Tuesday, December 08, 2009

Damage Control in ME research?

Has the CDC Placed XMRV Research with Its Division of HIV/AIDS Prevention?

Original Article HERE

December 8, 2009

The following was posted Dec 7 in ProHealth’s ME/CFS Message board, and appears on a number of ME/CFS blogs. At this writing we have not seen an official statement/source that would verify this statement. The post is attributed to Dr. Timothy Luckett, and the cited source is The CFIDS Research Blogspot.

To Quote:

"CDC Damage Control: ME/CFS Research Group Relieved of Duties"

In a stunning move, responsibility for XMRV research has been taken away from the ME/CFS working group within the CDC, and re-assigned to the division of HIV/AIDS prevention. This group will be in charge of replicating findings of the Whittemore-Peterson Institute, rather than the group under the control of Dr. Reeves. The move is highly significant: it appears that the CDC is now acknowledging the serious nature of XMRV.

The CDC will be part of an interagency working group on XMRV, led by Dr. Jerry Holmberg. A three-part study will be initiated:

1. The first part will consist of standardizing and validating laboratory methods and reagents for XMRV testing. This stage will use samples provided by samples collected by Dr. Judy Mikovitz. The intention is to create an FDA approved test.

2. The second part will test a much larger sample than the initial study, trying to determine the prevalence of XMRV in the general population, and the blood supply.

3. The third part will consist of how XMRV is transmitted, how it causes disease, and how it affects various subgroups of the population.

The forceful demotion of Dr. Reeves is a sign that the CDC is in damage control mode. The HIV/AIDS prevention group in the CDC has many capable retrovirologists, who can provide years of expertise. In my opinion, this turn of events should lead to balanced, common sense research.


The research conducted by Dr Judy Mikovitz for the Whittemore Petersen Institute has generated a lot of excitement in the ME Community as she has isolated a retrovirus called XMRV in blood samples of 92% of ME sufferers.  People are cautiously hopeful that this will lead to a reliable diagnostic test and hopefully a treatment that really helps.  Here is what the Press have been saying about the discovery of XMRV

All we have so far is Cognitive Behavioural Therapy or CBT, which is a talking treatment that tries to get the patient to cheer up about the way ME takes over all their lives and which has limited efficacy in the short term and none in the long term, or Graded Exercise Therapy which in not as innocuous as CBT.  It requires a very skillful practitioner with the patient at the right stage of the illness and it has to be very gentle indeed, perhaps starting with sitting up in bed with an extra pillow for two minutes at a time, building up tolerance over months.  As that is so rare, experienced people warn that it does not help ME patients and frequently makes them a lot worse.  After GET, people who could use a wheelchair for a few hours a day may deteriorate to being totally bedbound, in a silent and darkened room, too weak to talk and having to be tube fed as they are too weak to eat, having to be washed and toileted like babies, and it can continue for decades.  

It is for these reasons that the ME Community is hoping, hoping, hoping for some light at the end of the tunnel.

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