OMF(Open Medicine Foundation) OFFICIAL THREAD inc Q And A!

[Ben H]

Guys,

Just wanted to say thanks for the massive support for OMF, Professor Davis, and the thread so far. We have a bunch of clever cookies on here (we knew this already!).

If any of you get a chance and have a Facebook account, if you could 'like' the OMF and show your support this way that would be ace. Takes 2 minutes. Same with signing up to the newsletter. Many benefits to be had! Links are here:

http://www.openmedicinefoundation.org/newsletter-sign-up/

https://m.facebook.com/OpenMedicineFoundation/


And donations are ofcourse paramount if you can spare anything, no matter how small.

http://www.openmedicinefoundation.org/donate-to-the-end-mecfs-project/


Due to Professor Davis's time constraints I'd like to reiterate he cant answer some questions due to various reasons listed in the original post, but will be working through some of them over time. The amount he juggles while acheiving groundbreaking work is unbelievable.

Anyway good job, and im taking aback by it all-thankyou!


B

 

[Neunistiva]

Do you recommend we wait with any treatments until more is known or is it better to try out supplements and over-the-counter medication that helped others in the ME/CFS community?

I'm a severe case and slowly getting worse over the years (I've been ill for 7 years now) and sometimes I feel crazy that I'm not trying any treatments any more, but I've had some bad reactions to previous drugs I tried like Amantadine and I just feel reluctant to take risks.

 

[bel canto]

Ben - done. done. and done. Thanks for giving us links to help.

 

[Janet Dafoe]

From Ron Davis: "We are going to test for enteroviruses. It's not on the list because we haven't made the probes yet. The probes are specific for the enterovirus and it requires a fairly large amount of design work. In the past people have done a single tube assay for each type of virus. We are designing a single tube assay with probes for all known viruses. This makes it much cheaper. This will make it easier, faster and cheaper for anyone to test for all known viruses in the future.

We expect this technology will make it significantly easier for doctors and researchers to identify the presence of any known virus in human samples. Now they test for viruses one by one and they test for viruses that they have some reason to think might be present. With this new technology they will be able to test for all known viruses in one test and it will cost about the same as testing for one virus costs now."

Please note that Ron added another paragraph to his comment about creating new technology to test for viruses. I added it to my original post, and it appears above.

 

[Janet Dafoe]

Do you recommend we wait with any treatments until more is known or is it better to try out supplements and over-the-counter medication that helped others in the ME/CFS community?

I'm a severe case and slowly getting worse over the years (I've been ill for 7 years now) and sometimes I feel crazy that I'm not trying any treatments any more, but I've had some bad reactions to previous drugs I tried like Amantadine and I just feel reluctant to take risks.

Hi,
Please remember that Ron Davis, Janet Dafoe, Linda Tannenbaum, Ben Howell, and the researchers are not MD's and we can't give medical advice. Even the MD's on the Board or helping with the research can't really answer medical questions without a lot more information about the patient, and actually being in a treatment relationship with the patient. I know we all share ideas here, and that is incredibly useful. We have learned a lot and have tried many things we have learned about here over the years. But we can't give medical advice.

That said, our approach has been to carefully find out as much as possible about anything we are thinking about trying, and weigh the possible benefits against the risks. If there is little or no risk, we were more likely to try it. And I know the risk can be different for ME/CFS patients than it might be for others. It's always a difficult decision. And we have bins and bins in our "bottle graveyard" (phrase from Ben!), many of which are far from empty. Also, we know that it's scary because unexpected things can make you worse. And that this whole endeavor is so expensive! The lucky people find something that works for them. We always kept trying, because who knows when something might work?! Eventually we will know a lot more and will be able to target specifically what is wrong. That is the goal we are working towards as fast as we can!!!!

 

[Ben H]

Ben - done. done. and done. Thanks for giving us links to help.

Awesome @bel canto -thankyou so much.


B

 

[Neunistiva]

@Rose49 Thank you for the thorough answer. I was thinking along the same lines, but having no medical training, and being the only one in my whole country officially diagnosed with ME/CFS, and having to fight through brain fog to make every little decision, I always feel skeptical of my own judgement.

You and the whole OMF are a bigger help than you can imagine.

 

[Sasha]

That said, our approach has been to carefully find out as much as possible about anything we are thinking about trying, and weigh the possible benefits against the risks. If there is little or no risk, we were more likely to try it. And I know the risk can be different for ME/CFS patients than it might be for others. [...]

