On May 17 the Davis Phinney Foundation (DPF) hosted a webinar on Medical Myths and Parkinson’s. Neurologist Benzi Kluger writes a blog on medical myths. In this webinar he discussed how to detect medical myths, the effect of unregulated supplements, and debunked myths surrounding cannabis, stem cells, deep brain stimulation, diet, and exercise.
A recording of this webinar is available on the DPF YouTube channel.
Dr. Kluger created a medical bullsh*t detector for the Resource section at the back of the DPF Every Victory Counts manual. Order your paper or digital copy of the Every Victory Counts manual at:
Dr. Kluger also has a two-part Medical Bullsh*t Detector blog post, which his family and friends said help them see bullsh*t where they didn’t see it before.
Part I – Untrustworthy Products and Unbelievable Ideas
Information on the Stanford Parkinson’s Community Outreach Program Parkinson’s website has already passed through our medical bullsh*t detector. Take a look at: med.stanford.edu/parkinsons.html.
More specifically, information on topics discussed in Dr. Kluger’s talk are on our Treating PD pages, including:
Cannabis on our Complementary Therapies page
Benefits of Exercise for PD
And now, on with my notes…
– Denise
“Medical Myths and Parkinson’s” – Webinar Notes
Speaker: Benzi Kluger, MD, University of Rochester Medical Center (New York)
Moderator: Melani “Mel” Dizon, DPF Director of Education
Webinar Host: Davis Phinney Foundation
Webinar Date: May 17, 2022
Summary by: Denise Dagan, Stanford Parkinson’s Community Outreach Program
Dr. Kluger started by defining “medical bullsh*t.”
You don’t always know when you’ve stepped in it. Using a bogus product or service may cause regrets or real medical issues. Generally, it is when somebody claiming to care about your health sells a product to help their wealth.
There are many ways this can happen:
- Quack or charlatan selling things they know to be useless
- Gurus with best-selling books promoting themselves and their fame
- True believers selling products they truly believe in, but…
- the products have never been tested or proven to be helpful
- Western medicine deceptive practices
- Alternative medicine claims – e.g., homeopathy
- Pharmaceutical companies – e.g., opioid crisis
- Doctors/surgeons accepting kickbacks from pharmaceutical and medical equipment companies
What made Dr. Kluger start writing a blog about medical myths.
He is from Colorado, where the Davis Phinney Foundation (DPF) is based, and has done a lot for DPF over the years. He recently moved to the Univ. of Rochester to start a neuro-palliative care program.
Palliative care is a branch of medicine focused on serious, chronic illness with the goal of improving quality of life. Palliative care practitioners look outside the traditional medical model to consider the whole patient. That includes addressing difficult emotions, spirituality, care partners and family interactions, planning for the future, etc. These issues are not usually addressed by traditional medical practice. Initially, palliative care focused on those with cancer, but it makes so much sense for those with neurological disorders, like Parkinson’s.
When the Covid pandemic began Dr. Kluger began realizing the extent to which people were being taken in by health-related charlatanism. Very intelligent people, even doctors susceptible to it.
One of the first situations where his patients were interested in unproven technology to treat Parkinson’s occurred when he was working in Colorado. A couple patients wanted stem cell therapy. He dissuaded them because, although stem cells have been studies, there is no evidence they are more effective than placebo for treating Parkinson’s.
Another couple patients went to Costa Rica or other places to get stem cell implants. This is called stem cell tourism. It is concerning because:
- The logic behind getting injected with stem cells in random places of the body doesn’t make much sense
- The origin of the stem cells is unknown
- There have been incidences of cancer from stem cell injections
What really got Dr. Kluger angry was a several NYT best-selling books. One was Grain Brain, which we will talk more about. The other was a ‘cure’ for Alzheimer’s recommending a whole list of supplements. Both these books had no real evidence behind them, but people believed the information in them because:
- The authors were convincing
- They offered a cure nobody else could offer (hope)
- They were best-sellers
These books, in addition to the Covid pandemic, brought the extend of medical misinformation to a new level.
Sadly, debunking one myth is not very fruitful because it will be replaced with a new myth in short order. That got Dr. Kluger thinking about how to:
- Immunize people against medical misinformation
- Give people the skills to recognize bullsh*t
- Empower people to advocate for themselves
- Do a better job of avoiding things that are often expensive, potentially dangerous, and unlikely to be helpful
Mel agreed that we all think we will be able to spot a scam but when we are in a bad spot, like bothered by Parkinson’s symptoms, we want to believe a product or treatment will be the answer. We are more driven by emotion than logic.
