Somebody posted on FaceBook a few days ago: I love my computer, because my friends live in it. For no one has that been more true than for me, despite the trolls. I started to write, because I was so excited about what was happening and thought sharing my experiences would be useful. My selfish motivation was to move it along as quickly as possible, so we could all get on with it. I thought the anecdotal clinical responses might drive it, along with fear of a contaminated blood supply and the lure of money for the drug companies. I actually felt a twinge of regret that by the time I was ready to work, it would be all figured out. Ha!
I wrote because it was all I could do at the time, and it didn’t matter what anyone thought about me. Work was an impossibility, a fantasy. Now I’m working part time and taking care of a very small number of patients. I am caring for them in a very hands on way, like they are all Ali:). I will be max’ed out very quickly. I am not selling a protocol or seeking patients on this blog. That will take care of itself word of mouth, as it did in my last practice. I am writing to share with people who could never get to me. Many readers are on the other side of the world. My approach to treatment is very moderate and non-invasive, having learned from the mistakes of the past. Primum non nocere. Why should that threaten anyone? Unless you disagree with my question authority point of view. Honestly, the idea that what I’ve been saying has ignited such a firestorm is a puzzle. You would think that people would be happy that a doctor is willing to share openly, not to mention hearing that someone is making progress. Instead the whole thing has spun into some weird parallel universe where the critters all have big, sharp teeth. That’s what has me scratching my head. The response is so off kilter to the message.
My interaction with Jason was a personification of the problem. After insulting me on my own blog to the point that I thought he was a troll, he sent me a request to review the science and post his thoughts. I responded as warmly as I knew how. The only thing I asked was that he learn something about the disease. I offered to share with him, so that the time he put into it would be meaningful. He said he would review the literature. Period. End of discussion. If it isn’t in the literature, it doesn’t exist. Below is my second letter to Jason.
Dear Jason,
I deeply appreciate your coming forward as yourself, and not an anonymous poster. I will publish what you write without editing. I will only state that it is opinion, not fact, and that I think you were brave and generous to do it. If I disagree, I’ll blog my thoughts after. The only way I wouldn’t post is if it was clearly written from a place of needing to prove me wrong. I am asking you to come to this project with a “beginner’s mind”.
“In the beginner’s mind there are many possibilities, but in the expert’s mind there are few.”
~ Shunryu Suzuki
In your quest for objectivity, please don’t forget that there are real people with a horrible disease, many trapped in their beds with no medical care and no hope. I am the CFS suicide hotline. The shoulder to cry on. I take calls and email regularly. I am not exaggerating the importance of what you write. Please take that responsibility very seriously, even if it makes you somewhat less “objective”. Think about why the hypothesis might be right, not just why it’s wrong. Don’t decide going into it what the answer is, even though I have attacked some of your heroes, you think unfairly, but I think they have shown an incredible lack of compassion, cruelty to oppressed people.
I don’t think that you can fully consider the hypothesis without understanding the pathophysiology of CFS, autism, Gulf War Illness, Lyme Disease. Also human and animal retroviral disease. The veterinary literature is very telling. What you will find when you start to look into viral etiology of CFS is literature proving it isn’t EBV or HHV-6. There is nothing but the recent furor to connect CFS to retroviruses. Other than Michael Snyderman’s data, published as a poster presentation. So the only choice is to start with a hypothesis and work backwards. Please bear in mind, I am a doctor, not a scientist. I sit in a room with people who want to die because they have lost everything, are suffering unbelievably and are laughed at by doctors and scientists. Imagine having the worst day of flu of your life and having it never go away (not the way I got sick btw). Then maybe a hundred other horrible symptoms, pain, nausea, intractable headache, chronic cramps and diarrhea, sleep deprivation. Then your doctor sends you to a psychiatrist who says you are too focused on your symptoms. Cowboy up. Only you can’t even sit up. Then your kids and husband start getting sick too, and nobody cares.
