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.
>Was so happy to be there to help launch your new practice. How very lucky I feel to get to know you better as a person and a doctor. Life changing event for me. Look forward to many years ahead. Brava!!
Heidi Bauer
>I looked up some information about Kapaau, Hawaii.
The town is on the big island of Hawaii, which (according to Wikipedia) is a favorite of astronomers because it has little light pollution. Generally when there is not light pollution, there is little toxic pollution either.
The wind direction on Hawaii generally is from the northeast. Mapquest shows Kapaau being located all the way at the northeast tip of the island, putting it in a good position to receive unpolluted winds from sea on a regular basis.
At least once a week recently, I have been hearing from additional CFS patients who have gone into spontaneous remission while in Hawaii, and then relapsed when returning home. Almost all of them live at sea level. Here is a comment I got yesterday from someone who lives in the Chicago area, for instance.
"I always feel almost normal if I am in the Hawaiian Islands. I have been to the islands 3 times and saw a lot of improvement each time. I am trying to save some money to get to the islands in the fall."
Hawaii has been better for this person than the Caribbean, Tucson or a variety of other places at sea level.
Concluding that the "Hawaii effect" described is due to oxygen levels rather than to clean air seems to me premature. A comparison of Hawaii vs. other places at sea level would be needed in order to draw any conclusions whatsoever, even for individual people experiencing the effect. I suggest a visit to Berkeley/Richmond, as the comparison point.
It will be interesting to hear how CFS patients traveling to Kapaau from places at sea level (and especially from places like the Bay Area or Lake Tahoe) do there.
I would suggest that these folks consider leaving all their (possibly contaminated) belongings at home, and ordering a few new clothes to wear while in Hawaii. LL Bean clothes always have worked well for me, for example.
It's hard to imagine that contaminated possessions alone can be enough to keep people wholly sick, but for people living in particularly problematic places or residences, it can occur.
Best,
Lisa Petrison
lisapetrison at yahoo
>Lisa,
I brought all my contaminated stuff with me, including boxes of equipment from my old office in Great Barrington. All my same clothes, etc.
I picked North Kohala because there is no VOG here. Volcanic emissions are a significant problem on the Big Island for sensitive people. Also because it reminds me of the Hawaii I loved 30 years ago, harder to find now on the other islands which have direct flights from the mainland (Maui and Oahu).
I was a hyperbaricist. I spent 5 years studying the effects of hyperbaria and hypoxemia. I know a hyperbaric treatment when I feel one:). But it is true, I might not feel as well in Berkeley/Richmond as I do on my lanai here in Kapa'au, for many reasons:). It is a complex problem as to why we feel what we do at a given time.
Jamie
>Thank you Jamie and all of the patients and doctors standing up and fighting back. I've been on ARV's for 18 months and it's the healthiest I've been in 5 years. That's only because of the research done by WPI that I have my life back. For the first time in a long time I can see the light at the end of the tunnel.
>The sad truth is some of us don't have years to wait while the scientific and government entities figure out the disaster they have caused. More and more patients are taking matters into their own hands with the help from some compassionate people. Or doing what they've always done with this illness by acting as their own physicians. And they are getting better. This will be the proof they have been trying to stop. It's amazing what these pioneers harboring this newly found retrovirus can accomplish. We will not be silenced again. Come hell or high water we will make ourselves well enough to show the truth of what's been done to us and our families. Thank you Jamie for being one of those pioneers.
>Jamie,
I dislike trying to make guesses about people's living environments at a distance. Nonetheless, here are some comments.
You state that your husband has thoroughly checked for mold in your home and has found nothing. He seems to know what he's doing, and I thus have every reason to believe that your house indeed does not have a mold problem. The fact that you and Ali feel better when you remain at home than when you go out lends further weight.
Erik suggests that it takes about five years for contaminated belongings to wholly die down. Thus, even if your possessions were contaminated at a previous residence, they might not present any sort of problem for you or anyone else now.
