Contamination?

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.

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. 

NOV 29 PROTEST AT BARTS

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 25^th 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:
http://www.notsonice4me.co.uk/BARTS_PROTEST.htm

For information on how to email or fax a virtual protest:
http://www.notsonice4me.co.uk/BARTS_PARTY___SEND_A_CARD.htm

A Facebook page devoted to the protest:
http://www.facebook.com/?sk=events#!/event.php?eid=156600244382628

2011 Open-Label Ampligen Trial

Patients interested in participating in an open-label trial for the experimental ME/CFS drug Ampligen should contact Ali Allen or Kristin Pierce at Dr. Lucinda Bateman's office in Salt Lake City, Utah, for more information.  Depending in part upon patient response, Bateman may elect to conduct a trial in 2011. With an open-label trial, all patients receive the investigative drug.

The drug cost will be approximately $6,700 for the first six months, which will include extensive testing to determine eligibility, and $7,200 for each additional six-month period.  In addition, there will be procedure expenses (infusion costs, bloodwork, X rays, EKGs and other testing) of approximately $6,900 every six months, plus administrative costs of approximately $1,500 every six months.  For six months, expect to shell out more than $15,000 to participate in the study, plus housing costs if you're not from the area.

To qualify for the study, patients must be able to visit the clinic up to six times during the first 10 weeks for baseline testing before receiving the intravenous drug Ampligen.  Once you begin the drug, you must reside in the Salt Lake City area and visit the clinic at least twice each week, for one- to two-hour visits, for at least six months.  

Ali Allen: ali@fcclinic.com

Kristin Pierce: kristinp@fcclinic.com

1-801-532-8311