Also, we know that it's scary because unexpected things can make you worse. And that this whole endeavor is so expensive! The lucky people find something that works for them. We always kept trying, because who knows when something might work?!

Eventually we will know a lot more and will be able to target specifically what is wrong. That is the goal we are working towards as fast as we can!!!!

This is what we need! So many stories on PR of things working for some people, having no effect on others, and really hurting some badly.

I've been in a housebound relapse for 10 years now, endlessly trying stuff, none of it making the slightest difference...

Really looking forward to the precision medicine that you're working towards!

Meanwhile, I've got a new signature - please copy it, folks!

 

[Groggy Doggy]

I can view a long list of PhDs and MDs that are involved in this project. Where is the long list of patients that are contributing? From my understanding, Precision Medicine involves patient engagement and participation. We are the Stakeholders and seemed to be overlooked in the upcoming NIH study. We have an opportunity to show NIH how to do this the right way. From reading thousands of postings in Phoeonix Rising over the last year, it's clear to me that many members know more about this illness than their doctor's. Some PR members have figured out the biology of their illness and made significant process toward their improvement.

I want this project to be highly successful. We are your best resource. We need a seat at the table.

 

[Ben H]

I can view a long list of PhDs and MDs that are involved in this project. Where is the long list of patients that are contributing? From my understanding, Precision Medicine involves patient engagement and participation. We are the Stakeholders and seemed to be overlooked in the upcoming NIH study. We have an opportunity to show NIH how to do this the right way. From reading thousands of postings in Phoeonix Rising over the last year, it's clear to me that many members know more about this illness than their doctor's. Some PR members have figured out the biology of their illness and made significant process toward their improvement.

I want this project to be highly successful. We are your best resource. We need a seat at the table.

Hi @Groggy Doggy

I can promise you we have not been overlooked in the OMF studies. I agree r.e patient involvement and there is a place for this. Janet @Rose49 will know more about this than me, but there will be future opportunities for us as patients to contribute. The OMF studies are currently looking at the big data and the severely ill for hopefully a biomarker to explain the illness, and the genetics to hopefully explain the subgroups. There will be more studies building on this in future.

This thread itself is one way to have a 'seat at the table'

I will relay this back however.


Thanks,

B

 

[Groggy Doggy]

Hi @Groggy Doggy

I can promise you we have not been overlooked in the OMF studies. I agree r.e patient involvement and there is a place for this. Janet @Rose49 will know more about this than me, but there will be future opportunities for us as patients to contribute. The OMF studies are currently looking at the big data and the severely ill for hopefully a biomarker to explain the illness, and the genetics to hopefully explain the subgroups. There will be more studies building on this in future.

This thread itself is one way to have a 'seat at the table'



B

Thanks so much for your quick response and the energy you are using to monitor this thread. I am not severely ill and don't know how from a genetic approach this would differ from a non-severely ill patient? In my personal journey (3 year sickversary) I am learning my path to recovery grows in complexity each month (solve one thing and then move on to identity and resolve the next issue). And I am just one patient. Solving ME is an enourmous undertaking for the general population. And that is the reason behind my feedback and questions. '"All hands on deck" is going to be needed in working together globally to figure this out.

Thanks again!

GD

 

[duncan]

I saw the ceres nano is being employed for Lyme testing, which is very cool. I saw, too, the normal WB is also being used.

Since the usual caveats (antigenic variance, etc.) may apply here, I was wondering if there is anything being done to reduce problems associated with testing being pigeon-holed to a strain or two. Any Borrelia testing on a genus level? Or testing for as many species and strains as possible that we have knowledge of? For instance, testing to ensure no b miyamotoi or afzelii or garinii or any other very different species of Borrelia whose symptoms mimic ME/CFS and conventional Lyme - but are not picked up by US Lyme metrics - are culprits in a portion of our community?

I know Mark Davis is working on some Lyme stuff, but that effort is restricted to the San Fran area - which means strain(s) will likely be indiginous, and potentially different than, say, Connecticut or Kansas.

Sooooo, how does one discount Borrelia, if only one or two Borrelia, out of 36 Species and 300 strains already known to be on the table, are being tested for?

btw, similar strain issues also beset Bartonella testing, a disease that also is fond of chronicity.

I do realize there are costs here, and the testing already proposed is extra-ordinarily comprehensive and ambitious. It's just that, how can we rule in or out any pathogen if we are not adaquetly sweeping the field for it? I am hopeful that this team which is doing so much already, is trying to resolve this dilemma.

