From Shakespeare’s King Henry V, Act III, Scene I
King Henry V:
Once more unto the breach, dear friends, once more;
Or close the wall up with our English dead.
In peace there’s nothing so becomes a man
As modest stillness and humility:
But when the blast of war blows in our ears,
Then imitate the action of the tiger;
Responding to the flurry of concern for my feelings and irritation from readers about negative comments left by angry Anonymous people, personally, I welcome the discussion, even if expressed without courtesy. There is much to be learned by considering the things the opposition is thinking. Their need for anonymity is amusing and speaks for itself. Don’t let them get you down. Keep your friends close and your enemies closer. It’s all grist for the mill.
As far as I know, the WPI, which is a non-profit, has no conflict of interest. The mission is clear and the people dedicated to the cause. The individuals at the WPI have waived their IP (intellectual property) rights in favor of the institute. Should VIP Dx ever make a profit, it all goes to the institute also. I challenge the other characters in this story to say the same.
As for everyone using their inside voices until the science runs it’s proper course, that’s just naive. That’s like saying that our newspaper reporters are only reporting the truth. People are people. They ask the questions they want answered, and they frame those questions in such a way that the answers will spin it the way they like. That’s why blinding is necessary for the scientific method.
I received an email this morning from Michael Snyderman that I am copying here with his permission:
There is a conflict interest here. A major player is a very wealthy woman by the name of Kristin Loomis who with Annette Whittemore founded the HHV-6 Foundation. Loomis is a great believer that Herpes 6 causes CFS and a lot of other disease. Both women had children with CFS.
Whittemore later set up the WPI with Daniel Peterson who gave the WPI its original CFS samples. Initially the WPI was going to further the cause of Herpes 6. They had a scientist, Konnie Knox and Peterson who were from the HHV-6 Foundation and continued to get money from the HHV-6 Foundation. Knox was fired from the WPI. About this time Lombardi et al. found XMRV (arguably a poor name). Peterson was disturbed because he was a believer in Herpes 6. He left soon after the Lombardi et al. report came out. The position of the HHV-6 Foundation is that Herpes 6 is the cause of CFS and not XMRV and indeed that XMRV does not exist. Peterson then gave Knox the samples from his patients that she reported as negative in the new Science article. She did not declare any conflict of interest over her funds from the HHV-6 Foundation or the fact that she had been fired from the WPI.
There is more. The other article in Science is by John Coffin from Tufts. He first reported that XMRV was a contaminant in 2010. His colleague at Tufts is Brigitte Huber and she was a coauthor on this paper.
On the Tufts website Huber is listed as getting a grant from the HHV-6 Foundation:
Huber, Brigitte HHV-6, EBV and Endogenous Retrovirus in Patients with CFS HHV-
6 Foundation 11/1/09 – 4/30/10This grant was received right after the Lombardi et al. Science report in 2009. Coffin also did not declare any conflict of interest in his Science article although he had collaborated closely with Huber and was a colleague with her at Tufts.
The bottom line is that drug companies will not develop drugs that will help us if they believe that XMRV and related MLRVs do not exist. Lives could be saved with just one type of drug, a protease inhibitor – the one for HIV doesn’t work for XMRV and is a key category of drug for treatment of MLRV-related disorders as proteins such as env are not countered by raltegravir and the RT inhibitors.
Michael Snyderman, MD
Also from my morning mail:
My dr. and I have mostly contact by email because I am bedbound and cannot get to the office as much as I should. This morning I received an email from him … he made the remark that it is very interesting to him that WPI was asked to retreat their paper. Than he proceeded to tell me that he ran some test in his office and that WPI was mistaken to tell me I am XMRV positive because his test came out negative from the other…
How can that be? I feel like the ground has been pulled from under me. The hope I had to finding a solution for my 30 years of suffering is gone! How is it possible that a regular physician who specializes in ME/CFS and Fibromyalgia can do a test like this? I’m gobsmacked and feel myself tunneling in a deep depression. Everything I believed in he took away from me with just one sentence, I just can not stop crying and am so upset.
WPI tested me positive and I have been holding on to that, because I didn’t have much hope elsewhere. I don’t know what to do now. There isn’t any hope left for me.
One of the many sad things happening is that the only testing available may not yet be sensitive enough. Or it may be sensitive enough, but some of us have different viruses that cause clinically indistinguishable disease from the XMRV positive patients. The current VIP Dx serology is aimed at xenotropic and polytropic MLV’s and is not positive in everyone one would expect if the test picks up every infected patient or if XMRV was the only cause of CFS. VIP Dx has a test. It comes out positive or negative. But like many tests, it’s not that black and white. Like all lab tests, it must be interpreted by a doctor within the context of a complete clinical picture, and an understanding of the state of the testing with respect to a particular disease. At this point in time, it’s that test or nothing. Nothing is a valid choice. It is a personal matter. But why the invective? Nobody has to use VIP Dx that doesn’t want to.
As I’ve said before. I could be wrong about anything. Like everyone, I interpret what comes my way from my own perspective. I am not a retrovirologist or even a scientist. I’m a doctor who is fluent with the literature. I also have the disease and my daughter has the disease. Why does my sharing my opinions and experiences make some people so angry, when the vast majority seem to benefit from hearing my thoughts? I challenge any of the people I’ve criticized to come forward as themselves and tell us what happened from your perspective. My mind can change. I’d love to think that everyone involved has integrity and is motivated by the right things, but human beings being what they are, that isn’t likely. As I keep saying, I am wedded to nothing but the truth. And time is of the essence.
