Life’s A Long Song

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It’s been a very strange and unusual three years. The Lipkin study was the closing of the door opened by the Science paper in October 2009. For me, the shift from thinking about neuroborreliosis to retroviral causation for ME/CFS led to clinical decisions that have resulted in great improvement for both Ali and me. We are not well, but we are both leading full and meaningful lives, within the confines of illness. Existing within the confines of illness means the same thing for us that it does for other people with disabilities who need accommodations. It does not mean trapped in endless suffering with no help in sight. Prior to the fall of 2009, Ali and I spent a few really grim years couch bound together, wondering if a quick merciful end wouldn’t be a good thing. Now we are working and going to school. We are even playing some. We need to do it “our way”, but it is happening.

My personal journey through the world of XMRV was littered with betrayal and abandonment, so in a sense, I’m glad that part of it is over. I’m left to practice medicine much as I did before, but with new insight. Three years of reading retrovirology has changed my view of many things, medical, scientific and political. I’m in Hawaii right now treating two young ME women. Much of what I’m doing is a refinement of what I did in my last practice a decade ago. My own emotional adjustment to the collapse of the science involves accepting that the tools I have now are all there is likely to be for a long time. There isn’t going to be a cure and it is a long way off before conventional medicine has anything better to offer than what’s listed on the Mayo Clinic site: sleep meds and antidepressants, which many of us don’t tolerate.  Not even pain meds or anxiolytics. Exercise and therapy, because we are so overly focused on our symptoms. Back on the trash heap.

So where’s the redemption in this story that makes it worth writing about? ME, or ME/CFS, or CFIDS (since I’m a lumper, not a splitter) is a relapsing, remitting illness. It can be coaxed into remission. Remission doesn’t mean normal or healthy. It means not suffering so much. It is a process of encouraging healing and discouraging inflammation, requiring a gentle, multi-pronged approach that relies on synergy, tinkering and luck. Find some maneuvering room, a key for the lock. It is possible to stop the downward spiral, tip the balance and start the slow climb out. Unfortunately, there is never a uniform response to a given therapy with this illness, so treatment can’t be formulaic. When recovery does start, it is slow and fragile. It must be nurtured and it takes years, that from personal experience, since I have only been back in practice for a little over a year. Although, I have heard of spontaneous recoveries many years in, most involve hard work and careful choices. One thing I know for sure. There was never a patient population less suited to medical heroics.

Meanwhile, I sit here in the weird position of being better and still apparently improving on Viread for 2 1/2 years. I was so bad 4 years ago, nobody expected me to do anything productive ever again. Ask my ex-Lyme doc. I had a sleep disorder to rival any of my readers and I know some of you have pretty spectacular sleep problems. I now sleep normally. Even normal dreaming has returned in the last 6 months or so. My gut is also functioning normally on a modified SCD diet, 6 years after emergency surgery for a small bowel obstruction and a Crohn’s diagnosis. My intractable peripheral neuropathy pain, which once required opiates, is now little more than background noise except at the worst moments. PEM is reduced, but still problematic. I can exercise a little, being careful not to overdo, because it feels good in the moment. I won’t list Ali’s symptoms, but she is similarly improved on Viread and Isentress. Her horizons are ever expanding, her illness less and less restrictive. Have we done other things at the same time? Yes. Will antiretrovirals for ME/CFS be studied at all? Not a chance. Our government just spent a couple of million dollars to ensure that ideas like mine stay marginalized.

Dr. Lipkin was quoted on the IMEA FaceBook page in response to questions about whether any “positives” were found, “The investigators reported results as positive or negative according to their own criteria. The only requirement was that once criteria were established results could not be changed through modifications in criteria. I know this is not the intention of those who continue to pose these questions; nonetheless, the impact of this continued challenge to work of the team is that some people in the scientific community who might contribute are becoming reluctant to work on CFS/ME.” Yet, at the press conference, he encouraged us to advocate for ourselves more effectively. So we need to ACT UP, but be nice about it. Any ideas? We are a group in desperate need of effective advocacy. It’s not only the middle aged going down. There is a tidal wave of young people. They are not as visible as their autistic cousins, but just as profoundly disabled. Who is going to care for them when their parents are gone? We need to start advocating for them effectively now.

