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    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 (FM), 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!

Riley

Senior Member
Messages
178
Girl Scout Cookies
I hope this isn't too off topic, but I thought @Ben Howell might find it funny.

A friend of mine lives in an apartment next to a whole foods (upscale grocery store). One day she was walking past the dumpster behind the whole foods and spotted about twenty unopened boxes of thin mints (girl scout cookies) in the dumpster.

Yeah...they're in her freezer now.
 

Cohen2

Senior Member
Messages
119
Location
New Zealand
Thanks for sharing your journey with us Ben. I have really been enjoying following your updates. I haven't been able to post till now because I have been so unwell. I hope you get you get your 5% improvement, but preferably more.
 

Ben H

OMF Volunteer Correspondent
Messages
1,131
Location
U.K.
Amazing privilege tonight to be able to sit and listen to these guys talk! So much smarts!

IMG_1135.JPG


Left to right:

Wenzhong Xiao, Ron Davis, some nutter, Ron Tompkins, Michael Mindrinos.

(All members of Scientific Advisory Board except Michael who consults, and myself ofcourse!)

B
 
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Never Give Up

Collecting improvements, until there's a cure.
Messages
971
Amazing privilege tonight to be able to sit and listen to these guys talk! So much smarts!

View attachment 19518

Left to right:

Wenzhong Xiao, Ron Davis, some nutter, Ron Tompkins, Michael Mindrinos.

(All members of Scientific Advisory Board except Michael who consults)

B
You're standing! What a great moment! Thank you for sharing.

In a police line up, could I pick out the ME patient? Absolutely! The parent of an ME patient? Yup.
 

Ben H

OMF Volunteer Correspondent
Messages
1,131
Location
U.K.
You're standing! What a great moment! Thank you for sharing.

In a police line up, could I pick out the ME patient? Absolutely! The parent of an ME patient? Yup.

Yes-very briefly. Ive been on Saline IV and upped dose of klonopin and think they help marginally, and also using a cane for any movement which helps a lot! Otherwise lying down most of the time. I wanted to stand for this photo. :)


B
 
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Comet

I'm Not Imaginary
Messages
693
Amazing privilege tonight to be able to sit and listen to these guys talk! So much smarts!

View attachment 19518

Left to right:

Wenzhong Xiao, Ron Davis, some nutter, Ron Tompkins, Michael Mindrinos.

(All members of Scientific Advisory Board except Michael who consults)

B
This is a most excellent adventure! So glad to see you standing @Ben Howell! How are you feeling?

Nutter = hero who stands among heroes, right? :):cool::angel:
 

Ben H

OMF Volunteer Correspondent
Messages
1,131
Location
U.K.
This is a most excellent adventure! So glad to see you standing @Ben Howell! How are you feeling?

Nutter = hero who stands among heroes, right? :):cool::angel:

Hey @Comet

I am better than in the UK- have upped my klonopin dose, having Saline IV and using a cane-but im still extremely weak and feeling v 'toxic'. The environment here is wonderful and a combination of the above is helping-for example I am able to go and lay down on the sofa downstairs for a few hours which was inconceivable at home :) and have had the odd evening sitting up. Plus Janet keeps me laughing which is good ;)

B
 
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Jill

Senior Member
Messages
209
Location
Auckland, NZ
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
 

Neunistiva

Senior Member
Messages
442
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.
 

mrquasar

Senior Member
Messages
358
Location
Houston, TX USA
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.

I am so sorry you are having such a hard time. I live next to a medical center so I hear sirens throughout the day. Usually I can tolerate it but when I'm feeling really bad they make me feel like I'm going to lose my mind. :mad:
 
Messages
97
Location
San Francisco, CA USA
Not sure whether I'm getting a bit withdrawn from not being around people but I feel immensely proud reading this. Even though I don't know either @Ben Howell or @JaimeS

Well done anyway, it's great hearing about your trip, very inspiring !

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. :thumbsup:
 

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. :thumbsup:
Thank you so much! We use Amazon Smile for OMF too. We order so much more now with Whitney to care for and all the stuff he needs. The more people do this it will really add up!
 

Gingergrrl

Senior Member
Messages
16,171
Thank you so much! We use Amazon Smile for OMF too. We order so much more now with Whitney to care for and all the stuff he needs. The more people do this it will really add up!

I've been using Amazon Smile for OMF since 2014 and have used it for literally everything b/c we had to start from scratch when we lost all of our belongings to mold. It's a super easy way to contribute to OMF with each purchase that you'd be making anyway. Glad you mentioned it Kristen to remind people!
 

