Most members of the CFS community are very well aware of Professor Simon Wessely. He is one of the world’s leading proponents of a psychosomatic model of CFS. Professor Wessely’s Wikipedia page can be found here: http://en.wikipedia.org/wiki/Simon_Wessely
A ‘King’s College London’ biography of Professor Wessely’s career can be found here: http://www.iop.kcl.ac.uk/staff/profile/default.aspx?go=10206
I would first like to thank Professor Wessely for replying to me. Several weeks ago, I emailed 5 different CDC officials and I have still not received a reply from one of them. I’d also like to thank Professor Wessely for giving me permission to post his replies on my blog.
My letters to Professor Wessely are presented with only personal information about me and private messages for Professor Wessely removed. I have removed these parts for the primary reason that they are not relevant to the argument of psychosomatic vs organic CFS. Professor Wessely’s emails to me appear verbatim as he sent them- I have copied and pasted them. The email conversing between me and Professor Wessely took place between the 1st of August 2010 and the 3rd of August 2010.
My first letter to Professor Wessely:
Dear Professor Wessely,
I am writing this letter for several reasons. The first is to share with you what one of my University professors shared with me. When I was a university student, one of the professors told me the story of when he was sitting in a lecture at his university in his youth. An elderly man had been giving a lecture to a room full of students. This elderly man had spent his entire life working on a specific scientific theory.
During the middle of the lecture, a young man walked in, interrupting the lecture. He took a piece of chalk and explained in 5minutes why the elderly man’s specific scientific theory was wrong. He drew up a few equations on the blackboard and convincingly destroyed the elderly man’s theory and everything he had worked on for over 40 years. Not only did the younger man prove the elderly man’s theory wrong but he did it in front of an entire lecture hall, full of the elderly man’s students.
The elderly man looked over the younger man’s writing and equations on the blackboard and pondered everything for a few seconds. The elderly man then shook the younger man’s hand and told the younger man “Thank you.”
Despite spending his entire life on a theory that had just been proven wrong the elderly man didn’t persist believing in his original theory. The elderly man didn’t get angry and didn’t feel embarrassed about being proven wrong in front of hundreds of students. The elderly man was grateful for the advancement of science. This is the mark of a true scientist. This is what true science is all about. When a superior theory comes along or a current theory is proven wrong it is the mark of a true scientist to change their opinions.
I am appealing to you as a scientist, not as a human being with frailties and cognitive biases. I am appealing to you in light of the extensive evidence of CFS as a physiological illness that was not previously present. I am appealing to you as a utilitarian. I am appealing to you to distinguish Canadian Consensus Criteria from CDC Criteria CFS.
It is easy to group all cases of the misnomer that is CFS together. In the infancy of all illness knowledge, separate illnesses have been grouped together. As more is learnt regarding subgroups and specifics of the illnesses, the general illnesses classification has branched off. By classifying illnesses, scientists learn more about each individual illness.
I am disheartened to learn that my illness of CCC CFS has been clumped together with CDC defined CFS. I do not believe people who on average work for 48 hours a week and were found by a phone survey and have different symptoms compared to me are typical of me. I like to think that if a study is done of my illness, a large portion of those being studied resemble me.
I am therefore appealing to you as a scientist to create a dichotomy between CCC CFS and CDC criteria CFS. After spending a lifetime working on CDC criteria CFS, I appeal to you to make it clear that you have been studying a different illness to CCC CFS. I appeal to you to act like the elderly man in my above true story who set aside various complexes, frailties and aspects of the human condition to be a scientist. I appeal to you to benefit patients worldwide and advance scientific knowledge.
Due to your focus and improvement in symptoms of CDC defined CFS patients, I am sure many CDC defined CFS patients seek your professional advice as a medical consultant. CCC CFS patients are often very sceptical of your practices and I therefore assume that a smaller percentage of these patients visit you for medical advice.
It is often very difficult for a doctor to gauge their patient’s response to treatment. If a patient stops seeing a doctor for a chronic illness, it may be due to going into remission or having their condition deteriorate. The lack of certainty here makes gauging medical response difficult. It is for these above two reasons that I assume a skewed non- representative section of the CFS community have visited you. CCC CFS patients tend to visit; general physicians, endocrinologists, neurologists, rheumatologists and infectious disease specialist etc.
The list of those who compiled the Canadian Consensus Criteria include :
“Bruce M. Carruthers, MD, CM, FRCP(C)
internal medicine, Saanichton, British Columbia.
Anil Kumar Jain, BSc, MD
affiliate of the Ottawa Hospital, Ottawa, Ontario
Kenny L. De Meirleir, MD, PhD
Professor Physiology and Medicine, Vrije Universiteit Brussel, Brussels, Belgium; ME/CFS researcher and clinician; organizer of the World Congress on Chronic Fatigue Syndrome and Related Disorders; a board member of the American Association for Chronic Fatigue Syndrome; co-editor of Chronic Fatigue Syndrome: Critical Reviews and Clinical Advances, co-editor of Chronic Fatigue Syndrome: A Biological Approach, and co-editor of the Journal of Chronic Fatigue Syndrome.
