Dr. C is frustrated....understandably

I had my latest appointment with Dr. C yesterday.  As usual, we spent more time talking about the landscape of ME/CFS research than we did about my own health, which is fine by me.  The man is fascinating.

As usual, everything below is paraphrased, including quotes, and it is always possible I misunderstood something.

D-Ribose: Why it Might Work

We briefly discussed the supplements I'm taking other than those he recommended.  I mentioned D-Ribose.  He said he'd been thinking lately about why D-Ribose seems to be helpful for so many patients.  He believes that it supplies a substrate that the enterovirus is consuming.

Ribose, he says, is a precursor of nucleic acid—the body processes it to make nucleic acid. Deoxy-ribose goes into DNA, and Ribose goes into RNA. The viruses sit on the mitochondrial membrane and, from there, they "suck in" whatever they need in order to replicate, including ribose.  So he believes that when we take D-Ribose as a supplement, we are replacing the Ribose that the enteroviruses rob from our cells.  Otherwise our cells become depleted of Ribose.

The Slow Development of ME/CFS Treatments

We next discussed his experiences sitting on the "Treatment" panel at the IACFS Conference a couple of weeks ago, along with four other respected clinicians, including Dr. Klimas.  The panel presented hypothetical cases of ME/CFS patients to the audience of physicians and asked how they would treat those patients.  While opinions varied, there was a general consensus surrounding just four treatments, all simple supplements: Vitamin B12, Vitamin D, Coenzyme Q10, and Magnesium.

Dr. C looked at me exasperated and said, "This is 30 years down the line [of ME/CFS research]. And that's all we got!"  His frustration on behalf of patients was remarkable.  He gets it.  

                                                                        On Valcyte

Dr. C mentioned that one of the presenters at the Conference (probably not the one you're thinking of) is always a big proponent of Valcyte.  When a patient has "high" HHV-6 antibodies, this doctor prescribes Valcyte.  Dr. C said that he does not agree that Valcyte is effective for the treatment of ME/CFS, and does not agree that the HHV-6 antibody numbers he sees in ME/CFS patients are indicative of HHV-6 being a cause of ME/CFS.  "In reality, the antibody numbers aren't that high," he said.  He also mentioned his belief that the toxicity of Valcyte makes it not worth the risk.

On a personal note, I have a few friends who swear by the effectiveness of Valcyte, so I'm not saying I agree with Dr. C.  As with everything here, I'm simply passing along his opinions.   

Dr. C's Frustration

If you've read my past blog posts about Dr. C, you know he basically believes he has proved (my word, not his) that ME/CFS is caused by enteroviruses, but he can't get anyone interested enough in his work to try to reproduce his findings.  He said that several patients asked him in open session at the Conference, "why hasn't anyone reproduced your work?"  He said he responded honestly: "I guess they don't think much of it!"

He also expressed frustration that researchers are still wasting time looking for viruses in the blood of patients. The viruses are cleared from the blood very quickly and take up residence in the tissues. Therefore, he believes any "virus hunting" will be futile unless it focuses on tissue biopsies.  

Hope

Drug companies have to spend at least a billion dollars to research and develop a new drug for an ailment.  No drug company, he says, will ever be interested in investing that kind of money unless/until there is consensus about what causes ME/CFS.  (Implicit here was that if someone would just try to reproduce his findings, they'd see that he is right and progress would start to move very quickly.)

At the Conference, however, two groups finally came forward and expressed some interest in looking into his enterovirus work: one was WPI and the other was a geneticist and molecular biologist from Cornell University, Dr. Hansen.  But in both cases, they wanted to work off of Dr. C's tissue samples, rather than collect samples of their own, which I suspect will reduce the value of any of their conclusions.  Dr. C seemed cautiously optimistic about this. 

He also mentioned that the Centers for Disease Control (CDC) has recently become "interested" in studying his samples.  To my surprise, he said that if he had a choice, he'd most like to send his samples to the CDC.  "This is what they do best," he said.  They have enormous labs, teams and resources that are probably the most capable of following up on his work.  

As part of this discussion, Dr. C also stated that when he tests tissue samples of patients after they have been on Equilibrant for a while, they no longer find the RNA that is indicative of enterovirus infection. This is why he believes so strongly in the ability of Equilibrant to suppress (but not eliminate) enteroviruses in ME/CFS patients.  

Dr. C also said he spoke with Dr. Lipkin at the Conference, whom he praised highly and called "very, very impressive." Dr. C believes that Lipkin has an open mind and is interested in Dr. C's theories.  If he can get Lipkin to follow through, it could be a huge breakthrough because Lipkin apparently has the lab, resources, funding, name recognition and support to make a much bigger impact if/when he confirms Dr. C's research.  

Dr. C believes that, while Lipkin previously looked for viruses in ME/CFS patients, he did not (I'm paraphrasing heavily here) calibrate his instruments with sufficient sensitivity for RNA.  The implication was that, while Lipkin's results were useful for ruling out a number of potential viral causes, they do not rule out Dr. C's enterovirus theory.  Dr. C said that the head of Lipkin's lab later told him: "whatever parameters you want us to use, we'd be happy to do it."  Dr. C seemed hopeful about this.  

                                                                       Gamma Interferon

Dr. C was also eager to discuss the research results (which he said are not new) that ME/CFS patients who have been ill for less than 3 years have levels of Gamma Interferon that are 1000x greater than the average person.  Gamma Interferon is a protein that the body produces to boost the immune response.  He said, "you can imagine what all that Gamma interferon does when it floods different areas of your body, like the brain."  

"When we finally learn how to shut down the excessive Gamma Interferon response, that's when you will start to feel better." 

For unknown reasons, the levels of Gamma Interferon tends to drop off after 3 years, and yet patients remain ill.  He has noticed however, that the three year mark is often a transition point for many patients, where they stop having "viral symptoms" (i.e. sore throat, swollen lymph nodes, etc.) but often descend into a deeper state of fatigue.  He theorizes that the immune system, even in its weakened state, eventually wears down the viruses enough so that they no longer result in "viral symptoms."  But at the same time the immune system itself becomes worn down.

Automimmune Characteristics

He also gave an acknowledgement to Dr. Rose's findings that, as time goes on, ME/CFS patients become more and more likely to develop co-morbid autoimmune diseases.  Tying this into his own theories, Dr. C believes that the protein emitted by the double stand RNA enterovirus is what the immune system attacks.  Over time the RNA will mutate and the protein will change.  Given enough time, it's likely that the protein will sometimes evolve to resemble "self."  Now the immune system starts attacking not only the RNA protein, but you.