Monday, October 11, 2010

Notice of Withdrawal from CFSAC Testimony

I felt that a reason was in order as this meeting was not worth the
time and effort. The following was sent to CFSAC; HHS: Secretary
(HHS) Sebelius, Asst Secretary for Health Dr. Howard Koh, NIH Director
Francis Collins, NIAID Director Anthony Fauci, CDC Director Thomas
Frieden; my Senators and Congressional Representative. 

Jill

----------------

I will not be attending the October, 2010 CFSAC meeting and
I am relinquishing my reserved spot to speak. This meeting does not
adequately cover the important issues or reflect even the
'state of the science' in the science portion.

Last years meeting was stunning, with standing room only
crowd. Dr. Dan Peterson received a standing ovation for
his presentation of the work being accomplished by the WPI,
who had just had their collaborative paper published in Science.
We were all expecting a continuation.  This meeting is a huge step
backwards and right back to business as usual.

Since then, the work has progressed at an astonishing pace. XMRV
is known to be infectious and oncogenic, and associated with
neurologic and immune system abnormalities.  This retrovirus is the
3rd human retrovirus in addition to HIV/AIDS and HTLV (leukemia). 
Even very conservative doctors in the trenches have come out and
said that this is probably the cause.

This meeting does not reflect the seriousness and significance of this
research, and more importantly, the urgency of determining the effect
on public health.

The WPI has done more in a couple of years than HHS has done in over 20,  and it was their discovery. They were not invited. Why?

The WPI has not received any government funding for XMRV research.
Why is this? They have collaborated with well known researchers from other
federal agencies and published in prestigious journals.

Why has there been no intramural research on  XMRV at NIH or NIAID.

Why have there been no expedited epidemiological studies to determine the
incidence, prevalence and mode of transmission of the virus and mechanisms
of pathogenesis?

Why have there been no RFA's (which should have been issued immediately) for
further studies?

Why have there been no clinical trials, when there are effective antiretrovirals
available? Patients have no access to any treatment.

In fact, with federal agencies involved in these findings, why has CDC been not
only ignoring them in terms of policy but going further in the opposite direction.
Why the change to the CDC website to include psychological interventions
as treatment, and GET, which may be very harmful. Why is the CDC's 5 year
research plan still in place, given the strength and seriousness of this
research, and when IACFS/ME (the international professional organization)
had strenuously voiced objections to this plan?

Where are discussions on children? There have been no studies and no
information, and CDC is prominently placing their adverse event studies
on children on the website.

Where is the discussion on funding, which is crucial, as it has been virtually
non-existent in relative terms to other illnesses and given the morbidity and
mortality. 

Where are discussions about CFSAC recommendations, which
have gone mainly unnoticed, or discussions of how to rectify this?

Why is the Assistant Secretary not wanting to participate in or at least attend these
meetings, given the current situation and strength and significance of the
findings and serious implications to public health and safety of the blood supply. 

Patients are suffering, bedridden and some are dying. From our experience,
the illness is  progressive and people are going to continue to get worse
the longer they go without treatment. So literally spending more time on rehab
and vocational training  and cognitive issues than XMRV? You cannot
rehabilitate someone who is seriously ill.
Or to put another way, focus on
proper diagnosis, testing and treatment, which we now realistically have
the means to accomplish, the rest will somewhat take care of itself.

If this committee is not adequately fulfilling its mission and taking up the most
important issues (i.e., a retrovirus and the significance of the very likely role
it plays in this illness), then as a community we must address them elsewhere.

Sincerely,

Jill McLaughlin

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