When I started this blog, I was a sick patient, excited about a process of discovery that was unfolding for me. I had a lot of anger and dismay at the information vacuum surrounding the situation. My motivation was to inform and do whatever I could to move the process along. Since then, I’ve recovered a large degree of function and have returned to private practice in Hawaii. I also work for the WPI, as an independent contractor, in very specific capacities, still intending to help open the clinic in Reno. At this point, of the many perspectives I share in this epic, I identify most with being the mother of a patient, and of a healthy 16 year old son, who has some of the same little things my husband, daughter and I do. I have suspected that he has what we have for eight years. He had the most positive tick borne disease tests of anyone in our family. Dr. Charles Ray Jones, who I believe to be a very fine doctor, decided wisely not to treat him for Lyme. He has done very well, can push the envelope. But under the circumstances, I worry, as we all do for our unaffected children. So my motivation for writing remains essentially unchanged. I only want the truth, so that Ali can have a life and my son not lose his. It’s not because of any affiliation, or being invested in anything other than getting to the bottom of it, so that we can all have some meaningful treatment, finally. I want the medicine to move forward, and it shouldn’t have to wait until the scientists dot all the i’s and cross the last t.
When I learned of the request from Science for retraction of Lombardi et al and the EEC, I cried off and on for a day. The thought that brought on tears was “the work is going to stop.” Nobody will put their grad students on it, because it will ruin their careers. No one will spend the money because Knox et al are trying to put the nail in the coffin. This can’t be allowed to happen. I’m not the best person to pick the paper apart technically, though it has some obvious flaws that the scientists will address, I’m sure. But the logical flaw is more basic than any of the details. Unless someone has a test that can identify a sick person, a negative study, using different methods from the original study, doesn’t contribute anything new. Absence of proof is not proof of absence.
The only thing new in the Knox study was Dr. Peterson’s participation, the authors trying to suggest some sort of uniformity of patient selection with the original study, as if patients are hard to come by. Since they weren’t the patients from the original study, the fact that they came from his practice contributes nothing. That only means that they came from a doctor with a conflict of interest. All the paper shows, along with some inane speculation, is that Knox’s lab couldn’t reproduce VIP Dx’s results. I am guessing that Abbott developed the serology test which didn’t work that was used in the study, but the discussion of their negative serology data is too superficial to consider seriously. Serology, in the end will be the clinical key. Patients don’t make antibodies to contaminated specimens and PCR is clearly too finicky. Serology has been left out of most of the discussion to date. We know so far that tests derived from monkeys infected with a VP62 clone don’t work on humans. We don’t think the currently available test from VIP Dx is sensitive enough. We believe that positives are true positives, but there are false negatives, including people with positive cultures. The right test should be a goldmine for someone. It’s not that it’s a problem for us if someone makes money on our disease, it’s that sometimes the quest to own the patent supercedes the good of the patients. If greed is the motivator, so be it, as long as it leads to progress. In this case, people went to a lot of trouble to slow progress.
I accept that there will be some people who don’t like me for speaking out. Now that I’m not powerless anymore, I’m supposed to be more circumspect. Use my inside voice. It’s worth it for me to take the flak, for the many patients who say that sharing my thoughts helps them to think about their illness and options. So let’s see what I’ve said that’s so inflammatory. Konstance Knox once had a relationship with the WPI, that didn’t end well. Easily verifiable. Dr. Peterson also had a relationship with the WPI that didn’t end well. I am not discounting all of the work that he did for ME/CFS in the past, but that was then, this is now. If he was concerned that there was a problem with the testing, why didn’t he use the resources at his disposal to work on it with the scientists at his own institute? Instead he gave specimens to a scientist with a conflict of interest. All of this must have been a confusing nightmare for the patients involved. What did he accomplish? Res ipsa loquitor.
As I’ve said, I don’t know Dr. Peterson personally, but I am working with the same people he did and I know what motivates them. The Whittemores have put it all on the line. They are dedicated to getting to the bottom of the illness, whatever the answer, for the most personal of reasons. Dr. Mikovits is an honest person who cares deeply for the patients. I am proud to call her my friend and it breaks my heart that she has to live through this. She in no way deserves to have her integrity questioned. She has no financial stake. She is staying to weather the storm for us, the patients. It started out for her as science, but getting to know the patients has really affected her on a personal level. Nobody wants to get to the bottom of it more than she does. She should be getting assistance, not a bunch of people trying to discredit her.
