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?