In three words I can sum up everything I’ve learned about life. It goes on. ~ Robert Frost
The week before I left to come to Hawaii was a difficult one for me. I took a series of emotional hits in quick succession, then had to leave home to take care of patients here, alone with no support. I arrived feeling sicker than I had in many months. My first patient was a well known advocate in our community, and I will always remember that she was there when I got off the plane, as well as her caring in the first difficult days. She knows who she is, a very special woman.
Childbirth was the initial trigger for my illness, and a concussion once, but sustained emotional stress was involved in my worst declines. So I was a little concerned, as was my family. I did dip a little, predictably, but I’ve been able to function throughout and am feeling better again. More resilient than expected. Able to weather some difficult stuff without going down, a degree of stability necessary for the patients who are choosing to put their trust in me. At least they can be sure they are sitting with a doctor who cherishes every encounter, whatever the future may hold. I know what it’s like to be unable to work. Actually, I know what it’s like to be unable to roll over. I get a little frustrated sometimes at having to pace myself pretty extremely when I’m at risk, like now, but if I stick to very restricted hours and activities, particularly when I don’t have help, I can do the things I need to get done in the physical world. The medicine is the easy part. A reflex. So far caring for my own patients is sustaining me. As always, I work diligently to stay focused on what I can do, rather than what I can’t, and I don’t allow myself to sweat the small stuff.
A few people wrote that they were disturbed that I said I didn’t expect a cure. I should have said in my lifetime or in the foreseeable future. In the same way that HIV patients are incurable, yet attain functional cures for long periods of time with treatment, I expect that a similar degree of successful management of the disease will be possible for ME/CFS patients. The politics and regulatory issues are a nightmare, as I’ve learned firsthand through my association with the WPI. Coming here to see patients one-on-one feels like respite compared to that. The hardest thing for me to absorb is that a giant hand came down and hit the pause button on the science, and therefore the search for appropriate specific treatments, until Lipkin opens the envelope and declares a winner. We have the technology! It’s just money and priorities. If everybody would wake up and recognize it for the public health disaster that it is, it would take a couple of years to get a handle on what’s there from an infectious disease standpoint, a couple more to figure out the basic pathophysiology and a couple more for compassionate use treatments to be available. But it doesn’t look like that is what is going to happen. The psychiatrists will have their way for a while longer. We will have a new diagnosis, CSSD, Complex Somatic Symptom Disorder. New name for Munchausen’s.
The best news is that my Munchausen’s by proxy is in remission:). Ali is doing very well again, with large amounts of supplemental oxygen. We put the concentrator in the middle of the house with a long hose allowing her to be wherever she wants to be. She has been using it at 10 L/min for about an hour a day, more if she has breakthrough symptoms. She has needed no prompting, but wants to do it, because it makes her feel better. She has also had a few Meyer’s Cocktail plus glutathione infusions that seemed helpful, supportive, but she hasn’t had any for 4 weeks now and continues to improve with oxygen being the only new treatment. Her MCS symptoms, or hyperosmia, have almost resolved. She was able to go to a party for a few hours at a neighbor’s house last week where she was exposed to perfumes without problems. She hasn’t tried the chamber yet, but I have asked her to figure out if pressure adds anything for her, since she is much more sensitive than I am. As for me, I do think I benefit from the effect of coming to sea level from altitude (my house in Santa Fe is at 7000 ft). It most likely would be short-lived if I stayed, but should happen each time I come here, planning to use oxygen when I return to elevation. The travel really doesn’t bother me much anymore. I use the wheel chair service and am grateful for it. Supplemental oxygen during flight would protect against adverse effects of hypobaria and hypoxemia, but it is very expensive and a hassle. If I just pretend I’m home on the sofa, play with my iPhone and let them transport my body, the travel doesn’t seem to be a problem for me.
And lest anyone think that mouse retroviruses are not part of the picture whilst we are waiting for Dr. Lipkin, reminiscent of Waiting for Godot:), take a look at this important paper: Frequent detection of infectious xenotropic murine leukemia virus (XMLV) in human cultures established from mouse xenografts. Zhang/Gazdar. It’s reads like science fiction if one considers the consequences of this wee oversight, realizing that mouse xenografts have been used since at least the 40’s, though I still think the early yellow fever vaccine work was probably the beginning of human assistance in the natural process. Or it may have begun even further back, with the selective breeding of mice in the early 20th century, mice that were unable to survive in the wild, producing infectious viruses to which they are not susceptible due to receptor mutations. The use of animals, including mice, for the production of vaccines started in the early 30’s or before. Yellow fever was attenuated in mice and injected into monkeys and humans. See previous blogs here, here and here. Also there must have been lots of experiments at the time that didn’t make it into print. The records from the Rockefeller Institute would probably shed a lot of light. This paper was published in 1932 and the first documented outbreak of Epidemic Neuromyasthenia at LA County Hospital was in 1934: Vaccination Against Yellow Fever With Immune Serum And Virus Fixed For Mice. Sawyer/Lloyd. J Exp Med. 1932 May 31;55(6):945-69. Infectious mouse retroviruses probably infected humans before that, but at very low levels, since the sick mice died like they were supposed to.
