I was pretty sick when I wrote my end of the year post. Right after I wrote it, I came down with an upper respiratory infection that I am still recovering from. The rest of my family now have it too. I’m not back to where I was a month ago, but I am approaching function again. This episode has reminded me of how grateful I am not to feel like that all the time anymore.
My Hard Truths post hit some readers like a wet blanket. In particular, there are some patients who are noticeably improved after a couple of months of treatment and already feel that antiretrovirals are worth it for them. Ali, who was the skeptic when we began, has been reminding me of how much better we are than when we started. I was most definitely writing from a place of personal disappointment, having gotten so close to where I need to be for productivity. Perhaps I was feeling the need to say something to moderate the enthusiasm I expressed months ago, since it clearly is not a slam dunk, at least for patients who have been sick for a long time. Perhaps I was expressing my frustration that this far into it, the science has not progressed enough to enable adequate assessment of what the drugs are doing, but neither Ali nor I have any thought of stopping them.
We do unfortunately find ourselves back in that place of “fiddling around the edges” as a friend put it in an email. My New Year’s resolution was to get serious about supplements again (I have difficulty swallowing pills), in the hopes that it will be more productive now that we are healthier. In the early years of my illness supplements and botanicals were more noticeably effective than they have been in recent years; maybe they will be again. I have been struck by the fact that any intervention mentioned, no matter how benign, seems to have made somebody worse, including supplements. Personally, I have never found a supplement to be anything worse than useless.
It still seems intuitively obvious to me that preventing infection of new cells is a good idea. The drugs we are taking, that have tested against XMRV in vitro, interfere with early stage replication events only. They do nothing to prevent provirus from producing viral product and fueling persistent immune activation. The HIV model continues to fit very well, complemented by what we know about simple animal retroviruses. Here are a couple of good papers about HIV that also shed light on the downstream effects of XMRV/HMRV’s:
Antioxidant protection from HIV-1 gp120-induced neuroglial toxicity. Walsh
HIV-1 viral proteins gp120 and Tat induce oxidative stress in brain endothelial cells. Price
Another MLV paper that fits our evolving model:
Activation of Transcription Factor Nrf-2 and Its Downstream Targets in Response to Moloney Murine Leukemia Virus ts1-Induced Thiol Depletion and Oxidative Stress in Astrocytes. Qiang
Here is an interesting, well referenced paper (unpublished):
HIV infection in children – neurodevelopmental (autistic) outcomes and clinical pathologies – and their correlations to idiopathic autism. Lozac
My opinion is still that patients have the right to consider antiretrovirals as one of their treatment options. My goal here is certainly not to aid the considerable forces that want to shut down that option in any way, but to have it be an informed decision in light of the anecdotal evidence that we do have. It bears repeating here that doctors do this every day with less evidence and much more dangerous drugs than the drugs under consideration here. What must be said is that the response to antiretrovirals has been mixed, though there has been some success. It does not appear that anyone has been harmed. I still believe that there are compelling reasons to consider antiretrovirals for certain, but certainly not all, X+ CFS patients.
There continues to be tangible progress towards making the WPI’s vision of collaborative science and medicine a reality. There were lots of curve balls in 2010, but it’s a new year, if not a whole new ballgame. We are gaining momentum. A team is assembling. We finally know how to think about the disease. A coherent approach to treatment is within reach at last. There is a rapidly evolving framework for considering the needs and best options for an individual patient. We have an unprecedented opportunity for scientists and doctors to work together to move our understanding ahead as quickly as possible: understanding to translate into clinical successes. The obstacles are considerable, but failure is unthinkable. Breaking new trail is never easy, but was there ever a group of patients who needed new trail more desperately?
~ Ralph Waldo Emerson
>Thank you, Dr. Deckoff-Jones. I agree that progress is being made, and I am eager to see what goals are accomplished by WPI, with your help, in 2011.
XMRV+, 24 years M.E.
>Thank you for being honest. What good would it be if you were not. I appreciate your fair and balanced presentatin of your experience and are happy for the knowledge you are sharing with us.
