Two weeks ago in my blog, I discussed a Yale News story that announced: “Yale researchers discover underlying cause of myeloma.” I pointed out that they had shown evidence that a lipid trigger factor was involved in the development of myeloma in patients with Gaucher’s disease – a rare metabolic disease. And for these patients only. This point was also emphasized in a Health News Review report. Subsequently, Yale News changed the headline of their news release to “Researchers link lipids to one third of myelomas” – conceding that for 70% of patients, there was no link!

But what about the 30% figure? Well, 31% of MGUS patients and 34% of myeloma patients have monoclonal proteins with affinity for lipids. What does this mean? Is this a causal link to the development of MGUS and/or myeloma? Maybe or maybe not. It could be some type of as yet unexplained cross reactivity. In the study’s discussion, the authors conclude, “Further studies in larger cohorts are needed…” And so for now, all we are left with is the evidence that myeloma in Gaucher’s disease is linked to lipids.

Misleading Medical News

This analysis highlights what is becoming an uncomfortable trend – misleading medical information in the news! Let me give you two recent examples. The first comes as the result of a question from a myeloma patient about the Zika virus. The patient asks, “While traveling to a country where Zika virus is present, what are the recommendations?” Well, this is obviously a very important question since myeloma patients have a reduced immune system and may be more susceptible to Zika virus. A recent NPR story, “How Scientists Misread the Threat of Zika Virus” highlights some of the confusion and questions surrounding this virus. The Zika virus was discovered in 1947 in the Zika forest in Uganda. However, until recently, the virus in Africa was not associated with the birth of children with small heads (microcephaly) nor a neurologic disease like polio called Guillain Barré Syndrome.

What has happened? Has Zika virus mutated to a more virulent form? Could other factors be involved—such as the toxic chemicals which were spread sprayed in Brazil to kill the mosquitos?; or the Oxitec GM male mosquitoes released to cause death to larvae if not blocked by tetracycline? One concern is that 15 million GM male mosquitoes have been released in Brazil, increasing the pregnancy rate in females—who are more likely to sting when pregnant. So is it Zika virus itself (maybe mutated), the chemicals, or the GM mosquitoes? It will take some time to sort all this out, and there are so many confusing stories in the news that it can be hard to get to the truth of the matter.

Bottom line: Myeloma patients should definitely avoid traveling to Zika-affected areas! Even if pregnancy is not a consideration personally, it may be for other family members or friends, and the risk of Guillan Barré, the polio-like condition, is real!

Crowdfunding Clinical Trials

Another topic in the news recently are reports of myeloma research conducted through crowdfunding. This research is separate from mainstream research and is focused upon projects given priority by a crowdfunding team. This is not necessarily good or bad, but it overlaps with ongoing national and other group efforts. For example, after much debate within the National Institutes of Health (NIH), the National Cancer Institute (NCI), and the Cancer Therapy Evaluation Program (CTEP), SWOG has been conducting a trial in “High Risk Myeloma” with Dr. Saad Usmani as the Principal Investigator. This is a priority effort – but also one claimed by some crowdfunders to be a project without funding, needing dollars for their researchers to work on.

How can this be? Is there funding or not? Do patients need to give their hard-earned cash for this separate effort? Is anything additional to be learned or gained in the big picture? Many questions and uncertain answers surround news of this crowdfunding approach to research.

Bottom, bottom line: It is hopefully clear that many complex medical issues are now in the news. Are they 100% correct as reported? Maybe not! Do patients need to be wary and aware? – For sure.

As these stories unfold—including the latest developments in what scientists are learning about “The Potential Hidden Toll of Zika” – I will do my best to identify any concerns that may emerge. 

Dr. Durie sincerely appreciates and reads all comments left here. However, he cannot answer specific medical questions and encourages readers to contact the trained IMF InfoLine staff instead. Specific medical questions posted here will be forwarded to the IMF InfoLine. Questions sent to the InfoLine are answered with input from Dr. Durie and/or other scientific advisors and IMWG members as appropriate, but will not be posted here. To contact the IMF InfoLine, call 800-452-CURE, toll-free in the US and Canada, or send an email to infoline@myeloma.org. InfoLine hours are 9 am to 4 pm PT. Thank you.

Comments

I just read your post of today and want to thank you for a well written cogent article.
Paul Theiss, mm patient

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