimens are now? I’ve tolerated 5 trips to Reno and 3 to Hawaii in the last 13 months. Pretty good for an ME/CFS patient who had been desperately ill twice in the previous few years. It is becoming clearer and clearer that I do feel better in Hawaii than Santa Fe. I think for me it is the elevation, because Santa Fe is one of the cleanest cities in the country, Los Alamos aside. However I’m hearing from lots of people that say they felt better in Hawaii but who live at sea level (and others who didn’t get better there of course). Some of those people live in really polluted places, like LA and NYC, so that may be the greater factor for them.
I am in complete and total agreement with the mold warriors that environment is critical to success, defining success as the patient’s maximum possible wellness within the context of an incurable, but remittable disease, though my idea of environment is much broader, not just avoidance, but feeding the positive, including strengthening the spirit. Stress makes us sick. My fantasy kibbutz would be organic, as chemical free as possible, MCS friendly, and of course as mold free as achievable. But as important, would be an opportunity to be alone, with necessary help, or to be able to with others who understand and support. To be able to go out, but not fear ruining it for everyone else, if assistance is needed. To not have to apologize for existing. I see the mold warriors insistence that I am the enemy as a microcosm of what anybody with this disease who finds a way out feels. Huge frustration that they aren’t being heard in the face of immense unnecessary suffering. It’s just that from my perspective, hearing from people from the full spectrum of the ME/CFS community, it’s one of many factors, most important for some, but not so much for others.
Almost the most important thing that didn’t happen at the WPI clinic was the use of an electronic EMR by multiple clinicians, so that a large database would be created, which would ultimately be searchable by any parameter chosen. I am using Practice Fusion, free cloud based EMR. It is brilliant. It can only improve patient care for doctors using it. Converting from another method of documentation is difficult, but it’s not insurmountable. It’s possible that physicians might be able to contribute to the creation of a large patient database anyway, even though they are not physically in the same place. I mentioned a particular test above; it is beyond time that clinical research (pardon the oxymoron) was happening in a broader context than one physician’s practice. Thinking about this, and what might be still be possible…
Tonight’s song: Closer To Fine
>Thank you for hanging in with us, Dr. Deckoff-Jones. I know this has to be extremely difficult for you, and I appreciate you having the focus and clarity to explain to us what really happened.
You said "I hope to never be an insider aga in." I hope you never have to go through anything like this again, but if someone was going to go through it in order to tell us what happened, no one could have done it better than you have. You have "kept your head when all about you were losing theirs and blaming it on you" (Kipling quote, slightly reworded). This situation is very chaotic and it is especially hard for those of us who are sick and have cognitive problems to keepup. Without you, I think it would have been hopeless.
Bless you for what you have already done for us and what you continue to do for us.
Patricia Carter
>Brava!
>Here is the real quotation from Kipling:
"If you can keep your head when all about you
Are losing theirs and blaming it on you,"
http://www.davidpbrown.co.uk/poetry/rudyard-kipling.html
>Jamie, do you have any idea just how insane you sound?
>So 2 brava's and 1 you're insane, so far:). At least it wasn't dull:).
My warmest wishes to all,
Jamie
>Anonymous….that's a pretty mean comment!
>Jamie,
What do these tests tell you? MTHFR Thermolabile Variant DNA Analysis at LapCorp and MTHFR DNA Mutation Analysis at Quest). And what do you do with the results… thanks! sue v
>Insanity is relative. It depends on who has who locked in what cage.
-Ray Bradbury
>Jamie, thank you for dreaming. I'm dreaming, too, for my 20 year old daughter who has had sick parents since she was 9, has been sick herself since she was 12. She says she has stopped dreaming of a future, but I think those dreams are buried, not dead. A safe place to live, to have friends who understand…that dream brings tears to this mom's eyes.
>"The idea that it is better for the patient community if research into gamma retroviruses stops now, so that all the money can be spent on investigating the same old downstream effects and known pathogens, is a cruel joke."
I agree; from my perspective, some people including CAA, are pretending that because most of the evidence is against XMRV, that all research into HGRVs should be stopped. CAA is causing more harm than good as usual.
>Thanks for naming the lab tests. I have wanted to get methylation issues checked out, but only heard of specialty labs that do it. I have spent way too much on specialty labs.
Can a regular doctor interpret the results?
