I became fascinated with scientific research after receiving my diagnosis. As a self-proclaimed "science-person," I wanted to learn as much about my condition as possible; I read dozens of published studies that went into detail about the molecular basis and potential treatments for Mast Cell Activation Syndrome (my main invisible illness). This truly sparked my passion for hands-on research, and I began this journey when I participated in the Human Oncology and Pathogenesis Program for high school students at Memorial Sloan Kettering 4 years ago. My university has announced that the fall semester will be conducted remotely, so I find myself fortunate enough to be able to return to Dr. Andrea Schietinger's lab at MSK while I take my courses from home.
MSK is known for its world-renowned cancer treatment and research and I am honored to play a role in one of their cancer immunology labs yet again. I feel most at home in the lab environment, and my invisible illnesses have continually motivated me to contribute to research efforts. I believe that scientific research is integral to the amelioration of all invisible illness treatments. From the perspective of a researcher, there is tremendous knowledge to be gained by reading different publications because it is an ever-evolving field. As a patient, I find it critical to arrive at appointments informed and prepared with questions so that we can receive the best and most advanced care possible.
Thus, I wanted to share 7 new research stories to follow for a variety of invisible illnesses:
1. Gastroparesis
Although it is not always clear what causes gastroparesis, in many cases it is believed to be caused by damage to the vagus nerve, which is the nerve that controls the stomach muscles among many others. It is the longest cranial nerve, running from the brain stem to the colon, and as such it controls both sensory and motor functions throughout the body. Currently, vagus nerve stimulation is FDA approved to treat epilepsy, migraines/cluster headaches, and depression, and now it is being studied in patients with gastroparesis. A small pilot study revealed that a hand-held vagus nerve stimulator provides short-term relief of symptoms and accelerates gastric emptying in patients with gastroparesis. A longer duration of vagal nerve stimulation was also associated with greater symptomatic improvement, suggesting that long-term use could be beneficial. This specific non-invasive stimulator is approved for patients with migraines or cluster headaches, whereas surgically implanted vagus nerve stimulators are approved for patients with epilepsy and depression.
2. Psoriasis
New information has emerged suggesting that dietary components themselves, rather than obesity, should be considered as a risk factor for developing psoriasis. A "Western diet," which is characterized by a high intake of saturated fats and sucrose and a low intake of fiber, is able to induce psoriasis even before significant weight gain occurs. The researchers from UC Davis Health utilized a mouse model to demonstrate that a high fat and high sugar diet induce observable skin inflammation within four weeks, revealing that an unhealthy diet can significantly affect your skin immunity. Bile acids produced from cholesterol in the liver follow this kind of diet were identified as key signaling molecules in the regulation of skin immunity, and the drug cholestyramine that is traditionally used to lower cholesterol levels helped reduce the risk of skin inflammation. It is now believed that these bile acids are responsible for mediating the development of psoriasis, but more research must be conducted.
3. Multiple Sclerosis
MS is an autoimmune disease, meaning that the immune system attacks healthy cells within the body. In this case, the body attacks proteins in myelin, the fatty insulation-like tissue that is wrapped around nerves, and the nerves eventually lose control over muscles. A research team from the University of Birmingham are studying a way to "re-train" T cells (a type of white blood cell) so that they stop attacking the myelin. They propose that they can mimic the process whereby the immune system learns to distinguish between self and foreign proteins by repeatedly injected doses of a fragment of the myelin protein. It works similarly to the immunotherapy used to desensitize people against allergies; as a result, the T cells that recognized the protein after injection transitioned from attacking the proteins to protecting the body. The immune system was able to maintain this programming because genes that tend to enhance the immune response were silenced, preventing unnecessary attacks of self-proteins. Understanding the mechanism behind engineering T cell tolerance is important not only for MS, but for every autoimmune disease.
4. Ehlers Danlos Syndrome
HEDGE, standing for the Hypermobile Ehlers Danlos Genetic Evaluation, was launched the Ehlers Danlos Society in 2018 as a worldwide collaborative effort devoted to finding the underlying genetic markers for hypermobile EDS. There are 14 characterized subtypes of EDS, but only the hypermobile type does not yet have identified genetic markers. The HEDGE study continues to recruit, screen, and perform genetic sequencing on individuals diagnosed with hEDS. Understanding the genetic causes of hEDS is crucial for accurately diagnosing patients and can be utilized for developing new therapeutic strategies to treat this disorder.
5. Diabetes
Insulin is a hormone produced by beta cells in the pancreas that regulates the metabolism of nutrients and promotes the absorption of glucose from the blood into liver, fat, and skeletal muscle cells. In patients with type 2 diabetes, beta cells stop functioning properly and cannot secrete enough insulin to maintain blood glucose levels, so patients often have to inject insulin to stabilize their blood sugar levels. A study conducted by researchers at Weill Cornell Medicine and New York-Presbyterian found that the protein adipsin, which is produced in body fat, can help protect the beta cells, thereby preserving insulin production. Scientists used a mouse model to demonstrate that increased adipsin levels had a positive effect on diabetes management long-term. This is significant because there are currently no treatments available that prevent beta cell loss.
6. Lyme Disease
Lyme disease is routinely treated with standard antibiotics, but up to 20% of people that are infected with the bacteria are resistant to the antibiotics. This causes chronic Lyme Disease, and symptoms include muscle pain, fatigue, and cognitive impairment among others that can continue for years and leave permanent effects on many organ systems. Dr. Venkata Pothineni and Dr. Jayakumar Rajadas from Stanford Medicine lead a study of Borrelia burgdorferi, the disease-causing bacteria, and were able to identify the drug azlocillin as a treatment that can completely kill off the bacteria at the onset of illness. The researchers also demonstrated that azlocillin was effective in killing drug-tolerant forms of the bacteria, suggesting that it may work as a therapy for lingering symptoms of Lyme Disease. In their study, azlocillin was screened from almost 8,000 chemical compounds and also seemed to cause fewer side effects in the mouse model. The researchers have patented the compound for the treatment of Lyme Disease and plan to conduct a clinical trial.
7. Depression
Major depression affects about 7% of adults in the US, but symptoms vary from person to person. There are several treatments that are available for patients with depression, but determining which treatment works best for a specific person is typically a matter of trial and error. However, scientists recently built an advanced predictive model that uses components of brain activity detected by EEG to reliably predict individual patient responses to sertraline, a commonly prescribed antidepressant medication. Alpha waves, the brain signal recorded by EEG when patients have their eyes open, were the main factor utilized to predict the sertraline response. SELSER, the machine-learning algorithm, actually outperformed conventional models and it is likely that it will extend to broader clinical purposes. These findings are exciting because EEGs are low-cost, accessible test, making the SELSER transition from bench to bedside a great possibility in the short-term. Currently, researchers are attempting to replicate these optimistic results in large, independent samples to fully understand the value of SELSER as a diagnostic tool.
I hope you enjoyed learning about these new research projects for 7 different invisible illnesses. It is incumbent upon us as patients and loved ones to continue educating ourselves about new research in the field so that we can be better advocates for ourselves and others. The NIH alone invests about $41.7 billion annually in medical research for the American people. This is only a small fraction of research funding, yet it speaks to the tremendous value of research in advancing our care.
Stay tuned for another roundup of research stories for a variety of invisible illnesses soon!
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