(BTW, over and over again, I have seen people move from a bad residence/location and then, 5-6 years later, obtain a remarkable recovery that they attribute to whatever treatment they were trying at the time. I'm not sure how that five-year mark corresponds to your starting ARV's though.)
I also am not sure whether heavy exposures to toxic mold or outdoor biotoxins were an initial factor responsible for your own illness. As you know, Ritchie Shoemaker suggests that Lyme creates an ionophore toxin similar to the toxins made by some molds, and that cross-reactivities between Lyme and mold are common (e.g. with people who get a Lyme infection becoming more sensitive to mold). My own guess is that an inflamed "toxic terrain" is what causes XMRV to activate, but that this terrain could be toxified by exposures to Lyme or to mold or to ciguatera-contaminated fish or to cyanobacteria or to the outdoor "Tahoe toxin." (Mercury is pretty inflammatory too, so I wouldn't be surprised if it's playing a role.) This is very complex and needs to have someone other than the overextended Ritchie Shoemaker studying it.
My observation thus far is that all people with ME/CFS (including those who got sick following a Lyme infection) are very sensitive to biotoxins in their environments but that most have no idea that's the case until they make a systematic effort to investigate the phenomenon. I wish someone would do a study, so that we all would know for sure, one way or the other.
During 2009, I spent about 10 days total driving around the area surrounding Santa Fe. I did not encounter any of the particularly problematic outdoor toxin that (we believe) was responsible for the severity of the Lake Tahoe epidemic, and that is present in quantity in places like Berkeley, Dallas and Ann Arbor. What I found instead was what seemed to me to be a somewhat less problematic outdoor toxin that did not cross-contaminate very much, and that was not nearly as devastating, but that nonetheless made me quite sick after several days' exposure to it. Several other mold avoiders report the same response.
People who are living in a moldy residence or in a place with the "Tahoe toxin" are the ones that need to be concerned about their possessions when trying out the "Locations Effect," I believe.
The possibility that someone would journey a long way to a really good place and then fail to experience any gains because of the "stuff factor" seems unfortunate. As you say, until there's a cure, successful management of the disease is all we can hope for.
It certainly does sound like you made a good choice for yourself, in terms of your own living environment. Not everyone with CFS has the opportunity to move to a perfect place and start their life over again, unfortunately. Those of us who have that opportunity have the moral responsibility to figure out exactly what it is that's helping us to get better and then to share that information with others, I believe.
At least, that's been my own motivating factor during these past few years.
Best, Lisa
>"More and more patients are taking matters into their own hands with the help from some compassionate people. Or doing what they've always done with this illness by acting as their own physicians. And they are getting better. This will be the proof they have been trying to stop. It's amazing what these pioneers harboring this newly found retrovirus can accomplish. We will not be silenced again."
Thank you, Anonymous, for this statement. I have been sick for 25 years now, and I know my time is running out. Your statement and Dr. Deckoff-Jones' words give me hope.
Patricia Carter
HGRV+, 25 years M.E.
>OK, Lisa. You made your point. It must be the "Hawaii effect:" and my easy life that's doing it. Now give it a rest please, at least until my next blog. I am growing weary of it. I am going to start removing repetitive or off-topic posts. Start your own blog, please.
Jamie
>Lisa — for crying out loud — must you hijack all of Jamie's posts with your mold issues. Have some respect. Start your own blog. I guess Eric will be chiming in any minute. What you are doing is extremely rude.
>Jamie, glad your Manchausen by proxy is in remission!!! Hehe! Thanks for the laugh.
I really don't like the pause button, I don't like the politics (within the patients and science politics). I hate to be dismissed by the consultants like if I mentioned I was abducted by the aliens. I hate not having a voice. I don't like the prospect to practice self medicine for few more months, seasons, years.
I believe it would be time for another awareness campaign (though miss Rivka is doing a fantastic job by herself) however it is already hard to be sick and fight the evils of our own community who seem to think that any research that is not WPI is no good.
the truth is we need more brilliant minds to help us out. i really hope they show up at IACFSME in Septemer.
Pardon my rambling it seems that my brain has trouble firing coherently.
Thank you for writing and keeping in touch. Without putting too much pressure on you, you are a lifeline for many.
C.J.
>Jamie,
Thanks as always to you and Ali for letting us know how you and Ali are doing.
Your count of years in the best case is horrifying. Many of us are not doing well.
If there are things independent advocates are not doing that they can do now, I hope we will find out about them. Can you think of more people can do?
>Yes, Jamie, thank you for your reports, and for the wonderful and memorable quotations you post.
-Erik
Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth;
Then took the other, as just as fair,
And having perhaps the better claim,
Because it was grassy and wanted wear;
Though as for that the passing there
Had worn them really about the same,
And both that morning equally lay
In leaves no step had trodden black.
Oh, I kept the first for another day!
Yet knowing how way leads on to way,
I doubted if I should ever come back.
I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I—
I took the one less traveled by,
And that has made all the difference.
"The Road Not Taken"
by Robert Frost
>Coffin's rare imagined event, of XMRV being created in 22Rv1, is much less rare if you take into account the infection of 293T (human kidney) cells with another XMRV-like virus in a number of NCI labs. But it appears he doesn't want us to know that.
http://www.informedhorizons.com/resistance2011/pdf/Coffin.pdf
v99
>is anyone else getting tired of Lisa's argumentative tone all the time?? Sorry Lisa but IT'S ANNOYING!
>No one with this disease has it easy.
>Yes I am getting tired of the moldies hijacking every thread. Please stop spamming this blog.
Thank you Jamie for your continued insights. You are much appreciated!
>Erik has been doing this sort of thing for many years. Now Lisa is doing similar things and she has a a PhD in marketing. This seems to me to be counterproductive to their stated goals,
I'd like to see the biotoxins/CFS connection adequately researched, but after the last blog comment section and this, I'm wondering what the long-term effects of the 'extreme mold avoidance protocol' are.
>Thanks for putting yourself out there for ME patients. I wish I lived in Hawai so you could be my doctor.:( ALL my doctor ever wants to do is give me Nuerontin which just spaces me out and he never wants to run ay tests on me or give me any referals. I feel neglected as allways by the medical establishment.
>The one thing I love about scientists is that they love to out-nerd each other. The MLV query is far from over and I suspect, to Coffin's dismay, there is smoldering doubt about the doubters. The paper you cited is encouraging.
(I personally find Cult Mold entertaining – but yeah it gets old and it's certainly bad PR for those of us who want this illness to be taken seriously. I'm hoping Erik will sense a Mysterious Toxic Substance in laptops, desktops, and cell phones. :)
>Jamie, great blog, as always!
Don't be too concerned about losing the benefits you surely have been bilking the system for with your Munchausen Syndrome By Proxy: I'm sure the APA is hard at work on a new diagnosis for parents who care too much about their children's health, maybe similar to the eating disorder they now have for people obsessed with healthy foods : )
I would love to see you write about the patholophysiology of XMRV/XAND/ME/CFS in relation to the inability to travel, since your improvements have meant improvements in that symptom. I can't travel at all, which has been true for over a decade and is true — as we all know — of many severe patients. But it's a hard symptom to explain to others, that is, why travel can cause permanent additional disability for some of us, or very long-term exacerbations. I don't know of any other illness in which patients tell stories like "I attempted a car trip ten years ago, came back with ten new debilitating symptoms, spent the next several years barely able to feed myself, and haven't come back from it ten years later." So what is going on in our bodies to explain why this happens, or why even in milder cases of the illness travel can cause such severe payback? My first infectious disease doctor (who had a lot of ME/CFS patients) was the first to point it out to me, when I had only been sick a few years. I had returned from a long trip, and finally made it into her office about six months later. I was so much sicker than I had been before the trip, but didn't connect the two events. "Why am I so sick right now?" I asked, and she matter-of-factly said, "you're still crashing from your trip many months ago." I didn't understand how this could be possible, but the crashes kept getting longer and more severe. She clearly had seen many cases of this in ME/CFS, to the point that she expected it as a symptom.
Peggy
>Comments provide a good thermal reading of an article/blogpost. They also help us hone our critical thinking skills and make us better thinkers. I love reading comments. I even enjoy reading LIsa's comments, however, I must agree that she has been overstepping some boundaries lately…
Really appreciate your posts Jamie.
Best,
VSparrow
>Yes. The patients are ready to take action NOW and do what we can to accelerate research, but we need guidance. Jamie, what are your plans to mobilize patients?
>Hi Chris,
Here are just a few ideas for patients who may want to take action to raise awareness and money for ME/CFS research:
One idea for mobilizing patients is for each of us (who is able) to lead our own mini-demo, outside, at a local gov't office — most especially the regional offices of the CDC and NIH. Hold a sign demanding an increase in research money for ME/CFS. One person with a sign can get media attention. I know only folks who can get out of bed and out of the house can do this. And that is rare in our community. Anyway, I'm bedridden much of the time I have done a few of these demos and, yes, each one requires a few months recovery time for me. Sucks. But if more of us did this, and it made the newspapers in most of our major cities, we'd have an impact.
Another idea is for a fundraising effort for WPI. Anyone is welcome to help organize (or find a healthy relative/friend to help organize) a dramatic reading of a new play that is a collection of stories from people living with ME/CFS. They did this last wk in Missouri and it was a success, and got press attention.
http://www.news-leader.com/article/20110714/NEWS01/110714024/MSU-actors-present-real-life-stories-people-chronic-fatigue-syndrome?odyssey=mod
The play can be done on the street, like street theater, or in an inside venue, to raise money. Both efforts raise public awareness, of course.
If anyone wants to do either of these efforts, feel free to email me.
From her bed,
Rivka (at) ThatTakesOvaries (dot) org
>Chris,
Here is a concise list.
http://thekafkapandemic.blogspot.com/p/contribute.html
>Thank you Jamie, for your very informative blog.
I have a question about Ali's use of supplemental oxygen at 10 L/min for about an hour a day. I also have severe MCS in addition to CFS, and have used oxygen to remedy toxic exposures, but never at that high of a flow. In fact, the regulator on my tank only goes up to 8L, and I was warned to not exceed 6L. I often feel that 6L is not enough to clear the MCS reactions. So now I am curious about using it at a higher flow. Where can I get more information about this? Any additional information would be appreciated.
>Anonymous 7;45.
Any particular reason for you to single out "laptops, desktops, and cell phones"?
Are they problematic for you, or do you mock those who believe they are?
>Please go easy on our dear Lisa. She is an asset to our community. I hope folks can put her comments into this context: When any of us finds something that helps us to (finally!) feel healthy again, we become a bit evangelistic because we want so badly to help others feel better, too, like we do. I appreciate Lisa and her contributions to our community. — Rivka
>I agree with RIvka. I do not find Lisa's posts argumentative at all, just persistent. She is polite and clear about her observations.
She is adding, peripherally, an element that I believe is KEY for the upcoming research, which is this:
Much like all the other viruses, bacteria, spirochetes, and pathogens that we with this illness all suffer from chronically, MLVs are also found in the generally healthy population without consequence. If we are to continue with research into the MLVs and the herpes viruses etc, scientists will HAVE to become less myopically focused on one thing, and work together to understand WHY these things go chronic in us.
This will necessarily require a hard look at the insane amount of chemicals, heavy metals, and other toxins that pollute our food, air, water, soil, and inner terrain. This includes the weird molds generated by agricultural pesticides, unrecognizable-by-the-body proteins in GMOs, the rampant use of perfumes and perfumed products, the myriad petrochemical products, pesticides and herbicides, fire retardants, pollution in general, additives in everything from food to textiles to cigarettes—-you get the picture.
Few scientists seem willing to take a cooperative approach, let alone collectively recognize that the modern industrial model is making us (the whole population) sick, and must be changed ASAP.
So to conclude, the excerpts you post, Jamie, are wonderful (and so sad these things don't get press releases and media attention like the "other side" does) but is only one piece of our puzzle.
