By K. Kimberly McCleary, President & CEO
For the second time in five days, a major paper linking CFS to a family of gammaretroviruses has been retracted. The Proceedings of the National Academy of Sciences (PNAS) released a notice of retraction to be published in its Dec. 27, 2011 issue. The notice was included in pre-publication materials circulated to the press by PNAS with a 3:00 p.m. embargo. The notice has not yet been posted on the PNAS site, but Ivan Oransky has posted most of it on his Retraction Watch blog: http://bit.ly/tSMxFu. UPDATE: The full text of the notice is now available on the PNAS site at http://bit.ly/sYDjue.
The retraction notice lists four concerns that led to the action taken and concludes with the following statement:
“…in consideration of the aggregate data from our own laboratory and that of others, it is our current view that the association of murine gamma retroviruses with CFS has not withstood the test of time or of independent verification and that this association is now tenuous. Therefore, we retract the conclusions in our article.”
Dr. Harvey Alter of the NIH
The paper retracted by Shyh-Ching Lo et al., was the second publication that documented evidence of the presence of murine leukemia virus-like viral (MLV) sequences in blood samples collected from CFS patients. All the authors of the original publication are listed on today’s retraction. The first study linking this family of viruses to CFS, from Lombardi et al., was published in Science on Oct. 8, 2009 and linked XMRV, a member of this virus family, to CFS. That paper was fully retracted by the editor-in-chief in the Dec. 23, 2011 issue of Science.
When the PNAS paper was published on Aug. 23, 2010, the authors from the Food and Drug Administration, National Institutes of Health (NIH) and Harvard Medical School, stated, “Our results clearly support the central argument by Lombardi et al. that MLV-related viruses are associated with CFS and are present in some blood donors.” Dr. Harvey Alter, a Lasker Award-honored physician credited with discoveries leading to the identification of hepatitis C virus, became a hero for his public statements in support of CFS patients and the reality of their suffering. At this spring’s NIH ME/CFS State of the Knowledge Workshop, Dr. Alter moderated presentations given by Dr. Judy Mikovits and Dr. John Coffin, speaking to support or refute the evidence linking XMRV/MLVs to CFS.
Since the August 2010 publication, several groups attempting to validate the XMRV report have conducted assays to detect a broader group of viruses, including the sequences reported by Lo et al. So far, no group has reported positive results. The retraction letter cites the study by Shin et al. published on May 4, 2011 in the Journal of Virology. This is the study led by Ila Singh, MD, PhD, whom many expected would validate the findings based on her positive results for evidence of XMRV in prostate cancer tissues.
The Lo-Alter team’s findings have come under scrutiny as possibly due to contaminants associated with common laboratory reagents. Phylogenetic analysis conducted by Katzourakis et al. and other groups suggest the sequences identified by Lo et al. in samples from CFS patients collected 15 years apart were not consistent with evolutionary change and were likely due to contamination. The work by Katzourakis is cited in the retraction notice by the authors, although they also state, “there has been no evidence of contamination using sensitive mouse mitochondrial DNA or IAP assays or in testing coded samples…”
Results from PCR testing, including that done by Dr. Lo, in the SRWG study
Results of the NIH-sponsored Blood XMRV Scientific Research Working Group (SRWG) study were published in Science on Sept. 22, 2011. Five patients whose positive results were included in the PNAS paper were part of the SRWG cohort tested by nine independent labs using 19 validated assays. Dr. Lo’s team participated, but did not find any positive results among the patient samples using tests similar to those in the PNAS paper. His assay accurately identified the spike positive controls with high accuracy under blinded conditions. The results from tests on their own patients’ samples are referenced in the retraction notice:
“While this result could be explained by viral clearance over time, it fails to support a sustained retroviral infection in human cells.”
