Where Do We Go From Here?

“If you’re not catching flak, you’re not over the target.” – U.S. Air Force

I’m feeling like a lightening rod, but I guess I asked for it. I thought about making people sign in and tell us who they are, but that would keep some people away whose thoughts we would like to hear, so I’m going to leave it alone. Dissenting opinions are welcome, and no need to be apologetic, but I ask that everyone be civil and I do encourage leaving real names. You know who I am; I’d like to know who you are. Please don’t take your frustrations out on me. I don’t want to moderate, and I want everyone to have a chance to have their say, in a considered way. The few who have needed to lash out have been more than offset by the statements of personal triumph by people finding meaning in their lives despite the losses and injustices they have suffered.

The list of treatment options that I posted a few days ago is a work in progress and I hope it will be viewed as such. One of my concerns is that things will be lifted from the blog as my prescription for everybody. The downside of this blog for me is that I may get quoted incorrectly. Also my opinion may change. So I ask everyone to respect that I am sharing my thoughts openly in real time, and not put the list out there as Dr. Deckoff-Jones’ treatment protocol, written in stone and never to be changed. It’s for discussion. I have added a few things to it since I posted, from your suggestions. Keep it coming.

Like everything I write, I am putting it out there in the hope that it helps someone. I AM NOT TELLING ANYONE WHAT TO DO. I am sharing my ideas. There may be inconsistencies that I’m working on. Please contribute your experiences. If you disagree with something, don’t attack me or be defensive yourself. Just tell us why you disagree. Maybe we can figure out how to have the discussion without people becoming hot and bothered. But if not, we’ll forge ahead anyway.

Lots of questions about Ampligen. I don’t know very much about Ampligen. My bias in all this is to believe the patients, because that’s where the best information comes from. Just about everyone else has a dog in the fight. The things I have heard about Ampligen are mostly negative, or positive and then negative, but it’s a small number. There are very few advocates for it after more than 20 years. Hemispherx reports that 900 people have been treated with 90,000 doses to date. The available evidence with respect to XMRV is mixed. From Dr. Lapp’s newsletter of March 2011:

Dr. David Strayer, Medical Director at Hemipsherx Biopharma, described a retrospective study… 208 subjects from a previous double blind placebo controlled Ampligen study were analyzed for XMRV. About one third were positive for the virus and two-thirds were not. Activity monitoring demonstrated less activity in XMRV+ subjects. That is, they were less active and presumably more ill. Specifically, the improvement in exercise ability was monitored in these subjects. More improvement was measured inXMRV+ subjects than in XMRV-subjects. The table below describes the percentage of subjects who obtained at least 25% improvement in treadmill exercise duration at week 40 of treatment, as related to XMRV serology:

XMRV Status
Improved on Ampligen
Improved with placebo
Difference (AMP-PBO)
Pos (n=81)
Neg (n=127)

Dr. Strayer concluded that there was a 70% greater than average exercise response in XMRV+ subjects, and a 40% lower response in those who were XMRV-. Medication use was monitored in all of these subjects as well. 53% of XMRV+ subjects were able to reduce their use of symptomatic medications, while only 32% of XMRV- subjects were able to reduce medication use.

These aren’t exactly stellar results given all the wear and tear, unless of course you are one of the lucky ones. Dr. Mikovits reported in her Santa Rosa talk that about a third of the patients she has looked at had evidence of viral activation when treated with Ampligen (unpublished). So her observation, in addition to the less than exciting anecdotal evidence, gives me serious pause, but apparently a multi-site study is forthcoming, so we will have more information to consider. At least someone is studying something with respect to treatment, though it is the first clinical trial I have ever heard of where the patients are paying for the drug. While waiting for the results, I guess it is up for consideration, so I added it to the list with a question mark, but it’s a big question mark. Personally, I am not interested at this time.

The most interesting thing I’ve heard about recently is Dr. Urnovitz’s new rapid deep sequencer. From the press releases linked here for the Chronix/Hemispherx joint patent application announcement for a CFS blood test:

The Chronix experimental approach analyzes fragments of DNA often released into the bloodstream during the process of apoptosis or programmed cell death. Chronix is using its proprietary technology and advanced DNA sequencing platforms to measure alterations in specific regions of the chromosome, which can be detected as distinctive “signatures” in cell-free blood-borne DNA. By focusing on these signatures, Chronix’s technology can detect the presence of disease-damaged cells in simple blood samples without needing to biopsy diseased cells or tissues.

“Our technology—based on DNA released into the bloodstream by dying and damaged cells—taps into the dynamic information provided by the genomic alterations unique to each diseased cell. We capture what is happening to the DNA very early in and throughout the disease process, in real time, and patient by patient. That’s how our approach differs from other tests that focus on static genomic data or protein biomarkers,” said Dr. Urnovitz. The patient-unique signatures captured by the Chronix technology may prove useful as a companion diagnostic – a test that is used to help guide treatment decisions – and to provide information about the disease process to help pharmaceutical companies select the most efficacious drug candidates.

The Chronix approach has been validated in a number of peer-reviewed settings. At the ASCO meeting in June, Chronix researchers presented data showing that its assay detected breast cancer and invasive prostate cancer with 92% sensitivity and 100% specificity. Additional published studies have demonstrated that the Chronix technology can identify the presence or absence of active disease in multiple sclerosis patients, and that it can accurately detect early stage breast cancer with high diagnostic sensitivity and specificity.

