I was in Reno last week. It was an honor to be there to meet Dr. Lipkin and hear about the study from the horse’s mouth. I also had the rare opportunity to listen to him brainstorm a little with Frank Ruscetti. It had a historically important feel to it. Dr. Lipkin is committed to being the perfect referee, “agnostic”, but I thought I saw the glint of desire to dive in to the discovery process. Dr. Ruscetti is a rare human being who sees his work in the context of the big picture. He is a realist, who never loses site of the patients that are the reason for the work in the first place.
The study, at a cost of $2.3 million, is designed to answer two questions:
1. Do XMRVs, and/or polytropic MLVs, exist in humans?
2. If so, do they occur at higher rates in CFS patients than healthy non-contact controls?
25 patients and 25 controls are being selected by 6 doctors, Montoya, Kamaroff, Bateman, Klimas, Levine and Peterson. Inclusion criteria are very restrictive to a particular subset of CFS that includes sore throat and lymphadenopathy. Samples will be split in Dr. Lipkin’s lab and two from each patient will be sent to 3 labs, the WPI, Lo/Alter and Switzer, where each lab gets to do their own thing. The study will be concluded to be positive if any lab can find 2 positives from the same patient. Discordant results will be decided with a third specimen.
I think we are OK, that it’s a fair playing field. The most commonly asked question in the patient community right now is with respect to the possibility of specimen tampering at points of inception. Even if that did happen at one or two sites, it would skew the stats, but wouldn’t cause the study to be completely negative. It is wrong that so much rides on one study, that nothing else will go forward until it is completed, and that one man has been made judge, jury and executioner, though I came away with the impression that he was a good choice for a difficult task.
Drs. Mikovits and Lombardi, Max, Shanti and Svetlana, have their work cut out for them, 600 specimens, each needing multiple tests. The best possible outcome for the patient community is that the WPI finds XMRVs/HGRVs at a higher rate in patients than controls, that Lo/Alter find the Ps at a higher rate in patients than controls, and that Switzer finds nothing, as expected. Dr. Lipkin mentioned more than once that, when the study is over, there will be a valuable repository of specimens remaining to look for what is there, should the study be entirely negative. At the end of his public lecture, he said that if anyone in the audience wanted to write a check for a million dollars, he’d find out what’s going on; good news, though the comment caused me pain personally, confirming what we all know, that we have the technology, but it isn’t being applied. He lectured about past virus hunts that only took days, also rather painful for this audience to hear. Almost the best news for me was that he said that CFS “smells viral” to him. He is involved in autism research and said that he suspects thimerosal in vaccines may in fact be implicated, not a popular stance with the vaccine companies. Let us hope that when this exercise is over, “the virus hunter” will be inspired to hunt viruses for us.
I had an opportunity to discuss antiretrovirals with Dr. Lipkin and to share my personal experience. He stated his disapproval vehemently. I told him that we had significant anecdotal experience at this point and it appears to be better than placebo, though disappointing in speed and scope of response. I stated my opinion that prescribing arv’s constitutes the usual and customary off-label use of drugs, a decision to be reached between doctor and patient. We obviously disagree completely in terms of whether or not the prohibition against these particular drugs is justified, but, even though he had strong feelings on the subject in the present tense, he concluded it needs to be studied, though everybody agrees that, in the current economic climate, there’s no money for what will need to be a long, complicated study. I didn’t get the impression that he was in any way discounting the possibility of a family of retroviruses with too much sequence diversity to be found when looking with our current lenses.
It was my 5th trip to Reno in 10 months. It was short, but the most stressful for me so far, maybe because it felt so important, though it was good stress, not bad, while it was happening. I felt “on”, but not anxious or consciously uncomfortable. I returned home still feeling strong. The day after I got home to Santa Fe, the Las Conchas wildfire started, now the largest in the history of the state of NM, over 100,000 acres, threatening the town of Los Alamos and Los Alamos National Labs. The air quality has been extremely poor. Here is a picture taken from our house, the night the fire started. The smoke is pluming all over Santa Fe and environs, making the air quality unacceptable for people with pulmonary disease. Mitochondrial disease too, I’d bet.