Life’s A Long Song by Jethro Tull

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30 thoughts on “Life’s A Long Song”

  1. Way to go Dr Jamie !!! You can count me in ! I have been ready to act up,for a long time now. (not always the body tho :)
    I am so proud of you, for making a ‘stand here’……Thank you & w/ many Blessing’s~~ in & for….. “Acting Up” xx

  2. To me, it is critical for us to understand that Emily Collingridge started out as a mild sufferer.

    She progressed from mild to death.

    ===

    If we understand that, then we understand:

    The fact that progressive nature exists (complacency kills)

    The fact that mild exist (they are not only “tired people”)

    The fact that very severe exist (science needs them)

    The fact that deaths exist

    ===

    If we do not understand those things, then we do not understand why it is a scandal that the Lipkin samples include no housebound or bedridden.

    And we do not understand how counterproductive it is to alienate mild sufferers. Educate them, but don’t exclude them.

    And we forget to mention those who are very severe (they are not online).

    And we do not understand that the IACFS/ME primer will kill people with its exercise recommendations (and its claim that opportunistic infections are not a problem).

    And we do not understand the need for nondenialist definitions.

    And we perpetuate schisms on etiology theories.

    And we do not understand how urgently to advocate.

    ===

    I have had it with being nice. We need results now or many or most readers of this blog will die from the disease decades before adequate treatment is available. Now is the time.

    There are more things to do than there are people. My most recent post proposes a tiny website. Will we have enough people to even create it?

    Therefore, I don’t think it’s a matter of what to do — IMO we need to carefully inform and massively recruit advocates into the movement. Mild sufferers and healthy supporters included. Just make sure they profoundly understand the important facts — understand them in their bones.

    • Count me in. I’m a mild sufferer but I know advocacy. And I understand fully as my whole family is sick and some have already died. I can help with a website as I have more energy than many. And I will use my energy to help fight for us all. We need research and treatment and we need it now! I am feeling better with what I’ve been using but it is not a cure. I’ve had it 18 years and I doubt I’ll last many more without something to stop the progression. And eventually it does.

    • I agree, but do not know what to do. This Lipkin study was done very carefully to sap the strength out of the community. The sense of betrayal is huge again.

      The problem is that some of the patient community now wants to shut up anyone who speaks out against this set-up study by Lipkin. I see them being banned and moderated on forums that once stood by the effort to find out the truth of this illness.

      What tiny website are you speaking about, Samuel?

      I

  3. Agree on ACT UP and mention ADAPT, too!

    But, Dr. Jamie, I want to address the value of your “old-fashioned,” basic, gentle, low-risk treatments, too. You’ve said it before on your blog — about the importance of “weller.”

    Any smidgen of less pain and suffering is GOOD. And it appears that finding that smidgen gives you the info to capitalize on it and smidge more. Smidges here, smidges there, months go by, and all of a sudden, we notice how the smidges have added up to make a real life difference. You’ve only been at this a year with my daughter. But there’s no way she could have ever survived the move we made, let alone the interim months of visiting family during the transition, before the smidgen improvements (which now are substantive) from your treatments. She was much too fragile before to even contemplate making the kinds of huge disruptive changes we’ve made in the past 6 months. What you’re doing is not a cure, it’s not a magic bullet, but it’s been adding up and continues to move ahead, a smidge at a time. Is a year of treatment too slow? Or is any improvement worth whatever time it takes to see it, no matter how long it takes to become noticeable? That was a straw man question for me. Before we started seeing you, my daughter was so miserable that any smidge has been worth anything. To watch her continuing on an upward trajectory, no matter how slow, vs the frightening downward path she was on, is invaluable. Like you said in your blog today, it’s not a cure — but it’s adding up to a tolerable life, which is huge.

