Our “Updates” site traffic has gone through the roof ever since the beginning of this year when we opened it up to unregistered visitors. Given recent emails addressed to me as well as comments in other forums that were forwarded to me, I think it is time we re-stated for the record what CLL Topics and Updates is all about. I am very sure I cannot please all people all the time. But I would like to take a shot at explaining what it is we are trying to do – and what we cannot claim to do. Perhaps we can short circuit a lot of frustration and wasted time – yours and mine.
I try hard to back up the technical information I provide with relevant and credible professional articles. We publish the abstracts and encourage you to read the full text articles for yourself. What constitutes professional credibility? To some degree, that is in the eyes of the beholder and reasonable people can agree to disagree. But I think few people would disagree that an article authored by experts such as Dr. John Byrd in the latest issue of “Blood” is both credible and relevant. Such an article was the basis of my recent article on Revlimid. The logic for the “chemoprevention” clinical trial we reviewed is based on Dr. Byrd’s article. The clinical trial itself is listed under clinicaltrials.gov and being conducted at Roswell Park, one of the expert centers for blood cancers.
It is not my research, not my conclusions. I do not write the papers, I do not conduct the clinical trials. True, it is my voice; but I am merely the layperson reporter, not the researcher. My qualifications are listed on our websites, please take the time to read them. Then judge the value of my analysis accordingly, as it seems appropriate to you.
Most of the time I touch base with the authors of the research before I publish my review. As a matter of fact, I exchanged several emails with Dr. Byrd regarding his very interesting paper on the immune modulating effects of Revlimid, before I wrote my review. We are fortunate in having a long list of CLL experts on our informal advisory board and their feedback is very important to me in validating my understanding of the research.
Analysis and Interpretation
One of the ways in which CLL Topics and Updates differs from other inter-net sites is that I try to provide analysis of the papers that I highlight. I try very hard to stay true to the published article and at the same time translating the jargon into plain English. If this is not to your liking, if you think in the process of my translation the message is distorted, you should read the articles themselves and cut me out as a middleman. That is not only your right it is also something I strongly advice you to do. Science is always best served in the original format, as the original researchers intended.
Do I have a bias in what articles I choose to review and is the message influenced by my own perspective? You bet!!! I see the world through my own two eyes, my perspective is obviously colored and influenced by own background and education. For example, we do very little by way of reviewing alternative medical practices because of my lack of familiarity or comfort with such practices. Fortunately, there are many forums on the web that cater to patients looking for such information. Once again, I can only do what I can do, you would be foolish to expect me to do otherwise or be all things to all patients.
WE ABSOLUTELY, POSITIVELY DO NOT CLAIM TO PROVIDE YOU WITH MEDICAL ADVICE. Folks, I am not a medical doctor, I have no formal medical training of any kind. Zip. Nada. None. The best I can provide you is my layperson perspective on what I think of the countless research papers and clinical trial protocols I read till my eyes bug out.
Two phrases I use over and over in my articles are “Buyer Beware” and “Devil is in the details”. You are the buyer, you have more skin in this game than anyone else. CLL Topics and Updates are just two more sites. Their value is only to the tune you think they are valuable. You make the call. It is both your right and your responsibility. PLEASE TALK TO YOUR OWN DOCTORS BEFORE YOU MAKE MEDICAL DECISIONS! I neither seek nor want that responsibility.
I realize that by running these websites I expose me and my family to slander and hate mail from inter-net “trolls”. There has been an up-tick in the number of hurtful emails I have received since the beginning of this year, when we decided to open Updates to all visitors. That decision may have to be re-visited later this year, only time will tell.
You have an absolute right to agree or disagree with my evaluation of any clinical trial. If you are a serious member of this patient community, on the occasions when you disagree with my assessments I think you owe me the same respect that I owe you. I do not think it is fair to question my personal integrity because your perspective is different from mine on a particular article or clinical trial. I will assume your opinion contrary to mine is your own honest opinion. I will not assume a conspiracy theory that you have been “bought” by a competing drug company for example. You owe me the same respect.
