• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

WSJ / Amy Marcus / Unlocking Chronic Fatigue Syndrome MARCH 22, 2011

Wayne

Senior Member
Messages
4,300
Location
Ashland, Oregon
Thanks for posting this Bob. Another great article by Amy; can't think of any other reporter who's working so relentlessly on our behalf. I especially like the following reference to central nervous system involvement:

they found proteins in the spinal fluid of people with chronic fatigue syndrome that distinguished them from people with Lyme disease, which has some similar symptoms, and healthy controls. The next step is to narrow down the list of proteins to find "the best biomarkers for what is going wrong in the central nervous system...
 

Enid

Senior Member
Messages
3,309
Location
UK
Thanks for posting BobM - very encouraging news. So happy to see it's a "race" to find now. (US of course never UK - home to biggest con artists). And quite agree Wayne - especially liking the "find" of aberrant proteins in the spinal fluid.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
This is a helpful article, although I think the first sentence might be a little over-optimistic and hopeful!:

As scientists race to find a biological cause for chronic fatigue syndrome...

This bit is interesting... Testing for all known 'agents' that affect all vertebrates. I wonder if it's been done before? It could throw up some interesting and unexpected results:

And in a program at New York's Columbia University, researchers are seeking to identify pathogens that may appear prominently in patients with the disorder. Researchers will be testing "for all those agents that we know affect vertebrates on this globe," says Mady Hornig, who heads the Columbia program.

As far as I know, Komaroff and Huber have not actually ever detected XMRV or PMRV's, and so I think this study will be a waste of time, judging by the difficulty of detecting the viruses, and how many researchers have actually detected XMRV/PMRVs so far. (It's interesting that Huber is involved because she couldn't detect XMRV when she tried to, and decided that her positive readings were due to contamination.) I think Amy is referring to the Alter/Lo study, because some of their samples were from Komaroff's patients:

Anthony Komaroff, a doctor at Harvard Medical School who treats chronic fatigue syndrome patients, was involved in a study that found viruses in the same family as XMRV in his patients.

It's good to see that gene expression research is getting results:

At the University of Utah, researchers are working on what they hope might ultimately lead to a test for chronic fatigue syndrome. Forty-eight patients with the disorder and healthy controls are involved in a trial in which they undergo a 30-minute exercise challenge. Even after moderate exercise, there were increases in gene expression markers in the blood for two days that allowed researchers to distinguish chronic fatigue syndrome patients from healthy controls.

Whatever happens with XMRV research now, I do tend to agree with this statement:

"The door has been opened by the retrovirus," says Mary Schweitzer...
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
The CAA sent out this message in their email newsletter:

The Wall Street Journal continues its prominent placement of news about CFS. Today's print issue features an article, "More Clues in Mystery of Fatigue Syndrome," by Pulitzer-Prize winning journalist Amy Dockser-Marcus. The article begins on the front page of the Personal Journal section of the paper and continues on page D4 where it fills half the page. The online version of today's WSJ article (titled, "Unlocking Chronic Fatigue Syndrome") includes an essay by Molly J. Billings about her life with CFS; a timeline of Molly's path to diagnosis; a video of Dr. David Bell and long-time patients; and a timeline of XMRV.

Katherine Hobson writes about the upcoming NIH ME/CFS State of the Knowledge Workshop in today's WSJ Health Blog, drawing attention to Dockser Marcus's article about CFS research in "The Hunt for Biological Causes of CFS."

So there's a second (short) article about CFS in the Health Blog of the WSJ today, here:
The Hunt for the Biological Causes of Chronic Fatigue Syndrome.
http://blogs.wsj.com/health/2011/03...iological-causes-of-chronic-fatigue-syndrome/

And there's an online essay by Molly J. Billings about her life with CFS, here:
Molly J. Billings about her life with CFS.
http://online.wsj.com/article/SB100...%7Cfile%3Dmollyscfsstory&articleTabs=document
 

Jemal

Senior Member
Messages
1,031
If you look at it positively, you could say: "Amy is great, she is trying to understand our disease and she will keep covering the story."
If you look at it negatively, you could say: "Amy is losing faith in the XMRV connection and she's covering more aspects of the disease, so that if the XMRV link gets disproven, it's not only XMRV articles she has to her name."

Whatever I think, I am very glad with this article and her continued investigations.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
If you look at it positively, you could say: "Amy is great, she is trying to understand our disease and she will keep covering the story."
If you look at it negatively, you could say: "Amy is losing faith in the XMRV connection and she's covering more aspects of the disease, so that if the XMRV link gets disproven, it's not only XMRV articles she has to her name."

Whatever I think, I am very glad with this article and her continued investigations.

Or the way I was looking at it was...
Amy is aware that there is a possibility that XMRV might not lead anywhere for ME...
But while she was covering XMRV, she learnt so much about this neglected illness, and its history, and what the patients have to endure, and she didn't want to stop covering the subject even if it turns out that XMRV leads nowhere...
So she's going to stay with us, whatever happens.

I'm so grateful to her!
 

Jemal

Senior Member
Messages
1,031
Or the way I was looking at it was...
Amy is aware that there is a possibility that XMRV might not lead anywhere for ME...
But while she was covering XMRV, she learnt so much about this neglected illness, and its history, and what the patients have to endure, and she didn't want to stop covering the subject even if it turns out that XMRV leads nowhere...
So she's going to stay with us, whatever happens.

I'm so grateful to her!

I definitely hope it's something like this. I made a black & white statement, but there are many shades of grey.
Whatever it is, I am very glad she keeps writing these stories.
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
If you look at it negatively, you could say: "Amy is losing faith in the XMRV connection and she's covering more aspects of the disease, so that if the XMRV link gets disproven, it's not only XMRV articles she has to her name."

QUOTE]

I look at this as a positive also, it's good to have other things" in our arsenal, just in case XMRV is not the beal and end all of our story!

GG
 

urbantravels

disjecta membra
Messages
1,333
Location
Los Angeles, CA
If you look at it positively, you could say: "Amy is great, she is trying to understand our disease and she will keep covering the story."
If you look at it negatively, you could say: "Amy is losing faith in the XMRV connection and she's covering more aspects of the disease, so that if the XMRV link gets disproven, it's not only XMRV articles she has to her name."

Whatever I think, I am very glad with this article and her continued investigations.

Whatever the reasons she has for broadening her focus, it can only be beneficial to us. If XMRV washes out, there will still be awareness of the other promising lines of research. If XMRV doesn't wash out, well, we still need the other lines of research to increase our understanding of the disease, not to mention the fact that some of the other research might bring us more benefits more quickly than XMRV. If XMRV is a go, it'll take quite a long time for treatment regimens to get tested adequately, verified, and approved.

And the thing we *really* fear - that if XMRV washes out we get tossed back in the "psychosomatic" wastebasket - is less likely to happen the more aggressively the other lines of research are pursued, and their findings widely publicized. I would like, I would really really like, to think that the re-wastebasketing can't happen at this point, when the information is so widely out there about the other physical abormalities being found in this disease.

It's my feeling that Amy's editors are giving her such free rein with this story because they are hoping to put her up for a Pulitzer. She already has one, after all. I do not doubt that she is a compassionate person who cares about the suffering of PWCs, (and her previous Pulitzer was for coverage of cancer issues, including its impact on patients, so she certainly has a feel for this type of subject), but I don't think the WSJ is giving so many column-inches to her coverage of ME/CFS out of kindness. Publishing such big stories is a business decision, and I don't think it's 100% motivated by the business implications of new ME/CFS tests and treatments coming on line, although that's certainly a part of it.