This abstract by Prosperi et al may be of importance and I look forward to the paper. It seems confirmation in concept of what I suspect, that 22Rv1 isn’t the one in a trillion recombination event described in Paprotka et al. Interestingly the et al includes William Switzer who published a 0/0 study with Satterfield, as discussed in a previous blog here.
Murine leukemia viruses (MuLV) and Xenotropic MuLV-related viruses exhibit inter-tropic complex recombination patterns. Prosperi/Salemi
Given the evidence of inter-tropic recombination in MuLV, detection and classification of recombination in XMRV using different MuLV tropism prototypes should be interpreted with caution. Despite using a small dataset, a strong phylogenetic signal in the alignments and highly resolved phylogenies inferred both by full-length and sliding-window approaches, different recombination programs reported conflicting results. These results suggest that identification of parental strains of the potential recombinants is difficult and that recombination in the highly genetically related MuLV have been occurring for some time.
The hysteria in the media about the thousands of patients taking AIDS drugs is a joke. If that had happened, we’d have learned a lot, but they shut it down pretty effectively. I still don’t understand the inordinate fear of these particular drugs. All drugs have side effects. Every prescription has a potential cost/benefit ratio that has to be considered by the doctor and the patient at a particular moment. All options should be considered for a disease with no cure that produces such tremendous suffering. This was a prohibition from the beginning, such that taking antiretrovirals feels almost like a form of civil disobedience. As I said at the beginning, what if it works? Why does the scientific community not want to know, irrespective of the detection problems and their horror at skipping beyond their deductive reasoning process, clutched to their breasts like a religious totem? I know of about 50 patients taking arv’s, one to three drugs, for varying lengths of time. All have been sick for a long time. About a third feel they are improved. The rate of change is slow. I don’t know of anyone who has been seriously harmed, other than self-limited adverse reactions in the very early part of treatment. Some people who haven’t done well have gone off. As far as I know, everyone is getting proper monitoring. The interference in the physician patient relationship, happening on a grand scale with respect to restricting this particular treatment, is a travesty.
I have gone from sofa bound to very high functioning in 15 months, while taking antiretrovirals. It was not a good experiment however, nor have I ever claimed otherwise. I am more of an atypical MS picture than classic ME/CFS (like Ali), and I was already on an upswing since quitting lots of Lyme and symptom based treatment six months prior, but still very sick and essentially non-functional. I have also started other medication since, Deplin and Actos. I feel safe in saying that arv’s haven’t hurt me, including a year of AZT. In no way am I suggesting that anyone should do what I did, but everyone should have the right to consider it. The scariest potential risk is renal failure from tenofovir, a very rare event in the HIV world, seen primarily in people with preexisting renal problems. There are some long term consequences of AZT that need consideration. Proper monitoring is necessary.
I’ve returned to practice on the Big Island in Hawaii, because that’s where my active license is, and because I love it there. I trained in Honolulu, after medical school in the Bronx, and had my first job there. I’ve been licensed since 1980, always hoping to return. My family has recently grown to include my eldest daughter (who is adopted and very healthy) and my two small grandchildren. My son has a year of high school to go in Santa Fe. Moving everybody right now is out of the question. And I’m still traveling to Reno also. My husband and I are adapting to the fact that we will be spending a lot of time apart, after 23 years of marriage without separation. I am profoundly grateful to be able to contribute again. When I was practicing in Great Barrington, I was at 90% and it was all about the 10%. Now 90% feels like 110%. When pain goes away, it’s better than if you’d never experienced pain in your life. So round 3 for me. The comeback kid. Who better to treat it? I know the enemy intimately.
I wish it were Ali and not me that was better enough to reenter. I have tremendous survivor’s guilt writing this. My impression is that the second generation is sicker. Simple retroviruses can endogenize or maybe it’s just worst to get it before your immune system is developed. I have heard of very small children who sound like they have full-blown CFS (Beethoven’s 9th symphony?), 4 being the youngest. Not autistic. ME/CFS. 3rd generation.
>Thank you, Dr. Jamie. You are both an inspiration and a voice of reason here.
I appreciate Dr. Snyderman's description about what really happened with Konstance Knox, Dan Peterson and WPI. It is better for everyone to know the truth.
I also agree with you about antiretrovirals. The US government is giving these drugs to pregnant women and as prophylactic treatment to women in Africa. Why are they so good for people who might have HIV and so bad to those of us whose lives are already forfeit to M.E.? It is obvious that the US government is trying to avoid finding the cause of M.E. If ARV treatment puts M.E. into remission, would that not implicate a retrovirus as causative for M.E.? I think it would, and I believe the US government is trying to avoid such a connection. And this avoidance, or at least delay, is costing lives–not numbers on paper but real lives of real people. I have been sick for many years now and I have watched friends die of M.E. To say I am displeased with the action of the US government, especially the CDC and the NIH, would be a huge understatement.
We need clinical trials of antiretrovirals for M.E. NOW!
Patricia Carter
XMRV+, 24 years M.E.
>Of course the clinical trials are being blocked…wouldn't that be the final piece to fulfill Koch's Postulate given Silverman's Macaque studies and the work of Ruscetti in isolating the beastie from patient sera? Not to lessen the importance of Dr. Mikovits' work, of course! It is however harder to hit multiple targets ;).
Bravo to those acting in pharmacological civil disobedience. If clinical trials aren't forthcoming would that MORE are able to participate and hopefully be very loud. In Public. Repeatedly.