I have never claimed to be ‘objective’. It was an ah-ha for me. A 15 year mystery, that almost cost me my life (transfusion, emergency surgery, small bowel resection at midnight, TPN), beginning to give up its secrets. A mystery that ended any chance for a normal life for my beloved daughter at 13. I am tearing up as I write this, thinking of what she was like when she was the size of your precious baby. Not that she isn’t wonderful now, but her life is so diminished compared to the one she could have had. I was 41 and a successful doctor, so I had something to fall back on each time I’ve recovered enough to do something, but the kids who get sick in adolescence never get to live at all. The second generation is sicker. The youngest person I’ve heard of with CFS is 4, not autism, CFS, 3rd generation. Grandma is very sick. Mother, a doctor, a little sick. Doctors and nurses are over represented in the patient group. Also vets. You should be able to share in my outrage at the lack of epidemiological studies, since it doesn’t impact your field, once you start to hear what the patients are saying about their families (some on my blog). I am looking forward to your figuring out how little money has been spent on a disease that affects so many and causes so much disability. You wouldn’t believe the untapped talent in my mail.
Judy Mikovits heard the pain of the patients. Too much for her own good. She took all the desperate mail and was terribly affected by it. She visited horribly ill patients in the UK and Norway, who are being abused by their doctors and governments. Patients lying in dark rooms with ear protection and feeding tubes, for years; too weak to roll over, begging to be let out of their bodies. I kid you not. I got involved with the WPI because Judy was answering all this mail, from people who were writing to me also, and she was really bad at it, while it was a reflex for me. Judy Mikovits is a gifted scientist, with human frailties. She was working in an impossibly toxic environment with no help and the entire old boys network coming down on her. She did lots of things wrong from a PR point of view. What she did or didn’t do right scientifically will all come out in the wash. It is the finding the novel pathogen, or more likely pathogens, the theory that matters now and that must be investigated. Even though you prefer deductive reasoning, genius requires induction. There is an enormous opportunity here for you, both as a scientist and as a humanitarian. It is possible to be both.
I have brainstormed with Frank Ruscetti. He thinks it’s real. Sandy Ruscetti thinks it’s real and she understands the murine retrovirology better than almost anyone. I had dinner with Ian Lipkin. He said “it smells viral”. He was clearly very interested. It isn’t one of the known pathogens…
I know you are in the lion’s den and need not to get eaten. But always question authority:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1182327/?tool=pubmed
The ‘souless freak’,
Jamie
PS. I didn’t send any letters.
PPS. Another Suzuki Roshi quote:
If you want to enjoy the movie, you should know that it is the combination of film and light and white screen, and that the most important thing is to have a plain, white screen.
~ Shunryu Suzuki
I sent our correspondence to five trusted friends for reality testing, two of whom are well known advocates, before I answered Jason’s response to my letter. Complete consensus. One of them called him a ‘snot’ and I did pass it on to him, I confess. If the shoe fits. I suggested he start his own blog. I’m sure, in fact, Jason is a very nice young man, with a young family, trying to get by, like all of us. He doesn’t even really know what hit him, removed as he is, working in an ivory tower environment. He was unwilling to take off the blinders and my readers don’t need any more negativity. Plenty of that to go around. Patients, with no medical help, have to decide what to do, in real time, with incomplete information, in a very imperfect world. And I have to treat patients in the here and now.
The attacks are an energy suck. Not just my energy, but readers’ precious energy. Any suggestions about how to deal with it are greatly appreciated. It is very strange to be judged by anonymous people. It’s not just me that they are judging, but the uppity patients who agree with me. If nobody was reading, they wouldn’t bother with me. It is the growing sense of community that is spooking them, not lil ol me. Being forced to defend myself again and again, to prove I’m right, when I’ve never said that I am, serves no one. Being right is the booby prize.
I want to get better. I want my daughter, my patients and my readers to improve. If somebody has better ideas, please share them. The name of the blog is X Rx. I think it is still appropriate. Virologists call an unknown pathogen X. Elaine De Freitas called her virus X. I concede the URL is obsolete. But the point is, it does me no good to be right if it doesn’t result in treatment, at least an approach to the illness. We can start to look at our NK cells, number and function, as well as cytokines. There are many things that can be done for AIDS, in the alternative medicine world, in addition to HAART. Let’s look at those. One of the reasons we are better is the excellent help we’ve had from our FP, Russ Canfield, a smart, young doctor in Santa Fe, who has a profound understanding of the functional medicine piece, which I didn’t find cost effective when I was in practice last time, but which, he is slowly convincing me, has made progress since then. I have a longstanding interest in herbs. Trying to put it all together, like everyone else. The blog is an assist, bilaterally, except for anonymous attacks and gratuitous insults. I will persevere, as the vast majority of the feedback I get is positive, even from people who disagree with me.