 

[parabola]

This is what we need! So many stories on PR of things working for some people, having no effect on others, and really hurting some badly.

I've been in a housebound relapse for 10 years now, endlessly trying stuff, none of it making the slightest difference...

Really looking forward to the precision medicine that you're working towards!

Meanwhile, I've got a new signature - please copy it, folks!

This has got me thinking, after reading through the threads about response to the common cold. Where a really obvious subset exists (people who feel better with a cold/people who feel worse etc) has anyone managed to collate this and find patterns in which supplements work or don't?

 

[Ben H]

I saw the ceres nano is being employed for Lyme testing, which is very cool. I saw, too, the normal WB is also being used.

Since the usual caveats (antigenic variance, etc.) may apply here, I was wondering if there is anything being done to reduce problems associated with testing being pigeon-holed to a strain or two. Any Borrelia testing on a genus level? Or testing for as many species and strains as possible that we have knowledge of? For instance, testing to ensure no b miyamotoi or afzelii or garinii or any other very different species of Borrelia whose symptoms mimic ME/CFS and conventional Lyme - but are not picked up by US Lyme metrics - are culprits in a portion of our community?

I know Mark Davis is working on some Lyme stuff, but that effort is restricted to the San Fran area - which means strain(s) will likely be indiginous, and potentially different than, say, Connecticut or Kansas.

Sooooo, how does one discount Borrelia, if only one or two Borrelia, out of 36 Species and 300 strains already known to be on the table, are being tested for?

btw, similar strain issues also beset Bartonella testing, a disease that also is fond of chronicity.

I do realize there are costs here, and the testing already proposed is extra-ordinarily comprehensive and ambitious. It's just that, how can we rule in or out any pathogen if we are not adaquetly sweeping the field for it? I am hopeful that this team which is doing so much already, is trying to resolve this dilemma.

Hi Duncan,

This is pretty difficult as the testing for Lyme as you know is not great at all. There was another species of borrelia found recently in Australia and new species seemingly being found regularly. Its a constant moving target. I am as dismayed as you are at the Lyme situation in general. It is absolutely dire.

This is a good question, and related to the study, however it is not going to be able to be answered soon as it will require some input from Ron/Team who is extremely busy. They will be aware of the limitations ofcourse, but I will pass this on in due course. What they are finding currently seems to be the end result-metabolic shutdown/abnormalities. The cause is not known yet and may be different for patients, but with the same/similar end result.

Will note down and if possible get some answers in due course.

Thanks

Ben

 

[duncan]

I just want to add that I am appreciative that these people are running a staggering amount of tests. They are truly pulling out the stops.

I feel my concerns have merit, but I know they arguably belong in a Lyme study, not an ME/CFS study. So, I feel the hands of Davis and company are likely tied here by several considerations. They are casting a wide net, and granularity in some instances may not be as super as one would prefer.

In a fair world, and a good world, Lyme would take care of Lyme. Or there would be enough funds for ME/CFS that one could dedicate a full-powered study at how all the different Borrelia fit into the ME/CFS equation. Or we'd build a better technology that showed us what we need to see.

So if @Ben Howell , there is no fast answer, or any answer, I'm ok with that. I know these people are doing the best with what they have, and they have the best intentions powered by some of the best brains.

 

[Simon]

From Ron Davis: "We are going to test for enteroviruses. It's not on the list because we haven't made the probes yet. The probes are specific for the enterovirus and it requires a fairly large amount of design work. In the past people have done a single tube assay for each type of virus. We are designing a single tube assay with probes for all known viruses. This makes it much cheaper. This will make it easier, faster and cheaper for anyone to test for all known viruses in the future.

We expect this technology will make it significantly easier for doctors and researchers to identify the presence of any known virus in human samples. Now they test for viruses one by one and they test for viruses that they have some reason to think might be present. With this new technology they will be able to test for all known viruses in one test and it will cost about the same as testing for one virus costs now."

I wondered if Ron was aware that another mecfs researcher, Ian Lipkin, had done just something very similar last year:
Diagnostics Breakthrough Brings Viral Sequencing to Doctors’ Toolkit | Columbia University Mailman School of Public Health
Research paper:
Virome Capture Sequencing Enables Sensitive Viral Diagnosis and Comprehensive Virome Analysis

To use VirCapSeq-VERT, scientists select from among approximately 2 million genetic pieces, representing all viral taxa known to infect vertebrates. These genetic pieces are used to constitute a probe, which is introduced alongside material taken from the sample being tested. A magnetic process “pulls out” segments from the sample that match the probe; these segments are then analyzed using high-throughput sequencing. In a series of tests detailed in the study, scientists used VirCapSeq-VERT to test for a wide range of viruses in lung tissue, blood, nasal swabs, and feces. In tests of blood or tissue, the method resulted in 100 to 10,000-fold increases in viral matches compared with conventional high-throughput tests.

