A year of antiretroviral therapy

Ali and I started antiretroviral therapy a year ago. We both improved noticeably for the first nine months, though the treatment didn’t prevent our crashing when we started to engage life again. My setback was brief and I seem to be able to push the envelope a little now without crashing in a prolonged way. Ali has had a tougher time of it. In the last few months tachycardia became a serious problem, not new, but worse, and she started atenolol. It helped with the tachycardia, but some new symptoms started. She ended up stopping atenolol and AZT at close to the same time a month ago, to see if they were making things worse. Stopping the atenolol clearly helped, stopping AZT less clearly so, but the tachycardia does seem to be subsiding and in the last week or so, she seems to be on an upswing. Although she has been homebound for a couple of months, she is feeling like she can go out again. She has been writing productively throughout. I also stopped AZT a couple of weeks ago. I was wondering if maybe I’m a little weaker than a year ago though my CPK is fine and who can tell? But AZT is the most problematic of the drugs long term and there is no way at this point to evaluate whether it is worth it or not. I didn’t notice anything coming off it. We continue on Viread and Isentress. When I think about stopping them, I remember the fifteen years of malaise I endured, now mostly gone, and the intense neuropathy pain that is now little more than background noise.

Under the best of circumstances, the drugs available to us based on in vitro studies (reverse transcriptase inhibitors and an integrase inhibitor), are an incomplete solution, as they can only control early stage replication events. Patients who have been sick for a long time most likely have a large amount of integrated virus cranking out viral product and fueling persistent immune activation. The drugs we have will not affect this, only preventing infection of new cells. Also we do not have a protease inhibitor to prevent assembly of new viral particles. The HIV protease inhibitors were ineffective against XMRV in vitro in the Singh study. XMRV protease is not the same as HIV’s. Crystal structure of XMRV protease differs from the structures of other retropepsins. Dimaio

I would like to restate that this blog is personal and not endorsed by the WPI. It precedes the association. The opinions expressed here are mine alone. I am working for the WPI in an administrative capacity, recruiting, planning the clinic to meet the needs of patients, fielding questions. My job is to create an environment where the best possible care can be provided and implement the clinical database. Organizing, creating a framework, but no one need be concerned that I will be setting medical policy based on my own opinions. Medical decision making will of course occur within the context of individual physician patient relationships. We are gathering a network of physicians to work at a distance with the clinic doctors and over time we will work towards consensus.

“Cover-up” in my last post refers to people who have been wrong and now don’t want that to come to light. I was not trying to suggest that there was or is a conspiracy in the sense that people are planning with each other to do dastardly deeds. My interest in the dangers of vaccines has nothing to do with conspiracy theories. It has to do with the very strong anecdotal evidence that vaccines have harmed a lot of people in the various neuroimmune disease cohorts, ME/CFS, ASD, GWI. If you listen to many histories, there is a clear suggestion that vaccination is one of the major triggers for X related disease. Whether the reason for that is the immune challenge or the introduction of a retrovirus, it seems prudent for the moment to refrain from administering vaccines which are not immediately necessary until we know more. We need to be sure that we aren’t putting patients at more risk from vaccinations than they are from the diseases for which they are being vaccinated. There has always been an element of the vaccination program that sacrifices a few individuals for the greater good, but this seems higher than a small statistical risk for this group of patients. It’s strange that this is such a controversial thing to say. Seems like a no brainer to me. Primum non nocere.

Like everybody, I’ve wondered a lot about where XMRVs came from. I’ve been thinking about the ideas in my last post, reading widely for some time, but my thoughts coalesced when I read the Paprotka CROI abstract. Frankly, I was expecting that people far more knowledgeable than I would punch holes in what I’d written. But it has now been read by thousands of people including a bunch of virologists and although some found it inflammatory, nobody has yet taken exception with the science. Pretty scary. If my hypothesis turns out to be correct, we’ve given retroviral evolution a leg up by a couple of hundred thousand years or so in less than a century. And seriously weakened the health of the species. So let’s hope I’m wrong.