>Anon @ 1:17 AM, yes, I certainly have seen the notion of "threats" used that way – I liked your comment on it. I shamelessly used your comment to get up on my soapbox and expand on it a bit ;>D
>@kkrizani
LOL. Maybe we should start every post with, "I was threatened again today…"
>WOW amazing,
dont take ARVs just becasue they work, thy are dangerous/toxic,
but do take this wonder drug which is perfectly safe, is it?
so how and why does this drug work on people with cfs?
what on earth cud be so wrong with us that a cancer drugs causes such improvements?
many many cancers (40% i think) have a viral cause.
I wonder what virus might be implicated in ME,
nope my minds a blank.
>Lets throw some letter out there.
I will start.
H
>Lost my last posting…too sick to write much again.
RT ON "WILDAISY" !!! ME TOO !!
JASON….GO AWAY
ALL….NEGATIVE ATTITUDES…..FIND SOMEWHERE ELSE TO "BITCH"
I ALMOST THREW UP JUST GETTING TO THE BOTTOM OF THIS, WITH …ALL..THE HORRIBLE ENERGY (& SOME WONDERFUL TOO) …BUT "ENOUGH IS ENOUGH"
"US" THAT ARE THIS SICK …CAN NOT !!! HANDLE IT!
JAMIE U'R LIGHT IS SO BRIGHT & FULL OF LOVE,LIKE DR JUDY'S, THAT Y'R GOD-GIVEN SWEET ENERGY, IS TOO BEAUTIFUL & 'IN COMPLETE SERVICE'
TO ALLOW 'THOSE WHO CHOOSE, ! TO TRY TO KNOCK IT DOWN !
I SEND LOVE,BLESSING'S TO ALL HERE !
THIS POST IS SACRED, …..
marie moore
>Thank you, Marie, WD and to everyone for enduring this little mystery play. We need someone to smudge the blog with sage:). Anybody know how to do that in the ether? Humor? A song? All visualize white light at the same moment?
On to treatment…
I send love too,
Jamie
>Any doubts that I might have had that Judy Mikovits is a complete fraud have entirely been put to rest as a result of her association with this blog.
>"If you want to see quality science in action then check out the CANCER specialists in Norway who have great data with CFS and the drug Rituximab (Google "Fluge Mella rituximab"). By the way, to all the quacks out there, this study has NOTHING to do with retroviral infection – you're dishonest to suggest otherwise and you know it – so keep your amateur claws out of it. "
Yes, I understand that the Norway study is with CFS patients. But the point is that Rituxan is also being studied with AIDS patients. You see, if you get problems with B cells, either autoimmune or infectious problems then reducing the B cells may affect the disease symptoms. It isn't a cure, certainly not for RA. The Rituxan has to be given about every six months again and again.
Is it worth trying experimentally for CFS? It's a risky drug. Further, we know that CFS patients have reactivated infections all the time. This type of patient does not need to be taking Rituxan and suppressing the immune system. That is a good way to die. We need to hold our breath and wait to see what further research on the murine leukemia retroviruses may turn up.
If I were Snyderman or Deckoff-Jones I would certainly try the ARVs. However, I did not test positive for XMRV, maybe will turn out to have a different strain. WE MUST HAVE FURTHER RESEARCH.
>You cannot POSSIBLY still think that VIP test for XMRV has any relevance to anything. Can you?
Let's review the findings of Simmons 2011, for the WPI.
For negative controls (non-patients), they said that 8/15 were positive.
For their own chosen "positives," they called 6/10 positive. For Lo et al "positives," they (to their credit) called 5/5 positive.
For "spiked" positive controls (where XMRV actually was there through purposeful contamination), they called only 7/10 positive.
(This last is particularly humiliating for the WPI/Mikovits and their much-promoted "special" test, because all the other labs were able to identify XMRV when it was actually there 100% of the time.)
