Today I want to address an important topic for people who, like me, are trying to inform readers in a realistic way, especially without falling into the trap of sensationalism. As you know, I write for passion. I am just a scientist who loves writing and I am not a journalist. My site does not host any advertising and never will. I aim to completely avoid imposing certain views. I also strive to not over-emphasize or distort any information which comes to me through newspapers or news on the net, and I prefer to personally translate into English every article that various Italian magazines publish.
I’m pretty skeptical and I love to read everything, and form an opinion based on various sources, because these days, as you know, due to the internet it’s very easy for anyone to access an endless amount of information on any topic. However, when you are approaching scientific articles, it often becomes difficult to understand the results of research published in books and magazines. Therefore, the literature research activities undertaken by journalists, bloggers, scientists, and scientific research enthusiasts, play an important role – they become intermediaries between the world of research and the general public.
The media contributes to spreading scientific culture largely without specific training or understanding, to enhance the perception of the importance of science in the field of human activities. In recent years, the types of scientific communications in the mainstream have multiplied.
A research conducted by the European Communities in 2007 found that 52% of European citizens are in favor of articles written by scientists regarding scientific information while only 14% prefer journalists as a main source. The remaining 20% stressed the role of both scientists and journalists in scientific communication. In Italy, scientific articles are mainly carried out by journalists: the number of Italian scientists active in popularizing the field of scientific communications is very limited.
In Europe, the non-disclosure of some research activities has increased the gap between scientific research and wider society. This has encouraged the spread of bad scientific information from the media, which has contributed to raising some false hopes in the medical field.
Some of the most visited Internet pages are from Wikipedia, the free collaborative encyclopedia, where anyone can search or add information. In addition to Wikipedia, there is a lot of online scientific information available on different sites including: research centres websites; peer-reviewed scientific journals and popular blogs, like mine.
Blogs, a term that comes from the combination of ‘web’ and ‘log’, or “diary on the net”, may be managed by one or more people (bloggers), which generally use simple language accessible to non-experts, managing to achieve a large number of users. One of the biggest limitations of blogs is that the bloggers do not always have competency in the topics. So unless the bloggers are in fact the scientists who more or less research the topics covered, the contents of any “post” are unreliable. Often, bloggers don’t even cite the sources from which they draw their information: this may create or feed misinformation, or worse; cause unnecessary alarm. In Italy, there are several blogs run by authoritative scientific journalists or researchers (eg. MedBunker).
Peer reviewed journals, however, publish the results of scientific studies reviewed by industry experts. They look at whether the current work may be published or whether it needs further changes and investigation. Articles are written almost exclusively in English using specific language of the the particular discipline and, for this reason the recipients are almost exclusively scientists in the field. All these features, therefore, make it very difficult for a member of the general public to consult scientific literature.
And then through social networks (Facebook and Twitter in particular), people have begun to share what they experience first hand, fueling a new form of journalism that involves the participation of readers. The development of this new kind of journalism, defined as collaborative journalism, is now considered very useful with regards to current events, but not for scientific communications. This is because these new findings are not neccessarily supported by data or confirmed by other researchers.
Unfortunately, the tabloids prefer to report facts from the point of view of a single person, usually not a scientist, without confronting the most authoritative and informed sources.
A few days ago in an interview with Dr. Paolo Muraro, the Italian neurologist who directs the Neuroimmunology group at the Centre for Neuroscience in the Brain Sciences Division, Department of Medicine at Imperial College London, we had talked about a famous case which has been covered by the Mail Online and the Mirror. The article was titled “I can walk again after years in a wheelchair ‘: Father with MS stands up Within DAYS of having stem cell therapy in Mexico” and it was the miraculous story of Eric Thomson (article) who was hit by a very aggressive form of MS, which, due to lack of funds by the British health system (NHS ) has recently started treatment in Mexico at a specialized center in HSCT (Haematopoietic Stem Cell Transplantation) with hematopoietic stem cells. He is currently obtaining apparently sensational results.