Despite lots of oxygen, which helps everything during administration and for a while after, I’ve been in crash mode for six days now. First time I’ve gone down for more than a day since December, when I caught a cold after my second trip. No cold now; just CFS. I don’t like to report bad news if it takes away hope, but my commitment is to reporting the truth. Sleep, always a sentinel symptom for me, was the first to go. Then pain, nausea and orthostatic intolerance have put a serious damper on things. Cognition is the last to go for me, thanking God for the not small favor. Clearly, I am still at risk, despite dramatic improvement over the last year.
Ali has been doing better since starting Meyer’s cocktail with Leucovorin, plus glutathione, IV pushes and supplemental oxygen by high flow concentrator (10L/min delivered by non-rebreather mask). She does an hour or so of oxygen a day, and the effects are so immediate and positive that she doesn’t have any resistance to doing it. At this point, we both consider the concentrator a no-brainer. She hasn’t tried the chamber yet. I’ve been going in about twice per week and using normobaric oxygen by mask about twice a week as well, and I haven’t decided yet whether I think the chamber adds enough to justify the expense/trouble or not. Ali had a friend visit her for 10 days recently. She used supplemental oxygen ad lib the whole time, was much more active than she has been able to be since last fall, and didn’t crash afterwards. She remains more resilient, despite the fire. She is wanting to get out of the house and just ordered some protective masks that she hasn’t tried yet, which people are wearing in Santa Fe now anyway.
Ali’s MCS symptoms are subsiding somewhat and, if not triggered, she is doing really well. She can wear clothes from the dryer again, though choice of laundry products is crucial. She and I both believe that her symptoms are not triggered by chemicals per se, but certain strong odors, so hyperosmia, much the way some patients have hyperacusis and photophobia, which are also cranial nerve dysfunctions. I believe these sensory symptoms to be related to dysregulation of the cranial nerve afferants, which are relayed through nuclei in the dorsal brain stem, and then to the thalamus, which integrates sensory information to the cortex, regulates arousal/sleep and organizes/controls the timing of the brain’s circuitry. The heightened signal triggers what can be thought of for practical purposes as a subclinical seizure. For some, the instabilities in the brain stem can progress to observable atypical seizures or even full blown tonic-clonic seizures. Here is a study by Frank Duffy at Harvard showing coherence abnormalities on QEEG (measured on the cortex), in patients with CFS, not seen in depressed patients: EEG spectral coherence data distinguish chronic fatigue syndrome patients from healthy controls and depressed patients. Duffy/Kamaroff. Inability to detox properly is likely a piece too, but in Ali’s case, I think that the reactive dysautonomia is triggered by input from the first cranial nerve, rather than a reaction to a toxic substance.
I leave for Hawaii later this week to see patients, looking forward to sea level and clean air. My patients all know I’m sick. When I hear their histories, I often remember exactly how that symptom felt to me, even though my illness has changed a great deal as it has progressed. They know that I don’t have the answer and that I don’t believe there will be a cure. Healing and curing are not the same thing. What we do have to fight with is a coherent model from which to plan a strategy for each person from where they are now. It will be two years soon since Lombardi et al was published; it has been nearly shot down by politics, not science, and nothing has changed from a treatment point of view, other than antiretrovirals haven’t turned out to be the slam dunk for anyone, including me, that we needed. Of course there are hundreds or thousands of drugs sitting on pharmaceutical company shelves right now that might work, but so far, nobody is looking.
Despite my disappointment (not surprise) that the science is not keeping up with the medical need, I remain hopeful and determined. It won’t be fast enough, but I do believe they will get it right this time, even if the route is circuitous. The scope of the discovery is spectacular in terms of the impact it will have on our understanding of chronic disease. It will transform many fields of medicine, but especially psychiatry, which still views our symptoms as arising from a defect of character. We are the ultimate mind body experiment, and it’s not about character, or lack thereof, that our psyches are too closely linked to soma, the body. There is a biological basis. Heightened senses come with the territory. The misunderstanding, even derision, from our supposed caregivers has caused great harm. It is one of the most painful truths in my life that should I be forced to seek help from my colleagues in the conventional medical world, they will likely laugh at me, not to mention do the wrong thing. But there is redemption in turning suffering into meaning, in using painful experience to become wiser. The disbelief has caused terrible isolation. Healing, separate from curing, is possible, in connection with the truth, and in connection with other people who understand and care.
