Ben and Claire's adventure to Davis-Dafoe land!
- Thread starter Ben H
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I sent an email to linda Tannenbaum asking about this. Great idea!
I'm in the UK, I use https://www.easyfundraising.org.uk for Amazon purchases. At the moment I have it set up to donate to ME Research UK, but I'd love if OMF was included as on option on there! You can donate a percentage of purchases from many other retailers on there, too!
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i was a girl scout 4 many yrs (it was a family thing!) my mom was my leader & the "cookie chairman" 4 my town, so all the cookies ordered from my town ended up in our basement, stacked 2 the ceiling!!! any how, since they were a once a year thing (& yes we stashed boxes in the freezer...never lasted long)....we savored them, i hope u did 2 ben!!!....in fact i savored them so much that i used 2 serenade the samoa's (my fave. variety) with the following cheesy '70's hit .....
Hi @Zombie_Lurker
I deliberately did not say a lot about Dr Chheda because
1.) It was my first consult with her.
2.) I had no experience of folowup which is just as important if not more so than initial consult imo.
3.) My experience may not mirror others and its ultimately a very personal choice.
Having said that, and having met up a couple of times since, I really like her.
She is very open minded, very patient, very serious yet good natured, and I have had prompt followup from any questions I have had. She has offered me choices and we work together.
So yes, my experience with her has been very positive. Thats all I can say. The other staff at OMI have been really nice and helpful too.
B
I deliberately did not say a lot about Dr Chheda because
1.) It was my first consult with her.
2.) I had no experience of folowup which is just as important if not more so than initial consult imo.
3.) My experience may not mirror others and its ultimately a very personal choice.
Having said that, and having met up a couple of times since, I really like her.
She is very open minded, very patient, very serious yet good natured, and I have had prompt followup from any questions I have had. She has offered me choices and we work together.
So yes, my experience with her has been very positive. Thats all I can say. The other staff at OMI have been really nice and helpful too.
B
Thanks Ben for all the updates. It must be so surreal . I've passed on the info to my partner who is severe and so the hope get passed along. I would be well enough to make the journey so it will be interesting to see what they can do for you. Did I read it right - did you think you felt 'nice tired ' after the saline. Alan was once given saline and he thought there was something in it . Anyway as per usual in NZ can you get a dr to put up a drip - no . Apparently there's a risk . If this rhematologist doesn't help he's going to be leant on heavily by me to try saline . I'm dealing directly with the clinical director of the hospital and am quite happy to go to his boss if I don't get the help required .
Thanks again. Looking forward to the next instalment
. I read it all this afternoon and was smiling all the time
Thanks again. Looking forward to the next instalment
. I read it all this afternoon and was smiling all the time
I did feel 'nice tired' after one, but its not something thats been repeatable. My experience with saline IV has been mixed-sometimes I think they really help a little, sometimes not. But I most likely have an issue with vasopressin which could help explain why (not retaining fluids).
Hey @Neunistiva
Im sorry to hear this.
Ive used it in both situations and it has worked, but sometimes not at all. It has been helping maybe 1% since being out here, but I will take that. Luckily my extreme sensitivity to light and noise (I was living in a a cave August-January) cleared up before this trip. No rhyme or reason to it.
Yes the experience is otherworldly and wonderful. No questioning, no having to explain yourself or feel as if you have to validate yourself (not that I do that anymore-I dont give a shit what UK Drs think anymore).
Hey @justy
I hope you are doing ok-I am sorry for your treatment response. Thats disheartening. But do not fear, Prof Davis is making huge strides. Just needs more funding so thanks so much for donating-it really, really helps!
Claire is doing fine thanks. She has been able to have some tours in San Francisco while Ive been here and do other stuff which is great. Im just gutted I cannot do it with her!
B
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Hey Ben, When I went to the OMI a couple years ago my test results for vasopressin showed undetectable levels. But when I tried to use the analogue drug desmopressin as a replacement, it made me feel worse (even less energy). So I'm not sure if that means that vasopressin is being kept low for "good" reason, or if desmopressin simply doesn't have all of the same necessary biological effects that vasopressin does (which it doesn't). I hope desmopressin is helpful for you though!
Also, when I was there, the doctor said the top two lab test abnormalities they were seeing in ME/CFS were low natural killer (NK) cell function and low vasopressin. I'm curious if that's still the case, if you've heard anything?
PS Check your inbox when you feel up to it.
Also, when I was there, the doctor said the top two lab test abnormalities they were seeing in ME/CFS were low natural killer (NK) cell function and low vasopressin. I'm curious if that's still the case, if you've heard anything?
PS Check your inbox when you feel up to it.
Perhaps you know this, dangermouse, but it is also a huge difference to how ME/CFS patients are typically treated in the U.S. ...it isn't just the UK. Ben Howell is obviously in good hands, but most of the rest of us in the U.S., not so much. If you're unlucky enough to find yourself in most any Emergency Room, you are as likely to be ridiculed as to be taken seriously.
As a patient in the U.S., in the last few years I have been treated as horribly by the medical profession as anyone in the U.K. has. So it's good to know that OMI treats their patients right.
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.
These guys are the 1% of the US. 99% of US doctors snub their nose at us. But it is nice to know that I can sit on an airplane for 2.5 hours and be with doctors who CARE. Apparently there are a few others in this huge nation, but I am glad I chose OMI!
@Ben Howell Good to see you still holding up well! How much longer are you two on this side of the pond?
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
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
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I don't know the answer but when I was tested there in 2014, my NK functioning was extremely low and my vasopressin was undetectable. So I match w/you on these two tests but at that time they thought I had ME/CFS and now they do not. So these factors must correlate w/other things, too. (Am speaking only of my own case and not re: Ben or any other patient).
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Hey Andy. Who knows? Hopefully Saline IV, will be getting extensive testing. Basic stuff the NHS stick their fingers in their ears about, and more advance stuff. I have some ideas about what may be going on and not helping.
But the main reason is testing and thus options. Opportunity to try something that may give me just 5%. It may not happen-and im comfortable with that, but at least I will have tried.
B
But the main reason is testing and thus options. Opportunity to try something that may give me just 5%. It may not happen-and im comfortable with that, but at least I will have tried.
B
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I too keep a reverse sleep schedule (my brain's preference now) so perhaps on my next trip (summer) to OMI to see my doctor I will have to pop over and say hello
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We are looking into becoming a UK charity. I hope we can!
Really? I hope you can too! I think a lot of us in the UK would like to raise money for you here but it's difficult to ask strangers to donate to a US charity. And those UK people who are taxpayers can give the same amount of money to a UK charity and have the govt add money onto it, so that's a strong pressure to donate to UK rather than overseas charities.
Hi @Gingergrrl I hope you don't mind me asking what it is they think you have now? If not ME/CFS?
As an aside, does anyone know if you can give to OMF through payroll giving? That way UK people give before they pay tax so it wouldn't matter. You won't be surprised to know this doesn't relate to me personally, I haven't paid tax in years, but I was discussing with someone else.
They would need to be a UK registered charity by the look of it
From https://www.gov.uk/payroll-giving
From https://www.gov.uk/payroll-giving