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Laura Hillenbrand: Leaving frailty behind
This great news and I happy for her but as a patient community disclosing what works and does not work leaves questions unaswered to ask their Drs and caregivers.
I see people sharing lots of info and a lot of info is out their but protocols seem to be unavavailble. Symptoms not described etc.
I know this seems like a lot to ask of a person but transparency on many levels symptoms, tests, drugs user wood help people get access while meager results and limited funding keeps us hidden from public eye and with virtually no fubding for the disease burden.
I just cant say enough.....we need help and exposure and transparency....
I never read the full post so if this has been discussed great. If not I am waiting for the over 20 ME Organzaitions in North America to get on the same page and figure this out. I dont know why MS, and so many other weird multisystemic issues can get figured out and they cant even subcatagorize one subset of ME or Fund Lipkins Work.
At this point with all the good that is happening I hate to drop the bomb and Hijack the thread but the NIH has not given money to Dr Ron Davis or Lipkin...none to one and barely any to the other.
What does that say seems like there is much writing on the wall.
Great remission story maybe we could hear about the protocol or what Standford is doing currently so those that dont have much money can see what protocol looks like....similar to what Dr Chenney did for us.
Congrats on the remission...great story...hope this is the end of ME for this young women...
Laura Hillenbrand: Leaving frailty behind
This great news and I happy for her but as a patient community disclosing what works and does not work leaves questions unaswered to ask their Drs and caregivers.
I see people sharing lots of info and a lot of info is out their but protocols seem to be unavavailble. Symptoms not described etc.
I know this seems like a lot to ask of a person but transparency on many levels symptoms, tests, drugs user wood help people get access while meager results and limited funding keeps us hidden from public eye and with virtually no fubding for the disease burden.
I just cant say enough.....we need help and exposure and transparency....
I never read the full post so if this has been discussed great. If not I am waiting for the over 20 ME Organzaitions in North America to get on the same page and figure this out. I dont know why MS, and so many other weird multisystemic issues can get figured out and they cant even subcatagorize one subset of ME or Fund Lipkins Work.
At this point with all the good that is happening I hate to drop the bomb and Hijack the thread but the NIH has not given money to Dr Ron Davis or Lipkin...none to one and barely any to the other.
What does that say seems like there is much writing on the wall.
Great remission story maybe we could hear about the protocol or what Standford is doing currently so those that dont have much money can see what protocol looks like....similar to what Dr Chenney did for us.
Congrats on the remission...great story...hope this is the end of ME for this young women...
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