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Thanks Dr. Sadie for taking the time to answer our questions. A major problem we face now that will cause problems down the line needs to be acted upon by NIH. Nancy Klimas is ready to begin clinical trials but there is no mechanism in place for her to do so - she just hasn't the money.. I...

Ron Davis mentioned a 3rd possible driver for T cell clonal expansion: non-specific activation of the immune system. @Jonathan Edwards can you explain briefly what non specific activation of the immune system is and what diseases display this?

@Simon M sorry too to hear you are having a rough patch at present..... hopefully it will lift a little again. You are in our thoughts :hug:

I do agree. It's hard to know where we stand really... there is a bit of that false hope with the metabolic trap theory also. I know Linda Tannenbaum said that she truly believed we would have treatments within next 5 years. Great to hear at the time but not so great when u start realizing that...

@Simon M when did Davis say it could take several years?....I remember last May in my desperate state I emailed Janet Dafoe and I asked if we would have treatment within 10 years. .she qouted Ron as saying that he anticipated we would find something much sooner than that. But that was last May...

Are u saying .75 million per year??? Where is this info coming from, I don't see any announcements on their Facebook page. If it's .75 million per year that's brilliant

Finally, they have given him money. I wonder does he get all the money upfront or a set amount each year. It's not alot over 5 years but a start

I think it sounds too 'out there' but I don't think Dr.Davis is hyping anything, he is too solid for that. He believes they could be onto something but isn't promising anything. He has talked before about reaching dead ends and then having to start over as being a natural part of the scientific...

Ah jeez you are really hitting a nerve with me....I have felt that a bit about OMF but still, I hope to God we will have some treatments within 10 years. The one thing that gives me some hope is Nancy Klimas....she has possibly found a way of resetting homeostasis in Gulf War Illness. She thinks...

It sounds like he has alot of data but no cash

Oh God, I can imagine....painful!!

I just have to say I love ME Action's sense of urgency so much!

@Webdog is this kind of thinking directed at other chronic conditions like lupus and MS. Or is it just ME/CFS? Sorry haven't the energy to read thru it all. Feels like we always get the crap!!

Oh jeez, u can't be up to these guys. I have butterflies in my stomach about Thursday...I won't be watching but I will be lighting a candle and hoping to God that it goes well.

Not necessarily, there are moderately ill patients who could do an interview albeit with payback. Even if they had a family member with them for back up. A recovered patient mentioning the Optimal Health Clinic...is a massive no no for me. I'd prefer no coverage to that.

I think people that come on recovered do us no favours regardless of how well intentioned they are. It sends the message that the disease is not that serious and certainly doesn't do anything to encourage biomedical research funding. When I hear of Optimal Health Clinic, I want to cry into my pants.

Has the poor woman time for that? She has taken on so much already!

Huh?? That sounds bizarre. You'd imagine any ME patient would run for the hills upon hearing that!

Who the hell is funding AfME?? Surely not patients???? I am relatively new to the scene but I am learning....but I am confused as to where they are getting their funding from?

I opened it, thanks for taking people's ideas on board. I am way happier with updated version.