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Neil McGregor’s presentation at Open Medicine Foundation’s Community Symposium

FMMM1

Senior Member
Messages
513
Split from the thread "Rituximab Phase III - Negative result"


Interestingly, none of that in my siblings/parents/ancestors nor myself, although could that be because these are relatively recent developments (I'm 60 and youngest sibling)? Then again, my son has hayfever and partner has IBD and coeliac. Could the latter point more to infectious agent?

All anecdotal of course, but such epidemiological data on a large scale might be very illuminating.

I've mined the "transcription of Neil McGregor’s presentation at Open Medicine Foundation’s Community Symposium" i.e. on the Melbourne University website [MELBOURNE BIOANALYTICS]. He identified genetic variations among people with ME/CFS interestingly they highlight a link to virus's (RNA helicases & Langerin) and symptoms (G-proteins).

Question is how do we influence those who control the research budgets - NIH / European Commission / UK Government (£5 million plus for PACE)? E.g. European Commission has funded a fair bit research on diagnostic tests for Lyme's disease; they have a total budget of 80 billion euros (90 billion US dollars).


Extracts from transcription of Neil McGregor’s presentation:
"The 4th, 5th, 6th, & 7th clusters all involve RNA helicases. RNA helicases remove viral and bacterial RNA, and our host RNA, from the cell. These four clusters which had anomalies in RNA helicases, also had anomalies in some additional genes."

"RNA helicases are enzymes which remove double-stranded DNA, viral RNA and host RNA out of the cytoplasm. They are inhibited by viruses, and could potentially be the major reason for viral triggers in ME/CFS because, if there is a problem with RNA helicases, the body will have difficulty removing the viral RNA from the cell."

"From HIV studies, we know that when Langerin is inhibited, patients have greater viral loads, and more infections in the body."

"G-proteins are involved in a wide variety of processes in the body, many of which involve common symptoms in people with ME/CFS. Looking at the table on this slide, you can see the percentage ME/CFS patients in our sample who reported these symptoms. We think that some of these G proteins are critically important in symptom expression in ME/CFS."
 
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fingers2022

Senior Member
Messages
427
I've mined the "transcription of Neil McGregor’s presentation at Open Medicine Foundation’s Community Symposium" i.e. on the Melbourne University website [MELBOURNE BIOANALYTICS]. He identified genetic variations among people with ME/CFS interestingly they highlight a link to virus's (RNA helicases & Langerin) and symptoms (G-proteins).

It is definitely viral, no question.

Question is how do we influence those who control the research budgets - NIH / European Commission / UK Government (£5 million plus for PACE)? E.g. European Commission has funded a fair bit research on diagnostic tests for Lyme's disease; they have a total budget of 80 billion euros (90 billion US dollars).

Indeed, that is the question. Let's brainstorm that one then.

Extracts from transcription of Neil McGregor’s presentation:
"The 4th, 5th, 6th, & 7th clusters all involve RNA helicases. RNA helicases remove viral and bacterial RNA, and our host RNA, from the cell. These four clusters which had anomalies in RNA helicases, also had anomalies in some additional genes."

"RNA helicases are enzymes which remove double-stranded DNA, viral RNA and host RNA out of the cytoplasm. They are inhibited by viruses, and could potentially be the major reason for viral triggers in ME/CFS because, if there is a problem with RNA helicases, the body will have difficulty removing the viral RNA from the cell."

"From HIV studies, we know that when Langerin is inhibited, patients have greater viral loads, and more infections in the body."

"G-proteins are involved in a wide variety of processes in the body, many of which involve common symptoms in people with ME/CFS. Looking at the table on this slide, you can see the percentage ME/CFS patients in our sample who reported these symptoms. We think that some of these G proteins are critically important in symptom expression in ME/CFS."

Actually, if we got all of the right people together and facilitated the discussion constructively, I think we might get somewhere. In spite of everything, I don't think this has really happened yet.
There are several organisations who seem to be saying this same thing, but I'm not particularly inspired by any of them.
 

pattismith

Senior Member
Messages
3,931
thank you @FMM1

maybe you know where I could read this paper by Mac Gregor (2016), where it is question of changes in kidney's handling of electrolytes...?

upload_2017-12-3_22-24-8.png
 

FMMM1

Senior Member
Messages
513
Actually, if we got all of the right people together and facilitated the discussion constructively, I think we might get somewhere. In spite of everything, I don't think this has really happened yet.
There are several organisations who seem to be saying this same thing, but I'm not particularly inspired by any of them.

Not entirely sure I follow. I think the gene stuff is suggesting a high incidence of genetic mutations which may result in reduced ability to clear virus etc. However, it a competitive thing i.e. you can have virus because you're not good at getting rid of it; or if the virus is particularly virulent or whatever it's called (effective?). I think the data is suggesting potentially we can't clear "ordinary" virus.

Crack it for a small group and you may explain symptoms (generally) e.g. fatigue; and identify other potential ways to get to the same endpoint e.g. virulent virus. E.g. some of the mass outbreaks (if they were ME/CFS) would presumably require a virus that could affect everyone not just the genetically vulnerable.