I don’t believe that my writing should alienate anyone who truly wants to help. I hope that at the very least, it makes the protagonists consider their own motivation. I haven’t criticized anyone whose heart is with us. I am being cast by some as an angry conspiracy theorist. In my opinion, human frailty is almost always a better explanation than nefarious schemes. Greed, ego, shame, desire for revenge are generally enough to explain what moved a particular situation. In this case, there was a joint effort involving disgruntled former contributors, people working for a company that makes it’s money on lab tests, and a doctor in an academic setting (about whose motivation I know nothing). It doesn’t really qualify as a conspiracy, but it smells. And Science’s cooperation with it smells. Harmful to patients everywhere if it stops research. As for anger, I’m mostly not angry anymore. When I’m not agitated about the lack of scientific progress, I’m a pretty happy person. However, the events of the weekend, really shook me up, made me very mad, and sad. And scared, that the work could stop.
The idea that 22Rv1 was created in a lab after CFS already existed, therefore proving that XMRV is a lab contaminant and nothing more, is another logical fallacy. It’s pretty clear at this point, that XMRV isn’t the whole story. Similar events to the one described in Paprotka et al, with other proviruses could have happened before that, including naturally, even before modern tissue culture or xenografting techniques. Neuromyasthenia is hardly a new phenomenon, first described a few hundred years ago. What is new, is how common it has become. I can’t imagine why there isn’t more concern that the cell line produces a fully replicative exogenous retrovirus capable of infecting human cells. But we can all relax now because Konstance Knox says that human serum restricts it in vitro, in some unspecified way and any antibodies that might be found are only some kind of “autoantibodies”. Well, that’s a relief for the human race.
The over the top concern about the use of antiretrovirals seems the height of paternalism, especially when you consider that HIV drugs are used to prevent transmission to healthy high risk people and unborn babies. Here’s an exciting article, suggesting another possible long-term benefit of antiretrovirals for us: Mouse viruses and human disease. Stewart/Cameron
I’ve been asked now and again why I don’t wait until I know the outcome of the therapies we try before reporting. Whether a particular therapy does or doesn’t help us is almost irrelevant, as many things help a few people and not lots of others. The important thing is to share the ideas in order to further the discussion. We are beginning to have enough information to think ahead. Physicians are supposed to connect the dots to help their patients. In this case the dots turn into a pretty frightening picture. It is unfortunate that writing about the implications of human gamma retroviral infection makes one sound like Chicken Little. But the sky really is falling.
>Thanks, Jamie. Keep using your outside voice.
>I am so glad you are not waiting until you know the outcome of the therapies before reporting. After 25 years, I have had enough waiting. What you are doing is giving desperate people hope, and you are doing that because you are being honest about your experiences. I trust you. I know that you are speaking the truth, and I know that you understand what is actually happening.
When the sky is falling, it seems only logical to sound a warning, and I am grateful to you for doing so. Your explanations, although revealing a frightening situation, are actually reassuring. You are telling us that you are seeing the same thing many of us are.
Bless you and your family. I hope that all of you continue to experience more health and happiness every day.
Aloha!
Patricia Carter
>Thank you, Jamie for your report and your integrity!
The article you linked to, really puts some of the puzzle pieces together for the whole picture.
>Keep talkin' friend. This is what you were born for.
>Aloha nui loa Dr Jamie.
>"I am being cast by some as an angry conspiracy theorist."
You forgot willfully ignorant, significantly mis- and ill-informed, rash, irresponsible, irrational, etc.
Please do yourself and all your readers a favor and talk to someone about the issues you would raise in your blog whose name doesn't start with Judy and end with Mikovits. Please. Jesus Fucking Christ.
Issue #101- One of the most oft-voiced criticisms of the negative studies has been in regards to patient selection. The CDC, Dutch, several of the UK studies, etc. were all plagued with criticisms of patient selection. Dr. Peterson's involvement is in direct response to these criticisms. In fact a significant amount of the patients he selected had all reported being tested positive by the WPI and/or VIPdx. Are you saying that now patient selection doesn't make a difference, including patients previously reported as being XMRV positive?
#102- Abbott made XMRV-specific antibodies and yes these XMRV-specific antibodies came from monkeys. So monkey antibodies which were shown to be specific for XMRV are useless but the goat antibodies used by WPI and which react to all sorts of shit are just super top-notch?
#103- The WPI has just as many patents, licenses, whathaveyous as all the other players in this XMRV stuff, yet for all these other groups these patents, licenses, etc. are just completely out of line and beyond the pale but magically for the WPI they pose absolutely no CoI whatsoever. Double standard much?
#104- It's not that people mind you, or anyone else for that matter, speaking up, it's simply that what you say is so fucking ignorant and misinformed that it boggles the mind. There's a difference there.