>Your final paragraph got me in the heart. Even with minimal treatment, I have that survivor's guilt. I would rather be the bedridden one and see my daughter able to go out into the world.
For all outside experience to be cut off in a child's teens, possibly never to return, is a tragedy. As parents, to be able to do nothing to return our children's lives to them is unbearable.
But the shame, the guilt doesn't lie with us. The guilt lies with those whose irresponsible journalism has a chilling effect on research, and with agency directors who have misspent funds and abused power, diverting resources and even respect from millions of patients in terrible need.
Thanks again to you, the Whittemores and WPI for all your work.
~ Kassy
>When the pain goes away….. we live in hope because of many wonderful people. Thank you.
>Hi Jamie,
I hope you'll devote a column sometime soon about why you decided to start the methylfolate (deplin or other brands), and how you think that has helped you. Reading on several forums suggests that perhaps a lot of folks can be helped with these basic nutrients that they may have not been able to convert/utilize. I'm glad to hear that the methylation issues are being considered, and I appreciate your mentioning them. Would love to hear more details however…
And I remain anonymous primarily because of the threats and nasty emails one gets if one doesn't agree that XMRV is THE cause, THE only hope.
Yes, it happens, and many who post here know exactly what I mean.
>Thank you is all I can say! Thank God WPI is on the case!
>Jamie- I am very grateful for your posts. Researchers are becoming slightly more open and it looks like soon we will know if it is XMRV, HHV6 or various combinations of infectious agents. I am now in my 6th month of valtrex with great but slow improvement. This is the best I have been in many years. The pain is not gone but is decreasing. I now have enough energy to do a few things, even in the morning. It feels like I may get my life back. I want the same thing for the next two generations of my family who are suffering. I do now know when they may find a doctor willing to treat the cause rather than the symptoms. It is a helpless feeling when I think of how impacted their lives are. M Bloomer
>Dr Charles Lapp used the symphony analogy to point out that the patient description was like "I can recognize that tune in four notes"
"Da, da, da, da".
Beethovens FIFTH. It can't be anything else!
Not the King Stephen Overture, not the Pastoral, and CERTAINLY not the Ninth: "Ode to Joy"
Dr Peterson saw a mysterious illness that appeared to be a virus. He sent samples to the Gallo lab, which found a previously unknown herpesvirus, which was first called "Human B cell Lymphotropic Virus", then renamed "HHV6", and then again, "HHV6A" after the far more prevalent Roseola "B" variant was later discovered.
For all I know, this entire debate between Dr Peterson and the WPI is that they are looking at ALL the symphonies… and Dr Peterson still principally thinks of "CFS" as Beethovens Fifth!
Has anybody ASKED him?
>Yes. Da, da, da, da. The 5th. Thank you, Erik. Dr. Snyderman is the musically literate one. The song running through my head lately is Gimme Shelter;).
Jamie
>I know lots of people who have been harmed from taking antivirals such as Valcyte or even (in my own case) Famvir. The IRIS response seems to be the issue.
Some of these people have never gotten back to where they were prior to starting these drugs. I myself did not get to that point until something like a year after moving out of my moldy house, and I feel fairly sure that I would not have needed to be nearly as extreme in my subsequent avoidance activities if I hadn't screwed up my system as a result of taking that drug. (Note that I only was using 250-500 mg of Famvir — a small dose of a mild antiviral.)
Based on what I know and have heard about antiretrovirals, I find it hard to believe that severely ill patients will have an easier time on them than they do the anti herpes virals.
It's very easy for doctors who haven't treated severely ill ME/CFS patients to overestimate what they can tolerate. People who are only moderately ill (such as those who are couchbound) are a whole different ballgame than the people who are extremely ill with this disease.
There are all kinds of things that (according to the reports of both patients and of doctors experienced in treating the disease) may be of help for people who are moderately ill, but that can be disastrous for people who are very ill. These things can include Metafolin (even in tiny amounts), all kinds of pathogen killers, IV glutathione, Actos, and oxygen.
There's a certain irony in this illness, in that the people who seem like they should qualify for "compassionate care" tend to be unable to tolerate almost any interventions that would seem to have the potential of helping them.
(Ampligen, as an immunomodulator, seems to be an exception to this. Obviously it has lots of drawbacks and is no cure, but at least I've not heard stories of people having gotten permanently worse as a result of using it. )
I personally am still considering using antiretrovirals myself, and I've benefited greatly over the last couple of years from a wide variety of other treatments (including HBOT, Metafolin and antivirals). I certainly don't think any treatment options should be off the table.
It's my belief that people who are in bad environments (indoor or outdoor biotoxins) can tolerate far fewer interventions than those who are in good environments. It would be nice to see studies to see if this is true.
Regardless, taking special care with this population seems to be important. This disease is bad enough without doing things to make it even worse.
Best,
Lisa Petrison
lisapetrison at yahoo
>I agree, Lisa. What helps one may hurt another, and the patients are very sensitive. It makes it very difficult to treat. As I've said, I hear from many patients who have gone without any treatment for many years and done fairly well. Which doesn't change that we have the right to choose treatment.
Jamie
>You state you were at 90% in Great Barrington. What changed except going on a heavy antibiotic and anti babesia regimen towards the end of your time there and staying on it for a long time? If you do have a retrovirus you were doing very well containing, did it somehow get activated as a result of the heavy oral and IV treatments? If so, why? Or did the treatment itself, which is not necesarily benign and can completely disrupt the microbiome and thus the immune system, cause damage?
