The rise of people power

Journal name:
Nature
Volume:
472,
Pages:
410–411
Date published:
DOI:
doi:10.1038/472410a
Published online

Calls in Canada for trials of a contentious treatment for multiple sclerosis illustrate how social media can affect research priorities, say Roger Chafe and his colleagues.

References

  1. Zamboni, P. et al. J. Neurol. Neurosurg. Psychiatry 80, 392399 (2009).
  2. Zamboni, P. et al. J. Vasc. Surg. 50, 13481358 (2009).
  3. Sundström, P. et al. Ann. Neurol. 68, 255259 (2010).
  4. Doepp, F., Paul, F., Valdueza, J. M., Schmierer, K. & Schreiber, S. J. Ann. Neurol. 68, 173183 (2010).
  5. CTV News. The Liberation Treatment: A whole new approach to MS (21 November 2009); available at http://go.nature.com/krl2o7.
  6. Canadian Institute of Health Research Joint Invitational Meeting on Multiple Sclerosis Research — Summary Report (2010); available at http://go.nature.com/drf2l5.
  7. Rudick, R. A. Nature Rev. Neurol. 6, 472474 (2010).
  8. Lerner, I. J. Cancer 53, 815819 (1984).

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Author information

Affiliations

  1. Roger Chafe is director of paediatric research at the Memorial University of Newfoundland, St John's, Newfoundland and Labrador A1B 3V6, Canada.

  2. Karen B. Born is in the Department of Health Policy, Management and Evaluation at the University of Toronto, Toronto, Ontario M5T 3M6, Canada.

  3. Arthur S. Slutsky is at St Michael's Hospital, Toronto, Ontario M5B 1W8, Canada, and King Saud University, Riyadh, Saudi Arabia.

  4. Andreas Laupacis is at St Michael's Hospital, Toronto, Ontario M5B 1W8, Canada, and King Saud University, Riyadh, Saudi Arabia.

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Comments

  1. Report this comment #20617

    Brian Owens said:

    I'm half convinced that Canadians are so enamoured with this therapy is because the doctor's last name is Zamboni...the same as the machine that cleans the ice at hockey games.

  2. Report this comment #20632

    Sandra Birrell said:

    I have had MS for 32 years (and still do), but I also was scanned and then treated with venous angioplasty for CCSVI by an American clinic.

    The more we connect this to MS and talk in terms of CCSVI being a "cause" or "cure," the longer it will take for people affected by malformed veins to get treated here in Canada. MS is one thing; CCSVI is another. The two are related, but the causal connection is not established and doesn't need to be for treatment of veins to occur.

    This condition is, in simple terms, akin to what happens in the lower extremities with varicose veins. The valves on veins sometimes don't work properly and, when that happens, blood can't effectively return to the heart. My left jugular vein trapped a column of stationary blood when I was upright because of a faulty valve at the base of my neck. I saw this on a Doppler ultrasound — my right jugular empties and collapses when I'm upright, as it is supposed to do, and my left one stays full of blood, but the blood doesn't move (it was a black circle on the Doppler, i.e., no movement). This situation is now corrected because the valve was disrupted with an angioplasty balloon.

    It's been almost a year and I haven't choked once on food and even my own saliva, something I was doing 5 times a day for the last 9 years due to a throat spasm. My bowel spasms of 10 years also stoppped immediately and haven't returned, for which I took at least 2-3 medications daily and held me hostage to my own home many days a month. My leg spasms were also a symptom of 9-10 years, used to torment me for 5-6 hours a day and were beginning to disrupt my sleep. They also stopped immediately and only returned for a minute or so for a few days when I injured my back (from overactivty!) and also when I had a severe virus. These mini-spasms stopped immediately again when my injury healed and the virus went away. I now take no drugs for symptoms whatsoever ($26,200 a year mostly paid by Canadian taxpayers).

    Yes, his name is Zamboni, but he is the latest doctor in almost 100 years of researchers to tie symptoms often attributed to MS to a vascular origin. These researchers didn't get much traction, especially when the MRI came on the scene and all focus for MS shifted to the brain.

    Along with a few others initially involved in the social media movement in Canada, we've formed a new Society called the National CCSVI Society. We do online and community patient education sessions (free), conduct advocacy for CCSVI with other agencies and the government, and support CCSVI research in Canada and globally.

    Yes, the face of medicine has changed because of CCSVI. My hope is it will keep evolving to bring access to all Canadians to a therapy with known risks (angioplasty is not new!) that has helped thousands already. This therapy provides relief for symptoms associated with neurological conditions with unknown etiologies, like MS, ALS, Alzheimer's, and Parkinson's. CCSVI seems to be a tiny piece of this puzzle and should be treated in persons with fatigue, headaches, spasms, and other chronic symptoms, of unknown origin.

  3. Report this comment #20653

    Bart Penders said:

    Chafe et al end their contribution with the suggestion to improve the scientific literacy of the public, media and politicians. This is, of course, a hope that is fully understandable from the perspective of a scientists. We consider our work to be so important that everybody needs to know something of it – if possible, a lot. However, many studies have shown that increased scientific literacy does not translate into a more positive attitude towards science (Brian Wynne devoted part of his career to finding this out). In fact, the more people know about a particular science, the more they experience the risks, as opposed to the benefits.

    Next to the fact that it does not change much in the relationship towards science, requesting to raise scientific literacy stills sounds like "you don't know because you do not understand" - a disrespect of all the knowledge the public does have. That there is no technical expertise is not important. Scientists do not have any detiled technical expertise about the inner working of the legal or lobby systems and find understanding their mortgages jusas difficult as the rest.

    Arguing for more scientific literacy does not do justice to alternative strategies for engineering credibility. However difficult it may be, we need to recognize that truth does not simply lead to credibility. The processes that grant credibility in academia ? proper methodology, rigorous peer review and diligent citation ? are not commonplace elsewhere. The majority of MS debates do not take place in scientific settings, but in popular magazines, on Oprah?s couch, on internet forums, in schools or in supermarkets. Credibility there determines whether or not people will support or resist treatments like liberation. This requires a cultural validity of authority.
    While science focuses on universally valid claims, public debate is guided by particulars, such as the comment by Sandra Birrel. She speaks of not choking anymore, having no spasms anymore and that here life has been improved. A well calibrated display of particulars allows for a ?metaphorical extension?, enabling a large chunk of the general population to relate to such stories. Solely sticking to facts and arguments is destructive for culturally valid authority as it does not satisfy their (and in fact, our) need for narratives.
    We need to realize that better science and improved dissemination does not any potential scientific credibility crisis. Certain individuals and some media play the game according to different rules – occasionally quite effectively. Everybody needs to be taken seriously as competitors in the public credibility marketplace. Engineering credibility implies demonstrating the ability to take doubts seriously, not to reject them as ignorant. Beyond the boundaries of the lab, emotions and narratives contribute as much as data.

    The rise of people power is a good thing, but it changed the rules of the credibility game. We need to learn how to play it. Dissidents like Zamboni, Dr. Atkins and climate sceptics (however we may be disgruntled by the content of their claims) have worthwhile lessons to offer here.

  4. Report this comment #20816

    Charisios Tsiairis said:

    Scientists should have an open-minded view on anything. I see no reason to prevent volunteers from trying a new therapy especially if they are fully informed about its implications. I personally find any decisions that this or that is too risky, not well-grounded, too unconventional extremely problematic for our advancement. Anything goes...

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