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Autoimmune conditions

Discussion in 'General ME/CFS Discussion' started by digital dog, Oct 5, 2015.

  1. digital dog

    digital dog Senior Member

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    How many of you have a family member with an autoimmune condition? I am really beginning to wonder if we are all genetically programmed to get ME/CFS and that all it takes is a trigger to set it all off (immunisations, virus, accident, drugs etc).

    In my family everyone bar two family members have an autoimmune condition (that's 14 members of my immediate family that have crohns, RA, CFS, Asthma, pernicious anaemia etc etc).

    I could also throw in autism, OCD etc as there seems to be a higher prevalence of people with family members suffering from these conditions too. My daughter has mild OCD.

    DD
     
    justy likes this.
  2. justy

    justy Donate Advocate Demonstrate

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    My Mother has M.E and hashimotos, I have a female maternal cousin with M.E, and my daughter has M.E/Lyme and co (possibly lifelong from me)
     
  3. digital dog

    digital dog Senior Member

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    I wonder if a substantial percentage of the population has this vulnerability but doesn't get exposed to anything dangerous. Or perhaps they are moderately well all their life but get an autoimmune condition when they are really old.

    I suppose it doesn't really explain the cluster outbreaks (although perhaps if a family history was taken of those that contracted(?) ME it would explain more.

    I imagine all this has been looked into but I was curious because the rituximab trails seem to indicate that ME could be autoimmune. Thats what I read anyway.

    Im very tired today so please forgive me if all this has been said time and time again.

    Justy, since John Caudwell's recent media frenzy on lyme they will probably look more into whether lyme can be transmitted from the mother. He is on a MISSION to help all of you with lyme. I think he will help all of us with ME too.
     
  4. digital dog

    digital dog Senior Member

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    In my posts I put ME and CFS together....I do realise how different these are. Sorry if I offended anyone.
     
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  5. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    A lot of ME-patients has vitamin d deficiencies, which studies has linked to a whole range of autoimmune illnesses, as this often lead to t-cell deficiencies as well. This is the case for me. Could be that this predisposed me to ME.
     
  6. Effi

    Effi Senior Member

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    @digital dog interesting question. I have been thinking about this too. I have ME, my mother has had eczema + asthma her whole life (and a range of 'inexplicable' health issues that never got a label). Her father died of ALS, his father had RA. Is this a coincidence, i.e. are autoimmune illnesses just very common, or is there a strong genetic component towards problems with immunity?

    Couldn't it be that we just don't know enough about immune illnesses yet to really connect all the dots? I can't help but think there are clues to be found here...
     
    rosie26 likes this.
  7. gregh286

    gregh286 Senior Member

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    Londonderry, Northern Ireland.
    yep.
    i have idiopathic facial angioedema.
    like most autoimmune conditions its exaggerates at night during sleep.
    immune system works on circadian rhythm
     
  8. nandixon

    nandixon Senior Member

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    A significant subset of us, though, while low in the commonly measured 25-hydroxyvitamin D3 derivative, are actually high in the active form, i.e., 1,25-dihydroxyvitamin D3 (aka calcitriol), and thus are more likely to be immunosuppressed already and feel worse taking vitamin D. (Vitamin D being a potent immunosuppressant.)

    See, for example, this thread, and others, for more info:
    http://forums.phoenixrising.me/inde...lement-tolerance-and-calcitriol-levels.37345/
     
    sarah darwins, Marky90, maryb and 2 others like this.
  9. Eeyore

    Eeyore Senior Member

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    Well, that assumes that we don't want to be immunosuppressed - if the rituximab trials aren't a statistical fluke (and I doubt they are), then immunosuppression would be a desirable state (to a degree of course - but you aren't going to get that suppressed from vit D).

    My family has some history of autoimmunity, but no first degree relatives and only a few 2nd degree. My mom had a POTS/ME like syndrome for a few yrs in her teens, but mostly recovered. She has POTS symptoms and some degree of mild peripheral neuropathy but nothing that's held her back much in life. She's generally in better health than most people her age and still very active, no exercise intolerance at all.

    I have 2 uncles with IBD (and per 23andme have a lot of risk factors for it, but so far don't have any hint of it). One side of one side of my family has a fair bit of autoimmunity. 1st cousin once removed has SLE (i.e. parent's first cousin), great aunt had PMR, and another great aunt had a peculiar acute onset demyelinating disorder that was fatal. It seemed to result in some sort of a capillary leak syndrome along with peripheral neuropathy, definitely sensory, not sure if it had motor and autonomic components. Grandfather had Meniere's Disease.
     