Hats off to Zhang et al for their vital work, and for calling a spade a spade. Finally someone stating the obvious. 22Rv1 doesn’t explain away all the ruckus, nor was it the incredibly rare event postulated by Paprotka et al. Like XMRV, it is a signpost to a much greater problem. It is the patients that are contaminated, and not by just one virus. Many infectious retroviruses. Just because way back when, Coffin, Stoye, Heneine and the gang all said it couldn’t happen, doesn’t mean that it didn’t. Some choice comments from the Zhang paper:
ERVs represent remnants of ancestral germline infection by exogenous retrovirues and after integration into the genome are transmitted vertically as proviruses. Murine leukemia viruses (MLV) as ERV provirus forms are present at about 60 copies per mouse genome from which up to 15 copies are related to infectious xenotropic murine leukemia viruses (XMLV)… Thus, active mouse ERV provirus present in common inbred mouse tissues can be the origin of XMLV or recombinant polytropic MLVs which are infectious to human tissues implanted in laboratory mice.
Earlier studies have documented that XMLV type-C retrovirus particles were indentified in human xenograft cultures derived after xenografting in immune-compromised mice… NCI-N417 SCLC cell line was established from a mouse xenograft by the Gazdar lab at the National Cancer Institute (NCI) in the early 1980s and this cell line was subse- quently found to contain XMLV a few years later.
Reports of XMLV strains being present in human xenograft cultures appeared in the 1970s…
Our results indicate that human tumor cells frequently become infected with MLV virus after xenografting and subsequent culture. We have observed that mouse stromal cells may persist in culture for lengthy periods. Mouse stromal cells, while they contain abundant provirus forms of MLV, including ecotropic, polytropic and xenotropic strains, seldom spontaneously release large amounts of infectious virus (authors’ unpublished findings). Virus infection of xenografted cells may require activation of XMLV virus by chemical or immunological induction in mouse and by prolonged mouse and human cell contact. Viral transfer may occur in the mouse host or during subsequent xenograft culture. Our findings of infectivity of XMLV-positive supernatant fluids demonstrated that XMLV can readily infect other human cultures without presence of mouse cells or other aiding factors, indicating that these viruses are highly infectious.
In conclusion, our studies demonstrated that several MLV strains were present in over one fourth of xenograft cell lines. Infected cell lines were identified in most laboratories working with or establishing xenograft cultures, indicating that such contamination was widespread. Infected cultures usually release large numbers of infectious virions, and intra-laboratory spread of MLV virus to other cell lines maintained in the same facilities may occur, confirming the highly infectious nature of MLV virus. Retroviruses have been associated with multiple diseases including solid and hematologic malignancies, AIDS as well as with non-malignant diseases. The high susceptibility of human cells to infection with XMLV, the high levels of reverse tran- scriptase activity present in culture supernatant fluids and the demonstrated infectivity of the shed virions suggest that such viruses may present potential biohazards to laboratory person- nel involved in cell culture facilities or to those handling human xenografts. In addition, the effects of the integrated provirus or the released virions on the biology of infected tumor cells are unknown. Provirus integration into the genome is not random, and occurs preferentially at transcription start sites, CpG islands, DNase-hypersensitive sites and gene-dense regions, suggesting that provirus integration may influence transcription in the host cell. Thus laboratories handling or culturing human xenografts should monitor for monitoring personnel for viral antigens or antibodies to them.
>Wow is right and it just gets better, today we have news of an international M.E. definition to distinguish the neuro-immune disease named M.E. in 1956, from the intentionally psychiatrically biased CFS definitions. An M.E. definition that cuts the weasels out! No more ME/CFS or CFS/ME, we can finally reclaim our true history and get rid of CFS psychiatry!
We have retroviral causation being proven by the method of does the treatment move the disease, and yes it does! Here too the history proves the retroviral case when in the mid 80s Cheney & Peterson shared brain scans of what were undoubtably M.E. patients with a neuroradiologist, who compared them to AIDS patients. Yes Paula and Leela, it all fits together with the AIDS comparison and MLVs blocking methylation, plus the timing of using mice for vaccine creation just prior to the first outbreak.
