[T]he study pointed to a physical cause for an illness that the medical establishment had often snidely dismissed as psychosomatic. The research could not be ignored: it was published last month in Science, one of the world’s pickiest and most prestigious journals.If you're even passingly aware of the history surrounding ME/CFS, the article won't say much that you didn't already know. Still, it's worth a click-through and a glance just for what it tells us about the media's perspective on this disease, and how it may be shifting.
First, the article itself is pretty sympathetic. Note the use of the word "snidely" in the above excerpt. Note the lack of an interview with some random psychiatrist who claims (without providing any evidence) that it's all in patients' heads. There is a one-line quote from William Reeves of the CDC to that effect, but in context he comes across as an idiot.
Second, check out the photo at the top. Notice anything unusual about the photo?
That's Andrea Whittemore-Goad, a longtime ME/CFS patient and the daughter of the woman who founded the Whittemore Peterson Institute. She's using a nasal cannula for oxygen.
I've looked at my fair share of newspaper stories about ME/CFS. When they include a visual, it's usually stock footage of someone who looks (a) tired, (b) depressed, or (c) tired and depressed. The NYT photo is the first mainstream media image I know of that suggests sufferers might actually have medical needs.
Better late than never.
4 comments:
Yes, the NYT reporter had done a great job in gettng the "real" picture (words and photos) of what CFIDS is about. Kudos to the reporter.
Of course everything that comes out of Reeves' mouth makes him look just more and more stupid. You would think that the heads of the CDC would hide him away or retire him, but no, he is still there. Mike Miller at the CFSAC meeting said that both he and Reeves were detailed to the Swine Flu program, I guess that was to appease the CFIDS sick that Reeves was not playing in the XMRV/CFS arena. Miller also noted that the lab work for replication of XMRV would be done by the Retrovirus people and NOT Reeves shop = again, another means to appease us sick people. I'm NOT appeased - I want Reeves and his associates, his slimey contractors (ABT Associates and Emory University/MIND-BODY PROGRAM)invetigated by the GAO, IGs, Congress and a full audit by DCAA. I want them ALL put in jail and Reeves in jail for the longest period. I actually would love to see all the idiots involved get a pint of blood-type appropriate CFIDS blood, from a really sick and bedbound CFIDS person. THAT would be the best revenge - getting our blood.
Stay on top of all the good stuff and insights and hit my favorite writer/investigator's site (Hillary Johnson) www.oslersweb.com. Her blogs are great and hard hitting.
Thanks for this article, well done!
THIS IS FOR THOSE WHO ARE NOT AWARE THAT ONE OF THE "GOOD GUYS" ON THE CFSAC COMMITTEE IS UNDER FIRE AND MAY LOSE HIS JOB. THIS HAS BEEN REPORTED ALL OVER THE INTERNET AND THE FOLKS AT PANDORA ARE ASKING THAT WE ALL EMAIL DR. FRIEDMAN AND SHOW SUPPORT. THANK HIM FOR WHAT HE HAS DONE FOR US CFIDS SICK, HIS SUPPORT ON THE CFSAC BOARD AND ALL HIS OTHER EFFORTS IN GETTING CFIDS INTO THE MED SCHOOLS.
Dr. Ken Friedman’s Courageous CFSAC Testimony on CFS Education
November 12, 2009
Following is a transcript of Dr. Kenneth Friedman’s testimony at the CFS Advisory Committee Meeting Friday, Oct 30. Dr. Friedman is an active supporter of increased medical education regarding ME/CFS. But, as he notes in this testimony, his very position as associate professor of Pharmacology & Physiology at University of Medicine and Dentistry of New Jersey is in jeopardy because of these activities.
___________________________
Chronic Fatigue Syndrome Education in the United States
Testimony for the Chronic Fatigue Syndrome Advisory Committee, Oct 30, 2009
by Kenneth J. Friedman, PhD
Treasurer of the International Association of CFS/ME
Director of Public Policy for P.A.N.D.O.R.A., Inc.
Scientific Adviser to Lifelyme, Inc.
Board Member & Chair, Medical Student Scholarship Committee, New Jersey
Chronic Fatigue Syndrome Association
Board Member, Vermont CFIDS Association
Good morning! My name is Kenneth Friedman and I am a medical school professor. I have been asked by the IACFS/ME to comment upon the status of Chronic Fatigue Syndrome education in the United States.
Comments on the Academic, Medical School Environment
The Director of the Office of Ethics and Compliance of my employer has informed me that my off-campus activities related to CFS which include: testifying before this Committee, serving on this Committee, providing continuing medical education courses, establishing medical student scholarships and assisting with healthcare legislation are not part of my responsibilities as a University Professor.
I am told that I will be punished with a penalty as severe as termination of my employment for these activities. I am not a unique target.
• Colleague Ben Natelson has left the same school.
• A different medical school has refused to permit access to their medical students to discuss CFS or inform them of a medical student scholarship.
• A statewide health care provider, with no physician capable of managing CFS patients, refuses to permit a CFS training session for their physicians.
The failure of the CDC to convince the medical-academic establishment of the legitimacy of CFS, and the urgent need for its treatment, has created this environment.
Comments on Medical Student Education
High ranking officials of medical education have testified before this Committee that they are powerless to control the curriculum of medical schools, and cannot mandate the inclusion of Chronic Fatigue Syndrome in the medical school curriculum.
• Were the CDC to mandate the reporting of CFS to the Federal Government, as it does for other illnesses, the National Board of Medical Examiners would have no choice but to put CFS questions on the National Boards.
• If CFS questions were to appear on National Board licensure examinations, medical schools would have no choice but to include CFS in their curriculum.
I have appeared before this body on two separate occasions arguing for the use of existing student programs within both the NIH and the CDC to rotate medical students through NIH and CDC laboratories. I have pleaded for dialogue and feedback on any of my proposals. I have heard nothing.
The only mechanism for medical student education for CFS is the medical student scholarship programs run by patient advocate organizations. We now have programs running in three states. How many scholarship programs must be mounted by state patient advocate groups before the CDC mounts a single, national medical student program?
THERE IS MORE BUT SPACE DOES NOT ALLOW IT.
Thanks for the comments.
I really wonder what's going to happen with ME/CFS research at the CDC. I was happy when Miller said the retrovirus people would be doing the replications (not appeased -- I'd love to see Reeves and his posse in prison), but also worried. Yes, the retrovirus people will do actual biomedical research rather than useless CBT/GET studies. But how will they define the ME/CFS population? Will they know enough or care enough to use the definition that WPI used?
I already follow oslersweb.com and second the recommendation. Her recent breakdown of the CFSAC meeting made me grin.
I too enjoyed that article in the NYT. As for the CDC, don't even start me. Grr.
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