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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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PatientsLikeMe (www.patientslikeme.com)


Senior Member
Hi Samuel

I agree about the need for clustering. The people who run peoplelikeme could do this with all the data they already have using statistical techniques like cluster analysis and factor analysis. They could also do a whole load of other things with the data, for example, correlating length of time ill with severity, gender differences in symptoms, age of onset with severity etc.(and of course linking treatments to symptoms). But as I said before, the large majority of patients on this site have FM and not necessarily ME. It seems to be me that FM is an even more heterogeneous illlness than ME (but of course that's where clustering would help).

It would be great if we could do some form of cluster analysis with the data from your/our questionnaire - we would need a good sample size though.

I find the site useful in looking at the links between treatments and improvement (or lack of it) on specific symptoms. For some treatments (particularly anti-depressants and the traditional FM drugs) there are hundreds of patients. Of course a lot of the time there seems to be no link, but some things do seem to have an impact on certain symptoms, and it that's one of your main problems it's helpful to see what helps others.

I'm also using it to give me a detailed record of what I'm doing and how I'm feeling over time.