Today’s retraction is the first public word from the Lo-Alter team in several months. Many had hoped they would have reported additional evidence by now, especially after XMRV was reported in Science to be a recombinant created in a laboratory in the early 1990s from two mouse cell lines. Hopes were kept alive by reports at conferences and online about unpublished evidence that supported the involvement of human gammatretroviuses (HGRVs) in CFS, the core of which was the Lo-Alter group’s continued engagement in the field. However, in the retraction notice the authors state,
“Our attempts, through collaborations, to demonstrate antibody in affected patients, to isolate the virus by culture, or to show integration sites in the human genome have failed to support the initial findings.”
Dr. Anthony Komaroff of Harvard Medical School
UPDATE: Dr. Anthony Komaroff of Harvard Medical School provided the patient samples to Dr. Lo, originally in the early 1990s so he could test them for Mycoplasma. That study, reported in Clinical Infectious Diseases in 1993, was negative. The remaining aliquots from 37 patients were stored (unopened) for 15 years until Dr. Lo tested them for XMRV. Eight patients were recontacted in 2010 for fresh samples, and those results were included in the PNAS paper as well.
Dr. Komaroff is widely respected as one of the most dedicated physician researchers studying CFS and caring for CFS patients over the past quarter-century. As one of the PNAS study authors, he also signed off on the retraction and offered us this additional perspective:
“If the same laboratory cannot reproduce the findings on the same patients that it had previously found positive on two different occasions, then it is necessary to retract the original publication. The reported association between XMRV and these other murine leukemia retroviruses (MLVs) and CFS just hasn’t held up. It is time to move on from that theory.
“At the same time, even in the past two years since this controversy erupted, the evidence that CFS involves abnormalities of the brain and autonomic nervous system, the immune system, and energy metabolism has grown stronger. And there is good evidence that certain infectious agents may trigger CFS (not including XMRV and MLVs). This research points the way to future research.”
Dr. Maureen Hanson of Cornell University had presented reports at conferences indicating she had data from an independent cohort study that supported the Lo-Alter findings, but at the IACFS/ME conference held in September 2011 in Ottawa, she indicated that her results may have been the result of contamination. Dr. Hanson’s work is noted by Lo et al., although they do not reflect the explanation she gave in her presentation at the Ottawa meeting; only an abstract submitted months before the conference is available online. Dr. Hanson’s work is funded by the NIH through an R21 grant; she has not yet published any results in the peer-reviewed literature.
Drs. Lo and Alter are participating in the second multi-lab NIH-sponsored study of XMRV/MLVs being coordinated by Dr. Ian Lipkin at Columbia University. Dr. Anthony Komaroff has participated in the selection of patients for the study, along with five other expert CFS physicians. Sample collection is almost complete and results are expected in the first quarter of 2012. The retraction notice refers to prospect for these study results to be “more definitive” than other studies.
We share their expectation and that held by many others that Dr. Lipkin’s study will be the most conclusive test of this hypothesis so far. It will either breathe new life into the possibility that MLV-related viruses play a role in CFS or it will be the final word that they do not. As stated many times since the May 2011 meeting of the federal CFS Advisory Committee,
“The CFIDS Association stands for rigorous research that leads to better care for CFS patients. The results of NIH-supported research into XMRV will provide answers about whether XMRV is a route to better care. We will support the outcome of those studies, whichever way they lead. We will continue to foster the engagement of scientists interested in viral hypotheses and other well-reasoned approaches to improving diagnosis and treatment.”
We recognize that there continues to be a segment of the community that holds a different view and believes that neither the Lipkin study nor any single study will be definitive and that this line of research requires persistent effort and continued funding. In light of the recent retractions of both original reports providing the only published evidence so far, it is unlikely that such funding support will be forthcoming without presentation of positive evidence through either the Lipkin study or other peer-reviewed publications.