We must never forget that we may also find meaning in life even when confronted with a hopeless situation, when facing a fate that cannot be changed. For what then matters is to bear witness to the uniquely human potential at its best, which is to transform a personal tragedy into triumph, to turn one’s predicament into a human achievement. When we are no longer able to change a situation- we are challenged to change ourselves…
~ Viktor Frankl in Man’s Search for Meaning
>I really wish there were local docors that wouln't mind to try something, anything. i can't even have oxygen. Apparently the local metabolic/ mitochondria clinic "doesn't do" ME/CFS.
Writing to my government and telling them of the 25% increase of cases of MECFS over the last 5 years, for. Total of 414 000 people with the disease in Canada gets me no answer, and likely will give us no funding.
This political will to NOT recognize ME/CFS and to broadcast loud and clear that the disease is of psychogenic origine has gone criminally viral, so to speak. Sadly, millions of people and their families are paying the price.
Thank you for checking in, Jamie.
>Thank you for interesting blog!
This maybe interests you:
http://www.ncbi.nlm.nih.gov/pubmed?term=Weitzberg%20E%5Bau%5D%20spinach
Check out also chewing gum to make enzymes after eating nitrate
What do you think? At least it is easy to try, and if it helps even just five percent even that is great :-)
>i dont understand the one million dollar comment. haven't the whittemores raised and spent millions on CFS already? haven't others raised money? why is lipkin saying he can find out "whats going on" if someone donated 1 million dollars?
>if it is really the case that lipkin needs only 1 million dollars to find out what is going on with us, then we need to start a massive campaign right now (targeting collins) to ask for that 1 million.
that is a no-brainer.
rivka
>The NIH gives 5 million yearly for research,so take one million of that and give it Lipkin. All the money has been going to for years has been for psych and stress/exercise testing. All this so they can keep pushing the antidepressants and CBT/GET treatments that do nothing. And we can thank the CAA,the CDC and a few others for that.
>"We obviously disagree completely in terms of whether or not the prohibition against these particular drugs is justified, but, even though he had strong feelings on the subject in the present tense, he concluded it needs to be studied, though everybody agrees that, in the current economic climate, there's no money for what will need to be a long, complicated study."
Hi Jamie,
Thanks for keeping us in the loop.
I often watch talking heads on TV say the United states needs more jobs, or better education, or companies can't compete. Frankly, I attribute a majority of the lackluster economy due to people being so dang sick. I have watched so many people decline, and have witnesses dysfunction in corporatations first hand. It seems to me, part of the economic hardship is due to illness. One can look at the escalating costs of health insurance as an indicator since the mid 80's.
To me it is penny wise and pound foolish to try and pinch pennies around XMRV research. There are too many lives at stake and the economy would be much stronger if people weren't so dang dysfunctional from infections. In my mind, we would be better off as a country scrapping all the bank bailouts, the war machine, or subsidies to big pharma through medicare part D, and bailout the health of people with a moonshot on research into HGRV's.
Of course my opinion is diametrically opposed to the establishment, but in a perfect world. It would be the best approach to solving the root cause of the problems.
My two cents
Mark3981
>Jamie,
Did you get an oxygen scrip for the plane trip from Hawaii this time? I remember you said that helped on an earlier plane trip. Thank you so much.
Joy
>Hi,
As usually i read your blog with lot of interest. Thank you.
Your mentioning Lipkins: "He is involved in autism research and said that he suspects thimerosal in vaccines may in fact be implicated, not a popular stance with the vaccine companies" You got my complete attention! Where did you get the information that he suspected Thimerosal in vaccines ?????? Is there any link to a study or articles which he has written about this topic ?
Thank you
>Anonymous 4:38 PM,
The Whittemores spent millions for a translational research and treatment center for all neuroimmune diseases, where patients could be treated with dignity, even before we have the answers. The institute was never intended to be focused only on XMRV. We recognize that every piece of the puzzle matters and, in the meantime, scientists, and physicians will work together to bring answers to neuroimmune disease.
The million dollars that Dr. Lipkin was referring to is what it would take for the deep sequencing necessary to really answer the question of what's there with respect to retroviruses.