A number of people have asked me what supplements I take. I have swallowing and appetite problems. If I take all the things I would like to, it’s a small meal that doesn’t go down well. When I take supplements, I take Meriva SR, B12 (in addition to Deplin), NAC, glutamine, L carnitine, CoQ 10, Vitamin C and undenatured whey protein. I also take Hawthorne tincture sometimes. I have never noticed a difference from a supplement, except transient effects from high doses of single amino acids. I have responded to herbs at times, especially teas. I miss Deplin if I stop it. There are other supplements that make sense with respect to what is known about how supplements impact HIV. I’ll discuss those ideas more in the future.

The active form of Vitamin D, D3, is a hormone with effects all over the body, including regulation of the immune system. Vitamin D ligands enhance NK cell and macrophage function. Supplementation for inadequate levels is very important. I left it off my list initially and one penpal reminded me that Vitamin D3 supplementation is the only thing that ever helped her noticeably. Levels should be followed. The literature is vast. Here, for the flavor, are a few abstracts from the last couple of months.

Vitamin d as a T-cell modulator in multiple sclerosis. Smolders
Vitamin d and inflammatory bowel disease. Ardizzone
Vitamin d deficiency and connective tissue disease. Zold
Vitamin d and innate and adaptive immunity. Hewison
Antibacterial effects of vitamin D. Hewison 

Antibiotics again. I am in support of using antibiotics if they work. I think the ILADS guidelines are dangerous with respect to their recommending long term intravenous drugs in combinations for years, even if it’s not clear they’re working. I did it. It didn’t work. It hasn’t worked for many people. It appears to work for a few people, like anything. There is no way to know if those people got better because of their treatment or despite it, because some people get better slowly anyway without treatment. Putting it all together, some people need a long term oral antibiotic to maintain a level of poor health, maybe because Borrelia burgdorferi is being suppressed, or maybe not, but it’s obvious that those people should continue their antibiotic. It is also rational, if you think Bb is the problem and it’s been there for a long time untreated or the patient is immunocompromised to try and clean them up with IV antibiotics. If they respond partially, you might want to continue for a while, duration to be determined within the confines of the doctor patient relationship. If a patient responds to IVs they should be offered orals after. Babesia, if present, should be treated in a symptomatic or deteriorating patient, but treatment doesn’t always get rid of it.

I am aware of the apparent inconsistency, mentioned by several people, that I am “for” antiretrovirals and “against” antibiotics. I hope that what I’ve written above clears up part of it. I listed anitretrovirals, not because I think everyone should take them, but because I think they should be considered, like everything else on the list. The option should not be buried because it’s not a cure. There is no cure. The list is in no particular order. I suppose I listed antiretrovirals first, because it’s the thing on the list that is hardest to access, but should be up for discussion, in my opinion. When I started taking them, I expected there would be a viral load measure available by now, and there isn’t. That makes it a tough call with respect to where to go from here, needing to make a decision in the dark. I can say without qualification that for me, antiretrovirals are much easier to take than antibiotics, but it is not an either or.

The responses I get from the Lyme community are sometimes irrational. They feel I am attacking the only help they have, their LLMDs. But I am attacking the extremely faulty guidelines that ILADS continues to put out there to influence unsuspecting physicians. I know quite a few doctors who treat Lyme and are most definitely “Lyme literate” that don’t belong to ILADS, or did and have quit. They resent that they are being painted with the same brush. If you have a good Lyme doctor, I hope he or she will consider my ideas. I am most certainly not attacking any doctor who wants to figure out how to help patients. ILADS was a good try. I was a member for six years. Time to move on. My opinion. Everybody gets to do what they want.

As for privilege. I grew up with advantages. My husband grew up poor. We’ve had money and not had money. It’s better to have money, but money and privilege are in no way protection from the disease. The real privilege I have, is the privilege of perspective, and that perspective is growing from your contributions.

I am all for angry advocacy, as I’ve said. I think we should do something dramatic, like camp out in front of the CDC this summer and throw fake blood on the steps in a proper demonstration, demanding big time funding for a change. CFS, ASD, GWI all together. A lot of people. In the Lyme community anger problems are called “Lyme Rage”. Like anxiety and depression, anger problems are common in neurodegenerative diseases, but blind striking out works against us. It turns off people that we need, reasonable people with normal lives who would like to help. We want what people with other diseases get, compassion, so we can stop saying we’d rather have cancer or AIDS. We are in need of help. When asking for help, one should remember the costs and rewards to the helper. The feeling of compassion for another is it’s own reward, but it’s hard to be compassionate when under attack, too busy turning the other cheek or striking back.

This discussion of who suffers the worst seems to me to be at the heart of the problem at hand. How do you come to terms with the anger and loss, while maintaining or growing compassion for others? There is a small subset of CFS patients that are unbelievably sick and stay that way for a very long time. A living hell. A contender for one of the worst things that can happen to someone. Yet, even they sometimes have some spontaneous recovery. In that way, we are lucky. And it’s important for those that are not so sick to know that this is not where the disease always goes. It doesn’t usually get so severe and there are ways to move it in your favor. We don’t know why some people get so sick and others don’t. But getting sick isn’t a given, nor is progression. Though there are clearly stages to the disease, there may be ways to slow progression.

There was a very sad comment by a woman who said she hadn’t been touched since her doctor shook her hand in January. Touch is a basic human need. I often think there needs to be communal living with assistance for CFS patients. To the woman who wrote that comment. I know many of us wish we could hug you. The energy I get from friends in the ether helps me. Not the same as a hug, but something.

It is important to know who you are mad at. It’s not us against the world. We won’t get anywhere that way. We need to differentiate between our friends, the misguided who should be forgiven and a few evil people who don’t deserve our forgiveness. We will grow if we can have compassion for others who suffer too. Nelson Mandela spent 27 years in prison, came out and worked with his jailers. He helped his countrymen much more by working for reconciliation than if he had needed to spit on his captors.