Did hypoxia, high altitude, also cause problems? Seems less likely but you are feeling very good with the mild chamber treatments.
There is good reason to be concerned about prescribing heavy duty drugs in an extremely sensitive, bedbound population. It's not the same as prescribing them to healthy folks with HIV…one might make the same argument for antibiotics, in cases of suspected lyme disease or even positive serology with lyme disease…and they can do a lot of damage, though sometimes are necessary. A short dose of cipro can, in vulnerable individuals, disrupt parts of the microbiome that do not recover even six months later….
>Amen to Jamie's post. I would like to see and open debate of the issues involving Jamie, Judy, Peterson, Singh, Levy, Knox, etc. Most everything is known via hearsay and private conversations. This is terribly unfair to the patient community. If everyone has a valid argument let the debate happen openly. Maybe everyone involved with learn something new.
Also, I don't know if this is relative to the HHV6 v. XMRV discussion but I'll share it. I was in the Stanford Valcyte study. I did two six month stints on Valcyte, separted by about five months of no treatment. My HHV6 titres dropped dramatically; still above normal but much better and they stayed that way for at least a year. My EBV titres were sky-high pre, during and post Valcyte. I experienced no obvious symptom improvement. I would think if HHV6 was the primary culprit in my disease, I'd have seen symptom improvement.
Just a thought. I'm sure there are many ways to analyze that result, including symptom improvement that is too small to notice or make a difference in quality of life. I did experience pretty bad symptom flare for most of the second stint on Valcyte. So I quit after six months; my level of functioning returned to the pre drug level of crappiness.
michel
>I just want to add that anyone attacking anyone else's treatment choices anonymously should be ashamed of themselves.
michael
>Do you need an assistant in Hawaii :-) ???
>Snyderman's letter only begs more questions: why was Knox fired, as oppose to leaving voluntarily, and why did Peterson leave, after attending the CFSAC and helping present XMRV to the world? WPI was supposed to study the big picture. The insinuation here is that someone decided XMRV was the picture, and all other bugs, their proponents and funding, could take a hike. If so, it was quite a gamble and despite disagreements, things should have gone down differently.
I could care less who the rich women were, who was getting money from which of Annette's agencies, and who's mad at who. At this point it's getting a little like the Stanley Cup race, where a guy bit someone and should have been suspended; instead he scored the winning goal in the next game. Do you keep revisiting it? No – 'got to score goals of your own and beat the other guys on the ice. The data and patient results are where the rubber meets the road. The thing with this soap opera is that it's going to make future collaboration that much more difficult.
>A million thanks to Michael Snyderman for writing you that message!
I am one of the XMRV negative ones – perhaps I have the P variant. I'm also fortunate enough to be a Cheney patient (wish I was fortunate enough to not need to be). Cheney tells me that his sickest patients, like me (I'm a KPS 40, bedridden since 2007) are that 10% that he has coming back negative. He has started testing for nagalase, though, and is seeing results at or above that in HIV. Normal is zero to one. He's seen from barely above one up to in the sixes. I just came back at 2.9.
He also will not prescribe antiretrovirals. He told me at my appointment in April that he has concerns about their long-term safety in ME/CFS patients, we being sicker than those with HIV. His money, for the time being, is on GcMAF – but I take heart that he is not doctrinaire and that if the evidence changes, his protocol changes as well. My GcMAF order just went in this week. I have my fingers seriously crossed.
-Jocelyn
>My hopes were raised so high by this discovery and i've been through a rollercoaster of emotions since the original paper was published. Now i feel the momentum has moved away from the WPI and it's just another dead end. Except this time i was completely emotionally invested in it and had told so many people. I feel foolish now.
It is not easy to know who to believe anymore, particularly difficult if you are a brain-fogged layperson. It is harder still when there appears to be gossip, accusations and misinformation to contend with. I can't verify rumour so tend towards confirmation bias. (a common response i'd guess)
I am sorry for any intemperate posts made recently, I've tried to be as rational as possible but my emotions have got the better of me. I apologise for this. I believe that Dr Deckoff-Jones has a very difficult time both as a sufferer and a parent of another. Also, I think she has the best of intentions and (alongside others at the WPI) is motivated to help people (especially people with ME/CFS). I just think that XMRV is not the solution to our problem. (however, i'm not promoting HHV-6A as the cause either)
I have also stayed anonymous for the same reasons stated by anonymous @ 4.19 pm. But have added my first name to distinguish posts as i'm not the only critical poster. The online ME/CFS community in my opinion has never been so divided or angry. (there are so many denunciations i feel like i'm in the old Soviet Union) Maybe it's only natural after all we've suffered that we're fighting back and unfortunately sometimes the wrong people are the target. Until such time as a cure/treatment is available I hope we can be a broad enough church to tolerate the opinions of others.
>XMRV became of interest to people because WPI published a paper suggesting that it was significantly more present in the blood of a certain group of ME/CFS sufferers than in the general population.
Their ability to test for the virus thus is at the heart of the discussion.
If their test is not able to significantly distinguish ME/CFS sufferers from the general population, that puts the relevance of the virus (regardless of whether it exists apart from contamination) to this illness in question.
Certainly, there is some disagreement in terms of who has or who does not have ME/CFS. However, the CCC seem pretty agreed upon.