Good doctors must engage in inductive reasoning. Educated guess. There may be much unknown, but there is still a real patient sitting there in need of treatment. Scientists argue that they must go through all the necessary deductive steps to get to the solution. That leaves a lot of patients with no meaningful treatment. In an emergency, it’s a good idea to skip to the answer if you can, figure out what you can do and fill in the blanks later. It’s pretty clear we have a public health emergency. Whether the etiology of the illness is X, Y or Z, it is retroviral in origin. It fits like a glove, better than anything else ever has. Making that leap allows one to think about the illness in a way that doesn’t yet offer a cure, or even a functional cure, but it does help in the choices of useful or palliative therapies. Most importantly, it should help us not to hurt the patients. Huge damage has been done because of ignorance. At least we can put an end to that.

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31 thoughts on “A year of antiretroviral therapy

  1. >I didn't read anything in your last post that lead me to believe you were suggesting a "conspiracy theory". Happy to here someone give me the brutle reality in terms I can understand without mincing words. It may be caused in the creation of vaccines. Ok. fine. lets move on to the next step and get it out of the dang vaccines if it is in there.

    This is a highly contentious topic and everybody is going to get flack no matter what side they are on in they choose to speak out.

  2. >I love "Whether the etiology of the illness is X, Y or Z, it is retroviral in origin. It fits like a glove, better than anything else ever has." Thanks for all you are doing!

  3. >The link between XMRV and vaccination may be contentious and perhaps semm remote to many but surely it must be investigated because if it were to be proven correct, then the consequences would be catastrophic. Many of us already know just how catastrophic – enough said, I think!!
    Dr. Deckoff Jones, you have seen your child suffer from this illness. As a Mother of 3, I can think of nothing worse. Research must continue for the sake of my children. This disease has annihilated me but IT MUST NOT TOUCH MY CHILDREN IN THE SAME WAY.

  4. >Thank you for sharing your personal thoughts and feelings. I look forward to your writting and hopefully your progress. You have taken on a job not many would and learning for us, I thank you for that as well. Hang in there, most of us are silent but there for you while you are making history. We all know that many of us are running out of time and getting worse. I can not rest in peace until I know that my son will have a treatment for this terrible illness that has taken my life for 20 years. I am so thankful for all of those who are working and fighting to help us.
    God Bless!

  5. >Thank you once again, Jamie, for this update, and for documenting your experience with antiretrovirals with us. I so appreciate your honesty and willingness to share so personally. May this next year bring you and your daughter increasing health.

  6. >Primum non nocere. Indeed! Seventeen months ago, I was walking almost every day and had resumed my long-term running habit. I was thrilled I could run for 1/2 mile without stopping. Fifteen months ago, my life crashed into the Me/CFS nightmare. Today, I'd consider it progress if I could walk on a regular basis or if I could asymptomatically maintain an upright position all day, every day.

    I've known since late September that I am XMRV positive — and haven't yet located a doc who will give me script for HIV drugs. In the meantime, the harm piles up.

    In January and February, I fell 3 times, the third time being on the arm with my brand new surgical steel plate, the result of fall number 2. I have been a very muscular, athletic woman for decades. No more! I've lost much muscle and bone mass in the last 15 months. NOT healthy for a woman who lives north of 65 years.

    Every day I am forced to live 85-90 percent of my waking hours flat out in the recliner, I am being harmed. Falling repeatedly and needing surgery is harmful! I am quite sure that without the loss of reaction time and muscle mass of the past 15 months, I would had been able to hold myself upright and avoided falling the third time.

    I could be a Xanax addict and get Xanax prescriptions more easily than I can get drugs that might help me get out of ME/CFS hell.

    Maybe in ME/CFS, it's just considered collateral damage! If only how harmful it is was considered at all!

    I know there are many, many others who've been harmed more and for ever so much longer than I. I also know I'm preaching to the choir here, but I needed to say it semi-publicly.

    That leads me to a constructive suggestion: can WPI set up a national/international registry similar to the national registry for obesity?

    It seems to me that those of us who belong to the club hold an aggregate thousands of years of experience of living with ME/CFS and could create a database that might be mined for useful/helpful information.

  7. >I read cover up, not conspiracy in your last post. I also didn't see it as emotionally charged or aimed at manipulating our minds. I applaud you for sharing your educated views with us.

    I was required to get the Hep B series of vaccines to work in CCU and have wondered if it was a trigger for ME/CFS. I got sick within a span of 3 months.

  8. >I like Rita's idea of a patient registry of some sort – I'd thought of suggesting a survey of patients to determine what we all have in common that could prove to be the vector for X.

