DOCTOR, DOCTOR, GIVE ME THE NEWS

The International ME Association (IMEA) and patient advocate and IMEA member Keith Baker have nominated Dr. Joan Grobstein, a neonatologist with ME, to sit on the Chronic Fatigue Syndrome Advisory Committee (CFSAC).  A graduate of Harvard College and University of California at Davis Medical School, Grobstein was serving as a neonatologist at Children’s Hospital of Philadelphia and the University of Pennsylvania when she became ill with ME more than a decade ago.  She has testified before the CFSAC committee several times, most recently last spring (see clip at the bottom of this post).

Baker says that Grobstein’s experience both as a patient and a medical doctor is a good blend of attributes that no one else on the committee has.  “And that’s a perspective that the committee needs,” he says.

Grobstein says she decided she wanted to join CFSAC because the current government response has been “inadequate. Access to care is extremely limited, and there is little funding for research into the causes and potential therapies for the disease,” Grobstein explains. “Patients have waited far too long for progress.”

The deadline for CFSAC nominations is August 17^th. A former high-ranking government worker told CFS Central last spring that in his experience what gets the government’s attention is Facebook. In his view, the government has learned to ignore phone calls, faxes and emails. But Facebook campaigns, he said, “panic” them because they’re viral, embarrassing, and leave an indelible footprint.  Ideally, a campaign endorsing Grobstein’s bid could be started today.

BREAKING THE CODES

 Blood Working Group 

Results Expected in a Month

Dr. Michael P. Busch, director of the Blood Systems Research Institute, said today in a telephone interview with CFS Central that his institute began this week to break the codes for the Phase III study of the XMRV Blood Working Group.  “We expect in the next month to preliminarily disseminate the findings,” Busch said.  The Phase III study is evaluating the specificity and sensitivity of different assays in detecting the retrovirus XMRV, first discovered in ME/CFS patients in October 2009 by the Whittemore Peterson Institute.

How the Blood Working Group plans to publicize the results will be determined later this month, when the Blood Working Group scientists have their next phone conference.  Busch offered three possible ways of publicizing the preliminary findings:  in a peer-reviewed journal; at a conference; or in a press release.

“The Working Group will have to decide whether we put out a general public announcement summarizing the findings [making sure] that it would not undermine the scientific, peer-reviewed publication. Major journals are careful about embargoing findings. We’re working on a paper, pending the findings, so that we can plug them in and submit the paper.”

However, “definitive” dissemination will be through publication in a major journal, Bush clarified.

Researchers have examined whole blood, PBMC’s (peripheral blood mononuclear cells, which are cells with a nucleus, key players in the immune response), and serology (antibody testing).  Several labs participated, including those at the Whittemore Peterson Institute, the Food and Drug Administration, National Cancer Institute, and Centers for Disease Control, plus the commercial labs Abbott and Gen-Probe. 

The scientists examined the blood of ME/CFS patients who were positive in the Lombardi and Lo papers, as well as pedigreed negative control donor samples and spiked positives.  Several samples from about 70 different subjects were tested using at least 15 different assays.

“Our Phase IV and other planned studies of donor and recipient infection are contingent on results from Phase III documenting reproducible and specific detection of virus/antibody,” Busch said.

YOU DON'T DESERVE A BREAK TODAY

 

The bigger the lie, the more it will be believed

On the heels of the extraordinary documentary about cancer doctor Dr. Stanislow Burzynski, who’s been fighting the U.S. government  in court for 20 years to treat his patients with an effective cancer therapy, comes another equally powerful HBO documentary called Hot Coffee.  Documentary filmmaker Susan Saladoff paints a grim picture of the U.S. government, corporate America and the press stifling citizens from seeking justice through the courts. 

In the film, oilfield mega-corporation Halliburton prevents a woman from taking her abusers to court, even though she’s been brutally gang-raped and disfigured by Halliburton employees.  In another segment, malpractice caps--so called tort reform--prevent parents from collecting what the jury has awarded them to care for their son, born severely retarded and physically handicapped due to physician error.  And political mastermind Karl Rove, adviser to President George W. Bush, buys big-business judges and destroys judges intent on safeguarding the rights of ordinary citizens.

Bush himself makes a few appearances in the film, putting his foot in his mouth repeatedly. “In my line of work you have to keep repeating things over and over and over again for the truth to sink in, to kinda catapult the propaganda,” he explains.

The title Hot Coffee refers to a McDonald’s case brought by a 79-year-old woman, Stella Liebeck, who was burned by the restaurant’s coffee.  Excoriated by the media and big business as a money-hungry opportunist in search of "jackpot justice," she was, in reality, a hardworking recent retiree who sustained massive third-degree burns that required extensive skin grafts and surgeries.  All she wanted from McDonald’s was for the company to pay for what Medicare didn’t cover.  When McDonald’s refused, they went to court. 

McDonald’s had incurred more than 700 complaints and injuries that its scalding coffee—held at 180 degrees—was too hot, but never did anything about it until Liebeck sued and won.  Still, she remained the butt of jokes.  And given the severity of her injuries, it's not surprising that she never fully regained her strength and has since died.

At least the coffee’s 10 degrees cooler.

What does all this have to do with ME/CFS?  Nothing and everything.  It's the same story of desperate and deserving people being marginalized and abused by the government, big business and the press.  Different insults; same result.

Take a look at the trailer:

J'accuse!

Last week, freelance writer Nigel Hawkes penned a piece for the British Medical Journal called "Dangers of research into chronic fatigue syndrome." In the article, Hawkes argues that "threats to researchers" from the ME/CFS community are "stifling" the science.  In particular, he mocks patients who've accused British psychiatrist Simon Wessely of throwing a young boy into a swimming pool to check if his paralysis was genuine.  

I wrote a letter to Hawkes to set the record straight, as I interviewed the parents of that boy last summer for one of the first articles I wrote for this blog, "Hard Cell."  I waited a few days for a response from Hawkes, but he's not replied, so it's time to post the letter:  

 
Dear Mr. Hawkes,

I’m an investigative reporter in the States. Last summer, I interviewed the parents of Ean Proctor for an article I was writing. Nearly 25 years ago, when he was 12, Ean, who was wheelchair-bound with a severe case of ME, was put facedown in a swimming pool without water wings.  He sank underwater and had to be rescued.  He endured other Dickensian tactics while he was sectioned.  For instance, the doctors and nurses, according to Mrs. Proctor, believed Ean was faking his illness and forced him to feed himself, which took hours because his arms were so weak.  He sat in soiled clothing because the nurses wouldn’t take him to the bathroom.

Although Dr. Simon Wessely didn’t personally do any of this to Ean, he did sign papers that led to Ean being separated from his parents where he was abused—there is no other word for it than abuse—for five months before his parents finally succeeded in getting him out.

I wrote a piece on his ordeal called “Hard Cell” for my blog, CFS Central.  In it, I referenced the documents Wessely wrote about Ean back then.  You can read three of them in full.  In addition, I interviewed Dr. Wessely, who did not deny the incident.  Moreover, there is a link to a youtube video where Ean is interviewed about his sectioning.

I’ve interviewed many other ME patients who’ve been subjected to similar abuses at the hands of British doctors and live in fear that they’ll be sectioned again. After 30 years of abuse at the hands of many in the British health system, patients have rightfully had enough. I believe that you’ll better understand what patients are really dealing with from Dr. Wessely and others like him if you get all the facts.

I welcome a dialog with you toward more accurate reporting on this issue.