Dear Dr Jamie, thank you thank you for sharing so much of yourself and your journey on ARVs with us. Its been a scary ride since October 2009, and you kept our hopes up when the usual suspects threw everything they could at undermining the research and the patients who wanted to try ARVs. I can't wait to see the new M.E. definition and I can't wait to read your next blog.
Life goes on – I think we can all believe in that now!
>http://niceguidelines.files.wordpress.com/2011/07/myalgic-encephalomyelitis-international-consensus-criteria.pdf
>@ Anon July 21, 11:26 PM
Re: "the timing of using mice for vaccine creation just prior to the first outbreak."
Which outbreak are you referring to? Incline Village? I thought they started using mice long before then.
>From this day forward, I will NEVER, EVER refer to our illness by you-know-what again (except to kindly but firmly educate someone who, in their ignorance, is using that OTHER name ever so inappropriately.)
With gratitude to everyone who participated in the ME International Consensus Criteria. Our community applauds you!
>Of course Erik is right about toxic mold. Certainly avoiding it will help. Is there a place you can move where you will not be exposed? No, let me repeat, I live in a desert yet many buildings here in Las Vegas are contaminated. So are books as found in libraries. Casinos are worse because cigarette smoke with carry mold molecules attached to the smoke. I learned this from Erik who is a brilliant, good guy. Erik goes to great trouble to avoid mold exposure. All of us with cfs/me need to to that. But we will not be cured by doing that. Hopefully we can eventually get tested and treated for these newly discovered retroviruses. That might reduce our reaction to mold toxins. Or it might not.
>Yes, Erik is right about toxic mold….and yes, he is a brilliant, good guy. Of course there are places in the desert that have mold and mold avoidance is not easy, which is precisely why it needs investigated. Considering that there are patients who are XMRV positive that have demonstrated that strict mold avoidance can bring on a remission is a clue that demands investigation. Quieting a retrovirus by avoiding specific biotoxins is significant. I hope I didn't offend anyone, but for people who don't want to talk about mold, it certainly seems to keep being brought up. No need for anyone to work themselves into a tizzy over my silly mold talk. However, you might want to think twice about silencing people who have demonstrated success with regaining their health by doing extreme avoidance. It just might prove to be a crucial clue.
Jeri McClure Kurre
>@Anon July 22, 2011 2:21 PM
Your question is proof of the damage caused by the invention of CFS in 1988, in order to cover up epidemics of M.E. that had been studied since the first recorded outbreak in 1934, which affected medical staff at a Los Angeles Hospital. The CDC invented CFS and its non-specific criteria in 1988 to coverup the increase in M.E. outbreaks during the AIDS crisis, a tragedy for all of us.
Unfortunately the so-called patient organizations also failed the patients. CAA worked for the CDC branding the CFS label, and PANDORA has an agenda that does not include telling patients the facts about M.E. Please support the International M.E. Association, the only patient organization that supports the WPI, without which we would still be in the dark ages of CFS psychiatry.
Research Publications on ME Epidemics 1934-1980
http://www.meresearch.org.uk/information/publications/ResearchPublications1934-1980.pdf
What is ME? What is CFS? Information for Clinicians and Lawyers
History of ME, and how ME was displaced by CFS
http://www.meactionuk.org.uk/What_Is_ME_What_Is_CFS.htm
Note: Prof Hooper acknowledges that chemicals can also injure the RNaseL anti-viral pathway.
Of Mice and Men: On the Origin of XMRV
http://www.frontiersin.org/virology/10.3389/fmicb.2010.00147/full
Vaccines, Viruses, and Contamination
One of the most widely distributed biological products that frequently involved mice or mouse tissue, at least up to recent years, are vaccines, especially vaccines against viruses. Some, for instance vaccines against rabies virus (Plotkin and Wiktor, 1978), yellow fever (YF) virus (Frierson, 2010), and Japanese encephalitis (JE) virus (Inactivated Japanese Encephalitis Virus Vaccine, 1993), consisted of viruses that were cultured on mouse brains. Such vaccines were in use from 1931 (YF vaccine) until now (JE vaccine, licensed in Japan since 1954).
>@Anon July 22, 2011 2:21 PM
Your question is proof of the damage caused by the invention of CFS in 1988, in order to cover up epidemics of M.E. that had been studied since the first recorded outbreak in 1934, which affected medical staff at a Los Angeles Hospital. The CDC invented CFS and its non-specific criteria in 1988 to coverup the increase in M.E. outbreaks during the AIDS crisis, a tragedy for all of us.