Does anyone remember the old movie “On The Beach”? Gregory Peck, Ava Gardner, Fred Astaire? For some reason, it’s been in my thoughts recently, maybe because of the nuclear disaster in Japan. The world is ending after a nuclear holocaust and a few people in Australia are still alive, waiting for the fallout to come, gathering together in a park. Waltzing Matilda is playing in the background. The Salvation Army has hung up a giant banner that says, “There Is Still Time Brother.”

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42 thoughts on “Where Do We Go From Here?

  1. >>We don't know why some people get so sick and others don't.

    This is the question that Erik has the answer to.

    If folks don't believe he has the answer — have you asked?

    Or if folks think they know what his answer is — have you made any attempt to find out if he's right?

    If it turns out that he's wrong: big deal. A few wasted hours examining a possibility.

    But if it turns out that he's right:

    What kind of waste of time was it not to have even bothered to consider it?

    How many patients have been harmed by not knowing that their illness could be mild rather than super-severe?

    What do we — not just Erik and me, but others who are frustrated with people in positions of authority not paying attention to this effect — have to do to get them to even LOOK at it?

    How many more decades does this have to go on?


    Lisa Petrison

  2. >Love ya, Jamie. Thanks for providing so much information on your blog. I appreciate it tremendously. I'm X+ and currently trying antiretrovirals, but I certainly would not recommend it to anyone at this point. I'm just hoping that my experience will be added to the mix as all this shakes out.

  3. >I don't see a lot of blind striking out in rage in the ME community. I personally generally disagree with criticisms I've seen of MCWPA. Other than that, I see few criticisms I disagree with, much less any which are "blindly striking out in rage" especially against those that are open to listening to us. In my experience, the ME community is effusive in it's praise and thanks of those who listen to us and respond to us without bias and abuse.

    You mentioned in a prior post a cartoon of Trine T eating a baby on ageofautism.com. That's from the autism community, not us, so why use it as an example of pwME lashing out inappropriately?

  4. >"If you're not catching flak, you're not over the target." – U.S. Air Force

    You are saying you are catching flak from pwME. This quote suggests you are properly targeting pwME for attack. I know you don't mean that, so why don't you rephrase what you're trying to say here.

  5. >Lisa, it's hard to know what Erik is getting at because his posts tend to be cryptic. It's very frustrating not to be able to read some straight talk in language as plain as possible.

  6. >Jamie, i really appreciate your insight about anger. There is a lot of anger in me, and I keep wondering why. Some of it is the grief of a chronic illness, coping with the losses, some of it is the grief of the lack of medical care, dealing with disability insurance. There is also so much infighting between patients that it fuels my/our anger in an unproductive way.
    I can only hope that science can rally behind us and figures out ways to help us, just like what WPI is doing. There is so much work to be done! I am thankful of WPI for giving hope.
    signing with my real name, Kati

  7. >Justin,

    You seem to feel misunderstood by my writing, and I feel misunderstood by your comments. When I spoke of entitlement, I didn't mean that the government shouldn't be on the hook for the research and spend an amount commensurate with the number of people affected. I was speaking of something else entirely. I guess I need to clarify that further. And I've written about the abuse so much that it was an assumption, but apparently I should have stated that more clearly as well. I was trying to talk about behavior and how we appear to the outside world as a community and how we might be more effective in getting what we need. It's hard stuff, and it seems to have hit a nerve. The autism community has many of the same problems we do, as does the Lyme community.


  8. >"I think we should do something dramatic, like camp out in front of the CDC this summer and throw fake blood on the steps in a proper demonstration."

    OK, when? I just got someone to commit to assisting me on the trip.

  9. >Hi Grant,

    If you or anyone would like more info on this topic, please feel free to write me.


    Lisa Petrison

    lisapetrison at yahoo

  10. >I think there may be different interpretations of some things that have been said. So I'll offer my two cents.

    The idea of playing nice? I've gone back & forth between agreeing with the idea that we need to ACT UP (but of course we're really not capable or we would have), and feeling that a calm tone in relaying a specific, targeted message is what's required.

    Only recently have I thought about how it seems both are correct, depending on the recipient of the message and the situation. For the government? Full-court press, as much Acting Up as we can muster–hat tip to Rivka, for instance.

    Yet I also think this approach doesn't make sense for journalists, at least not these days. Things have changed. People are listening to patients, not for the first time, but more than ever before. I wrote 3 long blogs about how I see Trine Tsouderos' coverage on XMRV as unfair, but I stayed away from insult and anger to the best of my ability because I wanted to be able to discuss it rationally, if at all possible.

    As it turned out, I had an opportunity to speak with Trine. Although I'm not sure I agree with Jamie's assessment of her, I saw nothing to be gained by being an aggressive lout–in spite of a strong temptation to do so. I haven't written about this yet, but I will soon. What I got across to her, because she was willing to listen to someone who wasn't being an aggressive lout, I thought was at least marginally significant, and hopefully more.

    Is that an argument for using an 'inside voice?' Well, no; that's been rendered a joke, of course. But to the extent I thought it was worth it, I chose not to unload as I would on the doctors I've had negative experiences with, the family & friends who disappeared, and, most of all, those in the government whose job it is to have done something about this invisible plight we deal with, that nobody cares about.

    There's a place for anger, and there's a place for restraint. I think we have to be smart about what works better, for whom, at what time, and in what venue. I do think we're entitled to all the anger we've ever shown, but that doesn't mean it makes sense in every situation. Also to be kept in mind is the differences in how we approach the issue in the US vs. other countries. I figure it's a lot harder to temper anger in the UK no matter what the circumstances.