There MUST be a giant wake-up call to the world that we are collectively poisoning ourselves, and that no matter what description we give to a certain set of symptom displays–ME, Autism, Parkinson's, Cancer, MS, Heart Disease, Obesity, AIDS, FMS—they are just various proofs that we are living out of balance with nature and it is time to gird our collective loins and really deal with this dark beast that has gained so much momentum.
The toxic onslaught is so huge now (as anyone with MCS is agonizingly aware) that it is no wonder our bodies cannot fight off viruses that might otherwise just lay dormant. I truly hope we can find some treatment for the MLVs and other viruses to help our bodies achieve homeostasis again–but in the end it does not address the WHY of how we came to be so overrun by them in the first place.
>I agree with you Leela, but the constant usurping of the conversation is really starting to annoy me. Others too. Way too many comments and too much of my mail is about this. I will put a stop to it if I have to, but would rather that the mold warriors control themselves a little. Their behavior is pretty OCD, in my opinion. An observation has been made, by a couple of people, like many other observations about the illness. There is no reason for it to take over the discussion every time I write something. Lisa, Erik, we all get it. Radical avoidance has worked for you and some other people. Please cease and desist. Or join the discussion rather than taking it over.
Thank you,
Jamie
>Axis II OCD
>– but for some – it doesn't. I am glad to hear that people are doing better. But this involves real expert care; IVIG, O2, ARV's, glutathione. Or flying to Hawaii – or Reno – or maybe a (?) handful of other drs in the entire country. My guess would be maybe 5% (?) of the patient population could come close.
Experts are pretty much those who "believe" in it. Most cannot get basic rest and support, let alone exotic treatments. Or they are misdiagnosed, mistreated or not diagnosed at all…. (Anyone with ME who is diagnosed with CFS is misdiagnosed, leading directly to trivialization, psychologizing and lack of any appropriate treatment.)
The gap is so huge and striking, I think of the many more who lie in darkened rooms, sick, in pain, with little to no care and abandoned by family, the medical profession and society. Far too many have died as a result. And then there's the children…. Thank you Dr. Jamie, I am so glad to hear this in terms of real hope, but we have such a long way to go.
>Sorry to repost this, but I think it got buried in the mold discussion.
SO HERE IS MY QUESTION AGAIN.
Regarding Ali's use of supplemental oxygen at 10 L/min for about an hour a day… I also have severe MCS in addition to CFS, and have used oxygen to remedy toxic exposures, but never at that high of a flow. In fact, the regulator on my tank only goes up to 8L. I often feel that 6L is not enough to clear the MCS reactions. So now I am curious about using it at a higher flow.
Where can I get more information about this? Any additional information would be appreciated.
THANK YOU, ~~DB
>HGRVs may be found in the healthy population, but we do not know if that is without consequence. All of them may develop disease. Herpes viruses are also not the cause, they have been studied to death and cannot cause ME. They don't work that way. The reason people have reactivating viruses is because of HGRVs.
>Back to the actual blog – if MLV's are highly infectious to lab workers – where are all the sick lab workers?
What we can do right now – vote every day for WPI in the Vivint contest (to win $100,000), and also donate to WPI in the Vivint contest – there is a matching grant going on right now which will double your money.
* Join Facebook Now! (US or international ok)
* Then "Like" Vivint on Facebook – http://www.vivint.com/givesbackproject/about
* Every Day Endorse WPI – http://www.vivint.com/givesbackproject/charity/769
* Sign up for daily reminders here: https://www.facebook.com/event.php?eid=121179681298558
* Contest runs through August 27, 2011
>I have questions regarding oxygen and should probably go back and read your previous post(s).
My doc (bless her!) recently prescribed oxygen after my reading about it here. She told me she had no experience but gave me a script after a brief phone consult while I was there.
Before filling the prescription, my PA neighbor trained in oxygen therapy, told me to be careful, that I could get too much, etc. Due to his warnings, I decided not to fill the Rx until I got more information.
