Daisymay
Senior Member
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- 754
Can you try the line that you are an international charity hence it would be valid for you to be able to raise funds via Amazon from sales worldwide?
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Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Ben and Claire's adventure to Davis-Dafoe land!
- Thread starter Ben H
- Start date
Can you try the line that you are an international charity hence it would be valid for you to be able to raise funds via Amazon from sales worldwide?
Mary
Moderator Resource
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- 17,377
- Location
- Southern California
Hey @Strawberry
I had a crash a couple days ago, and this afternoon but not so bad-hence why I havn't updated thread with new update. We are here till the 4th March
Ben, I can’t help noticing that since your arrival in California, traditionally land of earthquakes and forest fires, it has been transformed into the land of mudslides and failing dams! I’m just wondering if this has anything to do with the coming of you and Claire, who maybe not so coincidentally are from the UK, land of rain and fog? Have you singlehandedly somehow ended our extreme drought???
Will keep a close eye on what happens (or doesn’t!) when you depart on 3/4!
Seriously, I’m really glad for you both that you have such an extended stay with Ron and Janet and very much look forward to following your continuing saga — I hope you recover soon from your crash. Someday I think you will be able to return and be a real tourist in San Francisco, walking everywhere and eating everything, thanks in large part to the work of Ron Davis and OMF.
Ben, I can’t help noticing that since your arrival in California, traditionally land of earthquakes and forest fires, it has been transformed into the land of mudslides and failing dams! I’m just wondering if this has anything to do with the coming of you and Claire, who maybe not so coincidentally are from the UK, land of rain and fog? Have you singlehandedly somehow ended our extreme drought???
Will keep a close eye on what happens (or doesn’t!) when you depart on 3/4!
Seriously, I’m really glad for you both that you have such an extended stay with Ron and Janet and very much look forward to following your continuing saga — I hope you recover soon from your crash. Someday I think you will be able to return and be a real tourist in San Francisco, walking everywhere and eating everything, thanks in large part to the work of Ron Davis and OMF.
Haha right?! All this rain!
Yea I've recovered somewhat-last few days have been crazy-in a brilliant way!
Will update tommorow
B
Sushi
Moderation Resource Albuquerque
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Now there is a wicked teaser--how are we going to sleep tonight?last few days have been crazy-in a brilliant way! Will update tommorow
Now there is a wicked teaser--how are we going to sleep tonight?
Haha, im sure you'll do just fine
Its not the next Lord of the Rings!!
(Its the editing that I have to do that takes ages-brainfawg=200edits and still not ideal!)
B
veganmua
Senior Member
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- 145
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- London, UK
That would be amazing! I tried to set up a sort of fundraiser for my family to donate money to OMF for my Christmas and birthday gifts. When they tried to donate it wouldn't work!
The most popular fundraising site is JustGiving.com, it would be fab if you were on there!
Janet Dafoe
Board Member
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- 867
Thank you. Sent to Linda.
Jesse2233
Senior Member
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- 1,942
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- Southern California
Haha, im sure you'll do just fine
Its not the next Lord of the Rings!!
(Its the editing that I have to do that takes ages-brainfawg=200edits and still not ideal!)
B
Ben you are an inspiration!
daisybell
Senior Member
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- 1,613
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- New Zealand
@Ben Howell I just saw your #kissMEgoodbye photo on Facebook.....the allure!!!!!!
Gingergrrl
Senior Member
- Messages
- 16,171
@TreePerson Will send you a PM as soon as I am able and am determined not to take Ben's thread off track!
Ben, I can’t help noticing that since your arrival in California, traditionally land of earthquakes and forest fires, it has been transformed into the land of mudslides and failing dams! I’m just wondering if this has anything to do with the coming of you and Claire, who maybe not so coincidentally are from the UK, land of rain and fog? Have you singlehandedly somehow ended our extreme drought???
@Mary, I was thinking the same thing LOL! I think our So. CA storm is going to hit No. CA on Mon or Tues so you guys up there can prepare. At least it is helping the drought!
I hope you are feeling better today @Ben Howell and look forward to reading the next installment of your journey!