  11. >As for counting our blessings that we're not starving in the third world? I told myself that every day for years. It helped me cope. I still embrace the sentiment. I'm thankful that my situation, bad as it is, isn't worse. But it's a luxury in a sense to even consider that attitude, because it's tremendously unfair to discount our own suffering, the scorn endured, no treatments, endless pain and disability. What I see as important is striking a balance. When I got sick my wife cared for me, as she does to this day although she's now stricken as well. I felt it unfair to flaunt an ability to cope on the basis of 'things could always be worse' when she was doing so much and getting so little back in return.

    Finding that balance between knowing how much worse things could be yet not losing sight of how much they do suck is difficult, and maintaining it isn't easy, either. But it works for me.

    I don't agree with everything Jamie says–like most people. I appreciate where she's coming from, though, that she's honest, and that she's capable of providing a voice with a fairly unique point of view in our patient community. I think looking at her blog as a whole is important in assessing its value. And we're not going to agree with every single idea–we shouldn't. Should we all get along? Probably not. But there's not getting along with nonstop hostility, and not getting along with targeted, specific examples of why hostility can be so much more effective when employed judiciously. It would be easier if so many of us didn't have the problems we do with various patient advocates. I can't get along with some of them. At the same time, I don't want to be a jerk about it.

    None of this is easy.

    I don't agree with everything Jamie has to say, but I support her.

  12. >I have only recently been diagnosed (6 months) with CFS but struck basically overnight at the age of 25. Followed by the common "doctor dance" for 2.5 years. I am XMRV+ and searching for treatments, and that is how I found your blog. Looks like it was your last blog. The list is very helpful so thanks.

    I can relate all to well to the short tempered lash outs and anger. I have noticed there seems to be two very different types for me.
    Like many, I have lost my dream job because I simply cant do anything.
    I have never been a confrontational or aggressive person until becoming ill. In fact I have made a point to get help for it because its such a horrible feeling when you do it to people that don't deserve it. People who are trying to help even. I don't know if it comes from the illness directly(biologically) or if its the overwhelming disability this disease causes in every single aspect of life. Things that use to be so simple like buying groceries, relaxing, even sitting up are now so horribly difficult. Having to ask for help in almost everything I do is so new and frustrating and it keeps building up all day or week or month until something triggers a lash out. Could be a slow cashier, family member, or bloggers. Since a lot of us don't get out much, seems more likely to happen online.

    But then there is the blinding anger I experience when it comes to the politics of the disease. The governments stand on CFS is unbelievable to me. I had a great childhood. I was also a Div 1 athlete in college. Trust me I know how to push through the pain of exercise But suddenly simply standing up to long makes me sick as hell. Even the disability claims process would be near impossible if I didn't have a caring fiance. I know I'm preaching to the choir.

    When you combine the two you get something as explosive as political and religious debates. I guess my point is to try not to take anybody's comments too personal. Were products of our environment weather its acceptable or not. I do admire many of your followers that have found a way to be happy despite all this hell. I am very jealous and desperately trying to find my own way to cope.

    By the way throwing fake blood at the CDC still sounds like a good idea to me. Maybe I could sneak a bit of my own in there. It would so tragic if one of those CDC CFS hotshots got sick.

  13. >" I think we should do something dramatic, like camp out in front of the CDC this summer and throw fake blood on the steps in a proper demonstration, demanding big time funding for a change. "

    That's all well and good, but, after the Nature News article and general painting of Mikovits to lack proper scientific objectivity in the press, should the medical director of the WPI (you) go on record about this type of stuff?

    I know this comment is going to catch a lot of flak (ha!) but, as I see it, the WPI 1) can't get grants and 2) can't publish. This is evidence, to me, of a serious public relations issue. I love Mikovits, and she loves patients (bless her), but, she needs to stop talking to the press. The best thing the WPI can do to help us as patients is to get credible research published in journals. This is not going to happen as long as it's viewed as an advocacy organization rather than a research organization.

  14. >Jamie, I've never responded here, but enjoy reading your perspectives both as a physician/scientist and patient. Please continue to "speak" your mind.

    I, too, am sometimes blown away by the anger in the M.E. community. I guess I understand where it is coming from (I'm angry too). We live normal lives, get sick one day and realize that after a diagnosis of M.E./CFS we are sentenced to years laying in bed terribly sick with no help from the medical community and stimatization by family, friends and the people we had believed "helped" the sick (medical field).

    But why take this anger out on others who are just struggling to survive, and "figure it out" like the rest of us?

    It makes me want to remain invisible and avoid advocating for M.E….

    People need to learn that it's OK to have a difference of opinion, or a different take on something. Ultimately, we all want the same thing: Better research, anykind of useful treatment, respect, empathy, validation.

    Once again, keep of the blogging. Eventually I hope I find some "pearl" somewhere that will help me improve my quality of life.

  15. >Thank you Anonymous 5:18 AM, for being so honest.I think what you've written goes to the heart of the matter. Generalizing from individual experience is dangerous, but the problem you've described is common. It is a very important topic.


  16. >All I know is that I enjoy this blog. It makes me think,and that at least allows me the knowledge that something is still working in this oh so tired body.

    I don't understand the disagreeing nature of some, as it is a blog and if you read it you can either take something from it, or walk away. I choose to stay. It is fine to not agree, but do you have to be upset if you are not hearing what you would like to hear?

    Thank-you Jamie, I appreciate what you write and the information you pass on.