Jamie
>Laundry for Ali – get fragrance free laundry soap, any brand, and never use fabric softener. Do not use the stuff in the dryer to stop static. Static is harmless. Fagrance is not. This works for me. I also have problems with any fragrance used in the laundry. For some reason chewing mint gum relieves my head pressure. Go figure. Finally, I have been diagnosed with blockage and reflux of blood in the veins leading OUT OF my brain. We suspect this blockage is caused by infection and inflammation. Who knows. I don't know if I am going to go for angioplasty of these veins or not. If the infection and inflammation is ongoing I will just have to be angioplastered again.
Paula
>I asked my Dr about Rx'g me an oxygen concentrator once, she said no because there are "risks" involved if I didn't truly need it. I didn't quite understand what she meant by that. I do know one place I could get one, but it is not portable and pretty heavy and $500 and I have no idea if it would help my energy or not. My next line of attack is to start a special B12 nutritional protocol.
Hope you get your energy back soone Dr. Jamie.
>I forgot to add, I do believe vaccines are on cause or trigger of CFS, mine certainly was…I got an MMR vax at age 18 for college, then within 24 hrs got Acute Mono. Was never the same since. Managed the best I could throughout my 20s but have been getting progressively worse, no longer working, and now in my mid 30s.
>I think patients are aware that WPI's focus is to treat neuroimmune disorders. I also think we need the answers regarding XMRV or HGRV's. I know many people who are sick in my area and the numbers increase yearly. If there is even the slightest chance this a contagious retrovirus then that answer needs to come sooner rather than later. There are a large number of people sick with neuroimmune illnesses that can be treated regardless of xmrv status. You are carrying the retrovirus Jamie and so am I. We also need answers to that!
>Sadly i must state that the design of the study is hopelessly inadequate.The cytokine profile demonstrated upon examination of patients supplied by Dr Klimas and Dr Bateman to trials are at complete odds with the cytokine profiles demonstrated in the recent study by Mikovits et al which exist in xmrv positive patients.One must remember that CFS is a metaphor and not an objective diagnosis.The cytokine profile demonstrated by the patients of Klimas and bateman is suggestive of a herpes virus infection and or the effects of prolonged elevation of stress hormones.The cytokine profile of XMRV positive patients resembles that of patients with a disease caused by HTLV1.This is a TH17 bias.The raised Il-2 levels found in xmrv positive patients indicate a chronically activated immune system which is the same picture which results from a HIV infection.Unless some form of objectively measureable inclusion and exclusion criteria are developed then the heterodgeneity of the study population will lead to yet more confusion.To restore the balance and exclude bias then the patients treated by Drs Bell and Chaney must be added.Their patients have been shown to contain a hgrv positive population and the patients of Levine bateman and klimas have not.To eliminate potential bias from different diagnostic criteria then the design needs to be ammended in the way I suggest
Otherwise we will have the argument that the latter doctors dont treat the same patients.
If on the other hand their patients do not test postive but the patients of dr Chaney bell and komaroff do then the argument is over they do treat patients that are objectively different .We can then also demonstrate that methodology is crucial in detecting HGRVs
As the study stands those answers are unobtainable
>I agree with Rivka. Let's launch a big campaingn to demand $ 1 million NIH "CFS" money to go to Lipkin to get us answers!
>A question about the Lipkin study — are the samples being blinded, meaning no one but Lipkin knows which are patient samples and which are controls? That would seem the best way to solve the question once and for all. If WPI continues to find XMRV in higher percentage of patient than controls, not knowing which is which, that would be pretty conclusive to me.
>Yes, Shelli. The samples will be blinded and not uncoded until the conclusion of the study. I should have said that.
Gerwyn, I am also a little concerned that the study is limited to a restricted cohort, but as it is structured, any 2 positives from the same human being, even a control, meets the definition of a positive study. A positive study means research will proceed, fundamentally more important than the association with CFS, which will work itself out once there is a conclusive test for the presence of virus in humans. Since both the WPI and Lo/Alter found virus in controls, as well as patients, it seems to me, we should see a positive study. If the association with this particular group of CFS patients is also shown, that would be wonderful.
Jamie
>Some people believe that some doctors see a much different cohort of patient. i am afraid that HGRV does not discriminate according to which doctor you see.
