October 2009 CFSAC Meeting

I watched/listened to almost all of the 2 day CFS Advisory Committee meeting held on Thursday and Friday of last week. Others have already written a much more in depth commentary, so I am only going to give what were the highlights for me as I remember them. Please feel free to let me know if my memory is incorrect at any point -- it's been a week now so the whole thing is sort of muddled together in my mind already. :)

The meeting opened with a brief and rather dull update from Social Security Administration. They are trying to make it easier for people with ME/CFS to file claims, they said. Dr. Nancy Klimas pointed out that she has never had a single patient who hasn't been initially denied disability. The SSA did not offer much in response.

The meeting then moved on to a talk by Dr. Eleanor Hanna of the NIH, whose discussions again seemed to me to lack much depth. She appeared to have little knowledge on what the NIH is presently doing to move the XMRV research forward, and only projected on what they might be able to do in the future.

Dr. Hanna stated that the NIH will issue a new Request for Applications (RFA) on CFS in the next year.

It was also noted at some point that the NIH did award a $1.6 million grant to Whittemore Peterson Institute (WPI) Research Director Dr. Judy Mikovits and collaborator Dr. Jonathan Kerr of St. George’s College in London. The WPI's website states that "this 5 year grant will provide critical support for the ongoing research into the causes and diagnosis of neuro-immune diseases."

I believe it was Dr. Hanna who also pronounced that, at this point, the NIH feels it is still safe for those with CFS to continue to donate blood. There was strong disagreement about this. The National Cancer Institute has already said that, given the latest XMRV findings and the possibility of its transmission through blood, CFS patients should not donate at this time. Dr. Peterson and the CFSAC panel seemed to agree, pending further research.

Due to the confusion and importance on this matter, a representative from the DHHS was called in to speak on the 2nd day of the meeting. He stated that they are working with the WPI to investigate the matter further, and they hope to have more answers in a matter of weeks.

Dr. Mike Miller of the CDC commented that they are excited by the XMRV findings and are currently attempting to duplicate the results. Not surprisingly, they will be using their Wichita, Kansas and Georgia study participants to do so. Both Dr. Jason and Dr. Klimas pointed out that this will make it difficult for them to replicate the findings, given that their infamous Witchita/Georgia cohort was a mix of "unwell" patients, and not necessarily those with CFS. Dr. Miller then assured the panel that they are taking split samples from the WPI to study as well. This seemed to come as a surprise to the WPI, as neither Dr. Peterson nor Annette Whittemore knew anything about it.

It was good to hear that Dr. Reeves, who heads the CFS division at the CDC, will NOT be the one in charge of trying to duplicate the XMRV results; it will instead be the HIV/retroviral lab. Dr. Reeves, who incidentally was not at the meeting, is well known for having no interest in looking for a biological marker in CFS. Many pointed out how Reeves inappropriately made a public statement that he already feels they will not be able to duplicate the findings. As someone on the panel noted, "you can't find what you are not looking for." I was therefore quite relieved to hear the job is being handled by the retroviral lab instead.

Okay, now on to the more exciting stuff. :)

Dr. Daniel Peterson, who has studied CFS since its first known outbreak in the U.S. back in the early 80's, gave a fascinating presentation of the recent XMRV findings in ME/CFS -- providing data that was at once compelling, disturbing, and hopeful. He pointed out that XMRV was not only found in the large majority of CFS patients (I believe now up to 95%) studied from different regions in the U.S., but also in the frozen blood samples of CFS patients from 25 years ago. XMRV was also found in some patients with atypical MS, autism and in two identical twins with Niemann-Pick Disease (childhood Alzheimer's), and could have implications in a variety of neuro-immune illnesses. Peterson also stated that the presence of XMRV could explain many of the abnormalities often found in CFS (low NK cells, RNase L dysregulation, co-existing infections, etc), as well as the full myriad of multi-systemic symptoms.

Following his presentation, Dr. Peterson received a well-deserved standing ovation from the audience.

If you missed his presentation, you can view it here:

Dr. Peterson Presentation Part 1

Dr. Peterson Presentation Part 2
Dr. Peterson Presentation Part 3
Dr. Peterson Presentation Part 4

(Note: I haven't actually watched any of these video clips, so I am not sure if the presentation is in its entirety).

Retrovirus expert Dr. John Coffin of Tufts University also gave a fascinating discussion about the latest findings. He mentioned that many virologists are excited to pursue further studies on XMRV and will divert funds from other projects into XMRV research instead. That was great news to hear, as the more research that is done, the faster we get validation, understanding of how the virus works, and (best of all) more ideas on potential treatments.