>Of course we all wanted a success story with no bumps in the road, but I think we also knew there would be bumps. Thanks so much for being the trail blazer. Words cannot say how much we appreciate what you both are sharing with us.
Dr. Luckett's sneak peak at what will be revealed next week in Santa Rosa says that patients who were on only Viread and Isentress seem to have done better than those on AZT. Are you giving any thought to dropping AZT? Is there any research on HIV/AIDS that suggests a two-drug combination works?
>Thank you Jamie for letting us know how it is going; I am checking my readers list nearly every day to see if you already posted again. Also like to hear form Ali!
I have some questions. I do not see anyone addressing the difficulties treating children for XMRV/mlv-related viruses. Obviously one has to be twice as careful with any medication for children, but do you see a chance that children can get treated with ARV too, under strict supervision of a infectious disease specialist of course ?
My kid has lost so much, so many school years and if help is not coming soon, I fear for his future, and for all the other children who are sick with neuro-immune diseases. This is a harsh world even for healthy young people….it is not getting any easier.
Please let us know if the WPI is addressing the issue of treating children with XMRV related viruses and how would you go about it ?
(I have a son who is 14, also diagnosed with ME/CFS by Dr. Meirleier. Did not test him yet for XMRV; wanted to wait for improved methods.)
>Take heart, there are many here among us who have difficulty swallowing what some others suggest as helpful. As one who had sudden onset and stopped being an exercise fashion victim, the good old get some exercise is not well received. CFS not only stopped my workouts, it stopped my warm-ups. I do like chicken soup, but, it does not help my body, just my soul.
>Despite thousands of experiences showing that I will most often rebound from a crash, it remains a discouraging experience (to say the least). Maybe it's a good sign that we get so disheartened over the set backs, for to feel nothing would indicate hopelessness. We must be the strongest people on the planet to endure such an extreme challenge for so long.
I'm really glad that you and your daughter have made significant progress. I'm also thankful that you share your pioneering experiences for us to learn from. You both are indeed an asset to our community.
I too have gone with the idea that supplements which did nothing for me in the past, may be helpful now. Some are worthless, some beneficial. Honestly, these days I go mostly on intuition…but I do respond differently as I improve. It makes sense that we would.
>I have known I am XMRV+ since September 23, 2010 and have not succeeded in finding someone who will prescribe for me. It is very frustrating to be forced to continue to live with ME/CFS knowing there is a treatment that MIGHT help and be unable to access it. I am placed in a position of being without rights of self determination — patient dis-empowerment in health care.
Like others, I appreciate your sharing the ups, downs, and in-betweens of your journey. The truth to empowers us.
>Thank you for your honesty….that is all we are looking for, the truth. I am xmrv+, in the UK, and I appreciate your braveness….thank you. Take good care.
>I appreciate the honesty in your updates. The issue of whether every x+ cfs person should take antiretrovirals is interesting to us. My daughter is able to work full time keeping her illness secretive. But she would categorize her pain as almost always agonizing and she feels nauseated and sick every day. She thinks that would warrant taking such drugs and i would tend to agree with her. Pain seems to be getting worse every year. Oh Governments! Please send the cavalry.
>Thank you so much for this blog! I read it avidly in the hopes my daughter and I will be able to get treatment that will help us. This is just a little detail but it might help for you, Dr.Deckoff-Jones, and anyone who has trouble swallowing supplements. My nutritionist taught me this and it really helps. Take a spoonful of yoghurt and put supplements in mouth and swish around and they will go down much more easily than with water. I can swallow many at a time this way, but you can do one at a time or whatever works for you. It much easier than swallowing with water. Hope this helps,
>Fantastic article (I nearly missed it) on : HIV infection in children – neurodevelopmental (autistic) outcomes….
Thank you so much !
>If the XMRV findings were due to contamination, the antiretrovirals could still be inhibiting herpes viruses, couldn't they, with this explaining the plateau reported by those on antiretrovirals?
Once the herpes viruses are cleared from the bloodstream then the improvement plateaus, although the herpes viruses are probably still in their reservoirs which would explain a decrease in functionality upon withdrawal of therapy.
Just keeping an open mind for alternate explanations.
Raltegravir Could Be Effective Against Herpes