There seem to be sme sort of supremacy within a certain patient group, which seem to think that other patients don't have what they got. Sadly, whether you call it ME, CFS, CF or fill in the blank, we all got a few things in common: the suffering, the lack of research, the lack of medical care.
Worse is if other patient's views diverge from the supremacists, they get bashed, harrassed and insulted.
i just thought I would put it out there.
Remaining anonymous in fear of being bullied.
>Several patients have pitched the idea of raising a million dollars to hand to Lipkin on a silver platter. This smacks of desperation. We need to hold ourselves to a higher standard of holding people accountable, like we do to the CAA and other organizations we scrutinize with a fine toothed comb. Just because he seems to be "agnostic" doesn't mean he should be given leeway, especially when what Lipkin does with that money has such severe repercussions on future research into HGRVs.
At the very least, we should ask for specifics in line with the specifics we are demanding for this $2.5 million study and we should ask him to list out milestones so that we pay him only at the completion of each milestone and not one lump sum at the beginning for him to work with willy-nilly. If he is a professional virologist, which he certainly seems to be, he should have a blueprint in mind for how to attack this and should have no problem with this setup.
I'm just a laymen when it comes to scientific studies, but this is how accountability is maintained and payments doled out in contracting and in this case, Lipkin regardless of his credentials, is still an independent contractor.
>sorry jamie i,m afraid that I disagree with you on this one
The study is designed to answer two questions
whether HGRV,s exist in the human population
Lo alter answered that question the sequence variation rules out contamination
the other question is whether hgrvs are found at a higher rate than in controls inpatients given a label of cfs
As we both know cfs is just a descriptive label.In the absence of the use of differential diagnosis all we have is people with with abnormalities of different aetiology being given the same totally subjective label
Unless objective differential diagnoses are employed the study is a total disaster just waiting to happen
>Gerwyn, why don't you tell everyone how you improved by 80% with b12 injections?
>well it was a little more than that
the myers cocktail started the recovery and a range of mito suppliments iv magnesium etc
>I am glad that we are openly talking about how to design the study against fraud and error. It's common sense.
There are billions of dollars at stake. There is a history of misconduct concerning the denigrated diseases and in medicine in general. Questions about the blinding protocol are not merely reasonable; in my view, they are necessary and overdue.
There are likely simple and inexpensive measures that can be used to blind the study further. We should seek to eliminate suspicion of error (reversing cases and controls, anyone?) and fraud as much as possible.
As they are simple and inexpensive, this should be welcomed by everybody (in public anyway).
There is a group of professionals that have the knowledge and skills to do this properly, and it isn't virologists or bureaucrats. It's cryptographers. They design blinding protocols and eliminate fraud using algorithmic measures like SHA-1 hashes and physical measures like tamperproof vials. This is what they do.
One of their principles is that if it is not necessary to have to trust a person or a group, the protocol should not make it necessary. Are we sure this principle is not being violated?
Some think all players are honorable and won't make errors; others don't. But it doesn't matter if the protocol is designed properly. You are not saying everybody in your neighborhood is a thief just because you lock your door. It's common sense.
Let's get the exact details of blood draws, couriers, pseudorandom number generators and numbering protocols if any, tamperproof labels if any, tamperproof vials if any, cryptographic hashes if any, who opens the mail, sample handling procedures, and so on published openly? If the study has already been designed, it should take a few hours at most. Then we can run it by cryptographers we trust.
That's not to say many, many people won't ask questions like "what individuals are deciding to fund only non-replication studies?" and "where is Lombardi et al. CCC + biomarkers in this study?"
But let's eliminate issues with the blinding protocol for this and every other study in medicine that affects millions of lives and billions of dollars.
>CFS is a label and a slave name given by the CDC with the approval of the CFIDS of America. That's who we can thank for the name and the definition. The fact remains that many with the CFS and I believe fibromyalgia labels will most likely be positive for an HGRV. Once confirmed the name will change at that point just as it did with HIV. There will probably be a small subset that have been misdiagnosed as well. Regardless no one wants anyone left behind and WPI has said it is committed to helping all with neuroimmune illnesses.
>anonymous wrote:
"Your mentioning Lipkins: "He is involved in autism research and said that he suspects thimerosal in vaccines may in fact be implicated, not a popular stance with the vaccine companies" You got my complete attention! Where did you get the information that he suspected Thimerosal in vaccines ?????? Is there any link to a study or articles which he has written about this topic ?"