#105- If the WPI has so many ex-collaborators who refuse to work with them anymore, maybe it's not the laundry list of ex-collaborators that have the problem, did you ever think of that possibility?
#106- It makes absolutely no difference whatsoever how well-intentioned the Whittemore's, Dr. Mikovits, etc., are. No one questions that. Being well-intentioned has absolutely nothing to do with a mistake being made. In fact Dr. Mikovits is getting plenty of assistance, she's being assisted out the wazoo by lots and lots of people who are taking their own time and money to show her that XMRV is a freaking laboratory contaminant and not the end of the world.
#107- It's not about different recombination events producing different XMLV's. Despite what they say in their press releases and public presentations, the WPI (and the Cleveland Clinic as well) have only uploaded viral sequences that are virtually identical to the 22rv1/VP-62 clone, yet at the same time this clone is somehow not representative of the 'vast family' of XMRV's the WPI claims to be finding and therefore is completely useless to boot.
>Cont'd.
#109- The Alter/Lo mouse ERV's are not the same thing as XMRV and therefore are not representative of 'sequence variation' in XMRV. If you think they are, here's what Harvey Alter is saying now in response to the XMRV/contamination claims- "Through an NIH spokesperson, Alter replies that the PNAS paper did not link XMRV to chronic fatigue syndrome but rather the larger family of polytropic murine leukemia viruses to which XMRV belongs. The paper never reported finding XMRV itself. Thus the finding that XMRV may be a contaminant traced to cancer cells in mice “does not pertain to the finding” published in PNAS, Alter says." Please note, a 'family of viruses' is not the same thing as sequence variation in an individual virus.
However even the notion of there being a 'family of viruses' is significantly under question. If you watch the ME/CFS State of the Knowledge workshop, there's a part where Dr. Coffin shows a slide in which he compares the Alter/Lo sequences with deliberate contamination in which a colleague of his intentionally cut up one mouse cell into 30 pieces and amplified each of the pieces. A phylogenic tree of the results are indistinguishable from the Alter/Lo sequences.
Also, a recent paper reported that a phylogenic tree of the 're-tests' done by Lo and which were presented as evidence of viral evolution actually could not have come from the earlier samples!
"The exact variety and nature of our sequences show very close parallels to those reported by Lo and colleagues from patients with CFS especially in the set of samples from recent repeat isolations. They argue that the recent sequences (MLV001–MLV006; HQ601957–62) show evidence of viral evolution from an earlier sequence (assumed here to be cfs1 since this was identified in 18/21 sequences). However such evolution would be predicted to show monophylogeny. Our maximum likelihood analysis of these sequences is clearly inconsistent with such a prediction. In particular we see no obvious explanation for a sequence of the modified polytropic cfs1 type evolving into a polytropic sequence like MLV002 or MLV006, Similarly it seems implausible that MLV001, which shares with 9C a deletion encoding 15 amino acids of matrix (MA), presumably precluding virus replication, could evolve from cfs1. In the absence of evidence for replication competent MLV in the samples reported by Lo and colleagues, we believe that the finding of a population of gag sequences in the reagents, as well as the coincidence of a virtually identical replication incompetent MLV in our study and that of Lo and colleagues, must call into question the biological provenance of these sequences and therefore any conclusions drawn concerning their relationship to CFS."
http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0019953
So anyways, it's a really neat area of interest if you actually look at the data but I guess being too busy covering up one's head because the sky is falling precludes such actions. Oh well.
Have a nice evening!
>Oh yeah, I stand ready to eat every single one of my words should the WPI and it's collaborators be able to tell patient from control samples in the upcoming multi-lab studies, something they have not been able to do thus far. Only time will tell.
>I'm glad I found your blog…
Please keep writing.
-18+ year ME/CFS sufferer
>Ok perhaps we can now focus on some science
Knox/levy retested 39 patients who had been found positive by PCR for GAG sequences in Lombardi et al.They did that using the PCR assay which had only found 7% of patients positive for XMRV sequences in Lombardi et al.just to be good scientists they reduced the concentration of DNA and raised the annealing temperatures thus reducing the sensitivity further.They then compared their results with those produced by testing the same patients at VIP-dx which used the methods which detected gag sequences in 67% of patients in the study by Lombardi et al
To their total shock the vip-dx results came back positive while theirs were negative.They were so shocked in fact that they performed a very similar RT-PCR to that used by Lombardi et al
It was so similar in fact that they used different primer combinations, magnesium concentration annealing temperatures and times and different nucleic acid extraction procedures
When they could not find any trace of gag sequences then they became so worried that they decided to use a serology approach on patients whose prior serology status was not revealed and decided not to culture the samples prior to their non optimised western blot assay
I am happy to go through the reasons why their approach would not have a hope in hades of working but would need to stop laughing first
I will simply conclude with the following
from their comments the previous three posters would be entirely happy with the following scenario;
Their loved one(s) tested positive for HIV using a clinically validated and hence liscensed PCR and western blot assays.They were diagnosed very early and prescribed HAART therapy.