It's unclear at this point whether WPI would be able to accurately distinguish a group of correctly diagnosed CCC patients vs. general population members, using their test. Their showing that they are able to do so would go a long way towards convincing people that the retrovirus is not only "real" but of relevance for this illness, regardless of whether any other group replicated their results using their assays.
If, by chance, they can't do that, then they will need to provide an explanation about why they could do it in the selection of ME/CFS patients used in the initial paper. Did something make those particular patients different than general ME/CFS patients, for instance?
None of this is controversial or even particularly critical. It's just science.
The call for people expressing such concerns on this blog to reveal their identities misses the point. Science is not about motivation or belief. It is about reproducibility, logic and objectivity. That's why peer reviewers are anonymous — so that they can express their views freely.
I wish the WPI well in providing a clear case that their previous work was correct.
>I think the bottom line on risk/return in drug treatments is length of illness. In the early stages of an illness caution is probably best due to the risk of causing more harm than good, i.e., making someone much sicker, doing irreparable damage, or setting the disease on a different, and possibly more damaging course. If you've been sick for many years though, all those risks are cancelled out because the disease process itself has done all that.
In the course of my own almost 30 year illness, the best doctors, the most compassionate, the most caring and the most kind have been the ones who recognised both this human right and the seriousness of the illness they were dealing with. I don't think I've ever met a doctor who truly understood the horror of ME who would not have given anything that might help a trial at least. It is up to the patient in consultation with their doctor what treatments they will or won't pursue. That is a basic human right. Scientists may report the risks of treatment, they do not get to decide who takes what – it's none of their business. It's really that simple.
Watching the whole ARV use debate in ME actually reminds me of a family member's words when another debate was raging in the news media over whether a young man who'd become a tetraplegic and was being kept alive artificially but wanted to be left to die should be allowed to do so. In that case doctors said they couldn't stop treatment because it was their duty to preserve life, not end it. The family member – who is a theologist and spokesperson for the Catholic church said (publicly) that there was no ethical issue involved: each human being has the right to refuse medical treatment. I haven't spoken to him on the issue of ARV use in ME but I'm pretty sure his answer would be the same. There's no real ethical issue here. Each person has the right to choose what treatment they will or won't take. The only real ethical issue I personally see here is with those who would withhold treatment from the seriously ill. It's immoral.
I've tried many treatments over the years. Almost all have had to be stopped quickly because drug intolerance is a major symptom for me. I'm on high dose antivirals (Valtrex) now. I've been taking them for two and a half months with no problems thus far. I feel a lot better on them. Just to be pain free has changed my life completely. I don't know how they will pan out long term but I have a very good feeling about them. I wish they'd been given to me in the early years of the illness. If they'd worked as well in the early years as they do now (and I've been told that the earlier in the disease process the better with them) what a different life I could have had.
How could the course of young people's lives be changed by starting ARVs now? We don't know because as Jamie says, we are facing prohibition. We are being denied basic human rights (once again).
I am also a firm believer in a retroviral cause to ME. I've also wondered whether retrovirus + HHV6 = ME. These antivirals are treating the herpesviruses in me. My improvement on antivirals certainly fits with either theory.
My money is still on the WPI for the ultimate answer to what causes it.
>Thank you Jamie! The truth needs to be told. It seems there were ethics violations and breeches in confidentiality agreements. Not to mention non-disclosure of conflicts of interest. It doesn't appear that WPI set out to look specifically for this retrovirus, but came across the discovery through research. So why do others insist on trying to stop the research? The main thing that comes to mind is financial gain for themselves. If HGRV's had not been suspected in this illness then WPI would have continued looking is my belief. So why are some trying to put a stop to the research before it even starts? People can be angry because their prized physician is involved, but the fact remains he has his own agenda. That's clear to see. But that is not the rest of the patients problem to deal with. The research should be continued. I find it horrifying as well that patients samples were manipulated and those patients had no say in this. That in itself is breech in the patient and physician relationship. Then to receive an e-mail from their doctor? Not even a phone call asking if they wish to participate, or to let them know they were used to set up the potential shut down of the research that might find them treatment. I find that highly unethical as well as disgusting.
>Neal – I don't think anything has been taken away from the original paper – the negative papers are not replications, no matter how many of them there are. The original paper still stands.
In any case, even if XMRV does not pan out, the WPI are not going to stop looking for a treatment and a cure. Annette Whittemore wants to help her daughter get well, that is her goal.
>I think it is important not to let a difference of opinion on the status of XMRV cause a rift between organisations. We need to remain agnostic on the science and maintain cordial relations between all organisations and prominent individuals who promote reasonable biomedical research into this disease.
>the only thing worse than being seriously ill is being seriously ill and no one caring – especially the doctors. any research being done should and must continue, and the patient community can only continue to be that – patients. all of us are sick of the infighting, backbiting, backstabbing and bitching going on, and i for one am not just invested in xmrv, but invested in any causation found. the fact that the science in this instance can no longer take place behind the scenes is due to the complete lack of science up to this point. i got so tired of the smirk on one doctor's face anytime i brought up me/cfs that i quit going to him. my life has become too short and screwed up face ridicule from the people expected to heal. what happened with aids is what will happen with us – when we scream loudly enough -when we've made enough quilts…..
>I agree that you are entitled to think and write whatever you want and to be frank with your readers about your views. However, you have been quoting and presenting information you received from 3rd parties, and much of this is misinformation. Examples of this are evident in the emails you received and reprinted in this blog and misinformation about the CAA in another. I would suggest you check out what you are told before presenting it as part of your blog since the information is misleading and in many cases, not factual. To do otherwise is unfair to both your readers and to the parties you write about.
