Help me research ME/CFS, Lyme Disease, ALS etc
Tax deductible
Hi Friends,
I'm writing in the hopes that you can make a charitable donation to support my non-profit's scientific research. The Collaborative Project described below has the potential to help patients with ME/CFS, Post Treatment Lyme Disease, ALS, Alzheimer's and other neuroinflammatory conditions that at the moment have few, if any, treatment options. Here's more context:
As many of you know, I am a microbiologist who studies how bacterial and viral infections can drive symptoms in patients with neuroinflammatory diseases like Chronic Fatigue Syndrome (also known as Myalgic Encephalomyelitis or ME/CFS ). I started this research well over a decade ago as an undergraduate at Georgetown University after getting sick with the illness myself. After almost two years of being mostly bedridden I started to volunteer from home for the non-profit organization Autoimmunity Research Foundation. I was able to improve my own ME/CFS symptoms greatly after using an antimicrobial treatment - but that’s a long story for another day:)
I still work with the Foundation, and over the years we have published journal articles and book chapters detailing how pathogens like the herpesviruses and Epstein Barr Virus can drive symptoms of not just ME/CFS, but related conditions like MS, ALS, Alzheimer’s, RA…and most obviously Post Treatment Lyme Disease (in that case we focus on the bacterial pathogen Borrelia). These papers/chapters are being used by a growing number of international research teams as the basis for how to best study infection in a growing range of these debilitating conditions.
Working in this capacity is allowing our team to directly collaborate with other key global research teams also studying how infection drives a broad range of neuroinflammatory symptoms. Indeed, we are in the process of setting up this Large Collaborative Project:
Our Collaborative Project will bring together four top research teams to (for the first time ever!) combine their cutting-edge computer technologies to identify bacteria, viruses, fungi and other organisms in the blood and cerebrospinal fluid of patients with ME/CFS. The first of these teams will be led by Nikos Kyrpides and David Paez-Espino at Berkeley University. They are currently running a massive project called “Uncovering the Earth’s Virome (Viral Communities).” They have also created IMG/VR - the largest and most diverse virus database in the world. Our Collaboration will mark the first time that these computer technologies will be used to identify viruses, bacteria and fungi outside the human gut…and instead in the blood and actual body fluids of patients with ME/CFS (where a growing body of evidence shows they are most likely to persist). Most importantly, their technologies can identify both known and as-yet-undiscovered viruses and bacteria in any human sample we analyze. That means we can identify pathogens contributing to the illness that may not yet even be on the radar of other research teams. Please read this interview I did with David Paez-Espino for more background on their research team and technologies.
The second team involved in the Collaborative Project is Rudy Tanzi and Robert Moir's team at Harvard University. Rob and Rudy are currently running the Harvard “Brain Microbiome Project.” While the data from the Project is not yet formally published, they are finding communities of bacteria, viruses and fungi in the brains of patients with Alzheimer’s disease…and even in brains obtained from healthy patients. This strongly suggests that despite what current medical textbooks “claim”, the brain is not at all sterile - and, in fact, a significant number of pathogens contributing to Alzheimer’s , Parkinson’s and ALS can live directly in brain tissue or in the cerebrospinal fluid of patients with such illnesses.
Rob has also made what I consider to be one of the most important discoveries in the history of Medicine: amyloid beta - the “plaque” that accumulates in the Alzheimer’s brain is not actually plaque, but a potent antimicrobial molecule that traps and kills viruses and bacteria capable of persisting in the Alzheimer’s brain. Please read this article in Forbes Magazine for more background. Also please read this interview I did with Rob for more background on his work. Rob will be sending his team's own brain tissue/blood/cerebrospinal fluid samples to Nikos and David for the same virus/bacteria/fungi-based analysis that will be performed on our team’s ME/CFS samples. That will allow us to compare organisms found in patients with the two related neuroinflammatory conditions.
The next step is to work with several doctors at Harvard to send blood + cerebrospinal fluid samples obtained from patients with Post Treatment Lyme Disease and ALS though the same pipeline. We will also interface on a regular basis with Mike VanElzakker’s team at Harvard who is currently using fMRI brain scans done at the Harvard/MIT Martinos Center to study neuroinflammation and structural abnormalities in the ME/CFS brain. Our goal will be to study how any bacteria, viruses and fungi found in our ME/CFS blood + cerebrospinal samples might impact the development of such symptoms in the ME/CFS brain. Please read this interview I did with Mike for more background on his team’s work.
The ME/CFS samples we will use for analysis will come from Jonas Bergquist’s team in Sweden - who, in my opinion, works with the clinic that best collects cerebrospinal fluid from patients with the illness. Collecting such samples requires a lumbar puncture - a procedure that must be done with the upmost care. I know Jonas well and trust his team incredibly in that regard (patient safety).
