The Singh paper was yet another study where an apparently decent scientist proved beyond a shadow of a doubt that she couldn’t find XMRV in anyone. Or at least that she couldn’t find a VP62 plasmid clone in any CFS patients or controls. But since she did not use a human isolate as a positive control, her results are meaningless. She also proved again that a test derived from monkey antibodies to a VP62 clone doesn’t detect anything in humans. What she didn’t prove is that XMRV and other similar viruses are not infecting humans and she certainly didn’t prove anything that doctors or patients should care about with respect to their treatment decisions. That she would presume to comment is outrageous.
It hurts more because she seemed to be our friend. I met her in Reno last August. She was very excited by our responses to antiretrovirals, chosen because of her in vitro drug testing paper. Interesting that she was able to find XMRV in human tissue when she was studying prostate cancer in 2009 (XMRV is present in malignant prostatic epithelium and is associated with prostate cancer, especially high-grade tumors. Schlaberg/Singh). Odd that she so recently applied for a broad patent with respect to the virus. Then she stabs the WPI, a collaborator, in the back. Very peculiar behavior. My best guess? Follow the money.
In my opinion, the scientific community is still asking the wrong questions. It is important to validate the original work of course, but that is a very small part of what needs to happen. Given that it is obvious from the pathology that we are dealing with one or more previously unrecognized retroviruses, most likely simple animal retroviruses that jumped to humans in some way, the correct question is, which virus or viruses? Not how do we make this one go away so we can all go back on coffee break, rather than recognize the public health disaster in front of our noses. Pretty poor performance, even for government work.
Since the science is progressing glacially, it is not possible for me to evaluate what antiretrovirals are doing for me now, having taken Viread and Isentress for more than 14 months. However, I am approaching 90% of function this week, still in Hawaii. I have been out every day, most of the day, for 12 days. I went snorkeling (a little). I have walked up some steep hills. I have had no PEM. Only very brief episodes of feeling sick, which are not severe and pass quickly. I am eating, sleeping, dreaming normally. I am not short of breath at rest, or even with reasonable exertion. I am very deconditioned, but feel like I can start a measured program to get back in shape. I am choosing upright and the usual energy calculation that runs through my head when I think about whether to get up or not isn’t happening.
I do think it likely that this latest improvement has something to do with the change in altitude; I became polycythemic when I moved to Santa Fe, which is at 7500 feet. I could exercise and was never short of breath without appropriate exertion before that. It will be interesting to see how I do when I go home this week. It may be that going back up will be good too, due to epo which is anti-inflammatory. Athletes know that going up and down is the hot ticket. I’ve been thinking about transitioning to the islands since I left in 1981, but never seemed to be able to make it happen. Our son is finishing up the 11th grade, doing really well, and we are committed to keeping our home in Santa Fe at least until he graduates. But life is full of possibilities again beyond the bed and the couch. My life has improved immeasurably from the positive XMRV culture I received from VIP Dx a year ago January.
Sleep architecture is an important indicator of severity of illness in ME/CFS, certainly for me, but for many others as well. I had been sleeping better for some time before this trip, so the improvement I’m experiencing isn’t all from palm trees and tropical air. It is hard for me, currently beating the odds (knock on wood), to believe that antiretrovirals are hurting me. Though it is possible that I have improved further from going off AZT, I still believe that it helped me in the beginning. It should be remembered that an efficacious treatment paradigm may turn out to be completely different from what has evolved for HIV. It may be possible to take antiretrovirals for a time to knock it back, clean out reservoirs, in conjunction with other things that are conducive to proviral latency. Even inhibiting replication, provirus is sitting there silent, or waving in the breeze. Our knowledge of HIV suggests there are things we can do to encourage latency. Our observation of the disease over decades has taught us that the balance can be tipped in our favor in various ways. Working with the internal and external environments is crucial for recovery.
As for Dr. Singh’s desire to practice clinical medicine? I guess she thinks this patient should not be allowed to continue his meds. From my email this morning:
I tested positive for XMRV. I have been taking zidovudine, tenofovir, and raltegravir for just over 5 months. I started over a 2 1/2 month period and I was on all three by January. Since the end of January, I have experienced very short periods of unmistakable clarity and no symptoms (much more pronounced compared to any period of reduced symptoms that I may have experienced in the past twelve years that I have been ill).