    And, in reality, you haven’t been at this long enough to know whether it might lead to a “real life” after 4-5 or 6-7 or 10+ years of these treatments, or if we’re peaked out already. I seriously doubt we’re even close to being peaked out. The N is so very small. But, damn! What you’ve done for my daughter already is huge. It’s not perfect, she’s not even close to being as functional as Ali or you yet, but she’s also not anywhere near as intolerably miserable, heading down, as she was 12.5 months ago when we first came to see you.

    Oxygen, Deplin, hormone tweaks, the hyperbaric here, neurofeedback there, paying attention to and treating other underlying awfulness (you know, all that gastro stuff). It’s adding up. Slowly, but surely.

    No magic bullets, but smidgen improvements. We like this. Don’t stop.

    • Val, I am so glad your daughter is improving slowly. This disease can be so intolerable that any improvements are welcome. I hope she continues to get better.

      Warm regards, Ann

  4. Thanks for posting your blog, Jamie. We don’t have many people left who will speak up against this betrayal known as the Lipkin study. I hope there are a lot who feel it, but are just too scared to speak out.

    I am glad you and your daughter are better. Some good things have come from the huge debacle known as xmrv.

  6. Good post. Am very glad that you and Ali are improved.
    Although I am not a pessimist, I do look back at stamina I had years ago and see that I can’t do what I used to do, even when I had this disease. I realize that I haven’t been able to get a mammogram, get my eyes checked, or see the dentist, as I do not have the energy.
    I don’t know how one takes care of medical and dental necessities like tests and appointments.
    I take acyclovir but don’t see it helping the ME/CFS symptoms at all.
    The sleep situation for me is absurd. I haven’t had a good night’s sleep in at least two weeks. It’s allergy season; my body is in super-alert mode, ready to fight that pesky pollen or weed or mold at any time, just cannot relax and sleep — and the medications seem not to be working.

    • Kathy D.

      Thank you for your comment. I can relate to many issues you talk about.

      You may want to check out NeuroProtek if you haven’t already. I’ve been on NeuroProtek (Algonot.com) for about 2 yrs. It’s all natural (contains Luteolin, Quercetin, & Rutin) and inhibits mast cells. It was initially developed for people with Autism but purportedly helps all the neuroimmune illnesses since we all suffer with inflammation. It’s no cure; but it has decreased my pain/inflammation, helped with sleep, cut my dependence on ibuprofen by at least 60%, and stabilized my mood. It took about 6 weeks to kick in initially. Hope this helps.

  7. Dr. Jamie, I was hoping some one else would post helpful info you haven’t heard before. In case it’s of help, I’ll mention again that it appears a large % of ME/FMS people are very well when in certain locations. While Hawaii and south west US are above average, I hear the best feedback from
    the Caribbean. It’s too bad it doens’t help all ME /FMS people, but it’s helped
    most of the ones I’ve heard from.
    In the majority of those cases, the patients actually went into remission during their time there. I experienced this personally, I’ve heard it from people I’ve met and from people online. In most cases, the remission came almost immediately and unexpectedly. It didn’t seem to depend on lifestyle, food, water, stress, suppplements – simply the location.
    None of you know me, so I recommend if you’re sceptical but interested, please ask ME or FMS patients who’ve been to the Caribbean since becoming ill (in a manner so they don’t worry their disability benefits are at risk), how they felt in the Caribbean. I try to get them to be specific and most say they were well enough to lead more or less normal lives there.
    I hope this info might help some of you, and that Dr. Jamie and her daughter will feel healthier soon !

    • Paul, specifically where in the Caribbean have these patients stayed? Were they brazen enough and able to quit all of their sleep meds?

      Also, Dr. JDJ, you said you had epic sleep problems that have all but abated on Viread. Were you taking sleep meds before, if so, which ones, and have you completely weaned, if you don’t mind my asking?