In terms of how to get funding I'm not sure. Here's an extract from the European Commission response to question "E-008631/2016" re Lyme disease "Both basic research and the development of new diagnostics, treatments and vaccines for Lyme borreliosis are funded by EU research and innovation framework programmes. The total EU contribution to such projects since 2007 amounts to EUR 33.9 million.". I.e. Lyme's got EUR 33.9 million in 10 years and we got? When they answer question "E-006901-17" i.e. the only question on ME/CFS we might know the answer.

Try you're local Member of the European Parliament (MEP); they've got an "allowance" of questions. Look on the European Parliament website for typical questions e.g. search for "neurological" and you'll see sample questions.

Anyone who can write french or any other community language could try other countries. Also, look out for MEPs who asked questions on Lyme or Fibro they've potentially got an interest.

Google "European Parliament Parliamentary questions" and you'll find the web page. Don't matter where your from (I guess) since an MEP may hopefully want to ask the question.
 

FMMM1

Senior Member
Messages
513
Thanks for posting! Do you know if the rs numbers are anywhere, and can these SNPs be found by mining one's 23andme data?

Haven't seen a paper. I've only seen the symposium presentation (YouTube). Re numbers, in the video he says that ration of 2:1 generally gets scientists excited; they found some at 20+:1 i.e. 10 times higher. I think they fairly ruthlessly filtered but I'm relying on memory.

Re your gene test; I had a bit of interest in that but never followed it up. I'm guessing they only incorporate what's known to be useful; therefore, they wouldn't have put this in.
 

pattismith

Senior Member
Messages
3,931
Split from the thread, Widespread pain and altered renal function in ME/CFS patients.

I found this place is a better one to talk about Neil MC Gregor presentation at the OMF symposium, so I moved it from the Ritux thread.
@FMMM1 was kind to give us details about it and a link to the presentation, many thanks to him:

if you haven't already done so then possibly check out Neil McGregor's presentation at the symposium and the transcript which is on the Melbourne University website. E.g. the following "Dendritic cells are found on those parts of the body which have contact with the external environment (skin, and mucosa like nose, throat, gut). They serve to alert the immune system to the presence of pathogens. The CD207 gene codes for Langerin, which is a protein found in dendritic cells. If there is a problem with the CD207 gene, then the body will likely have problems detecting certain viruses."

I think the latter bit highlights that it may not be a case of a virus that is good at avoiding the immune system etc.; it's potentially just that our immune systems aren't functioning properly.

Neil's presentation is worth viewing for the last slide alone. Much of the science goes over my head.


[/QUOTE]
 
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FMMM1

Senior Member
Messages
513
Thanks for posting! Do you know if the rs numbers are anywhere, and can these SNPs be found by mining one's 23andme data?

Further thought, Nancy Klimas's group are/were interested in using 23andme data to identify genes in ME/CFS.

Re "rs numbers" not sure what that is but the p values for 95 confidence interval are 10 minutes into YouTube video. RNA helicases/Langerin/G-proteins snips had p values of less than 0.05 i.e. statistically significant at 95 confidence interval.

He also issues a health warning "This is preliminary data. Clearly, this data may still be nothing. But we have to make sure that this makes sense, and that it’s not “no-sense”.

I think this group rely on donors and not being in USA (NIH)/European Union (Horizon 2020) they probably don't get equal access to those funding sources. UK is leaving the EU so they'll presumably be in the same position.

I think an interested European parliamentarian would still ask a question submitted by email i.e. since it raises there profile. If you can think of any questions or other ways to try to get funding.
 

pattismith

Senior Member
Messages
3,931
I checked the RNA Helicase gene involved in the antiviral immune response:

Helicase MDA5, gene IFIH1

polymorphism:

rs1990760 homozygous TT Minor allele frequency 35-45% ENLIS/protein impact/missense
rs10930046 homozygous TT MAF 15-21%
rs57206768 homozygous GG MAF 9-10%

this one was found via ENLIS software:
rs3747517 homozygous CC MAF 67% protein impact/missense
 
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pattismith

Senior Member
Messages
3,931
another RNA Helicase gene involved in the antiviral immune response:

RIG-I-Like receptors, gene DDX58

polymorphisms:

rs12006123 homozygous AA MAF 20%
rs10971001 homozygous GG MAF 32%
rs78545528 heterozygous AG MAF 2%
rs73644982 homozygous CC MAF 4-8%
rs11795343 homozygous TT MAF 35-42%
rs17290242 homozygous AA MAF 15-17%
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
Re "rs numbers" not sure what that is
From MedScape:

"The rs number is an accession number used by researchers and databases to refer to specific SNPs. It stands for Reference SNP cluster ID. When researchers identify a SNP, they send the report, which includes the sequence immediately surrounding the SNP, to the dbSNP database. If overlapping reports are sent in, they are merged into the same, non-redundant Reference SNP cluster, which is assigned a unique rsid. More information is available in following link http://www.ncbi.nlm.nih.gov/sites/books/NBK44406/"
 

FMMM1

Senior Member
Messages
513
Thanks. Interesting, so is the idea to be able to use the rs number (code) to check for research re particular SNIPs?E.g. Neil McGregor (from memory) referred to relationship between Langerin and viral load.