She has known people who have gone into debt for a treatment that is unproven, only to be unable to subsequently afford medical care that is helpful.
Telltale signs that something is a scam
Develop the ability to see with the eyes of a skeptic. Signs to proceed with caution:
1. Unbelievable hype – If it sounds too good to be true, it probably is.
- Words like revolutionary, miraculous, game-changing, never before seen, etc. should all be tip-offs that a higher level or scrutiny is warranted.
2. Information provided is clearly tied to selling a product.
Dr. Kluger will help his patients think through whether a supplement or other product would be beneficial in treating PD symptoms. He has no objection if someone wants to try an inexpensive, harmless dietary change, like adding coconut oil.
However, when someone wants to spend a substantial sum on an untested product, he is inclined to point out that the person selling the product is out to make a quick buck from people in a desperate situation.
- Books
- Supplements – there is no evidence behind nearly every supplement in treating PD
- Vitamin E – studied, but no evidence it is beneficial to PD symptoms
- Coenzyme Q10 – studied, but no evidence it is beneficial to PD symptoms
- Several animal models that didn’t advance to human studies
- Melatonin – useful for sleep in humans
3. All the information provided comes from a single website, single source, or single person.
One hallmark of good science is that the test results are replicable. Meaning, if I study a substance’s effectiveness, other researchers should be able to replicate my results.
- Example: A best-selling supplement for Alzheimer’s is Prevagen. Even though it claims to be evidence-based, there has only been one study done of Prevagen. That study was done by the people who own the company that makes the product. The study has never been replicated.
4. Unreliable experts.
- When someone refers to themselves as a medical expert, that is a tipoff that they probably aren’t.
- When people don’t have the right credentials for what they’re selling.
- Nutrition books written by PhDs or medical doctors with no knowledge of nutrition
- Linus Pauling, Nobel Prize in Chemistry and Nobel Peace Prize promoted very high doses of vitamin C with no science behind it. This brought discredit to his otherwise outstanding professional reputation.
Mel points out that it is very difficult for the average person to determine whether someone with an MD or PhD is correct in what they believe or say. We want to trust that doctors have an excellent education and integrity, but we should still research their background. There are MDs out there with a huge web presence selling supplements who still consider themselves to be respectable physicians with integrity, even though that is a huge conflict of interest.
Dr. Kluger pointed out that there are a bunch of doctors who call themselves functional doctors, even functional neurologists. A certificate in functional medicine is available to MDs, chiropractors, acupuncturists, dentists, nurse practitioners, and more. A functional medicine certificate program does not provide more medical training and is not evidence-based.
Sadly, Dr. Kluger said even when considering DBS there are areas of financial gain that drive medical recommendations. Along these lines, be wary if someone:
- Doesn’t want you to get a second opinion
- Doesn’t want you to look elsewhere for information
- Uses fear, uncertainty, and doubt as a tactic to get you to go along with their recommendations
- Tells you the treatment is too complicated to explain, or you would need an advanced degree to understand
Mel was talking with a doctor not too long ago who told her he and his colleagues are the only people with x information. After that statement she no longer trusted him about anything. He was obviously disrespecting her and trying to play off her emotions.
If his information was so revolutionary he would (or should) want to tell the world about it and help everybody, not hold onto the information as proprietary for his own personal gain. It is 99.999% a scam.
Dr. Kluger has also heard arguments along these lines, claiming the medical community doesn’t want to see Parkinson’s cured so they have to operate outside the US. That is totally a clue this person doesn’t have your best interest at heart but are looking out for their wallet.
Dr. Kluger has on a t-shirt that has a quote from Neil deGrasse Tyson, “To be scientifically literate is to empower yourself to know when someone else is full of sh*t.”
5. Unproven products or treatments
- Something that is good for everything is probably good for nothing
- PD is not caused by the same thing as Alzheimer’s or cancer so legitimate treatments will not be effective for all disorders
- Something claiming to be 100% safe
- If there are no side effects, there is probably no effect whatsoever
- Placebos have limited psychological effect, but not true effect
- Something that is unregulated
- This is true for the whole supplement market.
- Something that relies on anecdotal evidence or expert opinion
- Anecdotal evidence is a rumor that somebody, somewhere benefitted. Websites will have a lot of quotes, rather than study results.
- Experts who make endorsements often receive kickbacks from product sales. This is often true with NYC bestsellers where unqualified experts endorse books written by other unqualified experts.
- Mainstream media exaggerates study results. Headlines always espouse groundbreaking research but when you read the paper, study results turn out to be an association or incremental progress toward a treatment that is years from being available to patients.
