Updates on the PatientsLikeMe Study and an Intriguing Connection to Simon Wessely
The social networking health site PatientsLikeMe recently commissioned a study by New Zealand psychologist Keith J. Petrie on "illness perceptions and their impact on health outcomes" in fibromyalgia and ME/CFS. Stated simply, this means that one’s “perceptions” cause the illness.
PatientsLikeMe was named one of “15 companies that will change the world” by CNN Reports. Certainly an organization as vital and life-changing as PatientsLikeMe should be aware what “illness perceptions” means when it comes to ME/CFS.
1,100 patients participating
Eleven hundred patients are participating in this PatientsLikeMe study by New Zealand scientist Dr. Keith Petrie. Petrie believes ME/CFS is psychological and has done several studies with Dr. Simon Wessely. The study was closed on February 6.
However, patients can withdraw from the study at any time, which is one reason I’m posting about this study now. If you believe that Petrie's study is problematic, consider withdrawing from the study and sharing your concerns with patients on the PatientsLikeMe site, who may then elect to withdraw from participation in that study.
If enough patients withdraw, the study will die. More importantly, I believe it’s important to explain to PatientsLikeMe what's wrong with the study, and thereby change the mindset and the direction of research.
Already, several patients have posted or written to me that they have withdrawn from the study, much to the consternation of Dr. Michael Massagli, who's overseeing the study at PatientsLikeMe. One patient, Omerbasket, received this letter back from Massagli when he asked to withdraw:
Hello Omer.
I've received your request and will do as you ask.
But there is no reason for us to cease the study. As I've described the purposes of the study in the survey invitation and in the Forum http://www.patientslikeme.com/forum/show/90352, I'm not going to repeat myself here.
Thank you for your participation in PatientsLikeMe, limited as it has been.
Michael Massagli
I've received your request and will do as you ask.
But there is no reason for us to cease the study. As I've described the purposes of the study in the survey invitation and in the Forum http://www.patientslikeme.com/forum/show/90352, I'm not going to repeat myself here.
Thank you for your participation in PatientsLikeMe, limited as it has been.
Michael Massagli
CFS Central sent a letter on February 7 to Massagli and to Jamie Heywood, co-founder of PatientsLikeMe, explaining why the study is problematic. (Heywood started the company when his younger brother Stephen was stricken with ALS.)
I have yet to hear back.
I have yet to hear back.
Simon Wessely connection
Since then, a patient who calls himself Doogle on the boards sent CFS Central an intriguing series of connections, starting with the fact that a scientist named Dr. Paul Wicks is director of research and development at PatientsLikeMe.
Since then, a patient who calls himself Doogle on the boards sent CFS Central an intriguing series of connections, starting with the fact that a scientist named Dr. Paul Wicks is director of research and development at PatientsLikeMe.
Why is this important? Wicks received his doctorate from the Institute of Psychiatry, King's College London, where Dr. Simon Wessely serves as vice dean for the department of psychiatry.
At King’s College, Wicks’s supervisors were Dr. Laura Goldstein and Dr. Sharon Abrahams. Dr. Laura Goldstein helped draft Matthew Broome’s journal article "A neuroscience of hysteria," which categorizes chronic fatigue syndrome as a “somatoform condition.” Somatoform is code for mental disorder.
In addition, Laura Goldstein serves on the executive committee of the British Neuropsychiatry Association with Anthony David, a staunch CBT/GET advocate for ME/CFS.
To be fair to PatientsLikeMe's Paul Wicks, he’s intrigued with the emotional overlay in other diseases. In fact, according to his profile, his main thrusts are the emotional and cognitive effects caused by ALS and Parkinson’s disease.
To be fair to PatientsLikeMe's Paul Wicks, he’s intrigued with the emotional overlay in other diseases. In fact, according to his profile, his main thrusts are the emotional and cognitive effects caused by ALS and Parkinson’s disease.
Neuoimaging studies not psychological studies
In addition, Wicks has collaborated with Dr. Martin Turner on a neuroimaging project using PET scans of the brain. However, at PatientsLikeMe, it doesn’t appear likely that he'll be involved in ME/CFS neuroimaging. But perhaps the readers of this blog can change that.
In addition, Wicks has collaborated with Dr. Martin Turner on a neuroimaging project using PET scans of the brain. However, at PatientsLikeMe, it doesn’t appear likely that he'll be involved in ME/CFS neuroimaging. But perhaps the readers of this blog can change that.
