Interesting reading from the JAMA

Discussion in 'Fibromyalgia Main Forum' started by Kurt, Sep 9, 2002.

  1. Kurt

    Kurt New Member

    I found this article at JAMA's (Journal of American Medical Association) website.

    Fibromyalgia: Is Recovery Impeded by the Internet?


    In his review article on fibromyalgia, Goldenberg1 stated that "the diagnostic label itself does not promote sickness behavior unless it is used as a substitute for patient information and education." While this may be true of many patients with many illnesses, I think it questionable whether this applies to many sufferers with what is diagnosed as fibromyalgia. It would be a complacent physician who would assume that provision of a diagnosis and some "official" patient information about this disorder would be sufficient to satisfy most patients. In the current state of knowledge about fibromyalgia, the information available often raises more questions in the patient's mind than provides reassurance. The dissatisfaction with the outcome of the consulting process is reflected in the frequency with which second, third, and many other opinions are sought. This "physician-shopping" behavior does not only occur after consultation with skeptical doctors.

    Goldenberg's review overlooks one other important contributor to the fibromyalgia sufferer's worldthe Internet. Increasingly, patients seek to supplement the information given to them by their health care attendants. This is partly a reflection of natural curiosity and partly a manifestation of some patients' distrust of officialdom and of the allopathic approach to health matters. The proliferation of self-help groups for a myriad of diseases and conditions has been catalyzed by the evolution of a medium in which they may thrive. While this may be a good thing in many ways, it also opens the door to those with dubious or frankly dishonest motives and other opportunists to exploit the situation. What is the innocent individual with chronic unexplained pain to make of the vast amount of information available? For instance, a search launched today (November 1999) with the word fibromyalgia using the popular AltaVista search engine (http://www.altavista.com) returns an astonishing 156 270 links. A casual browse through some of these linked pages provides a confusing array of messages about the condition and its treatment. However, participation in this virtual community may also, I believe, reinforce the view of the person with fibromyalgia that he or she is ill.

    What is to be done about this? The Internet community would resist (quite correctly) any attempt to impose regulations on Web publishing, but, on the other hand, efforts to create an adequate voluntary system to assure quality have so far produced mixed results (Health on the Net Foundation, available at: http://www.hon.ch). Any voluntary code can and will inevitably be broken. One alternative is for the professional community to harness the power of the Internet, ideally in partnership with representatives of patients or the public. The recently announced Medem venture is one promising step in this direction (http://www.medem.com).

    A huge amount of Internet traffic is devoted to seeking health care-related information (e-Health), and there is intensifying interest in developing the means to assure quality in e-Health publishing. One other promising development is the announcement of a Summit Meeting on e-Health ethics to be hosted by the Internet Healthcare Coalition, scheduled for February 2000 (http://www.ihealthcoalition.org). It remains to be seen what progress will be made, but the fact that patients will be prominently represented in this meeting gives hope that its recommendations will genuinely influence publishing standards in the future. When that time comes, we as physicians may be able to point our patients to reliable sources of information about their problems that will help promote their recovery.



    Ray Armstrong, FRCP
    Southampton, England



    1. Goldenberg DL. Fibromyalgia syndrome a decade later: what have we learned? Arch Intern Med. 1999;159:777-785. ABSTRACT | FULL TEXT | PDF | MEDLINE



    In reply

    I agree that people with fibromyalgia and other related poorly understood syndromes, such as chronic fatigue syndrome, are especially vulnerable to media and Internet misinformation. Syndromes such as fibromyalgia are by their very nature confusing and controversial. We in the medical profession are unable to answer patients' concerns regarding etiology, therapy, and prognosis. Many of us would rather not deal with such nebulous and emotionally charged symptoms. Thus, people with these syndromes, hungry for information that we cannot or do not provide, turn to other sources. One third of Americans now access the Internet for health and medical information.1 The accuracy of such information is often suspect.2

    Recently, we evaluated 120 sites on the World Wide Web that were dedicated to fibromyalgia.3 Fifty-five percent of these sites were sponsored by patients with fibromyalgia and 14% by fibromyalgia "organizations" or "societies." Forty-six percent of the sites sold products. Less that 25% of sites provided reliable information on diagnosis, pathophysiology, and treatment. The quality of information on fibromyalgia found on the Internet was often poor and greatly affected by sponsor bias and commercial interests. As Sonnenberg2 suggested, we need to develop Internet sources of our own to ensure accurate information. More quality control and expert physician participation will be needed in order to prevent the Internet from becoming a misinformation superhighway.



    Don L. Goldenberg, MD
    Newton, Mass



    1. Jadad AR, Gagliardi A. Rating health information on the Internet: navigating to knowledge or to Babel? JAMA. 1998;279:611-614. MEDLINE

    2. Sonnenberg FA. Health information on the Internet: opportunities and pitfalls. Arch Intern Med. 1997;157:151-152. MEDLINE

    3. Goldenberg DL, Miller AM. Fibromyalgia on the Internet: a misinformation superhighway [abstract]. Arthritis Rheum. 1999;42:S151.

  2. Kurt

    Kurt New Member

    I found this article at JAMA's (Journal of American Medical Association) website.

    Fibromyalgia: Is Recovery Impeded by the Internet?


    In his review article on fibromyalgia, Goldenberg1 stated that "the diagnostic label itself does not promote sickness behavior unless it is used as a substitute for patient information and education." While this may be true of many patients with many illnesses, I think it questionable whether this applies to many sufferers with what is diagnosed as fibromyalgia. It would be a complacent physician who would assume that provision of a diagnosis and some "official" patient information about this disorder would be sufficient to satisfy most patients. In the current state of knowledge about fibromyalgia, the information available often raises more questions in the patient's mind than provides reassurance. The dissatisfaction with the outcome of the consulting process is reflected in the frequency with which second, third, and many other opinions are sought. This "physician-shopping" behavior does not only occur after consultation with skeptical doctors.

