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

Ben H

OMF Volunteer Correspondent
Messages
1,131
Location
U.K.
Thanks so much Ben--this is great.
I have a couple of comments:
If we simply edit the post with our questions, how would anyone know? It won't pop back to the top of new posts, and, if I understand correctly, it won't trigger a watched thread alert. This is likely to be a long thread and members won't be able to keep going back and looking for edited posts.

Jarred Younger isn't a clinician--he doesn't see patients. I think he is looking for a clinician to liaise with but, as far as I know, it hasn't happened yet. He does have research projects that patients can participate in though.

Hi Sushi.

Im keeping an eye on each post and question asked, noted down. I will periodically check each persons posts to see if any more have been added. I thought this way we would have less clutter/random impulse questions, less (undirected) posts overall. I am open to suggestions though-as a moderator you might know best!

R.e Jared Younger-thats simply the list I have from OMF. I will clarify with Linda.



B
 

Ben H

OMF Volunteer Correspondent
Messages
1,131
Location
U.K.
Why is enterovirus serology not being done in the severely ill big data study?

Good question @halcyon . Noted down. As a quick thought, enteroviral testing aka Dr Chia required biopsy, and the patients that have been studied so far are unlikely to have been well enough to have this done (severely ill).

Thanks!

Ben
 

halcyon

Senior Member
Messages
2,482
As a quick thought, enteroviral testing aka Dr Chia required biopsy, and the patients that have been studied so far are unlikely to have been well enough to have this done (severely ill).
I'm aware of that, I'm specifically asking about serology. They are performing full serology for herpes viruses, parvovirus B19, and borrelia but they are ignoring enteroviruses for some reason.
 

Ben H

OMF Volunteer Correspondent
Messages
1,131
Location
U.K.
I'm aware of that, I'm specifically asking about serology. They are performing full serology for herpes viruses, parvovirus B19, and borrelia but they are ignoring enteroviruses for some reason.

It may be down to sensitivity, but I will certainly ask as I don't know.

Thanks!
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Hi Sushi.

Im keeping an eye on each post and question asked, noted down. I will periodically check each persons posts to see if any more have been added. I thought this way we would have less clutter/random impulse questions, less (undirected) posts overall. I am open to suggestions though-as a moderator you might know best!

R.e Jared Younger-thats simply the list I have from OMF. I will clarify with Linda.



B

Two Rs in "Jarred", BTW (for their list).
 

Janet Dafoe

Board Member
Messages
867
Thanks so much Ben--this is great.
I have a couple of comments:
If we simply edit the post with our questions, how would anyone know? It won't pop back to the top of new posts, and, if I understand correctly, it won't trigger a watched thread alert. This is likely to be a long thread and members won't be able to keep going back and looking for edited posts.

Jarred Younger isn't a clinician--he doesn't see patients. I think he is looking for a clinician to liaise with but, as far as I know, it hasn't happened yet. He does have research projects that patients can participate in though.
@BenHowell Sorry, that was a mistake. Ben, could you switch Jarred younger up under academic collaborators part of the list? Thank you
 
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perrier

Senior Member
Messages
1,254
Good question @halcyon . Noted down. As a quick thought, enteroviral testing aka Dr Chia required biopsy, and the patients that have been studied so far are unlikely to have been well enough to have this done (severely ill).

Thanks!

Ben
Much later, I contacted Dr Chia and he requested slides of the biopsies and confirmed enterovirus. He even suggested that the virus was causing inflammation in the veins and thus aneurysms. Yes, please ask about enterovirus. Thanks for your superb work.
 
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Janet Dafoe

Board Member
Messages
867
Why is enterovirus serology not being done in the severely ill big data study?
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."
 
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M Paine

Senior Member
Messages
341
Location
Auckland, New Zealand
A question I have, is hypothetically if a more understood disease such as Diabetes Type II was to undergo a study in the same style that the OMF is using (assuming it was still a disease which was relatively obscure/not-understood), what sort of results might one expect? Would the metabolomic profile stick out like a sore thumb, and insulin resistance be 'obvious' for lack of a better word?

My second question is a little more abstract. I'm wondering if the researchers involved in OMF could comment on there feeling around how CFS/ME is perceived within the scientific community, and if they have noticed a shift in perception. Specifically, do researchers still find that the idea of CFS/ME having a psychological origin still persisting among peers or other related clinical, regulatory, or academic professionals?