>For the record, here is a 3rd BRAVA!! Thanks so much for sharing your thoughts, Jaime. Sending you a tons of hugs and warm wishes, Sue
>It frustrates me to no end to see that a proper response is not being mounted by governments. There are 17 million people in the world suffering – that is twice the size of New York city and governments don't send a cavalry? They don't try to get the trapped miners out from underground? God have mercy on us.
>jamie you are not speaking the truth re: Dr. Jason nor the CAA as they have not called for the HALt of XMRV research. WPI and judy must answer to the patients at some point. Maybe in a court room, who knows? Try to speak the truth and post facts that can be verified, please do not add to this mess.
>Thank you so much. I have been trying to comment for several months, but haven't been able to –haven't come upon the proper ID method, I guess. I have a daughter in her early 30's, ill for 14 years now (after I was ill for 10) and have read your blog as much for your "mother" perspective as for your "doctor" or insider perspective. I am functional and trying to survive dealing with my daughter's needs and trying to get help for her throughout her illness. Thanks also for mentioning the Deplin and the testing. She just started Deplin because her two antidepressants had stopped helping her depression. The Deplin worked in 2 days at 7.5 mg and when she went to 15mg, she could not turn off her brain. Her psych knows nothing about ME and not much about Deplin. Too sad we have to look on the internet for ideas on what to try plus information on side effects etc. Thanks, too, for the info from your perspective on WPI and the recent chaos. Money and power and recognition pervert much in our society. I search for expressions of honest perception based in some kind of knowledge and production of references, which you have done. I hope you will keep sharing with us.
Peggy in Texas
>Here's a 4th BRAVA!
This post is informative. I don't know a lot about the science of all of this, but your explanation at the top is helpful.
I agree on Dr. Judy Mikovits, although I don't know her. I think she was motivated by good intentions, no matter what happened. (It angers me more that the hostility is directed towards a woman scientist. Plenty of zigs and zags happen in research, as for instance with cancer findings, conclusions, treatment, that don't pan out. The researchers are not smeared on the pages of the New York Times or Science, etc.)
I think there is an innate contradiction between researchers and companies making money on tests and treatments. It should be separated, so profits are taken out of this equation. But what is upsetting that this research becomes so competitive — for grant money, for recognition, for revenue for attached testing or pharmaceutical companies — instead of collaborative, with sharing of data, trends and results. (Other countries do this.) Instead scientists are isolated, doing their own thing and not sharing. My pet peeve here!
With the CF Initiative, more viruses will be studied by Ian Lipkin, for one.
I don't think anyone can put the genie back in the bottle now. Mikovits and we, the CFIDS community, and a few other scientists and doctors, have pulled this disease out of the closet and into the public domain.
We have to help keep it there and push.
This disease needs a Manhattan Project to solve, as does cancer.
I've switched gears from being stressed out — which aggravated my CFIDS symptoms, to being hopeful that the CF Initiative, Lipkin, the Lights, Natelson, Klimas, Hansen, Komaroff, etc. will keep on researching and come up with objective biomarkers — and maybe someone will find the cause and treatments.
Brava to all things positive here.
>The CAA has been consistent with their incorrect facts. How is it they are still 2 years behind with what are facts?
>It's unclear — is this blog being critical of Dr. Leonard Jason? If so, can someone provide an explanation?
>Anon 12:21: I think she was referring to a commenter named Jason. That threw me for a second too.
>I'm not sure what paper Jamie's is mentioning, but why is he spending money to define a disease using questions?
>I hope you keep talking to us here, Dr. Jamie. Your blog is a light in the darkness. Brava, tambien.
Where do we go from here? Perhaps we have to do it for ourselves, set up and fund a proper clinical trial? … Wouldn't happen in my country, but in the US it is surely possible… just a thought.
>Jamie, please, you need to reexamine the evidence. I really hope that you, and Judy and the WPI come out of their siege mentality and critically examine their position. Just take a look at the patients here who take your words as gospel – you have a responsibility to be extra diligent in your fact checking, and I have the feeling you are following a believe and not a hypothesis. We need to find out what is causing this disease and holding on to a believe that IMHO can not be sustained will lead to a XMRV-cult. Please, give people a realistic hope – not some idealistic believe…
>And a another BRAVA from me, Dr Jamie. Thank you for sharing your painful journey with us and helping us understand the distressing and perplexing situation we now find ourselves in.