Daisymay

Senior Member
Messages
754
Thank you so much! We use Amazon Smile for OMF too. We order so much more now with Whitney to care for and all the stuff he needs. The more people do this it will really add up!

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.
 

dangermouse

Senior Member
Messages
430
Hey guys,

Just to say I am so touched by your wonderful messages on here and making this such a cool thread. Seriously, what an amazing bunch of selfless people we have on here, and full of hope.

Sorry I didn't post last night. Crashed fairly hard after Saline (sleepy) and a crazy long day and tons of blood tests.

Anyway...




Part 4:

Im in bed with Janet. Don't worry-I got the go ahead from Ron. Yikes, that makes it sound even worse :D Hmm...Lets backtrack!

So my days so far are pretty standard since being in California, except from waking at 4am for whatever reason-time zone difference, whatever.

Im in bed all day as per usual, but I have a lovely view of all the extensive foilage in Palo Alto from our room, and the rain outside is pretty soothing. My heart yearns be out and about seeing the town and San Francisco, but its just not feasible for me, but I counted on that being the case. So I 'rest' all day in bed as per usual, and when Janet awakes from her shifts from Whitney mid afternoon we chat.

This time I got a text invitation to their bedroom! Bit forward-I've only been here 4 days and strike 1! Joking aside, Ron had come back from the lab and Janet catches up with the progress from the day as she wakes up.

So I was invited to join and listen to the progress, while lying in their very comfy bed. I couldn't help but notice the huge number of toy pandas in the room, but I need to follow up on that. Made me chuckle.

Ron preceeded to talk about the days progress, with Janet and myself avidly listening. It is truly mesmerising listening to him. Many times I have wished I were a fly on the wall, but this was for real. I was there in person.

And WOW. The research they are doing is mind boggling. The team at OMF and at the Stanford Genome Centre is exceptional, and is so advance, meticulous and dare I say ahead of the game, one cannot help being optimistic.

We should hopefully have a live webinar later this month, and Ron will be talking about the research then. But, as much as my addled mind can take in, I can tell you-we are in for a wild ride.


B
You are inspirational & brave to make the journey, I really do hope all goes well for you. How wonderful of Janet & Ron to have you stay. I'm having fingers firmly crossed for the research that Ron is doing. I'm in the UK and for ten years have struggled with ME. I have also developed Microvascular Angina for which I can (thankfully) tolerate Ranolazine, I couldn't tolerate Beta Blockers etc as my BP dropped way too low. Good luck.
 

dangermouse

Senior Member
Messages
430
Part 6:



"I know you are not going to be able to fix me. If you managed to give me 5%, I would be over the moon". These were my opening words to Dr Chheda, my physician at OMI. Actually I tell a lie-I said hi first.

Im clearly pretty forward about expectation now and managing it. Not pessimistic but realistic I like to think. My wife says I am demanding with Drs, and I am-probably extremely so-but that comes from the bullshit and total lack of help that all of us have experienced sometime in our journey. So, I like to be upfront about stuff.

The building OMI is in is pretty discrete to my eyes, and smaller than I thought. The receptionist was polite as I checked in and was informed there was a wait. Turned out to be about 40mins which is pretty difficult upright for me now, but whatever-I tend to see this-in a good clinic-as a sign that the Dr is taking extra time for good reason with the patient, and not just playing tiddlywinks.

I was called in and given a room with a reclining Drs table which was a welcome relief. I met Dr Chheda as described as above, and we went about going through my ENTIRE health history verbally, despite having my full notes sent prior. This was absolutely exhausting, but I appreciated the attentiveness and details that I may have missed.

I had question after question, and theory after theory. Dr Chheda listened to them all, without ever interrupting me once. Even when repeating myself and forgetting where I was midway through a sentence. Perhaps its because I'm used to the UK establishment, and moronic Drs, but this has never happened before. We were working together, rather than the usual one-up-ness I almost always encounter in the UK medical system.

At this point comedy gold occurred courtesy of Janet. She called me towards the end of the appointment whilst I was still with Dr Chheda and I answered, unsure if it was an important message or whatnot. She was also on loud speaker....

"Hey where are you?" she said. "Im actually still in the appointment Janet-Is everything okay?" I replied. "WHAT?! That is a long time. Tell her to MAKE SURE SHE FIXES YOU!!"

No pressure Dr Chheda. I was almost crying with laughter and Dr Chheda was grinning too.

The full appointment lasted over 2 hours, and I left with a bunch of options, plus considerably less blood for all the testing. Thats the key thing here-options. The ability to try different things. Its much, much more than the NHS have ever given me.

Here's hoping for that 5%.

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.
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
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.
 
Messages
2,125