      • Actually, the “well” area for numerous patients is anywhere close to tropical seas. Some are well in Bahamas, but just further south seems more reliable.
        It can even be near the south shore of the Gulf of Mexico – or the Pacific side of that area. Far inland and mountains, even in that part of the world, don’t
        seem to work for as many people.
        But, if the effect works for some one, it doesn’t matter much which part of the
        Caribbean area, as long as they aren’t too far north.
        I don’t know specifically whether many patients stopped their sleep meds. I had several people mention they slept better and at least one said he didn’t need his sleep meds.

  9. Well, I am new here but I still want to have hope. Based on what I am reading, I feel very discouraged. I am almost 24/7 x 6 yrs on my back with the laptop on my chest. Realizing the neglect and downright criminality ignoring or twisting ME in the governments and medical ‘profession,’ I realize now how unlikely it is for me to get better. I am one of the severe cases and watching myself slide further down the hill. But part of my brain still works, and my fingers….

  10. Hi Jamie,
    I left a question on an earlier blog, asking you and Dr Snyderman whether you thought it possible that the antiretrovirals you take could be helping you both because of their immunomodulatory properties. This could tie in with the rrituximab findings. Could you comment, please?

  11. It seems like the Lipkin study had the same problem as other studies on ME/CFS. It didn’t know who it was studying.

    The only thing I advocate for is to find subgroups in the group of illnesses called CFS. Unless these are established, I believe all research is futile.

    On a sidenote: I really enjoyed reading your intro into ME/CFS at the beginning of this post, Jamie. It shows that you know the condition very well.

  12. Jamie,
    Thanks so much for creating this blog, and continuing to persevere. I want to express my deepest heartfelt thanks for getting us started with Neurofeedback for my daughter, Anna (now Violet). She spent many years seizure free, with improved cognition. You have been such a blessing to so many.

    Unfortunately, about two years ago she was apparently bitten by a tick that went undiscovered, resulting in a sore that wouldn’t heal (in a not-so-obvious place). Symptoms began to follow (never a classic EM rash), and it took several MDs before it was taken seriously enough for Elisa and Western Blot. She is now on 3 antibiotics and a dozen or so “supports”, and the Bartonella rash seems to be responding.

    Reading your blog and having followed the efforts of many doctors and academics on the complex response of our bodies, once “triggered”, to a variety of toxins, bacteria, mycoplasma and viruses (frequently in combination, as is the typical case with a tick byte), several things seem to come into focus.

    The issues are complex from the standpoints of 1) symptom diversity, 2) causality diversity, 3) immune response (and related genes and gene expression), 4) neurological response, 5) treatment response, and yes, political/”medical” atmosphere and, as always, behind covering. And probably a lot more…

    There are a few things I have come across that have begun to shed some light and provide hope for some people. One is the study of the effects certain organisms have on the Vitamin-D Receptor molecule, and its impact on the complement portion of our immune system (esp. Th1), and the ability of certain substances to block or reverse that action. Relatively recent results have been published from the administration of amazingly small quantities of GcMAF, both in the areas of cancer recovery, and in some other diseases of unidentified etiology, including some ME/CFS. This action may possibly be related to the action of olmesartan on the VDR observed by Prof. Marshall, but my biochemistry was never that strong…

    I’ve also noticed that GcMAF has sometimes at least resulted in dramatic improvements in autistic individuals. (gcmaf.eu) Almost certainly unrelated in action, I’ve also recently run across a report of something as seemingly far out as MMS having a huge positive impact with many kids with Autism. http://www.autismone.org/content/38-children-recovered-20-months-mms-0

    Note: Dr. Dietrich Klinghardt has publicly expressed the (more than a) suspicion of a connection between Lyme and Autism in a recent talk on HPU/KPU and Lyme. http://www.youtube.com/watch?v=9yx-WcBv-oY

    It begins to make us aware that prolonged immune activation (including from external stress) can have a devastating effect on the internal functioning and balance of our bodies (VIP, Zn, Mg), in addition to the often devastating external effects. Mycoplasmas, l-form/CWD bacteria and viruses generally hide out within our cells, making access difficult.