Cynicism has become the fashion, but sometimes it has a way of destroying valuable things. I cannot state this more clearly than this: I have not accepted nor will I ever accept one single cent from any company remotely connected with the health-care industry. When I travel on your business (such as the time I testified before the FDA for ofatumumab approval) I paid for my trip out of my pocket. When I was invited to address the Canadian Patient conference, the organizers paid for my airfare and hotel charges, but there was no additional fee or honorarium. A day may come when I am no longer able to continue this effort and therefore shut down CLL Topics and Updates, but they will never be sold – any more than I can bear to sell “Harvey’s Journal”, the account of my husband’s battle and eventual death. These sites have too much of my family saga imbued in them to allow such a travesty.
Clinical Trial Recruitment
As I said above, the analysis and evaluation I attempt to do on my sites are what sets us apart from other sites. I provide links and implore my readers to read the details for themselves. Can I guarantee the clinical trials I review favorably will pan out? Of course not. I do not have a crystal ball, no one does. That is the whole point of doing clinical trials, to get answers to questions we do not have answers to at this point in time.
Should you participate in clinical trials based solely on my evaluation? If you did, you would be foolish and abandoning your own responsibility to do due diligence, make up your own mind. I can recommend, but “Buyer Beware” and “Devil is in the details” are important mantras to remember. Frankly, it does not matter to me one way or the other, whether or not you accept my evaluation. I do not stand to make or lose a single cent based on your decision to volunteer for any clinical trial I review.
I understand a few people thought I stepped over the line because by the force of my recommendation I influence people and short-change the clinical trials I do not review or review negatively. Duh. We all try to influence people to see the world as we do. The best I can do is to try and do it as objectively as I can. You think this “job” should be done differently? More power to you, build your own soap box and do the heavy lifting of “influencing” people in the direction you think they should be influenced. Last time I looked, this is still a free country. We can always use a few more patient advocates that bring their own passion and hard work to the job.
When I get something wrong, I make sure you get to hear that too. Case in point: I waxed too optimistic about “Prochymal” technology using mesenchymal stem cells to control GVHD in allogeneic transplants. When the clinical trial results reported soon after were less than thrilling, I published that information as well. Remember Genitope and their custom vaccine clinical trial? We fought hard to include CLL patients in their trial. Unfortunately the trial was not successful and the company went belly-up. We reported that too, as soon as the disappointing news became available.
I cannot guarantee wisdom. I cannot guarantee I will always be right, or even that I will be right more often than not. But I can and I do guarantee integrity, honesty and calling it like I see it to the best of my ability. The only money that we get is by way of voluntary donations from our members. We do not do fund drives. We do not mail solicitation emails bugging you to send us your hard earned money. Last year we shut down donations half way through the year because we had reached our targets. I answer many hundreds of emails each month from patients looking for a little extra help. I answer them independent of whether or not they are donors. Not a very good business plan if I was looking to maximize my revenues, would you agree?
You must do your share of heavy lifting
CLL Topics and Updates have been fortunate in our grassroots support up to now. Please don’t stop now! I have noticed a drop off in the number of our registered members who bother to log-in and get involved in the discussions that follow each article. Each of your voices contributes to the value and feel of this site. Please participate in this effort. Updates will thrive or fail based on our community support. It is truly the wind beneath my sails.
I am told most inter-net sites are full of rude behavior, foul language and inconsiderate members. We have built a beautiful community, you and I, one where our people bother to be thoughtful, considerate, stay on topic and try to be empowered patients. It would be a shame if this forum withered away and died because you do not bother to do your share of heavy lifting.
Our webmaster (Radha) tells me that several of our registered members who have opted to get an email when we publish a new article are not getting their emails because they are getting blocked at your end. Please make sure your server does not bounce the emails back because of spam filters. If on the other hand you do not want to get the emails, you can certainly opt out of that feature. You can do it yourself or send an email to our webmaster and she will do it for you. The same thing goes for your personal emails to me, often asking for an article PDF or some other information. I cannot send it to you if your server blocks my response.