After 39 years of this dreadful illness, which has taken all my adult life, I did have a glimmer of hope that there was finally a possibility of medical understanding and even care at last, if not treatment. That now has all been snatched away almost overnight.For those who have spent decades being ill, mostly housebound, having seen our chance of life slip away, the abrupt loss of Dr Judy Mikovits feels like being handed a death sentence. She finally gave us hope and that has now been extinguished once again.
What I have learnt from these last two years is that this illness seems a dead fit for a retroviral explanation. I so hope that there will be a way found for Dr Judy and others to continue their research into this devastating disease so that the next generation can be saved from this…..and I speak from personal experience….. apparently infectious illness.
Thank you Dr Jamie for sharing your experience and thoughts. I greatly appreciate them.
Love and hugs for you and Dr Judy and please continue writing for us. It is much appreciated.
Jenny
>Anon 12:21,
I was most definitely NOT referring to Dr. Leonard Jason. 'Jason' is a graduate student at Columbia, working in a lab next to Prof Racaniello, who has been posting comments recently. I have added a clarifier to the blog.
Thank you for asking,
Jamie
>Jamie I'm so glad you continue to call it how you see it.
Your style has helped us get to know you and as such we are able to use our own judgements as to whether we trust you or not.
With so many people telling us to get in line its nice to have you here being yourself and giving voice to concerns so many of us have.
Don't change anything, you are exactly as you should be, you are your honest self.
Leave the spin and PR to the smartly dressed, well oiled, well paid denialists.
There are more people seeking the truth than there are people employed to bury it.
cheers
fly
>Tony Mach,
I have no problem seeing a belief through to it's conclusion, and not the conclusion that is being foisted upon it by those with conflicts of interest.
In the ME world we're used to bullshit from the establishment, and it's reached the point where, if what someone is doing stirs it into frenzy, then frankly, we have even more solid grounds for supporting something.
I wont be satisfied until all the RVs have been sequenced and patients tested for them vs healthy controls.
It's not false hope, it's just common sense in a world where your disease has redacted secret files and if you're from the UK, the government employs a man who ignores piles of biomedical evidence to instruct you about your faulty illness beliefs. If you're an American perhaps your local doc or prof didn't get tenure because they did a paper on ME/CFS. Or they wont do research because they shut down your centre for ME/CFS excellence and there's no career option, no method of building a work/life/family foundation.
Blaming Dr Deckoff-Jones is an oversimplification of the atmosphere that has been constructed over a long period of time. The legacy here starts with the work of Elaine DeFreitas, lest we conveniently forget.
Thank you Dr Deckoff-Jones for staying the course.
>@Tony mach
"I wont be satisfied until all the RVs have been sequenced and patients tested for them vs healthy controls."
Apart from a full length clone everything else is published including a second positive study.
>@Jamie
"I was most definitely NOT referring to Dr. Leonard Jason. 'Jason' is a graduate student at Columbia, working in a lab next to Prof Racaniello, who has been posting comments recently. I have added a clarifier to the blog."
Posting comments on here?
>"Mikovits's collaborator, Francis Ruscetti of the National Cancer Institute (NCI) in Frederick, Maryland, who ran all of the Western blots,"
http://news.sciencemag.org/scienceinsider/2011/10/xmrv-researcher-fired.html
>With silvermans retraction the people running the 00 studies have huge problems.
The VP-62 sequence is now known not to correspond to the gammaretroviruses detected by Lombardi et al. It is also known that Silvermans primers are capable of detecting the VP-62 plasmid but NOT capable of detecting the gammaretroviruses which exist in the Lombardi CFS patients. The WPI and NCI tried to use Silvermans primers on the patients who tested positive for their nested PCRs but could detect nothing. A great number of studies used Silvermans primers alone or in combination and thus their negative findings are invalid.
The slide being so viciously attacked demonstrates that the viruses are normally in a latent state, which is maintained by methylation of the provirus.
Remove the methyl groups as shown by the experiment in the slide and the virus becomes active.
So what! everyone says.
Well, the virus or viruses are integrated into G-C rich areas called CpG islands. These are extremely difficult if not impossible to amplify using standard PCR approaches.
Any PCR which has been adjusted to detect the VP-62 clone in a spiked sample would not have a prayer of detecting a human MLV-related gammaretrovirus integrated into such a region even if the virus did have the same sequence as VP-62, which they do not.
