Rose49 could you please ask OMF if they could set up a similar thing for Amazon purchases in the UK (and other countries) so we can all help?
Loving this thread, loving the love.
That would be so good, I order so many things from Amazon.
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Rose49 could you please ask OMF if they could set up a similar thing for Amazon purchases in the UK (and other countries) so we can all help?
Loving this thread, loving the love.
I sent an email to linda Tannenbaum asking about this. Great idea!That would be so good, I order so many things from Amazon.
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!Rose49 could you please ask OMF if they could set up a similar thing for Amazon purchases in the UK (and other countries) so we can all help?
Loving this thread, loving the love.
@Ben Howell Can you tell us a little more about Dr Chheda? Would you recommend her? I love that she was a great listener. Did she seem knowledgeable and empathetic (and not dismissive) as well?
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
Wow, @Ben Howell, what a company to be in. That you for all the updates.
Is klonopin something people can regularly take to feel better or is it just to be used in emergency?
I am severe. Yesterday there was some construction work being done, and there was a lot of noise for hours and the whole building vibrated. Despite wearing noise-cancelling headphones it destroyed me. I was crying all afternoon. I couldn't sleep. Almost lost consciousness. I'm wondering if it will help in such situations.
Wow what a difference to how ME patients (in my experience) are treated in the UK. I am beaming as I sit here. I'm slowly making my way through your story and I feel hope. Hope for everyone who has suffered with this awful illness for all these years and hope that ME will finally be recognised for what it really is.
Hi Ben, thanks for the laughter, the joy,the tears, the hope and the distraction.
Am so jealous that you got to meet my no.1 bae @JaimeS - so happy she is doing better!
Really hoping the treatment works out for you and you get at LEAST that 5% I was more than a little disappointed today to see that my journey for treatment has now left me at only 20% on the scale - I haven't looked at the scale in a long time and hadn't realised how much worse I had become again.
Have donated again in celebration of 'Ben and Claire at Ron and Janets'
P.S how is Claire in all this? Hope she is doing OK.
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!But I most likely have an issue with vasopressin which could help explain why (not retaining fluids).
Wow what a difference to how ME patients (in my experience) are treated in the UK...
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.
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.
Wow what a difference to how ME patients (in my experience) are treated in the UK.
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?
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?
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.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
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....so I sleep in day and then get to hang out with Ben and Claire. So nice. Who's next???
Wow, great information! I need to write this down. AND USE IT.
We are looking into becoming a UK charity. I hope we can!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.
We are looking into becoming a UK charity. I hope we can!
Hi @Gingergrrl I hope you don't mind me asking what it is they think you have now? If not ME/CFS?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 have not re: Ben or any other patient).
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.UK people who are taxpayers can give the same amount of money to a UK charity and have the govt add money onto it
They would need to be a UK registered charity by the look of itAs 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.
From https://www.gov.uk/payroll-givingCharities
The Payroll Giving Agency will pass on employee donations to you. You must:
There is nothing more to do as a charity. You can’t claim Gift Aid on Payroll Giving donations.
- be recognised by HMRC
- use the donation for charitable purposes