Unfortunately the so-called patient organizations only added to that tragedy. The CAA worked for the CDC branding the CFS label, and PANDORA has an agenda that does not include telling patients the facts about M.E. We do have the International M.E. Association which supports the Whittemore Peterson Institute – without which we would still be in the dark ages of CFS psychiatry.
Research Publications on ME Epidemics 1934-1980
http://www.meresearch.org.uk/information/publications/ResearchPublications1934-1980.pdf
What is ME? What is CFS? Information for Clinicians and Lawyers
History of ME, and how ME was displaced by CFS
http://www.meactionuk.org.uk/What_Is_ME_What_Is_CFS.htm
Note: Prof Hooper mentions that chemicals can also injure the RNaseL anti-viral pathway, a point the moldies might do well to remember – in other words any environmental toxin can adversely affect us, doh!
Of Mice and Men: On the Origin of XMRV
http://www.frontiersin.org/virology/10.3389/fmicb.2010.00147/full
Vaccines, Viruses, and Contamination
One of the most widely distributed biological products that frequently involved mice or mouse tissue, at least up to recent years, are vaccines, especially vaccines against viruses. Some, for instance vaccines against rabies virus (Plotkin and Wiktor, 1978), yellow fever (YF) virus (Frierson, 2010), and Japanese encephalitis (JE) virus (inactivated Japanese Encephalitis Virus Vaccine, 1993), consisted of viruses that were cultured on mouse brains. Such vaccines were in use from **1931** (YF vaccine) until now (JE vaccine, licensed in Japan since 1954).
>The good news is that Judy Mikovits was on the ME consensus panel. The US groups have been ineffective to absolutely detrimental. Pandora/MCWPA took up the ME/CFS drivel but these phony ME groups are worse and more insidious. This IMEA is NOT an ME group and certainly does not tell the facts about ME. IMEA is still all about CFS and ME/CFS, supposedly meeting with CDC "CFS" officials, mixing terminology all over the place. We need to start over. It is unfortunate that WPI has to take on these things as well, but we have just sunk deeper and deeper into the morass.
>@ July 23, 2011 6:04 AM
Very helpful; thank you for your thoughtful response.
>@ Anonymous July 23, 2011,
Mold can also injure the RNase L anti-viral pathway.
From Dr. Shoemaker's book "Mold Warriors": "The source of activation of the endopeptidase that cleaves RNase L is increased response of a cytokine, alpha interferon.' …."alpha interferon is increased like crazy in mold patients compared to controls. Can we say that mold exposure doesn't change RNase L like you have reported in putative viral CFS patients?"…"Dr. DeMeirleir chimed in, 'We know that cytokine increases are important activators of the subsequent increased activity of these enzymes. Given your data, we need to look again at our data in which we clearly see changes in innate immune responses in CFS. Mold could be the common denominator."
Jeri McClure Kurre
>"Jeri McClure Kurre" = Eric "Mold Warrior"
>http://betterhealthguy.com/joomla/blog/242-a-deep-look-beyond-lyme
>Paula — what part of hawaii did you visit??
>@ anonymous July 23, 2011 7:54 AM , Well then get it done. What are you waiting for since you have it all figured out go ahead and start over. Show everyone how it's done since you seem to think you know. What's stopping you?
>Anonymous 7/24 9:44 PM- we did get it done! Congrats to the ME advocates who did not back down, despite the censorship and attacks, and fall into the ME/CFS trap. This is a major accomplishment!
>So have you checked to see if the CDC and NIH will be adopting this criteria or have you gotten that far? I think it was the doctor's that wrote this up 2 years ago that got it done.
>And have you noticed the people that submitted this for publication promote this on their website: Documents for both ME/CFS and FM which are known as the Canadian Definitions.
Oh no there's that ME/CFS thing.
>No anonymous, an updated definition was important, and ME advocates were not compromising. There was a good deal of pressure and would assume that it had something to do with it. Whatever anything says on any site, this is an actual ME definition – no ME/CFS.
>Well no one seems to be forthcoming on how or who got this draft published. I agree we needed an updated definition. We also need to know the details. Some are speculating this may have something to do with generation of votes and funds, and the diversion of votes that are going to WPI through the Vivent contest. I think we deserve answers. I don't think patients have forgotten what happened with Chase and the CAA. I saw this definition over a year ago and am wondering why it is resurfacing now and is not a finalized copy. They are also saying that a finalized copy is not coming for a few months. So exactly what is going on here? Many are wondering the same thing. If ME advocates were part of this they seem to be just as puzzled as anyone. I'm not questioning any ME advocates position as those are very clear. I'm questioning the appearance of this draft paper now and the motivation behind it.
