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

[Gingergrrl]

Donations to OMF go directly to Ron's research. He is an amazing scientist and is motivated by Whitney's and all patients' suffering to get treatment ASAP. This is the #1 goal. This thread is about Ben's trip. I'm not planning to respond to questions about the science on this thread any more. Ron's talk video soon will give more info. Just know that your very generous donations will help him make progress sooner.

Am sorry and I wasn't asking about the science of it (I'd never understand it anyway!) and was trying to figure out a way to donate to this particular test in Ben and Claire's honor to support this piece of research that was new to me. Ron's work is what often motivates me to stay alive and I've been donating to OMF along with my entire family since 2014 and will continue to do so. I thought this was a separate test that we could donate toward. I misunderstood and apologize sincerely if I said the wrong thing!

 

[Janet Dafoe]

Am sorry and I wasn't asking about the science of it (I'd never understand it anyway!) and was trying to figure out a way to donate to this particular test in Ben and Claire's honor to support this piece of research that was new to me. Ron's work is what often motivates me to stay alive and I've been donating to OMF along with my entire family since 2014 and will continue to do so. I thought this was a separate test that we could donate toward. I misunderstood and apologize sincerely if I said the wrong thing!

Thank you so much for your donations!

 

[Gingergrrl]

Thank you so much for your donations!

Of course and they will keep coming. My sincerest apologies for focusing on that one test. Not another word about it from me and the last thing I would ever want is to upset you (if I did)? You are the ultimate mother, caregiver, fighter, in my eyes and I have nothing but admiration for you & Ron. This thread is now back on track and I will only be posting my good wishes for Ben & Claire.

 

[TiredSam]

Help me @TiredSam or anyone else. My poor brain, I can't figure out what a ladybird book is. The only lady bird I've heard of was the name of one of our (U.S.) x president's wife.

This kind of thing:

They can get quite exciting:

 

[Janet Dafoe]

Such a nice day with Ben and Claire! Lots of time talking with Ben. Claire cooked us all a lovely dinner, and then we went on one of my most frequent walks together: to CVS to pick up prescriptions. We are enjoying our time together so much!

 

[TiredSam]

Such a nice day with Ben and Claire! Lots of time talking with Ben. Claire cooked us all a lovely dinner, and then we went on one of my most frequent walks together: to CVS to pick up prescriptions. We are enjoying our time together so much!

I hope when you got back from your walk someone hadn't eaten all the porridge ...

 

[slysaint]

They are little books for children learning to read

AKA Janet and John books..:

...........if you're ever bored try the Terry Wogan ones

 

[DeceptivelySlow]

Such a nice day with Ben and Claire! Lots of time talking with Ben. Claire cooked us all a lovely dinner, and then we went on one of my most frequent walks together: to CVS to pick up prescriptions. We are enjoying our time together so much!

Thanks for sharing and great to hear how much you all are enjoying your time together! Kudos to you for turning a trip to the drugstore into as positive an experience as possible

 

[Sandman00747]

I stopped 90% of all my supplements several years ago. Do I feel any better or worse for it? NO! I have been regularly donating this money to something much more valuable than shaman supplements, Dr. Davis' research. I have great faith Dr. Davis will crack this mystery for Whitney, Ben, and all the rest of us tenacious souls hanging on for " the answer" and treatments. My greatest wish is for all of us to be able to feel like our old selves once again! And Ben I hope your wishes for 5% becomes 50%!

 

[Ben H]

This kind of thing:

View attachment 19504

They can get quite exciting:

View attachment 19505

I hope when you got back from your walk someone hadn't eaten all the porridge ...

AKA Janet and John books..:

...........if you're ever bored try the Terry Wogan ones

 

[geraldt52]

...I stopped 90% of all my supplements several years ago. Do I feel any better or worse for it? NO! I have been regularly donating this money to something much more valuable than shaman supplements, Dr. Davis' research...

+1. I wish we could convince everyone to do this. Stop them for a month, or two months, and donate what you saved.

We all like to think that we're just one supplement away from feeling better, but it is pretty obvious that we aren't, or a tremendous number of us would be better by now. Your body needs an occasional break from such things anyway...and I'm absolutely convinced that you're just as likely to feel better as feel worse.

 

[Valentijn]

We all like to think that we're just one supplement away from feeling better, but it is pretty obvious that we aren't, or a tremendous number of us would be better by now.

I'm several supplements away from feeling a lot worse and being much less able to function. Please don't try to guilt people into stopping the use of things which are helping them.

 

[geraldt52]

... Please don't try to guilt people into stopping the use of things which are helping them...

I wasn't trying to "guilt" people into stopping anything...I was suggesting that a "pause" in drugs/supplements is often wise in any event, and that things that people think may be helping them actually may not be. I am certain that the incredible plethora of things I've taken in the past have either been useless, or harmful.