  17. >I guess the great thing about the web, as well as the down side, is one gets so many different opinions. Probably explains the variety of responses.

    I too the the other person am affected by the politics and special interests. Being sick is frustrating becuase not only does it render one helpless, she/he has to deal with all kinds of new strange realities of how our government really works.

    It's also really hard to comprehend where the threat is coming from. We see it in the newspapers, in the CDC reeves/ wessely research, and in the other organizations seems to release information that is scewed and unscientific.

    We even experience insults from doctors who actually now believe the years of Psychobabble they have been conditioned with from cartoons to Other forms of spin.

    It has hit me like a ton of bricks, and seems like a very bad dream that possibly be reality, but I've seen too much proof to believe otherwise.

  18. >Jamie, I cannot trust your comprehension of my illness, as you are unable to express it in meaningful terms.

    If you don't understand my illness, I cannot be sure of your treatments.

    And in my case, I refer to the Raggedy Ann Disease: the "Tahoe Flu" which CFS was based on.

  19. >If anyone can find so much as ONE post of mine that is "cryptic", please post it.

    I am about as straightforward as it gets.

  20. >I don't know what to say Erik. Take it easy? I've presented evidence on this blog that the Tahoe outbreak wasn't the first, and it certainly wasn't the only one. Your experience is a contribution, but clearly not representative of everybody, or even all the people who got sick at Tahoe. You don't have to agree with everything, or anything I've said. It's OK.


  21. >Jamie, as described in Osler's Web, Dr Komaroff and Dr Carol Jessop saw an illness they couldn't put a name to, prior to our cohort.
    But ours was the "original CFS cohort" because our cohort was the illnes that had the evidence which forced the creation of a new syndrome.

    It has been my LONG experience that the only reason people insistently assert that our cohort "is not the first" is they are greatly affronted by the thought that I can speak more authoritatively than they.
    But by shifting their paradigm to all other clusters being equal, they revert the CFS knowledge-base backwards by depriving the conceptual framework of our evidence.

    Yet this is the evidence that caused the syndrome to be created.
    By doing this, you move "what CFS is" back to little more than CEBV Syndrome.

    While the illness certainly preceded our cohort, it is general knowledge that the CFS was the term given to an outbreak of ME… 25 years ago:


  22. >Regardless of what YOUR concept of CFS is, if you cannot explain MINE, you are not referring to that specific illness-entity.

  23. >Hello, everyone. My name is Marcie Myers. I don't know who "Erik" is nor what his views are. I'd simply like to add that the FDA is REQUIRING that this next double blind placebo study be done before they're going to FINALLY approve Ampligen (or not) for use on with CFS patients XMRV+ or not. This study is a "treatment protocol" study and NOT a drug study and consequently insurance may cover some or all expenses involved. It becomes imperative, therefore, that as many individuals enlist in this study IF POSSIBLE in order to move this 22 yr old research of Ampligen to completion. To quote the FDA in DEC 2009 "Ampligen is "approvable" but requested that more subjects be treated to assure safety and efficacy". This info from the Hunter-Hopkins ME-letter of March 2011 reporting on a recent meeting of the 9th Hemispherx Biopharma Investigators Meeting of March 3-6, 2011. You feel the urge to kill the messengers? Go for it. It's not as though I haven't myself. Just pick your battles and choose your words carefully as to bring meaning and cohesiveness to the people who are seeking answers. And don't assume that everyone knows who you are because you are simply one in a million. My comment may say "anonymous" because I don't get what the other choices are nor how to "do it". I'm a nurse, not a computer whiz.
    A fellow warrioress, Souljourn.

  24. >With regard to Ampligen. I first took Ampligen in 1997 under the AMP 511 protocol (cost recovery). I would simply like to add a positive experience to your mix. It was a miracle for me along with most of the others in the infusion room. I was there, I watched it, I experienced it. All the negativity throughout the years is terribly upsetting. No, it's NOT a cure, although it's a terrific "bandaid". I'm getting the drug once again as I've relapsed, but never to the point I was "pre-AMP). I've heard all the negative comments and spoken with many of those patients from other sites. I am a Peterson patient and he seems to have tremendous success with it, more than most others?
    It appears dosage and drip rate AND a physician who KNOWS how to administer the drug and to whom are huge factors.

    I truly appreciate your honesty and communication with patients. You have tremendous courage to put yourself "out there".
    I'm sure it's difficult.

    There are many Ampligen patients who refuse to make further comments as they were bombarded in the past and it became ugly, too ugly. One group in particular made our lives miserable with the name calling. This became a political nightmare as you well know, but also a matter of $'s with the stock market and short sellers. Shameful! We tried to tell our stories and were smacked in the face, over and over. I wish you knew or could hear from all the responders – there are a lot of them. We desperately want this drug approved, not just for us, but all the others who deserve access.

    Best to you,
    Linda Barossi

  25. >Linda,

    I have long been under the suspicion that amp is a bandaid and not a cure. People (like yourself) relapse after the drug, although not to "pre-amp", but enough to make the 20k price tag a year very questionable.

    If amp were approved, this would be a different story. It is a matter of costs versus benefits, as I have outlined in this public spreadsheet here https://spreadsheets.google.com/ccc?key=0AllDPaztxjQDdDNwa1JDU3hfYUx6dXUwbXJFQmtFV1E&hl=en#

    I will say that if amp were approved and I could get it for 5k a year, I would be on it. Hell, I might combine it with gcmaf just because together they would cost 10k and I believe they could be complementary immunotherapies. In my opinion, anything that boosts NK cells is a worthwhile therapy. Anything that boosts macrophages is a worthwhile therapy. The matter is not whether it's worthwhile period, but rather what it is worth relative to the price tag.