Dr. Muraro was already aware of many cases of patients who have been or who are planning to go to Mexico to travel to these centers and have stem cell treatment. The most important problem according Muraro is that “these centers have no transparency on what they do exactly and they do not interact with the scientific community in an open way. These are private centers that give a course of treatment which sometimes is not even completed.” “A treatment in private centers that do not provide data on their protocol and do not publish their results at a scientific level, creates problems.” Muraro also stated that “The media often sensationalise.“
Although it is not news that patients with malignant forms of multiple sclerosis have often frankly surprising reactions to immunosuppression treatment and hematopoietic transplantation, Muraro concluded that “the difference is that in those cases everyone knows the details to understand what the clinical evaluation of patients was and then what has been their response to treatment. In these media cases, however, they lack that kind of detail.”
“What causes confusion, in fact, – says Muraro – is how the media use this news: if is published an article about a man in a wheelchair who takes a miraculous treatment and is able to walk again, a patient who has been in a wheelchair for 20 years with a disability unfortunately consolidated by a damage to the nerve cells, reading this article may think that he/she can have the same kind of benefit. This creates false hopes which is very harmful to the people who nurture them. It is a a very sensitive subject and certain media unfortunately do not understand the need for moderation and accuracy in reporting stories of this kind.”
To gain some clarity, I personally contacted Eric Thomson and I put a few questions to him. After some brief exchanges, he confirmed what Dr. Muraro said. I took the opportunity to ask Eric some questions about stem cell treatments. I report here our brief exchange of words.
Hi Eric, I read your story on Mail Online. Is it possible to have a quick chat with you? I wanted to know if the treatment is real as it seemed so good.
The Mail Online headline was way OTT, but the story is correct. Fire away.
My first question is: when did you actually have the treatment in Mexico and how long are you going to stay under medical observation? I would be interested to know in what way you feel the Mail Online went over the top. What was the reality of the treatment for you? An important question which i felt the Mail Online also left out is whether you have an MS diagnosis still and if you experience any symptoms currently? I really appreciate your contact and would like to represent your story as realistically as possible for other MS fighters. Im not a tabloid journalist.
I started my treatment June 20th in Clinical Ruiz Puebla Mexico. 2×5 hours chemotherapy sessions, PICC line placement, 4 hours cell harvesting procedures and 2×5 hours chemotherapy. Stem cells returned, 10 days neutrapeanic, finally high dose infusion retuximab 3 hours, then discharged. All done in 28 days. I am the same as everyone else. I will still get sick like you. I will still see my GP. I still have PPMS I will still see my neurologist until he tells me otherwise. The story is correct but the headline is misleading. It is not a miracle. It’s world class doctors making a difference. Hope this helps.
Yes, thanks Eric. Are you going back to Mexico for the follow-up treatment?
No, I see my haematologist in the UK from now on. Need another 5 retuximab lower dose of 2 infusions every month for a year.
Oh okay. Is it a painful treatment? Can I also ask you a bit more about your life with MS. I know you were diagnosed 4 years ago. Is that right?
I was diagnosed in 2011 and PPMS told me: today is your best day. This will not improve just get worse. They were right, but faster than I thought. I worked until February 2015. as much as I could. As you can imagine pre HSCT When I had a bad day That was my best day not nice. Post HSCT I’m like; you have a bad day, “brush it off and start again tomorrow.”
Okay I understand now. I can only imagine. This is why I wanted to chat with you directly and I really thank you for your help.
In summary, Eric therefore appears to have found real benefit in this treatment and, as Dr.Muraro thought, Eric will now be treated in England continuing with cycles of rituximab. The fact remains that the news was distorted by several British tabloids, which did not provide any details on the real treatment Eric underwent. In my small way, I hope I have clarified these ideas to my readers.
I hope that there is an increasingly fair disclosure of information that enables everyone to be able to make informed choices about the various scientific subjects handled daily, and that readers take a critical view of the myriad of information that is often confusing and even unreliable available on the various mass media.
Carrada G., (2005). Communicating science: survival kits for researchers. Vol. 12. Alpha Test.
Featured image: Jerry Springer, American tv host