A unofficial update on Prof Davis and Janet Dafoe...

[Barry53]

I'm so grateful to Ron, Janet, Whitney and everyone at Ron's lab and OMF. Thank you!

Likewise.

 

[Barry53]

Many thanks @Ben Howell for posting this. I had not appreciated / understood the background of this, and having read this thread I then looked at http://stanmed.stanford.edu/2016spring/the-puzzle-solver.html. Hard to find the right words really, but hope, admiration, gratitude, sorrow, inspiring, courage, determination, integrity, respect, indebted ... are some that come to mind.

And from the above link, amidst all the stress and difficulties, still some droll humour:-

"He’s hoping to do this for everyone with CFS,” Davis says. Then he pauses. “I told him it would take a while."

What can we do? I think this quote posted by @PatJ says it for me http://forums.phoenixrising.me/index.php?threads/quote-of-the-day.548/page-39#post-798802:-

If you can't do great things, do small things in a great way.

―Napoleon Hill

 

[AndyPR]

What can we do to help? Donate, and not just to the OMF. Only with more money will things get easier for any of us, and the greater the number of scientists working on the problem the better. There will be some people who can't donate, and they shouldn't, but for those of us who can spare even a pound or a dollar, please seriously consider it, even the smallest of donations will mount up over time.

Should we have to do it? No, the research should be government funded but it isn't, so we have to get things going ourselves.

See http://phoenixrising.me/resources-2/research-charities for places to donate to.

 

[Janet Dafoe]

Whitney is so lucky to have such a great family, and we're so lucky to have Dr Davis and his research team on our case.

Hope you're catching up on your sleep, @Rose49!

@Ben Howell , @Rose49 ..... i'm really curious... as a former lab tech & researcher & now very severe patient, won't the stress of the situation on whitney having trouble w/the PICC skew the results? or does the stress not so much effect this particular test? or perhaps it doesnt make a difference in this case since its still early in research. i'm just real curious about this, since being off any sort of schedule is super duper stressful for us, esp. the very severe. ty.

Whitney wasn't very stressed by this. He has earbuds with white noise on and noise canceling earphones, and his head is turned away from us with his cap over his eyes and he doesn't look. I flushed his line and it was really really hard to flush and I couldn't get any blood to draw, but I don't think he knew that. I called "Vic the PICC" and they came out (they are far away, and booked, so it took them 2-3 hours to get here) and got the blood out and got the line to flush. The only stress on Whitney was waiting an unusually long time for his routine to happen, not knowing why, which likely did stress him, but he had no idea something was wrong with his line. And yes, as per the next comment in the thread, Ron isn't measuring things that would likely be altered by stress, and yes, Whitney's stress level is very high all the time. WE were stressed though!

 

[Rick Sanchez]

Just woke up and saw this. Thank you. It's so nice to have a friend in England who's awake while I'm up all night and understands and I can text. Ben is a wonderful friend. I can't wait till you are all better! And till I can have a normal life and sleep schedule! Love to you all. Hang in there! Ron is planning a webcast soon. I'm hoping next week. I'll let you know. He's so focused on the research and he doesn't want to slow it down by taking time out to do that or even to write a paper. But he's discovering a lot using Whitney's blood cells and is narrowing down the molecular mechanism of this disease. He's very encouraged and optimistic.

You and your family are really made out of something special. Can not thank you enough for everything you are doing for the cause.

 

[Janet Dafoe]

I wish we could offer more practical support. This intensity doesn't sound sustainable.

Thank you so much to everyone for wanting to help. I wish I could think of something. I could really use someone to help me with my bills and insurance claims, but that person would have to come here and work with me. My desk and business stuff are just a disaster. Not enough time and too tired. arghhh.

 

[boohealth]

Thank you so much to everyone for wanting to help. I wish I could think of something. I could really use someone to help me with my bills and insurance claims, but that person would have to come here and work with me. My desk and business stuff are just a disaster. Not enough time and too tired. arghhh.

Well, is it possible for us to find you someone like that? Is that a part-time book-keeper local to Palo Alto? How many hours do you need? I don't mind trying to locate that for you. Maybe they can even come at night if you have to stay up at night sometimes. Let me know what's needed and I'll get some resumes sent your way. Do you want a regular professional, or a skilled mildly/moderately ill ME sufferer, or family member of a sufferer--or does it not matter?

I have to apologize for not following up on your generous skype offer a few months back. I got waylaid by huge stresses, and hope to get to California (by driving) sometime in 2017, so would PM at such time.

P.S. This keeps popping into my head yesterday and today, so please take it in the best spirit, but please don't forget preventive checkups with all this stress and the overwhelming mission.

 

[Janet Dafoe]

Well, is it possible for us to find you someone like that? Is that a part-time book-keeper local to Palo Alto? How many hours do you need? I don't mind trying to locate that for you. Maybe they can even come at night if you have to stay up at night sometimes. Let me know what's needed and I'll get some resumes sent your way. Do you want a regular professional, or a skilled mildly/moderately ill ME sufferer, or family member of a sufferer--or does it not matter?

Thank you for this. I think I should PM you or something and I don't know quite how to tell you the answers. I don't know how many hours. And we are spending so much money on Whitney care and help that I don't know if we could manage a highly paid person. I'll think about it. Again, Thanks! Very thoughtful.

 

[boohealth]

@Rose49 I'm thinking of something like...fundraising for 100 hours at 20$ hour...(so, fundraising $2000), 10 hours a week for 10 weeks, on 2-3 separate days each week depending on your needs/schedule, for simple tasks to get your book keeping and business desk in order...maybe a mild CFSer who could use the cash...somebody who is able enough to offer that and lives in the vicinity--that's my thinking. Seems to me best to keep it in the community, to benefit in both real and intangible ways. I PM'ed someone involved in ME Action about it, she likes the idea, so she'll be in touch w/ you and Jen.

 

[Gingergrrl]

@boohealth Great idea and hoping you and @Rose49 will work together to put it into action. I love it!