My feeling as a patient is that there have been some seminal papers released lately (Hornig et all in particular) which have had some large attention from media. And that those papers have shifted perception among the general population. I wonder if the evidence for a physiological origin for this disease has had any noticeable impact from within academia, or in other areas of science.

Thank you @Ben Howell, you and the OMF should be commended for the outreach that you are providing to us. It's more than appreciated.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
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."

This just amazes me about the whole project - they're designing all this incredible stuff!

If the test ends up cheap enough, won't this have huge implications for medicine generally, let alone for poorly misunderstood diseases in particular?

Where the heck is the NIH in all this? (Don't bother answering that one! :))
 

A.B.

Senior Member
Messages
3,780
The OMF data so far suggests problems with energy production in cells (in a highly selected sample). The Rituximab results suggest B cell related autoimmunity in at least half of patients (in a sample meeting the Candadian case definition, recruited through, I believe, referrals from neurologists).

According to the Norwegians, the more severely ill patients seem to be less likely to respond to Rituximab.

Maybe this is a variation of the story of the blind men and the elephant, maybe we're starting to see subgroups emerge more clearly.

My questions to the OMF:

How are you approaching the subgroup issue?

Do you think that the Rituximab response group has the same disease as the patients that you have looked at so far?
 
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Ben H

OMF Volunteer Correspondent
Messages
1,131
Location
U.K.
This just amazes me about the whole project - they're designing all this incredible stuff!

If the test ends up cheap enough, won't this have huge implications for medicine generally, let alone for poorly misunderstood diseases in particular?

Where the heck is the NIH in all this? (Don't bother answering that one! :))

Ron's prior discoveries have absolutely revolutionised medicine and understanding, as his whole career has. So I imagine its a Yes! Cutting edge stuff indeed.
 

A.B.

Senior Member
Messages
3,780
Also, would it be worthwhile to pressure the NIH into funding this project? The next #millionsmissing campaign could ask for funding specifically for the OMF and Lipkin. I don't know the culture in the NIH and whether it could bring the desired results or possibly backfire. Does the OMF think that this would be a good idea? Could this quickly lead to an incrase in funding?
 
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Janet Dafoe

Board Member
Messages
867
This just amazes me about the whole project - they're designing all this incredible stuff!

If the test ends up cheap enough, won't this have huge implications for medicine generally, let alone for poorly misunderstood diseases in particular?

Where the heck is the NIH in all this? (Don't bother answering that one! :))
"If the test ends up cheap enough, won't this have huge implications for medicine generally, let alone for poorly misunderstood diseases in particular?"
YES! That's what they think!
 

JoanDublin

Senior Member
Messages
369
Location
Dublin, Ireland
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."

I could cry with happiness after reading this! This would be an amazing revolution!
 

Ben H

OMF Volunteer Correspondent
Messages
1,131
Location
U.K.
The OMF data so far suggests problems with energy production in cells (in a highly selected sample). The Rituximab results suggest B cell related autoimmunity in at least half of patients (in a sample meeting the Candadian case definition, recruited through, I believe, referrals from neurologists).

According to the Norwegians, the more severely ill patients seem to be less likely to respond to Rituximab.

Maybe this is a variation of the story of the blind men and the elephant, maybe we're starting to see subgroups emerge more clearly.

My questions to the OMF:

How are you approaching the subgroup issue?

Do you think that the Rituximab response group has the same disease as the patients that you have looked at so far?

Hi @A.B.

Genetics may be reponsible for the subgroups, and this is currently being investigated:

http://www.openmedicinefoundation.org/expanded-mecfs-metabolomics-study/

Quoting from the article:

"The purpose of this study is to validate earlier findings of a possible diagnostic signature for ME/CFS by measuring metabolites and to evaluate the contribution of genetics to the variation in observed metabolic signatures in this disease."

However we need to wait for the findings to come out/for Ron to answer these specific questions with more certainty. He is extremely busy as you can imagine and some things are not able to be answered just yet due to various reasons, as I said in the opening post. I will make a note of your questions, and as soon as I learn more, will let you know.


Thanks!


B
 
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