Mel asked what it means when something is unregulated, and why is that important?
Dr. Kluger says to follow the money. In the early 1990s General Nutrition Centers (GNC), a retailer that makes and sells natural supplements, led a campaign to keep the FDA out of the regulation of supplements. It was successful so supplements are unregulated today. Unregulated supplements and cannabis products mean manufacturers, can print whatever they want on bottles, including:
- Unsubstantiated claims for what the product cures or does
- Missing, misleading, or incorrect contents and ingredients
- CBD and THC levels can vary markedly from product to product and dispensary to dispensary
The NY Attorney General did an investigation and found a lot of GNC products contained nothing but rice flour and sometimes house plants. So, no regulations mean you don’t know what is in your supplements.
Mel asked if supplements are unregulated people assume nothing bad can happen, but can something bad happen? What can consumers do?
Dr. Kluger replied:
- People will sometimes stop taking medications that work in favor of supplements
- Particularly supplements from India have been found to contain heavy metals and arsenic.
- ‘Natural supplements,’ often from China, have contained actual pharmaceuticals.
- Consumers thought they were buying an all-natural sexual enhancement and the pills were found to contain Viagra.
In cases like these pills, and cannabis:
- Have side effects
- Can interact with other medications
- Slow metabolism
- Ill effects of higher dose of CBD or THC in cannabis from a different brand or dispensary
Mel asked Dr. Kluger to explain more about the phases of research and how most studies never to human trials.
Dr. Kluger said when he got into neurology he was working in a nutrition lab. He hoped through nutrition people could take less medications. During that time a shocking animal study came out saying vitamin A may slow or prevent lung cancer. Another study showed people with high blood levels of vitamin A have a lower chance of contracting lung cancer. Further studies showed people with higher blood levels of vitamin A have a higher risk for lung cancer.
This taught Dr. Kluger that things you think may be safe may not be that safe and you don’t want to put your life on the line based on studies that were not well designed. There are a lot of ways things can be associated, but those associations are not always true. For example, you can make a correlation between eating ice cream and shark attacks because the incidences of both go up in the summer. In fact, they are not at all related.
In the initial assumption between vitamin A and lower rates of lung cancer, it may be that people with higher levels of vitamin A eat more vegetables and are less likely to smoke.
You can find something in the news headlines every day, even from reputable news outlets, implying research advances or a correlation between diet and Alzheimer’s, or whatever. This is because headlines sell newspapers, but you need to read the actual research paper to get the facts.
An attendee asked if DPF has published a list of supplements that have no effect or are harmful to people with Parkinson’s?
Mel replied that DPF does not post a list like that and does not endorse any supplements because there is no evidence any supplement is helpful to people with PD.
Another attendee commented that there is a difference between published research and a press release from the organization where the research was conducted. Universities do this to promote their researchers on staff to encourage donations to the university.
Dr. Kluger agrees. There is a big difference between press releases and what you will read in a professional journal.
About 10 years ago, when Dr. Kluger was at the Univ. of Colorado, he was interviewed about some research into the effects of microglia, which is an inflammatory cell in the brain. The journalist wanted his expert opinion about how that might be involved with Parkinson’s. He did his best to make the point that this was a limited study and, although it looks promising, it is in no way conclusive. The interviewer kept asking him questions until she had enough sound bites to edit a sensationalized version of the research results.
Mel says there’s nothing wrong to bring attention to researchers and funding for research, but to get the full story consumers must read the original research paper.
An attendee asked, why she should believe that what Dr. Kluger is any more valuable than other statements about supplements and treatments.
Dr. Kluger said, “You shouldn’t!” This is a point he makes in his blog and a book he’s working on. That is that we live in an ‘expertocracy,’ or a society where we are asked to trust experts. Pushback against that is not necessarily a bad thing, but you need to push back in the right way. If you don’t understand science, medical literature, or research you put yourself at risk to be victim of pseudo-experts.
You should definitely think about what everybody tells you, even Dr. Kluger. He is not putting himself out there as a new guru. His goal is to educate and inform and help people protect themselves so you are your own guru.
When people don’t trust anybody, only those in their Facebook group, or those well outside the mainstream establishment, they put themselves at risk as well. The best thing to do is to find some middle ground where you have conversations and engage your medical team when you have questions.
For example, if you are considering DBS the neurosurgeon’s opinion is your best source of information because he/she has experience with the different devices, where to implant the leads to treat specific symptoms, etc. But even experts are not infallible. You still need to ask questions, do your research, and find a neurosurgeon who will work with you for your best treatment and health care.
