Well-Come to Agent for Change, a blog created by Marly Silverman, to serve as a catalyst for change that is much needed on the issues affecting millions of individuals stricken with neuroendocrineimmune disorders worldwide. Through this blog I want to share ideas, exchange, communicate and find solutions for everyday living. The goal is to pursue quality of life that will make a difference in the lives of individuals with neuroendocrineimmune disorders (NEIDs).

Thursday, June 14, 2012

For years, the CFSAC seemed to be stuck in stagnation. Ex-officios seemed not too interested, nor did they appear creative. Committee members felt much frustration. The hardest part is getting the train to move from inertia. A lot of fuel is needed to move such dead weight into action. 

However, two years ago, the XMRV claims provided the fuel that got that CFSAC train going. It's slow, as it leaves the station. The question is, who will answer the call "All aboard"? So, what movement is being shown in the government agencies as revealed in the June 13 CFSAC meeting?
  • The FDA has 8 applications. Two are from private companies and the others are from investigators.
  • Lipkin study on XMRV will be published within a few weeks as a "white paper" and then as a peer-reviewed paper.
  • Some CFSAC members also criticized the CDC toolkit.
  • CDC has made some changes to their website and will be doing more. They will be adding a section on pediatrics.
  •  The CDC is looking for ways to continue a dialogue with patient organizations. They have met with many in the last year.
  • They participated in a pathogen study, found nothing, although it was just plasma.They recognize that is it not conclusive on the pathogen question. They are working with 7 well-known ME/CFS physicians to do research on their patients. They discovered an abnormal response in the brain of ME/CFS patients in research that was presented as abstract at a conference.
  • CDC is creating a CME course for clinical care that will be finished on June 20 and one on CFS and sleep that will be available on July 8. They worked with some well-known ME/CFS physicians to do this. the CDC will be working with the Center for Advance Professional Education company to come up with a curriculum for medical school.
  • The Assistant Secretary of Health Dr. Howard Koh is wanting to improve communication with patient organizations and have their representatives on the committee.
  • The FDA has centralized where the CFS applications go and have educated those who review them. They received the CDC toolkit, but they also received the IACFS/ME Physician Primer.
  • Koh arranged for an ad hoc committee of government agency reps. to have meetings on what they can do for the patients with this illness. A national webinar and a national patient registry have been discussed in those meetings.
  • Live videostream of the meetings returned, despite the continued financial cuts in the DHHS.  
Besides these progress reports, a new arrangement happened where a panel of patients had a dialogue with the committee. The committee members could ask these teenagers and a parent of an ME/CFS patient questions and they could ask the committee members questions. As far as I can remember, this is a first and shows an openness to patient concerns instead of defensive posturing. 

We all were very concerned with the new members, especially with the loyal and vocal Dr. Nancy Klimas, Dr. Chris Snell and Dr. Lenny Jason all leaving at the same time. However, these new members got a crash course today with a wonderful look at the biological findings in ME/CFS pediatric patients, as described by Dr. Peter Rowe. And they got to know the extreme injustice and suffering - not only from the disease but from an ignorant and uncaring system - as revealed in the moving testimony of some of the young ones and their parents. 

Tears flowed when the mother spoke of her daughters and the struggle to get the accurate diagnosis, and then find out the proper treatment and also make sure they get an education. As one slap in the face after another, or one injustice after another, the woman sitting to might right said, "Oh my God." And the woman sitting to my left said, "Oh God." Back and forth they want as the family's tragedy was told in all its gory details. Certainly, while we hear these stories again every time, CFSAC members must be reminded that this is not play. We are dealing with life and death here. They need to know that even in America, the sick are being mistreated and they must stop it. These stories give them the motivation to act with courage.

In acting with courage, they will be imitating some of the patients themselves. As the first one on this day, first time for her to give testimony, spoke boldly, even shocking some in the audience. This slender and petite woman, did not shrink back or filter her words. Her trembling from the situation only showed how great her passion and courage was to stand up and declare a wrong has been committed.

The fears of the new members seem to be unnecessary as seen from some of their comments. During the breaks, I got to speak to some. One of the new members told me he thinks he might need to call some of his former ME/CFS patients to suggest helpful treatments he learned at the meeting. They get it, or they are getting it.

Even Dr. Gaillen Marshall, the new chair, made a striking opening remark. He acknowledged the concerns some had in his being in the chair's seat. He said he sees holistic, integrative and personalized care as being applicable to this disease. "Most diseases are syndromes," said Marshall. He said cancer, diabetes and others are one disease, but with subgroups. "Not all have the same symptoms, even if they are the same disease," Marshall said. While other diseases have seen much progress, ME/CFS patients are still waiting, still asking. After the very profound and deep comments from Matthew Lopez-Majano, Marshall said that they will not grow to be old and have the same disability as they do now with the disease. "There is a light at the end of the tunnel," he said.

Also, new in this meeting, many patient organizations and patients signed a joint letter of concern with four primary objectives and a request to meet with Sec. Sebelius, Dr. Howard Koh and Dr. Nancy Lee. They can no longer say, "But the patients are divided in what they want." Not true. These many patients and organizations found areas where they agree and are pushing for that. 

Importantly, the CFSAC members are considering endorsing the IACFS/ME Physician Primer and recommend it be distributed. How wonderful! Attorney Steve Krafchick asked, "Why invent a new toolkit when you have a primer?" Krafchick said the CDC physician toolkit is very superficial and the treatment section can be taken out.

As this train starts to move. We must acknowledge that action is being taken. But that does not mean we don't need to give more fuel. It is still slow. We want - the situation demands - that the train move much faster. So, patients must still push for more improvements. But, as it moves, it will get easier and easier and the momentum will begin to help it along. To all, patients, organizations and government agencies and the CFSAC, have you answered the call. Are you on board?


Annie said...

Hi. I'm in Australia so am waiting for the videos to be posted and looking around at what I can while I'm waiting (I'm the mother of a 12 year old ill with ME/CFS) Thanks for your summary.

Unknown said...

Thank you Annie! How is your child doing?