    One thing I've read from many is that we were all very active, often outdoors. I lived for three years in a log cabin without plumbing, and became ill during this time (1993). My only other friend with long-term CFS also happened, coincidentally, to live rough, without plumbing, for some time. But I don't believe in coincidence.

    What we both definitely had in common was exposure to rodents on a daily basis, as well as ticks. Anyone who has been camping or doing outdoors activities shared the same exposure. Perhaps it's vaccines, or perhaps there's a tick-borne or rodent-vector illness that triggers the X to activate.

    I appreciate all you are doing and sharing with us – my PCP is awaiting my XMRV test results before starting me on antiretrovirals, and in the meantime we're giving Valcyte a shot. Seems to be helping, though it's only been a month. Proceeding very cautiously… though there's not much left to lose at this point.

  9. >Jamie, thanks so much for sharing with us. I always look forward to your comments. I have wondered, would you consider using Rituxan as a treatment?

  10. >I agree about vaccines. I myself got a couple of vaccinations which was soon followed by mononucleosis (glandular fever) which was the start of my last 6 years of ME/CFS. I think they were hepatitis vaccines or something… don't really remember.

  11. >it may help to know that haart raises VGEF levels

    polytropic mulvs damage brain capilary endothelial cells raising VGEF and MIP-1 levels

    This leads to the chain of events which causes the pathology associated with these viral infections

    HAART behaves like a neurotropic MULV virus and would obviously explainthe lack of effectiveness with the approach. This aspect would need to be considered in designing an effective treatment

  12. >anyone who has ever dared to mention vaccines as a possible trigger for me-cfs and/or fibro will know the sacred cow that they are. the eyes go back into the head and the response is swift, shaming and ABSOLUTE. we may be on the verge of seeing that sacred cow taken down once and for all; i sincerely hope so. as you said in your last post, we already lost a couple of generations. now if we could only get the parents of autistic kids to join with us, we'd have a very large movement indeed. ~lt

  13. >I have worked overseas for many years and have a long history of vaccinations without any problems… but in Jan 2006 I woke up sick one morning in Rwanda, spent a week in hospital with an unidentified illness (symptoms typical of sudden onset ME, as I discovered later) and took about a month to gradually recover. After a trip home in June 2007, and further top-up vaccinations, my health began going downhill, this time more gradually. By September 2007 I was barely making it to work. By January 2008 I'd lost my job. Very difficult to ascertain the role played by the vaccinations, especially as I've had so many over the years. Would be interesting if you were able to write more about this.

  14. >Raven…I too was required to get the hep b vaccine, and 3 months later…BOOM..CFS!

  15. >Very brave of you both to try this therapy and to blog about it.

    Here in the UK I think we are about 20 years behind you. Still being offered PYT therapy (Pull Yourself Together).

    Was doing 3-4 long haul trips a year needing vaccines till I got ME/CFS so a vaccine trigger/source would fit my case. But my challenge now is to get UK medics to give me antivirals of any sort – they won't accept that they are even worth a try. Will persist, though.

  16. >Thank You Jamie as has already been stated for blazing the trail and documenting your history making progress for us publicly. I also did not hear any conspiracy but simply cover-up in your last post.
    I hope WPI will be able to put together a database list of Dr's that ARE willing to help those of us that are XMRV+ so we will be able to have some place to go and not be left to "Hang out to dry" for much longer.. For some of use even only 2 -3 hours away from WPI in a Major City it boggles my mind that in this day and age Dr's are not "Mandated" to learn the Reality of the New Retrovirus. Maybe a new class for CME can be created ?
    I personally can not blame any vaccine, although I did work in a hospital for 17 years, I avoided the flu shots because they always made my mom sick and later I found out I was allergic to egg whites. so unless it was the early Polio sugar cubes, I have no idea, but I did have many years later what seemed like a viral high-fever sudden onset that must have triggered the deadly bloom. That was 24 yrs ago.. Right now OI/POTS is my worst enemy.
    *Hugs* for you and your daughter ~

  17. >When the mystery illness was given an official syndromic criteria and appellation, it seemed that despite the poor quality of the name, this was a breakthrough.
    Because once a "syndrome" has been ratified by an authorized medical committee, doctors are supposed to adhere and conform to the tenets of their profession by recognizing that this "entity" has been validated.
    Whether the criteria is good or bad, it has been made legitmate.
    It boggles my brain to find out that doctors felt no compunction at all about ignoring this mandate.