>Regardless of the provocation, an M.D. who specializes in CFS should not be using a public forum to diagnose people who have stated publicly that they have the disease with an official mental disorder.
The fact that the main blog post expressed concern about the psychologizing of the disease (CSSD) just makes it worse.
Perhaps I'm overreacting to be as upset about this as I am, but I don't think so.
>Lisa,
It was not a diagnosis. I used it as a descriptive term, as an adjective. I don't want to hurt anyone's feelings. Really. I just want the behavior to stop. It is rude. You are hurting your own message. And don't start with me about how I shouldn't state my opinions because I am a doctor. We've all had enough withholding from our doctors.
Jamie
>Oh I'm sure there are sick lab workers. They just either have cancer, neuroimmune disorders or the retrovirus has not yet triggered their illness. Or which illness they might get. In my families case there are 6 separate illnesses. I'm positive for HGRV.
>Jamie, what you did was use your medical authority to pull out a psychiatric diagnosis to disparage people with CFS, in order to diminish their credibility and get them to stop bothering you with their conceptions of what this disease is all about.
How is that different than what the psychologizers do? Except that (as far as I've seen) they've not picked out specific people who've revealed their real names and done it on a public forum?
And for what it's worth, OCD is a diagnosis, not an adjective. As a medical doctor, you should know that.
>Sigh. If you don't like me, go away.
Jamie
>Sorry. That was inappropriate. Lisa, give me a break. I write in an attempt to shed a little light. I want people to share their ideas, even if they don't agree with me, though I ask that it be civil. But you are at me all the time. I'm tired of it. It feels personal at this point. You are the only person I have considered blocking. Why is that?
Jamie
>OCDish if you prefer.
>Lisa and Erik have been hijacking your blog, Jamie. You have all the rights to say enough is enough.
I personally have had enough of that, particularily because it's gng on and on and on… And also because it's consistantly off topic.
Please, start your own forum, or your own blog and build your readership. Do no hijack somene else's blog to pass a message.
CJ
>LIsa and Erik are everywhere talking about Mold. You guys really need to start your own Blog or facebook page or something. The mold issue gets weary for those that have ruled it out especially.
I respect you guys but please start your own page or something.
>I went through the mold treatment protocal. It did absolutely NOTHING. I have a retrovirus.
>as long as greed leads pharma and oil/automotive industries to take our lives and our health (with the cooperation and complicity of our government), and medical/pseudo-medical "science" is being foisted on the world so that patents can be manipulated and fortunes made…as long as these profit mongering conditions continue to bloom – we have no chance, or very little, of ever seeing anything done on our behalf.
I remember lily tomlin saying she resented losing the ozone so the housewives of america could have spam..that is such a minute amount of harm in a world now jam-packed with toxins.
>This is MY THIRD ATTEMPT to get an answer to this question. Maybe if it wasn't for the mold warriors, it would have actually been noticed. (HINT!)
HELLO JAMIE–HERE IS MY QUESTION AGAIN.
Regarding Ali's use of supplemental oxygen at 10 L/min for about an hour a day… I also have severe MCS in addition to CFS, and have used oxygen to remedy toxic exposures, but never at that high of a flow. In fact, the regulator on my tank only goes up to 8L. I often feel that 6L is not enough to clear the MCS reactions. So now I am curious about using it at a higher flow.
Where can I get more information about this? Any additional information would be appreciated.
THANK YOU
>Peggy, you alone asked the right question.
Nice work, and you've got a smart doctor.
>Anon x 3,
Sorry to be slow. Busy day here:).
Oxygen should be delivered with properly sized equipment for the patient and appropriate flow rates for the delivery device.
Nasal cannula: flow rate 1-6 L/min, delivers 24-40 %
Simple mask: flow rate 6-12 L/min delivers 28-50 %
Non-rebreather mask: flow rate 10-15 L/min, delivers 90+ %
Jamie
>Sadly, I agree with Anon July 18, 7:27 PM.
It's highly unlikely CFS will get the support it deserves in our lifetime.