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In Brief: Autoimmunity and ME

Discussion in 'Phoenix Rising Articles' started by Firestormm, Oct 8, 2013.

  1. Phoenix Rising Team

    Phoenix Rising Team

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    View the Post on the Blog
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    Svenja, MeSci, waiting and 4 others like this.
  2. justy

    justy Senior Member

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    Agreat article, thanks Andrew! I'm looking forward to the publication of Fluge and Mellas work - any ideas of a timescale for this?
    I am always struck by how similar to other autoimmune diseases M.E is (especially for me) at times looking very much like Lupus and at others like MS. Also as other autoimmune diseases can be relapsing and remitting which could explain this feature in some PWME (just as there is a relapsing remitting subtype of MS)

    The general finding of low levels of autoantibodies in some PWME bothers me though as we know that for exam[ple those with thyroid antibpodies (hashimotos) may be under or incorrectly treated and due to lack of proper treatment be diagnosed with M.E/CFS, the same is true for ANA - if i had low levels of these, alongside my set of symptoms i would not allow a diagnosis of M.E, but would strongly suspect i DID have Lupus. Again if you go on Lupus boards you will see many many patients that have fought for years for a diagnosis - some of whom actually have anti body negative lupus (it is possible) The internet is full of stories of various missed diagnoses and people undiagnosed for years. I worry that many of these findings are in fact people who have a missed autoimmune disease because perhaps they have an atypical presentation.

    Finding and pinning down clinical signs, ymptoms and biomarkers for M.E/CFS and then using strict criteria for entry into trials should help to sort this out, but at the moment it is still a bit of a nightmare.

    Hope my ramblings make sense
    Justy.
    MeSci, aimossy, rosie26 and 1 other person like this.
  3. Legendrew

    Legendrew

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    As far i'm aware it's expected any week now, doubtless we will have articles discussing the findings here at Phoenix Rising as soon as we can!

    Yes, the one thing that strikes me with ME is the clinical similarity to many existing autoimmune diseases; the female predominance, relapse/remitting nature and autoimmune type symptoms ought to be telling us something! Suffice to say that I personally am looking forward to the latest Fluge and Mella paper publication, along with the IiME UCL trial and the phase 3 trial which are both expected to start early next year.

    With regard to the general autoantibody findings I believe it is common in many autoimmune diseases for antibody levels to many unrelated antigens to raise due to the ongoing immune activation, it is therefore very difficult to pin down who has what unless the results prove very conclusive - and as you rightfully say, some people have Lupus and other conditions with a seemingly normal antibody reading which only helps to further muddy the water!
    justy and aimossy like this.
  4. aimossy

    aimossy Senior Member

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    Great article Andrew!
    Interesting comments too justy it did make sense to me.
    A Rheumatologist has told me I have 60 percent chance of developing lupus.
    I do feel that they will refine autoimmune diagnosis overtime and treatments.
    How would you know or not if some people that are fighting for a diagnosis of lupus may have something not found yet maybe even ME.
    There are a serious amount of autoimmune diseases. The rheumatologist said over 150 to me at the time and said that I could have CFS. Then he said to me that we may find that(CFS) to be a autoimmune disease at some stage.
    He was trying to convey how difficult it can be I think.
    We have true hope though I feel and we are getting more info about ME all the time.
    Which is fantastic!

    Oh geeze too fast.

    Yours to legendrew I just figured who is who.tehe
    Hanging out for publishing im excited:)
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  5. Marlène

    Marlène Senior Member

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    "Another hypothesis is that autoimmunity may be targeted towards molecules known as vasoactive neuropeptides."
    Interesting! Where can I read more about this? My VIP are undetectable low in number.
  6. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Just did a quick internet search and found this.

    There may be more recent ones.
  7. redrachel76

    redrachel76 Senior Member

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    The ciguatera epitope or ciguatera like substance being produced by the body of patients is also said to prove that this is an autoimmune desease. It's a shame Invest In ME never publised this bit of research or publicise it now because that came even earlier than Fluge and Mella's research. It is another proof that this is autoimmune, on top of the female/male ratio and the relapsing remitting nature.
  8. voner

    voner Senior Member

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    what a clear and well written article! thank you.

    i too am interested in .....

    "Another hypothesis is that autoimmunity may be targeted towards molecules known as vasoactive neuropeptides."

    I always wonder how much they autonomic system dysfunction underlies many symptoms.

    thanks again.
    Legendrew likes this.
  9. knackers323

    knackers323 Senior Member

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    Hi could you tell me more about the ciguatera toxin findings. I have never heard of this. Thanks
  10. Simon

    Simon

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    Nice work, Andrew - thanks for the clear primer on this important area.
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  11. Legendrew

    Legendrew

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    Thanks for the compliment. With regard to vasoactive neuropeptides, they are an incredibly exciting area of research and have the potential to explain a lot of the symptoms. As you mention they have a role to play in the autonomic nervous system however they also play roles generally in the nervous system and the vascular system so you almost have a 'double whammy' with regard to ability to cause symptoms. In the future it's likely there will be further articles in this series exploring both the vascular and nervous systems which might be worth a read if you're interested in these areas - stay tuned!
    SOC, rosie26, justy and 1 other person like this.
  12. GcMAF Australia

    GcMAF Australia Senior Member

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    Lyme Disease is known as the great imitator, Possibly most diseases are a on a spectrum of these inflammatory diseases. i forget the researchers but about 8 years ago they used a CFS treatment for cancers with success. Also i personally have used CFS treatments for cancer.
    There is a recent paper about bacteria in cancer, as well as many older ones.
    http://www.ncbi.nlm.nih.gov/pubmed/?term=Bacteria-Human+Somatic+Cell+Lateral+Gene+Transfer+Is+Enriched+in+Cancer+Samples
    GcMAF was originally used for cancer but is now being used for CFS.
  13. redrachel76

    redrachel76 Senior Member

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    It's just that in 2003 they discovered that the body in CFS patients are creating a toxic substance that bothers the cells in some way I don't understand. This toxic substance was discovered using a test for ciguatera. So they called it the ciguatera epitope.
    Ciguatera is a poisonous toxin produced by a fish. The test for ciguatera came out high in CFS patients even though we don't have ciguatera poisoning.
    This was proof of autoimmunity because here you have the body producing a chemical that attacks the body itself, or body cells.

    Well that is my understanding. I might have got it all wrong. There are a few links on it here:

    http://forums.phoenixrising.me/index.php?threads/ciguatera-toxin-in-cfs.4445/

    Anaesthesia - they made an anaesthesia protocol for M.E patients because they found that this ciguatera epitope substance uses a specific channel in cells and so they recommend an anesthetic that does not block the sodium channel.
    http://www.ncf-net.org/patient-physician.htm

    If you google Hokama, Hawaiee ciguatera cfs you can find the original paper although it is too hard for me to understand. It was first published in 2003. I think it was at the university of Hawaiee.
  14. knackers323

    knackers323 Senior Member

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    If this is true for at least the majority of cfs'ers, why isn't it a case of mystery solved?
  15. alex3619

    alex3619 Senior Member

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    There are another class of immune cells in this picture. Gamma delta T cells. Like macrophages or NK cells they react to specific substances. So their reaction is innate. Yet they are capable of replication if stimulated, increasing the response to a particular substance. So they are adaptive. They also have a very important function in initiating tissue repair, particularly in the gut. Finally while they can trigger an immune response, they can also suppress an immune response, and are thought to do this quite a lot in damaged tissue and the gut.
    MeSci likes this.

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