I very likely could have gotten results this good as a result of flipping a coin. Maybe that's what they did.
If I'd paid $500+ for that XMRV test and heard these results, I'd be ready to sue both Mikovits and the WPI for fraud. (A law professor I know said that this likely would be a winnable case with punitive damages too, except that it's very hard to do a class action when the plaintiffs are spread out across many states.)
So it's very peculiar that you and (apparently) others who paid for the test not only aren't up in arms, but continue to think that the VIP "results" mean something.
Denial is a very strong motivator, it seems.
>Ignore the unimportant and inconsequential remarks. That's the only way to deal with the playground bully. Pay no mind, do not engage.
I am no longer reading anything from someone who doesn't use a name and repeats hostile barbs for purely destructive reasons, without any regard for those of us who are ill.
It's all about ego and nothing about or helpful to people who have CFIDS. In fact, it's making us sicker to have to see this stuff.
Let's ignore this and move on to more constructive discussions.
>@Anon 10:37 PM
ViPDx is the responsibility of Lombardi and the Whittemore's, nothing to do with Mikovits.
The blood working faults are incredible. They did flip a coin and should have produced a scientific study.
1) Controls were not screened by all labs
2) Controls could not have been declared negative as no PBMCs were sent out.
3) 22Rv1 in the CDC lab with a portion of the collection tubes
4) All assays optimised to VP62, cannot detect HGRVs, so no assays in the study were validated.
5) Lo's team used the wrong assay from Lo et al.
6) No trizol used with PBMCs renders the WPIs assays useless.
7) Deadlines set prevented culture times needed for serology and culture.
8) Patients were on medications known to produce false negatives.
And that's how they claim to be protecting the blood supply!
Denial is a very strong motivator, it seems.
>I think anonymous was addressing me, since I commented that I was negative. A. wrote:
"You cannot POSSIBLY still think that VIP test for XMRV has any relevance to anything. Can you?"
Some of us were looked at in great detail, not just by VIP. Some were cultured etc. I cannot say who this applies to. Suffice it to say my "negative" was studied intensively. It was either a true negative or a different strain that Mikovits was not testing for and she stated this at the time she looked at my blood sample.
As to false positives, I do not see reason to assume the positives at VIP were false in the first go round of patient testing. I do think the studies done after that may well have been false positives since the testing was contaminated. I could be wrong. Certainly the cultured positives were positive.
But, frankly, my greatest concern is not that the VIP lab was contaminated and got some false positives, but that there is or are some strains of murine leukemia retroviruses that have infected humans and also that can be spread to human lab workers. This is highly likely based on studies in print as I type this tonight. We have to take this seriously and not throw the gamma retroviruses out with the XMRVs.
We must continue the research. It would be helpful if we respect each other and OBJECTIVELY agree or disagree pointing out EVIDENCE without name calling.
>XMRV/VP62 doesn't exist in nature.
>Exactly: state the science — the facts, the information. Ask questions, and give objective answers.
Aren't Drs. Lo and Alter still investigating MLV? What about Ian Lipkin? Will he do that?
Now, WPI has a statement up as of Oct. 19 in which they say that they are continuing research, that they have a staff to do that, and that any grants belong to the institution and not to an individual.
I wonder what they will research.
>@kathy d.
Who are you talking to suggesting they are not talking about the science all the time?
>How about this,Dr Jamie.. !! we ALL can sing this little song, "This Little Light of Mine/GOSPEL," (http://www.youtube.com/watch?v=eJJ1TwC-upE&feature=related)
Dr Jamie, then just throw in a little sage :)
& " WO-LA-POOF GONE "….:)
a personal short story w/this song. Most of years, with this/these diseases, I have had to go it solo (like a lot-of family's here & the devestion "WE" have suffered for those losses-lots of hurts)
i am a breat cancer survivor too-11yrs ago. I was heading up to the clinic hospital to 'see', if it had spread to the other breast-(almost,Christmas day.)
Heading from the parking garage entering the hospital, out of no where….This little song,just,popped into my head.
from the moment one, i was a 'singing this song'
doing the best I could, 'kinda' of booging along.
If i could of danced, i would have been doing that too. (used to Love to dance !)