>Anonymous 2:39 PM,
I haven't said anything that isn't available in public documents, or the WPI letters to Science, which were posted with permission. The facts speak for themselves.
Jamie
>Insofar as ME/CFS is a disease with an etiology that is partly related to toxicity, it makes sense that second (and third) generation sufferers would be particularly affected at an early age.
To my understanding, a mother who is being affected by toxins will pass those on in a disproportionate amount to offspring through blood in the womb and then through breast milk. Here's a layman's book on the phenomenon, as it relates to pesticides:
http://www.amazon.com/Our-Stolen-Future-Threatening-Intelligence/dp/0452274141/ref=sr_1_1?ie=UTF8&qid=1307657310&sr=8-1
Children thus are born with "toxic terrain," without ever even having to come into contact with any environmental toxicity themselves. Insofar as this toxic terrain makes pathogens such as retroviruses more able to easily activate, this thus will occur at a younger age.
In reading "Our Stolen Future," my main thought was that what we need is for scientists (and pharmaceutical companies!) to focus on how to get our bodies to detoxify better.
I seriously keep thinking about leaches, myself. But surely we can do better than that!
Best,
Lisa Petrison, Ph.D.
lisapetrison at yahoo
>It is not helping patients to lower the discourse to the level of a high school cafeteria. The HHV-6 Foundation, an organization Loomis and Whittemore founded, and Loomis continues, does good work bringing together internationally researchers working on the [underfunded] beta herpesviruses: cytomegalovirus, HHV-6 A and B, and HHV-7. Dr. Dan Peterson has been working to create a body of work that shows how to diagnose and treat patients with this disease using objective biomarkers – more than one – and tayloring treatment as best he can to the individual. Unlike many others, he has never abandoned his patients after 30 years. Annette Whittemore founded and continues to support a research institute to get at the causes of the disease that has rbbed her daughter of a normsl life. Dr. Judy Mikovits came from NCI with a good reputation, jumped on the serendipitous finding that the prostate cancer patients also had defective Rnase-L, and in careful testing, along with MANY other scientists, found the retrovirs XMRV (first discovered four years earlier) in 2/3 of a sample of patients with CFS (Fukuda 1994) and ME/CFS (Canadian 2003). THEY ARE ALL PEOPLE DESERVING OF RESPECT.
Right now, there are a number of studies suggesting ways that the Lombardi et al findings could have occurred because of an entirely unexpected lab occurrence, but to my knowledge no one has proved that is actually what happened. I am appalled that a professional journal would actually call for an end to the research program on XMRV (and, apparently, all HGRVs) before the scholarship has played out – in fact, even if all this were proven to be true, I don't think that means you retract the existing research. Retraction should be limited to outright deception (and CDC can provide a lot of examples for that, but I'm not holding my breath for, say, that 2-day Wichita hospital study article (12/05) to be retracted. That remains? The hatchet jobs on HHV-6 and NMH by CDC remain? And the Lombardi et al study is supposed to be retracted? Sure is fishy.
THAT SAID, I would ask that the research on CMV, HHV-6A, EBV, and Coxsackie B in our disease ALSO be treated with respect, along with the (also desperately underfunded) researchers.
We are only helping our enemies by ripping up people in our own community. Make no mistake, we do have enemies. But they have names like Peter White, Simon Wesselt, Trudy Chalder, Bill Reeves, and Christine Heim. Not the names I have seen gossiped about here.
Can we positively support biomedical research into our disease, please? ALL biomedical research into our disease.
What we really need is parity in federal research funding (we receive less than 0.5% per capita of the research funding MS gets, and that is definitely not an overfunded disease). What we really need is for the CDC website to look like the Canadian Consensus document, not like Peter White's website for his psychiatric practice at St. Bart's, or a showcase for the narrow publications of members of CDC's CFS group, past and present. THAT is where this energy should be going. Not at each other.
>Truth isn't gossip. Undeclared conflict of interest isn't gossip. Conflict of interest has been analyzed in depth in the oncology literature. When industry sponsors a drug trial, the investigators who generally are paid consultants report the results correctly but overhype the significance. Money has flowed here. This is documented. Recommendations that go beyond the data (such as it is) have been made: no more research on XMRV, no one should take ARVs. This is serious and impacts on mine and other patients options to fight CFS and cancer.
Michael Snyderman, MD
>Thank you, Dr. Snyderman. Once again, we hear the truth.
It is clear to me from the wording Mary Schweitzer uses where her loyalties lie. She waxed eloquent about Dan Peterson:
[quote]Dr. Dan Peterson has been working to create a body of work that shows how to diagnose and treat patients with this disease using objective biomarkers – more than one – and tayloring treatment as best he can to the individual. Unlike many others, he has never abandoned his patients after 30 years. [/quote]
Her derision of Judy Mikovits is obvious when she writes:
[quote]udy Mikovits came from NCI with a good reputation, jumped on the serendipitous finding that the prostate cancer patients also had defective Rnase-L, and in careful testing, along with MANY other scientists, found the retrovirs XMRV (first discovered four years earlier)[/quote]
So Dr. Peterson worked for 30 years never abandoning his patients, while Dr. Mikovits "jumped on the serendipitous finding" made by others.
Mary reveals her bias as clearly as if she had stated it. Dr. Peterson is her doctor and she is angry because questions are being raised about his conduct. On the other hand, it appears she considers Dr. Mikovits merely lucky–or opportunist–taking advantage of work done by others.