I wish I could report that Ali is doing as well as I am. She didn’t change noticeably one way or the other from stopping AZT. She is in no way as sick as she was when we started this journey. She is stable, but still just below the surface. She has been having some MCS symptoms recently. We are going to step it up again, considering mild HBOT, Meyer’s cocktail/glutathione IV’s and possibly Nexavir. Ali has inflammatory skin stuff and Nexavir is indicated for skin problems; always good if a therapeutic option addresses more than one problem. She only needs a small additional increment of improvement to be able to get a life again. She is hoping to experience Hawaii too. Neither of us would stop the things that have helped, Actos, Deplin, B12, vitamin D, bioidentical hormones. Nor do we have any inclination to stop antiretrovirals, certainly not on Dr. Singh’s say so. We have done too well on them so far to rock that boat. We need to keep building on our gains.
>If xmrv has nothing to do with ME/CFS then how can you and others possibly have gained any benefit from the anti retrovirals? Clearly you have, so how would Singh explain that? It seems insane to suggest you don't have a retrovirus …
>Re: "The Singh paper was yet another study where an apparently decent scientist proved beyond a shadow of a doubt that she couldn't find XMRV in anyone. Or at least that she couldn't find a VP62 plasmid clone in any CFS patients or controls. But since she did not use a human isolate as a positive control, her results are meaningless."
Yes, and what's interesting is that back in August Dr. Singh said, "It’s just not sufficient to show that something can detect something in a plasmid template. It’s hard to know if it’s going to detect something in a matrix that’s as complicated as blood or cellular DNA."
Big Question 1:
Why did Dr. Singh publish a study in which she used methods that she herself unambiguously deemed "not sufficient" just nine months earlier?
There is an interesting Q&A with Dr. Ila Singh on cfscentral.com. She is absolutely sure that the 300 people tested are not infected. However, she states in this interview that she is "not entirely sure" why she did not find a background rate similar to the 4% figure she found in healthy prostate tissue during her prostate cancer study.
Big Question 2:
How can she be sure and not entirely sure at the same time?
She stands by her previous work of detecting human retrovirus in > 20% of prostate cancer patients and 4% of controls. A quick calculation shows that if there is a 4% "background" infection rate in healthy controls, the probability of having zero positives in a random sample of 300 is 0.00048 percent; basically zero.
She then mentions "different assays" and "different sample types" when addressing the discrepancy between the 0/0 CFS study and the earlier detection of XMRV in the prostate cancer study.
Big Question 3:
Why would the assay and sample type matter when she is absolutely sure the study subjects are not infected in the first place?
>Very glad to hear of your continued improvement and I hope that Ali will soon find the same degree of benefit. Please excuse my memory if I am forgetting, but have you got lab tests to objectively show your improvement? There is a real danger that some people will claim that any improvement on retrovirals is a placebo effect, we wrongly think we are physically ill and then when we get a treatment which coincides with this belief that is making us better hey presto a placebo effect….we really need the objective evidence to prove these benefits are real. Thanks so much for all your work and writings.
>Keep telling it like it is, Dr. Jamie xxx I'm so glad you are able to enjoy Hawaii.
I remember another ME patients forum signature: "If I won an all expenses paid holiday to Hawaii, I wouldn't be able to go" but now you are there. So good, excellent, brilliant. One of us escaping the ME prison at last. Let's hope Ali's treatments are just taking a little longer.
xx jane xx
>Lee Lee – It could in theory be another (or multiple) retroviruses – for instance the DeFretias CAV electron microscope shot was of a totally different size animal to XMRV/MLV family.
But yeah, it appears Singh has been bought/threatened or wants to "rename" the virus & claim it as her own. Makes her patent application look a little stupid.
>We're only at 6900-7000 ft. here, Jaime.
>Glad you are still doing well. Hope your daughter picks up soon. Shame about Singh – but don't see it as a major blow. The BWG will prove that the WPI know what they are about and one would assume the NCI and CDC won't want to be shown up by the upstart WPI and will also be able to pinpoint the positives as well as the negatives – then the wait for Lipkin – who has again done us all a favour I think by a) taking Racienello to task and b) at the same time reaffirming his earlier Agnostic stance.
>You mention bioidentical hormones Dr Jaime. I use a progesterone cream since menopause and was unsure whether to continue. I have heard Dr Mikovits say that XMRV is very sensitive to it. As I live in a 'no testing/lack of interest' zone, I don't know the status of any tests at all, either hormones or infection. Would you recommend as a general rule continuing with the high quality progesterone I use?