    I believe the price tag is what people consider "ugly", not the varied responses to the drugs and certainly not the drug itself

    – Joey

  26. >Hi Linda.
    Remember when we sat in your car next to Dr Peterson's office and compared notes?

    (That was the ampligen study I had been approved for)
    Yes, ampligen is a worthwhile experiment, but is that to say that mine is not?

    At the time Dr Peterson explained the rationale for its use, HHV6A was the prime target.
    It seemed odd that an drug which was highly effective had such slow results, and over time, HHV6A almost seemed to "leave the equation" and the emphasis for its use switched more and more to "immune modulator"

    Anyway, Linda, I know enough of your history regarding the "M" substance to know that you could say a great deal upon this matter…
    if you wanted to.

    Why not? If it's true, then it's a clue!

  27. >Hi Marcie.

    If I say who I am in every post, people get upset at my "arrogance" and accuse me of "throwing your weight around"

    It's a real conundrum.
    If I don't say who I am, my opinion can be dismissed as "irrelevant".
    But if I do, then it can be dismissed as "arrogant".

    This is me.

  28. >Erik, here are a few of your posts that I found very difficult to understand what point you were trying to make.

    "Now bear in mind, "changeable demyelinating disease".
    If that "change" corresponded to an shift in location, it would suggest that viral factors are not working alone.
    There would be an environmental component too!

    Does anyone want to look to see what it might be? "
    – – – – – – – – – – – – – – – – –
    Are you saying that the symptoms change because the patient is in a different geographical location? What about people who don't move around and still have changes? It sounds like you have a specific idea about that environmental component, yet you refrain from mentioning it. I find that frustrating, because it feels like you are witholding information or ideas. If I misunderstood this, my apologies.


    "If one thinks of the "Definition as the disease", then we don't have our own syndrome.

    We aren't any any kind of CFS-subset at all.

    Not unless one thinks of the DISEASE as being CFS. "
    – – – – – – – – – – – – – – – – –
    Sorry, dude, this is confusing. Are you saying we do have CFS or we don't have CFS? I feel like I'm looking at the Magritte painting of a pipe that says "This is not a pipe." Confusing! It would help me a lot if you would clearly say what you think we do have.


    "But when I told him what I was doing about it, he reacted with stunned disbelief."
    – – – – – – – – – – – – – – – – –
    It would have been really helpful to know exactly what you said you were doing about it, and specifically what stunned Dr. Ryll so much. Were his objections valid and reasonable, or emotional and irrational?


    "I saw "Clark Kent Mold" take off his dorky glasses and turn into Supermold.

    Mild mannered mold, for a short time, could leap tall buildings with a single bound, and as told in Dr Shoemaker's book, Surviving Mold… "Up in the air. It's a bird, it's a plane… no, it's a Hang Glider, getting hit by Supermold"

    It was amazing. And as soon is the deed was done, Supermold put on his dorky glasses and turned back into meek and mild mannered mold, so nobody recognized him.
    It was the perfect disguise.
    Hidden in plain sight. "
    – – – – – – – – – – – – – – – – –
    Is this black mold specifically or any and all mold? How does this mold (whichever one it is) turn from mild mannered to supermold? What is going on?

    Dude, you've been through a lot and it seems you have a lot to contribute to the discussion. I just wish I didn't have to struggle so much to understand your points better. Some of your statements lack a context to help make them better understood. You may have told your full story in a blog or something somewhere else on the Internet, but not everyone here is going to know it. You may have to include some "backstory" to help us out.

  29. >Grant:

    There is a book that Lisa has offered to give to anyone truly interested in what Erik is saying. It consists of things Erik has said in the past. I found it eminently readable, despite sometimes sharing your confusion toward what Erik has posted elsewhere.

    Here is a concise summary of what Erik communicated in his book (and I believe this summary has earned his endorsement):

    "I definitely got that impression from reading the book that you weren't saying "CFS is caused by mold." If anyone gets that impression from you, they didn't read the book. Period.

    You were very clear on that point. You were also very clear on your point that avoiding mold made all the difference. Those of us that choose to explore this should also be very clear in the difference between these two conclusions and stop presuming that anyone is saying "mold causes cfs." You were certainly clear that you wouldn't be surprised if the following events preceded full-blown CFS, and not in any necessary order:

    1) genetic predisposition to reactivity from mold toxins +
    2) exposure to fill_in_the_blank infection +
    3) exposure to the mold toxins

    Even then, you expressed this as a possibility and not even your hypothesis on the cause. The only thing you seemed to insist on was that

    1) you (and other patients with your guidance) recovered by doing extreme avoidance when Peterson was telling you to do ampligen +
    2) researchers and physicians should look into why you recovered."


    Another Thought…..modern….

    The entire premise and tactical objective is to get "In and out" with as little dispruption to offense as possible.

    If you are catching Flak…you are on the Defense.

    For Strategic and tactical maneuvers….offense gets the win.


  31. >Hi Erik:

    Yes, I remember ALL of it. AND, yes, my relapse was caused by that "mold house" that I had built and had no idea that it had standing water underneath for many months and the damage was done. I was financially unable to move, couldn't manage two payments and was flat broke.
    Dr. Peterson knew the circumstances and told me to move IMMEDIATELY. I had no choice. I've told this story hundreds of times and simply can't "go there" again. It was a disaster in my life that no one could possibly comprehend and I choose not to live in the past, I cannot, I'd be reliving a nightmare and I can't look back! I then ended up penniless in New Orleans with my sister and found the mold there to be intolerable as well.

