Ben and Claire's adventure to Davis-Dafoe land!
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This is Ron's research! That is the goal! Donate to OMF! The money funds his research! The point is to figure out the cause and find a treatment/cure. That is what he is doing. The test right now is a way to differentiate between CFS and other disease or healthy and find treatments that, when added, the cells don't die under stress. This is a progress report. It's not finished yet. He works on it every single day.
More money will enable it to go faster.
More money will enable it to go faster.
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@Rose49 my sister is in remission (previously severe) and I'm currently quite bad (in the past I've had decent phases of almost-remission). This maybe of interest? We're in the UK though, you probably have similar siblings nearby.
My sister is coming here later today to care for me, which is a weird thing when I think back to how weak she was. Also that there's an element of randomness/spontaneity even without intelligent medical care, we don't necessarily get stuck like this forever.
@Ben Howell this is definitely the best thread on PR at the moment.
My sister is coming here later today to care for me, which is a weird thing when I think back to how weak she was. Also that there's an element of randomness/spontaneity even without intelligent medical care, we don't necessarily get stuck like this forever.
@Ben Howell this is definitely the best thread on PR at the moment.
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I'm sure they'd want your blood if you were closer! Hang in there! So glad your sister is better!
HI @Rose49, just another thought here - definitely relevant to the UK, but doubtless elsewhere. Yes, absolutely, finding the cause and thereby treatment is without doubt the holy grail of what Ron and his researchers are striving so hard towards. There is also however another crucially important intermediate goal, that could improve the lives of ME sufferers considerably, even before cause/treatement are discovered - a way of clearly demonstrating to the medical professional and authority-figure disbelievers that ME's persistance is biological in nature, so ME sufferers at least get treated with the respect they deserve. This would be a huge step forward.
Are you saying that Ron's test is very close to that point?
EDIT: Please do not mistake this for hassling you in any way! Just cannot help being interested. But no pressure, truly.
Are you saying that Ron's test is very close to that point?
EDIT: Please do not mistake this for hassling you in any way! Just cannot help being interested. But no pressure, truly.
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Agree Barry, so many in the UK and elsewhere do not have the option of seeing private doctors and our NHS and benefit system treat us appallingly. Patients, including children, continue to be adversely affected by GET daily, many becoming severe because of it. We even have difficulty accessing treatment for other non-related medical conditions. Sadly, to me proving the illness is real is equally as important to finding treatments. We are so desperate to be believed and treated with respect, and to STOP THE HARM 
Sending more love to all, it's so wonderful to follow this exciting adventure with you all. I keep being moved to tears, I cried when you said how friendly the medical staff were at Stanford, that is a dream for many of us.
Wouldn't it be wonderful if there was enough money for an additional team to work on developing the test, while Ron concentrated on the cure?
Sending more love to all
, it's so wonderful to follow this exciting adventure with you all. I keep being moved to tears, I cried when you said how friendly the medical staff were at Stanford, that is a dream for many of us. Wouldn't it be wonderful if there was enough money for an additional team to work on developing the test, while Ron concentrated on the cure?
Too funny!!!
Hey @Jan
Hopefully you can have hope through Ron, the Genome centre and OMF. I truly know how you feel coming from the UK and address this somewhat in an upcoming post.
And yes! More money for Ron means the quicker he can focus on getting to a cure-he is incredible at building the right team around him. Donating to OMF is a way to facilitate that
B
Agree Barry, so many in the UK and elsewhere do not have the option of seeing private doctors and our NHS and benefit system treat us appallingly. Patients, including children, continue to be adversely affected by GET daily, many becoming severe because of it. We even have difficulty accessing treatment for other non-related medical conditions. Sadly, to me proving the illness is real is equally as important to finding treatments. We are so desperate to be believed and treated with respect, and to STOP THE HARM
Sending more love to all, it's so wonderful to follow this exciting adventure with you all. I keep being moved to tears, I cried when you said how friendly the medical staff were at Stanford, that is a dream for many of us.
Wouldn't it be wonderful if there was enough money for an additional team to work on developing the test, while Ron concentrated on the cure?
Sending more love to all
, it's so wonderful to follow this exciting adventure with you all. I keep being moved to tears, I cried when you said how friendly the medical staff were at Stanford, that is a dream for many of us.Wouldn't it be wonderful if there was enough money for an additional team to work on developing the test, while Ron concentrated on the cure?
Hopefully you can have hope through Ron, the Genome centre and OMF. I truly know how you feel coming from the UK and address this somewhat in an upcoming post.
And yes! More money for Ron means the quicker he can focus on getting to a cure-he is incredible at building the right team around him. Donating to OMF is a way to facilitate that
B
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%.
"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%.
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@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 @Rose49 for your answer, "soon" always sounds good
I don't want to go too far off topic from Ben's adventures but I was thinking that if a "healthy control" tests positive that it can also be an ME patient that just wasn't hit by symptoms yet, does that sound weird?