Media coverage of today’s retraction may be light due to reduced staffing between the holidays and today’s U.S. federal holiday, making it difficult for reporters to reach the lead researchers without the assistance of agency press offices. Reports are listed below and will be updated periodically:
- “Second XMRV-CFS paper pulled,” by John Gever for MedPage Today (12/26/11)
- “Authors retract paper on detection of MLV sequences in CFS patients,” by Vincent Racaniello, PhD, at virology blog (12/26/11)
- “Another shoe drops as authors retract PNAS chronic fatigue syndrome-virus paper,” by Ivan Oransky at Retraction Watch (12/26/11)
- “Scholars retract another study linking virus to CFS,” by David Tuller for The New York Times (12/26/11)
- “2 studies on CFS retracted in week,” by Mo Hong’e at Xinhua (Beijing) (12/27/11)
- “And another,” Genome Web (free registration may be required) (12/27/11)
- “Second high-profile XMRV-related paper retracted,” by Amy Dockser Marcus for Health Blog at Wall Street Journal (12/27/11)
- “CFS: Another study pulled from journals,” by Caitlin Bronson at ThirdAge.com (12/27/11)
- “Another XMRV study retracted,” by Heidi Ledford for Nature News Blog at Nature (12/28/11)
- Message from CII director W. Ian Lipkin regarding the XMRV/MLV study of CFS/ME (12/28/11)
- “Authors pull plug on second paper supporting viral link to CFS,” by Martin Enserink for ScienceInsider at Science (12/28/11)
- “Debunked Science: Studies take heat in 2011,” by Jon Hamilton at National Public Radio (12/29/11)
- “This year in virology,” by Vincent Racaniello, PhD, at virology blog (12/29/11)
- “Year in Review,” by Ira Flatow for “Science Friday” heard on National Public Radio stations (Dec. 30, 2011) (audio file)
- “TWiV 164: Six steps forward; four steps back,” by Vincent Racaniello, PhD, Alan Dove, PhD, and Rich Condit, PhD at “This Week in Virology” (podcast) (posted Jan. 1, 2012)
- “Seven Days: Dec. 30-Jan. 5,” Nature (Jan. 4, 2012)
- “TWiV 165: The email zone,” by Vincent Racaniello, PhD, Dickson Depommier, PhD, and Rich Condit, PhD at “This Week in Virology” (podcast) (posted Jan. 8, 2012)
K. Kimberly McCleary has served as the Association’s chief staff executive since 1991.
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and in the meantime we get sicker and show more and more immune abnormalities im disgusted . No other group of ill people get treat like this . I never asked to be sick , ive done CBT it made no bloody difference infact if anything it made me worse . my bloods are always abnormal . nobody gives a shit about any of us with this illness . merry bloody christmas.
“nobody gives a **** about any of us with this illness”
That is simply not true.
First of all, what benefit do you have from bad science? XMRV was bad science and it got called out for – rightfully. XMRV does not cause ME/CFS (nor any other retrovirus).
And secondly there is research going on. Do you really Lipkin starts his own study and sets himself up to failure? I think Lipkin is best that could happen to us. Quite frankly, I have hope that research into ME/CFS will yield more results in the next few years than research into MS or other chronic diseases in the past did.
And there is some other research going on. Alan Light comes to my mind. Klimas got a institution. So did Peterson. And there are people all over the world looking to Norway.
There is no evidence of bad science or contamination in either paper that found PMRVs. There was no evidence from Mikovits, Ruscetti Lo or Alter of xenotropic polytropic hybrid viruses.
The Lipkin study, or more accurately the multi lab NIH study cannot be set up as definitive. No scientific study can be, especially when the patients entered are not selected by clinicians who use objective criteria.
Alan Lights work resembles what you would expect to see in a depressed population or those under stress and again does not use a criteria of inclusion.
And citing Cort from over at the PhoenixRising forum:
“I think over 30 studies on XMRV (none of which have found it) suggests that yes, the retrovirologists were VERY interested in this virus…..What about leading retrovirologists?…let me think – Coffin, Singh, Silverman, Miller,Levy, Lipkin…..plus the BWG The research world has been all over the XMRV….
Suggesting that the retrovirology community didn’t jump on XMRV is simply not true. They would have loved to find it in CFS – it would have meant years of work for them on only the third human retrovirus ever found…..I talked to a researcher at the conference who said with XMRV the next ten years of her life were accounted for”
But as everyone knows Mikovits, Ruscetti, Lo and Alter did not sequence any virus that is xenontropic. The other labs producing negative studies only looked for VP62/XMRV, not polytropic viruses.
