Ben and Claire's adventure to Davis-Dafoe land!

[Jennifer J]

Hi, @Ben! I'm so glad you are here! Welcome to California.

I love the community we have here on PR and the graciousness of Ron and Janet (@Rose49) never ceases to touch, amaze and move me. I wish Southern California was close to Northern so I could meet you and Claire while you are here.

Thank you for posting and sharing this experience with us. It is so exciting and uplifting to hear and to vicariously experience this with you and cheer you on from my bed. Thank you for the great energy you bring to the forums and all that you do. I hope the doctors can find ways to help you. Rest, take good care and enjoy.

 

[Gingergrrl]

Survivors if ever there were.

Barry, I couldn't agree more.

I wish Southern California was close to Northern so I could meet you and Claire while you are here.

Agree on this one, too. Why are So CA & No CA so dang far apart?... Really a bummer! I have several close friends who travel to OMI from around the country but I never get to meet them b/c I am 6-7 hours south (with no traffic).

 

[Binkie4]

@Ben Howell -

So hoping that this magnificent journey brings some improvement to your physical health. Your descriptions are wonderful so that we are able to share something of your experience, your meeting Janet (@Rose49) and Dr Davis. The OMF just grew more solid as a family. Cried as I read your descriptions.
My biggest wish is for some improvement in your health, and Whitney's of course. Thank you for using some of your precious energy to share it with us.

 

[Janet Dafoe]

Me please?

Where do you live?

 

[justy]

Where do you live?

Hhaha - West Wales, UK, and recently very sick again after a failed treatment attempt in Europe. One day...

But bless you for having Ben and Claire stay with you, when you must be so worn out looking after Whitney and working, fighting and advocating for all PWME. I have had a sick daughter too, so I know the pain it brings to watch our children suffering.

 

[Undisclosed]

@Ben Howell

Sorry to hear you are so ill now. Glad you tolerated the flight, flights are hard is so many ways.

Thank you for all the updates.

Best wishes to you and @Rose49 and Ron.

 

[Ben H]

Hey guys,

Just to say I am so touched by your wonderful messages on here and making this such a cool thread. Seriously, what an amazing bunch of selfless people we have on here, and full of hope.

Sorry I didn't post last night. Crashed fairly hard after Saline (sleepy) and a crazy long day and tons of blood tests.

Anyway...




Part 4:

Im in bed with Janet. Don't worry-I got the go ahead from Ron. Yikes, that makes it sound even worse Hmm...Lets backtrack!

So my days so far are pretty standard since being in California, except from waking at 4am for whatever reason-time zone difference, whatever.

Im in bed all day as per usual, but I have a lovely view of all the extensive foilage in Palo Alto from our room, and the rain outside is pretty soothing. My heart yearns be out and about seeing the town and San Francisco, but its just not feasible for me, but I counted on that being the case. So I 'rest' all day in bed as per usual, and when Janet awakes from her shifts from Whitney mid afternoon we chat.

This time I got a text invitation to their bedroom! Bit forward-I've only been here 4 days and strike 1! Joking aside, Ron had come back from the lab and Janet catches up with the progress from the day as she wakes up.

So I was invited to join and listen to the progress, while lying in their very comfy bed. I couldn't help but notice the huge number of toy pandas in the room, but I need to follow up on that. Made me chuckle.

Ron preceeded to talk about the days progress, with Janet and myself avidly listening. It is truly mesmerising listening to him. Many times I have wished I were a fly on the wall, but this was for real. I was there in person.

And WOW. The research they are doing is mind boggling. The team at OMF and at the Stanford Genome Centre is exceptional, and is so advance, meticulous and dare I say ahead of the game, one cannot help being optimistic.

We should hopefully have a live webinar later this month, and Ron will be talking about the research then. But, as much as my addled mind can take in, I can tell you-we are in for a wild ride.


B

 

[Hajnalka]

1000 likes! Thank you so much for your reports, they give me much needed hope! Janet and Ron sound so amazing. I'd love to hear about your medical appointments too, if you're up for that.

 

[trishrhymes]

It feels like you're there for all of us. Thank you Ben. We're all in that big bed with you ...

And thank you Janet and Ron for sharing your lives in this generous way.

Aw I've gone all tearful, lying here in my bed in Dorset with my daughter in her bed across the hall. (Both housebound but not completely bedbound with decades long ME).

I lie here and close my eyes and imagine all us ME folk in one glorious big bed listening to Ron telling us how he's trying so hard to make it OK for us. And most of all for Whitney.

We're with you all in spirit.

 

[Aroa]

I think we could never be thankful enough to Ron Davis, Janet and all OMF team for their hard and priceless work.

Somewhere in the world , we feel there are people who understand and care for us

Unfortunately this is something that doesn´t happen in some of the places where we live.

And it is great to have you there Ben sharing with us your experiences so we can be somehow part of your dream.

 

[Barry53]

Im in bed with Janet. Don't worry-I got the go ahead from Ron. Yikes, that makes it sound even worse

Or better

 

[rebecca1995]

Ben, I'm so glad you have been able to make this trip! I hope the treatment you're getting gives you a lot, or even a little, improvement. Best wishes to you, Claire, and the entire Davis-Dafoe household. It's wonderful that you are getting to socialize a little bit with each other. That must be a nice break for Janet, in particular.

Thanks for the updates!

 

[otherworldly]

i am loving every damn bit of this play by play! ty does not eve suffice.....xx

 

[Gingergrrl]

Im in bed with Janet. Don't worry-I got the go ahead from Ron. Yikes, that makes it sound even worse Hmm...Lets backtrack!

This made me laugh and @Ben Howell you should seriously be a professional writer (if you are not already)? I hope this sentence does not give anyone the wrong idea about our great state of CA... LOL.

 

[Ben H]

Part 5:


Stanford Genome Centre. Where the magic happens! I was extremely excited-quite an alien emotion these days but a frequent one on this trip. Im sure all of you can empathise with the feeling of excitement combined with the physicality of having a fragile, broken body. A strange, paradox.

So we headed off at 9:30am and arrived at the Genome Centre at about 10. Plenty of space in the carpark which made it really easy to be wheeled in! Im so "Team Stanford" it borders on embarrassing. I almost brought my Stanford socks scarf. Just kidding. Or am I?!

The security guard was an absolute hoot! We were joking about something as she helped me get wheeled in, and the next thing I know she is giving me a huge hug and telling me I smell nice!!! First it was Janets bed, now this-I'm on FIRE this trip!

One thing I noticed was that everyone in the building was so incredibly kind and helpful. Opening doors, smiling, chatting, the staff were just awesome. On a brief side note thats something I have noticed a lot in the brief time over her so far-Americans in California are really friendly! Anyway, back on topic.

The Genome Centre was a bit of a maze, even for Claire. But we finally got down to the lower level and navigated to our destination with the help of the staff.

Rounding the corner I caught a glimpse of my destination....Laurel Crosby! I have been in contact with Laurel for a while now and I can tell you she is an uber brilliant and a wonderfully innovative scientist and human being. She works so incredibly hard for us, and has brilliant ideas. Working with Ron they make a super team! And next to her our own smart cookie Jaime! @JaimeS
Cue cognitive overload and plethora of hugs! It was truly wonderful to meet them both in person.

Up next was to test my blood with Ron's nano fabricated electrical impedance device! Try and say that quickly! We took a draw of my blood to see if it would react like Whitneys (and the other CFS patients) when the cells were put under stress. The test would take at least a few hours to come back.

I was really hoping it would come back the same as all the others, but if it did not then so be it.

Throughout the day I pondered on what the result might be, the incredible science involved, and the wonderful team at the Genome Centre.

Late that night the results were in. My blood WAS reacting like Whitneys!

 

[Gingergrrl]

Amazing photo and right now if you showed me a photo of the three biggest celebrities on earth (whoever that might be?!) or this photo of the three of you, I would choose to meet the three of you hands down. And all three of you would get a big hug (since you already know Californians are friendly LOL).

I am fascinated by the blood test you mentioned @Ben Howell and is it available anywhere outside of Dr. Davis's lab at Stanford? Right now would this test be considered the closest thing we have to a "bio-marker" to determine if someone has ME/CFS vs. another illness? Can anyone take the test if they can get to Stanford and pay for it?

ETA: Actually I am wondering, can blood be sent to Stanford for this test or would the patient have to be there in person?

 

[Ben H]

Amazing photo and right now if you showed me a photo of the three biggest celebrities on earth (whoever that might be?!) or this photo of the three of you, I would choose to meet the three of you hands down. And all three of you would get a big hug (since you already know Californians are friendly LOL).

I am fascinated by the blood test you mentioned @Ben Howell and is it available anywhere outside of Dr. Davis's lab at Stanford? Right now would this test be considered the closest thing we have to a "bio-marker" to determine if someone has ME/CFS vs. another illness? Can anyone take the test if they can get to Stanford and pay for it?

ETA: Actually I am wondering, can blood be sent to Stanford for this test or would the patient have to be there in person?

Hi @Gingergrrl

Thanks for the lovely comments.

This test is purely research at the moment. There is no way to have this test as it is in the very early stages. Its a very exciting and promising test but scaling up the operation requires a lot more money!


B

 

[AndyPR]

Great to get the on going reports Ben

To everybody else, are you inspired by Ben's reports? Do you want treatment to be available to as many patients as possible? And do you have at least $10 that you can spare? Then donate to research. Any research will do, as we need separate groups researching different areas and trying to replicate any successful research. And if you can't afford to donate, then try to spread awareness of ME, and try to encourage others to donate.

We shouldn't have to crowd fund our way out of this illness but until the authorities worldwide step up and take responsibility we will have to do our best to make it happen.

Here ends the public service announcement

 

[Jenny TipsforME]

I've just been woken up by the freezer alarm (door left ajar) and I thought "ah Ben and Claire's adventure will cheer me up!" It is exciting to experience it through your eyes.

Also interesting that your blood is reacting like our tribe. I imagine it would have been weird emotionally if this hadn't been the case. The diagnostic process has been so poor, presumably there are blood samples submitted which don't conform because ME was a misdiagnosis (rather than diversity within pwme)? Or do they do quite thorough screening questionnaire wise before they go ahead with the expensive tests?

 

[Barry53]

I am not easily impressed ... but I am really impressed! .

Great picture, for a couple of reasons imho. 1) It is a great picture! 2) It helps reinforce the reality of of your trip: the very real endeavours of Ron Davis et al, and their willingness to share their efforts with us; ditto your good self .

Really good thread here @Ben Howell (and all those helping you make it happen).