    Goldenberg's review overlooks one other important contributor to the fibromyalgia sufferer's worldthe Internet. Increasingly, patients seek to supplement the information given to them by their health care attendants. This is partly a reflection of natural curiosity and partly a manifestation of some patients' distrust of officialdom and of the allopathic approach to health matters. The proliferation of self-help groups for a myriad of diseases and conditions has been catalyzed by the evolution of a medium in which they may thrive. While this may be a good thing in many ways, it also opens the door to those with dubious or frankly dishonest motives and other opportunists to exploit the situation. What is the innocent individual with chronic unexplained pain to make of the vast amount of information available? For instance, a search launched today (November 1999) with the word fibromyalgia using the popular AltaVista search engine (http://www.altavista.com) returns an astonishing 156 270 links. A casual browse through some of these linked pages provides a confusing array of messages about the condition and its treatment. However, participation in this virtual community may also, I believe, reinforce the view of the person with fibromyalgia that he or she is ill.

    What is to be done about this? The Internet community would resist (quite correctly) any attempt to impose regulations on Web publishing, but, on the other hand, efforts to create an adequate voluntary system to assure quality have so far produced mixed results (Health on the Net Foundation, available at: http://www.hon.ch). Any voluntary code can and will inevitably be broken. One alternative is for the professional community to harness the power of the Internet, ideally in partnership with representatives of patients or the public. The recently announced Medem venture is one promising step in this direction (http://www.medem.com).

    A huge amount of Internet traffic is devoted to seeking health care-related information (e-Health), and there is intensifying interest in developing the means to assure quality in e-Health publishing. One other promising development is the announcement of a Summit Meeting on e-Health ethics to be hosted by the Internet Healthcare Coalition, scheduled for February 2000 (http://www.ihealthcoalition.org). It remains to be seen what progress will be made, but the fact that patients will be prominently represented in this meeting gives hope that its recommendations will genuinely influence publishing standards in the future. When that time comes, we as physicians may be able to point our patients to reliable sources of information about their problems that will help promote their recovery.



    Ray Armstrong, FRCP
    Southampton, England



    1. Goldenberg DL. Fibromyalgia syndrome a decade later: what have we learned? Arch Intern Med. 1999;159:777-785. ABSTRACT | FULL TEXT | PDF | MEDLINE



    In reply

    I agree that people with fibromyalgia and other related poorly understood syndromes, such as chronic fatigue syndrome, are especially vulnerable to media and Internet misinformation. Syndromes such as fibromyalgia are by their very nature confusing and controversial. We in the medical profession are unable to answer patients' concerns regarding etiology, therapy, and prognosis. Many of us would rather not deal with such nebulous and emotionally charged symptoms. Thus, people with these syndromes, hungry for information that we cannot or do not provide, turn to other sources. One third of Americans now access the Internet for health and medical information.1 The accuracy of such information is often suspect.2

    Recently, we evaluated 120 sites on the World Wide Web that were dedicated to fibromyalgia.3 Fifty-five percent of these sites were sponsored by patients with fibromyalgia and 14% by fibromyalgia "organizations" or "societies." Forty-six percent of the sites sold products. Less that 25% of sites provided reliable information on diagnosis, pathophysiology, and treatment. The quality of information on fibromyalgia found on the Internet was often poor and greatly affected by sponsor bias and commercial interests. As Sonnenberg2 suggested, we need to develop Internet sources of our own to ensure accurate information. More quality control and expert physician participation will be needed in order to prevent the Internet from becoming a misinformation superhighway.



    Don L. Goldenberg, MD
    Newton, Mass



    1. Jadad AR, Gagliardi A. Rating health information on the Internet: navigating to knowledge or to Babel? JAMA. 1998;279:611-614. MEDLINE

    2. Sonnenberg FA. Health information on the Internet: opportunities and pitfalls. Arch Intern Med. 1997;157:151-152. MEDLINE

    3. Goldenberg DL, Miller AM. Fibromyalgia on the Internet: a misinformation superhighway [abstract]. Arthritis Rheum. 1999;42:S151.

  3. caring

    caring New Member

    My point of view is one must always be careful as you have to know the source. That is hard to do when not in person.

    I've always felt that as a rule this site offers good information.

    I do agree that some sites will feed the diesease and not help it. Try to sell me something or group us all into one group and my hearing goes.

    So my great words of wisdom are "Be Careful Out There"

    Blessings
    pat
  4. Kurt

    Kurt New Member

    I would like to think I am an intelligent person. However, when I am surfing the net looking for information on treatment. It is extremely hard not to get sucked into some of the sites that suggest doing this or that or buy one of these or nine of those. A lot of us or in unreasonable pain looking for hope everywhere we can.

    Kurt
  5. UmiBear

    UmiBear New Member

    Probably most of us have been "burned" by Web sites on Fibromyalgia that turn out to be one giant commercial to buy a miracle "cure" or something like it. But there's also some good info on the Web. It has definitely helped me put it all into perspective, and in the beginning it helped validate what I was going through. Like most things in life, there are good and bad aspects to consider. Peace, everyone, and may you be Flare-up free today!
  6. PMangels

    PMangels New Member

    I am careful when I surf the internet. I'm sure there is a lot of misguiding information out there. I stick more closly to Dr Devin Starlanyl view since she has so many illness related to FM. For some reason I trust her. Also I think this site has reliable resources. I'm a very cautious person. If I'm not comfortable about something I shy away.

    Arlene