In lieu of the upcoming new year and the sadness and anger that enveloped us all when the XMRV hypothesis fell to pieces, I am adamant to make a positive statement. I’d like to thank Dr. Judy Mikovits and the other researchers for AT LEAST bringing ME/CFS closer to the forefront of the public. The exposure both good and bad has been to our advantage. I regret that Dr. Mikovits believed so firmly in her data that it may have cost her her career. No other researcher has ever been that vocal that I am aware of and it was due to her personal knowledge of the desperate plight of those of us housebound/bedbound that moved her forward. What can we do? Well, if you have a good day, then have your local TV station interview you regarding this devastating illness. We need to do whatever it takes to keep this out front, increasing public awareness, and pushing for more funding. Mail research articles to physicians in your area. Write your local newspaper. The MCWPA made available an excellent Public Service Announcement about CFS/ME but WE as patients failed to see to it that it was distributed to every TV station in the USA. It’s showing again in the Augusta, Georgia area. All I did was to call the person in charge of PSA’s and had it mailed to the station. One phone call. One thank you note. And it’s been shown on 3 different network stations. I’m as sick as each of you describes. And I just had to catch those moments of feeling a bit better to accomplish this. PLEASE KEEP THE MOMENTUM GOING. PUT YOUR ANGER TO WORK! Go lie in front of the CDC or the White House or WHEREVER with a sign….eventually the news and/or TV stations will show up. THEN tell them how you REALLY feel. Billboard companies are obligated to put up PSA’s AT COST. Call them! DEMAND THAT THIS NEXT YEAR BE THE ONE THAT SEES THE BREAKTHROUGH. Marcie Myers
And there’s nobody out there thinking what the hell is wrong with us, if it’s not a retrovirus. Nobody even wonders how come we react to Rituximab, chemotherapy for cancer patients. Still they want the world to believe it’s all in our heads and why?? It’s a lot cheaper this way for governments and insurance companies. In the meantime I’ve spent the last 8 years in my house and rarely go out because I’m too bloody exhausted and sick. Researchers spend a 100 times more money per patient on asthma and a 1000 times more on AIDS, and still they wonder why there are ME/CFS patients taking their own lives?? Doctors treating both AIDS and ME say the’d pick AIDS anytime above ME if they’d have to choose?? Wake up world, if we wait too long it might be you or one of your children next!!! Merry bloody Christmas indeed.
They found no retroviruses in patients with ME/CFS. But only the few idiots out themselves now saying there are no viruses whatsoever in ME/CFS – let them! As the proverb goes: If your enemy whats to hang himself, give him rope.
And why do you think a cancer drug is proof for the “all in the heads” BS? Rituximab shows clearly an immune system involvement. As I said, only a few idiots deny that and we should let them.
Rituximab depletes B cells. MLV viruses infect B cells. When off Rituximab most patients became sick again. All of this supports the PMRV hypothesis for ME.
I want to know what “it is” – not what it is NOT! I want to know that the new International ME definition is being disseminated to all government agencies that need to know and to all doctors and teaching hospitals and medical colleges.
I want to know why after nearly 30 years of this crap, I’m now in the position of taking care of a sick husband – but who takes care of me?????????? Who even cares about my plight or anyone else in a similar situation.
Doesn’t any body care?????
As Mary Schweitzer asked recently, is anyone listening?????
More are catching the viruses and no I think they are not listening because they know the cause. They cannot bring themselves to face it.
Today is my 65th birthday. Just had a meltdown with my 80 yr old husband and 93 yr old mother. It is so difficult to constantly repeat myself since they are both hard of hearing. I’d love to be able to use a hearing aid to help a condition….but I’ve lived (?) with CFIDs since 1983 and nothing helps. I’ll have remissions and then relapses. This is not how I pictured spending the rest of my life, depressed, aching, unable to concentrate and just so sad….. Thanks for letting me get this off my chest…I needed that.
