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OMF Severely Ill Big Data Collection Completed

Never Give Up

Collecting improvements, until there's a cure.
Messages
971
Woohoooo! Now on to the analysis!

OMF is excited to announce that sample collection has been COMPLETED for the ME/CFS Severely Ill Big Data Study. The completion of sample collection means we now have the most multi-faceted and down-reaching data ever gathered to analyze and test in our search for a cure. We are also tremendously grateful to the patients that gave of themselves to make a big personal sacrifice for the pursuit of groundbreaking science.



ME/CFS Severely ill Big Data Study
The Open Medicine Foundation - Nonprofit fundraising and support for a cure for Neuro-Immune Disease, Chronic Fatigue Syndrome, ME, Lyme Disease, Fibromyalgia and engages patients in research.
OPENMEDICINEFOUNDATION.ORG
 

Gijs

Senior Member
Messages
690
These results will be representative for a very select group of CFS patiënts (20%) certainly not for the most of them and all those 'millions and millions' of American fatique patiënts. But nevertheless very interesting.
 

Marky90

Science breeds knowledge, opinion breeds ignorance
Messages
1,253
These results will be representative for a very select group of CFS patiënts (20%) certainly not for the most of them and all those 'millions and millions' of American fatique patiënts. But nevertheless very interesting.

Oh Gijs :p Always positive!

This is why they`re doing phase 2 on mild and moderate patients:D!
 

Marky90

Science breeds knowledge, opinion breeds ignorance
Messages
1,253
I seem to remember reading that this was their intention. But, as usual, I have no idea where.

Yes, at least they said they would post their major findings as they occur. But the raw data would be extremely valuable to have available, cause there is a lot of researchers just conducting research that has already been.. researched
 

Comet

I'm Not Imaginary
Messages
692

Gingergrrl

Senior Member
Messages
16,171
Hey, making me stalk you again,, eh? ;)

Hmmm... stalking across threads... this is a new technique.... but it was effective and I will vote right now LOL. And for the topic at hand, am very glad that the data will be shared and this really puts the "Open" in OMF!
 

Ben H

OMF Volunteer Correspondent
Messages
1,131
Location
U.K.
http://www.openmedicinefoundation.o...ely-Ill-Big-Data-Study-revised-12-11-2015.pdf
Last paragraph of pg 6:
"Also, because the data will be in the public domain,other investigators can explore other analysis and uses without the expense of doing additional experimentation." :thumbsup:

ETA: Sorry, Ben Howell, I should have checked around for the answer before I tagged/pestered you.
Edit #2: Forget to tag @Marky90. So brain dead today...

No worries @Comet ! Thanks for posting the excerpt :thumbsup:

Its been part of the vision from the onset, the data being in the public domain so that other investigators have access.

There are no ego's here (despite the RIDONKULUS talent) , just the determination to get an understanding and treatment(s) as quickly as possible.

They are making fantastic progress! If you havn't already I suggest signing up to the newsletter here to be kept up to date (this was recently reported in the newsletter):

http://www.openmedicinefoundation.org/newsletter-sign-up/

(Many of you im sure are already!).

For those that missed Ron Davis's bday thread, we managed to raise $16000 in honor of him. Thats not including the regular monthly donations that OMF receive!

When the current testing of the severely ill patient study is done and the results are analyzed, then we will know what biomarkers to test for in moderately ill patients. @Gijs (hopefully that is reassuring!).

Its all going on :)

B
 
Last edited:

K22

Messages
92
These results will be representative for a very select group of CFS patiënts (20%) certainly not for the most of them and all those 'millions and millions' of American fatique patiënts. But nevertheless very interesting.


The OMF believe that the severe have the strongest signals , not a separate illness. I am severe and it feels the same as a flare up when mild - moderate just 10 xs or much more worse impact so I think there is relevance to the other 75%, especially regarding the depth and breadth of the study. Ofcourse factors such as level of incapacitation might affect some things.

If there are results of many magnitude from normal this will provide striking "news" and get ME taken more seriously which will benefit all. If we go the other way round and do cognitive testing for example in the mildly Ill we just get reports of some difficulty with the speed of processing information, which doesn't move mountains.

I agree, I don't think it Will have much relevance for the many more living with chronic fatigue but they are far less my concern than those surviving with chronic illness.

From a severe ME perspective Thank goodness for OMF severe ME research, at last something for us.