  18. >I live in the UK and am being prescribed anti virals – go on Dr.Myhill.co.uk for help and info. Hope this helps you!!

  19. >Medical Professionals/Persons
    with CFIDS/M.E.


    This is where we were in 1998, 13 years ago.

    Peruse the list of what was known then – and weep for what might have been.

    If the government health beauracracies had done their jobs 13 years ago, Ampligen would be widely available, maybe even off patent, as would many other drugs suitable for fighting viruses and retroviruses in ME/CFS.

    Thirteen years ago I functioned at about 50-60 percent. Now I function at 25-30% and I'm getting worse.

    In 1997 Dr Philip Lee, then Assistant Sec. of Health, said on national TV that "CFS" was probably caused by a virus or a retrovirus. Even though the government decided not to do its job then, if they had not sabotaged those who did the research back then, we would not now be approximatley where we were then.

    The only difference now is that WPI/Cleveland Clinic and a few researchers from NIH, and now Lo from FDA, did not swallow the catechism of "mainstream" researchers who were willing to throw us under the bus because the CDC, influenced by puppet psychiatists from UK, said to.

    The only thing that stands between another go-around of this perpetual circle is the perseverance of WPI and their researchers, and good people like you, Dr Jamie. Thank you so much!

    May your ethics and dedication to the truth help you win this one for all us. Those who are dedicated to preserving the status quo haven't given up yet. They've been able to disappear the truth so many times before, they think they can do it again. I hope and believe you, WPI, and we in the patient/caregiver community can prove them wrong this time.

  20. >From the Science Mag article on the CROI presentation:

    "…even if XMRV is not a threat to human health, the fact that a retrovirus that can readily infect human cells was apparently generated by chance in the lab raises some interesting and potentially troubling issues."

    I'll say (and you already did).

  21. >"Frankly, I was expecting that people far more knowledgeable than I would punch holes in what I'd written. But it has now been read by thousands of people including a bunch of virologists and although some found it inflammatory, nobody has yet taken exception with the science."

    Maybe not everyone with the requisite education and/or knowledge of the subject feels like spending their day deconstructing a far reaching theory which is primarily based on a simple lack of education on the topic in question. One commentor on a different blog had the following to say about it-

    "Which part of your lengthy comment are you asking Vince to fact-check? Correcting the whole screed would take a very, very long time."

    For starters, the premise that the entire piece is based on, namely the belief that the upcoming XMRV recombination paper merely showed 'that it is possible to produce XMRV in a lab' is itself an over-simplification to the point of ridiculousness, similar to someone having no medical knowledge or training calling a gushing artery a 'flesh wound' or 'scrape'.

    What the XMRV recombination paper actually reported was that the events described therein resulted in the creation of basically the exact same XMRV as was reported in the disease association papers, with the chances of this exact virus arising from a seperate recombination event being so infinitesimally small that it lead the authors to conclude that "We conclude that XMRV was not present in the original CWR22 prostate tumor but was generated by recombination between PreXMRV-1 and PreXMRV-2 during in vivo passages of the CWR22 xenograft. The probability of an identical recombinant arising multiple times is vanishingly small, raising the possibility that contamination of human samples with XMRV originating from the 22Rv1 cell line is responsible for its reported association with PC and CFS."

    Just because the scientists who wrote the paper are good at what they do and use proper scientific protocol by stating that it 'raises the possibility of contamination' doesn't mean that your essay isn't largely composed of hot air based almost entirely on a primary misunderstanding of the topic in question.

    Perhaps it would be better to ask questions before writing essays instead of after?

  22. >I am a doctor, not a scientist. Everyone reading knows that. My question on the virology blog in question was about one sentence, and I asked it because someone posted my blog there in its entirety, and I had changed that sentence shortly after it was posted. Here is what I said:
    I wrote the piece posted above. I am a doctor, not a virologist, and this post covers a lot of ground that is tougher than rocket science. I have many questions and much to learn, but I've rewritten the sentence in the second paragraph that starts with "Human and mouse…". Dr. Racaniello, is this correct? Endogenous retroviruses recombined in or infected human tumor cells through subsequent passages in vivo (in mouse) to produce a fully replicative xenotropic exogenous retrovirus..Respectfully,

    And here is the answer that the professor posted.
    I would write it as follows: "Two endogenous murine retroviruses related to XMRV recombined in human prostate tumor cells that were passaged in mice. The recombinant retrovirus produced is nearly identical to XMRV that has been isolated from patients."

