Aloha

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Some of the responses to Dr. Snyderman’s letter indicated that my introduction was misinterpreted by a few people, so I’d like to clarify. I didn’t say that Dr. Snyderman would be dead by now if he’d not taken arv’s. I said that he would never have gotten a chance to try them if he’d waited for the science to run it’s course, to be given permission to do what he did. His numbers, and  ALC doubling time, suggested that he should be dead about a year from now. The evidence he presented suggest that he has impacted the expected course of the disease, but it is too soon to know if his life has been prolonged. He had no prior treatment for his CLL, because he didn’t like the cost/benefit ratio.

Several people requested references for Dr. Snyderman’s statement that the “supporting data actually goes back to the 1970s. Three different research labs including Robert Gallo’s the co-discoverer of HIV found MLRVs in many different types of lymphoma and leukemia.” Here are references he sent:

I’d like to thank Dr. Hodgson for his considered comments, however I disagree with them in a fundamental way. If you don’t have HIV, you don’t get AIDS.  Period, end of discussion.  The retrovirus is the only meaningful biomarker. There are predictable lab abnormalities once things start to go south, like CD4 depletion, but the presence of the virus is what matters. Similarly, abnormalities of NK cell number and function may occur down the road in ME/CFS, but normal results in no way rule out the disease. Likewise there are cytokine/chemokine abnormalities, but no single signature pattern that defines the disease to the exclusion of other patterns. It would be a serious mistake and disservice to patients everywhere to define the disease narrowly based on either lab tests or symptom combinations. That would be like saying that AIDS patients with pneumocystis pneumonia have the disease, but patients with Kaposi’s sarcoma don’t.

A complicating factor may well be the presence of more than one virus. It seems likely that different combinations of virus(es), genes, types of injury are responsible for the different presentations. It is crucial that the problem be defined in the broadest possible way. There are likely an enormous number of infected people who are a little sick, or not sick at all. These are the people who should be getting the most attention, not excluded from consideration because their NK cell and cytokine profiles are normal. And then there are the uninfected…

I haven’t posted in ten days, and I was on such a roll for a while that I’m getting mail asking if I’m OK. Actually, I seem to be on a slow uphill course again. My sleep is especially improved lately, sleeping all night and even dreaming. The truth is, I’m in Hawaii. I needed to come here for personal reasons, but my husband and I have managed to squeeze in some vacation, our first since New Year’s 2003, when we were all still healthy, even me, relatively speaking. It’s been three years since I’ve been to sea level. I live in Santa Fe, at 7500 feet of elevation. I am much less short of breath with exertion here and hiked in a half a mile to a waterfall yesterday, with no PEM. I am sitting on a stunning beach as I write this. I have even been able to swim a little. My husband is snorkeling. I get little pangs of sadness that I can’t do it with him like I used to, but I am so happy that he can. It is amazing to me that I am here. I lived here when I was a young doctor and always imagined that I would return. I thought my life was over, but it is starting again. Who knows? Maybe the best is yet to come.

Aloha nui loa this beautiful May Day. A hui hou.

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15 thoughts on “Aloha”

  1. >Jamie, so excited to read your personal update!

  2. >I am so glad you are feeling good enough to have a vacation in Hawaii! This is wonderful news. I hope your uphill course continues and you keep feeling better and better.

    Thank you for sharing this update.

    Patricia Carter
    http://www.imeassoc.com

  4. >Hi Jamie! I am so happy to hear you are doing well. I had started to worry about you too. Thanks for posting and reassuring us! And I'm thrilled that you are on the beach in Hawaii. You've come so far in a year, it's amazing.

  6. >I'm really glad you're doing well enough to fly out there and even enjoy being there.

  7. >These references are only a small part of the evidence for retroviral involvement in human disease. All those you list appear to have been found by hybridization prior to the invention of PCR. This was hugely controversial at the time.

    When PCR appeared, it offered a powerful tool for amplifying very specific sequences. This caused earlier work involving hybridization to be denigrated as sloppy. Many reports were consigned to the dustbin of rumor viruses. This may have a bearing not only here, but on the entire field of autoimmune disorders, where progress since has been meager. The period in question covers the entire professional career of many current experts.

    In truth, there is no law of nature requiring great sequence stability in pathogens, and considerable evidence to the contrary. This is not so much a matter of good or bad science as convenient science which avoids criticism.

    anciendaze

  8. >My experience in traveling around the continental U.S. is that altitude has nothing to do with how I feel.

    I did terrific hiking at Rocky Mountain National Park (10,000 feet). I also did terrific hiking at Death Valley National Park (-180 feet).

    I did terrible in Santa Fe. After a few days there, I recovered by spending time in Pagosa Springs (at the same altitude just over the Colorado border), where I felt great.

    And a short trip to Lake Tahoe made me more sick than anyone without this disease could imagine feeling.

    People with ME/CFS often do much better in some geographic locations than in others. Provided that they didn't bring along a lot of contaminated belongings and aren't staying in a moldy place, the difference can be dramatic.

    The classic "Feel Good" locations are the Caribbean and Greece. But I've heard of some people stating that some parts of Hawaii — especially outside the metropolitan areas and on the beach — can be really good too.

    Here, Dr. Sarah Myhill talks about the effectiveness of beach locations in improving ME/CFS sufferers' symptoms.

    http://www.drmyhill.co.uk/wiki/Mould_Sensitivity

    Have any other ME/CFS patients reading this experienced partial or full remissions while on vacation? If so, where did you go?

    Best,

    Lisa Petrison

  9. >Jamie you are the 3rd person I've heard from in a month that did better just by virtue of moving to hawaiii. One other person is very sick in Sf: basically bedbound, yet like you was able to be moderatively active in Hawaii. The other lives in Delaware and is so sick she hasnt left her house in years, yet was out and about every day in Hawaii. Then there are all those that felt better in Caribbean. Everyone seems to associate it with the diminished stress on vacation…as if patients lead stressful lives wherever they live, having to work full-time and all.

    I'm not discounting elevation as a factor but if that were the sole reason for your improvement, wouldn't people feel better as they moved to the bay area or to Seattle? Yet I've never heard of that happening.

  10. >I just drove Dallas/Mpls/Dallas to bring my wife to visit her sister, dying of Cancer. I dunno which C. I understand dying, not much else. I did not feel better, anywhere, ever. I have the boring version of CFS. I can drive for hours at a time. It is less stressful than laying in this bed texting and playing video games. I think I understand the frustration of being sick and not being able to find any treatment. I also understand the possibility that I am not fully cognizant of the individual stress on each of my ten trillion cells and hundred trillion micro-organisms. It ain't easy being being a mob. Hawaii sounds great. All we get along I-35 is tornadoes and big hail. Sigh.
    Don't let the bastards wear you down ;)

    Al

  11. >Aloha and mahalo for writing while in Hawaii!

    I lived there for ten years and hope I'll be able to live there again one day.

    Enjoy!

  12. >Aloha!

    Thanks for putting up the links to the MLVs in human cancer links! Since the 70s! Unbelievable!

    Glad you could get to the beach and even take a hike! Keep getting better!

    Justin

  13. >ALOHA! which to mean stands for A Life Of Happy Achievement. My wish for all of us who read/write here.

    I am THRILLED you're on vacation and holding there is more, much more, joyous active living for you.

  14. >Dear Dr Deckoff,

    Whilst the comment below is true, it is also illogical and back to front.

    "It would be a serious mistake and disservice to patients everywhere to define the disease narrowly based on either lab tests or symptom combinations. That would be like saying that AIDS patients with pneumocystis pneumonia have the disease, but patients with Kaposi's sarcoma don’t."

    The only reason we KNOW, that HIV is the only biomarker that is important in AIDS is because ONLY very narrowly defined patients that ALL had one presentation were grouped and tested.

    It is a grave disservice to patients to GROUP together MANY DIFFERENT presentations of disease BEFORE we know that they are really the same disease. Science works when you are looking at the same thing, and that can only be done when you are very very narrowly defined.

    That is not to say that other patients do not have ME, but in order to highlight and identify the biomarkers, we need to be narrow and specific to begin with.

    For example, had PCP and KS been different diseases, and not both linked to AIDS, then scientists would have been arguing for decades about the real cause of AIDS, had been grouped together. HIV was discovered ONLY by looking at very similar narrowly defined severe AIDS patients. That ultimately resulted in uniform results, the discovery of HIV and the benefit of everyone regarless of presentation benefitting from it.

    To be over inclusive also includes Oxford and Reeves patients, people who we know according to the work of Leonard Jason, actually have depression and fatigue and personality disorders. The only way to exclude those patients is to insist research is done only on the narrowly defined and severely affected.

  15. >i'd give just about anything for a day of feeling that "the best is yet to come"… i'm holding on through osmosis, jamie. i'm not too proud to grab onto other people's ankles. oh there are still brilliant moments, but never ever without pain and sickness. you give us glimmers of hope. xoxooxoxox

    verification word: "actica" lol

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