Last but not least, blood samples from the ME/CFS patients (and possibly patients with PTLD and ALS) will be sent to Doug Kell’s team in England for a microscope-based analysis of bacteria present in the samples. Doug and team are doing amazing work on using imaging techniques to identify a wide range of bacterial communities in the blood of patients with Parkinson’s, Alzheimer’s and related conditions. So we are very eager to also bring their skills into the study of ME/CFS and PTLD.
Why am telling you all this? Because I need your help with funding to allow this Collaborative Project to best move forward. There is funding from the NIH for Alzheimer’s samples to be analyzed by our collaborative group - but NO FUNDING available from the NIH that would allow blood and cerebrospinal fluid from patients with ME/CFS and PTLD to be included in the study. I have applied for a $50,000 grant from one patient-funded ME/CFS Organization, but that funding will not cover all the cost of sample collection and analysis.
Also, your help could allow me (Amy Proal) to get a small salary for my work with the Project (and related projects). Because the NIH barely funds research on ME/CFS (the condition I study the most) I have never yet taken any salary for the work I do with Autoimmunity Research Foundation. Taking a salary would mean taking money directly away from projects that already have too little funding to begin with. I have chosen to live at home with my family who supports my basic expenses to prevent this from happening.
But - if I were able to raise about $50,000 to cover my living expenses I could move to Boston, where I could work much more directly with the main research teams involved in our Collaborative Project. I could also work more directly with a growing young research community at Harvard, whose doctors are increasingly using several of our team’s papers as a basis for how to best study and treat Post Treatment Lyme Disease. Your funding would also allow me to better travel to attend very important upcoming conferences focused on infection in neuroinflammatory disease - including the upcoming Nero-Immune Axis Conference in LA and the upcoming ILADs Conference in Boston.
By the way - if I make it a priority I can create a position for myself at Harvard that would allow me to work under the “Harvard” name. While my priority is “good research” rather than “fancy names,” a position at Harvard might eventually better allow me to petition the NIH for more money to study ME/CFS. However, even if I take a position at Harvard…my position would have to be funded by private donors like you to start:)
Thank you from the bottom of my heart for any donation you are able to make for the research I’ve described. Since Autoimmunity Research Foundation is a 501(c)(3) your donations are tax-deductible. The first $50,000 raised will go to a salary for me…and any additional funding will go towards the Projects themselves. Please email me at [email redacted] if you have any questions or want more background information on our work.
I'm writing in the hopes that you can make a charitable donation to support my non-profit's scientific research. The Collaborative Project described below has the potential to help patients with ME/CFS, Post Treatment Lyme Disease, ALS, Alzheimer's and other neuroinflammatory conditions that at the moment have few, if any, treatment options. Here's more context:
As many of you know, I am a microbiologist who studies how bacterial and viral infections can drive symptoms in patients with neuroinflammatory diseases like Chronic Fatigue Syndrome (also known as Myalgic Encephalomyelitis or ME/CFS ). I started this research well over a decade ago as an undergraduate at Georgetown University after getting sick with the illness myself. After almost two years of being mostly bedridden I started to volunteer from home for the non-profit organization Autoimmunity Research Foundation. I was able to improve my own ME/CFS symptoms greatly after using an antimicrobial treatment - but that’s a long story for another day:)
I still work with the Foundation, and over the years we have published journal articles and book chapters detailing how pathogens like the herpesviruses and Epstein Barr Virus can drive symptoms of not just ME/CFS, but related conditions like MS, ALS, Alzheimer’s, RA…and most obviously Post Treatment Lyme Disease (in that case we focus on the bacterial pathogen Borrelia). These papers/chapters are being used by a growing number of international research teams as the basis for how to best study infection in a growing range of these debilitating conditions.
Working in this capacity is allowing our team to directly collaborate with other key global research teams also studying how infection drives a broad range of neuroinflammatory symptoms. Indeed, we are in the process of setting up this Large Collaborative Project:
Our Collaborative Project will bring together four top research teams to (for the first time ever!) combine their cutting-edge computer technologies to identify bacteria, viruses, fungi and other organisms in the blood and cerebrospinal fluid of patients with ME/CFS. The first of these teams will be led by Nikos Kyrpides and David Paez-Espino at Berkeley University. They are currently running a massive project called “Uncovering the Earth’s Virome (Viral Communities).” They have also created IMG/VR - the largest and most diverse virus database in the world. Our Collaboration will mark the first time that these computer technologies will be used to identify viruses, bacteria and fungi outside the human gut…and instead in the blood and actual body fluids of patients with ME/CFS (where a growing body of evidence shows they are most likely to persist). Most importantly, their technologies can identify both known and as-yet-undiscovered viruses and bacteria in any human sample we analyze. That means we can identify pathogens contributing to the illness that may not yet even be on the radar of other research teams. Please read this interview I did with David Paez-Espino for more background on their research team and technologies.
