Thursday, December 23, 2010

Dr. Coffin Responds

While waiting for sources to get back to me, I thought I’d post preliminary comments from Tufts University’s Dr. John Coffin.  Coffin co-authored two of the four studies in Retrovirology on Monday that postulated that XMRV may be merely contamination from mouse DNA, as opposed to a new human retrovirus that has jumped species from mouse to man and has been found in patients with ME/CFS and prostate cancer.

CFS Central:  In your papers, you write that you obtained samples of WPI's [Whittemore Peterson Institute] XMRV positive lymphoblastoid cells.  Your papers, however, don't discuss testing these cells for evidence of mouse DNA….  Did you test these cells for evidence of mouse DNA?  If so, did you find contamination? If you did not test the 1282 cells for contamination, why did you decide not to test them?

JOHN COFFIN:  Not to my knowledge, since there was no particular reason to do so.  We have tested [prostate cancer] 22Rv1 cells, and some other human cell lines, with negative results.

CFS Central:  Were the cell lines you tested that had no mouse contamination (the 22Rv1 cells, for instance) XMRV positive or XMRV negative?

JOHN COFFIN:  22Rv1 is XMRV positive. It's the standard positive control.

CFS Central:  Have you tested or do you have plans to test XMRV positive patient samples from WPI or MLV [-related virus] positive patient samples from Drs. Alter and Lo?  

JOHN COFFIN:  We have no plans to do so at Tufts. However, the group I work with in the NCI [National Cancer Institute] is collaborating with the Blood Working Group, and we will look at samples from both the WPI patients as well as the same patients that Lo and Alter studied. [Lo and Alter are the principal investigators of the NIH/FDA/Harvard study published in August, which found XMRV-related retroviruses in the majority of ME/CFS patients and 7 percent of controls.]

CFS CENTRAL:  If you’ve already tested these retroviral positive samples from WPI and Alter/Lo, did you find mouse DNA contamination?  

JOHN COFFIN:  We haven't done that yet.

CFS CENTRAL:  If Tufts hasn’t tested these samples and has no plans to, wouldn’t that be the definitive way to determine whether there is mouse DNA contamination?

JOHN COFFIN:  We will test at NCI using the same assay.

Wednesday, December 22, 2010


I’m working on a piece about Monday’s Retrovirology papers that postulated that XMRV was merely lab contamination from mouse DNA rather than an authentic, new human retrovirus.  Please bear with me.

Wednesday, December 1, 2010

Disability Claims

 Linda Nee heads up Disability Claims Solutions, which helps ME/CFS patients in the U.S. and the U.K. apply—and if need be fight—for long-term disability.  

“Many insurance companies have the philosophy that they predetermine the outcome of ME/CFS claims—and that outcome is to deny the claims,” Nee says matter-of-factly.  Should the insurance company pay the claim, she says, there’s an enormous financial advantage to categorize ME/CFS as a psychological problem.  Group policies in Europe and the U.S. often cover psychiatric disorders for only two years, whereas coverage for a physiological disease usually continues until age 65. 

“You do the math,” Nee says. 

Friday, November 26, 2010


From noon to 3 p.m. on Monday, ME/CFS patients in the U.K. are staging a virtual and onsite protest to mark the 25th anniversary of London’s St. Bartholomew’s Hospital ME/CFS service.  The hospital itself, however, is 900 years old, having been founded in 1123 by a courtier in King Henry I’s court.  The hospital’s future seemed precarious 400 years later, when King Henry VIII—the king who beheaded or divorced four of his six wives—ordered the dissolution of the monasteries, thereby depriving the hospital of income, until King Henry VIII reendowed Barts shortly before his death, in 1546.

Many ME/CFS patients believe that the treatment they’ve received at Barts is more appropriate for medieval times than today.

Rosie O’Grady (not her real name) is one of them. The 43-year-old disabled lawyer hails from Ireland but lives in England with a severe case of ME/CFS. Before she became ill in 1996, she reminisces, “I rowed on the weekends on the Thames with a rowing club in Greenwich. I loved traveling and my friends. My life was very full.” 

All that changed 14 years ago when she became ill with a flu from which she has yet to recover.  She was an outpatient at Barts several times from 1997 to 2005. To get government benefits in the U.K., she explains, there’s “intense pressure to show you’re doing ‘treatment.’  If you had a private income, you would not go there.”

O’Grady says the doctors and rehab team at Barts wanted her to become as physically active as possible. “I was told by the physio there everyone could do 10 percent more activity every few weeks. They told me that any time I felt unwell [I should] go for a walk and the fresh air would wake me up.  I completely placed my trust in them,” she says, but like most patients with ME/CFS pushing herself only made her worse. “Some days my power to my fingers was so weak I could not pick up a coin,” she remembers. “I was desperate to get well and would have done anything they said.”
Her ME/CFS case was so severe that she moved into a YMCA where all food and services were provided.  “I could not even change the duvet on my bed,” she says.  “I was unable to make a cup of tea and stay awake to drink it.”  Today she is bedbound or in a wheelchair, unable to work or remain upright for more than few minutes at a time.  She believes that her time at Barts contributed to her ill health.  Her sojourns there left her physically weaker and “emotionally spun out from the lies and double speak.”

Frustrated by the care at Barts, O’Grady made an appointment with a rheumatologist at a different hospital, who prescribed anti-inflammatories to treat the pain in her back and neck, which proved helpful.  When she had given her Barts doctor the same list of rheumatologic symptoms, “he looked bored, said nothing and started cleaning his fingernails,” she recalls.  “Another doctor claimed they didn’t need to run many tests on ME/CFS patients because “they would know the results simply by looking at the patients.”
For more information on the protest:
For information on how to email or fax a virtual protest: