A few people have written to me that a rumor is circulating on the internet- apparently a doctor reported to a patient that two patients have died on AIDS drugs. I first heard this rumor a couple of months ago from a patient in Europe who heard it from a doctor there. Both of these doctors attended the same events in Reno last month, so I presume they communicated about this and are talking about the same two patients. In the reports that I heard, there was no other meaningful information given. It seems to me, that under the circumstances, it is incumbent upon the reporters to provide specific details of the cases. Since patients are making pivotal decisions based on very little scientific information, it is not responsible to attempt to influence by rumor and innuendo. Complete clinical information is essential to make use of the risks that others have already taken. I have never seen an example where transparency from the practicing physicians was more needed.

If any X+ patients taking AZT, tenofovir and/or raltegravir have died, nobody wants to know about it more than I do. I invite, no beg, the doctors spreading this rumor on both sides of the Atlantic to share the pertinent details. The patients who are in the process of making a decision about whether or not to pursue treatment now, need to factor in all relevant information; they should have any available data. Without the kind of detail I’ve been providing, any statement about AIDS drugs killing people is meaningless fear mongering. And if it is true that the spectrum of response to antiretrovirals runs all the way from near recovery to death, well then, clinical trials and a full-court press from the scientific community are even more urgent than I thought. It seems highly unlikely, however, that anyone has died as a result of the three drugs in question. These drugs simply don’t have adverse effects that would be fatal. They are not new drugs and the adverse effects are very well understood.

This seems a very good time to say again what I have said all along. I am not advising anyone to make the same decisions that I have, but I do think that everyone should have that right. Waiting to participate in a clinical trial is reasonable for many, but for those who feel they can’t wait, or won’t wait, there’s nothing magical about a clinical trial. They give you the drugs and see what happens.

We have a little more information now than when I started antiretrovirals. It seems to be more difficult for many to get on the drugs than I expected from our experience. Also response to treatment is more variable and slower than I would have anticipated. All of this needs to be factored in with each individual’s particulars in partnership with a knowledgeable, or at least interested physician who is willing to learn.

There is a small, but growing coalition of doctors committed to helping now and in the future- committed to keeping up with a shifting landscape. The unmet need is too great to stick to business as usual. Many physicians have become inured to the suffering. I think that will break down as the science penetrates the medical culture and new physicians become interested. I encourage any doctor reading who wants to help to get in touch. Participate in this journey of discovery. Patients all over the country are looking for physicians willing to work with them. I am happy to serve as a connection point.

Why now, all of a sudden, is everyone so worried about CFS patients taking drugs that may not help? How ridiculously paternalistic! Apparently some of our doctors think that we aren’t smart enough to assess all of the available information. What’s our problem anyway? Why not let them decide for us? Haven’t the authorities done a great job figuring it out for us up until now? At this point in time, it’s clearly the patients who are most able to connect the dots.

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19 thoughts on “Transparency

  1. >Jamie, I haven't heard these rumors yet but thank you for addressing them. "And if it is true that the spectrum of response to antiretrovirals runs all the way from near recovery to death, well then, clinical trials and a full-court press from the scientific community are even more urgent than I thought." – So true!

  2. >I had not heard this rumor of XMRV positive people dying from taking ARV's which were used for HIV. If it were true, I think we would have heard of it, and I think we would know the names of the deceased. I really think this is a rumor started by those who seem intent on keeping us sick. They are not urging clinical trials; instead, they are urging us to sit down and be quiet, as we have done for the past 25 years. They prefer the status quo, with us sick and their "kingdoms" intact. Do I need to name names? All right: CDC, CFIDS Assn of America, psychologizers. I say "NO MORE." If this rumor is true, they need to prove it. Until I have proof, I consider it false.

    Patricia Carter

    September 26, 2010 8:53 PM

  3. >Well maybe these doctors need to worry about how many people have died from the use of unnecessary antidepressants. And how many medications are pushed on the public that are later found to have life threatening side affects. Let's see Celebrex, Hismanal, and the current one Avandia I think it's called. That's just to name a few. Are they worried about those deaths? Those people were unsuspecting victims since they assumed those meds were safe. They were FDA approved after all. And what is our option? Lay in bed another 25 years waiting for them to take this disease serious? If someone did die, which I highly question. Well, ME/CFS patients know the risks and can decide for themselves if it's worth it. If they want to talk medication deaths then let's bring them all up.

  4. >I agree with you Jamie. We've been experimented on informally for decades, why the fear of clinical trials and ARVs to treat those with confirmed retrovirus infections? It's absurd.

