Health Newsfeed – Johns Hopkins Medicine Podcasts

It’s the 100th anniversary of the so-called ‘ketogenic’ diet, which helps to control epilepsy in children and adults, and can even allow some of them to stop taking medications for the condition. Eric Kossoff, a neurologist and pediatric ketogenic diet expert at Johns Hopkins, describes what such a diet entails.

Kossoff: The diet is a 90+ percent fat diet. And in order to realistically be on a diet like that, most families really do need the guidance of a dietician in terms of measuring and calculating what to eat. Having a gram scale, weighing the foods is how we do the classic ketogenic diet, and there is a version called the modified Atkins diet which we created here at Hopkins, that even with that you’re still measuring carbohydrates per day using a book and keeping track.  :32

Kossoff says if you would like to try the diet, don’t go it alone. Expert advice and monitoring is needed. At Johns Hopkins, I’m Elizabeth Tracey.

The ketogenic diet, which relies on fats and proteins as energy sources and avoids carbohydrates, actually began 100 years ago as a means to control epilepsy in both adults and children and was also used for a host of other conditions. Eric Kossoff, a neurologist at Johns Hopkins and ketogenic diet expert, says after a lull in popularity, the diet is now more popular than ever.

Kossoff: It is no doubt more work than taking a medicine. Not to say all medicines are perfect, they all have side effects but it certainly is less of an imposing situation on a lifestyle to take a medication. The ketogenic diet, which is a high fat, low carbohydrate diet, no matter which version of the diet you do, requires supervision, it requires often a dietician involved, to help with weighing and measuring and calculating. It’s not easy.  :26

Kossoff says depending on which type of epilepsy one has, the ketogenic diet can actually control seizures virtually entirely, and can work in both children and adults. At Johns Hopkins, I’m Elizabeth Tracey.

Among doctors who specialize in cancer treatment, only very few broached the subject of end of life decisions with their patients, even when an analysis of recordings of their encounters pointed toward an opportunity to do so, a recent study found. William Nelson, director of the Kimmel Cancer Center at Johns Hopkins, examines the data.

Nelson: The trial had something like 141 patients talking and 31 providers at 2 academic centers. When they looked back at 423 encounters, and found that only 5% or 21 involved formal end of life discussions. They did believe that 38% of the recordings that they listened to provided an opportunity for an end of life discussion that may have been missed.  :24

Nelson says in his own practice he begins a discussion of end of life preferences at the very first visit, before such decisions really must be made. He advises patients to bring up the issue themselves if their physician doesn’t do so, so that their wishes are known. At Johns Hopkins, I’m Elizabeth Tracey.

Bringing a new drug or biological agent to market is extremely expensive, a fact many manufacturer’s cite in pricing. Now a new study points to the fact that new agents are also very expensive in terms of human capital. William Nelson, director of the Kimmel Cancer Center at Johns Hopkins, explains.

Nelson: They ended up looking at 120 drugs and biologics. Thirteen of these secured FDA approval within this eight year span.  They found that almost 160,000 people had to be enrolled in more than 1300 clinical trials testing the agent, almost 48,000 in trials that led to approval, almost 111,000 in trials that didn’t lead to approval, and so they took a guess that there’s about 12, 217 participants in clinical trials per approved drug.  :30

Nelson says a single participant can cost between $10,000 to $100,000 to enroll and follow in a clinical trial. At Johns Hopkins, I’m Elizabeth Tracey.

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.

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.

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.

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.

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.

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.