Get a grip, Mary Schweitzer, you are not talking to a class of freshman college students eager for the pearls of wisdom you deign to drop from your lips. You are speaking to a group of battle-scarred patients who have been suffering from a damnable disease, many of us for decades, and we tire of your condescension.
I am tired of your dismissal of my valid concerns. You are receiving treatment which has greatly improved your condition. Most of us have not. I am still seeking treatment, and I think I deserve it just as much as you do.
We need clinical trials for antiretrovirals developed to treat HGRV's, and we need them NOW.
Defending the people who stand as obstacles to effective diagnosis and treatment of M.E. does not serve me or any of the other people who are still suffering without effective treatment.
Patricia Carter
XMRV+, 24 years M.E.
>Conflict of interest is exaclty what the words say. It does not mean you are necassarily nefarious but you must reveal them to journals and journals must take them into account. To not reveal a conflict of interest is unethical.
Just as in the reviewers for NIH grants must reveal any collaberations they have had with any applicants for grants as this excludes them fromthe scientific process of reviewing grants from those they have worked with.
>Hi Mary.. I have to disagree with you on a couple of points..
Dr. Peterson abandoned patients – for whatever reason – the moment he decided to set up his own XMRV study without any attempt at replication, without any consultation with the WPI to get the techniques right or at least to reconcile negative results, and without any attempt to clinically validate novel assays. That was an abandonment of the scientific method at the most critical time (so far) on the most critical scientific issue in ME/CFS history. Further, he has done nothing so far to counter the contamination claims in the Levy paper (remember, this study was HIS idea, not Levy's) nor the shocking request by the editors of Science, in the wake of this paper's publication, to retract the Lombardi et al study of which he is listed as a co-author. If that isn't a betrayal of patient trust I don't know what is. It's certainly more than an honest mistake. It has hurt patients big time. Can even his most loyal supporters deny that? And at what point does loyalty compromise their objectivity?
Secondly- as for ripping apart the community – the issue here is that some HHV-6 researchers and the HHV-6 Foundation are hostile to the idea of XMRV as a causative agent in ME/CFS. Whether that is due to their own biases or to concerns about funding drying up or both, it is the case. The WPI, for one, has never said that HHV-6 or other pathogens are unimportant – quite the contrary. Yet many patients who believe the key factor is HHV-6 or Lyme or something else have made it clear that they fear the emergence of a single-minded pursuit of XMRV, which will take the interest and funding opportunities away from their own favored causal hypothesis (or hunch); thus a rift in the community has opened up between those patients and others who believe in following the most promising research lead of a pathogen association to ME/CFS we have yet seen. Well, first of all, nobody is saying NOT to research other pathogens and aspects of the disease; second of all, the XMRV research lead is in danger of being buried, which explains the intense emphasis on XMRV in patient advocacy right now.
>When you say the second generation is sicker, two possible reasons come to mind. First is the dramatically increased vaccinations. The second is the hygiene hypothesis.
>What a revolting development THIS is.
As an HHV6Aer, approved for ampligen, who is XMRV positive, I'm feeling a little torn up about this rift.
But I remember that Dr Peterson is a man who is familiar with what it is like to have the ENTIRE WORLD turn against him for standing up for a principle.
He is not afraid to go his own way, if the evidence demands it.
On that basis, I would caution the CFS community not to take his silence as an admission of guilt. Judging by Dr Petersons history, the possibility remains that his evidence might be better than people think, and he is simply going his own way.
And is observing to see how willing and eager the CFS community is to cast him into the abyss.
>I'll note that every time I try to post a comment under my own profile, it doesn't go through, hence, I'm limited to posting as Anonymous because that's the only thing that "takes" for some reason. Nothing nefarious on my part, just some computer glitch.
http://www.CFSfacts.org
>Dr Snyderman said: "Lives could be saved with just one type of drug, a protease inhibitor – the one for HIV doesn't work for XMRV and is a key category of drug for treatment of MLRV-related disorders as proteins such as env are not countered by raltegravir and the RT inhibitors."
I remember about a year ago some virologist, maybe it was Rancaniello?, said that there are hundreds of drugs "on the shelf" that didn't work for HIV and that maybe some of them, already developed, could be looked at for MECFS.
Won't someone look at those drugs "on the shelf" and see if there are any protease inhibitors?
Thank you Drs D-J and Snyderman, for your honesty and your courage.
>Does Annette Whittemore require trashing her "enemies" as a condition of employment, that the two doctors working for her feel such a need to do this so regularly here?
No wonder Peterson left, if so.
>Dr. Snyderman and Dr. Deckoff-Jones.
I feel compelled to respond to the serious accusations made by Dr. Snyderman and posted by Dr. Deckoff-Jones. Unfortunately, Dr. Snyderman did not receive very good information.
Dr. Snyderman suggests that the reason for the skepticism about XMRV is that the “rich” HHV-6 Foundation has funded the negative XMRV studies because we believe HHV-6, not XMRV, causes CFS. Furthermore, he suggests that the scientists we have funded to produce these negative studies should disclose this “conflict of interest”. Here are a few facts:
1. Funding. We are a Foundation that funds projects solely dealing with HHV-6. We have never funded Konnie Knox, and have only funded Peterson to study HHV-6. We did fund Huber to look at HHV-6 & HERV K-18 in 2007, and for a similar project with Tony Komaroff in 2010. We gave Huber a $10,000 grant to look at the INTERACTION between XMRV, HHV-6, EBV and endogenous retroviruses. In this proposal, Huber said she expected to find XMRV and wanted to study how XMRV activated EBV, HHV-6 and HERV K-18.