Happy Birthday, Christine! I do hope you will find some joy in this day. I have had CFS/FM since Nov. 25th, 1990, the day after my 31st birthday. I can hardly believe I still live like this – housebound mostly, bedridden still at times, and in pain, popping pills to try to help … well, you know the drill. On my “good days” I feel like I still contribute to those around me. On my “bad days” I do whatever I can to nurture myself as I would like to be nurtured. It is so frustrating to live without the understanding of others. My heart goes out to you as you take care of your husband and mother. My husband is 13 years older than me, my mother 76. I thank God that they are independent and still caring for ME. But I am fully aware that that will change one day. I try not to think about how I will handle that. YOU, my dear, could help many of us by just sharing your story, your tips for coping with this difficult situation.
Again, happy, happy birthday on this special day. 65!!! You are AWESOME! Start taking advantage of those “senior” perks wherever you can!
Blessings for a beautiful year,
Ginny
The authors of Lo et al. stand by the integrity of the data. Although Komaroff claims that:
“If the same laboratory cannot reproduce the findings on the same patients that it had previously found positive on two different occasions, then it is necessary to retract the original publication.”
He is incorrect. No lab has attempted to replicate the proven assays from Lo et al. and in the blood study the Lo team used the assays that didn’t detect a single patient as positive in Lo et al. Also papers are never retracted even if there is evidence they are wrong and in this case that has not been provided. The retraction is purely politically driven.
Komaroff final comments are also illogical as every abnormality that he claims evidence has been found in support of in the last two years can be explained by infection with polytropic MRVs.
The point about Rituximab is that it refutes those CFS-deniers who said that “it’s all in our heads.” It shows that there is a dysfunction in the B cells and is probably an autoimmune disease.
I think that what Drs. Fluge and Mella are doing is a big boost for us, given that their teams are doing research into the mechanisms of the disease and that what they are saying validates us.
Also, Drs. Komaroff, Klimas, the Lights, the U. of Liverpool and so many more researchers who are coming up with biomarkers for CFS are making me hopeful that this mystery will be unraveled.
I wonder if this all means that biomarkers will be found and validated, but the cause won’t be found and the CFS-deniers still won’t be convinced.
Cancer is treated, often curing people or bringing them into remission, yet its causes are not fully known.
Will this happen with CFS? What will it take for the government to get it and accept it as a physically caused disease, here and worldwide? What will it take to help people in Britain who are stuck with the worst CFS deniers which affects their getting medical care and disability insurance — i.e., actual help?
And even if it turns out that Rituximab is helpful, as that study of 15 CFS sufferers showed 10 were helped, who knows if all of us could take it? Some of us have terrible reactions to medications.
We want this mystery uncovered and treatments found while we are still around to reap some benefits. As we age, many of us find our symptoms worsening and our lives more limited. And we want to benefit from what’s left of our lives.
Our lives are precious, too. We want to be heard and not only validated, but helped.
So is the CAA pleased by this politically motivated retraction? Does the CAA think that with the third human retrovirus out of the way, possibly more members and donations will go back to CAA? Don’t count on it. Patients want nothing more to do with the CAA and its game playing. Dr. Enlander and his Mount Sinai center will be the new org getting those donations – not CAA or WPI.
I’m a Developmental Geneticist and Molecular Biologist with mild CFIDS. While I’m not a virologist, I can say that contamination is a shameful way to make an error. Mikovits’ research is sadly a classic case of a wealthy family hiring somebody who talked a great talk but was not qualified to be in the position in which she found herself. The resulting science was, not surprisingly, shoddy. Their money would have been better spent by giving it to the CFIDS Association.
Science works this way sometimes: false starts and two steps forward, one step back. It’s also true that even negative data are informative. Don’t lose hope. In a few years we will be able to do whole genome sequencing of CFIDS patients, perhaps revealing etiological agents.
Most of all, I’m excited about the Rituximab angle. No, this does not support a viral agent, it supports an autoimmune angle. I’d love to see this repeated with different cohorts using different diagnostic definitions.