TreePerson
Senior Member
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- 292
- Location
- U.K.
@Gingergrrl I am so sorry. Please don't worry about it. I'm afraid I am relatively new and I haven't worked out how to PM or many other things. It is indeed a wonderful happy thread that @Ben Howell has created.Love to all here.
Gingergrrl
Senior Member
- Messages
- 16,171
It's no trouble, and as soon as I have time, I'd send you a PM and then in the upper right hand corner of screen where it says "inbox" you'd have the number "1" (unless you had other PM's and then you'd have a different number).
It is indeed a wonderful happy thread that @Ben Howell has created.Love to all here.
Agreed on all counts! This is one of my favorite threads ever.
Part 7:
Meeting of minds
Today I had the huge honour of being invited to a meeting at Stanford Genome Centre, and to give a very small talk on my experience with MECFS.
I was slightly gutted not to get my 'usual' hug from the security guard, but to be fair i'd forgotten to put on any special aftershave. She did call me handsome though, so swings and roundabouts (she must not have had her glasses on)
Janet, Claire and I arrived during the meeting, which was fun trying to manoeuvre me between crowded seats clanging away with my wheelchair until a kind gentleman moved two seats away and made space for me. That gentleman was Craig Heller, reknowned Biologist and Scientific Advisory Board member!
I sandwiched myself between the wonderful Laurel Crosby and our lovely own @JaimeS , and listened. The meeting involved a video call with Lucinda Bateman, Susan Levine and Mike Snyder- Chairman of Genetics at Stanford. Jennifer Frankovich was also there, the founder and director of the PANS clinic at Stanford.
The amount of ideas and movement forward is staggering. Way beyond my expectation. I wanted to do a little dance at how clever, logical, team players these scientists and physicians are. I didn't ofcourse-but I wanted to. Ron has the ability to attract and collaborate with simply awesome, open-minded people. Thats a small part of the reason he is the incredible person he is. Ron is expanding his collaborative team, and one of the things the team is going to do is apply for one of the NIH RFA's. The team today was a subset as some could not make it.
Janet then spoke a little about myself, introducing me and then handed over to me to talk about my MECFS journey.
To say I was a little intimidated by the ridiculous intellect in the room would be an understatement, but my little talk seemed to go down well. I spoke about the start of the illness, supplements tried and tossed into the 'supplement graveyard', the situation in the UK and other countries and what MECFS feels like to me etc. Everyone was really attentive and asked questions, perhaps excited to have a real live specimen of a moderate-severe case in the room.
The meeting rounded up shortly after and we were provided lunch by Ashley. I felt a little undeserving of this having arrived only 30mins before, but hey, my salad was delicious.
I spent a lot of time talking to Laurel Crosby and Jaime, and they both shared brilliant ideas and mechanisms which can help explain why we are so ill. I also spoke to Fereshteh Jahanbani who is a brilliant molecular biologist. She and Laurel literally work at 200mph with ideas and explanations flying all over the place. Neatly, I must add.
Linda Tannenbaum was at the meeting too, as CEO/director of OMF and we had a huge hug. I had met her for the first time-in person-just a day before along with her Director of communications Marilyn. That was a really wonderful moment. I owe Linda an awful lot, for what she has done for me and for our community. They both do a very difficult job very well, raising money for this illness that is notoriously neglected and underfunded and this helps enable Ron and team to continue researching. They are both very special people, and some of the nicest people you could ever wish to meet.
Towards the end Craig Heller asked me some specific questions, and it was great to talk to a researcher of his calibre and have him so interested. I felt very fortunate to be able to talk to him, and tried to convey on behalf of the community what it is like to have MECFS-I did my best.
My overall impression was that ideas are really starting to converge and overlap-theories that can explain every symptom of MECFS. Rons new video will update and expand upon all the exciting new developments. We really have so many outstanding scientists onboard, and it really hits home being there in person.
The Stanford Genome Centre really is an incredible place, and the CFSRC (CFS Research Centre) is unparalleled. The relationship with OMF (who help fund) strengthens that bond.