Dr. Deckoff Jones is either lying or spinning what she wants to hear. Lipkin has been instrumental in studies disproving the role of vaccinations in illnesses.
Duh!
>Dr. Deckoff Jones said "He is involved in autism research and said that he suspects thimerosal in vaccines may in fact be implicated, not a popular stance with the vaccine companies."
Lipkin NEVER said this. He was emailed regarding this statement. So, it would indeed appear that Deckoff Jones is either lying or spinning what she wants to hear. She does this a lot as far as I am concerned. I find it very difficult to believe much of what she writes anymore.
>There were a couple of hundred other people there. I wrote that from memory, not notes. If I am mistaken, about this or anything, I apologize.
I am growing really weary of being judged when all I've ever tried to do is share my thoughts. Nobody has to agree and I could be mistaken about anything. I have no agenda other than to try to help in a situation where there is no help.
Jamie
>So what other things have you been mistaken about?
You chose to share this on your blog. Be a big girl and realize it's a tough world out there if you're going to write a blog.
I'm surprised that you weren't aware of his background.
>This is what I remember him to have said, in a public lecture. I believe the video is posted on the WPI website, but I haven't looked at it.
What's your problem? This is a blog, not a scientific journal. I could be wrong about anything. I do the best I can in a vacuum.
Don't worry. There won't be much for me to get wrong for quite a while. All investigation is pretty much stopped until the Lipkin study gets finished. Another wasted year…
Jamie
>Jamie — if you are going to make public statements about what somebody has said, you should at least get it right. People will copy your blog and then suddenly it will be all over the internet that Lipkin said something about thimerasol in vaccines has something to do with autims. He didn't say this, you made it sound like he did.
We know this is not a scientific journal, but some people are hanging on to every word you write as the gospel truth. You are not working in a vacuum. It was easy for somebody to email Lipkin and ask him what he actually said, why didn't you ask him? If you actually knew anything about him at all, you would have known his true views.
You said there were a couple of hundred people there, but you made it sound like you talked to him personally and he told you his thoughts about thimerasol and vaccinations.
Nobody is judging you; a correction is not a judgement. If it makes you tired to be corrected or commented on, then don't blog, especially when you are trying to present your ideas as the facts of science in your blogs.
We know what your agenda is.
>It's a BIG mistake to ever say "I found something that helps".
Any iota of interest in your clue is smashed to smithereens and seared to scorched smouldering cinders by the withering vengeful wrath of righteous affronted indignant disbelief.
If you ever do, prepare yourself!
>Neurotoxic effects of postnatal thimerosal are mouse strain dependent.
Hornig M, Chian D, Lipkin WI.
Abstract
The developing brain is uniquely susceptible to the neurotoxic hazard posed by mercurials. Host differences in maturation, metabolism, nutrition, sex, and autoimmunity influence outcomes. How population-based variability affects the safety of the ethylmercury-containing vaccine preservative, thimerosal, is unknown. Reported increases in the prevalence of autism, a highly heritable neuropsychiatric condition, are intensifying public focus on environmental exposures such as thimerosal. Immune profiles and family history in autism are frequently consistent with autoimmunity. We hypothesized that autoimmune propensity influences outcomes in mice following thimerosal challenges that mimic routine childhood immunizations. Autoimmune disease-sensitive SJL/J mice showed growth delay; reduced locomotion; exaggerated response to novelty; and densely packed, hyperchromic hippocampal neurons with altered glutamate receptors and transporters. Strains resistant to autoimmunity, C57BL/6J and BALB/cJ, were not susceptible. These findings implicate genetic influences and provide a model for investigating thimerosal-related neurotoxicity.
>Gerwyn, your comments above are really fascinating.
Do you have anything written up that specifically details the differences between the two different groups of patients you mention (Bateman/Klimas vs. Bell/Cheney/Komaroff)?
For instance, you mention IL-2 being characteristic of XMRV+. What specifically is characteristic of the Bateman/Klimas patients?
From what I know of them, I think it would be hard to make a case that Bateman’s and Klimas’ patients are just suffering from depression or stress. I’m more open to the idea that their active infections are related specifically to herpes viruses (as would be expected considering those patients’ demonstrated tendencies toward low NKC activation and elevated EBV/HHV6 IgG's).
