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

liverock

Senior Member
Messages
748
Location
UK
@Ben Howell
Thanks Ben, for taking so much time and effort to keep us all informed of your experiences and the ongoing research that Ron is working so hard on.

Here's to you being able to take a walk across the Golden Gate Bridge next time you visit Davis-Dafoe land!:thumbsup:

 

Jan

Senior Member
Messages
458
Location
Devon UK
How I will miss your witty, heartfelt updates, it's been such a ray of hope reading this thread. Your descriptions of Janet and Ron are exactly how I'd imagined them, the kindness, love, compassion and ceaseless work to find a cure and care for their precious son, whilst maintaining the sense of humour necessary to survive it all. Both Janet and Ron's posts and tweets are always unmissable treats!

Thank you Ben, I think we all feel closer to both you, and to this truly amazing family endlessly battling for us all and for dear Whitney. I pray for the day when Ron is able to fully enjoy retirement and both Janet and Ron can finally rest :heart::heart:
 

dangermouse

Senior Member
Messages
430
@Ben Howell I've really looked forward to and enjoyed these updates. It's been a highlight in my week and provides hope. So thankful to you for doing this and to Ron & Janet. I dearly hope that Whitney (and all ME patients) can benefit from a treatment and better understanding in the near future.
 
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Aroa

Senior Member
Messages
109
Location
Spain
This was such a wonderful thread !!!

It was a pleasure to read it and to share it with the community.

and the way you wrote it made us feel it very real and near. We had the chance to know more about the Davis-Dafoe family and I feel it is such an honor and priviledge to have Ron and Janet working for us !!!!

Yes we love them a lot :heart:
 

jess100

Senior Member
Messages
149
Yes. That is happening very soon.
I was treated by Dr Kaufman at OMI a few yrs ago and consider myself to be almost normal now. However, I never suffered like Whitney or Ben and many others here. I was dx with anaplasmosis, babesia, bartonella, Epstein-Barr and a few other viruses.
That said, if it will be at all useful to Ron's research to test my blood I would return to Ca and do it. If you are keeping any kind of list you can add me to it.
 

jess100

Senior Member
Messages
149
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.
So true!! This is NOT the way we are usually treated by doctors. Ridiculed, or dismissed or given a prescription for something we don't have because the doc wasn't listening to us at all.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Unfortunately no. Whitney can't tolerate hardly anything. He can't even tolerate us, but no choice. We have to hook up his food, take out pee, (et al), and fix covers, etc. we tiptoe and don't touch him. No sound. Eyes covered. His schedule is now keeping me up till 8-9 am, so I sleep in day and then get to hang out with Ben and Claire. So nice. Who's next???

Its going to be so amazing to him when he comes out of this.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
I had exactly the same thought @Ben Howell . The energy you put into facilitating communication, the promptness with which you reply to queries and the good humour and calm that you do it all with is impressive. That you can do that while being so ill, well, it's a great credit to you and also to Claire who obviously supports you so well.

unfortunately too any are judgeing how bad others ME is based on if they can communicate or not. Its like a myth in our community that if a person can communicate they cant be too bad (Ive been wrongly judged quite often due to that). There are lots of us who can communicate but can hardly do anything physical at physical and require a lot of care.

Sometime communication may be all a person with ME may be doing and that is being harder then it looks.
 

Jill

Senior Member
Messages
209
Location
Auckland, NZ
Thank you Ben for bringing us all closer to Ron and Janet through your writing. I can just imagine being there . I just hope and pray for the day their dear Whitney is back with them in all senses of the word. Imagine what sort of guy he is with such inspiring parents .
I truely hope the omi can find some treatment that is both affordable and helpful for you - even 10% is a lot when in your state. That comment has stayed with me - I think fluge said it - it was then I totally believed they understood the enormity of this illness . Take care , Jill
 

lilpink

Senior Member
Messages
988
Location
UK
Edited to add: For the avoidance of doubt, the linking of Ladybird books to Ben and Claire's adventures was not, I am sure, a commentary on Ben's writing style. It is mainly that Janet was a big player in the happenings in Ladybird books, although she was usually in the company of John, rather than Ron.

Janet and John and Ladybird Books are not one and the same. J&J were used mainly in schools in the 1950s & 1960s as a formal reading scheme. Ladybird Books had a very different 'look' about them and (at least as far as my 1960's UK education was concerned) were used more as supplementary / bedtime reading / personal-enjoyment reading books when compared with the Janet and John scheme which required you to move through distinct stages. I do remember being quite excited when I moved from 'very big print' Janet and Johns to 'much smaller print' Janet and Johns ;)
 

Jenny TipsforME

Senior Member
Messages
1,184
Location
Bristol
Its like a myth in our community that if a person can communicate they cant be too bad

I can see where this comes from. I've had relapses when I can't read, the lines of text aren't straight and I can't concentrate and the brainfog is constant. Months can go by in a haze. It was a significant barrier to accessing ideas that might help. There was no way I could access Phoenix Rising.

Other times I think I sound quite functional in internet communication but in a sense I only exist as online communication. I'm lying in bed not doing anything else (actually a bit like right now I'm in bed with virally symptoms). To you this probably won't sound any different from moderate times when I'm also doing other things offline.

I imagine that at a biological level phases when cognitive function is much better than physical are different from when both are bad?
 

lilpink

Senior Member
Messages
988
Location
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.

Not to mention the UK based 'evidence base' that would arrive with OMF *if* this happened. Harder for NICE to ignore non Royal Colleges 'research' when they develop their new guideline.
 

Jenny TipsforME

Senior Member
Messages
1,184
Location
Bristol
Not to mention the UK based 'evidence base' that would arrive with OMF *if* this happened. Harder for NICE to ignore non Royal Colleges 'research' when they develop their new guideline.
@Ben Howell does OMF getting charity status here mean OMF would have a physical research outpost in the UK, or would it be simply administrative so we can donate money more easily?