If you believe this PatientsLikeMe study on how “illness perceptions” impact health should be stopped, consider withdrawing from the study and explaining on the PatientsLikeMe boards what's problematic with it, thereby encouraging other patients to withdraw. Tell PatientsLikeMe what biomedical studies you do want.
Wouldn’t it be outstanding, and a far better use of money, if PatientsLikeMe would do a neuroimaging study on ME/CFS instead? Wouldn't this be a better use of Paul Wicks's time and expertise?
Sample letter
Below are excerpts from the letter I sent to Heywood and Massagli:
Feb 7
Dear Mr. Heywood and Dr. Massagli,
As a science reporter, health-book author, and blogger to 100,000 Chronic Fatigue Syndrome patients, I'm discouraged by your recent questionnaire devised by Professor Keith J. Petrie on PatientsLikeMe. His field of expertise is "understanding illness perceptions and their impact on health outcomes," and the questionnaire is for patients with fibromyalgia or Chronic Fatigue Syndrome. "Illness perceptions" is a well-known phrase to the CFS community. What it means is that your perceptions cause your disease.
I've been reporting on CFS for 20 years and have lost one of my best friends to the illness. Four patients whom I interviewed back in 1994 for a story on the experimental HIV and CFS drug Ampligen called "The AIDS Drug No One Can Have," for Philadelphia magazine, have died from the disease, one in her 40s, another in his 50s. Their "perceptions" did not cause their deaths.
Despite its benign name, CFS is anything but, and it's certainly not the psychogenic disorder that this questionnaire and Petrie's other studies indicate. For many, CFS is a living death and causes seizures, heart failure, rare cancers, and immune and autonomic dysfunction. For many, CFS is comparable to end-stage AIDS and heart disease in its severity. Due to its pathetic name, coined by the CDC to ward off disability claims, the disease has been hijacked by psychologists, including Petrie. Doing this study is yet another slap in the face for CFS patients desperate for biomedical research.
In 2009, a retrovirus called XMRV, similar to the retrovirus that causes HIV, was found in the majority of CFS patients tested. That finding was repeated by the NIH this past summer. This is not a psychological disorder, and it is way past time to stop treating it as such. Patients with CFS need biomedical research in the same way that patients with ALS and HIV do.
Although I'm sure that you mean well, you're only causing damage and doing patients a great disservice with this study. Please stop Petrie's study, and stop being a party to such studies in the future.
If I can help in any way where CFS is concerned, please let me know. I would be happy to direct you to researchers who really understand what CFS is and who would draw many more CFS patients to your site.
You may not know that many of the patients Petrie studies don't have CFS; they have idiopathic fatigue or chronic fatigue--entirely different entities. In addition, Petrie dubs those with CFS "castrophizers." Is that what you call individuals who are desperately sick, many for decades, with no drugs, little support from doctors or the community because of the stigma caused by the disease's trivial name? I call these patients courageous. I call them survivors.
Sincerely,
Mindy Kitei
CFS Central
http://www.cfscentral.com
Sample letter
Below are excerpts from the letter I sent to Heywood and Massagli:
Feb 7
Dear Mr. Heywood and Dr. Massagli,
As a science reporter, health-book author, and blogger to 100,000 Chronic Fatigue Syndrome patients, I'm discouraged by your recent questionnaire devised by Professor Keith J. Petrie on PatientsLikeMe. His field of expertise is "understanding illness perceptions and their impact on health outcomes," and the questionnaire is for patients with fibromyalgia or Chronic Fatigue Syndrome. "Illness perceptions" is a well-known phrase to the CFS community. What it means is that your perceptions cause your disease.
I've been reporting on CFS for 20 years and have lost one of my best friends to the illness. Four patients whom I interviewed back in 1994 for a story on the experimental HIV and CFS drug Ampligen called "The AIDS Drug No One Can Have," for Philadelphia magazine, have died from the disease, one in her 40s, another in his 50s. Their "perceptions" did not cause their deaths.
Despite its benign name, CFS is anything but, and it's certainly not the psychogenic disorder that this questionnaire and Petrie's other studies indicate. For many, CFS is a living death and causes seizures, heart failure, rare cancers, and immune and autonomic dysfunction. For many, CFS is comparable to end-stage AIDS and heart disease in its severity. Due to its pathetic name, coined by the CDC to ward off disability claims, the disease has been hijacked by psychologists, including Petrie. Doing this study is yet another slap in the face for CFS patients desperate for biomedical research.
