More on the Predecisional Draft Report on MCS

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From Immune List:

From: Albert Donnay <adonnay@...>

Organization: MCS Referral & Resources

Subject: Re: [OEM] MCS -> Status of Federal Report

Comments: Carolyn Archer <archerc@...>

Paper copies of the federal " predecisional " draft report on MCS are still

available

from ATSDR, 888-422-8737 (all federal web site links to the draft report

have been

removed, however). Ironically, the report is only available from ATSDR,

which no

longer has a representative on the Workgroup, and not from any of the 7

other

agencies that still do have representatives-- EPA, NIOSH, NIEHS, CDC/NCEH,

DVA, DOD,

and DOE. (my apologies to people who don't know these abbreviations, but I

don't want

to type them all out. please email me privately if you really want to know)

ATSDR's only representative (the co-chair, Dr. Barry ) retired last

December

and has not been replaced on the Workgroup by his replacement at ATSDR,

McCumiskey, the acting administrator. ATSDR also reassigned the

Workgroup's

executive secretary and only staffperson, Dr. Lester .

According to the remaining co-chair (Dr. , director of CDC's

National

Center for Environmental Health), the workgroup has not held any meetings to

review

the public comments it solicited last year, it has no plans to schedule any

such

meeting, and it has no plans to complete a final report, which he says none

of the

agencies are under any regulatory or other obligation to release. According

to

another workgroup member, the fate of the report is now up to Surgeon

General Satcher

and Dr. Shalala (head of NIH).

Also not yet completed--but at least still moving forward--is the

investigation begun

last year by the General Accounting Office (and turned over in January of

this year

to the Inspector General's Office of the Dept. of Health & Human Services)

into

allegations filed by MCS Referral & Resources that the " consultant " hired by

Dr.

to write and edit the report, Dr. , was hired

illegally.

Our complaint alleges that Dr. was hired:

1) without a written contract from ATSDR or the MCS Workgroup

2) without disclosure of the conflict of interest posed by his simultaneous

membership on the board of directors of the chemical industry's

Environmental

Sensitivities Research Institute ( claims he gets no benefits from

ESRI but

his free membership alone normally costs $10,000 per year; most of the

paying members

are chemical manufacturers and insurance companies), and

3) with funds misappropriated from an ATSDR postgraduate fellowship program

for which

he clearly was not eligible. Just months before Dr. was hired by

Dr.

to write the first draft of the MCS report in 1995 (which the Workgroup

claims it has

now lost), he had retired from a long civil service career at ATSDR--he'd

been the

chief medical officer since 1987--and he was already an associate professor

at three

major universities: at Emory since 1991, Mercer since 1990, and the

University of

Alabama since 1985. Not bad for moonlighting off a fulltime government

job!

His fellowship also was most atypical in being awarded 31 years after he got

his

doctorate. And it is the first ever given by ATSDR to a Doctor of

Osetopathy!

The interagency workgroup operated unusually in several other respects: it

met

privately for 4 years, never announcing its meetings or opening them to the

public,

not keeping minutes from most meetings and not even keeping agendas or

attendance

from some.

The Workgroup also never solicited any input from MCS patients, MCS

clinicians, MCS

researchers, or the many other federal agencies and committees already

involved in

policy making with respect to MCS and related disorders (such as the CFS

Coordinating

Committee). Over 400 public comments were submitted, however, when finally

solicited last fall.

Both the American Public Health Assoc. and the American College of Occup. &

Environmental Medicine have adopted resolutions urging the government to

complete and

release the report, while some advocacy organizations say it is too flawed

to fix and

should abandoned.

MCS Referral & Resources agrees and has recommended that the Workgroup start

over--with new representatives from all government agencies already involved

in MCS

research (9 by our count) or policy (an additional 14)--and conduct all its

future

meetings in public.

-- Albert Donnay, MHS

President, MCS Referral & Resources, Inc.

adonnay@..., www.mcsrr.org

508 Westgate Rd, Baltimore MD 21229

410-362-6400, fax 362-6401