Clinicaltrials.gov has all the clinical trials listed from around the world. Unfortunately, there are organizations that have listed their ‘stem cell trials’ on clinicaltrials.gov. These are not legitimate studies. They will ask you to pay to be part of their study. You will never be asked to pay to be part of a legitimate research study.
Mel said about three years ago she and Dr. Kluger were at the same conference. She left that conference thinking she just heard 26 different opinions about whether CBD or THC is working for those with PD.
Dr. Kluger said the research on humans is very minimal. Most studies have been done on animals. Those studies show some ways in which cannabis may be helpful for Parkinson’s, including some evidence that it may be neuroprotective.
As he said before, there are a lot of things that have proven helpful in animal studies, including co enzyme Q10 and vitamin E that did not pan out in human trials.
There are several epidemiological studies asking people if they use cannabis for Parkinson’s, for what symptoms, and whether they found it helpful. These studies tend to be biased because respondents are likely to be those who have an interest in cannabis or who had a good effect. Those who aren’t interested, haven’t used cannabis, or had side effects will not fill out the survey.
There have been several randomized cannabis trials. They were inconclusive because they were too small or poorly designed. None showed a benefit of cannabis over placebo for either motor or nonmotor symptoms.
There have been studies showing cannabis may be helpful for those with Parkinson’s in treating pain and improving sleep. So, if Dr. Kluger has patients interested in trying cannabis he will write them a prescription. He recommends focusing on treating one symptom at a time with cannabis, starting with a low dose, using the same dispensary with certified organic products each time.
Anecdotally, patients have reported improvements in anxiety, sleep, appetite, and nausea. Some have reported smoothing of ON/OFF symptoms. You can also find some YouTube videos testifying to dramatic results BUT the science is not there. You have to try for yourself to see if it works for you.
Mel asked if there is anecdotal evidence that cannabis is harmful.
Dr. Kluger said there aren’t great studies but we know there are side effects:
- Worsen motivation (apathy)
- Lower blood pressure
- Contribute to falls
- Can cause nausea with heavy use
Low blood pressure and falls can impact cognition and Mel commented that if you have increased apathy from cannabis use you may not exercise. Exercise has been repeatedly shown in research to improve mobility, lessen both motor and nonmotor symptoms, and be neuroprotective.
You should always let your doctors know if you are using cannabis or taking supplements. Doctors can be quite puzzled as to why patients are having problems or not responding to treatment as expected. When they finally learn the person is using cannabis or taking supplements the diagnosis and treatment changes entirely.
If you don’t feel comfortable telling your doctor about using supplements or cannabis, you need to find another doctor. You should have open communication with your doctor and feel you can tell them anything.
When your doctor doesn’t have all the information about you they need they miss opportunities to provide education and safer guidance about supplements, cannabis, and more.
There is misunderstanding that Deep Brain Stimulation (DBS) will cure Parkinson’s or correct all symptoms. Please update listener information on that topic.
Dr. Kluger replied that there are only two truly groundbreaking treatments for Parkinson’s. One is carbidopa/levodopa (Sinemet). Watch the movie “Awakenings” to see the impact that had on those with PD. Every other pharmacological treatment we have today is still based on that discovery
The other is DBS. In DBS neurosurgeons place a stimulator in part of the brain called the basal ganglia, which we know is affected by PD. By doing that and providing electrical stimulation and affect that circuit to affect the motor symptoms of PD.
DBS will not cure PD or eliminate symptoms. It wasn’t designed to do that. It can help with tremor, dyskinesia, slowness, and stiffness as much as your medications will. It may increase ON time and decrease OFF time.
It may worsen cognition and memory. If your gait and balance are not better with medications DBS is unlikely to make them better.
Dr. Kluger published a study with Michael Okun that showed when people are unhappy with DBS the number one reason is because they got the surgery for the wrong reason. They got the surgery expecting it would help things DBS is not meant to help.
Mel said there are neurosurgeons who will do DBS on people for the wrong reasons. Dr. Kluger replied that is not the fault of patients. In an ideal setting, someone seeking DBS will be evaluated by a team. That assessment includes:
- Checking your thinking and memory
- An evaluation by a psychiatrist because DBS can sometimes affect mood
- An exam by a movement disorder specialist with expertise in Parkinson’s
- A visit with a DBS neurosurgeon
If DBS was recommended to you from a single individual, it could be because that person could be getting kickbacks from a medical device representative. That is much less likely to happen with the team evaluation approach or by getting a second opinion. There have been cases where someone seeking DBS was determined by the evaluation team to not even have Parkinson’s.