And I wish I knew how to contact the scientific advisors for the CFIDS association. I recently came across a connection from my own work that really tied into the Rituximab story. A review by Burn et al (PMID:21515266) argues that a polymorphism in PTPN22 is strongly associated with diverse autoimmune disorders. It would certainly be worth doing associative studies with CFIDS and looking at PTPN22 to see whether this protein is altered in a sizable fraction of CFIDS patients. Does anybody know how to contact the appropriate people at the association?
Thanks, Wormboy. We’ll contact you via email about your research hypothesis.
Has anyone done research into the conection between ME/CFS and Lyme disease as a great many people diagnosed with ME/CFS later test positive for Lyme. Is the connection contaminated vaccinations and/or GERM warfare testing?
Hi Jacqui,
There has been a bit of research on the overlap between Lyme disease and CFS, without much resolution. The latest study using cutting edge proteomics to look for protein signatures in pooled CFS samples and pooled samples of post-treatment Lyme disease (chronic Lyme) patients showed distinct differences. Here’s our analysis of the study published in Feb. 2011 in PLoS ONE: http://www.cfids.org/research/proteome-analysis.pdf
I have had CFS/Fibromyalgia since 1988. Recently I have a new symptom and wonder if anyone else has it. My head (brain is very hot) in spells. Sometimes when I lie down, the heat evaporates.
Having said that I do not have a fever. Can anyone give me an answer>Thank you.
Hello Madeleine
I have had ME/CFS since Jan 1991 (I live in Cape Town, South Africa).
Luckily the doctor who diagnosed me, knew me well personally & knew that what was happening to me wasn’t “in my head”. For me it started with a really bad flu in Jan’91; then progressed to the Epstein Barr virus which did not heal within the expected 6 months. I became very weak & by lunch time daily could not hold my head up straight, as my neck was too weak to hold up my head. I then had to take time off work & have a short break.
The “hot spots” in the brain that I experience; I have been experiencing since the beginning. They come & go. I notice that when I weaken or am stressed & my body may be fighting another bug I picked up – that’s when it starts. It does ease with rest though. I asked neurologists (I’ve seen 3 over the years) & none of them have an answer to that. The one mentioned that he did notice some murkiness in the liquid around my brain (spots of cloudiness).
But then he said he sees it at times, but does not know why that happens!
I gave up on believing in western medicine only. You have to find what works for you.
At one stage, I lost feeling in the left side of my body & the neurologist was convinced that it was MS. I went through all the tests required. He was pleased it wasn’t MS; but apologised for not knowing what the problem was & recommended that I continue seeing the doctor I am currently seeing (a G.P. & Homeopath – who uses the SCIO machine (electromagnetic energy) to do tests & treatment on me quarterly. We have managed to keep my white blood cell count from increasing too much & the machine is able to pick up issues I may miss. (My major problems are the immune system; blood & bone marrow).
It certainly is able to confirm what I am feeling (without me having to say anything first). It was with the use of that machine that my doctor could find out the reason for the weakening on the left side of my body; it was because of a seriously low level of Boron. As soon as I got that up & have been taking CAL/MAG with Boron & Vit D daily; it improved. Over the years I have had to increase my levels of Vit’s (especially B’s; iron; C; EFA’s; Calcium/Mag; minerals; cell food [for Oxygen]) considerably.
When I dont’ take them the decline in my level of coping is unbelievable. The fatique makes breathing unbearable.
Luckily, I do not suffer with depression – I was always a happy, energetic & busy person before this illness hit. I do however get angry at the arrogance & ignorance of so many (especially in the medical field). I am hoping a cure is found soon. My life has slowed down drastically since this illness started. Everything changed!
I am fortunate that I am able to work from home (due to my weakened immune system). I connect to my desktop at the office (for the past 3 years) & manage to do my full day’s work from home. Prior to that I dragged myself to work everyday. I am single & have chosen to be so, as I cannot manage more pressures /expectations & disappointments/ from anyone else. I use up all my energy to look after myself. I can’t look after another. I have had far too many strange symptoms over the years (besides the fatigue, weakness & pain). It is difficult for someone who does not feel what we feel to really understand.
