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

[Sasha]

it was filmed last Monday and likely will be out on Monday or Tuesday. Ashley has been editing it to put in his slides.

Thanks, Janet! How exciting!

 

[FTY]

Something very special going on here. Tears as I read and a real sense of " profound connection" as @Rose49 said. It's a rare commodity and if Me/cfs has brought anything of value, it is this. Not that I want any of us for any reason to have this wretched illness, and I long for Ron's efforts to be translated into treatments, but somehow the connection feels a precious rare gift. Also the gift of hope in the arid landscape that is the world of ME.
Thank you @Ben Howell for your descriptions when you must be feeling exhausted, to Claire, and for Janet and Ron's never ending commitment in the search to cure Whitney, Ben and us all.
Will make another donation today.

I'm a bit behind on this thread, not been online for a couple of days but just wanted to more than 'like' this post - so feeling it! xxx

 

[justy]

Thanks for the latest update Ben - my functioning level is about the same as yours, so I know you must be really pushing it with all these meetings, appointments and meeting new people. Thanks for all you are doing for the community.

Oh, and nice to see Claire is a real person!

 

[AndyPR]

Oh, and nice to see Claire is a real person!

"Claire" is a very real person but tends only to be seen at weekends.....

 

[justy]

"Claire" is a very real person but tends only to be seen at weekends.....

HAHA! Its the Michael and Janet Jackson conspiracy all over again.

 

[valentinelynx]

I left with a message of hope-literally, with Craig Heller saying 'we're gonna figure this out'.

Hee hee. It's hard for me to think of Craig Heller without remembering him as the biology professor at Stanford, when I was an undergrad (years before I became ill), who would lock the door when class had started, so latecomers couldn't get in. This was one of those classes of a few hundred people... he was a "hard-a$$!" I hope he applies the same severity to his work on this disease!

 

[Seven7]

Meeting of minds

Respectfully: You have such a lovely warm face, your smile is contagious! TX for the updates!
I have a question,
I am more like relapse remitting type. And if I would not take vasoconstriction I would be bed ridden, I might be consider mild since I respond to the Dysautonomia meds (florinef + midodrine + beta blocker), but without them I would be in bed, So has anybody explain or it make sense why we can function with this drugs and if it matches the theory of what we have wrong going on?? I guess if we cannot produce something but then when we add this drugs somehow we function at a higher level???

I have ME for sure, I am one of Dr. K group patients (I have low NK activity and all other issues)....

 

[Learner1]

Thank you very much for sharing your adventure with us. It's so nice to hear real humans are working on this!!

I've been thinking about going to the Bay Area and been trying to understand who is doing what. I'm hoping you'll be able to tell us what a patient can expect to come away with from OMI or the Gordon Clinic, maybe in a summary at the end of your trip.

Regarding the research, i have a question....

(I have low NK activity and all other issues)....

I'm doing ultraviolet blood irradiation with ozone, which is supposed to stimulate NK activity. Is anyone there looking at this in combination with other immunomodulating techniques?

Many thanks!

 

[Seven7]

with other immunomodulating techniques?

I forgot to say I am on those too: but they do not raise me from bed per say: Immunovir + LDN: LDN 9mg/ day finally raised my numbers ( which I had low too)

 

[Ben H]

Thanks for the latest update Ben - my functioning level is about the same as yours, so I know you must be really pushing it with all these meetings, appointments and meeting new people. Thanks for all you are doing for the community.

Oh, and nice to see Claire is a real person!

Hey Justy. Yes I have been pushing it and promptly crashed badly a couple nights ago so resting up. I think a combination of saline and doubling dose of klonopin has helped me be able to go out to these meetings etc.

"Claire" is a very real person but tends only to be seen at weekends.....

HAHA! Its the Michael and Janet Jackson conspiracy all over again.

Respectfully: You have such a lovely warm face, your smile is contagious! TX for the updates!
I have a question,
I am more like relapse remitting type. And if I would not take vasoconstriction I would be bed ridden, I might be consider mild since I respond to the Dysautonomia meds (florinef + midodrine + beta blocker), but without them I would be in bed, So has anybody explain or it make sense why we can function with this drugs and if it matches the theory of what we have wrong going on?? I guess if we cannot produce something but then when we add this drugs somehow we function at a higher level???

I have ME for sure, I am one of Dr. K group patients (I have low NK activity and all other issues)....

Thanks Inester7.

I can't answer that specifically. But Prof Davis's video will be out soon which will give updates on the research

 

[valentinelynx]

Thank you very much for sharing your adventure with us. It's so nice to hear real humans are working on this!!

I've been thinking about going to the Bay Area and been trying to understand who is doing what. I'm hoping you'll be able to tell us what a patient can expect to come away with from OMI or the Gordon Clinic, maybe in a summary at the end of your trip.