Thus, the combination of Silvermans retraction and the discovery that demethylation can activate the virus or viruses in question completely invalidates ALL the negative 00 studies.
The enemy must get Lombardi retracted at all costs before the scientific community as a whole realize that.
permission to repost granted
>No Way Out
I feel like a prisoner in isolation being tortured and slowly going insane. I've tried killing myself but that didn't work. It just made me worse. Unfortunately, I am not a violent person, so violent methods like guns or hanging are not an option for me.
But hearing the truth (and I know the truth when I hear it) is the only thing that comforts me. The truth is not only validation but is also, for me, empathy.
That's why I visit your blog every day, hoping you have written another article.
>Thank you Jamie for sharing your knowledge, your feelings, your hopes. My two children have moderate ME, I am bedbound with ME. It is devastating, and after actively coping with it, I am now no longer able to manage my care. We all hoped WPI would be a center for valid research and treatment. After the 1985 CDC takeover we have found no practicing MD's who dare to know about ME. Our best wishes to you and Ali.
>To the person who wrote the post about …. No Way Out.
I really want to reach out my hand to you and say how sorry i am to hear you sounding so sad.
I no how hopeless things seem at times but please keep holding on.
god bless you and we're all here for you.
Crafter Kate xxxxxxxxx
>Jamie —
Many of the people who read your blog casually are of the impression that ARV's have moved you from bedridden to "mostly well" status.
Some of the scattered comments that you have made have suggested that you're not anywhere near at that level, especially when you are in Santa Fe (even using oxygen).
It thus seems that, purposeful or not, you are being deceptive in promoting the extent to which ARV's have helped your illness.
It thus would be helpful if you were to provide some objective information about your current health status.
For instance:
* Of the various symptoms in the ICC ME, which ones are still problems for you? (Listing each symptom with a note of mild/severe would be especially helpful.)
* How many patients are you currently seeing? How many hours of work are you currently doing per week?
* How many hours a day do you spend upright?
* From start to finish, describe a productive day for you? Describe an average day?
* How far can you walk?
* How long does it take for you to recover from (say) a couple of hours out shopping and running errands?
* To what extent (mild/severe) do you currently feel fatigued on each of the measures on the scale at the end of this paper?
http://wwwcache1.kcl.ac.uk/content/1/c6/01/47/68/PDF-109.pdf
* What is your score on the SF-36 Physical Functioning Subscale (below)?
Normally, your health would be your own concern. However, you are using your own "recovery" as evidence that ARV's have an effect on the illness, and thus that a retrovirus is a cause of it. That changes the situation.
Using your own condition for this purpose is problematic on a large number of other ground too: a) ARV's may lead to improvements even if a retrovirus is not a factor (e.g. by killing other pathogens or acting as an immunomodulator); b) even if a retrovirus is a factor in the disease, that does not mean that it is a CAUSE of the disease (most researchers and epidemiologists other than those currently/formerly associated with the WPI appear to believe that any retrovirus present is — like HHV6 — downstream from other problems); c) you have changed lots of other treatments over the past two years; and d) regardless of whether your improvements in Hawaii are due to oxygen or fewer toxins, they suggest that the ARV's have not been all that helpful in allowing you to tolerate a wider variety of environments.
However, insofar as you are going to continue to use your own health status to suggest that a retrovirus is related to this illness, at the very minimum you should be documenting your health improvements in the way that the PACE trial did. If you can't at least do that, then we for sure should say that deconditioning and exercise phobia are at the core of the illness, since they provided more evidence of improvements than you have.
In short, it seems way past time for you to share some specific information about your health status.
Until you do that, please stop using your own case as "evidence" that a retroviral etiology for the disease makes sense.
*
100 points possible
The following questions are about activities you might do during a typical day. Does your health limit you in these activities? If so, how much?
1. Vigorous activities, such as running, lifting heavy objects, participating in strenuous sports
2. Moderate activities such as moving a table, pushing a vacuum cleaner, bowling or playing golf
3. Lifting or carrying groceries
4. Climbing several flights of stairs
5. Climbing one flight of stairs
6. Bending, kneeling or stooping
7. Walking more than a mile
8. Walking several hundred yards
9. Walking one hundred yards
10. Bathing or dressing yourself
Scale: Not limited at all, 0; Yes, limited a little, 5; Yes, limited a lot, 10.
