Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Neil McGregor’s presentation at Open Medicine Foundation’s Community Symposium

Discussion in 'Latest ME/CFS Research' started by FMMM1, Dec 3, 2017.

  1. FMMM1

    FMMM1

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    Split from the thread "Rituximab Phase III - Negative result"


    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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  2. Learner1

    Learner1 Professional Patient

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    @FMMM1 Great job! Can you put a link to the slide, or to Neil McGregor's presentation, please?

    Thanks!
     
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  3. FMMM1

    FMMM1

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  4. fingers

    fingers Senior Member

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    SW Endland
    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.
     
  5. Learner1

    Learner1 Professional Patient

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  6. pattismith

    pattismith Senior Member

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    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
     
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  7. FMMM1

    FMMM1

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    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.
     
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  8. FMMM1

    FMMM1

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    Haven't seen a paper. I've only seen the symposium presentation (YouTube). No idea about kidneys / electrolytes.
     
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  9. FMMM1

    FMMM1

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    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.
     
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  10. pattismith

    pattismith Senior Member

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    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:

    [/QUOTE]
     
    Last edited: Dec 6, 2017
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  11. FMMM1

    FMMM1

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    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.
     
  12. pattismith

    pattismith Senior Member

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    @Learner1

    I browsed my 23andme snp for the CD207 gene (Langerin)
    and only found one polymorphism (homozygous) for
    rs10489990 (Minor allele frequency 28-30%) ENLIS: protein impact (missense)
     
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  13. pattismith

    pattismith Senior Member

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    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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  14. pattismith

    pattismith Senior Member

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    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%
     
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  15. pattismith

    pattismith Senior Member

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    and another RNA Helicase gene involved in antiviral immune response

    LGP2, gene DHX58

    2 snp in 23andme datas, no polymorphism

    Other RNA Helicase "implicated in viral RNA sensing" that you can browse:

    DDX1
    DDX21
    DHX36
    DHX9
    DDX60
     
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  16. Learner1

    Learner1 Professional Patient

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    Thanks for your hard work @pattismith . I'll check it out!
     
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  17. Learner1

    Learner1 Professional Patient

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    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/"
     
  18. FMMM1

    FMMM1

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    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.
     
  19. anni66

    anni66 mum to ME daughter

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    scotland
    Consider liver function too if electrolytes are out of kilter @mariovitalli
     
  20. Learner1

    Learner1 Professional Patient

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    Yes.
     

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