Jesse2233
Senior Member
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Hey everyone,
As promised, here's a synopsis of my time at Stanford. I'm sharing this to inform and inspire hope while also respecting certain aspects of confidentiality.
------------
I drove up last weekend with my buddy @used_to_race from Los Angeles to Palo Alto. We went to the Stanford Genome Center and had 15 vials of blood drawn for their CFS patient study.
The walls of the Stanford Genome Center waiting area are lined with patents, many (if not most) with the name Dr Ronald W Davis. The facility itself is large and modern with rows of laboratory benches and rooms filled with advanced testing equipment.
The two Stanford scientists we met (Fereshteh and Julie) were great as was their phlebotomist. I filled out a questionnaire detailing family history, symptoms, treatments, and doctors. The phlebotomist was gentle and drew our blood slowly through a butterfly needle. She also arranged the vials in order of importance in case either of us needed to stop during the draw, but we both did fine.
They will test our blood for electrical impedance, T-cell expansion, metabolomics / proteomics, RBC rheology, expanded cytokines (59 total), and other immune markers and pathogens.
They also took hair samples to test for environmental toxins. Most of this data will be shared with my doctor.
Fereshteh explained the study, and talked with us in depth about how potential subgroups may be identified, and various theories in general. Like Ron she is following the evidence and not letting preconceived ideology bias her research.
Julie showed us images of enlarged cells and mitochondria from an electron microscope, which were fascinating to see. We talked about various ways the vast data they've collected might be parsed using machine learning and neural nets. Both scientists were incredibly kind, accommodating, intelligent, generous with their time, and answered the questions they could.
After the blood draw we got to see our own WBCs and RBCs separated from plasma, and what appeared to be the RBCs sticking to the sides of the tube when they should've flowed freely (anecdotally correlating with Ron's "sticky blood findings"). It was interesting to see that my plasma was of a lighter color than my friend's. Later we got to see our own cells under a conventional microscope.
They were careful not to show us any patient data, reveal any findings that have not already been discussed in the public sphere, and keep us at safe distance from lab equipment and sensitive areas.
Note: They are still accepting patients and healthy controls with the cutoff for the current round being September 2018 (blood must be drawn at the Stanford location). They are only taking patients from a list of validated doctors to make sure no one with other primary diseases clouds the data.
----------------
We then left Stanford and went to meet Janet at her house and have lunch. They have a lovely house with a big yard and beautiful redwood trees. To our surprise Ron was there, and we had the honor and privilege of spending the day and evening in a wide ranging discussion. Ron and Janet are both warm, kind, humble, and have great senses of humor (Janet and I shared our guilty reality TV pleasures). We spent a lot of time laughing and joking. Their daughter Ashley (who is great!) was also there and was kind enough to pick up lunch for all of us.
Ron was interested to hear both of our stories. I shared my experiences with IVIG, mHBOT, and photopheresis. We mused about potential onset factors from stress, to pathogens, to environmental factors, to overtraining, to genetics and how the treatments I tried may have helped. Note that Ron is a researcher and not a clinician, and that most of we talked about is speculative.
We then talked about the metabolic trap and speculated about its potential causes and treatments, most of which have been covered publically (so I won't rehash here). Ron didn't share any of the specific metabolites or genes he thinks are involved because he doesn't want patients trying treatments before he can validate his results. As always he was confident that he will find and treat the root cause.
We also talked about Dysautonomia International's POTS research, and how adrenergic and muscarinic antibodies may or may not be contributors. That led us to discuss whether the cause of my lightheadedness is reduced brain glucose metabolism (due to a block in PDH), restricted blood flow to the brain (due to adrenergic dysfunction and / or sticky RBCs), a combination of both, or neither. I told him that I'll soon be getting a transcranial doppler to measure cerebral blood flow and promised to share the results.
Later we had a discussion about CRISPR, artificial intelligence, quantum computing, machine learning, and how to reduce errors in genome sequencing using redundancies. Ron shared a nice sentiment that for even the worst diseases with significant neurological damage there is hope because the entire human body came from one cell, and at some point technology may allow that process to be reverse engineered to induce neurogenesis.
