Myalgic Encephalomyelitis & Chronic Fatigue Syndrome
We ask that all new members complete a preliminary survey when they first register. The instrument we use for the ME/CFS community is the DePaul Symptom Questionnaire developed by Dr. Leonard Jason. Below are a few basic results as a proof of concept. The data we collect online is nearly identical to data collected in a lab or clinic. The DSQ also allows us to see other things like what people have tried in terms of treatments and will be extremely valuable to 'help' analyses of other studies. Complete the Survey.
Preliminary ME/CFS Survey
There are many studies with results in this community. You can select one from the Page Menu (left) or scroll down.
Core Symptom Severity
The preliminary questionnaire you filled out assesses 8 core symptoms of ME/CFS allowing classification according to the Fukada (CFS) or revised Canadian criteria (ME/CFS). Note how close the Mendus group average is to the large sample (242 people) of confirmed ME/CFS cases (from SolveCFS), Type your ID in the box to see your results. The SolveCFS data were taken from a study by Dr. Leonard Jason.
Gender, Diagnosis, Perceived Cause and Commonly Tried Treatments
Most respondants are women, who have diagnosed with ME/CFS by a medical professional and who believe the cause of their illness is 'definitely physical'. You can also see the most common things people have reported trying to combat their symptoms. Hovering over the graphs will reveal the names more clearly. These results continually update as member submit data.
The MitoQ study has been our largest study to date, by far. This is undoubtedly due to the notoriety of the person who proposed and advertised it (Cort Johnson) and the proprietor (MitoQ Limited) who supplied 50 ME/CFS and 50 FM patients with their product for free. We managed to pull off a two-disorder, randomized, double-blind, placebo-controlled, crossover trial with another ~50 people joining an open-label condition. Group results will appear here soon pending publication. More info about the study.
The D-Ribose study was suggested by a member who wanted to know if the supplement would work for him/her as previous research suggests. The 3-week study tracks participants' symptoms on daily D-Ribose. Consistent with previous studies we're finding increases in energy. We're also seeing a small reduction in pain as well as improvement on working memory task. Note: we have yet to implement a reliable placebo condition for this study. Though one person made their own! More info about the study.
Several additional measurements which we added to the protocol will be added here in the near future.
I thought more people would be interested in the dark chocolate study but only 1 brave individual has made it through the protocol so far. Consistent with a small study from 2010 she had increases in energy after eating dark chocolate daily for 8 weeks. It is thought that the antioxidant properties of the cacao may be what underlies this effect. She also seemed to be more active but statistics cannot be computed with a single person with 4 data points. More info about the study.
Dark Chocolate Study
The Coenzyme Q10 study was launched around the same time as the MitoQ study. We hoped it would be popular and allow a comparison with MitoQ. Only a few people have completed it at this point. The results are in the process of being prepared. More info about the study.
The Whey Protein study is investigating the possibility that glutathione production may be increased by eating whey protein. This may help ME/CFS and/or FM because glutathione is a powerful antioxidant. In this study whey protein is consumed daily for 6 weeks. We measure symptoms and cognition 5x over that period. More info about the study.
The Diet Study was our very first project and grew out of my own efforts to better my symptoms through changes in diet. We use a popular diet tracking app and symptom ratings as frequently as possible to look for patterns. We hope to expand this study in the near future to test the effect of specific diet types (e.g. the paleo-diet or ketogenic-diet). Currently we track what we 'normally' eat. More info about the study.
There is a vast amount of data generated in this study and there are many results which could be displayed. Here I provide just a few which stand out (at the group level) and may be important. Click here to see a more complete set of results looking at the relationships between nutrients we're tracking and any symptoms follow the links below. The group average is displayed by default. Enter your ID to get your personal results.