2. Conflict of interest. The idea that any of the authors involved would somehow benefit from debunking XMRV is bewildering. If personal disagreements had to be disclosed, there would be very long lists on each paper! Disclosures involve commercial interests such as selling an assay, drug company relationships or a patent that would benefit the author if the paper were published. WPI, of course, does have a financial conflict of interest regarding XMRV (because they sell the assay and have applied for patents). Although the profits from their patents and assays will benefit the WPI for all the best reasons, it is a financial conflict nonetheless.
3. Peterson & Knox conspiracy theory. I called Konnie Knox today to ask about this study since I did not know how it came about. Knox said that Abbott Labs initiated the study to help them validate their XMRV assay. In other words, they had every incentive for the study to be positive! She also said that Dan Peterson was not included in the initial study, and that he was added later when Abbot did not find patients from the first practice to be positive. Abbott labs wanted to make sure. I wish you had called to ask before speculating.
There are several dozen scientists now who have co-authored a negative study on XMRV. Are they all part of this conspiracy? Seriously? Dan Peterson has been toiling diligently (at considerable personal expense) to find answers for CFS patients for over 25 years. As Annette and Judy know, he was very enthusiastic about XMRV at the outset. Many scientists feel the weight of evidence has shifted against XMRV as a pathogen in CFS. That is life, and it is science, but it is nothing personal. Many scientists don’t believe in HHV-6 either. So what?
3. Motive. The HHV-6 Foundation has no motive to debunk XMRV. We are not “rich”. We devote most of our limited resources helping virologists sort out the role of HHV-6 reactivation in transplant patients and refractory epilepsy, and sponsoring research conferences for virologists. We did sponsor two conferences on “Infections in CFS”, one in 2008 and another in 2009. We do suspect that HHV-6 is involved in the small subset of these patients with neurological problems.
We also acknowledge that there is not enough evidence currently to convince the medical community that HHV-6 plays a role in CFS. Sadly, we will probably never have that evidence until someone starts performing brain biopsies and immunohistochemistry analysis. That is why we concentrate our efforts on neurological conditions where direct evidence is possible.
I think we can all agree that Annette Whittemore and Judy Mikovits have been passionate advocates for CFS, and that they have raised the profile of infections in CFS. We all applaud their efforts to discover the root causes of CFS. If future studies prove them wrong, their efforts will not be in vain. I hope that their ardent and devoted followers will keep an open mind.
Kristin Loomis
>Erik, I wish that blogs had a "like" button the way FB does, because then I could click "like" next to your comment.
>Thank you Kristin.
>Since Knox was fired bye WPI and took the Science document patient information then used it against the WPI because she was fired. That is a huge conflict of interest and ethics violation! No matter how you try to sugar coat it. The Levy Knox paper should be retracted for failure to provide this information. Knox cleary had an axe to grind and used ME patients to get even. She is a disgrace. Peterson too for how he used and treated his patients as pawns in all of this. Dr. Ruscetti and other retrovirologists are finding these retroviruses. It's only a matter of time before all the dirty dealings regarding what's taken place here are revealed.
>To the commenter above who said they had to post annonymously because there post would not take with an identifier. All you have to do is write your name in your post.
Keith BAker
>To Kristin Loomis:
Thank you very much for your work, and for the work of the HHV6 Foundation, on behalf of ME/CFS patients.
Best,
Lisa Petrison
>I read Oslers Web, I've talked with Dr. Petersons staff and many patients and I was never a huge fan of his. I give him enormous credit and respect for his devotion to the CFS community, as I do all other CFS researchers and clinicians.
However, I sure changed my tune and opinion when I recently read an abstract Dr. Peterson wrote. I am convinved he holds an undiscovered KJEY to help solve the CFS/GWI/Epilepsy/Autism Puzzle. I was embarassed I had not respected him more from the get go.
Respectfully,
Julia Hugo Rachel
>If Peterson cares for patients, why is he not criticising these rubbish papers? Why is he staying quiet about bad research?
>Thank you, Kristin Loomis, for your intelligent and respectful post, in spite of all the paranoia you see on this blog. You and Annette and all the researchers are shining lights, and there are scientists and patients out here who realize that and are full of respect. We just get slammed to death if we ever say it on these forums. But one more time, as Mary said, "Can[people grow up and…] positively support biomedical research into our disease, please? ALL biomedical research into our disease." With respect for the people who know a lot more about their field than the kibitzers?
>Dr Peterson has not abandoned patients. Perhaps someone should talk to him to get his perspective on the situation before speculating about his motives on a blog?
>Peterson has made no comment on the flawed paper Knox et al. If he has not abandoned the patients why has he said nothing? His behaviour is of no help.
>Under the current climate, waiting for the furor to settle down might be a prudent course of action before presenting evidence which would meet a very hostile reception.
As one who has been on the receiving end of "Kill The Messenger", I can appreciate that science can fall completely flat when people are not prepared to hear it.
>Dr. Bhakta is an excellent choice to have at working at your clinic. She is a motivated doctor interested in CFS and using lab testing other doctors have not used like the Cytokine Panel. These cytokines are inflammatory and she provided me a supplement called Avipaxin which regulates these cytokines. I found Avipaxin to be helpful and reduce symptoms.
Patients will like her.
Sincerely,
Al M.