Best of luck to you Madeleine.
Everything of the best to you my dear.
Auriel
Dear Auriel,
Thank you so much for your reply that was both interesting and helpful. Sometimes one feels like she is the only one suffering certain symptoms and so it is good to know that other can relate to what one is feeling. Although I have been very debilitated, I have not suffered some of your symptoms and I am glad that you have been able to get some relief with the Boron. Up til now I have not been depressed either, but the ‘hot brain spells’ is so bad at times, it is difficult to talk and be in others’ company. So I usually excuse myself, although I needed to do this before, these spells are more
serious. I will go to my primary doctor who is very nice, but I fear that she will not be able to help me with this problem.
But I am very grateful to you for sharing with me. I am glad that you are able to continue working at home at your own pace.
God bless you, Auriel,
with gratitude, Madeleine
The whole “thing” started in the early 1980′s. A fantastic book, Osler’s Web, Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic, by Hilary Johnson, chronicles the roots of research starting with Dr. Dan Peterson and Dr. Paul Cheney. Dr. Komaroff along with Elaine Defrites started seriously looking at infectious diseases as the root cause shortly thereafter. In May 1997 I was struck by a sudden, severe onset of a disease that I am sure was an infectious disease agent. About six months before my 14-year-old daughter was struck down in the same way. We have not recovered. I am convinced we have a post infectious syndrome. Some infectious disease doctors who believe)that I have read think it infects then becomes resident. Some rheumatologists (who believe) think it infects then leaves a damaged brain. At one time in Hilary Johnson’s research, she reports a researcher who calls this infectious agent “HIV negative AIDS”-very similar symptoms but it doesn’t kill. Seems right to me. I am grateful Dr. Komaroff and others as well are looking for a disease agent. I am heartened to read, “… the evidence that CFS involves abnormalities of the brain and autonomic nervous system, the immune system, and energy metabolism has grown stronger.” Yes!
hi ,i’m a long time sufferer of cfs or cifids or what ever they are useing the name these days! i just spent the last hour and a half e-mailing a Dr Judy McClary who deals with and has i guess helped alot of cfs since i’m not going to elaborate all the trgedies i have went thru in my life, which i deifenntly feel brought on my cfs, i never had a Dr confirm my cfs nor did i need one to, every symptom that there had ever been related to cfs, i had, every single one of them, i had been tested for all std’s ,since my exhusband and i divorced lymes disease which i swore up and down that i had, lupus hep c hiv all were negative!,but when i finally after years of living with this cfs i went on line and there it was like a neon light, every known symptom that is related with cfs i had, now i am without any ins no Dr diagnoses for cfs and dealing with SSD which i know that they won’t give it to me when even a dr can’t or won’t recognize it{cfs}all i do is pray for an answer, and pray that my concentration and pain will not kill me……… any word of encouragement would be appreciated.Thanx for letting me share, oh also, this xmrv virus that they say we have it makes me feel dirty or something.
I agree with Wormboy. I was getting my masters degree when I was hit with CFS. One thingies learned in my Research Studies course (needed to complete my masters research paper) is that even negative results are results. You find out that your hypothesis was wrong. That’s an answer. Also I learned that all research must be repeatable. If it’s not repeatable, you can’t make the connection. You can control as many variables as you can, but there will always be some factor that one didn’t account for. It’s normal. That’s why researchers spend time & money duplicating tests. It must be accurate. So while these studies were retracted, that doesn’t mean nothing was learned. On the contrary. Researchers learned that those particular viruses don’t appear to be a root factor and therefore research dollars would be better spent elsewhere. Xoxoxo
I HAD ”UNDULANT FEVER” AS A YOUNG CHILD. IT IS VERY RARE BUT I READ IT DOES RECUR & all my life I got sick with flus, terrible coughs & always very high temperatures, up to 104 degrees. took longer to recover & as an adult I would be terribly weak & shaky & unable to work. FINALLY IN 2002, I GOT A BAD FLU & DID NOT RECOVER & FINALLY A SPECIALIST ACKNOWLEDGED I HAD CFS & SO ON IT GOES! NOT ABLE TO HAVE A NORMAL LIFE, NOONE UNDERSTANDING OE BELIEVING HOW SICK YOU REALLY ARE–YOU ALL KNOW THE STORY ONLY TOO WELL.JUST SO VERY TIRED OF IT ALL.