Another bit of misinformation about DBS is that you should delay having the procedure done because the effects will wear off. Please explain how that really works.
Dr. Kluger said that some patients and doctors are eager to do DBS as early as possible. As we just said, DBS isn’t for everybody because it doesn’t solve all PD problems.
The flip side of that is that waiting too long to do DBS may put you outside of the window in which you can have DBS. As PD progresses oftentimes people develop problems with thinking and memory. Thinking and memory problems increase the risk of adverse outcomes from DBS surgery. So, there’s a window where DBS is going to be safe and effective. If you wait too long you could miss that window.
Similarly, for a long time there was the thinking that you should avoid taking medications for as long as possible because the effects wear off. What actually is happening is that as PD progresses, the medications are less effective.
DPF has been great at educating folks to understand that you want to be as independent and active as possible. If medications help you to do that, you don’t want to tough it out and delay medications. There are studies showing that delaying medications is not great for People with PD.
Some people believe there is an ideal diet for Parkinson’s. Is that true?
Dr. Kluger mentioned the book, Grain Brain. There is not good science behind it. In fact, if we go down the list of the bullsh*t detector this book ticks a lot of the boxes.
1. The expert does not have a background in nutrition
2. There are a lot of unbelievable claims, like avoiding grains will cure PD
There are a host of diets (keto, gluten free, etc.) that claim to help with PD. To date, there are no studies that support any diet helping with PD.
What is important in diet for those with PD is:
- Fiber to help with constipation
- Stay hydrated to maintain blood pressure and avoid fainting
- Maintain a healthy weight
- Particularly in advanced PD, weight loss can be a big issue
- Heart healthy diet – what’s good for your heart is good for your blood vessels and your brain
- High protein diet (recommended by Grain Brain) can:
- interfere with absorption of levodopa
- make constipation worse
An attendee mentioned Thiamin (vitamin B1). Dr. Kluger said there’s no evidence for B1 in Parkinson’s. People should be cautious about vitamin B6, which is in a lot of vitamin supplements, is a vitamin you can overdose on. Ironically, if your B6 level is too low it can cause neuropathy, but if it’s too high it can also cause neuropathy. He has seen people who had nerve damage from taking too much B6.
An attendee said someone told them if they meditated hard enough it would cure PD. Mel said, if that were true nobody would have PD, and if there was a cure DPF would be shouting it from the rooftops.
Mel mentioned that one of the huge benefits of joining a support group and being part of the PD community gives you so many people to talk to about treatments you may want to try.
If you are interested in DBS you can get a referral to a great neurosurgeon. If you hear about a treatment that sounds too good to be true you can have a conversation about it with others and do a gut check.
There is the misunderstanding that only if someone exercises at very high intensity with they see any benefits.
Dr. Kluger said good studies of Tai Chi, exercise bikes, progressive strength training, and treadmills all show potential to show progression of both PD and Alzheimer’s. What we don’t know is what the optimal dose of exercise is.
Evidence suggests that there is benefit from exercising at fairly low levels 3-4 times a week. It seems like more rigorous exercise is better so you do want to push yourself – not to the point of injury or discomfort, but so that you’re progressing in some way.
The flip side of that is people with PD have injured themselves and made their fatigue worse because of exercise. There are interesting discussions in the world of geriatrics distinguishing between exercise and activity because sometimes people do themselves a disservice because they exercise really hard for half hour, then they’re on the couch the rest of the day because they can’t move. Encouraging people to think about their global activity level can be better for the body.
Mel added that you also don’t want to exercise so hard you hurt yourself. If you are injured, not only do you not get the benefit of exercise while you heal. You are also unable to perform activities of daily living. Those are the things that keep you independent.
Just like you want to push yourself a little bit in exercise, you also want to push yourself in activities of daily living.
There is the idea of learned nonuse. If you always have your care partner do something for you so you’re not doing it, you learn to not do it. Then, you lose that skill.
Dr. Kluger said related to that is memory. Similar to exercise, there is no one cognitive task that is best to maintain cognition and memory. It is about staying active. Do whatever puzzles and games you enjoy. Listen to or play music, learn a new language, socialize, etc. Mix it up!
Dr. Kluger created a medical bullsh*t detector for the Resource section at the back of the DPF Every Victory Counts manual. Order your paper or digital copy of the Every Victory Counts manual at:
Dr. Kluger also has a two-part Medical Bullsh*t Detector blog post, which his family and friends said help them see bullsh*t where they didn’t see it before.
Part I – Untrustworthy Products and Unbelievable Ideas
Part II – Unreliable Experts