Sunday, October 18, 2009

ACT, MED, NOT, RES: XMRV — Armchair Observati ons

XMRV =97 Armchair Observations

by John Herd
johnherd@johnherd.com

I've spent most of my life around medicine. Many in my family were in =20=

medical fields and dinner table talk more often than not was about the =20=

science and politics of medicine.

In my career I worked directly with medical researchers and their data =20=

from initial discoveries, through grant applications, further =20
investigation, publication, and often a decade of seeing the involved =20=

science mature in the scientific evolutionary process.

What this has taught me is that as concrete as an initial finding may =20=

be, it may not be inclusive of the whole picture nor even as it =20
appears under the stringent scientific microscope of the time.

Sometimes a fuller understanding of the matter only becomes clear when =20=

other seemingly disparate pieces of the vast discovery puzzle are =20
realized and multiple pieces of that puzzle are put together.

If one is sitting in the front seat of a roller coaster one can see =20
that one is about to rise up very high, plunge frighteningly downward, =20=

or rush around a seemingly physics defying corner. As the G-forces and =20=

adrenal charges are feeling all consuming one is not apt to =20
necessarily see the ferris wheel to the east, the merry go round to =20
the west or the little girl getting cotton candy to the south.

Such is also often the case when an important scientific discovery is =20=

made. Investigators and interested parties may be so absorbed by the =20
discovery and the initial excitement that they temporarily lose sight =20=

of how much more still remains unknown. This may not be a phenomenon =20
of myopia at all, but rather the very human natural gravitational pull =20=

of the excitement of new discovery.

While the Whittemore-Peterson Institute's discovery of XMRV presence =20
in so many ME/CFS patients is definitely very exciting, the discovery =20=

may be raising as many if not more new questions than it answers.

Here are but a few, all be them very important frontiers of discovery, =20=

that investigators will have to travel into before we can fully =20
understand the XMRV role on ME/CFS.

Given that XMRV is an acquired retrovirus shown in the Whittemore-=20
Peterson Institute findings to be infecting ME/CFS patients, why is it =20=

infecting such a huge percentage of ME/CFS patients and not other =20
people in the healthy public? Are some other factors, genetic or =20
otherwise still unknown factors, causing people afflicted with ME/CFS =20=

to be more susceptible to XMRV infection?

What are the full cascade of biologic events that the XMRV causes, and =20=

do they explain the full spectrum of biologic dysfunctions recognized =20=

as being physiologic components of ME/CFS? How do other types of =20
infections such as HHV-6 or 7, EBV, CMV... that have been observed in =20=

subsets of ME/CFS patients fit into the equation?

How does the XMRV damage various body systems, can the XMRV be =20
eradicated or turned off, and if so can the various kinds of damage to =20=

the body systems be repaired, thereby eliminating ME/CFS symptomatology?

What of ME/CFS patients who may test negative for XMRV and yet have =20
many of the hallmark biologic symptoms of ME/CFS? If not XMRV what is =20=

causing their illness?

Is the XMRV a component of other yet untested medical conditions, and =20=

if so is the physiology of response to it in other conditions the same =20=

biologic response as that observed in ME/CFS patients? If not why? If =20=

XMRV is found to be a component of other conditions, similarities and =20=

differences in how it causes symptomatology in other conditions may =20
garner further insights into its role in ME/CFS.

These questions alone represent huge frontiers of investigation yet =20
untraveled into. This is why I made a donation to the Whittemore-=20
Peterson Institute despite it meaning that I will have to live on =20
rice, soups and other leftovers for the last week of this month.

Undoubtedly many investigators around the world will be and must be =20
involved in exploring all these frontiers.

We as patients must financially support those investigations so they =20
can take place. The more those frontiers are explored and mapped the =20
sooner we may have better healthier lives. And in the meantime many =20
other aspects of ME/CFS research must proceed as well.

Please give until it hurts because doing so may lead to ME/CFS hurting =20=

a lot less down the road.=

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