Many thanks for your opinion.
Helen
>Singh says that blood is the place to look because blood is where the WPI et al. first found XMRV. But we know from the Macaque studies that this virus leaves the blood very quickly and loves to hang out in tissues. Singh is a specialist at finding XMRV in tissues. So why not look in tissues??? Singh says it would be unethical to take patient biopsies without "evidence". Yet patients are already having stomach biopsies done with at least one clinician who is finding XMRV in their samples.
So we have the Kafkaesque situation where a clinician is getting cutting-edge research results (XMRV in tissue), yet researchers like Singh won't look because they deem it "unethical". The irony is that there is a queue of patients a mile long willing to donate tissue samples.
Having said that for me the main take-home message of this blog has been your progress. It gives real hope to us all!
>Hi Jamie
a great blog.
glad your ok!
Im still hoping 2011 will be the year of answers.
Kate xoxox
>all the following variables were changed by singh compared to the Lombardi study she did not even use the same primers or type of PCR compared to lombardi she did not even isolate RNA
The quantitative reliability of the PCR process is limited by the amplification process itself. Due to its geometric
nature, small differences in any of the control variables will dramatically affect the reaction yield. The variables that
influence the yield of the PCR process include
1. the concentration of the DNA polymerase,
2. the initial concentration of dNTPs,
3. the concentration of MgCl2,
4. initial concentration of the DNA strand,
5. the concentration of primers,
6. the denaturing, annealing, and synthesis temperature,
7. the length and the number of cycles,
8. ramping times,
9. temperature,
10. the presence of contaminating DNA and inhibitors in the sample, and
11. the tube-tube variation.
If anyone really wants to read the background chemistry and physics governing PCR outcomes the link is below!
http://people.cs.vt.edu/~ramakris/papers/JCB-PCR.pdf
>I've been waiting for comments on the Singh study – thank you for writing about it. So glad that Hawaii is good for you; I had wondered about the heat and humidity in Hawaii being a negative, as I've found that a problem when living in another hot/humid environment. At present I'm living at sea-level, but just spent the weekend at 2,750 ft (838m) – it was hard going; the minute I stepped out of the car I felt my legs turn to lead and I could only move really slowly, with some difficulty breathing. Can't imagine living at 7,500ft!
>I don't think saying that Singh 'stabs the WPI .. in the back' and that 'she seemed to be our friend' is very helpful.
As soon as someone comes up with negative results regarding XMRV they are accused of these sorts of things.
And why shouldn't she comment on treatment? Much of the time patients complain because researchers don't comment on the implications of their work for treatment.
It's no wonder some researchers want nothing to do with ME/CFS when they are bad-mouthed like this.
>I hope dr Singh doesn't give up all work on ME CFS and XMRV.
No money is worth that of a human life.
I would do anything to be well, I would work everyday un paid for the rest of my life if I could be well.
>IT CANT BE ABOUT MONEY, IT MUST BE MORE.
is she scared she would get in trouble if she finds this human retrovirus which is likely from vaccines and maybe causes Gulf war and autism and cancer, its no small thing.
John.
>Hi Doctor Deckoff-Jones,
another great blog.
3 cheers for Harvey Alter, who isn't affraid of anything or anyone.
Love from Norway.
>Thanks for your information, Jamie. You remain a beacon for many of us.
As far as Dr. Singh's study goes I believe it remains impossible for us to know where she is coming from. After watching a presentation on line that she did several months ago, I made a remark to several cyberfriends. I felt that her manner was flippant when she was talking about the ME/CFS-XMRV connection and that she was joking around too much. I was immediately shouted down that Dr. Singh is a researcher who is really going to help us. Now that does not seem to be the case.
>Jamie, isn't polycythemia a normal, expected result of living at high altitude? Isn't it the body's natural way of adapting? I ask because I am moving to a place at high altitude soon and have been a bit nervous about acclimating to the elevation. Pre-illness I lived @ high altitude and did great. Now I am nervous since you pin some of your troubles on elevation. Did your hct reach extreme levels or are you using the term polycythemic based on your sensations alone?
>Thank you for another great blog Jamie and its really encouraging to hear that you are doing so well on the ARVs!
>"It's no wonder some researchers want nothing to do with ME/CFS when they are bad-mouthed like this."
I have to agree with anonymous above about the statements about Dr. Singh. By making inflammatory and dividing statements we are only perpetuating the prejudice against our community! I am affected by this disease and so are my children. I am suffering too without medical help and I still do not advocate talking down any researcher whether they are wrong or not.
>I believe that Ila Singh and Judy Mikovits are both good scientists, who are both honestly convinced that they have got it right. And we may get the answer, who has, sooner rather than later.
This is an email response I received from Dr Singh, after questioning whether she would be sending back the 25 "positive" and "negative" samples received from the WPI, back to the WPI, blinded, in order to be retested:
"We have already sent unfrozen aliquots from the 25 individuals that were identified by the WPI, to the WPI for their analysis. We have added a few of our own samples to this set. All have been recoded again. We will see what happens. But as you know, we did not find any XMRV in these 25 samples using our techniques, or those of the WPI. I don't think a more thorough study could be designed or performed. I think the CFS community needs to move on – make their voice heard that finding a cause is important."
I forwarded this email to Dr Mikovits and this was her reply:
"Dr Singh did indeed send samples to the WPI..two days after the paper was published. We received them late last week and do intend to test themSadly she ignored repeated requests by me and Dr Ruscetti to reconcile methodological differences when we learned of her data on April 18th. It is not at all in the spirit of learning the truth to have published these data without trying to reconcile first. I do know that you understand we will in good faith test these samples and while I would like to say that I trust these samples were not in any way tampered with but represent samples aliquoted at the time of receipt that were never opened or thawed in her laboratory. I will confirm those fact before testing. We will certainly report any results we get. There no data to say that there is contamination in any WPI laboratory. You understand a patient is not "contaminated" when we have isolated virus on multiple occasions ..these are not sequences but virions ..actual virus! That is NOT a contaminant. Of course, I understand your doubts why would anyone believe Frank and Sandy Ruscetti and the WPI over the rest of the world? Fair..but know there are others out there who are getting positive results in their patient populations and they have no doubt even with this latest study."
It will be very interesting to see whether the WPI are able to successfully decode these samples. If so, it will renew confidence in their work. If not, the doubts will grow larger. It's hard to imagine that Mikovits could be that confident without good reason, but we'll have to wait and see…..
>Anon said: "I felt that her manner was flippant when she was talking about the ME/CFS-XMRV connection and that she was joking around too much."
I have to agree. It doesn't appear that she acknowledges the severity of the illness. Her study begins by calling "CFS" a disorder characterized by fatigue. This is also the name of Dr Bateman's clinic. Neither mention "syndrome" or ME, nor acknowledge the many other symptoms, such as neuroimmune disorders. And for a cancer researcher, Dr Singh seems strangely uninterested in the fact that there is a high incidence of "rare" cancers in those ME/CFS patients WPI found positive for XMRV.
That she then goes on to say that looking for XMRV in tissue is "unethical". What a leap of pseudo-logic! NOT looking for XMRV/HGRV/MLV in any place it's already been found is truly unethical.
And although Dr. Lo and Dr. Mikovits have repeatedly shown that their results are not the result of lab contamination, Singh et al tried to resurrect that phantom once again.
This whole study, including its bizarre conclusion that completely exceeds the capacity of anyone involved in it, to make (non)treatment recommendations, seems made-to-order to please the CDC, the insurance industry and other denialists who influence the flow of money. Is that what she thinks/knows she has to do to hold on to her prostate cancer funding?
>I too, believe Mikovits and Singh are both good scientists. I just believe being a good scientist is not stopping Singh from having a personal agenda. There is too much contradiction in her words and actions.
>This week, in Palm Springs, I met another person (like me) is mostly recovered from ME/CFS.
She got sick in a house with “black mold” (Stachybotrys) in San Diego. Now (like all the other mostly-fully recovered ME/CFS’ers I’ve met in person) she lives in a home that is so good with regard to toxic mold that I could live there myself and be fine.
She’s traveled around a bit and says she feels best in Hawaii and Palm Springs. She does poorly in San Diego (in winter), Oregon and San Francisco.
She has focused most of her work in getting well on detox-related treatments, including saunas, colonics, herbs, neural therapy, B12/B6/folic acid (promoting methylation), reiki and ozone. (Some of these also address pathogens.)
Altitude has nothing to do with how she feels, she says. And (after doing in-depth interviews with about 20 people who have mostly/fully recovered from ME/CFS), I’ve yet to find anybody else who’s gotten much better as a result of changes in altitude either.
Insofar as people experience spontaneous “Locations” recoveries, I’d like to hear reports of how they do in a variety of locations at the same altitude before making any conclusions.
I suggest starting with Berkeley (183 feet above sea level), as a comparison point.
Obviously it’s extremely important to understand what’s going on with XMRV. But as Erik Johnson’s been saying for 25 years now, until that’s figured out, the “Locations Effect” is a good way to feel better in the meantime.
I’m thus glad to read about people experiencing it and sharing their experiences with others.
Cordially,
Lisa Petrison
lisapetrison at yahoo
>The study in question was heavily influenced by the CAA led by one Miss Mcleary "fatigue" proponent.
The conclusions were not based on any scientific objectivity therefore we can safely say:
We do not all Singh from the same Kim sheet!!
>Hi Jamie! I'm delighted to hear how well you are doing. It gives me great hope for the rest of us. I hope Ali will also find the combination of treatments that will help her return to greater function. It must be so hard for you as a mother to see her continue to suffer while you recover.
At first, when I read about the Singh study, I was devastated, and told my husband that I was afraid it was the "first nail in the coffin" on XMRV (the rest of the negative studies all seemed meaningless to me). Then, I realized that, even if it is a high-quality study, that makes 2 positive high-quality studies (WPI and NIH) and 1 negative high-quality study (Singh). Far from conclusive, that. And of course, the lack of a background rate raises a lot of questions, given that Singh is standing by her prostate cancer results. Finally, reading Ian Lipkin's statement that he remains "agnostic," and that this study doesn't really add a lot of information, washed away all my sense of doom.
I do want to say that I think it is ill-advised to cast other researchers as "friends" and "foes." We can't really see inside their motivations or know what role they may play over the long haul. I can easily imagine that Singh doesn't really "get" CFS/ME, and that she may not be sufficiently motivated to get to the bottom of the retroviral connection, but it is possible that she would, in the course of time, change her view and become a valuable researcher for us.
Thanks so much for everything you do.
All the best,
Agatha
>Unethical for patients to give tissues? I bet that many women here wouldn't mind giving a few cells while getting their annual pap smear- and then it would also try to match the monkey study.
Other tissues available, is colon stomach and respiratory secretions/bronchi. No scar! I have been coughing since January 2010, and because of my diagnosis of ME/CFS no one gives a damn here. so I'd be more than happy to prove them wrong.
Patients would e more than happy to offer their gallbladders, uterus, tonsils when these procedures are being done. Nothing unethical about that.
>What Lisa Petrison said.
I'd be curious Jamie, if you would investigate not only your current surroundings (in Hawaii), but more importantly, a possible hidden mold situation when you get back home.
No doubt some of your other treatments have helped you as well (even the antiretrovirals), but if your feeling so much better in Hawaii, doing so much more than you ever have — then perhaps the mold connection is something you should seriously consider.
>We do not have a mold problem. My husband is a carpenter and a plumber. We have done a fair amount of remodeling. The house is clean of mold. We live in the high desert, outside of Santa Fe, in the country, very dry. Santa Fe is one of the cleanest cities in the country with respect to air pollution.
My Hct has been above reference since I moved to Santa Fe, having been on the low side before that. On AZT, it was normal. I think that due to cellular hypoxia, the change in pressure from coming to sea level is compensatory. My suspicion is that if I stayed here, the improvement wouldn't last. It may be that going back and forth is a good idea however.
Jamie
>Dear Friends,
I am proud to see so many intelligent, sophisticated and well informed comments from our group. Some CFS patients have been shaken by the Shin et al paper. Not me. I googled the background of all the investigators and they are all qualified in their own areas. They are lab technicians, experts in nerve transmission and of course, a pathologist. The laboratory listed is ARUP Laboratories which as per the official web site does the same assays available through Quest and LabCorp.
Compare Shin et al's backgrounds to Drs. Lombardi, Ruscetti and Mikovits who are elite scientists with specific training and a track record in this area of research. Actually, there is no comparison!