At the end of evening Ron and Janet told us the story of how they met decades ago. And how they never thought that one day they'd be working together to understand and cure one of most widespread and debilitating diseases known to humanity.
---------------
Before we left, Janet invited us to see Whitney. I've delayed writing this post because I've been struggling with how to write about this. Whitney is my age, and may have the same condition I have. He was healthy, happy, and vibrant before he got sick, and now spends his time in isolated silence. I couldn't help but think it could be me. Seeing him lying there was hard, and I felt deep caring for him and his family. I wondered about his experience of it all and how he manages to get through day to day. Obviously he has great will and fortitude (as so many very severe patients do) and he likely nurtures an abiding hope that things will get better. I imagine he also spends a lot of the time in meditation and in old memories (still available through the brain fog).
My friend and I were careful to be extremely quiet because Whitney is so sensitive to sound. Even a whisper can be excruciating. We took off our shoes and left our phones and keys in another room, and took care not to make the wood flooring squeak. We were ready to leave quickly if either of us had to cough or sneeze.
I had a moment where I felt like I shouldn't be there, that I was invading his privacy and personal experience. But then it occured to me that he should be seen and that his experience should be documented; that it's important that those who are suffering behind closed doors be brought into daylight (figuratively speaking) so that they're not forgotten or ignored, and so that society is spurned to act on their behalf.
There was a visceral moment when I heard the gurgling sound of Janet giving Whitney his nightly J-tube meal. It hit home for me that Janet had nurtured and sustained him as a baby, and is now doing the same in a much different context. It reminded me of how my parents cared for me when I was young, and then again when I was severe at onset. Seeing Ron painstakingly measuring his urine output to make sure he was getting enough fluids as a matter of routine was also deeply moving. A parent's love is profound and is perhaps the closest thing to God we experience as humans.
I tend to be pragmatic and generally believe that our existence is a function of random and infinite chance. But it's not lost on me that the son of one of the world's preeminent geneticists at one of its best institutions happened to come down with one of the most severe recorded cases of CFS. What an ending to this story it will be if Ron finds a way to help us all.
As promised, here's a synopsis of my time at Stanford. I'm sharing this to inform and inspire hope while also respecting certain aspects of confidentiality.
------------
I drove up last weekend with my buddy @used_to_race from Los Angeles to Palo Alto. We went to the Stanford Genome Center and had 15 vials of blood drawn for their CFS patient study.
The walls of the Stanford Genome Center waiting area are lined with patents, many (if not most) with the name Dr Ronald W Davis. The facility itself is large and modern with rows of laboratory benches and rooms filled with advanced testing equipment.
The two Stanford scientists we met (Fereshteh and Julie) were great as was their phlebotomist. I filled out a questionnaire detailing family history, symptoms, treatments, and doctors. The phlebotomist was gentle and drew our blood slowly through a butterfly needle. She also arranged the vials in order of importance in case either of us needed to stop during the draw, but we both did fine.
They will test our blood for electrical impedance, T-cell expansion, metabolomics / proteomics, RBC rheology, expanded cytokines (59 total), and other immune markers and pathogens.
They also took hair samples to test for environmental toxins. Most of this data will be shared with my doctor.
Fereshteh explained the study, and talked with us in depth about how potential subgroups may be identified, and various theories in general. Like Ron she is following the evidence and not letting preconceived ideology bias her research.
Julie showed us images of enlarged cells and mitochondria from an electron microscope, which were fascinating to see. We talked about various ways the vast data they've collected might be parsed using machine learning and neural nets. Both scientists were incredibly kind, accommodating, intelligent, generous with their time, and answered the questions they could.
After the blood draw we got to see our own WBCs and RBCs separated from plasma, and what appeared to be the RBCs sticking to the sides of the tube when they should've flowed freely (anecdotally correlating with Ron's "sticky blood findings"). It was interesting to see that my plasma was of a lighter color than my friend's. Later we got to see our own cells under a conventional microscope.
They were careful not to show us any patient data, reveal any findings that have not already been discussed in the public sphere, and keep us at safe distance from lab equipment and sensitive areas.
