Red Hot researchers spice up Chilli ME Challenge — Live!
Watch renowned researchers Drs. Ian Lipkin and Mady Hornig take the Chilli ME Challenge, LIVE from New York by webcast this coming Wednesday, 1st July at 1 p.m. EST.
Discuss the article on the Forums.

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

Discussion in 'General ME/CFS Discussion' started by Ben Howell, Feb 7, 2017.

  1. Jan

    Jan Senior Member

    Messages:
    249
    Likes:
    1,438
    Devon UK
    That would be so good, I order so many things from Amazon.
     
    Aroa, Jennifer J, Ben Howell and 7 others like this.
  2. Rose49

    Rose49 Senior Member

    Messages:
    202
    Likes:
    4,883
    I sent an email to linda Tannenbaum asking about this. Great idea!
     
    Mary, Aroa, MEMum and 15 others like this.
  3. veganmua

    veganmua Senior Member

    Messages:
    103
    Likes:
    122
    London, UK
    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!
     
    MEMum, Rose49, Cohen2 and 11 others like this.
  4. otherworldly

    otherworldly

    Messages:
    12
    Likes:
    44
    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 .....
     
  5. Ben Howell

    Ben Howell OMF Correspondent

    Messages:
    497
    Likes:
    4,724
    U.K.
    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
     
    veganmua, Mary, Aroa and 19 others like this.
  6. Ben Howell

    Ben Howell OMF Correspondent

    Messages:
    497
    Likes:
    4,724
    U.K.
    Hey @Jill

    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
     
    Last edited: Feb 16, 2017 at 11:59 PM
    Sandman00747, Mary, Aroa and 23 others like this.
  7. nandixon

    nandixon Senior Member

    Messages:
    720
    Likes:
    1,520
    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.
     
    Mary, MEMum, Binkie4 and 4 others like this.
  8. geraldt52

    geraldt52 Senior Member

    Messages:
    346
    Likes:
    1,273
    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.
     
    -Jessie-, Mary, Aroa and 16 others like this.
  9. Zombie_Lurker

    Zombie_Lurker

    Messages:
    30
    Likes:
    119
    USA
    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.
     
    -Jessie-, Mary, Aroa and 12 others like this.
  10. Strawberry

    Strawberry Senior Member

    Messages:
    618
    Likes:
    1,011
    Seattle, WA USA
    Wow, great information! I need to write this down. AND USE IT.

    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?
     
    Mary, Aroa, MEMum and 9 others like this.
  11. Ben Howell

    Ben Howell OMF Correspondent

    Messages:
    497
    Likes:
    4,724
    U.K.
    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 :)
     
    justy, Gingergrrl, Mary and 15 others like this.
  12. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    7,101
    Likes:
    15,508
    USA
    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).
     
    Last edited: Feb 18, 2017 at 12:33 AM
    Mary, MEMum, TreePerson and 7 others like this.
  13. TrixieStix

    TrixieStix Senior Member

    Messages:
    162
    Likes:
    230
    I am in the same situation as you right now. I had my first ever appt at OMI last month. So happy to be getting the in-depth testing done. Just that alone feels like a big push forward.
     
    Gingergrrl, Ben Howell, Mary and 12 others like this.
  14. TrixieStix

    TrixieStix Senior Member

    Messages:
    162
    Likes:
    230
    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 ;)
     
    Sushi, Aroa, merylg and 1 other person like this.
  15. Sasha

    Sasha Fine, thank you

    Messages:
    15,133
    Likes:
    36,235
    UK
    If you set it up on US Amazon, it prompts you every time to see if you want to donate, I think.

    I suspect OMF can't set up on UK Amazon because it's not a UK charity, but I could be wrong.
     
  16. Rose49

    Rose49 Senior Member

    Messages:
    202
    Likes:
    4,883
    We are looking into becoming a UK charity. I hope we can!
     
  17. Sasha

    Sasha Fine, thank you

    Messages:
    15,133
    Likes:
    36,235
    UK
    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.
     
  18. TreePerson

    TreePerson

    Messages:
    39
    Likes:
    117
    U.K.
    Hi @Gingergrrl I hope you don't mind me asking what it is they think you have now? If not ME/CFS?
     
  19. Jenny TipsforME

    Jenny TipsforME Senior Member

    Messages:
    548
    Likes:
    1,475
    Bristol
    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.
     
    Jennifer J, Sushi and AndyPR like this.
  20. AndyPR

    AndyPR I'm a DAD, I Donate, Advocate and Demonstrate

    Messages:
    1,312
    Likes:
    7,995
    Hampshire, UK
    They would need to be a UK registered charity by the look of it
    From https://www.gov.uk/payroll-giving
     

See more popular forum discussions.

Share This Page