CFS Strategic Research Plan Testimony

[Guest guest]

Herd

CFS Strategic Research Plan Testimony

Over the past to decades I have been involved in

CFS advocacy. It had been my hope that all CFS

stake holders could be encouraged to cooperatively

work together, thereby accelerating advancement in

the understanding of the illness.

Towards that goal I have sat on several Department

of Health and Human Services (DHHS) committees,

worked with many patient organizations, participated

in related conferences, and worked extensively

behind the scene.

Observing the process of medical investigation was

not new to me when I became involved with CFS

advocacy; I came from a career of working with

medical researchers and educators.

For the past 20 years I have observed that the CDC's

CFS program has not sincerely worked at

investigating the broad range of multi-system

pathologic dysfunctions involved in the illness, nor

microbes and pathogens that may be potentially

involved in CFS.

Since the CDC's first involvement with CFS the

agency has allowed internal agendas and opinions

drive their investigations rather than allowing

objective science to drive the research. This is a

corruption of the scientific process.

All too often we have seen narrowly focused and

poorly designed CDC investigations conducted in

such a fashion that they would assure that outcomes

matched the opinions of the CDC's chief investigator.

Repeatedly the CDC's CFS department has

ignored the majority of the world's independent

CFS investigators and their research findings.

Instead the CDC's CFS department has

surrounded itself with a small group of like minded

narrowly focused investigators, then claiming it to

be " an international panel of CFS research

experts. "

In their committees that have shaped their research

diagnostic criteria, they have formed their own

narrow criteria proposals while ignoring input that

conflicts with the CDC's opinions about the illness.

The CDC's CFS department has then deceptively

claimed their diagnostic criteria proposals to be the

product of " international consensus. " It is easy to

reach consensus amongst like minded people. It is

akin to playing poker with marked cards.

Now the CDC's CFS department has created what it

calls their " Empirical case definition " of the illness

when in fact it is far from empirical. For their

observations are only focused upon a narrow portion

of symptomatology that may be present in a narrow

subgroup of patients they define as having CFS.

It is not just independent investigators that find

significant flaws and shortcomings in the CDC's

work. When looking at the symptomatology of

patients in the CDC's studies, the vast majority of

patients afflicted with CFS make comments like,

" those patients don't have the same illness I have, "

or " I couldn't function on the level of those

patients. "

And now the CDC is redefining CFS to be a stress

disorder, again ignoring the bulk of the objective

physiologic symptomatology of the illness and the

majority of independent CFS investigators. The

corruption of science goes on.

Most of the important advancements in CFS research

have come not from investigators who have received

help and/or funding from DHHS, but rather from

investigators who have conducted their work despite

the biased actions and inactions of DHHS in regard

to CFS.

Most medical investigators are not apt to be entirely

candid about the views of DHHS activities pertaining

to CFS. They rely on research funding and are

hesitant to bite the hand that feeds them, or may

feed them down the road. The CDC's " Chronic

Fatigue Research Program External Peer Review " was

not a sincere external peer review unless " peer'

means like minded or unlikely to be candid. Only a

few doctors even took part.

If the CDC wishes to conduct an honesty objective

and forward thinking review of its CFS program it

would request the input of a broader range of CFS

investigators from around the world that represent

the many fields of investigation that are needed.

Without that the process is little more than a white

wash, a token public relations gesture to look good.

There is no point in developing a long term strategic

plan if true experts' opinions and recommendations

are not honestly taken into account. We need a plan

the will be in the spirit of the founding principles of

the CDC, to truly attempt to investigate and gain

understanding of illnesses, to develop treatments for

those illnesses and to keep the public informed

about true empirical information; in essence to

protect the public. The CDC's CFS department has

not and is not doing that. If anything they have

inflicted more harm upon the CFS patient sector with

their actions and lack there of.

Until an honest sincere review and reevaluation of

the CDC's CFS department is conducted, and new

investigators are brought in who will conduct the

kinds of scientific inquiry need, most stakeholders

will not support continuation of the CDC's CFS

department as it has been functioning.

If the CDC is unwilling to bring this about then it is

time for Congress to conduct its own investigation

into the CDC's response to the illness.

Very sincerely,

Herd