In News & Blog, SCI Research

I’m guessing you’ve seen the headlines:
Paralysed man Darek Fidyka walks again after pioneering surgery
Paralysed man Darek Fidyka walks again after treatment by British doctors on brink of ‘cure’

And so on….

For those of you who are familiar with my posts on stem cell treatments, you can probably guess what I’ve got to say. But make no mistake, I’m not the only one saying it. And this time, I’m not just commenting on the “treatment.”

I guess we were due for a sensational story that once again feeds the spinal cord injury cure hope hype. To be clear, I’m not against the quest for a cure. Quite the opposite, we must continue to support research that may someday lead to a cure. It’s just that this is an offensive manipulation of the media to achieve what? Fame? Probably not fame. More likely money. From what I read, the researchers are looking for funding for clinical trial involving 10 patients. That costs money. Lots of money. How better to attract it than with a splashy news release touting the recovery of walking in a man with complete paralysis.

Here are some of the problems:

  • They report their sensational claims based on the outcomes of one patient. That’s not enough to draw any conclusions about anything.
  • Complete paralysis does not equal complete spinal cord injury. From previous reports, there appears to be some sparing of the spinal cord in patients they studied. It may very well be that this patient had some sparing and may well have experienced some natural recovery of function.
  • The “walking” they report does not look very much like voluntary walking. The researchers must do a better functional, biomechanical and electrophysiological analysis of this to verify their claim.
  • Spontaneous recovery or physiotherapy could have lead to the recovery reported.
  • The claims of recovery cannot yet be attributed to the cellular treatment the patient received.

Others are reacting to this story, including ICORD’s Dr. Wolfram Tetzlaff. In an interview with CBC News, Dr Tetzlaff questions the results, stating, “We do know that this particular patient here was not completely injured. He presented as a completely paralyzed person, therefore was classified as complete. But when you read the paper, there was a little bridge left.”  He continues, “It’s entirely conceivable that the recovery we see in conjunction with the aggressive rehab training is due to that. So whether the cells are actually doing something or not is premature to say.” Read more on Dr. Tetzlaff’s response on ICORD’s blog post, “Progress in research leads to cautious optimism.”

Dr Charles Tator,  a senior scientist at Krembil Neuroscience Centre at Toronto Western Hospital provides further caution about the walking reported in the video released by the stem cell researchers, stating “We had an issue here of a quote ‘breakthrough’ that showed people walking after treatment for their injury which ultimately was proven to be a negative study.”

But here is another problem I have with Dr. Raisman’s reporting of the findings: in his interviews with the media, he states  “We believe that this procedure is the breakthrough which, as it is further developed, will result in a historic change in the currently hopeless outlook for people disabled by spinal cord injury.”

Yes, like Dr Tator, I also have a problem with the use of “breakthrough” but I have an even bigger problem with the last part of his statement, “the currently hopeless outlook for people disabled by spinal cord injury.”

Really? Is the outlook for people with SCI hopeless? Far from it. But I shouldn’t be surprised. While attending an international spinal cord injury conference in the 1990s, I attended a keynote address by Dr. Raisman on his research into olfactory ensheathing cells as a potential treatment for SCI. Sitting next to me was one of my best friends, a fellow PhD candidate and Gold Medal winning wheelchair basketball player who has a spinal cord injury. During his keynote address, Dr. Raisman referred to people with SCI as “poor unfortunates.” I turned to my friend and passed along my sympathies. I didn’t know he was a poor unfortunate.

It’s a miracle my friend has a happy family, a successful research career, and is an accomplished athlete. Pretty remarkable for a poor unfortunate.

There is so much that upsets me about the media release about an ambigious outcome in one patient, including the media’s over reaction to it. Unfortunately, I’m used to hyperbole being sold by researchers and media alike. Resigned to it, perhaps.

