It was much easier to write this blog at the beginning when I was so hopeful of having found a solution. I still believe that antiretrovirals may be a piece of a solution, and I continue to take them. Their use needs to be explored, probably in conjunction with other things, but they are not the slam dunk we needed. However, we need not wonder for years, waiting for somebody to approve an IRB that says we are allowed to find out. We already “know” part of the answer. It should be noted that, for the most part, the people who have tried antiretrovirals have been sick for a long time. The best response I’ve heard of was in a patient who is young and had not been sick for long. It may be that the drugs are useful for the newly crashed, the unborn, or even harder to study, the not yet crashed. A good percentage of people who try them experience cause and effect improvement in the first months of therapy. Like the detection and testing issues, it’s not so simple. Nor is it as simple as, don’t use them, since the drugs move the illness. Nothing with this disease is ever simple.
My impressions of available treatment options in my last post weren’t meant to be in any way dismissive. Believe me, it is all personally relevant. As I’ve said before, I could be wrong about anything. I’ve certainly been wrong before. I’m not writing because I think I’m right about everything, but because I have perspective, for various reasons, and want to shed any light I can. There is so much darkness. The comments sharing experiences are very valuable to all of us. I heard from a penpal in Belgium yesterday who is seeing Dr. De Meirleir, started GcMAF and is doing very well. She also mentioned that she needs to sell her house as she has a mold problem. I do think that mold and other chemical exposures are an important piece for many. The comments about moderate avoidance seemed particularly useful to me. We are always looking for a cure, but improvement counts.
When I was in practice in the Berkshires, I helped people a lot just by stopping things they were taking. I prescribed very little in that practice, other than hormones and weaning schedules for drugs that other doctors had started, often many years before. Sometimes huge gains can be made by stopping things. All drugs have side effects. Patients are often taking drugs prescribed by multiple doctors who don’t communicate with one another. Like an elimination diet, it can be best to stop things, find out what the baseline is and then add things back judiciously. NOTE: some medications are dangerous to stop suddenly. Benzodiazepines and opiates are particularly problematic long term, even if they were lifesaving when started. The memory of how much they helped at the beginning and the fear of how much worse it will be without them, coupled with physical dependence, makes them very difficult to stop. Often tolerance has become a problem and patients don’t believe that going down won’t be terrible, but not even noticing a slow reduction is a common reaction. Going from something to nothing can be a little difficult, but the rewards may be considerable. Klonopin is very commonly in use, because benzo’s help so much with the symptoms of increased sympathetic tone and Klonopin is more socially acceptable than Valium or Xanax, even though the later drugs are actually more effective in the short term. In practice I used to see epileptics desperate to get off Klonopin because of cognitive decline and depression. I’ve posted the references before (CFS treatment myths). This is not a value judgment, having been on both sides of this problem.
I don’t want to turn this into a discussion of Trine Tsouderos, but mentioning her generated so much heat that it can’t possibly be about her. Her stuff is accurate, if a little slanted, not that bad, even with respect to us. I speak to other reporters who think she’s competent. “She makes the calls, asks the questions and writes down the answers”, one said. None of them profess to understand the science deeply, though some do more than others, but that really isn’t the point. They ask somebody what they think and quote them. Then they ask somebody else who disagrees and quote them. They’re not supposed to write what they think. Their personal bias shows despite their best efforts, because they choose who to quote and which quotes to lift at random, but nobody really thinks their opinion is important. The anger that Tsouderos generates seems important though. She is parroting scientists and doctors whose interests don’t extend to helping us, like Offit, who has made lots of money on his vaccine and been hailed a hero, but can’t or won’t face the possibility that the vaccine program may have hurt millions of people, even while saving others. I don’t think it’s about Trine. She’s the messenger. Lois Lane, who can’t figure out that Clark Kent is really Superman, even though she’s standing right outside the phone booth. It’s the people who tell her what to think that are the problem, because she truly doesn’t think for herself, and isn’t being paid to. Some of the people she talks to are evil and, even if they’re not, they are without compassion. That’s what hurts. There is something cold about the way she approaches the problem, hiding behind “the evidence”, largely absence of proof, while ignoring the evidence of millions of suffering people. Clearly her editors are more concerned with pleasing scientists and doctors than patients, who they see as powerless.
I am struck by the occasional angry outbursts from scientists, who have been reading and feel the need to say I’m wrong about everything. I feel like an Aikido student deflecting energy, because I really do want their input. Why all the anger? Because you disagree with me? Because my medical mind skipped a few steps in your deductive reasoning process? You couldn’t possibly think I’m wrong about everything. The most important thing that is happening here is the discussion about the clinical problems. Why not contribute to that in a constructive way? Because I’ve painted a picture that makes the ivory tower look like the Leaning Tower of Pisa? Why should you be protected from the patients who are the reason for the work? If the science is a nay, then everybody can go home and forget about all these difficult patients again, just like before? We can’t let that happen this time. If the first attempt to find the causative retrovirus has revealed the tip of a very large iceberg, burying XMRV doesn’t get anybody off the hook. Give it up, get to work and find the truth for us. We need your help. I know that there are very good scientists out there who really wanted to find XMRV and haven’t been able to. Neither were Drs. Alter and Lo. They found something else of significance. Please don’t give up.