This brings me back to this paper of yours, which discusses interactions between XMRV, herpes viruses and biotoxins.
http://imeassoc.com/Cause_of_ME_outbreaks_.html
My impression is that a high percentage of Bateman’s and Klimas’ patients are local to (respectively) Salt Lake City and Miami. While both of these places do seem to have some issues with the toxin related to the Incline Village epidemic, everything that I know suggests that those cities are not nearly as problematic as certain other places (such as Tahoe, Bay Area, Boston, DC, Dallas or many towns on Lake Superior or Lake Ontario). And my understanding is that the other doctors mentioned (Cheney/Bell/Komaroff) focus more on extremely ill patients, drawn from across the U.S. and (from what I have informally observed) mostly living in particularly problematic areas. (It would be really interesting to see from those doctors a list of where their patients indeed are living.)
Your "Outbreaks" paper seems to suggest that our “mystery toxin” (apparently related to Harmful Algal Blooms) might cause herpes viruses to flare first, and that the combination of additional toxic exposures and the herpes viruses might then activate XMRV. My guess would be that getting XMRV activated enough to actually show in the blood might require a particularly large amount of inflammatory stress, such as a big exposure to the toxin and subsequent rip-roaring herpes infections (or, I would guess, other similarly inflammatory infections such as Lyme/mycoplasma/candida/etc.).
Would this be at all consistent with the cytokine abnormalities that you’re referencing here? Do you have any thoughts?
Thank you for your continued work with regard to ME/CFS, XMRV and everything else. I really appreciate it.
Best,
Lisa
>I tried to post a question to Gerwyn, but the spam filter seems to have eaten it.
>If Lipkin is well known for disavowing the harmful role of vaccines in illnesses while doing research that substantiates otherwise, it makes one wonder if he is bought and paid for by special interests.
>It has been stated again and again and again that this blog is nothing more than personal opinion. The byline at the top of the page states the intention, the posts have reiterated it again and again, and apologies have been made in advance for any inaccuracies that the posts may contain. Frankly, if a person can't comprehend that and takes what is written as gospel truth, then the blog itself is probably well beyond their grasp. Not the profile of a mover and a shaker who influences others' thought I wouldn't think, so not a lot to get concerned about there.
It's incredibly patronising to assume that there are readers here who are incapable of independent thought. We may be ill and we may be desperate for answers, but please don't assume that we can't assimilate what is written and separate fact from opinion.
Disagree with what is written and challenge and discuss it all you like you, but don't cross the line to watchdog on the behalf of other readers. After all, who are you? What are your credentials? All that comments attacking what has been written (usually anonymously) really demonstrate is a lack of emotional intelligence and maturity. I want to read intelligent discussion here, not crusades to discredit by the emotionally immature. I don't mind if the posts and comments contain inaccuracies. I’m fine with that. I'm aware that it is mostly opinion, and I'm most certainly capable of separating fact from opinion. It’s really useful to be able to read what is written by someone who is at the coalface as it were. This is useful information for us.
So why don't you just email the personal attacks to her in private instead of hijacking all the discussions? That way you’d get to call her a liar directly, we wouldn't have to feel patronised, and she'd have the option of blocking you. A win win win situation.
>Anonymour 4:21 PM.
This is a 2004 abstract, not a study where, Dr. Lipkin PROPOSES further investigations on the vaccination autism link. This culminated in several studies where he found no link between Autism and vaccinations.
http://www.washingtonpost.com/wp-dyn/content/article/2008/09/03/AR2008090303396.html
Duh.
>"If Lipkin is well known for disavowing the harmful role of vaccines in illnesses while doing research that substantiates otherwise, it makes one wonder if he is bought and paid for by special interests."
I think it's all part of the game. If your ideas are not supported by mainstream, it's safest to say you are "agnostic" when it comes to controversial issues.
This is not to bash Lipkin. I think this technique has worked well for him. He has a big name since he can get support from both patients and scientists on all sides. Who knows what his true views are, but it's obvious he is good at marketing himself and making a name for himself over the years.
He is one that is careful to not make bold statements in public. However, I could see him saying, "It's possible that thimerosal plays a role in autism."
>"This culminated in several studies where he found no link between Autism and vaccinations."
