1. Guest, the two part 'News in Brief' for the week beginning 5th April 2021 is here.
    Dismiss Notice
  2. Welcome! To read the Core Purpose and Values of our forum, click here.
    Dismiss Notice

ME/CFS as a hyper-regulated immune system driven by an interplay between regulatory T cells & chronic human herpesvirus infections (2019) Nacul et al.

Discussion in 'BioMedical ME/CFS Research' started by Cheshire, Nov 5, 2019.

  1. Cheshire

    Cheshire Moderator Staff Member

    Messages:
    4,256
    Likes Received:
    22,781
    Nuno Sepúlveda, Jorge Carneiro, Eliana M. Lacerda and Luis C. Nacul

    https://www.frontiersin.org/articles/10.3389/fimmu.2019.02684/abstract

    Study made with the UK ME/CFS Biobank
    Full text not available yet, will be published soon.
     
    Last edited: Nov 5, 2019
    leokitten, Ravn, JaneL and 32 others like this.
  2. boolybooly

    boolybooly Senior Member (Voting Rights)

    Messages:
    214
    Likes Received:
    1,322
    Interesting, this appears to be more specifically about what I have which is comforting to see.

    Makes me glad I backed the LSHTM biobank.

    ME specialists from CureME, apparently working on an NIH project.

    https://me-pedia.org/wiki/CureME

    My thanks to them all.
     
    Ravn, MEMarge, merylg and 5 others like this.
  3. strategist

    strategist Senior Member (Voting Rights)

    Messages:
    3,516
    Likes Received:
    35,647
    Are they saying my herpes simplex virus does more than occasionally give me cold sores in the face?
     
    Ravn, MEMarge and ukxmrv like this.
  4. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    8,758
    Likes Received:
    92,853
    Autoimmunity and chronic viral infections are recurrent clinical observations in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), a complex disease with an unknown cause.

    That statement seems a bad place to start. I am not aware of any basis for it.
     
    shak8, Jaybee00, Ravn and 8 others like this.
  5. boolybooly

    boolybooly Senior Member (Voting Rights)

    Messages:
    214
    Likes Received:
    1,322
    I am, that fits my CFIDS symptoms to a tee.
     
    merylg, MEMarge and erin like this.
  6. FMMM1

    FMMM1 Senior Member (Voting Rights)

    Messages:
    855
    Likes Received:
    3,331
    Yes as you pointed out recently there's no strong evidence for B-cell autoimmunity (rituximab failure) and not much for T-cell autoimmunity. So that just leaves chronic viral infections and so far studies looking for virus's haven't been finding much (Ron Davis etc. however he's only really covered one class of virus's - viral DNA, or RNA, but I can't remember which).
     
  7. borko2100

    borko2100 Established Member (Voting Rights)

    Messages:
    81
    Likes Received:
    411
    It might be autoimmunity after all. Then again, it might not be... At the end of the day we are still clueless after 40 years of research. I doubt that there's many other illnesses where research has been so incredibly unfruitful.
     
  8. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

    Messages:
    2,292
    Likes Received:
    16,580
    It'd be useful to see the final paper, I think. I presume/hope the hypothesis is based on actual findings at the Biobank, rather than wild guesses.

    Then we'd be able to see what basis there is for this theory and how likely it is to be right. Only time will tell.
     
    merylg, Ravn, MEMarge and 8 others like this.
  9. boolybooly

    boolybooly Senior Member (Voting Rights)

    Messages:
    214
    Likes Received:
    1,322
    They must be aware of the Rituximab results, agree will be interested to see what the full paper is saying.

    I am just "delighted" they are looking at chronic viral infection as a characteristic symptom of ME.

    https://www.meassociation.org.uk/20...-to-improve-symptoms-in-me-cfs-03-april-2019/

    I am pushed to understand how else I would get palindromic rheumatic pain in symmetrical patterns shifting through my joints over a number of years other than by an autoimmune reaction. If the people in the large Rituximab trial did not experience a relief of symptoms then it seems plausible to me we do not have the same illness.

    Though the 150 patient Rituximab trial used Canadian Consensus Criteria, CCC cohorts can include people with zero immune deficits, potentially different subtypes if not diseases from CFIDS. I honestly think we may have an apples and oranges problem.

    Besides which there is more to HHVs since they (egEBV) produce their own cytokines (IL10) which could do something similar in terms of turning down the immune response without invoking autoimmunity.

     
  10. Mithriel

    Mithriel Senior Member (Voting Rights)

    Messages:
    1,788
    Likes Received:
    14,325
    Unfortunately, that 40 years of research has had about as much funding as 1 year of MS research (maybe more but definitely not much) and much of that research has not actually been on ME but on fatigue states which may not be relevant.