A Harbinger of Precision Medicine
Ian Lipkin, MD, CII director and John Snow Professor of Epidemiology, explains that heretofore high-throughput screening lacked the necessary sensitivity for detecting viruses. And PCR lacked the ability to test for multiple viruses simultaneously, making screening viruses time consuming and expensive. By contrast, says Lipkin, senior author on the paper, “VirCapSeq-VERT is a specific, sensitive, powerful way of characterizing all of the viruses in a sample. This will be an important tool for precision medicine as well as basic and clinical research.”

Which is potentially one less thing for Ron to do

 

[wastwater]

I wonder if Chromosome 13q14 will turn out to be an interesting location

 

[Groggy Doggy]

in reading all of the posts I see the need to hire a project manager. Stanford has an excellent Business School; does Ron have any contacts there? Additionally, the private sector in Silicon Valley, holds a massive amount of talent. Also within the Phoenix Rising community, I suspect we have members with knowledge of Project Management, Systems Analyst, & Business Analyst.

 

[Gingergrrl]

@Ben Howell I am so curious re: Dr. Davis's thoughts re: the role of auto-immune antibodies and treatments such as plasmapheresis, IVIG, Rituximab or other immunosuppressants (such as some the treatments being tried in the research study at the Charite with Dr. Carmen Schiebenbogen.)

I was wondering if the Severely Ill Patient Study will ultimately include tests such as the PAVAL panel done by Mayo Clinic (and maybe by other labs?) to test for auto-antibodies to the different ion channels or anti-muscarinic auto-antibodies, etc?

I am wondering if within the severely ill patients, Dr. Davis is already seeing different sub-groups (such as an auto-immune sub-group vs. an immune deficiency sub-group) and if he views the different sub-groups as needing different types of treatments (vs. everyone trying an anti-viral just as an example) or is the research way too premature to be thinking about sub-groups?

Basically, I am curious on his thoughts about the role of auto-immunity, testing for ion channelopathies, and treatments such as IVIG, immuno-adsorption or plasmapheresis, RTX, etc.

Thanks in advance!

ETA: Edited for clarity!

 

[Ben H]

@Ben Howell Am not sure exactly how to phrase my question but am so curious re: Dr. Davis's thoughts on the role of auto-immune antibodies and treatments such as plasmapheresis, IVIG, Rituximab or other immunosuppressants (such as some the things being tried in the research study at the Charite with Dr. Carmen Schiebenbogen.)

I was wondering if the Severely Ill Patient Study will ultimately include tests such as the PAVAL panel (done by Mayo Clinic and maybe by other labs) to test for auto-antibodies to the different ion channels or anti-muscarinic auto-antibodies, etc?

I am wondering if within the severely ill patients, he is already seeing different sub-groups (such as an auto-immune sub-group vs. an immune deficiency sub-group) and if he views the different sub-groups as needing different types of treatments (vs. everyone trying an anti-viral just as an example) or is the research way too premature to be thinking about sub-groups?

Basically, I am curious on his thoughts about the role of auto-immunity, testing for ion channelopathies, and the treatments used in research study at the Charite and elsewhere such as IVIG, immuno-adsorption or plasmapheresis, RTX, etc.

Thanks in advance!

Hi @Gingergrrl

Rituxumab and autoimmunity is a very popular topic!

There are a couple of caveats however. For a definitive answer we would of course need Rons input, certainly for the first part. Whether he is able to (he will absolutely have ideas on it, the genius that he is) is based on a few things-having time for an answer that does it justice, professional courtesy (sometimes it is not appropriate to comment on other research, especially in certain stages) and confidentiality to name but a few.

I will note this down and pass it on, but just putting it out there that some parts may be unanswerable for the time being.

Whether the Severely Ill Patient Study will ultimately include PAVAL I am not sure, but again will pass all this onwards. Prof. Davis and his team have an extremely logical way of working, and addressing all areas, but are led currently by where the Big Data and Severely Ill findings point at. It may be that anti-muscarinic auto antibodies are extremely relevant, or not at all. But be sure that if the data points them that way, they will be onto it. Currently afaik (so far), it doesn't.

Thanks for the questions and I will pass them on as said


B