>Hah, The Chalder Fatigue Scale.
Yes, that's going to objectively clear things up
*denote sarcasm*.
Psst, there are more modern ways of measuring the *Signs* of post-exertion states inflicted upon ME patients.
Here was I under the impression Dr Deckoff-Jones described her information as anecdotal.
"From the limited anecdotal evidence we have, I'm pretty sure the response to antiretrovirals, even without specific drugs and without a PI, is better than placebo"
Oh yes, that happened, there was also the careful choice of English which did not deploy certainties.
Say hi to everybody else at Kings College for me :D
-SJ
>@Anon 7:38 AM
ARVs are very unlikely to be more than moderately affective for a handful as we are talking about gammaretroviruses. ARVs attempt to stop reverse transcriptase of HIV, but gammaretroviruses preferentially propagate through colonal expansion. Specific drugs will be needed to tackle HGRVs.
The rest of your questions are useless, as they are all subjective, i.e. have no basis in science.
>The subjective questions obviously are not appropriate with regard to measuring this disease. The Wessely School ones are especially inappropriate.
The point is that Jamie has not _even_ done this, much less anything objective, to give information about her supposed physical improvements — but nonetheless keeps using those improvements to persuade people that retroviruses are at the core of this disease.
If she can't give physical data, the least she could do is give something concrete in terms of specific descriptions rather than "I got better." Anybody could say that, about any treatment. Talk about subjective!
The point is that people think she is basically recovered. If that's the case, fine. If not, she needs to be straight about that.
No one says that if ARV's don't work, a retrovirus can't be a cause or the cause. But insofar as she's using improvements on ARV's to persuade people that a retrovirus is a factor in the disease, she needs to give _some_ sort of more specific information about what she means (subjectively or objectively) by "better."
>Emotions are running high, but the hyperbole is a little over the top. Be very careful that you are not doing the same thing to scientists that you claim they are doing to you. No one is laughing except possibly ERV and she's very juvenile. But, in sideswiping everyone who doesn't support exactly what you want them to support you run the risk of sounding just like ERV.
Learning to disagree without character assassination is something both you and ERV need to work on. You also run the risk of alienating people who are working for the good of the community – just not the way you deem they should. No one is God here to determine exactly how others should act or think. If you want that you need to move to another country.
>@Anon 8:19 AM
There is no point pretending that anything subjective has any relevance to science. It does not. If it is not mind independent it remains subjective.
Jamie has every right to say whatever she feels.
What we need is funding for clinical trials. So you are complaining to the wrong person.
>8:28 (1): Presumably you are talking about Jamie rather than anyone else.
8:28 (2): The ICC ME is the only diagnostic for the illness that we currently have (other than tilt table tests), and the majority of legitimate (non-psych) doctors specializing in the illness are listed as authors. If she were to just go down all the symptoms in the ICC ME and state how she rated on each one (mild/severe), that would be sufficient to answer the question.
Jamie can say whatever she wants, but she shouldn't be using her supposed recovery as "evidence" to persuade people that a retrovirus is a factor in the disease if she won't provide any specifics. It's misleading.
>Dr Jamie published some objective information, from Dr. Snyderman, about the effect of ARVs: here's an external link to the same information. http://trialx.com/curetalk/2011/10/micheal-snyderman-xmrv-positive-judy-makovits-anti-retrovirals-cfs/ if you are really interested, anon.
>Here's what we have in the literature related to MLV's being a factor in the disease:
In the recent BWG paper, none of the labs were able to distinguish controls vs. CFS patients by looking for MLV's.
WPI's track record was random. They called 8/15 negative controls “positive.” They called only 6/10 of their own positives (samples that they themselves had supplied) as “positive.”
NCI's track record also was random. None of the other labs found any MLV's.
In addition, even though all the other labs were able to accurately identify XMRV when it was present (in positive control samples), WPI was not able to do so. Of the 10 "spiked" (purposely contaminated) samples, they only got 7 right.
So their test was garbage. And thus, their original "finding" that XMRV was more present in patients than controls is irrelevant to this discussion.
