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Do you suffer from undiagnosed muscle weakness and/or pain? Do you have Chronic Fatigue Syndrome (CFS) or Myalgic Encephalomyelitis (ME)? This site describes a data-gathering project that will help researchers better understand CFS/ME and conduct studies.

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About this project

Image courtesy Dr. Peter Dobie

My name’s Zachary Elwood, and I came down with sudden-onset CFS symptoms in mid-2015, at the age of 37. Immediately prior to that, I’d been in the best physical and mental shape of my life. You can read more about my experience here.

As I learned more about these conditions, I became motivated to help the CFS cause in some way. After reading a lot about the disease, its history and the current research being done on it, I had the idea to create a website/application that would act to collect a wide range of data about CFS/ME sufferers, with the goal of helping researchers and sufferers. I've talked to three prominent CFS/ME researchers about the idea and they agreed that it was a theoretically helpful one. I’ll be starting work on this project sometime within the next year (probably mid to late 2018). If you keep scrolling down to the section below, you can see some potential benefits such a project would have. 

I’ll be adding blog posts here, where I share interesting CFS/ME news or information I learn in the process of working on this project. Currently, I’ve got a transcript of an interview I did with Dr. Nancy Klimas, a respected researcher in the CFS/ME field.

Planned Application Features

+ Collect a wide variety of case history details and symptom data
+ Allow members to contact others with similar symptoms and/or who are in the same region
+ Share news/information with members

Potential Benefits

+ Allow CFS/ME researchers to potentially find previously unknown patterns and symptom set categories in large population
+ Give CFS/ME researchers access to a well-defined population who may be willing to be part of CFS studies
+ Allow sufferers (if they want) to talk to others with similar symptom sets and share ideas, treatments, and moral support

Contact me

Want to know more about the project? Have ideas for the project?

Sign up and you'll get an email, then you can send me back an email. Or fill out the Contact form