Dr. Singh is a respected research pathologist and I look forward to her continued investigation of various cancers for XMRV. Heaven knows why she switched course and decided to write a paper about CFS and XMRV. The methodologies required are way too sophisticated for anyone to do well without a large knowledge base and experience which her group could not possibly have. What should have been concluded is that they did not find or more honestly, that they could not find evidence of XMRV in the context of CFS. This a lot different than saying that it wasn't there which is not a scientifically correct conclusion for her study.
As someone who has benefited from taking ARVs, I find it ludicrous to be told that I never should have. Agreed that ARVs, at least not the ones that we have may not help everyone, but that is not the point at all.
Keep the faith.
Michael Snyderman, MD
>This s*#t where a person or organization can patent a virus or a disease has to stop!!! Dr. Deckoff-Jones, if she gets this patent, could she prevent the WPI or anyone else from investigating XMRV further, especially its connection to CFS/ME? What happened with Lyme disease seems to be happening all over again. How many more people are going to get sick because of this practice? It is so sad that in the United States, profit and acknowledgment (egos) come before people and health.
>In my experience, the "Epo Effect" does not last all that long. I am doubtful that the change in elevation has made the difference. Please keep an open mind that there might be something about your location in Hawaii that is making you feel better. For whatever reason certain locations are better than others when it comes to CFS. I hope you will give that some thought and not write it off as being less stressed in a tropical paradise.
>As far as I can tell, the Locations Effect has nothing to do with conventional air pollution.
The subsegment of ME/CFS sufferers who have chemical sensitivities (for instance, due to the shutdown of the methylation/glutathione system) may be bothered by conventional air pollution. Conceivably, this will lead to fatigue, amongst other MCS symptoms.
ME/CFS symptoms of the type specific to our disease are something different and, I would like to suggest, related to hyperreactivities to specific sorts of toxins that are not measured on air pollution indexes.
For those interested in the sort of effect I’m discussing, I suggest taking a look at the current print issue of Discover magazine. In it, there is an article on the connection between ALS and the cyanobacteria toxin BMAA. It is my belief that this particular toxin also is related to ME/CFS, and that additional outdoor biotoxins (toxins made by organisms such as mold, cyanobacteria or dinoflagellates) are related to our disease as well.
Those interested in how these sorts of toxins might interact with both XMRV and the herpes family viruses in order to create ME/CFS may want to check out this link.
http://www.imeassoc.com/Cause_of_ME_outbreaks_.html
The Locations Effect is something totally separate than living in a moldy house. People can live in a perfectly mold-free house (or in a tent) and still be really sick from what’s going on outside.
The positive effects of a Good Location can be nullified by living in a bad building, however.
If people tell me that they feel much worse when they leave the house (especially if they have panic attacks when they go out), that makes me feel suspect that their residence is likely not the problem.
Best,
Lisa Petrison, Ph.D.
lisapetrison at yahoo
>@Anonymous who posted at 8:47 a.m.: Did you receive permission from Drs. Singh and Mikovits to publicly post their private emails to you? And did they give you permission to forward their emails to each other?
It's great that scientists have been so accessible to our community, and I think we have a responsibility not to abuse their trust.
>I hope science reporters are reading the comments by Dr. Jamie, Dr. Snyderman and others.
>I do not want to be inflammatory, but the mold people are so pushy about what worked for them. Just like certain Lyme people that believe that if you have ME/CFS you must have Lyme and you must go on antibiotics.
This health journey is our own. everyone make a choice of therapy for themselves. If it worked for you, fine. But please, don't push it on everybody on every occasion.
>Interesting post Dr Deckoff-Jones,
I am curious why you chose to use AZT when a known side-effect is suppression of bone marrow function. Given that CFS patients often have low blood volume this would seem like a dangerous side-effect.
But great to hear of your improvement. If XMRV is disproven, to what will you attribute your improvement? Some ARVs do also have regular anti-viral effects, for example.
>Anonymous at 6:49 p.m.:
Thanks for your input.
I don't consider myself a "mold person" though. My illness has included viruses (HHV6 IgG =640, EBV IgG above the top of the chart), Lyme and a variety of other pathogens. My immunological markers are classic ME/CFS (NKC function = 4, elevated Rnase-L and LMW Rnase-L, cytokine abnormalities etc.), and my history is as well.
I took a year's worth of Valcyte and Famvir, and benefited from them. I've benefited from a variety of other treatments not related to biotoxins as well.