One,…montra i live in life..now,is …."NO…ONE ! is going to STEAL… 'MY' JOY"…!
"I CAN ! CONTROL THAT":)
BLESSING'S……..marie
http://www.youtube.com/watch?v=eJJ1TwC-upE&feature=related
""You are the light of the world. A city on a hill cannot be hidden. Neither do people light a lamp and put it under a bowl. Instead they put it on its stand, and it gives light to everyone in the house. In the same way, let your light shine before men, that they may see your good deeds and praise your Father in Heaven."
Matthew 5:14-16
>The study from Norway supports the HGRVs hypothesis for ME/CFS, as MLVs infect B cells.
All papers that have used the VP62 clone to optimise their assays, could not have detect HGRVs. VP62/XMRV has nothing to do with the findings in Lombardi et al.
>from Shelley's hymn to Apollo. (i dunno, it just made sense.)
"The herded wolves, bold only to pursue;
The obscene ravens, clamorous o'er the dead;
The vultures, to the conqueror's banner true,
Who feed where Desolation first has fed,
And whose wings rain contagion: how they fled,
When like Apollo, from his golden bow,
The Pythian of the age one arrow sped
And smiled! The spoilers tempt no second blow;
They fawn on the proud feet that spurn them as they go."
oh Apollo, please send us an Apollo soon! xoxoxo
>and if anyone is interested, there's a "Nature" program in 10 minutes on the radioactive wolves roaming around the dead zone of Chernobyl. what a world we live in.
>XMRV as defined by john Coffin as being the DNA sequence purportedly isolated from patient VP-62 in the Urisman et al study of 2006 does not in fact in nature.It is a composite created from DNA taken from different tissues and different patients
The existence of gammaretroviruses infecting people with ME and causing the cytokine and chemokine patterns associated with activated microglia is a completely different issue
Whoever now refers to the term XMRV as a single entity is now displaying scientific illiteracy.
Tropism is merely a measure of host range and it is not yet known whether these gammaretroviruses are capable of infecting and replicating in any other species apart from humans
>Isn't it peculiar that all the other labs could identify XMRV when it actually was there (in samples spiked with contamination) and WPI could not?
This is especially messed up since WPI/Judy Mikovits kept insisting that the reason that all the previous studies kept coming up 0/0 was because the other labs didn't to a 100% replication of their methods.
Ha!
>XMRV/VP62 is not an integrated virus. It is a clone that was constructed by Silverman in 2006. The optimisation required to detect XMRV/VP62, will not detect human gamma retroviruses.
The WPI's assays were optimised for HGRVs. They did not use VP62 for their PCR assays in Lombardi et al.
The other labs had assays optimised to VP62/XMRV, which is not a natural isolate.
That is why all 00 studies are invalidated.
Ha!
>Viruses that integrate into CpG islands cannot be amplified using standard PCR. It is easy to detect a free floating clone, never once found in nature and constructed in a lab. Assays to detect HGRVs must be optimised to them as those viruses integrate into CpG islands.
>My question is the same as Kathy D's. Will Lipkin look for HGRV's? Is this study underway yet? God knows there has been enough talk of it but what's happening with it now? Someone out there must know something about this study. Any news on it pls, I am desperate!!
>If Lipkin does not have every lab using diagnostically validated assays optimised to HGRVs, no he will not be.
>"Isn't it peculiar that all the other labs could identify XMRV when it actually was there (in samples spiked with contamination) and WPI could not?"
what were the samples spiked with?
>And I ask again does anyone know if Drs. Lo and Alter are continuing to study MLV and CFIDS?
I read a point at the CAA that said that Ian Lipkin will be studying viral connections in the CF Initiative that is being funded by Hutchins Family Fund. But it did not specify which viruses he's studying, just said 20-30 viruses.
And I do wonder what WPI will be studying, as they say that are continuing to do research on possible causes.
>If they are not using diagnostically validated assays they are not.
According to Professor Racaniello Lipkin is deep sequencing. According to the WSJ he is not looking for XMRV.
Lombardi et al found HGRVs, so is Lipkin not going to find them? He cannot avoid them if they are there.
The WPI don't have a research scientist at this time.
>>what were the samples spiked with?