Regarding the research, i have a question....



I'm doing ultraviolet blood irradiation with ozone, which is supposed to stimulate NK activity. Is anyone there looking at this in combination with other immunomodulating techniques?

Many thanks!

Hmm. From what I can tell, ultraviolet blood irradiation, with ozone (is that one thing or two?) are two "alternative medicine" techniques with little to no support in the scientific literature. OMI does not practice alternative medicine, but Gordon Medical Associates does, in spades, including "Frequency Specific Microcurrent", and something called "Prolozone" that involves a local anesthetic, homeopathic doses of steroids (?) and ozone. I've heard good things about Gordon Medical Associates, if only that that they support good research on ME/CFS, so if your predilection is more toward the alternative medicine approach, you might prefer to see them. OMI will diagnose and treat you for dysautonomia, mast cell activation syndrome, infections, including Lyme and bartonella, autoimmune issues, and, I'm sure many other things I'm unaware of, but the approach is Western science-based medicine. Albeit with an open mind (they aren't IDSA followers in treating Lyme, for example).

 

[Learner1]

Thanks @valentinelynx for the info on OMI and Gordon Clinic. I am fervently hoping that there's somewhere that is synthesizing ALL the techniques that may help us.

I've found zero help from Western medicine up here in Seattle - they just tell me to see a psychiatrist to learn to cope better.

My naturopath has found having people on rotating antibiotics/antivirals over long periods damaged people, so tries to balance them with other modalities. I was hoping for any more insight that could come out of the Bay Area.

Hmm. From what I can tell, ultraviolet blood irradiation, with ozone (is that one thing or two?) are two "alternative medicine" techniques with little to no support in the scientific literature.

They are not at all alternative, just lost on the shuffle in the age of Big Pharma. Actually there is plenty of research on UVBI and ozone:

http://drsubi.com/bpt/short-history/

https://www.ncbi.nlm.nih.gov/pubmed/26092299

http://www.whale.to/a/rowen.html

RE: prolozone - I found it quite effective, for neck, back, and leg pain after a serious car accident. (Far preferable to opioids.) Homeopathy was not involved at all.

Just hoping for a complete box of tools to use to cure all of us...

 

[Gingergrrl]

HAHA! Its the Michael and Janet Jackson conspiracy all over again.

Thanks @justy and that cracked me up! But it was great to see a picture of the real Claire! Am thrilled with how well your trip is going, @Ben Howell, and enjoy reading the updates and seeing all of the pictures. Hope you guys are staying dry from all the rain!

 

[Jhillzer07]

We got there ok! But yea...those freeways


B

That's so cool! Sorry the sun is hiding, hopefully it comes out before you head home. So nice to talk to you guys today!

 

[Ben H]

That's so cool! Sorry the sun is hiding, hopefully it comes out before you head home. So nice to talk to you guys today!

Yea, hopefully buddy! Apparently its unusual...

Great to talk you too!


B

 

[Ben H]

Research update (video) with Ron folks! :

http://forums.phoenixrising.me/inde...e-cfs-research-with-ronald-w-davis-phd.49408/


B

 

[Hilary]

Thank you so so much for this - it is difficult to describe how much it means to hear about the fantastic work being done and helps in the effort to hang on to hope. @Ben Howell thank you for all you do for the community and please pass on grateful thanks to Ron Davis and his team.

 

[Seven7]

The video is out
http://www.openmedicinefoundation.o...nald-w-davis-phd-an-update-on-mecfs-research/

 

[Gingergrrl]

I haven't watched the videos yet but is the one that Ben linked different than the one that lnester linked (or are they the identical)? Thanks in advance to anyone who has watched!

 

[JaimeS]

Sorry for my long silence -- so, so much going on!

@JaimeS did you get assigned the bench work you were after?! ( this is a reference to note on whiteboard in the pic...)

Yes! I had to go through some lab training before I could work on pipetting and with biological materials at all -- that is now done and I'm learning various things. I should also say that the assay Ben mentions -- I had it right before he did, and lo and behold -- I tested positive as well. So the test is positive for patients from minor all the way up to severe. Useful! Far from ready for widespread use, though. Sorry folks. I know how desperate we all are for a simple diagnostic test, but a lot more work must be done before we are sure it will serve, and three patients isn't conclusive. I am doing some hands-on stuff with this assay tomorrow.

Am so jealous that you got to meet my no.1 bae @JaimeS - so happy she is doing better!

Justttyyy my symptom-twin! I'm sorry you're not feeling well.

As always, the love here on PR is awesome. It's been great to meet Ben, who is just as kind and lovely as he sounds.

[Edit: I altered 'diagnosis' above to 'testing positive' and attached a few more qualifiers... I get very excited about the work we're doing, but I don't want to over-state/over-promise work in its early stages.]