They were then retested using a PCR and western blot assay which had never demonstrated any ability to detect HIV in a clinically infected person.Their loved ones tested negative.They were so relieved that they discontinued their HAART therapy and ultimately endured a horrible death as a result!
I wonder how the last three posters would feel towards those people who could not be bothered to determine the clinical sensitivity of those assays?
>Thankyou once again for a terrific post Jamie. Keep them coming and ignore the professional goaders, the professional naysayers, the professional buryers of the truth.
>Can someone comment on the use of mink lung cell lines instead of LnCAP in the Levi/Knox study? What was the rational behind this. Is there some precedence in the literature that would lead us to believe that those cell lines would be better than the LnCAP lines used in the original Lombardi paper? (I am assuming both lines are tested negative for contaminants).
>Thanks for that breakdown Gerwyn.
Great blog post Jamie. What you are doing needs to be done. Never question yourself for it.
As for the definition issues, I have believed since the beginning that far too much was being made in the criticisms of the negative papers of patient selection criteria.
While certainly there are many very difficult issues with establishing who exactly is an ME or an ME/CFS or a CFS patient and whatever any of those things mean – the story all along should have been that 0/0 papers used flawed methods. Simple as that.
Any paper that fails to detect even a background rate of infection is not using correct methodology and it has nothing at all to do with how the patients are defined. 0/0 equals methodological problems. This should have been obvious to everyone.
>Hi Jamie.
And thank you for blogging. I am very glad for your blog and for you telling things like it is.
Dont let all the crazies leaving those horrible comments discourage you.
This is happening on the patients forums too, the trolls are crawling out from every stone now.
Please dont let them get to you. You are doing us patients a great favour and also giving us great hope by blogging about your treament and giving us your view on what is happening.
Thank you from the top of the world in Norway.
Hatshepsut
>One of the reasons I began to follow the community that is continuing to explore the possible link between XMRV and M.E is something a Doctor said following one of the negative studies.
I'm paraphrasing, but it was akin to "I don't think there's a link, but I guess we'll have to keep doing the work until the patients are satisfied."
That bugged the hell out of me. Considering the sheer number of people that are ill, it puzzled me why an alley shouldn't be fully explored.
It's hard for a layperson to really follow what's going on here, beyond clear slip ups in logic. I've also gone into this from day one repeating to myself the idea that any belief I could have between XMRV and M.E is a convenient belief given my lack of knowledge, so I should preserve my agnosticism.
However it goes without saying that both sides of the argument deserve that agnosticism.
If the anti-XMRV lobby wanted to win any hearts and minds, for me I need to know the answer to two simple questions.
1) How can a contamination theory stand up when:
a) The percentages of XMRV found between healthy controls and M.E patients were so highly contrasting?
b) When the contamination theory has been peddled as a plausible explanation, it effectively becomes circumstantial evidence. If it could be shown contamination could happen, it does not mean that it has. Is science less thorough than due process?
2) Why is it every time a 'replication' study is released I can log onto a forum where people within a day or two are providing me with *citations* (this is a key word, since it's something I've found in greater frequency amongst those who the naysayers would like to adorn in tin foil hats) detailing the conflicts in methodology in reference to the original paper.
For time being I believe that, even if you can't possibly know the truth (like myself), as M.E patients it behoves us to see alleys of possibility explored to their logical conclusion and not buried because people think work should be done elsewhere.
You can do that work now and instead of illogically burying things, you can stand up to the government as scientists and demand more funding. Certainly many of these scientists seem to have the proverbial batphone to certain sections of the press, why not exploit the batphone for a better cause?
>We desperately need the WPI to continue research and they can't do this without money. I urge anyone reading this to find out about the Vivint charitable giving contest, in which the Whittemore Peterson Institute is a strong contender to win $250,000 if enough people vote for it on Facebook.
A big effort is being coordinated internationally to support the WPI in this and every vote will count. The main phase of the contest begins on 14 June and daily voting continues for 11 weeks. It's worth opening a Facebook account just for this purpose.
