For the live-updated, interactive version of this infographic, click here.
Chronic Fatigue Syndrome is a puzzle. People with CFS live with incapacitating exhaustion, as well as a host of other unpleasant symptoms, and they often don’t know what to do to feel better.
But I didn’t realize how much of a puzzle CFS really was until I saw this data (in the infographic above). It is such a poorly understood condition that the treatments reported to help most are predominantly lifestyle changes, while the medical treatments are predominantly reported to produce negative effects. This would suggest that medicine today doesn’t know how to effectively treat CFS.
Here at CureTogether, 1,319 people have reported having Chronic Fatigue Syndrome, and 6,524 data points have been shared about symptoms experienced and treatments tried.
So what really helps patients with CFS? Rest, dietary changes, and meditation take top spots in patient reports.
To navigate the graph above:
The top right quadrant shows the most popular and effective treatments, and the top left quadrant shows treatments that not many people have tried but that have above-average effectiveness, so they may be options to think about (e.g. Low-Dose Naltrexone, Far Infrared Heat).
Treatments in the lower right quadrant are ones that lots of people have tried but that have below-average effectiveness or, in the red section, actually make things worse (e.g. caffeine, alcohol), and treatments in the lower left quadrant are reported as neither popular nor effective, so you may want to steer clear (e.g. Paxil, Zoloft).
Interesting note: The one lifestyle change that doesn’t seem to help is exercise, which is an anomaly worth further investigation. There is much more to be said about CFS and response to exercise – my co-founder Daniel Reda will discuss this in a future post.
Where did this data come from? CureTogether members have been anonymously sharing symptoms and treatments for over 2 1/2 years now. We analyzed and visualized the data into infographic form to make it more accessible. To thank everyone for their contributions, we’re releasing this result back to the community for free.
This is the eleventh in a series of infographics we’ve been publishing over the past few months. Of course, with each of these infographics, there is inherent bias in patient self-selection and recall. Every research study has some bias, so we present these findings as just what they are – patient-reported data – to stimulate discussion and generate new insights for further research. Stay tuned for more and please let us know in the comments below if this was helpful or interesting for you – or write to me at firstname.lastname@example.org.
Please tweet, blog, or pass this along to anyone who can benefit or is interested in CFS. Thank you!