Friday, April 22, 2011

NOT ENOUGH INFORMATION


My nephew is a second-year medical student at Jefferson Medical College in Philadelphia, PA.  I asked him what he's learned about ME/CFS in school, and he said only one paragraph, and this is it:

CHRONIC FATIGUE SYNDROME typically includes widespread pain as well as the history suggestive of a preceding infection, tender lymph nodes, sore throat, and low-grade fever. Fibromyalgia and chronic fatigue syndrome share the symptoms of overwhelming fatigue and problems with memory and recall, but chronic fatigue syndrome is not characterized by the 11 or more tender points of fibromyalgia.

How can future physicians treat ME/CFS effectively if all they get is a paragraph of information--and not all of it correct at that?  Many patients with ME/CFS do indeed have the fibromyalgia tender points. 

In contrast, other diseases, including lupus, multiple sclerosis and Parkinson's disease each rate a full lecture at Jefferson and about 20 pages of notes.  And the school devotes several lectures to HIV/AIDS, including one class just on drug treatments.


16 comments:

  1. Thank you, Mindy,for pointing out the problems with the education of doctors in medical schools. I think your example might actually be better than what is being taught in some other medical schools, which is that if someone has "Chronic Fatigue Syndrome," they have a psychological problem. No wonder people suffering with M.E. have problems getting real treatment from physicians.

    Patricia Carter

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  2. Frequency and content analysis of chronic fatigue syndrome in medical text books. Jason LA, Paavola E, Porter N, Morello ML.

    Abstract

    Text books are a cornerstone in the training of medical staff and students, and they are an important source of references and reviews for these professionals. The objective of this study was to determine both the quantity and quality of chronic fatigue syndrome (CFS) information included in medical texts. After reviewing 119 medical text books from various medical specialties, we found that 48 (40.3%) of the medical text books included information on CFS. However, among the 129 527 total pages within these medical text books, the CFS content was presented on only 116.3 (0.090%) pages. Other illnesses that are less prevalent, such as multiple sclerosis and Lyme disease, were more frequently represented in medical text books. These findings suggest that the topic ofCFS is underreported in published medical text books.

    Aust J Prim Health. 2010;16(2):174-8.
    http://www.ncbi.nlm.nih.gov/pubmed/21128580

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  3. It's true. My friend is in residency at he said they taught next to nothing about CFS in school. There's still a perception medical field that it's not a disease to be taken seriously, I think.

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  4. CFS isn't really a disease and there's no such thing as ME/CFS, just another term that can be used to mean different things. When asked, no one will say -- but it is NOT a new name or even a name change. We need to demand clarity and consistency. We should not accept ME/CFS on these grounds.

    ME needs to be included and taught in med schools.

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  5. Wildaisy,

    That's true, it could be worse. However, my nephew hasn't had psychiatry yet. Stay tuned.

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  6. It seems crucial to me that doctors should be educated about the fact that over 90% of people with cfs show signs of sleep apnea. They have 80% of the blood volume of healthy people (form of diabetes insipidus). They have food allergies and sensitivities; low natural killer cells and other immune system problems; hpa axis abnormalities, etc. They should be treated differently using anesthetics when having surgery, etc. This is why is it so important to have centers of excellence in every big city. Patients will be much less likely to go round and round the health care system trying to find the right doctor to help them. Congratulations British Columbia for starting such a Center for your Province.

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  7. I think thats where Residency and heading into a "Specialty" come in....the student learns more about Rheumatology and a bit More about Fibromyalgia in this study. The 11 points of pain are pretty specific and the genetic predisposition although suspected, once again, a mystery although a reported 10 million folks in The U.S. have Fibro....very sad.

    The CFS...he/she would learn under Infectious disease/immmunology/virology and possibkly touched on in Neurology.

    I don't expect folks in 2nd year of med school to cover every disease. However, I would expect them to stop lumping Fibromyalgia with CFS; and start using the language of Rheumatology and infectious disease.

    Even at the 2nd year level...this is a sad paragraph. Hopefully, those text books will change in the near future. Excellent topic. This needs to change with the small print!