Dr. Coffin also talked a bit on how the virus may have crossed over from mice to humans, and mentioned how little we actually know of this specific retrovirus at this point. Is it causal or just a co-existing factor? What effect does XMRV have on the body? How is it transmitted? Much more needs to be learned.

Dr. Coffin noted that XMRV appears to be more similar to feline leukemia than HIV in terms of its slow mutation rate. This means, according to Coffin, that it may be harder to find an antiviral treatment for it as compared to HIV. However, it may be much easier to find a vaccine. Much more research is needed to answer these questions.

The good news, to me, is that there are already existing drugs that could potentially be used as treatment -- drugs that have already been well tested for safety.

Coffin warned against labs that are already claiming to test for XMRV. Currently, the only lab affiliated with the WPI and qualified to test for the retrovirus is VIP labs in Reno.  The current cost is about $650.  It is hoped that a more widely accessible test will be available in the very near future.

Dr. David Bell, a pediatric CFS specialist, also gave a presentation. He described some heart-wrenching cases (as recent as this year) where 2 different children were out of school, bedridden for months with mono-induced CFS. Shockingly, the parents were subsequently accused of abuse for keeping their kids out of school for such lengths of time (allegedly inappropriately denying their children of an education, as CFS was not seen as a legitimate reason for their child's prolonged absence). These parents actually had to fight for custody of their children, spending up to over $100,000 in legal fees. Dr. Bell emphasized the plethora of scientific findings showing a clear biological pathogenesis in CFS, and stated that there is no evidence whatsoever that CFS is in any way a result of child abuse or childhood trauma.  

It was a bit absurd to me that we even have to make that point to anyone in this day in age, but such is sadly the case.

Over the course of 2 days, a total of 3 hours were devoted to patient testimonies. Some in person, some by phone, and one (in my case) by video. Speakers included Annette Whittemore, Marly Silverman, Janis Bell, Staci Stevens, Dr. Ken Friedman, Kim McClearly, Robert Miller, Courtney Alexander, Cort Johnson, Meghan-Morgan Shannon, Michael Dessin, myself :) and many people whose names I regretfully do not recall. The testimonies all told of loss, frustration (and at times anger) at the CDC and NIH, as well as the need for change, research, education and Centers of Excellence. All spoke with eloquence and emotion, and many of the testimonies brought tears to my eyes.

Watching my own video testimony was of course a huge highlight for me! It had been a year long goal of mine, and was so rewarding to see it finally come to fruition.

To view some of the other testimonies I was able to find on youtube, click on the names that are hyperlinked above. I hope to add more as they become available (or when I have more energy :)).

For a written version of some of the testimonies, please visit: http://www.hhs.gov/advcomcfs/meetings/presentations/091029.html

Much of the last day was devoted to discussions on recommendations to make to the Secretary of Health. Some of those recommendations included new leadership (Reeves must go), elimination of the empiric definition of CFS (which is too vague), the need for Centers of Excellence, and review/prioritization of the CDC's 5 year plan. The final version of those recommendations will surely be available online soon, and I will try to link them here when that happens.

What does all this mean? Will anything actually come of this? I couldn't help but think how we were all sort of preaching to the choir; that is, the CFSAC panel (made up of various CFS specialists and advocates) is already fully aware of how devastating CFS is and what all the issues are. They hear our stories and all the presentations and then go on to make recommendations to the Secretary of Health based on what we tell them. And then.... well, nothing. Nothing ever happens. We never hear back from the CDC, the NIH, or the Secretary of Health. None of the recommendations are ever really implemented. They, to date, have fallen on deaf ears.

However, many who have attended other meetings in the past have noted that this one was the best by far, and there is a lot of optimism in the air! One can only hope with the latest ground breaking XMRV studies that, this time, our voices will finally have to be heard.

What can we do in the meantime? Once the CFSAC recommendations have been formally written and submitted, we can all write to the Secretary of Health and urge her to take action. The CFIDS Association of America typically sets up a form letter to make this easier for us to do. Keep an eye out for it at: http://www.cfids.org/advocacy/alert-digest.asp

For those who may have missed the meeting and would like to watch it in its entirety, you can see both days on the NIH website at:

Day 1: http://videocast.nih.gov/launch.asp?15408
Day 2: http://videocast.nih.gov/launch.asp?15409

Much thanks to the CFS Advisory Committee for all their years of hard work!! And of course, much thanks to Dr. Peterson, the WPI, Dr. Coffin, Dr. Bell and all who spoke or testified.  Last but not least, an enormous amount of thanks and praise goes to Dr. Judy Mikovits,  the lead scientist at the WPI whose dedicated work led to the discovery of XMRV in CFS.  Though she was unable to attend the CFSAC meeting (she's in high demand at the moment), it was clear the amount of gratitude felt towards her by all in attendence.

Well done, everyone!!