I don't want to go too far off topic from Ben's adventures but I was thinking that if a "healthy control" tests positive that it can also be an ME patient that just wasn't hit by symptoms yet, does that sound weird?
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Thanks for sharing your Adventure Ben.
Having emigrated from the UK and now living in Mountain View, your story of having to come to Stanford and OMI in Mountain View to get tested makes me realise how lucky I am to have such resources near by.
I believe the way forward for research is NOT to follow how things were done in the past. Forget the large expensive studies - too slow, too limiting, too expensive. Given how devastating ME/CFS is it needs fast action. We desperately need a test. That will open up funding. Technology and computing now offers new ways of looking at problems. Focus on the severe cases and find out what is different with them from healthy controls. Look at what is wrong with their energy cycle. From what I understand that is what Ron is doing!
Your posts spurred me into action and I have just donated to the OMF!
The UK does have Dr Myhill. Have you tried her ATP profiling tests? No lab in the US offers those, and she only accepts UK patients.
Good luck with your journey and finding that 5% (hopefully more).
Dennis
Having emigrated from the UK and now living in Mountain View, your story of having to come to Stanford and OMI in Mountain View to get tested makes me realise how lucky I am to have such resources near by.
I believe the way forward for research is NOT to follow how things were done in the past. Forget the large expensive studies - too slow, too limiting, too expensive. Given how devastating ME/CFS is it needs fast action. We desperately need a test. That will open up funding. Technology and computing now offers new ways of looking at problems. Focus on the severe cases and find out what is different with them from healthy controls. Look at what is wrong with their energy cycle. From what I understand that is what Ron is doing!
Your posts spurred me into action and I have just donated to the OMF!
The UK does have Dr Myhill. Have you tried her ATP profiling tests? No lab in the US offers those, and she only accepts UK patients.
Good luck with your journey and finding that 5% (hopefully more).
Dennis
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.
Thank you for your wonderful posts and sharing all this with us. I'm so happy you had this appointment, what excitement and hope you must be feeling. Here's to options, and even better yet, a bunch of options, your 5% @Ben Howell and hopefully much more!
@Rose49, thank you for sharing, keeping us updated and responding to our questions. Much love, and gratefulness beyond and deeper than anything I can express with words, to you and your family (our hearts are with you, we love you), and gratefulness for everyone at OMF and OMI, too! Thank you!
Thank you for your wonderful posts and sharing all this with us.
I'm so happy you had this appointment, what excitement and hope you must be feeling. Here's to options, and even better yet, a bunch of options, your 5% @Ben Howell and hopefully much more! @Rose49, thank you for sharing, keeping us updated and responding to our questions. Much love, and gratefulness beyond and deeper than anything I can express with words, to you and your family (our hearts are with you, we love you), and gratefulness for everyone at OMF and OMI, too!
Thank you!
Ladybird books were part of my childhood in New Zealand. They are little books for children learning to read. One might start:
Ben and Claire go on a plane.
They are going to Ron and Janet's house.
Here is Janet.
'Hello', says Ben.
'Hello', says Claire.
'Hello', says Janet....
While I was looking for an example for you, I found some Ladybird books written for adults that looked rather appealing.
The Ladybird Book of Mindfulness
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.
Ben and Claire go on a plane.
They are going to Ron and Janet's house.
Here is Janet.
'Hello', says Ben.
'Hello', says Claire.
'Hello', says Janet....
While I was looking for an example for you, I found some Ladybird books written for adults that looked rather appealing.
The Ladybird Book of Mindfulness
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.
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While this test is super interesting to us all (and I'm sure Ron will tell us more as soon as he can), let's keep in mind that this is Ben and Claire's "adventure" thread. We get to come along for the fascinating ride, but it isn't the place to discuss research. There are other threads for that.
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As a patient of Dr. Chheda's for a year, I did get a 5% improvement. One always hopes for recovery, but considering my health was in the decline at the time, a 5% improvement was a substantial increase in quality of life.
I hope you experience 5% and more!
I hope you experience 5% and more!
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Thank you @Rose49 for clarifying and I did not know that donating to OMF was the same as donating to this specific blood test that Ron is working on. Even though you are calling it a "Progress Report" and "Not finished yet" I was hoping there might be a way that we could donate specifically to this test which distinguishes CFS from other diseases (and maybe we could make the donations in honor of Ben & Claire's trip?) as I know many are so interested in finding a way to help move this particular test and piece of the research forward and more money will enable it to go faster like you said.
Jen, I had absolutely no idea what a "ladybird" book was either (except for Ladybird Johnson the former president's wife) but felt too stupid to ask! Am glad you asked so others could explain it!
Jen, I had absolutely no idea what a "ladybird" book was either (except for Ladybird Johnson the former president's wife) but felt too stupid to ask! Am glad you asked so others could explain it!
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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.