In 2009, a retrovirus called XMRV, similar to the retrovirus that causes HIV, was found in the majority of CFS patients tested. That finding was repeated by the NIH this past summer. This is not a psychological disorder, and it is way past time to stop treating it as such. Patients with CFS need biomedical research in the same way that patients with ALS and HIV do.
Although I'm sure that you mean well, you're only causing damage and doing patients a great disservice with this study. Please stop Petrie's study, and stop being a party to such studies in the future.
If I can help in any way where CFS is concerned, please let me know. I would be happy to direct you to researchers who really understand what CFS is and who would draw many more CFS patients to your site.
You may not know that many of the patients Petrie studies don't have CFS; they have idiopathic fatigue or chronic fatigue--entirely different entities. In addition, Petrie dubs those with CFS "castrophizers." Is that what you call individuals who are desperately sick, many for decades, with no drugs, little support from doctors or the community because of the stigma caused by the disease's trivial name? I call these patients courageous. I call them survivors.
Sincerely,
Mindy Kitei
CFS Central
http://www.cfscentral.com
Contact info:
Mr. Jamie Heywood: jheywood@als.net
Dr. Michael Massagli: mmassagli@patientslikeme.com
Dr. Keith Petrie: kj.petrie@auckland.ac.nz
Dr. Paul Wicks: pwicks@patientslikeme.com
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Thanks Mindy, much needed in a time of silly psychobabble.
ReplyDeleteEveryone please join the discussion with PLM Chair Jamie Heywood, Dr. Wicks and Dr. Massagli:
ReplyDeletepatientslikeme.com/forum/show/90352
Thank you, Mindy! This was a wonderful post, beautifully written!
Thanks, Mindy. I learned a lot from this post.
ReplyDeleteThanks again, Mindy, for posting the truth.
ReplyDeletePatricia Carter
Hi Mindy,
ReplyDeleteI hope you hear back from Mr. Heywood and Dr. Massagli. Maybe your blog will make them rethink their approach. I'll be watching for their replies here, and as always, thank you.
Thank you. I maintain a profile on the PatientsLikeMe site, but will most likely delete it now that I know of this connection. Of course, I shall inform them of the reasons and give them a chance to comment before I do so.
ReplyDeleteMindy, it sounds like the psychological camp promoting CBT and the concept of ME as 'illness perception' are based on Freud's psychodynamic theory. Freud suggested (over a hundred years ago) neurosis in individuals is a regressive state of conciousness...that neurotics lack sef-conciousness and need therapy to overcome their infantile preoccupation with earlier forms of thinking. Of course, he was author of the popular idea that perception defines thinking and in neurotics perception is false and requires psychotherapy to overcome. Freud details the concept in his book "Civilization and Its Discontents" and relates individual psychological processes onto the processes of civilization. According to Freud, Western culture is neurotic and in need of psychotherapy. (People promting CBT and ME as illness perception might want to think about the irony of that!!)
ReplyDeleteIt is important to make the disctinction in psychiatry biological approaches do not view mental disorders as perceptual, but rather as organically based disorders that require medical care. Increasingly, mental disorders are being understood to be related to immune and endoctrine dysfunction, which require multiple biological treatments in addition to/or in place of standard care with neuroleptics and supportive therapy. (Mind you, we have a way to go.) Things like CBT for mental disorders like schizophreina are merely used to cope with the fallout of the illness, and even this is controversial among naysayers. CBT is seen as simply resigning to chronic illness. In my view, good nutrion and treatment of immune abnormlaites can do far more than CBT. How can CBT help asthma or chronic allergies in schizophrenia, for example. Treat the immune related diseases and see what happens in terms of stress on the brain to improve neurological symptoms first!
It is strange seeing psychotheraputic concepts designed to change perception resurface in new form in the 21st in psychiatry. It is even stranger to see it applied to ME. Considering molecular technology has taught us that the immune and endocrine sysmtems play a huge role in all neurolgial based diseases, reserrecting psychotheraputic approaches as front line treatment is archiac. Let's move beyond Freud please. I think we have learned alot about the brain in the past century, and even Freud would agree it is time to move on. He supported the idea knowledge occurs in the context of history.
Perhaps the ME community should be specific and challenge the Freudian precepts forwarded by Wessley and others as front line therapies. It might be useful to outline that even for neuropsychiatric illness there are better options in terms of treating and preventing disease. At the very least, it might be beneficial to relate that merely coping with chronic illness is a pessimsitic post-modern theraputic concept that deserves to be buried, or relagated a vikign funeral. In the 21st century we have better more modern approaches to try as front line treatment for ME. CBT would be laughable as front line option for cancer, for example. Can you imagine psychotherapy as a first option making headway in the cancer community? Not a chance...I would have been dead a long time ago.