I left with a message of hope-literally, with Craig Heller saying 'we're gonna figure this out'.
I believe him.
Some pics from the day!
Ron and I
Ron, Linda and Wenzhong Xiao
Jaime, Claire (above) and Laurel Crosby
^(I said lets do a 'serious working hard' photo-love @JaimeS hand expression and Laurel's intensity!
The girls! (Claire, Ashley, Jaime)
Linda
Meeting of minds
Today I had the huge honour of being invited to a meeting at Stanford Genome Centre, and to give a very small talk on my experience with MECFS.
I was slightly gutted not to get my 'usual' hug from the security guard, but to be fair i'd forgotten to put on any special aftershave. She did call me handsome though, so swings and roundabouts (she must not have had her glasses on)
Janet, Claire and I arrived during the meeting, which was fun trying to manoeuvre me between crowded seats clanging away with my wheelchair until a kind gentleman moved two seats away and made space for me. That gentleman was Craig Heller, reknowned Biologist and Scientific Advisory Board member!
I sandwiched myself between the wonderful Laurel Crosby and our lovely own @JaimeS , and listened. The meeting involved a video call with Lucinda Bateman, Susan Levine and Mike Snyder- Chairman of Genetics at Stanford. Jennifer Frankovich was also there, the founder and director of the PANS clinic at Stanford.
The amount of ideas and movement forward is staggering. Way beyond my expectation. I wanted to do a little dance at how clever, logical, team players these scientists and physicians are. I didn't ofcourse-but I wanted to. Ron has the ability to attract and collaborate with simply awesome, open-minded people. Thats a small part of the reason he is the incredible person he is. Ron is expanding his collaborative team, and one of the things the team is going to do is apply for one of the NIH RFA's. The team today was a subset as some could not make it.
Janet then spoke a little about myself, introducing me and then handed over to me to talk about my MECFS journey.
To say I was a little intimidated by the ridiculous intellect in the room would be an understatement, but my little talk seemed to go down well. I spoke about the start of the illness, supplements tried and tossed into the 'supplement graveyard', the situation in the UK and other countries and what MECFS feels like to me etc. Everyone was really attentive and asked questions, perhaps excited to have a real live specimen of a moderate-severe case in the room.
The meeting rounded up shortly after and we were provided lunch by Ashley. I felt a little undeserving of this having arrived only 30mins before, but hey, my salad was delicious.
I spent a lot of time talking to Laurel Crosby and Jaime, and they both shared brilliant ideas and mechanisms which can help explain why we are so ill. I also spoke to Fereshteh Jahanbani who is a brilliant molecular biologist. She and Laurel literally work at 200mph with ideas and explanations flying all over the place. Neatly, I must add.
Linda Tannenbaum was at the meeting too, as CEO/director of OMF and we had a huge hug. I had met her for the first time-in person-just a day before along with her Director of communications Marilyn. That was a really wonderful moment. I owe Linda an awful lot, for what she has done for me and for our community. They both do a very difficult job very well, raising money for this illness that is notoriously neglected and underfunded and this helps enable Ron and team to continue researching. They are both very special people, and some of the nicest people you could ever wish to meet.
Towards the end Craig Heller asked me some specific questions, and it was great to talk to a researcher of his calibre and have him so interested. I felt very fortunate to be able to talk to him, and tried to convey on behalf of the community what it is like to have MECFS-I did my best.
My overall impression was that ideas are really starting to converge and overlap-theories that can explain every symptom of MECFS. Rons new video will update and expand upon all the exciting new developments. We really have so many outstanding scientists onboard, and it really hits home being there in person.
The Stanford Genome Centre really is an incredible place, and the CFSRC (CFS Research Centre) is unparalleled. The relationship with OMF (who help fund) strengthens that bond.
I left with a message of hope-literally, with Craig Heller saying 'we're gonna figure this out'.
I believe him.
Some pics from the day!
Ron and I
Ron, Linda and Wenzhong Xiao
Jaime, Claire (above) and Laurel Crosby
^(I said lets do a 'serious working hard' photo-love @JaimeS hand expression and Laurel's intensity!