Note: They are still accepting patients and healthy controls with the cutoff for the current round being September 2018 (blood must be drawn at the Stanford location). They are only taking patients from a list of validated doctors to make sure no one with other primary diseases clouds the data.
----------------
We then left Stanford and went to meet Janet at her house and have lunch. They have a lovely house with a big yard and beautiful redwood trees. To our surprise Ron was there, and we had the honor and privilege of spending the day and evening in a wide ranging discussion. Ron and Janet are both warm, kind, humble, and have great senses of humor (Janet and I shared our guilty reality TV pleasures). We spent a lot of time laughing and joking. Their daughter Ashley (who is great!) was also there and was kind enough to pick up lunch for all of us.
Ron was interested to hear both of our stories. I shared my experiences with IVIG, mHBOT, and photopheresis. We mused about potential onset factors from stress, to pathogens, to environmental factors, to overtraining, to genetics and how the treatments I tried may have helped. Note that Ron is a researcher and not a clinician, and that most of we talked about is speculative.
We then talked about the metabolic trap and speculated about its potential causes and treatments, most of which have been covered publically (so I won't rehash here). Ron didn't share any of the specific metabolites or genes he thinks are involved because he doesn't want patients trying treatments before he can validate his results. As always he was confident that he will find and treat the root cause.
We also talked about Dysautonomia International's POTS research, and how adrenergic and muscarinic antibodies may or may not be contributors. That led us to discuss whether the cause of my lightheadedness is reduced brain glucose metabolism (due to a block in PDH), restricted blood flow to the brain (due to adrenergic dysfunction and / or sticky RBCs), a combination of both, or neither. I told him that I'll soon be getting a transcranial doppler to measure cerebral blood flow and promised to share the results.
Later we had a discussion about CRISPR, artificial intelligence, quantum computing, machine learning, and how to reduce errors in genome sequencing using redundancies. Ron shared a nice sentiment that for even the worst diseases with significant neurological damage there is hope because the entire human body came from one cell, and at some point technology may allow that process to be reverse engineered to induce neurogenesis.
At the end of evening Ron and Janet told us the story of how they met decades ago. And how they never thought that one day they'd be working together to understand and cure one of most widespread and debilitating diseases known to humanity.
---------------
Before we left, Janet invited us to see Whitney. I've delayed writing this post because I've been struggling with how to write about this. Whitney is my age, and may have the same condition I have. He was healthy, happy, and vibrant before he got sick, and now spends his time in isolated silence. I couldn't help but think it could be me. Seeing him lying there was hard, and I felt deep caring for him and his family. I wondered about his experience of it all and how he manages to get through day to day. Obviously he has great will and fortitude (as so many very severe patients do) and he likely nurtures an abiding hope that things will get better. I imagine he also spends a lot of the time in meditation and in old memories (still available through the brain fog).
My friend and I were careful to be extremely quiet because Whitney is so sensitive to sound. Even a whisper can be excruciating. We took off our shoes and left our phones and keys in another room, and took care not to make the wood flooring squeak. We were ready to leave quickly if either of us had to cough or sneeze.
I had a moment where I felt like I shouldn't be there, that I was invading his privacy and personal experience. But then it occured to me that he should be seen and that his experience should be documented; that it's important that those who are suffering behind closed doors be brought into daylight (figuratively speaking) so that they're not forgotten or ignored, and so that society is spurned to act on their behalf.
There was a visceral moment when I heard the gurgling sound of Janet giving Whitney his nightly J-tube meal. It hit home for me that Janet had nurtured and sustained him as a baby, and is now doing the same in a much different context. It reminded me of how my parents cared for me when I was young, and then again when I was severe at onset. Seeing Ron painstakingly measuring his urine output to make sure he was getting enough fluids as a matter of routine was also deeply moving. A parent's love is profound and is perhaps the closest thing to God we experience as humans.
I tend to be pragmatic and generally believe that our existence is a function of random and infinite chance. But it's not lost on me that the son of one of the world's preeminent geneticists at one of its best institutions happened to come down with one of the most severe recorded cases of CFS. What an ending to this story it will be if Ron finds a way to help us all.
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