The second team involved in the Collaborative Project is Rudy Tanzi and Robert Moir's team at Harvard University. Rob and Rudy are currently running the Harvard “Brain Microbiome Project.” While the data from the Project is not yet formally published, they are finding communities of bacteria, viruses and fungi in the brains of patients with Alzheimer’s disease…and even in brains obtained from healthy patients. This strongly suggests that despite what current medical textbooks “claim”, the brain is not at all sterile - and, in fact, a significant number of pathogens contributing to Alzheimer’s , Parkinson’s and ALS can live directly in brain tissue or in the cerebrospinal fluid of patients with such illnesses.
Rob has also made what I consider to be one of the most important discoveries in the history of Medicine: amyloid beta - the “plaque” that accumulates in the Alzheimer’s brain is not actually plaque, but a potent antimicrobial molecule that traps and kills viruses and bacteria capable of persisting in the Alzheimer’s brain. Please read this article in Forbes Magazine for more background. Also please read this interview I did with Rob for more background on his work. Rob will be sending his team's own brain tissue/blood/cerebrospinal fluid samples to Nikos and David for the same virus/bacteria/fungi-based analysis that will be performed on our team’s ME/CFS samples. That will allow us to compare organisms found in patients with the two related neuroinflammatory conditions.
The next step is to work with several doctors at Harvard to send blood + cerebrospinal fluid samples obtained from patients with Post Treatment Lyme Disease and ALS though the same pipeline. We will also interface on a regular basis with Mike VanElzakker’s team at Harvard who is currently using fMRI brain scans done at the Harvard/MIT Martinos Center to study neuroinflammation and structural abnormalities in the ME/CFS brain. Our goal will be to study how any bacteria, viruses and fungi found in our ME/CFS blood + cerebrospinal samples might impact the development of such symptoms in the ME/CFS brain. Please read this interview I did with Mike for more background on his team’s work.
The ME/CFS samples we will use for analysis will come from Jonas Bergquist’s team in Sweden - who, in my opinion, works with the clinic that best collects cerebrospinal fluid from patients with the illness. Collecting such samples requires a lumbar puncture - a procedure that must be done with the upmost care. I know Jonas well and trust his team incredibly in that regard (patient safety).
Last but not least, blood samples from the ME/CFS patients (and possibly patients with PTLD and ALS) will be sent to Doug Kell’s team in England for a microscope-based analysis of bacteria present in the samples. Doug and team are doing amazing work on using imaging techniques to identify a wide range of bacterial communities in the blood of patients with Parkinson’s, Alzheimer’s and related conditions. So we are very eager to also bring their skills into the study of ME/CFS and PTLD.
Why am telling you all this? Because I need your help with funding to allow this Collaborative Project to best move forward. There is funding from the NIH for Alzheimer’s samples to be analyzed by our collaborative group - but NO FUNDING available from the NIH that would allow blood and cerebrospinal fluid from patients with ME/CFS and PTLD to be included in the study. I have applied for a $50,000 grant from one patient-funded ME/CFS Organization, but that funding will not cover all the cost of sample collection and analysis.
Also, your help could allow me (Amy Proal) to get a small salary for my work with the Project (and related projects). Because the NIH barely funds research on ME/CFS (the condition I study the most) I have never yet taken any salary for the work I do with Autoimmunity Research Foundation. Taking a salary would mean taking money directly away from projects that already have too little funding to begin with. I have chosen to live at home with my family who supports my basic expenses to prevent this from happening.
But - if I were able to raise about $50,000 to cover my living expenses I could move to Boston, where I could work much more directly with the main research teams involved in our Collaborative Project. I could also work more directly with a growing young research community at Harvard, whose doctors are increasingly using several of our team’s papers as a basis for how to best study and treat Post Treatment Lyme Disease. Your funding would also allow me to better travel to attend very important upcoming conferences focused on infection in neuroinflammatory disease - including the upcoming Nero-Immune Axis Conference in LA and the upcoming ILADs Conference in Boston.
By the way - if I make it a priority I can create a position for myself at Harvard that would allow me to work under the “Harvard” name. While my priority is “good research” rather than “fancy names,” a position at Harvard might eventually better allow me to petition the NIH for more money to study ME/CFS. However, even if I take a position at Harvard…my position would have to be funded by private donors like you to start:)
Thank you from the bottom of my heart for any donation you are able to make for the research I’ve described. Since Autoimmunity Research Foundation is a 501(c)(3) your donations are tax-deductible. The first $50,000 raised will go to a salary for me…and any additional funding will go towards the Projects themselves. Please email me at [email redacted] if you have any questions or want more background information on our work.
Organizer
Amy Proal
Organizer
Thousand Oaks, CA
Autoimmunity Research Inc
Beneficiary