I actually have a supply of antiretrovirals in my possession, prescribed by my doctor. I currently am considering whether to take them, in the hope of reducing my mold reactivity further. Perhaps it won't be necessary though — I'm continuing to make fast progress at this point without them.
Whether biotoxins are a problem for everyone with this illness is unclear. My goal is certainly not to push them on other people as a treatment option. Without peer-reviewed literature, no patient should feel pressured to try any treatment option (including drugs to treat viruses). That's just standard medical practice.
My goal in bringing the topic up on this forum and elsewhere is to make the phenomena that some of us have experienced known to researchers and physicians, including by encouraging patients to talk to their own physicians about them.
Hopefully this will lead to a stronger understanding of how biotoxins and viruses can work together to create the disease (or to create a particularly severe form of the disease), as detailed in the hypothesis that Gerwyn Morris provides in the IMEA link.
At the recent NIH presentation, Harvey Alter asked what it was about the host that caused XMRV to proliferate. Per Gerwyn's comments, the presence of other pathogens (such as herpes viruses) and biotoxin issues are candidates for that. Hopefully taking those "terrain" factors into consideration will allow a greater understanding of what's going on, thus increasing the likelihood that the retrovirus will not be improperly dismissed.
Again, thank you for your comments.
Best,
Lisa Petrison, Ph.D.
lisapetrison at yahoo
>I tried posting a comment regarding the comment of Anonymous 6:49 p.m., but it must have ended up in the spam folder.
I bring this up because my intention in writing it in part was to discourage others who have benefited from addressing mold issues from engaging in any sort of combative discussion in this comments section, as a response.
I know of no one who has contributed mold experiences to this forum or other ME/CFS forums who is not open to the idea that XMRV is a factor in this disease.
The "mold people" are not the enemy. And this week, especially, the need for us to work together against the enemies that we actually do have should be especially clear.
Best,
Lisa Petrison, Ph.D.
lisapetrison at yahoo
>Regarding the mold issue here. I lived in a house that was full of mold and didn't realize it. I moved several years ago to a house that does not have any mold. My asthma did clear up when I moved. I had previously tested positive for mold allergy. My mold allergy was diagnosed years before living in the moldy house. None of my ME/CFS symptoms have changed. I also used the questran protocal. This also made no difference in my condition. I recently found out that I am XMRV+. I believe that to be the reason I am ill and not to be related to mold.
>Your post is a breath of fresh air, Jamie.
>Hi Anonymous at 8:02 p.m.
Mold is not an allergen or a trigger. It is a toxin, one shown in hundreds of studies to create illness all by itself.
If you had a huge pesticide exposure, you would not expect to get better just by moving to a place where you weren't getting hit with more pesticides and doing a bit of detox. This is the same thing.
I would not expect you to have made any improvements, based on what you have described.
I don't think it's wise to discuss the phenomenon in the comments section on this blog though. If you or anyone would like to discuss their own situations, please write me privately.
I am not a medical doctor, and so I can only share observations, theory and experiences, of course.
Per my earlier comment, whether mold had a role in your illness is not something that anyone can say for sure, because as of yet no one has chosen to put any study into it. Hopefully that will change.
Best,
Lisa Petrison, Ph.D.
lisapetrison at yahoo
>I did not observe Lisa make any attempt whatsoever to "push" or pursuade anyone to undertake mold avoidance.
This is a very interesting clue which everyone feels free to ignore until this effect announces itself in a most discomfitting manner.
One day, folks realize that 'something' in the environment is taking them apart, and while it's hard to say exactly what it is, it looks like…
Then they join us "Mold people"
Our numbers grow steadily, but not because we talked anyone into it.
Twenty years ago, everyone just laughed scornfully at us "loonies".
Funny thing is, people aren't laughing anymore.
>Another "moldie" here. I certainly wouldn't presume to push my reality onto anyone else. But I have to say, it does disturb me to see the mold discussion shot down in flames every time it comes up. There are those who do well on Valcyte and those who don't. Those who do well on ARVs and those who don't. Those who do well on Ampligen and those who don't. GcMAF, Valtrex, gluten-free diets, mass supplements, Marshall protocol, methylation protocol, and a variety of other lesser known treatments can join that list. But I seldom see discussions of any of these things shot down as quickly and firmly as I do when the discussion turns to biotoxins.
Suggesting that biotoxins could be contributing to illness may help somebody. Maybe not you, maybe somebody else. Same with suggesting anything that you've found does some good. As Lisa pointed out, I also do not know one single "moldie" that thinks XMRV is something that should be discounted. On the other hand, perhaps the fact that there are so many people who are affected by biotoxins that this clue shouldn't be discounted either.
For instance, a large portion of us have EBV involvement. Not all of us. Same with just about every darn thing when you are talking about this illness. Nothing seems completely universal. So why so much variation in pathogen loads? Maybe there continues to be more yet that should be looked into with this illness? And maybe if we amass ALL of the clues, we'll know where to look? Maybe we'll find that XMRV is the puppetmaster. Maybe we'll find that XMRV causes CFS. Nobody has said that yet, not even WPI. Alternatively, maybe we'll find that there is something about CFS that enables replication of XMRV. We don't know!
Not preaching. I just hate to see science driven by anything other than science. Over and out. :)
>Hi Khaly,
I'm glad you wrote. It disturbs me that every time I say that I don't think mold isn't a major player for me, I am accused of overlooking biotoxin illness. I do not. I am well aware that environmental illness is a major factor for many.
In my opinion, "the moldies" don't go far enough. There seems to be a peculiar lack of interest in diet and pesticides in the group as a whole. The toxin load is probably additive due to inability to properly detox. The most marginally compensated are the most sensitive (and reactive). Mold may be a major player for one person, but a particular chemical in the environment a problem for another. As a group, heavy metal toxicity is an issue. The environmental piece is much bigger than mold. But "ick" is too out there for me.
Jamie
>I was very shaken by the Singh study, the first negative study that had the power to do that to me. It's because I thought, as you mention, that she was on our side. It disappoints me to know that she participated in such a flawed study. I'm X+ and have been taking anti-retrovirals for three months now. I feel better. I'm seeing improvements for the first time since I became ill almost five years ago. I feel like I'm coming up for air. I'm grateful for a doctor willing to take a risk on me when I presented him with the information and asked him to give me a chance. I have had no ill effects, and I have no intention of giving up treatment until I have exhausted all benefit from it. Your trip to Hawaii sounds wonderful and seems but a pipe dream for me right now. I'm keeping my fingers crossed that I'll continue to see progress.
>Thanks for your response, Dr. Deckoff-Jones. I agree, the environment as a whole is a concern. I appreciate the comment!
And back to your topic, I'd like to ask if anyone knows the answer to this:
Can anybody tell me what CAA's involvement was/is with Ila Singh's latest XMRV paper? CAA says they did not fund. However, in the October 2010 "building on your investment" webinar, page 14 of the pdf, they state ""We began a collaboration with Dr. Ila Singh, a leading expert in murine retroviruses, to determine their relationship to CFS". What form did/does that collaboration take?
>Dear Dr. Jamie,
Don't you think it would be good for the debate we are having if more of the people commenting on your blog had the courage to come out of the shadows and either put their name, or at least some kind of an identity to their comments.
With so many contributions by "Anonymous" it looks like we have a bunch of very scared or timid people here …….or perhaps just a few playing a game of hide and seek with each other.
>I am anonymous as well it has to do with family and insurance . I've been on ARV's for a year and I just had my best day in 4 years . I am improving in very interesting ways. For example my blood sugar doesn't crash anymore , my cognitive issues are way down , I can read , write and think clearly again. I can remember names , faces and phone numbers . My doctor said this is the best cognitively I've sounded since becoming suck. She would know she's been my doctor for 20 years. I don't recommend ARV therapy at all unless all other avenues have been pursued. But if you are anything like me it's jumping out of a burning plane wondering if a parachute is going to open . . So what harm is there ? The side effects were minimal and lasted less time than other therapies . I don't know long term about anything I'm taking one step at a time and enjoying each day this new world is open to me . I see colors brighter too. Things are sharper . I found something that works for now and I'm blessed and thankful beyond measure . I hope everyone finds the best doctors and treatments too.
>@Khaly…Hmmm. CAA says they didn't fund Singh, but my doctor says they did help with funding… to the tune of around $100K (money down a rat hole, Doc says). Doc wonders, for that much money, why the CAA's "Scientific Director" didn't demand they REPLICATE Lombardi, et al, or at the very least demand that Singh prove her system detects XMRV in the blood of her own XMRV positive cancer patients before she published her study.