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.
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.
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The link to Hard Cell doesn't work, unfortunately: 404 error.
ReplyDeleteBravo, Mindy! The truth will set us free someday! I may not live to see it, but I'm dreaming about it!
ReplyDeleteThank you, Mindy, for reminding Nigel Hawkes of the truth about Ean Proctor. It is about time Simon Wessely's misdeeds are acknowledged.
ReplyDeletePatricia Carter
Hi Mindy. So glad you wrote him. So did I. (below)
ReplyDeleteMr Hawkes--
Regarding journalism, Bill Moyers sums it up brilliantly: "What is important for the journalist is not how close you are to power, but how close you are to reality." (4/7/08, Huffington Post) Regarding your recent article Dangers of research into chronic fatigue syndrome, it is all too clear just how badly reality lost out.
What stands out most in your article, besides its obvious lack of impartiality, fairness, and objectivity, is its rather horrifying lack of sensitivity and compassion towards those who are suffering with the serious debilitating neuro immune disease known as ME/CFS, an illness affecting close to 20 million people worldwide, and including men, women and children. If you would have been willing to thoroughly investigate the truth about the suffering brought on by this hideous devastating disease, you could have actually gleaned some insight into why ME/CFS patients are outraged and disgusted with those like Wessely, who are the real "danger" in this equation, and who have deluded themselves (and convinced you) into believing they are the victims.
Please read this article, Hard Cell (about Simon Wessely's "treatment" of Ean Proctor) and watch the videos I have sent you. Perhaps they will give you a reality check.
Thank you.
Science Reporter Sees Friend and Other ME Patients Die
Thanks Mindy,
ReplyDeleteSo just what was the purpose of the BMJ publishing the "article" by Hawkes?
Is there any way to interpret this article as an attempt at creating a constructive dialog or fostering a greater understanding of differences in perspective?
Was it a threat?
Was it intended to scare off other researchers from the CFS field? If so, was that because the CBT/GET contingent if afraid of more rigorous scrutiny? Or was that an attempt to teach CFS patinets a lesson?
Was this rant better suited for a doctors lounge bitch session about those lousy CFS patients?
Was it an attempt to smear everyone in the CFS community because we didn't appreciate the $7-8 million dollars they spent on the PACE trial?
I've been scratching my head wondering what the editors of the BMJ were thinking.
FWIW, I've been quite pleased by a majority of the patient responses posted to this article. The patients come off looking a lot more reasonable than the authors or the journal: http://www.bmj.com/content/342/bmj.d3780.extract/reply#bmj_el_262644
Cheers for trying to set the record straight Mindy.
ReplyDeletefly
mindy and commentor shane - both of you have provided wonderful docs of the facts surrounding britain and america's current war on the patient communities for not sitting down, shuttting up, and taking our meds on time. thank both of you so much - i see a new infectious disease dr tomorrow and i feel armed. thanks again and well done both of you.
ReplyDeleteThank you Mindy for this wonderful response. It is an outrage these meanspirited, unscientific and counterfactual articles were published (the patient-authored article was superb). Rereading "Hard Cell" and Wessely's documents I was once again appalled, especially about how Wessely doesn't mention any regret for Ean's abuse, but instead says he's "appalled" that Ean's story has become part of the public ME debate. That Ean is the 'victim' of his parents' making public his story! That he does not have ME now, but may have had once and then gotten this psychological problem- a "common sequence of events." Wessely, as we all know, is very sick.
ReplyDeleteThank you also to Dreambirdie and Shane Carlson for your excellent comments.
Brilliant letter, Mindy. Doesn't look like this guy has the courage to respond.
ReplyDeleteAnd 25 Years Later, The Band Marches on in the same direction. My son was not thrown into a pool; he was just interviewed by intense detectives for 5 long years weekly with the intent of removing him from his familial home for having CFS/ME and not being able to attend school. Intimidated, Scared, Sick and visibly shaken; a 14 year old boy was terrorized by societies reaction to a star athlete who became chronically ill without a known diagnosis. We live in a wonderful farm home. Clean, gorgeous views, fantastic farm life....what next Mindy? Where do we go from here? How do you tell a young man riddled with a mysterious debilitating disease that you, his own mother, may not be able to protect him from United States Law? This has got to Stop. Now. The TIME for Political Action IS NOW.
ReplyDeleteThank you Mindy, for writing this great letter to try to get the truth out there!!
ReplyDeleteTHANK YOU THANK YOU THANK YOU. Too tired to say anything else!
ReplyDeleteThat BMJ article was way over the top. Shameless, and full of misinformation and propoganda. It will reinforce the misinformation and negative stereotypes of ME/CFS patients that already exist in the minds of many, if not most, BMJ readers.
ReplyDeleteUnfortunately, setting the record straight here doesn't reach the same audience. I'm afraid that even letters to the BMJ won't undo the damage that article has done. Lies that tell people what they want to believe are often more powerful than the truth. Nevertheless, it's still important to keep repeating the truth and refuting the lies, and I thank you for doing that.