Dr Davis of Stanford university the direct OMF has launch a new research study of CFS,the initial funding for the study is 5 million dollars,they plan to verify the university of California's research published August 30,the goal is to verify and come up with a diagnostic test for ME and CS
That's interesting!
Dr. Davis is a highly respected researcher whose son, Whitney, is severely ill with ME/CFS. Dr. Davis is therefore highly motivated to find a cure for this illness.
Hooray! Now let's hope it leads to something substantial.
Thanks for posting this. It gives me more hope since the doctor is so motivated. I am sorry his son is ill, but perhaps something good will come from it, and that will earn him the gratitude of many, many people.
Thank you for the information. Have you looked into getting in this study? Or is it one where one needs to travel to Stanford? Whatever the situtation I hope that the research will benefit the numerous people with MS/CFS. Again thanks for sharing the information.
Phillis--Have you seen the movie, "Forgotten Plague?" It's a documentary on ME/CFS and has a segment about Dr. Davis and his son, Whitney. It's an excellent film, but the segment on Whitney is heartbreaking.
Hi Patrickgeoffrey,
To clarify, is this to find a diagnostic tool or is it to seek a cure as from the responses it looks like others see it as cure and may have more Info than your initial post?
Beverley
I haven't even heard of it, Jackie. I'll check it out on Amazon and see if I can rent a copy. Thanks for the info.
To think, this is happening in my hometown of San Diego and I knew nothing of it.
The study appears to have taken place in San Diego at UCSD. See the article I posted below ...
It already has, so it would appear. Read the article I posted below ...
I posted an article of the study below, check it out ...
Thank you so much for posting this!
No worries, glad to do it.
Thanks for bringing this to our attention Patrick!
Hi there everyone,
on this side of the water, the group meaction has just emailed me to say the PACE trials are finally releasing the data they collected due to a tribunal decision. Please look online if interested.
Seems we're being heard.
Also, thanks dono. I always felt it was a protective device by the body when put under an enormous pressure of physical, emotional, psychological, biological proportion. This study backs that up
Beverley
Thanks for posting, Beverley. I'm totally confused as to how any supposedly scientific data, like the PACE statistics, could be blocked from being released. The very basics of any scientific information or protocol is that it should be peer reviewed and replicated. Without that, it is simply garbage. Also, it is very suspect that they've been blocking the release of the statistics for, I believe, 5 years! With all of this, how can the NHS possibly go ahead and continue recommending Graded Exercise Therapy (GET) and Cognitive Behavioral Therapy (CBT)? Especially since so many people, myself included, have been made worse by GET? This is a total mystery to me. I wonder if I'm missing something here.
Hi Jackie,
It seems a shambles since the pace trials started. At the real heart of all this is the need to save money. Before my condition started, I worked in mental health and worked alongside cbt practitioners. The Nhs followed NICE guidelines and cbt was the main therapy used. However, I was not a cbt practitioner and my "results" were no different to those who were. I strongly believe that what does help is being truly heard, acknowledged and prized for who we are and not judged for our short comings. Cbt is a useful therapy. But not for all. At the cfs/me clinic I attend, I have a specialist nurse who I feel "gets" me. Yes, it's time limited and uses Cbt techniques but, also looks at relaxation, mindfulness and our personality traits. No GET. Pacing is advocated. Looking at sleep and activity levels investigated and solutions offered. I know I've had a much better experience than some with the service. My friend with cfs/me actually put In a complaint about how she was treated (had telephone sessions after her specialist nurse went on long term sick, new one sent report to the doctor with inconsistancies and ridiculously kept saying they were tired too! What a lack of empathy and understanding of the condition)
With regard the pace trials, the original protocols were changed which showed 61% improved whereas the original showed only 21% were improvers. Shocking disparities in the data and like you many people, made worse as a result of this. If you look on the #meaction release about the pace trials yesterday, there is alot of information regarding the data.
Hopefully some good will now come from all of this.
Beverley
Actually the research is very advanced,they describe what the disease is and the biological markers that will lead too a cubistic test,basically the cells have gone into a protective hibernation state,they also list the triggers,tge triggers can be different but it is one disease,there is a long list of viruses and bacterial infections that are the triggers,it is an auto immune reaction to an infection