The girls! (Claire, Ashley, Jaime)
Linda
Attachments
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Jennifer J
Senior Member
- Messages
- 997
- Location
- Southern California
Thank you, Ben!
That made me tear up and cry a little.
Thank you @Ben for sharing all this and spending so much energy trying to write it with being foggy and all. You are quite talented. And thanks for the pictures, too! It's so good to see the faces of all these lovely people.
Thank you to all the amazing and brilliant people working on this!
@Ben thank you for being our correspondent! Rest as you can and take good care of yourself.
Molly98
Senior Member
- Messages
- 576
This is the most excitement I have had in years. What an adventure @Ben Howell, thank you so much for your updates it feels as if you have taken us all with you.
Much love and thanks to you and all the OMF bunch and all the other scientist involved, it gives so much hope. It feels like the beginning of spring after the deepest darkest winter.
I can't tell you how reassuring it is that the scientists trying to figure out the disease want to hear from you, a patient with the disease and are genuinely interested in your thoughts and experiences, what a absolute contrast how things have been in the UK and probably worldwide. It is so heartening and refreshing to hear.
Thank you
Much love and thanks to you and all the OMF bunch and all the other scientist involved, it gives so much hope. It feels like the beginning of spring after the deepest darkest winter.
I can't tell you how reassuring it is that the scientists trying to figure out the disease want to hear from you, a patient with the disease and are genuinely interested in your thoughts and experiences, what a absolute contrast how things have been in the UK and probably worldwide. It is so heartening and refreshing to hear.
Thank you
How Wonderful this is
I can`t express with words how thankful I am to all this people for their commitment to find solutions for this desease.
Yes we are so ignored in most of the countries we live . Besides the fact of having to struggle with this illness, we are sort of stigmatized. Just the fact of having a test would be such a relief
Thank you so much @Ben Howell !!!!!!
I can`t express with words how thankful I am to all this people for their commitment to find solutions for this desease.
Yes we are so ignored in most of the countries we live . Besides the fact of having to struggle with this illness, we are sort of stigmatized. Just the fact of having a test would be such a relief
Thank you so much @Ben Howell !!!!!!
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Jill
Senior Member
- Messages
- 209
- Location
- Auckland, NZ
Thank you Ben ! I've always wanted a person with smarts to listen intently to how I describe the illness . To me it's like a switch is going on and off - always has been and it's why I know I could be helped if only someone cared to listen . I have had 2 remissions - one following ruptured appendix surgery ( 3 months ) , the other after another longer surgery . Both times the was a day when the illness just seemed to seep back into me. Thankfully I do experience the good day bad day phenomena - for two years in my twenties I was bed bound . I'm now 51. The worse thing now is stress - either too much brain work or emotional stress . I think I've just adapted to the low physical ability . My partner though is room bound and feels like his muscles are acid and his brain is inflamed . We just don't seem to be able to find things that move his illness , whereas I've responded nicely to ldn. Al I suspect has more autoantibody or whatever .
It's so wonderful to read your summaries . I remember going to my first CFS conference - that was hugely validating . What you are doing is stages on from that ! I wish I could be a fly on the wall at those meetings. This is what keeps me going and keeps me going to look after al too . Thank god for Ron and everyone there . I'm just soooo grateful to them all xxxxxxc
It's so wonderful to read your summaries . I remember going to my first CFS conference - that was hugely validating . What you are doing is stages on from that ! I wish I could be a fly on the wall at those meetings. This is what keeps me going and keeps me going to look after al too . Thank god for Ron and everyone there . I'm just soooo grateful to them all xxxxxxc
Janet Dafoe
Board Member
- Messages
- 867
I agree! I don't know @Rose49 or @Ben Howell or @JaimeS but they all seem like the rockstars of MECFS to me. Among other vocal advocates for us, of course. I am loving this thread so much!
I want to add a reminder that if you purchase things on Amazon you can donate to Ron Davis' research by going to http://smile.amazon.com/ and selecting OMF as your charity.
it was filmed last Monday and likely will be out on Monday or Tuesday. Ashley has been editing it to put in his slides.