    As more and more individuals and healthcare professionals try different approaches, and carefully document the results in a way that is accessible, I think we will begin to flesh out a more and more complete picture. Careful cytokine testing coupled with genetics testing will help to complete the picture.

    While it is hard to both zoom in to the details of biology and individual immune response, and zoom out to the broader picture of so many people now coming down with illnesses with fairly diverse but apparently related symptoms, it seems the real clues may be more obvious when we can integrate the big picture with the microscopic (and sub-microscopic). Many issues may end up being a combination of organisms (both added and missing) and conditions, causing unique immune responses, and our system’s responses (or lack of adequate response) ultimately related, at least in significant part, to the foods we consume and their sourcing.

    It’s unclear why so many people are beginning to recognize gluten sensitivities, with its attendant allergy/immune response and nutritional issues. Annessa Brockley in Autoimmune: The Cause and The Cure, has some well-researched rationale and food-related suggestions which appear to have helped many people. Her notion: food supplies have changed, especially in two areas: cattle feeding, pasturization and fermented foods, leading to an insufficiency of some bacteria and proteases which may be useful internally to a) disassemble the results of some immune system actions, and b) to break through some biofilms that prevent immune or antibiotic/antiviral access. The book is about to be updated. There are many blogs…

    Apologies for the long-windedness – it was hard to know when to stop…

    A lot of this fits with what many of you have been saying.

    Warm regards.

  13. compassionandchoices.com

    Merciful end for those clinically diagnosed with retrovirus, but whose liver can’t handle antiretrovirals.

    For those clinically diagnosed with retrovirus , alone and penniliess.

    Let God be the harvester, not …

  14. “Stop eating and drinking”…is a legal choice in all 50 states.

    Even the mild category of clinically diagnosed ME/cfs patients pass very quickly when the stop eating and drinking.

    Details on compassionandchoices.com

    Thankyou Dr. Jamie for joining this evolutionary cutting edge.

    Let Great Creator be the Harvester, not the Destroyers…

  15. Hi Dr. Jamie and friends :) My journey thru the Methodist Richardson Cancer Center in beautiful suburban Dallas continues. I have had three of scheduled four Medonx treatments, the poison they put into my blood to kill Cancer. Today I see my ENT Dr. Later this morning, I will have Radonx treatment number eight, of thirty three. Radiation treatment kills Cancer at a specific point in my throat, to complement the chemo treatment that attacks my entire body. Anyway, it is November, 2012 and my car has a fresh license plate and I am ready for another year of living horizontally. Cancer has not cured my CFS like pile of symptoms. Treatments seems to be killing the lump of Cancer in my throat. My ability to drive to the treatments is a great joy. I let my kids take me for the first few weeks, when the preCancer treatment required me to get a PowerPort put into my chest, for chemo, and a feeding tube put in my stomach, for later stages of radiation damage to my throat, and twenty nine teeth extracted to avoid bone necrosis. I had abandoned dental survival when I first got ill, in 1997. It paid off. Now I have no teeth ;) Anyway, I shall muddle through Cancer and hope that life continues to carry on, with me and without me. Humans are only humans. We do the best we can, but, we do not know everything, nor can we. We know we can only do the best we can and hope some of us survive our current dilemmas. They are several… sigh. I have been watching NYC survive the rotten weather. Life is hard work, even if you are too weak to notice, much ;)

    I understand some folks think they must champion our CFS as a real big deal in this world. We each have real big deals. Many of them kill us. Do not feel threatened, something kills everybody. It is not compassionate, but, it is absolutely fair. Sigh. I am not in bed because of the failure of the human race, just this human body. It was better, for half a century. It was never perfect, nor will anyone ever be. But, some of us were sure vain ;) Let the good times roll.