    A clear answer from a scientist without emotional overlay. How refreshing!

    I did run the science past a few retrovirologists before posting. I am sorry you are so hostile, because I genuinely want discussion of the science with those who know more than I do. Why is it so politicized?

    I didn't take exception with the science, obviously, but the conclusion.

    Do you have a problem with the science in my hypothesis? I realize that you think that it is inflammatory for me to state my opinions publicly, but that is really besides the point.

    Jamie Deckoff-Jones

  23. >Hi Dr. Jones,

    I'm sorry for being mean in the post above, there was no need for that. I just feel like the WPI is losing credibility in the scientific community day by day and I don't think posts like 'coverups and contamination' help in this regard.

    Yes, Prof. Racaniello offered advice on the wording of the specific sentence in question. The other comment however was on the topic of your essay as a whole, which is more applicable to your suggestion that because no one has disputed the science in your post that it must be valid.

    In answer to your question however, yes I do have a problem with the science in your post, with the main point being included in my previous post. When you state that "My guess is that passing lots of human tissue through mice and then culturing in the laboratory for now more than four decades produced the conditions to enable a very unlikely event- by giving it many chances to occur", this is in complete disregard of what was presented in the XMRV recombination paper- the chances of a virus identical to XMRV arising twice in two seperate recombination incidents was calculated as being 'vanishingly small'. Vanishingly small is scientific lingo which could be roughly translated as "never say never, but if every single person on the entire planet bet their life savings on the outcome, we would most likely have a planet full of millionaires."

    Your post, and most of the pro-XMRV posts on the internet, in no way summarizes or is representative of the totality of the available evidence on the issue of XMRV being a human pathogen, specifically the following points- 1) multiple XMRV-specific antibody studies not showing any XMRV-specific antibodies in patient or control groups, with the Emory monkey study testing over 1,000 blood donors, 2) antibodies which react to XMRV but are non XMRV-specific occuring in more controls than patients in another study, 3) purported XMRV/prostate cancer viral integration sites being shown to be identical to integration sites in an XMRV-infected cell line, a finding which has never been reported before yet occured twice by the lab reporting the finding, 4) genetic sequences of XMRV being more diverse in an XMRV-infected cell line than XMRV purportedly found in individuals taken at different time points and from different geographic regions and 5) the XMRV recombination paper which I'm not going to repeat how unlikely the authors calculated it to be that the same virus would arise in independant recombinations.

    The point is that your post doesn't really have much science to object to as it's primarily conjecture, anecdote and non-sequitur which ignores the majority of the biomedical evidence on both CFS and XMRV.

  24. >Thank you for contributing.

    I am a doctor. I'm supposed to speculate. My job is to figure out how to get people better in real time, not years from now. That requires conjecture. Scientists need conjecture too, or how would they know what to study? It is sad that we can't come together to figure out what is.

    I regret using the words "cover up" in the title of that post. It mixed issues. Contamination was enough. Somebody needs to figure out how the patients got contaminated. It doesn't matter where it came from anymore. Unless it is still happening and it seems to me, there is reason to think that's possible.


  25. >The idea of Hep B immunization tying to XMRv is an interesting one for me. 20+ people at a very small hospital where I worked became very ill after Hep B vaccine and all have only gotten worse over the years. Several died with various cancers. It would be fun to do the detective work on this one.

  26. >Yes, Dr. Deckoff-Jones, you are a doctor, not a scientist. But I'm pretty sure that wild conjecture is not part of the job description of a doctor. If anything, doctors need to be more conservative than scientists. "First, do no harm."

    I am a CFS patient, and I am bothered by the casual approach to the science that you seem to be taking. I want real answers, not pie in the sky. If the real answers are discouraging, that's hard, but I am more discouraged by the idea that the CFS community will cling to a discredited theory (not that I think the XMRV hypothesis is completely discredited yet). Please start listening with an open mind to the negative evidence as well as the positive. We need to be ready to move on quickly to other theories if XMRV doesn't pan out. We need to be prepared to insist that research on our disease continues in new directions, if XMRV isn't the answer.