No-one else is helping us – we must help ourselves! Please everyone, join in. Here's the link:
http://forums.phoenixrising.me/content.php?434-Win-money-for-ME-CFS-Research-Round-II-1.25-million-Vivint-Facebook-Contest
>John Anonymous is at it again. Afraid to identify himself. What does he have to hide? Could it possibly be a consultant fee from a Foundation? I don't know but it makes a lot of sense to me. Anyway he has no credibility until he identifies
himself and we see what his credentials are and potential conflict of interests.
Michael Snyderman MD
>i think it is time to stop donating money to the wpi until the dust clears on this xmrv thing. i don't doubt the motivation of all involved at the wpi but it looks like xmrv connection has not worked out. what worries me is that nobody there wants to face reality.
>The anti XMRV camp in 2009-2011(As in the day of HIV homophobia in the 1980's) haters need to face reality, the Lombardi paper of 2009, have never been replicated so the Science stands. (XMRV is therefore associated to people with well definded CFS until the paper is not replicated).
I have had private Cytokine & Chemokine tests done that are the same as Lombardi et al's , 2011 paper that showed 94% of people with XMRV+ CFS had the same inflammatory signature.
I am also XMRV+ by culture, but PCR negative and have had ME for 22 years, home bound.
This shows that PCR for XMRV detection in the blood cells of ME CFS is a poor method to detect XMRV and that inflammation is at the central core of ME.
>Anonymous above, you are insane. The WPI needs donations now more than ever. If the normal mechanisms will not pay for the actual SCIENCE to decide this issue, patients must find other ways to make sure this issue is resolved appropriately.
There may be 10 negative studies, but not a single one has been a replication attempt and it is disingenuous of their authors to pretend that they were.
>Dear Anonymous 12:40 AM,
Why does engaging in the discussion make you so angry? And why the need for anonymity? Why hide? I, too, will eat my words when given a reason to. Being wrong isn't the worst thing in the world. Not knowing is. Even John Coffin said it might be another retrovirus. Is he looking for it?
Jamie
>I won't stop donating to the WPI because of bunch of people who can't support what they are saying tell me to do so. Think for yourself, get a brain and use it! Every study that "proves" the the study wrong has serious problems. This is a serious issue and we need serious people to deal with it. LISTEN to what Dr. DJ and Gerywn are saying for heaven sakes…open your ears and listen!!!!
>"Silence never won rights. They are not handed down from above; they are forced by pressures from below." — Roger Baldwin
>I don't think John Anonymous needs to reveal his identity for his points to be worth considering.
>Anonymous (ERV) is angry because you're pointing out the truth. You got it Jamie.
>Please sign the letter to Science and please help spread the word. They must account for their actions.
http://www.change.org/petitions/an-open-letter-to-the-editors-of-science-2
>I got ME in New Zealand in 1984. A retrovirus, or retroviruses, was suspected in New Zealand at that time as the most likely cause. ME emerged in epidemic form in New Zealand at the same time the AIDS epidemic was taking hold, and had all the fingerprints of an acquired immune altering illness. It looked like a duck, walked like a duck, so most likely…
What is more, the illness that I and many others were struck down with (quite literally) in 1983 and 84 was identical to the illness that many HIV sufferers experience within the first few weeks of infection. I've heard it described as "the mother of all fevers". It is the fever produced from the battle the body does when it puts up the fight of its life against infection by a retrovirus. I thought I would die from that fever, but I didn't die. I woke up the next day with ME and I never recovered. I was a perfectly healthy young woman before I got that fever.
Like everything else about this illness, this initiating fever has never been considered to be of particular significance for some reason. It's often recorded in patient histories as a flu like onset. Well a flu like illness is what it is NOT. It has been overlooked, trivialised, and pushed into insignificance along with all the other big clues in this illness as patients have simply been broadly classified as acute or slow onset.
I have been about as sick as it is possible to be with ME, particularly in the first decade of having it. I have been bedridden for months at a time in darkened rooms, unable to tolerate light, sound, touch or smells. I've suffered seizures, and I've had to live with intolerable muscle, joint and spine pain that only major opiates relieve. I've not been able to tolerate prescription drugs from the day I became ill, other than antibiotics (interestingly) and very low dose tricyclics, so I have had virtually no relief from my symptoms. I've been told that drug intolerance is a symptom of ME. I've also been told the pain of ME is like the pain cancer patients suffer near the end of their lives. It's pretty bad, but worse by far is the sense of utter hopelessness that comes from year after year of no progress toward treatment or cure as you watch all the best years of your life slip away. It's just so sad.