    Julia

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  8. to anonymous: where do you get your information about blood volume and diabetes insipidus? am actively looking into this but need sources..

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  9. David, generally over the years, I think I have read things from Dr. Cheney, Dr. Bell, Richvank, Dr. Teitelbaum, and I think there was an article in the Research, News and Articles page at Prohealth at one time. I think the low blood volume aspect is common. The tendency to mild diabetes insipidus may be less consistent. Maybe someone could try a poll at Phoenix Rising some time to find out the degree to which people are bothered by this.

    In our case, our daughter drinks huge amounts of water and even gets up to urinate a few times and drink water in the night too. Only one in our family that does this happens to have cfs.

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  10. Great blog, it's interesting to hear what's being taught.

    Urgh, ME/CFS has such a distinctive symptom set as per the canadian guidelines, you would think some of that would be incorporated into the text books.

    I'm also interested in the low blood volume source/s??

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  11. Mindy: I am sorry to post something not germane to your excellent post above. But, you know the Chase Community Giving is going on now and we must have as many people as possible voting for Whittemore-Peterson Institute (WPI) to get them the money for an assistant and a physician. Please post the direct link for Facebook Chase Community Giving for WPI - below. Thanks Mindy - Sharon.


    http://apps.facebook.com/chasecommunitygiving/charities/205904991-whittemore-peterson-institute-fo

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  12. David:

    I am not the other anonymous but at least on blood volume there are some studies:
    1. Chronic fatigue syndrome: comments on deconditioning, blood volume and resulting cardiac function.
    http://www.ncbi.nlm.nih.gov/pubmed/19534728
    2. Chronic fatigue syndrome: illness severity, sedentary lifestyle, blood volume and evidence of diminished cardiac function.
    http://www.ncbi.nlm.nih.gov/pubmed/19469714

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  13. The problem is less that doctors be educated about any specific illness than it is that they have not been taught, or screened, for how to THINK for themselves. To analyze what they see.

    The precepts of Osler have been lost, even as doctors give phony lip service Sir William Osler's famous quote: "Listen to the patient, he will tell you his diagnosis"

    "Listen to the patient" doesn't mean "Endure the patients tedious auditory vibrations until he stops, enabling the doctor to utter HIS preconceived judgement"

    In 1984, long before there was any CFS to be educated about, I had Dr Cheney completely baffled by an illness he had never seen before, but he LISTENED and believed that there must be some basis for it, even when testing didn't show anything strange.
    Or.. did it?
    There was ONE slight peculiarity that appeared on a standard blood test.
    My erythrocyte sedimentation rate was zero.

    Dr Peterson looked at it and said, "Doctors are trained that "the lower, the better", but a zero sed rate is too low, this is an abnormality"

    And that is all it took... for them.

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  14. The title says it all - medical schools are not providing enough information to be of any use to our doctors and allied health staff of the future.

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  15. HI Mindy, thanks for all your efforts over the past 2 decades to help educate the public. at RESCIND, INC, we have pushed for 23 years to get patients and doctors to try for ONE day each year to help inform the public about the serious natures of these CIND (Chronic Immunological and Neurological diseases). this year we are asking patients to write ONE heartfelt letter to President Obama and make sure that it arrives close to May 12th on the President's Desk. He reads 10 letters per night from "average americans who do not have access to high powered P.R. firms or Capitol Hill lobbyists". Would you be kind enough to list RESCIND, INC. on your list of places for patients to get information about M.E. , CFS, FMS, GWS, MCSS, and Chronic lyme. our URL is www.rescindinc.org.
    thanks in advance for your consideration. xo TMH

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  16. I am a middle-aged man who has had CFS for 10 years. It took me a while to accept that I can't cure this; I can only manage it. I have done that but regularly fall victim to the push-and-crash cycle: I feel good, do too much, and then crash. It takes weeks to get back to "normal." I take meds for mood (Prozac), sleep (Ambien) and pain (Flexiril) but Concerta has made the biggest difference; it regulates my energy level, helps me focus, and stabilizes my cognitive functions. I am able to be productive during the day (though I am still very tired at night). I hope this helps someone.

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