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

The Train is Moving

(Another guest blog from Tina Tidmore)

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.
  • The CDC participated in a pathogen study, found nothing, although it was just plasma.They recognize that it is 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 the panelists 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. From some of their comments, I have concern about one, but the others are on board. That one, I think will come around. So, those who understand the illness are still in the majority. And they are speaking up too.

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 went 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. The new ones need to know this and the old ones need to be reminded at every meeting.

Additionally, 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.


Unknown said...

A wonderful summary, thank you so much for posting this that we can see all the great progress!! I truly appreciate that you were there on our behalf!

Courage Times Three.A Novel said...

Marly, once again you have come through for us with grace and dedication. How can we thank you enough.

Having free access to these meetings is a Godsend. Getting the jist of where the govt is at regarding our illnesses is a powerful tool to assist each of us in our quest to improve our health. Getting this physician primer out to all providers is crucial in moving forward with treatment and understanding.

Unknown said...

Thank you Tina, it sums it all.

Anonymous said...

thank you, tina, for writing this all up for us. -- rivka

The Pained Ink Slayer said...

TY Marly and Tina, a nice concise overview. I will be sharing a link to this blog in this week's KaleidoPain News: Every Changing Colors of Chronicity at http://fmcfstriggerpoints.blogspot.com/
In healing, harmony and hope, Celeste