Thursday, June 24, 2010


Directed by British filmmaker Geoffrey Smith for release in 2011, the documentary What About ME? chronicles the plight of ME/CFS patients in Great Britain and the United States.

The trailers (one for the U.K, one for the U.S.) feature interviews with ME/CFS physicians Sarah Myhill in the U.K. and Daniel Peterson in the U.S.; advocates, including biochemist Malcolm Hooper and Whittemore Peterson Institute president Annette Whittemore, who funded the first XMRV study in patients with Chronic Fatigue Syndrome; and patients, among them Whittemore’s daughter, Andrea Whittemore Goad, who talks about the worst aspect of the disease for many patients:  not being believed.

The production values in What About ME? are lush; this is a first-rate operation.  And the trailers convey an eerie, disquieting mood, underlined by the plaintive musical score.  They’re reminiscent of such memorable documentaries as Under Our Skin, Andy Abrahams Wilson’s film about the Lyme disease epidemic; and The Thin Blue Line, Errol Morris’s explosive movie about a man unjustly found guilty of murder.

One exquisitely painful sequence in the U.S. trailer of What About Me? has you gazing at photos of ME/CFS sufferers before they became ill alongside photos of them afterward.  It’s like the before-and-after pics of a beauty makeover—except reversed.  Beneath the placidity of the day-to-day lives of ME/CFS patients—many of whom are bed-bound or house-bound with no good treatments and little hope of getting well—brews the perfect storm. 

The saga makes for great drama even as it’s shattering lives.  On one side are more than a million sick patients in Great Britain and the United States, with few beleaguered physicians willing to treat them and, up until the XMRV study, poorly funded researchers looking into a viral etiology.  On the other is an army of well-funded psychological researchers in government agencies and at universities churning out studies on depression and early childhood trauma in ME/CFS. 

The trailers aren’t all sturm und drang, however.  There are laugh-out-loud moments. One British mother of a daughter sick with ME/CFS explains how she was told by various doctors that the disease doesn’t exist in children but that in any event her daughter would recover within two years.  “That’s quite a common thing they tell parents,” she says matter-of-factly.   “Which is an interesting one because if you don’t believe in something anyway, why do you believe there’s a time limit on it?”

Given that the filmmakers fall squarely on the side of the patients, it’s not surprising that none of the psychological or psychobiosocial proponents—some of whom have been outspoken critics of the Whittemore Peterson Institute XMRV study and have come out with studies refuting its findings—have to date agreed to be interviewed.  As a friend of mine always says:  The more open the marriage, the more private the divorce.

Geoffrey Smith, the film’s director, is best known for his award-winning documentary The English Surgeon, which New York Times critic Manohla Dargis cited as one of her favorite films of 2009.  Smith trailed prominent London neurosurgeon Henry Marsh on his latest mission to bring state-of-the-art surgery to the primitive medical conditions in Ukraine.

Shepherding What About ME? is Susan Douglas, who produced the 2009 documentary Who Killed Nancy? directed by British filmmaker and author Alan G. Parker.  Stabbed to death in the fall of 1978, Nancy Spungen was the girlfriend of Sex Pistols bassist Sid Vicious.  Widely believed—perhaps erroneously—to have been responsible for her murder, Vicious died of a heroin overdose four months after Spungen’s death.

In an email, Douglas said she conceived What About ME? two years ago, after an illuminating conversation with the mother of a young man with ME/CFS, which his mother believes he contracted after crop spraying near his home.  “That got my attention,” Douglas wrote.  “I have since realized what a massive, multi-layered subject it is.”

At present, filming is planned only in the U.K. and U.S. but, Douglas said, “As you know, the nature of the beast can change according to breaking stories, so if there is anything elsewhere and the budget allows we could possibly shoot outside of this premise.”

Douglas’s production company is Double D—and no, it has nothing to do with bra size.  It stands for Digital Documentaries, as the company specializes in online distribution.  “The name,” Douglas concedes, “makes it more memorable.”  Douglas is aiming for a multi-platform release—theatrical, online and television.  “We really intend to get this to the planet, not just the ME community.”


  1. What a great article! I appreciate your work, Ms. Kitei. I hope everyone will see this documentary.

    Patricia Carter

  2. I had a conversation with a psychologist about ME/CFIDS and how our government agencies in the US have tried to turn it into a mental illness. I am very much looking forward to this movie. Thank you.

  3. If the movie is anything like the trailers, it will be amazing.

  4. what i find interesting is that crop spraying is responsible for nerve damage in honeybees as well. hmmmmm....maybe we should stop spraying all those pesticides.

  5. Thank you to all who are working hard with the film. I cant wait to see the film wne its finished.

    My ME trigger was a vaccine, and have been very ill ever since.

    I love the trailers. I also cant wait to send my GP a DVD of the film.

  6. Myself and my partner wanted to make a docu on this subject, but looking at this I think you have made a great job and I will be looking forwad to seeing it.


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