From the paper:
"Finally, a separate facility in the central laboratory prepared and characterized stocks of the XMRV- infected human cell line 22Rv1 (15, 18) and supernatant, which were used to spike samples to create a set of low-level positive controls (17)….. The WPI assays appeared less sensitive than those used by the other laboratories, based on the fact that only 3 of 5 plasma and 4 of 5 PBMC-spiked positive control replicates were scored as positive by WPI (table 1) (table S7). "
Failure to Confirm XMRV/MLVs in the Blood of Patients with Chronic Fatigue Syndrome: A Multi-Laboratory Study
Graham Simmons,1 Simone A. Glynn,2 Anthony L. Komaroff,3 Judy A. Mikovits,4 Leslie H. Tobler,1 John Hackett Jr.,5 Ning Tang,5 William M. Switzer,6 Walid Heneine,6 Indira K. Hewlett,7 Jiangqin Zhao,7 Shyh- Ching Lo,8 Harvey J. Alter,9 Jeffrey M. Linnen,10 Kui Gao,10 John M. Coffin,11 Mary F. Kearney,12 Francis W. Ruscetti,12 Max A. Pfost,4 James Bethel,13 Steven Kleinman,14 Jerry A. Holmberg,15 Michael P. Busch,1* for the Blood XMRV Scientific Research Working Group (SRWG)†
1Blood Systems Research Institute and University of California, San Francisco, San Francisco, CA 94118, USA. 2Transfusion Medicine and Cellular Therapeutics Branch, National Heart, Lung, and Blood Institute, NIH, Bethesda, MD 20892, USA. 3Harvard Medical School, and Brigham and Women’s Hospital, Boston MA 02115, USA. 4Whittemore Peterson Institute and University of Nevada, Reno, NV 89557, USA. 5Abbott Laboratories, Abbott Park, IL 60064, USA. 6Division of HIV/AIDS Prevention, CDC, Atlanta GA 30333, USA. 7Office of Blood Research, FDA, Rockville, MD 20852, USA. 8Office of Cellular, Tissue and Gene Therapies Review, FDA, Bethesda, MD 20892, USA. 9Department of Transfusion Medicine, NIH, Bethesda, MD 20892, USA. 10Gen-Probe, San Diego, CA 92121, USA. 11Department of Molecular Biology and Microbiology, Tufts University, Boston, MA 02111, USA. 12National Cancer Institute–Frederick, Frederick, MD 21702, USA. 13Westat, Rockville, MD 20850, USA. 14University of British Columbia, Victoria, BC, Canada. 15U.S. Department of Health and Human Services, Rockville, MD 20852, USA.
*To whom correspondence should be addressed. E-mail: mbusch@bloodsystems.org †A description of the SRWG is available as supporting material in Science Online.
>The WPIs assays are optimised to HGRVs. Granted they were defeated by the failure of the BWG to use trizol, but that is what they would be optimised to. Not VP62/XMRV. Then again, we know that it was ViPDx that actual did the BWG and not Mikovits.
Do you understand why an assay needs to proven capable of amplifying viruses that integrate into CpG islands? A free floating clone at high titre is easy.
You do realise that Paprotka et al. now has no choice but to be retracted for leaving out an assay they used in the study?
>"Anonymous said…
@Anon 12:22 PM
You sound like you are saying. OMG! OMG! people are thinking for themselves. LOL. Scientists also have ME. Virologists also have ME. VP62/XMRV has never been found in nature.
Human gamma retroviruses were discovered by Lombardi et al. and Lo et al."
Well, according to some people the results of Lo et al are invalid because they simple froze their samples until ready to use (just like the BWG). Trizol was only used after the samples were thawed to isolate RNA. If the BWG results are useless related to how they stored the samples, then I guess the Lo study is too.
>RNA will degrade without trizol. Lo et al. used trizol.
"according to some people" this will be the reason for your ignorance.
>The failure of the blood working group study is not only rests on trizol, but failure to to have PBMCs of negatives prescreened, controls sent to only certain labs, 22Rv1 in the CDC lab with a portion of the collection tubes.
The entire study is gone
>"RNA will degrade without trizol. Lo et al. used trizol.
"according to some people" this will be the reason for your ignorance."
Trizol isolates RNA from a sample, it's not a preservative. Lo et al. used trizol to isolate RNA from samples after they unfroze them (their method of preservation). From the paper itself "To prepare RNA from the frozen
plasma sample, 0.5 mL of the frozen plasma was thawed and subjected to ultracentrifugation at 195,500 × g on an Optima Max-XP ultracentrifuge (Beckman Coulter) for 4 h at 4 °C. The
pellet was dissolved in 250 μL of PBS, and RNA was extracted using TRIzol reagent (Invitrogen) according to the manufacturer’s
protocol."
I THINK THIS BEARS REPEATING.
"October 19, 2011 12:05 PM
Anonymous said…
If more people were willing to listen to scientists then research into this illness would advance much more quickly. Frankly, I've had enough of quacks and amateurs like "Gerwyn" ( is NOT and has NEVER been a virologist, DOES NOT hold any virology qualifications ). It is blatantly dishonest and frankly reprehensible that amateurs are misleading patients about what's going on. Dr Deckoff-Jones, as a long-time MD, you should appreciate the scientific method better than most. It is dishonest to pretend that current scientific evidence does not strongly suggest that "XMRV" is a total dead end. If people accepted this then CFS research can move on to areas where some breakthroughs can finally be made, whether that be virology, endocrinology, neurology or whatever. The dishonesty from amateurs must stop. Listen to the professionals or the quacks will take over completely."
>TRIZOL maintains the integrity of the RNA.
It bears repeating that if you say "according to some people" this will be the reason for your ignorance.
>@Anon 5:17 AM
Are you another student scientist who has miraculously appeared to lie to everyone?
Do you think it is acceptable for Coffin and Pathak to have left out the use of a reverse transcriptase PCR assay in Paprotka et al?
>The 22Rv1 was in the same lab as some collection tubes.
How is that not a problem for the blood working group?
>Lo's team in the blood working group used the assay that didn't find anything in Lo et al.
>Not another person thinking they are getting correct information.
"Background: Although TRIzol is widely used for preservation and isolation of RNA,"
"in TRIzol-preserved samples"
"TRIzol preserves RNA quality well"
http://m.cebp.aacrjournals.org/content/19/10/2445.full
>From the blog post above:
>I had dinner with Ian Lipkin. He said "it smells viral". He was clearly very interested. It isn't one of the known pathogens…
Here is what Lipkin actually said. He more seems to think that it's an ordinary virus, in the same category as (say) HHV6, and that it occurs only in a subset of people with the illness. So it's misleading to suggest that he thinks a virus is causing the illness.
Lipkin: "The thing is, to the guy who's holding a hammer, everything looks like a nail. So, you know, I'm a virologist. So it looks to me like a virus. But I also like, I mean, I also work with bacteria and fungi too. But it smells more like a viral infection. But it would not at all surprise me if it were a common viral infection to which people had an uncommon response. There are all kinds of models, but what we prefer to do is to see whether or not there's a consistent finding, you know, in some subset of people. "
>So I guess Lo et al. don't know what you do about trizol being a preservative because they only used it to isolate the RNA in some of their samples. They froze all their samples to preserve them, just as they did in the BWG study. They added trizol to isolate RNA, not to preserve the sample — look at the methods section in Lo. To isolate DNA in other samples, they used a different reagent –look at the methods section in Lo. I think you are confused about preserving a sample and preserving RNA. So, I guess since Lo et al. didn't "preserve" their samples with trizol from the get go, their results are worthless according to Gerwyn and V99.
I guess people need to write to Lo et al., and all those scientists who freeze their samples and add trizol later to isolate RNA for testing because obviously they have no clue what they are doing. Maybe Gerwyn and V99 should set up a special website so all the scientists can post questions on how to prepare their samples properly because we all know Gerwyn and V99 have prepared hundreds of samples for investigation.
>@Anon 8:12 AM
There is no recording of the dinner that you are talking about, so unless you were there how do you know?
>@Anon 8:24 AM
Lo's team used the assay that did not work in Lo et al. in the blood working group.
"So I guess Lo et al. don't know what you do about trizol being a preservative because they only used it to isolate the RNA in some of their samples."
There is no information in the blood working group paper on how the Lo patients samples were processed.