>@ Anon July 25 8:44 PM
Do you actually believe that the CDC/NIH would ever adopt the new criteria given that they've never bought into the Canadian Census Criteria?
What is so remarkable is that this group of clinicians/researchers selflessly got together and achieved 100% concensus (rarely heard of in any group!) to provide patients and advocates a diagnostic tool to take to their clueless (through no fault of their own) physicians.
Words cannot express the gratitude!
>@rendere, No I don't believe the CDC/NIH will adopt the criteria that's why I was asking. If they won't how will we convince doctors? This was also written up 2 years ago and being published in draft now? Also an advocacy org seems to be using this to try and take credit to generate votes and donations for themselves. I doubt any of the authors were agreeable to that. The authors are the only ones that can take credit. Do they know what has been done here and why?
>@ Anon July 26 8:40 PM
These days, government endorsement takes making big money for corporations. Clearly, ME doesn't fill the bill especially if it implicates vaccines.
The authors of the International ME Concensus Criteria just might have figured that doctors might be positively influenced by their sheer numbers together with their credentials, years of experience, reaching 100% concensus, minimal conflict of interst, and the fact that everyone volunteered for the project.
>I cannot express my profound gratitude to the contributors to the International Consensus Criteria – not only for their vital work, but also for their determination and resolve to do what is right, and against such enormous pressure to do otherwise. The respect they show people with ME is astounding, and I feel deeply fortified by it. I will never forget what good they've done by doing this, and I thank them daily and individually in my mind. They really are good people, as well as being great scientists.
Belle
>Hurray for the International Consensus Criteria!!
Hurray for 'anonymous 23rd July 4.34am' – vaccination contamination theory!
I am XMRV+ by serology. I have antibodies in my blood to a murine gamma retrovirus. My result IS NOT due to contamination – MY ILLNESS IS DUE TO CONTAMINATION – DUH!! CONTAMINATED VACCINES.
No more denials – we know the truth, we speak the truth, we are the truth – we are the PROOF!!
Thanks Jamie for your blog, you have brought some wonderful minds together (despite the brain fog!!)
>I'm not doubting vaccines could cause some problems, however, I am doubtful that a vaccine caused me to be XMRV+ by serology. You see, I don't believe I had had a vaccination at the time I began to have symptoms.
Maybe more than one cause?
>Do you mean that you had NEVER in your life had any vaccination before you got ME? My trigger wasn't vaccination either, it was a virus – possibly EBV. However, I believe that maybe I contracted XMRV through a contaminated vaccine at some point throughout my life and that perhaps it lay dormant until another virus stimulated my immune system sufficiently for the XMRV to become activitated. This is my take on it.
My last vaccination was a flu jab in 1997 and I became ill in 2007 – after a viral infection. Some people blame a specific vaccination for their trigger and that may very well be the case but for me the trigger was viral but I believe the initial pathway for XMRV into my body was perhaps vaccination or the fact that XMRV could perhaps be transmitted through through upper respiratory tract secretions – which no one has yet disproved and which would explain the cluster outbreaks that we have seen over the years.
>@ above…
I'm not 100% sure I had not had a vaccination as my early medical records are not available, and my parents have passed away. I have been trying to find out just when the schools in my state began to require certain vaccinations, but have not been successful so far. From what I remember, however, the it was not until later on… a few years after I began having some problems.
>I think I've probably had the HGRV my whole life and most likely my whole family has it too. I'm positive by sero and culture. Different stressors, vaccines included can start the replication process when you already carry the retrovirus.
>Thank you so much for this blog! It's both depressing and heartening that a humble blogger has shed more light on my CFS more than any doctor…
>Thank you Dr. Jones for your hard work, sharing your experiences and keeping us updated on latest research. Your perspective as a physician and patient is invaluable. I also appreciate hearing everyone's viewpoint including Lisa's. We are all in this together to help all of us on this long, difficult, confusing journey. I've had this crap for at least 20 years if not longer.
I welcome the new definition of ME, maybe more doctors will get on board and not think of us as crazies. Thank you to all those hard working doctor's who made this definition possible. It may not be a perfect definition, but it is a start of recognizing this serious, complex illness.
I am truly sorry that WPI is not taking your direction Jamie, that is a huge mistake. They seem under the gun from all this negative results, I'm sure they will come crawling back. Keep up the good fight and take care of yourself in the meantime!! We need you!
Nancy Rouch