As far as the Patient Advocate can discern, Amy Marcus of the WSJ has attended all the major XMRV ME/CFS events -including the August XMRV one-day conference at the Whittemore Peterson Institute in Reno, the CFSAC meeting in DC and the recent FDA Blood study advisory group in Gaithersburg, MD. Amy Marcus' background orients her towards science and its application to disease. Why she has this "inclination" is anyone's guess. This inclination of hers - this instinct to commit to a fascinating story with fascinating people - is going to greatly benefit ME/CFS patients. Amy Marcus is doing the most of any person in the journalist world to promote both an awareness and a serious discussion of these important disease issues.
All this is going to assure one thing: Amy Marcus is going to win another Pulitzer prize for her coverage of XMRV and XMRV-related illness. Because the government has put the kabash on research into this illness, progress is slower than it should be. For her storyline to take hold, the research must advance to the point where she will be able to characterize the illness with patient, advocate and clinician interviews. Once that occurs, and it is not going to be in the far distant future, she will have the human element that she needs to elevate this story - the human suffering, emotional toll, salvation, and redemption. Reporting on absurd scientific squabbles has only so much human interest quality. It is the patient' and their suffering that are of interest, and her story line needs to get there for her efforts to reach the level of profundity - and win her another Pulitzer. Let's wish her well.
This letter went unpublished.
In response the Patient Advocate received this email (with attachments).Dear Professor Cairns:
This chronic fatigue stuff gets people all riled up. Some people think there's enough proof to start taking retovirals but most experts don't. The writer doesn't seem to get that the two studies he cites found two different viruses so they can't be supporting each other. And Lipkin is not in fact just confirming the september study.
Let me know if you need any more help on this.
Hey Carl, I need to reply to this reader ... can you give me any guidance? Thanks, David
The Patient Advocate first question was to wonder if this "science" writer thought two retroviruses in these patients was less frightening than one. Noting the difference in bias, literacy and tone from the WSJ, the PA started to write a post on this, but his daughter and son prevailed on him to try to use the "opening" to get their attention. So the PA wrote the following:
Dear David Corcoran,
Thank you for your response. I’m very gratified to hear that The Times intends to stay on top of the XMRV story. It is a complex and compelling one, with ramifications for many.
ME/CFS is a severe, debilitating illness that is estimated to affect at least a million people in the United States, so it is not surprising that people get “riled up” about it, as your colleague rather flippantly puts it. It appears to be increasingly likely that it is caused by one or more retroviruses, that it is contagious and that it is in the blood supply.
The impatience for treatment options on the part of those with ME/CFS is akin to that reported in today’s Times Week in Review article about delays in identifying the efficacy of Truvada as a prophylactic treatment for AIDS. There is concern that once again the delays in substantiating studies and approving treatment will be caused by “a combination of scientific caution and fiery politics.” Like AIDS, ME/CFS is surrounded by longstanding prejudices directed towards those afflicted - and there is currently no approved treatment.
Those who follow XMRV research closely know that two variants in the same virus family were found in humans in these two studies. Whether you call it XMRV or PMLV it is still a gamma retrovirus closely related to MLV propagating in humans. Dr. Harvey Alter himself stated that the Lo/Alter paper supports the Lombardi results – and XMRV has been now found in all of Alters’ own samples (by Ruschetti).
The Wall Street Journal has been covering the XMRV development regularly over the summer and fall. Their most recent article is here. It might be useful to compare your coverage.
The viewpoint that I expressed in my original letter furthers the discussion of these issues, and should be published. The NY Times - known for its journalistic even-handedness – should avoid the appearance of bias in a matter of such importance.
This effort did not reach a form of "realization". It was what they call "a waste of time". The NY Times has displayed once again why it is going down the tubes.