    Every drug we've taken has been an experiment in how the body and the illness will react to it because doctors have not known anything at all about the disease they were prescribing for! They have prescribed drugs in the dark based on reactions and side effects in "normal" people. What's the difference here? The identification of side effects has never been a reason not to prescribe. It's balanced against the risk of not prescribing and the quality of life of the patient involved. They make it sound like ARVs are the most dangerous drugs available. They are not. They are possibly the most well researched and well studied drugs on the market, as they logically would be; they're a boon for the pharmaceutical companies – drug cocktails for millions for the rest of their natural lives. It's a no-brainer.

    After almost three decades of one of the most sinister illnesses it's possible for a human being to be inflicted with, I am here to tell the doctors, researchers and government health agencies that there are worse fates than death. Being bedridden for years in agony with a barely perceptible pulse after being advised to take up an exercise regime by a treating physician prescribing in the dark is but one little bit of the story. If it's true and there have been two deaths associated with taking ARVs, I would guess those two people weighed up their options and came to the same conclusion: death is not the worst thing that can happen to a 'CFS' patient.

    I don't believe all this caution has a great deal to do with concern for the patients' well-being at its core. That kind of concern at this stage just doesn't marry up with leaving people languishing in a living death for years. It simply doesn't add up that they now fear for our safety. I find that notion laughable to be honest. This is, once again, due to fear of loss of face, loss of careers, loss of status among the people at the top. It's better for them to leave people untreated and for death to occur naturally than to take the risk of getting it wrong (or right) with the drugs. It's safer for them, not us.

    Lisa Simpson

  5. >The death of ME/cfs patients is often subject to obfuscation. I would want more than just names of the supposed pair of deaths "due to taking ARV's for CFS"

    In the UK recently, the death of one ME patient was recorded as "Sudden Adult Death Syndrome". Her heart failed. Heart problems are common (±80%) in ME/CFS.

    The death of another was recorded as due to smoking a small amount of Cannabis. A major gastric bleed was the event that preceded death. Gastro-intestinal problems affect >50% of us. Hmmm.

    Thanks, Jamie, for another clear contribution to the fight for effective treatment.

  6. >I've been on antiretrovirals since February . It's not anymore dangerous or challenging than any other drug I've been on. In fact my doctor tests me Bimonthly for specific parameters that other drugs you couldn't test fort because they were experimental . By the way these are the least expensive drugs I've ever been on and I'm slowly getting better. Until the names of these patients and doctors are produced this is just a scaremongering effort by someone invested in other theories . I'm not invested in a theory . I want my life back!!!

  7. >Two thumbs up, Jamie! Well said!

    Thank you for everything you are doing for all of us who are ill with this dread disease. We could have no better advocate than an intelligent, experienced, and articulate physician who is living with the illness herself and in her family – and who is willing to take reasonable and calculated risks to try to get better.

    Please, keep on going, and keep on speaking out!

  8. >anonymous….you stated you were on the drugs since feb and are making progress. may i ask if you are on all 3? how long did it take to make real progress? i would love to hear more. thanks

    i have to admit the rumors have me a little worried because i have had cardiac issues ever since i began the drugs. i feel as if something is causing my heart a lot of pressure.

    i'm still better on the meds though so i dont plan to stop.

  9. >im xmrv+ but im not as sick as a lot of people.
    if i was very very sick, i would try and get hold of AIDS drugs, for now i will just sit tight and wait.

  10. >anonymous-you said these drugs are cheaper? I was told they would be $1200-$1500 a month. That is part of what is holding back clinical trials where I live. Can anyone help me with the discrepancy in the cost factor????

  11. >Pharmaceuticals are the 3rd leading cause of death in the United States, right behind heart disease and Cancer; or as some call it, smoking and obesity.

  12. >sue miller….you can get the drugs free if you qualify for the patient assistance programs of the drug manufacturers. i have several who have gotten them this way.


  13. >So, two physicians from Europe claiming two people died of antiretrovirals. They have to be kidding. Who do they want to fool?
    Dr. De Meirleir told in his latest congres in Belgium that nobody was on antiretrovirals. Of course he was lying. The majority of the patients don't speak English well enough to investigate the internet themselves. I didn't like the way he handled it. He mentioned that antiretrovirals were useless in his eyes. I don't agree. What I'm convinced of is that a lot of physicians have a hidden agenda. They are opportunistic like the bacterias found in CFS.

  14. >demeirleir actually said ARV's would be useless?? wow. when they innoculated the monkeys with the virus, they found that it produced a "chronic, replicative infection" in the tissues. so why wouldnt ARV's help??

  15. >I don't think KDM is saying ARVs would be useless. Several physicians that believe XMRV is the cause believe HAART would be useless and potentially harmful–That just means they think HIV drugs won't translate well to XMRV treatment.

  16. >I'm terribly sorry, but I guess there is something lost in translation. To be accurate he said; In my opinion antiretrovirals are not usefull in ME/CFS.
    The fact remains the same; in his opinion the antiretrovirals are of no use in this disaese. This I find disturbing. It contradicts wat dr. Singh writes.

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