What really riles up is the perpetuation of the myth that a person with spinal cord injury is a poor unfortunate with a hopeless outlook. Coming from a researcher who has worked in the spinal cord injury field for 3 decades, this grossly irresponsible. Repugnant.

As we continue to search for a cure, we must continue to support people with SCI and their families so that they can adjust, adapt and thrive. Yes, thrive. We all hope for a cure in the future, but it might be in the very distant future. For now, let’s reinforce that one doesn’t need to be cured to be whole.

Update: A day after running the story of the research “breakthrough”, The Independent followed up with a thoughtful article entitled, “Spinal cord injuries and the realities of medical “breakthroughs.”” It’s refreshing for the media to follow up with something constructive like this.

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Showing 13 comments
  • mohee

    I am agree with you .as a spinal cord injury person I always see such irresponsible news and allegations about cure for sci .just mete fixing a chip and stimulating a muscle is not a cure and walking ability is only one of issues a person with sci has. Lack of sense ,bowel and bladder and sexual function are more important than walking. I would like to raise a campaign to ask sci people what are their major concern. Good luck.

    • Chris McBride

      mohee – thanks for commenting. You’ve identified many of the major priorities for people with SCI. In fact, there is a research study done Dr. Kim Anderson that found the functions you’ve identified are, indeed, often higher priorities for people with SCI than walking. This research paper is entitled, Targeting Recovery: Priorities of the Spinal Cord-Injured Population. Kim D. Anderson. Journal of Neurotrauma. October 2004, 21(10): 1371-1383. doi:10.1089/neu.2004.21.1371. Unfortunately, the paper can only be downloaded for a fee, but here is the abstract:
      In the United States alone, there are more than 200,000 individuals living with a chronic spinal cord injury (SCI). Healthcare for these individuals creates a significant economic burden for the country, not to mention the physiological, psychological, and social suffering these people endure everyday. Regaining partial function can lead to greater independence, thereby improving quality of life. To ascertain what functions are most important to the SCI population, in regard to enhancing quality of life, a novel survey was performed in which subjects were asked to rank seven functions in order of importance to their quality of life. The survey was distributed via email, postal mail, the internet, interview, and word of mouth to the SCI community at large. A total of 681 responses were completed. Regaining arm and hand function was most important to quadriplegics, while regaining sexual function was the highest priority for paraplegics. Improving bladder and bowel function was of shared importance to both injury groups. A longitudinal analysis revealed only slight differences between individuals injured <3 years compared to those injured >3 years. The majority of participants indicated that exercise was important to functional recovery, yet more than half either did not have access to exercise or did not have access to a trained therapist to oversee that exercise. In order to improve the relevance of research in this area, the concerns of the SCI population must be better known and taken into account. This approach is consistent with and emphasized by the new NIH roadmap to discovery.

  • Barb

    I’m not sure why you guys bothered to change your name from BC Paraplegic Association when your only frame of reference seems to be people with lower injuries who play sports and have families and live generally independent lives. Not to take anything away from those members, but that’s not the reality for many others.

    SCI is nothing to celebrate. It’s not an opportunity to thrive. Those kind of platitudes are frankly far more offensive than the attitudes of people wanting to cure paralysis.

    • Chris McBride

      Hi Barb,
      I think it is unfair to turn my one, specific, example into a sweeping statement that my and/or SCI BC’s frame of reference is that of people with a lower level injuries. SCI BC’s membership is highly diverse and our 57 years of operation has been and continues to be guided by people with all levels of SCI.

      We know that circumstances and challenges are different for everyone with SCI. But we also know that so many of our members with all levels of injury have found ways to find fulfillment and levels of satisfaction with their lives, even those with high level SCI. I know that this may be more the case in BC than elsewhere, but here is an interesting research study by K. Hammell, published in the journal, Spinal Cord ((2004) 42, 607–620: Quality of life among people with high spinal cord injury living in the community. One of the conclusions of the study is that “life with a high SCI can be rich and fulfilling if society is prepared to enable and support this.” This is not to say that everyone achieves this but it is evidence that it is possible. SCI BC very much believes this to be true and is here to support it.