I think the reason supplement manufacturers fight to the death to not be required to do double-blind testing isn't that it is so difficult or expensive, it's because overwhelming the things they sell simply don't do what they say they do.

Certainly everyone should do as they please, but I think money spent on supplements would largely be better spent on research.

 

[arewenearlythereyet]

I wasn't trying to "guilt" people into stopping anything...I was suggesting that a "pause" in drugs/supplements is often wise in any event, and that things that people think may be helping them actually may not be. I am certain that the incredible plethora of things I've taken in the past have either been useless, or harmful.

I think the reason supplement manufacturers fight to the death to not be required to do double-blind testing isn't that it is so difficult or expensive, it's because overwhelming the things they sell simply don't do what they say they do.

Certainly everyone should do as they please, but I think money spent on supplements would largely be better spent on research.

The problem with lack of supplement research is probably more due to a lack of patentable product design due to them being vitamins and minerals. Nobody has done blind trials because all the money is in medical patents and it's not worth their while. The eu and other regulatory bodies have also pretty much classified these as non food so regulation is light here as well. No manufacturer will test stuff unless they have to. they aren't charities?

 

[Ben H]

Part 7:


Girl Scout Cookies.

This evening was an absolute blast. I had upped my dose of klonopin and had a saline IV and this seemed to enable me to sit upright and come downstairs and take part and enjoy the evening that followed- dinner time with Janet, Ron, Ashley, Theo, Jaime and Claire!

So around 6:30pm, Jaime arrived with bundles of delicious smelling takeout. I forget where it was from, but it was delicious. It was on the spicy side of things which I love, but it was funny to see Janet utterly confused at how a piece of pickled purple ginger could be so hot!

Conversation was great. From slightly dark- Theo's wish to be cremated in a viking longboat and the heat generated to help forge a sword (it is clear is very proud of his Norwegian roots) to Jaime and I chatting CFS, to Girl Scout Cookies.

As a Brit, I found Girl Scout Cookies hilarious. "So you have cookies, that you can only buy at certain times of the year, and only from girl scouts?" I asked. "Yep. And people stockpile them too for when they aren't available" Theo replied. "Right. So you have to specifically seek out a Girl Scout, as a grown (wo)man, just for these biscuits-like drugs?" I said. "Yep. In fact one Girl Scout even started selling them outside a weed dispensary..." (10/10 entrepreneurial spirit)

Too funny. I still don't completely get it. Every time they are mentioned now I get mental image of frantic cookie junkies looking for their next fix, but being shit out of luck because its August

The evening was full of laughter and good conversation. I had not met Ashley or Theo before and they are really awesome. I've always admired Ashley for her activism in improving ME/CFS awareness and for her love and passion for Whitney. She does a huge amount behind the scenes for us for which I am so grateful. I admire Theo for his amazingly neat haircut and his quirky sense of humour! They also both have the cutest little dog called Frankie who came for this visit also. She is like a cross between a teddybear and an ewok, and found a home on my lap for some time. Awesome.

Anyway, it was wonderful and by far the most active time I have had in well over a year. Im glad I could spend it with such awesome people.

 

[Gingergrrl]

@Ben Howell I was so curious if you had girl scout cookies in the UK, and actually just asked a friend of mine who lives there, but you answered my question first without even knowing it! I just bought several boxes from my niece who is a girl scout as Valentine's Day gifts for others (b/c people will wait in line for HOURS especially for the "thin mint" cookies). The only kind I can eat now is the gluten free Toffee ones but they are not too bad LOL.

Am glad you all had such a fun dinner and it sounds wonderful.

 

[CFS_for_19_years]

"Yep. In fact one Girl Scout even started selling them outside a weed dispensary..." (10/10 entrepreneurial spirit)

Too funny. I still don't completely get it. Every time they are mentioned now I get mental image of frantic cookie junkies looking for their next fix, but it being shit out of luck because its August

Selling Girl Scout Cookies outside of weed dispensaries has been going strong for three years now:
https://www.google.com/search?q=girl scout cookies outside pot dispensary&ie=utf-8&oe=utf-8

Just FYI, there is a strain of cannabis called "Girl Scout Cookies" or GSC for short. Go Washington State, California (and a few other states), where all weed is legal!

 

[Janet Dafoe]

AKA Janet and John books..:

...........if you're ever bored try the Terry Wogan ones

This is hilarious! I wonder how a Janet and Ron book would go! LOL!

 

[Barry53]

This is hilarious! I wonder how a Janet and Ron book would go! LOL!

You really are a one for tempting fate aren't you?

 

[geraldt52]

This is hilarious! I wonder how a Janet and Ron book would go! LOL!

I sense a fundraiser coming!!!