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Clinical trial results are required by federal law to be posted within two years of a trial’s conclusion, with data available on a website called ClinicalTrials.gov. A recent study looked at how often researchers are complying. William Nelson, director of the Kimmel Cancer Center at Johns Hopkins, says that number is just over half.

Nelson: Among the 7400, 7500 trials that did have their results reported, 38% of them were posted only on ClinicalTrials.gov, they did not appear in a scholarly publication. And I think what that probably is meaning is that ClinicalTrials.gov, as a registry function, may start to be a place where you can find trials results, even if the findings weren’t earthshattering enough to get into a scholarly publication. I think that’s probably where we’re headed.  :28

Nelson notes that even so-called ‘negative results’ are important in informing both the research community and the public about what doesn’t work, so moving toward 100% registration of results is an important goal. At Johns Hopkins, I’m Elizabeth Tracey.

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Black women often experience breast cancers that are more advanced at the time of diagnosis, and may be more difficult to treat. A recent study looked for the presence of different genes among Black and white women with breast cancer to perhaps explain this. William Nelson, director of the Kimmel Cancer Center at Johns Hopkins, describes the findings.

Nelson: They looked at a really large amount of data from a large consortium where the contributors were women with breast cancer back from 1993. These were women diagnosed with breast cancer, they’re not selected in any way for age, ethnicity, age of onset for breast cancer, whether they had a family history. They had data on inherited gene defects for 12 different breast cancer susceptibility genes that they know of, and the most interesting thing about this in looking for differences between black women and white women is that there aren’t many. It’s sort of a large non-story.  :34

Nelson says these findings suggest that screening and access to care likely are involved. At Johns Hopkins, I’m Elizabeth Tracey.

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Long Covid is being used to describe continued fatigue, pain, and impaired cognition following Covid-19 infection. Peter Rowe, a ME/CFS expert at Johns Hopkins, says these two conditions may be one and the same, and there are at least two strategies that can be tried to help.

Rowe: One other thing that we’ve found in the patients with prolonged Covid symptoms that merge into ME/CFS is that they have a huge burden of allergic inflammation. Recurrent oral allergy syndrome, with exposure to certain foods or pollens. Recurrent hives. We’re treating them with drugs you would normally use for allergic inflammation like regular antihistamines and a number of other treatments that are in that category. So some of the patients have had improvements as we’re addressed the allergic inflammation, others have had improvements if you treat their circulatory problem.  :33

Rowe says seeking someone with ME/CFS expertise may be wise if you’re not responding to other modalities in managing long Covid. At Johns Hopkins, I’m Elizabeth Tracey.

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If you’ve had Covid-19 and are still struggling with things like fatigue and pain months later, the virus may have triggered ME/CFS, the new term for chronic fatigue syndrome. Peter Rowe, a ME/CFS expert at Johns Hopkins, says the good news is there are several options for managing it.

Rowe: Unfortunately I think people have not been paying much attention to ME/CFS in the general medical world over the years, but we’ve learned how to treat these orthostatic disorders at least in the majority of patients we can provide some medication that helps control blood pressure better, normalize it, normalize the heart rate and get blood flow up to the brain more effectively. The approach I hear about a lot in the post-Covid clinics though isn’t really focusing on that as much as I think it needs to.  :30

Rowe says if you’re being seen in a post-Covid clinic and things aren’t improving, it could be that ME/CFS is the culprit. At Johns Hopkins, I’m Elizabeth Tracey.

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The chronic medical condition called ME/CFS, the new term for chronic fatigue syndrome, can be triggered by Covid-19 infection, even when the acute illness seems mild. That’s according to Peter Rowe, a ME/CFS expert at Johns Hopkins, who says the mechanism is still unknown.

Rowe: So it could be that there’s inflammation in the brain from direct invasion of the virus. Others are noticing that these orthostatic disorders are starting maybe two weeks after the infection suggesting that perhaps its as the body is making antibodies to coronavirus. Those antibodies are also somehow attacking the individual. And we’re had lots of evidence of other autoantibodies being measurable post-Covid.  :27

Rowe says many cases of what is being called ‘long Covid’ are likely ME/CFS triggered by the infection, and the good news is there are several options for management and treatment, beginning with recognition that ME/CFS is present. At Johns Hopkins, I’m Elizabeth Tracey.

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Myalgic encephalomyelitis/chronic fatigue syndrome, or ME/CFS for short, is a composite term for a constellation of fatigue, pain, cognition issues and other symptoms of unknown cause. Peter Rowe, a ME/CFS expert at Johns Hopkins, says this also describes many cases of so-called ‘long Covid.’

Rowe: People can have really very mild respiratory illnesses with Covid that are debilitating from the beginning because they have such tremendous lightheadedness, cognitive fogginess and difficulty with concentration. And they are, after six months, meeting the criteria for what we now call ME/CFS. The new term for chronic fatigue syndrome and it looks like Covid-19 is yet another of the infectious triggers of this prolonged fatiguing debilitating illness.  :31

Rowe says this syndrome must be distinguished from post-ICU syndromes in those who’ve had severe Covid-19, because their management is very different. At Johns Hopkins, I’m Elizabeth Tracey.

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Apps to monitor things like physical activity, food intake and other aspects of health abound, with a new study in the BMJ showing that on Google’s platform, the majority of those apps get as good as they give, since they’re harvesting a wealth of data about you. Seth Martin, a cardiologist at Johns Hopkins and one developer of a health app called Corrie, explains.

Martin: That was in impressive large scale analysis of the Google Play, of the Android app store looking at mobile health apps. They looked at over 20,000 apps and then they ended up focusing on about 15,000 that were free to download. They really had sophisticated ways that they looked at apps and I don’t think it’s surprising that the apps are collecting a lot of data, sharing a lot of data, and that the privacy policies were not as transparent or accurate as they needed to be.  :29

Martin says for now, you need to be very vigilant about your apps and privacy settings. At Johns Hopkins, I’m Elizabeth Tracey.