Daniel L. Peterson, MD
affiliate of the Sierra Internal Medicine Associates in Incline Village, Nevada; ME/CFS researcher and clinician; a board member of the American Association for Chronic Fatigue Syndrome; and member of the International Chronic Fatigue Syndrome Study Group.
Nancy G. Klimas, MD
Clinical Professor of Medicine in Microbiology/Immunology/Allergy and Psychology, University of Miami School of Medicine; ME/CFS researcher and clinician; a board member of the American Association for Chronic Fatigue Syndrome; member of the federal CFS Coordinating Committee.
A. Martin Lerner, MD, PC, MACP
staff physician at William Beaumont Hospital in Royal Oak, Michigan; Clinical professor and former chief of the Division of Infectious Diseases at Wayne State University’s School of Medicine; and ME/CFS researcher and clinician.
Alison C. Bested, MD, FRCP(C)
haematological pathologist; former head of the Division of Haematology and Immunology ath the Toronto East General and Orthopaedic Hospital; affiliate of the Environmental Health Clinic and Sunnybrook & Women’s College Health Sciences Centre, Toronto, Ontario;ME/CFS researcher and clinician.
Pierre Flor-Henry, MB, ChB, MD, Acd DPM, FRC, CSPQ
Clinical Professor of Psychiatry, University of Alberta; Clinical Director of General Psychiatry and Director of the Clinical Diagnostic and Research Centre, both based at Alberta Hospital in Edmonton, Alberta, Canada; ME/CFS brain researcher
Pradip Joshi, BM, MD, FRCP(C)
internal medicine, Clinical Associate Professor of Medicine at Memorial University of Newfoundland in St. John’s, Canada
A. C. Peter Powles, MRACP, FRACP, FRCP(C)
Professor Emeritus, Faculty of Health Science, McMasters University, Hamilton; Professor, Faculty of Medicine, University of Toronto; Chief of Medicine and Sleep Disorders Consultant, St. Joseph’s Health Centre, Toronto; Sleep Disorder Consultant at the Sleep Disorder Clinic at St. Joseph’s Healthcare, Hamilton, and Central West Sleep Affiliation, Paris, Ontario
Jeffrey A. Sherkey, MD, CCFP(C)
Formerly in Family Medicine, affiliate of the University Health Network, Toronto, Ontario; and diagnosed with chronic fatigue syndrome nearly 10 years ago. We regret that Dr. Sherkey has since passed away.
Marjorie I. van de Sande, B Ed, Grad Dip Ed
Consensus Coordinator; Director of Education, National ME/FM Action Network, Canada”
I argue that these CFS specialists treat a much higher portion of CCC patients than your good self. I therefore believe that these specialists are the appropriate authority concerning CCC CFS while you are the appropriate authority for CDC defined CFS. These specialists want to distinguish CCC CFS from CDC defined CFS however some individuals perpetuate the antiquated notion that all people suffering from the similar symptom, fatigue, should be grouped together with little regard for other symptoms.
My only criticism of your work is that you clump all cases of CFS together. This skews the results of studies and isn’t helpful to determine etiologies and treatments.
In conclusion this letter has discussed,
- The elderly professor’s reaction to learning that his theory was flawed and how modifying one’s viewpoint regardless of years of having a different theory is the mark of a true scientist.
- It is necessary in all medical matters known to me that distinguishing subgroups of an illness aids in treatment, studies and determining etiologies.
- I don’t believe CDC criteria patients are typical of me in any way. The average patient can work for 48 hours a week and I am moaning in pain and bedbound, I don’t believe studying these patients is helpful to me or other CCC CFS patients.
- I assume from basic logic that you see a non-representative selection of CFS patients, more skewed towards CDC defined CFS which may cloud your judgment on what should be a representative selection of all CFS patients.
- The CCC criteria were determined by specialists who see a much larger percentage of CCC patients than your good self. Also the number of specialists that created this criteria is more representative of a larger number of CFS patients, greater than the number you see.
- Patients sharing a common arbitrary symptom, fatigue, shouldn’t be grouped together for etiology studies and similar treatments. Applying the science of classification continues to be helpful to further our knowledge of illnesses.
For these reasons, I urge you to announce that CDC defined CFS should be studied as a separate entity to CCC CFS. I encourage you to act like the elderly professor in the story I shared with you and humble the world with the actions of a true scientist.
Thank you for your time and thank you for reading my letter.
I am eagerly waiting your reply.
Professor Wessely’s reply to this letter can be found in Part 2.