The WPI have given patients hope. Their research fits with what we know about this illness. That has not changed, in spite of recent events. As a direct result of their research, in February this year I was tested for evidence of 'non permissive' viruses: EBV, HHV6 and Parvo virus. I tested positive for all three (negative for CMV). I began taking antivirals and guess what? Not only can I tolerate these powerful drugs in high doses with no side effects, I am pain free after two months on them. After 28 years. I'm not a scientist or a doctor but this would suggest a viral cause to my symptoms would it not? It would seem to confirm that (as suspected in 1984) something has disregulated my immune system in such a way that viruses which should be held in check by my immune system have not been, and that they have been making me very very ill for a very long time. "It's elementary my dear Watson" springs to mind.
Thank god for the WPI. I have no doubt that they know what they are talking about, and that their research will uncover the cause of this illness. They are almost there. If the government won't fund their critical work, then we patients must somehow fund it. We don't seem to have any other choice. We have to keep on badgering friends and families to donate. We really are almost there I think. If we can just fund them to finish their work then we can do it.
>Dear Lisa,
Congratulations on your improvement. I'm sure you will savor it.
Thank you for sharing your history and thoughts,
Jamie
>I am a patient and I am absolutely appalled with this and the previous blog as well as many of the commentators. The mentality is disgusting.
Mikovitz et. al. have set back the progress of ME/CFS research and valuable time has been lost that wasn't necessary.
The WPI did not use the more accurate tests that Singh used to test for contamination that have been developed since the science paper was published. Why don't they get up to speed and use these tests? At this time, the onus is on the WPI to show that their labs are not contaminated. This stubbornness and defensiveness may be one of the reasons the science study will be retracted.
Screaming, paranoia, conspiracy theories, inappropriate behavior of many of the"XMRV/HGRV is the only answer" club, make PWMECFS look like a bunch of lunatics. You are marching us into the very stereotype we have been trying to overcome.
Deal with the reality. Accept it. XMRV did not pan out. I would have loved for it to but the it didn't. It's time for research to move on.
The WPI will never get back any credibility after the way they've behaved. It's too late for that to happen and many had great hopes. I know I did.
You're all acting like a bunch of thugs.
Have a good day.
Laurie B./gapsych :>)
>Laurie B. so nice to see you are still if full form.
"the more accurate tests"? According to what measure? Failing to find any virus at all is "accurate"? Coffin's contamination assay is best just because he says so, despite having never actually verified it in light of the criticisms that have been made of it? Regardless the point is moot because Alter has confirmed that they DID check using this assay in his public statements. Learn your facts before claiming to know anything at all about the subject and relentlessly attacking sick people.
>Anonymous 8:09 AM,
I agree that it isn't necessary to know who posted for the ideas to be worth considering, but it is necessary to know in order to consider the motivation behind the words.
Best,
Jamie
>Looking at "motivation" is not the language of science though. Why does it matter so much here?
Jamie, I can understand your being emotional about this. But when you and Michael Snyderman say the same thing, determinedly, it seems like it must be coming from the WPI.
Judy Mikovits is a respected scientist. For her to be focusing on the issue in any way other than proving the science itself seems odd to me.
>Lisa Simpson said…
I got ME in New Zealand in 1984. A retrovirus, or retroviruses, was suspected in New Zealand at that time as the most likely cause. ME emerged in epidemic form in New Zealand at the same time the AIDS epidemic was taking hold, and had all the fingerprints of an acquired immune altering illness. It looked like a duck, walked like a duck, so most likely…
What is more, the illness that I and many others were struck down with (quite literally) in 1983 and 84 was identical to the illness that many HIV sufferers experience within the first few weeks of infection. I've heard it described as "the mother of all fevers". It is the fever produced from the battle the body does when it puts up the fight of its life against infection by a retrovirus. I thought I would die from that fever, but I didn't die. I woke up the next day with ME and I never recovered. I was a perfectly healthy young woman before I got that fever.
——————————————–
Now that's interesting!
Dr Peterson/Cheney's 1985 "Tahoe-Flu" consistently had subclinical temps, which is noted by Dr Hyde as being characteristic of Myalgic Encephalomyelitis.
At the time, viral infections were considered so inseparable from elevated temperatures, that our lack of a fever was used as evidence that we were not as sick as we claimed.
It did no good to point out that our temperature was abnormally low.
>BRING ON JUSTICE FOR 20 MILLION.
love crafter kate xoxoxox
>i agree with the disagreements – if you don't subscribe to the anitviral approach don't watch. wait until someone else does something to call attention to cfs/me. if mikovits et al did nothing else, they at least got all of us together and paying attention, which is way more than anonymous's posts.
>Any public search for the truth will create enemies. They are not evil people, they just have the usual human biases. Dr. Jamie, you just keep being your wonderful self, and don't let the naysayers get to you.