They were looking into Wakefield's claims, not thimerosal.
Duh.
But nothing to this date has proved or disproved that vaccines can cause or trigger Autism. However, there is a lot of anectodal evidence that it can trigger an onset (which I'm sure you absolutely hate since you probably assume the public couldn't be right).
"Mother's always know best, unless they have a child with Autism."
>@ anonymous 9:11 PM.
You are showing your ignorance of the scientific method.
Read the above post. Lipkin never said he thought vaccines and autism were linked. He said this question needed to be studied since the effects of "ethylmercury-containing vaccine preservative, thimerosal, is unknown"
The conclusion says:
"These findings implicate genetic influences and provide a model for investigating thimerosal-related neurotoxicity."
Simply stated, further studies were needed at that time, which was 2004. This is exactly what happened over the years and Dr. Lipkin concluded that there isn't a link between vaccinations and Autism.
It's a tremendous leap in logic and rather silly, don't you think, that changing views in science smack of a conspiracy. It's how science works.
I will say the same thing as the above poster.
DUH!!!!!!
>@ anonymous July 4, 2011 8:00 a.m.
You wrote; "I find it very difficult to believe much of what [Jaime] writes anymore."
Fine. Then buzz off. You'd be doing a lot of people one hell of a favor.
ABC
>Wow! I've been off this blog for a couple of months…I just got tired of all the vitriol. Now I come back, enjoy reading a few of Jamie's new posts, and then make the mistake of reading the comments section again. So many aggressive, hostile comments! I realize we are all sick and tired of being sick and tired, but can't people just try to be gentle and respectful with each other? Now I'll duck and wait for the rotten tomatoes…or just ignore the comments section from now on. Such a shame. This forum has such potential for useful exchange.
>I agree with ABC above. My advice to those who say they find it difficult to believe much of what (Jaime) writes anymore,,,,,,is to go find a new blog where you do believe what is written. That should make you happier and it will certainly make those of us who support Jaime happier. We don't enjoy reading the rude way you attack someone we care about and respect.
Thank you Jaime for the time you put into this blog. Thanks for sharing your thoughts. Many of us appreciate all you do and we support you.
With Sincerety,
Paula
>Don't get discouraged Jamie. Remember, the playground is a big place with a few bullies and and a lot of friends.
Disagreeing is great, but let's be civil and polite about it.
Best,
VSparrow, in Montreal
>Personally I like a debate – I think it's healthy for the participants and the watchers to consider views other than the ones they already hold.
Sylvieromy
>@ anonymous July 4 10:25pm
You're showing your ignorance in reference to anyone appointed to oversee a CFS study…
i.e."government-appointed" equals "automatically suspect".
Oh and BTW, get a grip!
>Dr. Jones…
This is something your friends at the WPI should keep their eyes on:
Megapixel digital PCR
http://www.nature.com/nmeth/journal/vaop/ncurrent/full/nmeth.1640.html
"The new digital polymerase chain reaction (PCR) device uses liquid surface tension, rather than systems of microscopic valves, to partition DNA samples into arrays of 1,000,000 chambers or more. The device enables the direct counting of single molecules isolated in individual chambers.
The density of reaction chambers achieved by the platform exceeds more traditional valve-based digital PCR techniques by a factor of 100…"
http://www.sciencedaily.com/releases/2011/07/110703133842.htm
Jerry and Carol
>What a great post! Thank you!
I am very glad to hear that Ali is doing somewhat better! And thinking of you guys during this awful fire.
I agree that it really is too bad that we don't get the appropriate money for bona fide ME research. It made me angry when I read the NY Times article on Lipkin a few months ago where it said that all it takes is a few days for him to sequence all the genomes present in the blood a group of patients which then tells him what viruses are there that are not in the blood of normals. The example they used was of a new disease that affected two or three people that he 'solved.' Why can't we get the money to get this done for the 17M+ wME?! Do you know what the study Lipkin is doing with Prof Montoya to find viruses in ME? Does it have anything to do with this technique?
>btw- my first question was rhetorical, but pls answer the last two if you can.
Thank you,
Justin
>Me again. Also: $2.3M sounds like a lot for this study even though there is a lot of work to do and some goes to overhead. May I ask, is WPI getting a third? What's your take on the cost?