ME/CFS Community Profile Page

Jenny

Senior Member
Messages
1,386
Likes
552
Location
Dorset
JT - I can't see a CFS or ME questionnaire. This site is really weird - I really don't understand it. Why when you do the questionnaire on Lyme does it ask you about crop circles or whether you argue with your partner?!

Jenny
 

JT1024

Senior Member
Messages
582
Likes
411
Location
Massachusetts
I didn't see the CFS/ME questionnaire either. I queried all questions and only found ONE asking if you had been diagnosed with CFS.

This site allows anyone to create questions. I agree a lot of the questions are bizarre but you can skip whatever you don't want to answer. I did!

Perhaps a bunch of us should create CFS/ME specific questions and create a questionnaire. I think you can do it for free.....

Got to run! I'll be investigating further when I can... ~ JT
 

JT1024

Senior Member
Messages
582
Likes
411
Location
Massachusetts
Last night (early this morning), I was playing around on the www.patientslikeme.com website to view other communities, what data they capture, etc.

I was shocked when I saw the HIV community for several reasons. While there are 2312 patients registered for the HIV community, only 386 allow their information to be viewed publicly (I don't blame anyone!).

You are able to sort patients in many ways and one thing I found out was how many subtypes have been identified. There are so many subtypes identified and HIV came on the scene about the same time as CFS....it is really frustrating. Also, they capture CD4 counts and viral load. Some of the other diseases represented capture far more data than the FM/CFS community.

I think displaying the stats on CFS/ME versus HIV and other well know diseases might grab more attention.

I want to post more but have run out of time... more later...
 

Cort

Phoenix Rising Founder
Messages
7,361
Likes
2,061
Location
Arizona in winter & W. North America otherwise
I agree Traitwise is very interesting. That's great you can do your own surveys - something we should definitely take advantage of.

Here's another site that I have trouble getting into - its another online patient information effort - drilling down into one disease called -
LAM. https://www.lamsight.org/about

It espouses the benefits to researchers and patients of being able to access patient supplied data.

I imagine these types of sites are going to be popping up over the internet over the next couple of years.
 

Cort

Phoenix Rising Founder
Messages
7,361
Likes
2,061
Location
Arizona in winter & W. North America otherwise
We can really use more examples of system where patients are inputting information for research purposes or to find better treatments. If anyone has time to search diseases that would be great.

Medigenesis is an autism project that is not completed yet. They did have a Biomedical Data Survey - medigenesis expands on that.

Medigenesis - (autism) http://www.medigenesis.com/ - ARI’s Biomedical Survey Analysis is based on a simple exemplar-match model. The program searches the database and finds other individuals who responded the same way to several specific treatments. One of its shortcomings is that the program does not take into account the person’s symptoms or other characteristics, such as age and sex. Medigenesis.com is a similar project but it is much more powerful. Its revolutionary algorithms are based on overall similarity of symptoms, features, and treatment responsiveness. Sidney Baker, M.D., with the support of ARI, developed Medigenesis. Dr. Baker is the co-founder of ARI’s Defeat Autism Now! (DAN!) project; he has written many books including ARI’s publication Autism: Effective Biomedical Treatments (co-written with Dr. Jon Pangborn); and he is one of the leading clinicians in the field of autism. Dr. Rimland was very excited about Dr. Baker’s Medigenesis project, and several years ago he wrote an editorial about this project. We encourage you to learn more about Medigenesis at Medigenesis.com.
 

Cort

Phoenix Rising Founder
Messages
7,361
Likes
2,061
Location
Arizona in winter & W. North America otherwise
I think we'll find them in diseases that effect a good number of people but are poorly understood? Where patient input is needed t obetter understand the disease...or in small diseases that aren't getting a lot of research and could use patient information to fill in the gaps

Or in diseases with a long history of advocacy

AID Health Tracker - https://secure.thebody.com/tracker/intro.html