    Please, if the XMRV ship goes down, I don't want to go down with it! My disease is real and devastating, whatever its cause.

    I have a question for the virologists who are contributing here. In the original WPI research, it was reported that patients were showing antibody responses to XMRV, which would indicate active infection. How is this possible if the XMRV is only a contaminant? Could they have observed a response that was non-specific to XMRV? What would make them believe it was a response to XMRV? How could this be verified or disproven?

    Another issue: Various contributors here have emphasized that it makes no sense for patient samples to show much higher rates of XMRV than controls, if the source is contamination. How could this discrepancy be explained? I saw one explanation somewhere saying that patient samples tend to be older and more-handled, while control samples tend to be fresh. Is this the case? Does it make any sense?

    Meanwhile, the VIP lab in Nevada is testing fresh blood samples from patients and finding many positive for XMRV. As I understand it, this is not a research lab, but a diagnostic lab. How would the contamination extend to that facility?

    Thanks for any answers from the research community.

    And thanks, Dr. Deckoff-Jones, for providing this forum.

  27. >Osler's Web:
    Inside the Labyrinth Of The Chronic Fatigue Syndrome Epidemic
    by Hillary Johnson
    Crown Publishers Inc. NY


    page 1.

    "Emulating the persistence and care of Darwin, we must collect facts with open-minded watchfulness, unbiased by crotchets or notions, fact on fact, instance on instance, experiment upon experiment, facts which fitly jointed together by some master who grasps the idea of their relationship, may establish a general principle."
    -Sir William Osler, Counsels and Ideals

  28. >Keep beating the drum.

    If you look at the many stories of "CFS" and similar neuroimmune illnesses (tickborne especially), they follow different courses. Some are outbreaks, others slow declines. Either they are due to different pathogens, or something else is going on. The idea of a rather virulent helper virus with a good replicating engine is an interesting one. I know that adeno associated virus is relatively benign and tends to use adeno virus as its engine. The latter is virulent but we're good at getting it under control. Why wouldn't there be other similar viral teams at large, one that is relatively quiescent until stimulated/borrowing another's engine?

    This might allow one to make some sense of outbreaks where some get better and some stay sick in perpetuity, though I'm not sure. Things still don't cohere for me. But I always thought there'd be two pathogens involved…

    I would just raise a hand again for multiple pathogens as causes, especially tickborne pathogens, which are more virulent as time goes by, (or the more virulent strains are more prevalent) and because more ticks are coinfected. You can get really really sick after a tickbite, and stay sick for years. So I wouldn't necessarily say it's the virus, stupid, as a global rule for all those sick folks out there.

    One of the worst aspects of vaccines imo is the triple vaccine. Even naturally occurring instances of measles and mumps in the same year for instance are associated with greater autoimmunity. The idea of three in one is inherently risky.

    Also, "attenuating" a virus means what? It doesn't mean it still can't cause trouble. They should know that by now. They've seen it in gene therapy. It just might cause different kinds of trouble than easily recognized acute illness.

  29. >"The drugs we have will not affect this, only preventing infection of new cells. Also we do not have a protease inhibitor to prevent assembly of new viral particles."

    Protease inhibitors do not stop the assembly or budding of the virus particles. Retroviral proteases are not active until budding (or after budding). Protease inhibitors inhibit the maturation of the virus particle, which essentially means the forming of correct structures inside the virion for the next infection. So if XMRVs action of causing disease (as you seem to think) is by the act of virus protein expression, there are no antiretrovirals that can prevent that and I don't believe it is possible to develop such drugs because the virus is completely dependent on the cell machinery at that phase. Also, just as a side note, protease inhibitors do not stop HIV from killing the cells, but because the virus cannot spread to the next cell, actively virus producing cells die. That scenario however doesn't apply to XMRV because it doesn't seem to cause direct cell death like HIV.

  30. >I quote you here"Scientists trying to tell doctors what to do. Why do they think that doctors or patients should care about their medical opinions? They need to do their work and stop trying to practice medicine." You need to speak to your Boss Dr. Mikovits about practicing medicine. Also all the doubting about CBT therapy helping patients, your daughter is calling for it. She also states ARV's are not the answer to treating ME/CFS.

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