While this article gives an excellent overview of recent events, the statement that the Katzourakis et al. study concluded that the detected sequences from the Lo et al. study “were likely due to contamination of the samples with 22RV1″ is clearly wrong. You may want to re-read the Katzourakis et al. conclusions, but to give a short explanation:
The 22Rv1 cell line produces XMRV and not the (fragments of) endogenous murine retroviruses that Lo et al. were detecting. Moreover, with contamination from 22Rv1 the authors’ comments about not finding mouse DNA contamination would be nonsensical because, in that case, one would expect mouse contamination tests to return negative, as the human cell line 22Rv1 is negative for mouse DNA (check Figure 2D of Paprotka et al. for instance).
In short, there are basically two ways to contaminate samples in this context:
1. 22Rv1/VP62 plasmid. In this case, you will find bona fide XMRV (e.g. Lombardi et al.)
2. Mouse DNA contamination, for instance from reagents. In this case, you will not find XMRV but related sequences (although partial sequences may be identical to XMRV). Examples of this are Lo et al. and Shin et al. (that found a ~5% positivity rate at some point that was the result of contamination)
Thanks, RRM. I’ve revised the text and appreciate your further explanation here.
Im 47 years old, ive been affected by this illness since I was 11 months old. My mother was always over protective because I was very ill as a child. The immune system problems and neurological issues were evident then.
I did make it through school, actually became an RN, worked 10 years until I became too ill to work. I didnt get a diagnosis for my mystery illness until I was 29. Ive been disabled as per Soc Sec since I was 33 (in reality sonner than that).
My life consists of being homebound, in bed, on a computer, with my bags of prescription drugs and supplements I take to get some type of relief.
I only started reading the research info the last couple of years. The one thing that has caught my attention is the Rituximab. The Rituximab studies are the first thing that validates our illness as far as im concerned as far as the people who have thought/think this was all in our heads. Im waiting for Rituximab.
Im glad the Rituximab studies are being done in Norway, because if it came up over here, it wouldve been swept under the rug and we would’ve never even found out about it.
Christine, I know exactly how you feel. I am going on 68 and have had ME/CFS that manifested as severe fatigue at a definitely clinical level in January 1986. However, I had been tiring easily since a bad case of “flu” in 1978 and a neck injury earlier that year. I have gradually gotten worse since then and by 2007 was able to do very little but see 3 or 4 patients a day (I am a psychologist and fortunately able to work out of my home) and selected mild activities. Then in 2009 they insisted against my own judgment in doing radiation for a microscopic DCIS. I did not recover from that fatigue and now collapse on the couch unable to do anything else except see those patients (I have to financially). I feel I need to stop but somehow therapy must use mainly parts of the brain that aren’t as involved as I still do good work except for remembering what I should from previous sessions. My patients are very understanding.
My husband was in the hospital for severe heart and periferal arterial disease 4 times this year. Christmas Eve he fell and had to have a big gash stapled up on his head. He has been delirious and hostile since then. I am frightened because he already has very early dementia (probably from TIAa) and we don’t have long term care insurance. But in reality I don’t think he.ll last very much longer. And he’s only 75.
What really frightens me is my own brain fog. It has also gotten much worse in the last few years. The question that is always in my mind is what is it really? Is it brain fog or is it dementia? And what am I to do with the rest of my life to make it worthwhile? I can’t keep seeing patients and I thought I would never retire. I can no longer write talks and articles – something I had expected to do much more of after retirement. I feel depresseed and useless. (Perhaps they should add a diagnosis in the DMS V of existential depression.)
Does anyone know how I can figure out if this is CFS or dementia? Anyway, sorry for the long reply but I really appreciate the chance to say all this. And, hopefully get some help to understand what is going on with my brain.
What fir