    I agree, Dr. Peterson agrees…….MOLD is the enemy! Enough……we all know, I think?, that it's harmful. I had another mold experience in a cheap little apartment and had to move within months. I've been on the run from mold for years. I'm AWARE! People think I'm crazy when I make such a fuss about mold. Whatever. My job is to stay away from the damn stuff, period.
    I don't believe that mold is the root cause of my illness. In my case it was not. There are many things that make us relapse or contribute to a worsening condition. I don't find it necessary to constantly yammer on and on about all of them. Anyone who is at all "informed", as we all should be, of what's going on with our bodies, should have already read about it?

    I was extremely involved in the 511 from mid 1996. We hoped I'd be on Ampligen by that Christmas and as it turned out, it was a year later. There were only 5 slots available and I knew each person, at at least I knew the names and Jerry Crum was to be one of them. It was too late for Jerry. Very sad. I wasn't aware you were involved and have seen you speak of it many times? I knew most of the next group as well. Everyone was in preparation for many months, over a year actually.

    I personally know two people, one from the first 5 and one from the second group who have gone on to a "well" life. Amazing! Their "bandaid" has lasted all these years.

    In response to the people who continue to discuss the amount of money involved in Ampligen treatment, I must comment. My insurance paid every cent of it last time. This time a family member is paying for the drug which amounts to $7,200 per year and the infusion costs (of which Dr. Peterson is clearly not making money), are covered by insurance, as well as the labs. My insurance even reimbursed me for the labs in Belgium (years ago when our testing was done there). Where are people coming up with these enormous amounts of money? Yes, I only require 1/2 dose of Ampligen, which clearly reduces the cost of the drug. Many of us don't tolerate the full dose………some do, some don't. I personally do extremely well on less than 1/2 dose and the outcome is the same. For me, MORE is not better.

    A "bandaid" is very acceptable to me. I've had many good years and treasure them. To regain the ability to go back to work and be productive AND a real life is the most important thing to me. If treatment gives me 5 years, I'm thrilled. Perhaps they will come up with some kind of "maintenance dosing" – every few years? In the interim, I'm hoping to buy time and firmly believe that Ampligen, in conjunction with some other medication will turn out to be the ticket. If we do have a retrovirus, there is no cure, just back to "bandaids". Anything that makes us feel better and more able to LIVE is a HUGE relief and something to look forward to. I'll take whatever I can get and was never disappointed with the Ampligen results.


  32. >Linda, Dr Peterson tried to get me into the fully funded study because, as he told me, "You are a member of the original cohort".

    But I never had a chance of coming up with the money for the cost recovery program.
    Extreme Avoidance was all the option I had left.

    I didn't claim that mold was the root cause of the illness, nor do I propose anywhere that everyone should undertake avoidance strategies.

    But those of us who pointed at mold during the 1980's were called stupid, ignorant and exaggerating for claiming that it was doing something really bad.
    Now, people are trying to tell us that we are stupid for saying something that everyone knows about.
    Nowadays, our assertions of mold go from being "Obviously stupid" to "Stupidly obvious" from one person to the next.

    Did you see Janet Dauble's website about those of us who did crazy things like living in a remote cabin, or like Jesse Ventura's wife going to Baja for six months out of the year to recover?

    If so many of us can go that extra step, and get results like that… WITHOUT ampligen, it seems that there must be a few people who might jump at this concept, if only they knew that such a thing was possible.

    Still, regardless of what people choose to do, this stuff was present at Ground Zero for CFS, so CFS researchers really have no right to refuse to ressearch this factor.
    It reflects poorly upon them as researchers to ignore this variable, no matter what the cause of CFS is.

  33. >Linda,

    You are lucky to be able to get half the dosage. I am a Peterson patient too, so I understand the privileges that come with being his patient. Not all of the open label trials are offering this half dose. At the full dose, the costs for the drug are 2x what you mentioned = $14,400.

    The administration costs without any insurance coverage = $9,506. You are also very lucky to get insurance coverage for all the administration costs. Not all the other physicians heading open label trials have been as successful getting coverage for their patients.

    So even if we discount the admin costs, it's still $14,400 just for the drug at all the other locations.

  34. >Grant, have you read Osler's Web?

    The CFS definition was a contrivance to intentionally minimize the disease.
    When the Holmes committee did this, they had been fighting with Dr Cheney/Peterson to literally exclude the this very group from "being CFS", yet THIS was the group which had the evidence which was causing the creation of a new syndrome.

    So the definition omitted all the real evidence.
    To know what CFS is, one has to look past the omissions and study the illness that was under scrutiny.

    Part of "what got left out" was a strange enviromental sensitivity.
    It was this, that I refer to, when I say Dr Ryll reacted with stunned disbelief.
    He knew that his patients had trouble with "Sick Buildings" but attributed it to chemicals. He hadn't considered "Toxic Mold".

    There seems to be a good reason for this.
    Dr Shoemaker's new book "Surviving Mold" describes a recent mutation that could be responsible for mold doing something that people don't recognize, because they've never seen mold do anything like this before.

  35. >Wow.

    I consider myself the luckiest guy in the world to have witnessed this weird "effect" so that I would KNOW there WAS some other crazy thing that I could try, while waiting for the magic bullet.

    (Not that anyone else should.
    As people say, "That's just YOU".

    OK, then…. it's just me!)

