Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Wednesday, April 9, 2014

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 acidthe 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.  


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.  


  1. Thanks, Patrick. It's great to see CFS research analyzed in a way that an average person can understand.

    1. Thanks Beatrice. Nice to see you again! You changed your username. Are you no longer in Paris?

  2. Thanks Patrick, you do us a great service in writing this. What you express about Dr. Chia at this recent conference matches my observations

    Chris Cairns

    1. I noticed that too when I read your account of Dr. Chia's speech at the Conference. Thanks for stopping by Chris...

  3. Thank you for sharing this information Patrick! I am ill 21 years with sudden onset ME. I wish some researcher would try to replicate his work. He seems to understand the stages, completely. First I had the worst sore throat for about a year, with horrible muscle and joint pain, literally couldn't add 4+7 in my brain, completely bedridden, pain medicine helped and I could function more but those sore throats were relentless. After about 3 years they simmered down, but the swollen glands continued. The impairment from a 3 hr day has dwindled down to pretty much homebound except for doctor's appointments. The cognitive part feels like real dementia. The kicker, the day of onset I was vomiting before the flu hit me at 3pm. My colon had been so damaged, 3 years ago I was DX with inoperable colon cancer. The pathology came back as inflammatory, my gastrointestinal Dr said "but I know what I saw".

    Long story longer after having a colon resection, I was supposed to find out what happened via famous hospital pathology. NOT, first it was foreign body ( I couldn't get an answer, did I eat a chicken bone), then after more month's of pursuing, I was told it was an immune response. I feel like Dr C, "is that all you've got"? I am curious about the stomach because mine came out of the blue, just like original onset. I also heard Lily Chu say at a meeting, her sore throats aren't a big issue anymore. The PEM, cognition, gut and flu pain get worse, not the sore throats. Anyone else agree, swollen glands and above symptoms more continuous after 3 years with an occasional sore throat?

    1. Thank you so much for sharing your journey. I always learn a great deal from people who have had this illness longer than I have. I'm so sorry for your suffering. I hope others weigh in on their experiences before and after the 3 year mark. Obviously, I can't comment on that yet.

    2. I wish I would have kept a journal. I think it is great advice. I love that you track your symptoms. I may start. It can't hurt. Mine could be for the 20+ year patient to compare with others. I was 33 and literally thought I was dying. Never thought it would be forever. I still have hope. Thank you for an excellent blog. Please pace yourself less than you feel possible. Maybe I wouldn't have been this ill so long if I didn't have to be a caretaker for other's at the beginning. It took like 5 years of constantly crashing before I figured out the pacing part. Now I just feel like the flu, trying to prevent the inevitable crash. Hope you can feel better soon!

    3. Thank you for such a thoughtful response. I will take your advice to heart...

  4. Í think it's the metabolism going into zombie-mode around the 3 yr mark; the-hardly-capable-of-inflaming-anything-viruses have to feed off something right, if they're just sitting there all that time?

  5. Thankyou for posting this very helpful information.
    It would be great if Dr Chia could elaborate on how his theory ties in with the findings of other researchers such as Dr. Carmen Scheibenbogen (deficient EBV-specific B & T cell response), Drs. Oysten Fluge & Olav Mella (Benefit from B Cell depletion using Rituximab), Prof. Sonya Marshall-Gradisnik (reduced NK cell cytotoxicity), Prof. Jonas Blomberg (discovery of Epitomes of microbial & human heat-shock protein 60) and Prof. Julia Newton (abnormal cerebral blood flow & muscle Ph).

  6. Love this post. I made an appointment with Dr. Chia for August, not sure I'll be able to make the journey, but I'm hopeful. I just started prednisone as a test, but now wish I could test gamma interferon before the steroids potentially dampen down my immune system. I started D-ribose on a half scoop for two days and, as soon as I increased to a full scoop, I had severe blood sugar crashes a few hours later. I had to stop and it is such a disappointment! I had high hopes for that supplement. Had Dr. C ever asked if he could do a biopsy on you? That might be one procedure for which I would volunteer!

  7. So interesting! Thanks for sharing :)

  8. Sorry to hit you up for more info, Patrick. Can you think of a good area close to Torrance, CA where I could look for a rental or hotel for a mold-avoidance experiment?
    The only thing I've never changed throughout my illness is my home and I have an appointment with a Dr. Chia in August. I was thinking I could stay somewhere nearby for a week or two to see if I feel any better, but I don't know the area at all.

    I wanted to stay here but it's only Thursday through Sunday :-)
    Feel free to email me if you want: akaemilo at gmail dot com.

    1. Hi Elizabeth, that's exceiting that you're going to see Dr. C. I hope he can help you.

      As far as where to stay in or around his office, unfortunately Torrance is a flat, landlocked, rather ugly suburb with almost nothing of note in it. I would not stay in Torrance if I were you. Instead, I would stay in nearby beach cities, perhaps Hermosa Beach, Redondo Beach, or Palos Verdes. There is a really nice coastal resort in Palos Verdes called Terranea that you could try, although it is quite expensive.

      Good luck Elizabeth!

  9. Thank you so much! Sorry I didn't see this sooner. I still don't know if I'm going to be able to make it to Dr. C. I don't know if it will be worth it. I've been so disappointed by over 30 doctors in Seattle, that I just wonder if FLYING to California and staying in a rental or HOTEL and having to have my HUSBAND come and leaving my DOGS behind ... if it could possibly be worth the energy and money and potential health set back... But I thank you so much for your help and guidance. Hope you are well. :)

  10. Could someone please tell me Dr Chia's clinics email address or web address? Thanks