Excellent comment, Gerwyn. Thank you, as well, for doing what you do.
The WPI need our help more than ever. Join Count ME In! http://countmeincampaign.blogspot.com/ or https://www.facebook.com/event.php?eid=104227606318513&ref=ts and vote in the Vivint competition:
First time voter? Like here http://www.facebook.com/VivintHome
Then vote daily here http://www.facebook.com/l/f5e98ryNnjFbDp1eL6snOYHiR3Q/www.vivint.com/givesbackproject/charity/769
>have had severe ME over thirty years
my two children ill with ME in separate epidemics at different schools
thank you Jamie for helping us.
am very pleased that you are feeling better
our very best wishes for your husband and children's health
>I have to get one small detail off my chest, that keeps coming up in these salvos:
Who says the WPI is focused *only* on XMRV/HGRV?
That may be, or have been, a main point of focus, due to a discovery that seemed promising as an avenue of research.
Which then became a political hotpoint to which much of their public commentary has been forced to respond, due to a scientific/political climate that clearly favors one view over another rather than remaining open until all the data has been thoroughly evaluated and given a fair chance to be published.
But nowhere have I heard or seen Annette Whittemore state that this is the only area of interest for the WPI.
As the parent of a long-term patient, it would seem she is well aware of the myriad factors involved in the disease, and the need for a multi-pronged and multi-disciplinary approach.
>Thank you Leela. Yes I do believe if you read flyers by WPI you will see their research is translational and not just on X. You will see their Leadership team , and what their future goals are for the Institute. I think it's very unfair to attack the Whittemore's when it's obvious they took the high road for a very long time with Dr. Knox and Dr. Peterson. They took the approach of not saying anything because they didn't want patient relationships or friendships to be harmed . I know the truth I work very closely with the Whittemore's but I used to work with Dr. Peterson. He was a good doctor. He has for some reason maybe the economy maybe for some other unknown reason Changed. He is not the same man nor the same doctor I used to work with.
>The scientific method is blindingly simple
One changes one independent variable at a time and note the effect on the dependent variable
In this case the independent variables would be the choice and concentration of primer sets DNA/RNA concentration,oligonucleotide concentrations,magnesium concentration,salt concentration,PH buffer composition annealing times and temperatures denaturating times and temperatures,choice of reaction vessel and even PCR machine.
The dependent variable is the detection of XMRV
Replication involves keeping all independent variables unchanged
The 00 workers changed all the independent variables
Now is there anyone reading that does not understand that?
PS if you want the best chance to get well donate to the WPI
if you want the best chance of staying sick donate to someone else
Anyone that donates to PR is in my opinion misguided
>Thanks, Jamie, for continuing to speak the truth. I am so glad you have recovered your health enough to return to private practice.
I have been sick for 2 decades and I see problems in all of my children. My oldest has suddenly developed severe seizures this past year.
Please, never quit speaking out for us.
Thanks, Ann
>There is no individual who is more "key" to the inception of CFS than Dr Peterson.
I would like to hear his side of the story before trying to form any opinion as to what he is doing.
Does anyone know which other areas of interest the WPI intends pursuing?
>I enjoyed very much reading this post. If I can say "enjoy" when we speak about a matter that really frightens me too, as a patient.
I am arfraid that we might never get to know if XMRV is "it" or isn't "it", and that what would happen if the science would stop now, or at anytime before we do the best science possible – and we are far away from that (for example – there had been no full-replication studies and also the Lipkin and BWG studies are not done yet).
But, my dream is that at the end of that story, people like you, like Dr. Mikovits, like Dr. Lombardi and ofcourse like Annette Whittemore would be remembered as heroes who remained standing even when a torando of attacks attacked them – and were eventually shown to be right. Also, even if in the end it would be realised that XMRV/HMRV isn't "it" – these people would still be MY heroes, because of everything that they did and are doing for us and because of their unprecedented determination to find treatments for our disease.
>This article makes it seem like if XMRV doesn't pan out, Wessely's exercise therapy is the solution for this disease.
http://www.nature.com/news/2011/110603/full/news.2011.347.html
I don't like the fact that everything we have seems to be riding on this retrovirus, with regard to how the masses view this disease. It makes us way too vulnerable.
One positive note this week: many thanks to Rivka, for making it clear that — with or without the retrovirus — this is a scary, serious, REAL disease.
http://msmagazine.com/blog/blog/2011/06/02/rivka-solomon-acts-up-chronic-fatigue-be-damned/
I'd like to see more focus on that point from everyone involved, including the WPI.