  36. >I am pleased to have Erik explain where he is coming from. Now it makes sense to me. I suspect that black mold is an issue for most of us. Not necessarily a cause, but a problem. And Itt is hard to run from. I have had homes slightly infested in desert areas and of course in the Northwest which seems to be a mold resort–not a resort from mold. All we can do is learn and be wary. Avoidance and lemon oil cleaners. Marilyn

  37. >I like Jamie, so my comments are not coming from antagonism.
    I disagree with the negative attitude toward Ampligen, I have an open mind on the Ampligen research. I want to find out if it is helpful to my ME/CFS patients, a large number on the East Coast have expressed interest, that is why I joined Dan Peterson, Charles Lapp, Lucinda Bateman and Nancy Klimas in the Ampligen Trial. I dislike the Hemispherx recovery charge for the trial, but the company is small and cannot proceed without it.
    We do not know the mechanism of action of Ampligen, Some patients previously treated with Ampligen reacted well and their condition improved, but we are also faced with a percentage of patients who did not react positively. Why was this difference in patient reaction ? Is it as Erik and Linda suggest that there is a superimposed condition. Is it the Superimposition of a genome difference as suggested in our papers ( Jonathan R. Kerr, Robert Petty, Beverley Burke, John Gough, David Fear, Lindsey I. Sinclair, Derek L. Mattey, Selwyn C.M. Richards, Jane Montgomery, Don A. Baldwin, Paul Kellam, Tim J. Harrison, George E. Griffin, Janice Main, Derek Enlander, David J. Nutt, Stephen T. Holgate, Gene expression subtypes in patients with chronic fatigue syndrome/myalgic encephalomyelitis Journal of Infectious Diseases 2008;197(8): 1171-1184 …..Zhang Lihan; Gough John; Christmas David; Mattey Derek L; Richards Selwyn C M; Main Janice; Enlander Derek; Honeybourne David; Ayres Jon G; Nutt David J; Kerr Jonathan R Microbial infections in eight genomic subtypes of chronic fatigue syndrome/myalgic encephalomyelitis. Journal of clinical pathology 2010;63(2):156-64..) A genetic predisposition may be responsible.
    Alternatively it might conceivably be the superimposition on the immune system of a toxic mold or a new or old virus, as researched by Mikovits , Ablashi, Montoya, Ramsey and others… references follow.
    Kogelnik AM, Loomis K, Hoegh-Petersen M, Rosso F, Hischier C, Montoya JG. Use of valganciclovir in patients with elevated antibody titers against Human Herpesvirus-6 (HHV-6) and Epstein-Barr Virus (EBV) who were experiencing central nervous system dysfunction including long-standing fatigue. J Clin Virol. 2006 Dec;37 Suppl 1:S33-8
    Ablashi DV, Eastman HB, Owen CB, Roman MM, Friedman J, Zabriskie JB, Peterson DL, Pearson GR, Whitman JE Frequent HHV-6 reactivation in multiple sclerosis (MS) and chronic fatigue syndrome (CFS) patients. J Clin Virol. 2000 May;16(3):179-91.
    Vincent C. Lombardi1,*, Francis W. Ruscetti2,Jaydip Das Gupta3, Max A. Pfost1,Kathryn S. Hagen1, Daniel L. Peterson1, Sandra K. Ruscetti4 Rachel K. Bagni5, Cari Petrow-Sadowski6, Bert Gold2, Michael Dean2, Robert H. Silverman3 and Judy A. Mikovits1,
    Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome Science 23 Oct 2009: Vol. 326 no. 5952 pp. 585-589
    Ramsay AM.. Postviral fatigue syndrome: the saga of Royal Free disease. . London: Gower Medical, 1986.
    This brings me to the latter reference, Ramsay wrote the first modern description of Myalgic Encephalomyelitis related to an outbreak in London on 1955, his book Post Viral fatigue was printed years later. With all due respects to Erik, the Incline Village outbreak was not a new disease, but an unrecognized disease due to the absence of a medical library in Incline Village and the ineptitude of the CDC in tracking reference to Ramsay's work.

    Derek Enlander MD
    New York

  38. >Dr Enlander, I did not propose that the Incline outbreak was a new disease, but rather, a collated refinement of evidence which was the linchpin that doomed CEBV Syndrome and called for the creation of an investigate "research tool" to describe it.
    The "Royal Free disease" or "ME" was known to the Holmes committee, and "Myalgic Encephalomyelitis" was one of the names that was under consideration.
    Dr Peterson had sent blood to the Gallo lab to test for the newly discovered HBLV. Ours was the first discrete "grouping" outside of HIV AIDS to have a strong association with this virus.
    This alone could have been reason enough for the Holmes committee to defer applying "ME" to the Raggedy Ann Disease, for that would be "reverse engineering" a new virus onto an entity that had not been tested for this virus.
    There were other reasons the Holmes committee did not want to use ME, but one is all it takes.
    But here is another. They thought it might be something else.
    Hasn't anyone wondered, if the illness is so benign and easily ignored, HOW the Tahoe outbreak made national headlines and scared the pants off everybody?
    Paralyzing the local economy, getting everyone in an uproar.. does that sound like little ol' "CFS"? A vague fatigue disorder?
    No, that's not what people were afraid of.
    They thought we had something quite fearsome.
    This is why Gary Holmes thought it might be a terrible "rogue strain" of EBV, this lady had passed through Truckee, where the "weird flu" started, as she left behind a trail of "Contagious Cancer":


  39. >Dr. Deckoff-Jones,

    Thanks for your response to my posts. It's good to hear your thoughts.

  40. >I am describing it exactly as the story is laid out in Osler's Web.

    If people find this objectionable, distasteful, irrelevant or just plain aren't interested, then just exactly whose side are they on, and what is meant by "working together" and "cooperation"?

    With whom? About what?

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