The only other paper in the literature that suggests that MLV's have anything to do with CFS is Lo 2010. The groups working on that paper were unable to distinguish CFS vs. control samples either. They did not find any MLV's in ANY of the samples. That suggests that their original findings were contamination, since the likelihood that ALL the CFS samples would have been negative on a particular day if MLV's actually are a factor is low (considering the high rate of prevalence in their original data). It thus seems likely that they will withdraw their paper too, though we have to wait to see for sure.
If people want to say that MLV's make sense as a factor in CFS and that they should be explored, fine. People can study whatever they want to study.
But to suggest that we should do clinical trials of ARV's without there being any objective evidence in the literature that retroviruses are a factor in this disease is less than scientific.
It's just absurd.
>@Anon 8:35 AM
It is not misleading when all the facts are known. What we need is a clinical trial.
The evidence already proves HGRVs are associated.
>Jace –
I didn't ask about Dr. Snyderman's condition. Even if ARV's are a factor in his recovery, that doesn't have anything to do with CFS because his recovery measures were related to his CLL. I've yet to see any evidence that he has/had ICC ME, and thus his experiences should not be considered to be relevant to this population any more than the PACE study should be considered to be relevant.
I asked about Jamie's condition. She keeps talking about her own improvements as relevant to the discussion, and so it's a valid question to ask.
>8:54: I don't know what evidence you're talking about. Please share, so that we all can evaluate it.
>@Anon 8:58 AM
"that doesn't have anything to do with CFS because his recovery measures were related to his CLL."
ME/cfs as defined by the CCC or ICC do define a patient population, although they do have their problems. Dr Snyderman is infected with HGRVs. HGRVs are associated with CCC ME/cfs. MLV viruses cause neuro-immune disease and cancer. So how do you know his results have nothing to do with his ME/cfs being caused by HGRVs that have responded to ARVs?
>9:03:
Feel free to attempt to provide published evidence that HGRV's are associated with CCC ME/CFS.
However, there is no evidence, other than what I listed above, so you will be unable to do this.
Unpublished studies, anecdotal reports, and promises from Judy Mikovits that evidence eventually _will_ exist do not count.
>There are 3 published studies that show HGRVs are associated with ME/cfs.
Lombardi et al. (2009), Lo et al (2010) and Grossberg (1997). Hanson also has the same finding.
You are in denial.
The negative paper have now been shown to be totally wrong. VP62 does not exist as it was created from 3 sources. The viruses that have been discovered are HGRVs, although some may have a xenotropic host range.
>Jamie
At some point, doesn't Occam's Razor come into play?
What is the more parsimonious explanation?
1 – XMRV/gammaretroviruses are causes of human disease including CFS but that conspiracies by the government, big pharma, academic virologists, and now even WPI and CAA are working to deny and suppress this knowledge.
2 – Dr. Mikovits' findings were confounded by contamination.
Sometimes, in science and medicine, we have to abandon our convictions in the face of new data.
There was a time, not long ago, when just everybody new that postmenopausal women needed to take replacement hormones to reduce their risk of heart disease. Until the data showed that wasn't the case. Many physcians and researchers were surprised by that finding, but medical practice changed very rapidly in that field in response to the new data.
There was a time when everybody knew that it was important to give lidocaine during an acute MI because it would reduce the ventricular arrhythmias that are the most common cause of death from MI. Until studies showed that giving lidocaine during an acute MI increased mortality.
Since you have CFS yourself and since you crossed the Rubicon of taking antiretrovirals, it is understandable that you have developed strong feelings and convictions on these matters. But–and you may not appreciate my input–from the viewpoint of this disinterested outsider, explanation #2 looks much more plausible.
-Joseph
>The reasons why Lombardi 2009 and Lo 2010 are inappropriate to include as evidence for there being a link between CFS and MLV's are listed above.
Since none of the labs were able to find (beyond random chance) any connection between CFS and MLV's in the recent BWG study, it seems the results of the original studies were due to contamination.
If the labs involved wanted to object to the methodology used in the study, they should have done that upfront. I've yet to hear any of the researchers involved object at all.
And certainly, they should have used their best test in the study. Personally, if I thought they used a substandard test, I'd be pretty angry at them for not giving it their best shot.
The only time I've ever heard anything about Grossberg 1997 is on this blog. "Hanson" is a new one for me. Please give the cites.
A problem in this community at the moment is that people are saying all kinds of things without backing them up. It's at minimum misleading and (it's starting to seem) in some cases purposely deceptive.
It thus seems time to start providing references for everything.