    Also the patients being tested have been a rag tag bunch who may not have had ME in the first place because of the lax definitions used.

    It is hopeful in the sense that the cause of ME may not be any harder to find than any other disease if money and attention are focused in the right places.
     
    Simbindi, Perrier, dan6000 and 12 others like this.
  11. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    8,758
    Likes Received:
    92,853
    I have a feeling that this is a theoretical modelling paper, not a data based paper.
    I am not aware of any data to go with it.
     
    FMMM1, Ravn, adambeyoncelowe and 4 others like this.
  12. Hutan

    Hutan Moderator Staff Member

    Messages:
    13,052
    Likes Received:
    53,661
    Location:
    New Zealand
    How solid is the statement that an increased density and percentage of Tregs is observed in ME/CFS? Perhaps this is something they have noted from the biobank data? Will be interesting to see.

    For what it's worth, the one time my Tcells were checked, my number of Tregs (presumably the density) was above normal range. And CRP (one measure of inflammation) is always mildly above normal range. And 6 months after ME onset, I had constant cold sores (as in always had one) for about a year. These stopped with valacyclovir (and giving up work), although I still get one in each bad crash.
     
    ZeroGravitas, Ravn, MEMarge and 4 others like this.
  13. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    8,758
    Likes Received:
    92,853
    My information is that the Biobank team have found some differences in mucosa-associated invariant T cells (MAIT) but not T regs.
     
    FMMM1, merylg, Ravn and 10 others like this.
  14. Hutan

    Hutan Moderator Staff Member

    Messages:
    13,052
    Likes Received:
    53,661
    Location:
    New Zealand
    If that's the case, then their statement that it is observed that there are increased densities and percentages of Tregs in ME/CFS seems a bit odd.


    Here's some background info on some T cell types for those of us still with lots to learn:
    Development of unconventional T cells
     
    Ravn, MEMarge, wigglethemouse and 5 others like this.
  15. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    8,758
    Likes Received:
    92,853
    I agree.
     
  16. FMMM1

    FMMM1 Senior Member (Voting Rights)

    Messages:
    855
    Likes Received:
    3,331
    Alzheimer's https://www.healthrising.org/blog/2019/09/16/alzheimers-chronic-fatigue-fibromyalgia/?

    Lyme - http://simmaronresearch.com/2019/10/better-lyme-diagnostic-nih-strategic-plan/
    A lot of money has been spent on a diagnostic test and it hasn't been delivered yet ---- post Lyme disease could be ME of course!
     
    duncan, MEMarge and rvallee like this.
  17. Mij

    Mij Senior Member (Voting Rights)

    Messages:
    4,410
    Likes Received:
    22,997
    It would also be interesting to know the length of time these patients have been ill. My immune system has morphed over 30 years.
     
    Perrier, ukxmrv, duncan and 4 others like this.
  18. Lisa108

    Lisa108 Senior Member (Voting Rights)

    Messages:
    548
    Likes Received:
    3,915
    Location:
    Germany
    The full paper is out now (free access): Link
     
    Ravn, Michiel Tack, rvallee and 4 others like this.
  19. Ravn

    Ravn Senior Member (Voting Rights)

    Messages:
    1,324
    Likes Received:
    11,299
    Bump.
    Looks like it's a mathematical modelling paper.
    Above my head. What, in a nutshell and in plain English, does it say? And what relevance/implications does whatever it says have?
     
  20. FMMM1

    FMMM1 Senior Member (Voting Rights)

    Messages:
    855
    Likes Received:
    3,331
    All above my head too and I couldn't be bothered trying to understand it.

    None of the following may be relevant to the theory presented in this paper!

    I think one of the problems with the active virus theory is that Ron Davis etc. can't find viral DNA (not much done on RNA virus's yet). To be fair the same problem seems to occur in Lyme i.e. a lot of people considered to have with Lyme do not test positive http://simmaronresearch.com/2019/10/better-lyme-diagnostic-nih-strategic-plan/

    So it seems we need a theory to explain these negative tests and a pathogen theory.

    I think Bupesh Prusty is preparing a publication at the moment so here's hoping that this will help explain how we get from no detectable pathogen to ME.

    There seemed to a reasonable model [of a post infection fatigue type illness] presented at the EMERGE Conference (Feb 2019?) re a disease which affects people living near intensive goat farms in the low countries (Neherlands?). From memory the idea is that bacteria persist in bone marrow for years - maintaining the immune response.
     
    ZeroGravitas, andypants, Ravn and 3 others like this.

Share This Page