  16. **Alan Marcy on November 1, 2012 at 5:10 am: ” Alan, I am so sorry u are going thu all of this (I have dealt w/ breast cancer some yrs ago, so I have an idea of u’r struggles.) What a Bright Light, u hold within u !! keep it up,~~ my experience w/ “C”, on top of cfs/me, has made me…… One ~~”Strong Soul” !! (w/ a lot of Faith & humor:) ”

    ” Seaofdiamonds on October 24, 2012 at 12:26 am”….. ” U are not alone….I hear u & I want to to know that what u r hearing here, is the ‘real & truthful deal’ reg our illnesses, and to not loose HOPE. Someday, the REAL Truth, WILL come out & WE are in this together !! ……….” If u are wanted to touch base with an online group on facebook, for some support…..”Clarissa Shepherd w/FELLOW TRAVELERS, Support and Chat ( FMS CFS/ME)” is an awesome,loving, very very supporting group run by Clarissa, who is an Angel, in human form. Maybe I will see u there ( I too, am very severe, so my online time is only mins @ a time…..w/Blessings ((0))

    “Corey on October 26, 2012 at 9:32 pm” ……Thank u for posting this…… ” I’ve also recently run across a report of something as seemingly far out as ** MMS (chlorine dioxide)** having a huge positive impact with many kids with Autism….. http://www.autismone.org/content/38-children-recovered-20-months-mms-0 ”

    Dr Jamie, if able, could u please ck out the “www.autismone” w/ the info reg: “how MMS (chlorine dioxide) has become the “missing piece” to the autism puzzle”.
    I just finishing reading & listening to “Kerri Rivera” w/ http://www.autism.com/
    (in english) & WOW, sounds really interesting……COULD…. this work w CFS/ME ??

    Again, Dr Jamie, thank u sooooo very much for speaking out & allowing the “Truth” to be spoken here.
    I am ready to ” ACT OUT”…..when & where ??
    Blessing’s to ALL here

  17. So today we hear from Mikovits that her XMRV does not exist. I missed the beginning of the program, but did she say that Alter and Lo looked for their virus, or did they look for XMRV? And did she discuss whether storing of frozen blood samples cause the virus or a virus to not be detectable?

  18. If you weren’t listening to the radio broadcast, I called in and got answers. Sadly, they are not answers, just where we are once again – who knows.

    Mikovits said that Lo looked for pMLVs – the same as he did before and did not find any. She said they have no clue how their lab was contaminated. She does not know how her lab was contaminated either.

    She said that, unlike mycoplasma, storing blood samples and even freezing them makes a retrovirus easier to detect. I asked her about Lo’s mycoplasma incognitus which killed six people in their prime of life. She said that mycoplasma was a serious infection.

    One question I wish I had asked: Will Lipkin use his new study method to look for thousands of possible retroviruses in the cfs samples they have? Was that question asked, and was it answered? Enquiring minds want to know.

    I can only add that I am very discouraged and will continue to focus on my own life and writing, as that is all I can do.

    • Hi Paula,

      My recollection (which I hope will be confirmed or corrected) is that they will run NGS which will pick up novel RNA viruses including retroviruses (a curious phrasing).

      While I am very happy to have Lipkin, Judy, and Frank apply their abilities to the disease, and grateful to Judy for providing more details in the interview, I don’t know who is funding what, or to what degree, or what the utilization rate of the NGS machines is, or how much of a priority any of this is to anybody.

      My experience tells me that this deadly pandemic rates less than acne, and will continue to do so until we get serious.

      The perpetual “who knows” status is pissing me off. With funding on science, we would have answers.

      ===

      I believe that there wiill be no progress until WE take action and form a powerful movement.

      The disease is progressive for millions of people.

      To me a real life borne of advocacy beats a pretend life for a few miserable years. I want to be proud that I did what I could.

    • I do believe that Judy has said that some housebound were included in the Science study. I do not have a link however and I could be remembering incorrectly.

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