I completed a few answers on the questionnaire on PatientsLikeMe before I figured out that it was another psychobabble project and stopped. I forgot about it until I read your words, Mindy, and then I wrote to be sure they would not use my responses. Today I received this response, which included the following:
ReplyDelete"I've stated as clearly and concisely as I can what we're doing and why we're doing it. If people within or external to the PatientsLikeMe community want to impugn my motives or those of my colleagues, that is their right, but it doesn't mean they are correct.
Best wishes. Thanks again for your participation in PatientsLikeMe.
Michael Massagli"
Does this sound like they are still going to use my answers for their survey, in spite of me writing to them and withdrawing permission?
Patricia Carter
There's a BIG difference between Psychological Breakdown and Cognitive Breakdown due to a CNS Illness. I did not have to go to Psych school to learn that.
ReplyDeleteThis is particularly SCARY because we have a psychiatrist messing in the brains of a person who has undergone Neorological Stress as well Neurological Trauma. True and Good Neuro psychologists and Neuro Psychiatrists gingerely work with these situations. My son Blake sees a PhD Nuero Psychologist for a REASON. They are trained in how to deal with Brain Stress, Trauma and Damage.
The SCARY part of these studies is the aftermath. What happens when; those that are told that "they can change their physical conditions with their mind"; eventually have a major meltdown nuerologically and immunologically?
As a Psychiatrist, I would think they would stay away from Injuries and Chronic Illnesses which have Brain involvement. We are NOT Monkeys. This can be Harmful.
Post Script to my last comment: I wrote to Dr. Massagli and asked him to confirm that they will not use my answers, and he responded.
ReplyDelete"I confirm that your responses will not be used in our research. Thank you for being in touch. Michael Massagli"
Patricia Carter
Mindy,
ReplyDeleteA problem with this study is they didn't ask by what criteria/ definition patients were diagnosed. so obviously there will be idiopathic CF patients in there from the Oxford def. I asked if they could at least break it down by country and he said yes.
Dr. Wicks asked me to convey to you that he did not work with Prof. Wessely and was in another building working in a different field. He says there are thousands of people that work at IoP. He says he 'believes' us. He would like you to remove what you said about him.
Justin,
ReplyDeleteI did not say that Wicks worked with Simon Wessely. I said Keith Petrie did several studies with Wessely. About Wicks, I said:
"Wicks received his doctorate from the Institute of Psychiatry, King's College London, where Dr. Simon Wessely serves as vice dean for the department of psychiatry. At King’s College, Wicks’s supervisors were Dr. Laura Goldstein and Dr. Sharon Abrahams. Dr. Laura Goldstein helped draft Matthew Broome’s journal article 'A neuroscience of hysteria,' which categorizes chronic fatigue syndrome as a 'somatoform condition.' "
On his PatientsLikeMe page, Wicks says, "I'm a research neuropsychologist specialising in the emotional and cognitive effects neurological conditions can have; particularly ALS/MND and Parkinson's disease."
The ME/CFS study Keith Petrie is doing for PatientsLikeMe measures how patients perceptions affect their disease. From PatientsLikeMe's Dr. Mike Massagli: "Conducted in collaboration with Professor Keith J. Petrie of University of Auckland (Auckland, NZ), a leader in the field of understanding illness perceptions and their impact on health outcomes..." That's the British "illness perceptions" nonsense, which means, as I said in this post: One’s “perceptions” cause the illness. That's Simon Wessely's position as well.
I don't know what it means when Wicks told you that he "believes" ME/CFS patients. Many psychologists say that they believe the patients. They believe that the patients are sick, but they believe their illness is psychological/biosocial and that the patients "perceptions" cause their disease.
If Wicks wants to discuss the study and his views on ME/CFS, he can reach me at mindykitei.cfscentral@comcast.net
I am always concerned about sites like PatientLikeME. In the past I had read articles about using the Internet to monitor medical illnesses so when PatientsLikeMe came out, I was intrigued. I would caution people who sign up for such sites to READ THE PRIVACY POLICY very carefully as sites like this sometimes sell your information to pharmacuetical and other agencies for a price. That is how they stay afloat. It's OK for them to do this as they are providing people with a way to track their illness and see how others with their illness do but do go into it with open eyes.
ReplyDelete