>"Background: Although TRIzol is widely used for preservation and isolation of RNA,"
"in TRIzol-preserved samples"
"TRIzol preserves RNA quality well"
http://m.cebp.aacrjournals.org/content/19/10/2445.full
>By the way, Lo et al. and BWG used the same methods. They froze their samples, then used reagents to isolate after thawing the samples. So in this regard, either both studies are good or neither are according to the genuius of V99 and Gerwyn.
Read the methods section of both studies — samples frozen, then reagents added when samples were ready to be tested (trizol in the case of Lo). So the point is, they did the same thing. Gerwyn and V99, how do you collect, preserve, and test your hundreds of samples. Are you going to publish a paper of how your methods are better than every other retrovirologist on the whole planet. Of course, when you do this, you will have to stop hiding behind your many usernames. Perhaps, you can at least post where you are doing your research and your educational background.
As far as the Lo samples in the BWG study, learn how to read. Read the study itself and then the supplemental material. You will find your answer.
>There is no mention of the processing methods used for the Lo patients in the blood working groups paper.
Lo's team used the assay that didn't work in Lo et al.
The WPI's assay was defeated as no trizol was added to the PBMCs.
No patient could have been declared negative as no PBMCs were sent out.
Controls were not screened by all labs.
22Rv1 was in the same lab as some collection tubes.
Perhaps you should read the paper.
>No patient could have been declared negative as no PBMCs were sent out.
Should be no control could have been declared negative.
>First of all, people on this list-serve who are ill, have a right to make statements and ask questions. No one has to be a scientist or researcher to make a comment.
In fact, people with CFIDS should raise questions and comments. They don't have to have a Ph.D. or even a Masters in any science.
They're simply ill. This is not a virologists' website.
So the snarkiness about people posting on the list and someone evaluating them in a not respectful way should stop.
This list is for people with CFIDS to speak.
One can reply to comments in an objective way WITHOUT criticizing the commenter or even mentioning his/her name.
Objective science is wanted! And NOT snide remarks. Let's be helpful.
I'm wondering about all this discussion now about the Norway study using Rituximab. Lots of pros and cautions at The Chronic Fatigue Syndrome Advocate website.
People on it — some — have felt better after several months, for awhile, then relapse once the drug affect is gone.
>Nice reference post on Phoenix Rising from livingwithcfids:
http://forums.phoenixrising.me/showthread.php?14310-Success!-from-GCMAF-and-New-Videos-from-Doctor-Bell-Enlander-and-Peterson!
The post says:
"Success! from GCMAF
These two patients of Doctor Enlander have had "significant improvement in such a short period of time compared to other ME/CFS/CFIDS treatments"
Patient 1 http://www.youtube.com/watch?v=ueqHb…el_video_title
Patient 2 http://www.youtube.com/watch?v=mAUHb…feature=relmfu
Also, Doctor Bell talks about the new discovery (the cancer drug)
http://www.youtube.com/watch?feature…&v=petcvu53S0w
Doctor Peterson on new foundation, pilot studies, investigating cerebro-spinal fluid (CSF) in M.E/CFIDS patients
http://www.youtube.com/watch?v=_H3mDhf-kso
I've really seen so much CHANGE! these past few days. New research, new drugs, international attention, action to take down CDC "CFS" out-dated information, its all so exciting. I don't want to get any ones hopes up, but the tides are surely in our favor now."
I do think it is all very positive, and impressive, news. Even if one doesn't want to take a drug that depletes B-cells, the insights gained from the astonishing improvement point to the nature of the illness and other ways to shift the immune response. GcMAF when it works seems also quite astonishing.
Jill Neimark
>"WE ARE ALWAYS OPEN TO "PROFESSIONAL'S" WHO WANT TO LEARN ABOUT US AND OUR DISEASE, AND SHARE THEIR KNOWLEDGE, BUT WE ARE NOT OPEN TO THE ARROGANCE OF PROFESSIONAL'S WHO HAVE NO CLUE OF M.E."
You mean like Judy Mikovits, who admitted in an interview with Cheney that she didn't have much experience regarding CFS/ME?
She had 20 years experience in the retrovirology/cancer field, but NONE when it came to CFS/ME.