>Random thoughts:
1. With each negative study, Judy Mikovits, et. al. stand firm on the merits of their original work. They explain in detail why each study to date has done nothing to punch holes in their 2009 publication. Not only does the WPI's explanations make sense, but why would highly respected researchers commit professional suicide by repeatedly defending poor science? Also, why aren't more big name scientists jumping on board with the negative studies? Because the studies are a bunch of bull.
2. As for all the "crazies crawling out from every stone" on the ME/CFS websites, some may be hires of "special interests" with a mission to divide, confuse, and waste valuable energy. Establishing a viral cause in ME/CFS, Fibromyalgia, Autism, MS, etc. with possible affiliation to vaccines must terrify the corporate elite and their cronies in government who have allowed these microbes to get a major foothold in the human gene pool. They will do what it takes to keep this public health nightmare from getting out…like threatening the editor of Science magazine.
3. The PA mentioned some time ago that WPI would be targeted for take-down. This was the biggest hit yet, but the ME/CFS community isn't stupid and can't be fooled by propaganda and cheap tricks.
We will never, ever abandon the WPI.
>"The anti XMRV camp in 2009-2011(As in the day of HIV homophobia in the 1980's) haters need to face reality, the Lombardi paper of 2009, have never been replicated so the Science stands. "
Exactly. And that Science showed that 10 times as many healthy people were found to be infected with XMRV compared to patients.
"The Whittemores have put it all on the line. They are dedicated to getting to the bottom of the illness, whatever the answer…"
And Peterson hasn't been dedicated to getting to the bottom of this?
"Who says the WPI is focused *only* on XMRV/HGRV?
That may be, or have been, a main point of focus, due to a discovery that seemed promising as an avenue of research."
Of course they were focused soley on XMRV. That's precisely what bothered Peterson, because he knew from experience, that there were and are many other factors involved. Dr. Mikovits admitted publicly within a month of the publication of the paper, that she didn't know much about ME/CFS.
But having said that, I do appreciate the efforts that anyone and everyone has put into trying to piece this puzzle together. I feel sorry for "Gapsych", a long time complainer, who discounts practically everything that is found to be helpful. And she calls everyone else a "thug".
Hilarious and sad at the same time.
>ErikMoldWarrior said…
Now that's interesting!
Dr Peterson/Cheney's 1985 "Tahoe-Flu" consistently had subclinical temps, which is noted by Dr Hyde as being characteristic of Myalgic Encephalomyelitis.
At the time, viral infections were considered so inseparable from elevated temperatures, that our lack of a fever was used as evidence that we were not as sick as we claimed.
It did no good to point out that our temperature was abnormally low.
My temperature (and blood pressure) have been abnormally low since the disease entered the chronic phase. I didn't experience an elevated temperature again for more than twenty years.
>The main point of the new institute building is to put a state of the art clinic and lab next to each other in order to do translational research – to find measurable patient baselines, and monitor carefully and accurately the effects of various treatments, thus testing hypotheses, and finding effective treatments.
This is what funds are desperately needed for.
Annette Whittemore told us at the Invest in ME conference a couple of weeks ago that the WPI originally went looking for a Herpes virus, and that they have an open mind about ME/CFS causation.
"Of course they were focused soley on XMRV"
I disagree. The WPI's clarity is refreshing. It is the naysayers that have the closed minds.
>"Of course they were focused soley on XMRV. That's precisely what bothered Peterson, because he knew from experience, that there were and are many other factors involved. Dr. Mikovits admitted publicly within a month of the publication of the paper, that she didn't know much about ME/CFS."
I'm not sure you can fault the WPI for focusing on XMRV. They probably didn't expect to find something so consistently in all of the CFS patients. When they did, they obviously wanted to see it to its logical end. The institute is small, and it has limited resources. So they focused on the promising finding (XMRV). If they had more resources, I'm sure they would have done things in parallel, but that wasn't the case. It actually makes a lot of sense.
I also have to say, that I think after so many years of not finding a single causative agent for CFS – people seem to have resigned to looking at the "many other factors involved". But you have to be careful about that. Its way more likely that those factors will ultimately end up being secondary or downstream effects of a more simpler single cause.
Long story short, I commend the WPI for starting out by trying to tie together the many factors and look for a single unifying cause. It may or may not work out, but its a really good place to start.
>Lisa Simpson said…
My temperature (and blood pressure) have been abnormally low since the disease entered the chronic phase. I didn't experience an elevated temperature again for more than twenty years.
————————————
Yes, but the interesting part is your initial high fever at the inception of the illness.
The Lake Tahoe outbreak consistently had the opposite.
I suspect our trigger must have been different.