      Quite frankly, it is not SCI that we celebrate. It’s people’s achievements and abilities (whatever they might be) that we celebrate. This is important, as it allows others to see those possibilities – sometimes directly applicable to them, sometimes to see that there are possibilities to be found in other ways.

      • Barb

        I appreciate that it’s not an easy job you have, trying to champion quality of life by putting a happy face on the catastrophic loss of bodily control and functions. I’m glad we can at least agree that SCI itself is a categorical negative.

  • void

    Actually the study draws their conclusion from six people.

    Also on the subject of drawing a conclusion from one subject, glad to hear about how rich lives all people depending on vents have based on your SCI friend!

  • Adrian

    I am a paraplegic and I have no objection to being told that I am unfortunate. I don’t know anyone with an SCI who would call their injury a fortunate circumstance. Hence, to deride this research on the grounds that a researcher, who has spent many years tying to reverse paralysis, recognises SCI as being an unfortunate event strikes me as a pathetic case against the research.

    • Chris McBride

      Hi Adrian, I appreciate your comments. To clarify my statements in the blog, I’d say that most SCI researchers are, at least in part, motivated by the positive impact they can make for people with SCI. They generally understand the need for their research and want to make contributions that will, ultimately, make a difference for individuals with SCI. I’m sure this is the case with Dr. Raisman.
      What I object to is researchers or biotech companies creating negative messaging about the lives of people with SCI and the hopeless condition they face. I disagree with this in general and even more so when they use such language to attract more money to extremely questionable research. I’ll admit that we all use rhetoric to support our cases for support, but sometimes people go too far, as in the case of Dr. Raisman, whose rhetoric many SCI BC members find offensive.
      In the case of the study in question, I do object to the interpretations and reporting of the findings. My connections with the SCI research community concur. I will, however, give credit to the media outlets that published follow stories about the need for caution in interpreting this study and how the broader perspectives of people with SCI.

  • Luca

    I see your point and I agree about the manipulation by the media and the use of the word “breakthrough”, specially if referred to the leatest news, but don’t think at people with SCI only as paraplegics, like your friend you bring as exemple. People with SCI are also quadriplegics who can’t even breath without help, and they yes, in my opinion, are poor unfortunate who have no way to live a satisfying or even a just decent life. We need a cure, and we need a soon as possible, for all the people with SCI and most of all for those people who can’t live a decent life. The only solution is a cure, no compromise.

    • Chris McBride

      Hi Luca and thanks for commenting.
      I know everyone’s circumstances are different and some will find it much harder to lead a fulfilling life than others for a very wide variety of reasons; however, I think it is important to note that even some people with very high level spinal cord injury do lead satisfying lives. I’m not saying they wouldn’t enjoy life more if they were cured (or enjoyed some level of functional improvement), but SCI BC knows many of our members who are ventilator-dependent quadriplegics have found a way to enjoy quality of life many would not have thought possible – through work, family life, community participation.

      This is all personal stuff and everyone is different, but, in the absence of a cure, when opportunities are made available, a fulfilling quality of life can be possible. SCI BC is here to help with that. We absolutely believe in the need for more research into finding a cure but we don’t want people to miss out on life waiting for it.

  • Tina

    I believe we are all looking for a cure but to be realistic there simply is no funding for research. Many people do go on and have productive lives but those are the only people we hear about. I bet for every 1 of these people there are 10 who feel like poor unfortunates. I’m not holding out hope. If there was a cure, how many of us would be able to afford it. You think they will give it out for free!

    • Chris McBride

      Thanks for your comments, Tina. I think you are right that there are a number of people who do feel like “poor unfortunates” and there are lots of reasons for that. However, if more money was invested in supporting these people, they would have more opportunities to lead more productive or fulfilling lives. If there ever is a cure, SCI BC will sure push hard to make it available to everyone!

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