“Complex” is a word that is frequently used to describe the myalgic encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) disease state. Here are some of the reasons why:
- Many body systems are affected
- People are sick for varying lengths of time
- Symptom type and severity vary from person to person
- A variety of medications are used to treat symptoms
- The environment that ME/CFS patients live in varies, and that can affect their health
- Many people experience other “overlapping” conditions in addition to ME/CFS
ME/CFS is a diagnosis of exclusion, meaning a process of elimination. A physician must first discern whether a patient has any other overlapping conditions that present in a similar way as ME/CFS, to either eliminate it as a possibility or understand that it is only one piece of the medical puzzle, because the patient has more than one medical condition (which is often the case.)
- Chronic infection with Epstein Barr virus, hepatitis C virus or human immunodeficiency virus has a similar clinical profile to ME/CFS.
- Endocrine diseases like diabetes and thyroid disease share symptoms and features with ME/CFS.
- Autoimmune diseases like Sjögren’s syndrome, PANDAS and celiac disease present with many of the symptoms experienced by ME/CFS patients.
As we gather data about the symptoms and genetics of ME/CFS, we can increase our knowledge by putting them in the context of these other “medically explained” diseases. When we take this more holistic view, we can begin to explain what is going on in ME/CFS.
One way that research deals with this type of complexity is to break it down so that the most similar people are being studied. The code of our genes can be used to group people that are similar. The genetic similarities can relate to any number of body functions including things like metabolism, immune function or endocrine function and even the types of symptoms that patients experience. Once this complexity is broken down, people with a complex disease like ME/CFS can be grouped based on a more specific genetic profile. Genetic information is helpful to delineate the complexity of ME/CFS and it may also be useful for helping us understand the disease process.
Pharmaceutical companies understand that breaking down this complexity and facilitating studies with the most consistent groups is important to showing maximum efficacy. A study done by the Tufts Center for the Study of Drug Development in 2010 indicated that 100% of pharmaceutical companies surveyed were using genetic technologies to target specific groups of patients and understand how patients will react to specific treatments.
The SolveCFS BioBank is an important part of this research progress. We simplify the process for investigators by creating a ‘bank’ of research-ready patients and healthy controls where important data that helps group similar patients together has already been collected. As we expand the efficacy and efficiency of the SolveCFS BioBank and Registry, we continue to enhance systems that allow us to use patient data to break down the complexity of ME/CFS and move discovery forward at a more rapid pace. When you participate in our BioBank, just having your name on the roster while you wait to be called to offer a sample, makes you a critical component in our efforts to solve ME/CFS.
Learn more about our Solve CFS BioBank in this earlier 4 part blog series: