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

[Murph]

you have a way with words @Ben Howell and this serialised approach is working a treat. Keep it up!

@JaimeS did you get assigned the bench work you were after?! ( this is a reference to note on whiteboard in the pic...)

 

[Barry53]

This test is purely research at the moment. There is no way to have this test as it is in the very early stages

Is it possible to explain what the test actually is, or is that confidential at the moment? The description "nano fabricated electrical impedance device" suggests it might be a microscopic-scale resistance/impedance meter of some kind. And out of personal interest, is it fabricated using FIB (focused ion beam) technology by any chance?

 

[Aroa]

What a nice read to start the day with

Great picture and great people in it !!!!

A BIG thank you to all the people working at Stanford Genome Centre. We You

 

[MEPatient345]

@Ben Howell this is so thrilling to follow along with you. Can you tell me if it's possible for any patient of OMI to go to the Stanford genome center and pay to get these extra research tests done? I have been holding off on travel as I wait for more results to come out. But if I could do this I would think of traveling. Please let me know!

 

[slysaint]

This thread is wonderful.............I can't find the words just now, but 'seeing' you all as 'real' people, not just 'names on the internet' is just so uplifting.
Thank-you

 

[DeceptivelySlow]

Wow Ben, what an epic trip on all sorts of levels. As others have said you are a wonderful writer and your ability to convey not only details but the spirit of your journey is fabulous. Thanks for sharing your trip and your precious energy with those at home going along vicariously.

 

[Janet Dafoe]

I'm sitting here at 6:20 am waiting to finish up with Whitney and unhook his j tube pump. I can't really think of how to convey how meaningful and wonderful it is to have Ben and Claire here. Seriousness, fun, sadness, laughter, profound connection. That will have to do.

The research he's talking about has been developing since Ron started working on this. Whitney's blood, one week at a time, week after week, only enough money to do one experiment per week. Gradually going deeper and deeper into the metabolism and mechanisms of his sick cells, developing technology along the way to answer each question as it came up. Now gradually seeing if what they've found is true for other ME/CFS Patient's (yes, so far) or healthy controls (no, so far). Excitement and anticipation building. Hope. Enabling tests of treatments. He's absolutely focused on doing things that will lead to treatment faster, and avoiding distractions. That's why you don't hear too much from him, why the video isn't done yet (will be soon!) and why no paper is published yet. Given the choice between writing and making progress, he chooses progress. Driven by the suffering of Whitney and all of you. And me. Care taking is hard and devastating, we are very hopeful and Ron, a conservative scientist, is optimistic.

This new NIH RFA is a hard one. Not enough money. Lots of requirements that may distract from his progress. But he's gathering a team and figuring it out.

Hang in there! And keep bugging NIH for more money, and keep up your wonderful fundraising that is keeping him going! Thank you so much to you and to OMF and Linda Tannenbaum!

 

[Sasha]

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.

The donation link is in my signature.

(Or here, for anyone having trouble seeing it.)

 

[otherworldly]

oh ben! i recognize ur sense of humor as being quite similar 2 mine as it once was, b4 getting 2 severe 2 even get that stuff out in writing....ur a HOOT! ty 4 providing us w/such a well written account, not 2 mention entertainment!!! many of us r living vicariously thru u! also, & a big ty 4 providing janet with, I'm sure, a very pleasant brake from her normal routine!

 

[Old Bones]

@Ben Howell Many thanks. Your entertaining and inspiring account of your "adventure to Davis-Dafoe land" prompted today's donation to the Open Medicine Foundation.

For those considering doing the same, there is a location on the OMF donation page to write a tribute. "In celebration of" seemed the most appropriate choice to recognize and express appreciation for Ben's remarkable contribution in keeping us informed about the exciting research being done by Ron and his team. Of course, @Rose49 's long-standing support is also very deserving of our thanks.

I look forward to your next installment, Ben. But do take care of yourself. May you find the answers you are seeking, and a path towards improved health -- sooner, rather than later.

 

[Ben H]

I am so touched by your wonderful comments guys-each and every one. The ball has really rolled with this it seems! I'm so glad I can keep you wonderful people all informed, as best I can, but the thanks needs to go to Janet and Ron for even enabling any of this to happen.

@Ben Howell Many thanks. Your entertaining and inspiring account of your "adventure to Davis-Dafoe land" prompted today's donation to the Open Medicine Foundation.

For those considering doing the same, there is a location on the OMF donation page to write a tribute. "In celebration of" seemed the most appropriate choice to recognize and express appreciation for Ben's remarkable contribution in keeping us informed about the exciting research being done by Ron and his team. Of course, @Rose49 's long-standing support is also very deserving of our thanks.

I look forward to your next installment, Ben. But do take care of yourself. May you find the answers you are seeking, and a path towards improved health -- sooner, rather than later.

Thankyou so much @Old Bones ! That is so touching!!!

This is exactly what we need for Prof Davis to be able to continue as quickly as possible for all of us! Everything Janet @Rose49 has said above is so so true.

Next 'installment' should be tommorow


B

 

[Sushi]

I can't really think of how to convey how meaningful and wonderful it is to have Ben and Claire here. Seriousness, fun, sadness, laughter, profound connection. That will have to do.

I am so glad for you all. And having this fantastic saga in installment form is a huge delight for all of us.

Now gradually seeing if what they've found is true for other ME/CFS Patient's (yes, so far) or healthy controls (no, so far). Excitement and anticipation building. Hope. Enabling tests of treatments. He's absolutely focused on doing things that will lead to treatment faster, and avoiding distractions.

This is such exciting news! Thanks for finding the time for this quick update--it really means a lot. And, finally, research focused on moving to treatment! Don't let any of us distract Ron!

Given the choice between writing and making progress, he chooses progress.

This is cause for celebration in the patient community. As you know well, many of us had almost given up on finding significant treatments in our lifetimes.

I'm so glad I can keep you wonderful people all informed, as best I can, but the thanks needs to go to Janet and Ron for even enabling any of this to happen.

Thanks to all of you. Putting this all together is leading to hope. Ben, I think we are each identifying with you and your journey and your gift for writing hits us in the heart.

 

[Binkie4]

Something very special going on here. Tears as I read and a real sense of " profound connection" as @Rose49 said. It's a rare commodity and if Me/cfs has brought anything of value, it is this. Not that I want any of us for any reason to have this wretched illness, and I long for Ron's efforts to be translated into treatments, but somehow the connection feels a precious rare gift. Also the gift of hope in the arid landscape that is the world of ME.
Thank you @Ben Howell for your descriptions when you must be feeling exhausted, to Claire, and for Janet and Ron's never ending commitment in the search to cure Whitney, Ben and us all.
Will make another donation today.

 

[Ritto]

Ben and Claire at Ron and Janet's is the best pick-me-up. Thanks so much for letting us know what you are doing and how it is for you Ben.

 

[Ben H]

Something very special going on here. Tears as I read and a real sense of " profound connection" as @Rose49 said. It's a rare commodity and if Me/cfs has brought anything of value, it is this. Not that I want any of us for any reason to have this wretched illness, and I long for Ron's efforts to be translated into treatments, but somehow the connection feels a precious rare gift. Also the gift of hope in the arid landscape that is the world of ME.
Thank you @Ben Howell for your descriptions when you must be feeling exhausted, to Claire, and for Janet and Ron's never ending commitment in the search to cure Whitney, Ben and us all.
Will make another donation today.

Thanks so much @Binkie4 for the kind words, and the donation! I agree with your words.

Ben and Claire at Ron and Janet's is the best pick-me-up. Thanks so much for letting us know what you are doing and how it is for you Ben.

Thanks @Ritto , thats so nice to hear!


B

 

[Gingergrrl]

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!

Thanks @Ben Howell for explaining this and I was wondering if there is a way that people can make donations that are especially earmarked toward the development of this test so that more people can have it in the future?

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.

In my case, I just want to know b/c I am so unsure if ME/CFS is my diagnosis and if this test could help to determine it in the future, it would be amazing. I could live with the results either way and many days the not knowing bothers me more!

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

Agreed and this wins my favorite thread of the year award (if there was such a thing LOL).

Is it possible to explain what the test actually is, or is that confidential at the moment?

I was curious, too! If it's confidential or would mess anything up then don't even answer the question. But if it is possible to share more, some of us are very curious!

Can you tell me if it's possible for any patient of OMI to go to the Stanford genome center and pay to get these extra research tests done?

@Sliencio, as am OMI patient, to the best of my knowledge, it is not possible at this time.

Now gradually seeing if what they've found is true for other ME/CFS Patient's (yes, so far) or healthy controls (no, so far).

@Rose49, I was curious, in addition to testing ME/CFS patients and healthy controls, have they tested any patients who are ill with autonomic/neuroimmune/autoimmune illnesses (but not ME/CFS) to see where their blood fits in the spectrum?

Thank you so much to you and to OMF and Linda Tannenbaum!

Agreed and they are a huge part of our most amazing little corner of the internet (us here ) IMO.

 

[Marc_NL]

@Rose49 thanks to you both for your great work and especially for updating us here

Now gradually seeing if what they've found is true for other ME/CFS Patient's (yes, so far) or healthy controls (no, so far).

I would like to know if ME sufferers are tested that are in remission for some years, in other words would you always be tested positive with this test even if in remission or "cured".
If this was not tested what would be your "best guess" ?

 

[TiredSam]

Ben and Claire at Ron and Janet's

I think we should crowd-fund a ladybird book.

 

[Janet Dafoe]

@Rose49 thanks to you both for your great work and especially for updating us here

I would like to know if ME sufferers are tested that are in remission for some years, in other words would you always be tested positive with this test even if in remission or "cured".
If this was not tested what would be your "best guess" ?

Yes. That is happening very soon.

 

[TreePerson]

I love this thread it is so uplifting and @Rose49 you and Ron feel like a Mum and Dad to us all. Thank you.