  10. nandixon

    nandixon Senior Member

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    No, it assumes that some of us may not want to be immunosuppressed. You're making it sound like there's only one version of ME/CFS.

    And although rituximab is generally an immunosuppressant, it doesn't have to be. It's easy to envision a scenario where an alleged pathological autoantibody, or simply a bad B-cell chemical signal, could result in increased Treg activity, for example. (The autoantibody might be either antagonistic or agonistic against a Treg cell receptor to effect this.) Removal of the antibodies or signals by depletion of B cells with rituximab would then be net immunostimulatory.

    I think you've mentioned a number of times that you don't experience fatigue (which is something that can be further exacerbated by vitamin D in a subset of us). Note that this means that you don't appear to have the same phenotype as the ME/CFS patients being studied in the rituximab trials. (In a video interview several months ago, for example, the Norwegian researchers described their patients as "feeling like they've run a marathon.")

    Indeed, the Primary Outcome Measure for the current trial is with respect to fatigue:
    B-lymphocyte Depletion Using Rituximab in Chronic Fatigue Syndrome/ Myalgic Encephalopathy (CFS/ME). A Randomized Phase-III Study. (RituxME)

    So it doesn't make sense to me that you would cite to the ME/CFS rituximab trials for your personal condition, unless you've determined in some other way that you're likely to have an autoimmune disease amenable to rituximab. (And actually, not having fatigue is somewhat diagnostically problematic there as well, since across the several dozen known autoimmune diseases, fatigue is generally the most debilitating symptom, probably because it's the least treatable. See this thread: Profound, Debilitating Fatigue Found to Be a Major Issue for Autoimmune Disease Patients in New National Survey)
     
    Sidereal likes this.
  11. daisybell

    daisybell Senior Member

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    My maternal grandfather had MS. My father has autoimmune issues. So I have increased risk from both sides of the family!
     
  12. ahmo

    ahmo Senior Member

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    1st degree relative w/ MS on each side of family. Serious RA in father's family. Mo asthma. Me: Hashimoto's, frozen shoulders, said to be autoimmune.
     
  13. rosie26

    rosie26 Senior Member

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    I can't think of anyone on my mother"s side of the family who has an autoimmune disease and she is one of 10 children, so, I have loads of relatives on that side and they are all a healthy bunch (should have been me too). One did have Crohn's Disease though and there is some asthma on this side of the family but that's about all. On my father"s side, I have recently learned my aunty has SLE. Everyone else seems ok.
     
    Last edited: Oct 5, 2015
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  14. Eeyore

    Eeyore Senior Member

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    I think there are variations in ME, as in any illness, but I think it's one illness - or at least, that all correctly diagnosed patients share a final common pathway producing symptoms. There are probably a variety of initial triggers. Some appear to be infections, some vaccines, some even appear to be toxic exposures (such as organophosphates, like the Countess of Mar).

    One can imagine such things, but there is no evidence that it's immunostimulatory in any patients to date, and it seems mechanistically unlikely. One can postulate a way any drug can do anything - one can imagine a lot of things, but that's not science unless it's tested. What is known about rituximab universally points to it having immunosuppressive properties. The burden of proof is on the person suggesting otherwise.

    No, I have never said that. I don't believe fatigue is the right word to describe ME though, and I do not believe it defines the illness. I think it's more appropriately described as delayed onset exertional intolerance. Fatigue is found in many illnesses. Exertional intolerance is found in other illnesses - such as heart disease - but it is immediate onset, not delayed. Delayed onset exertional intolerance is unique to ME, and is pathognomic for the illness. Having fatigue does not mean one has ME - but Fluge and Melle are only taking patients in the trial who meet the CCC.

    I meet the canadian consensus criteria for ME. I don't believe in the use of the term CFS - I think it's just a poor attempt to define an illness that was already defined much better and much earlier. Fluge and Melle are using the CCC as well. Most serious researchers who have a clue about ME are using the CCC - very few now use Fukuda or Oxford (I think Wessely still likes Oxford...) F&M require all patients to have "Post exertional malaise and/or fatigue" - as per the CCC.

    "Evidence of ongoing, active and clinically relevant infection" is listed as an exclusion criterion for participants in the RituxME Phase III trial, as is "Known immunodeficiency with risk from therapeutic B-cell depletion, such as hypogammaglobulinemia." This is because it's too risky to treat them with immunosuppressants like rituximab that are known to exacerbate existing infections and increase the risk of new ones. So anyone who has active infection cannot compare themselves to the RituxME trial.
     
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  15. halcyon

    halcyon Senior Member

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    I assume you're referring to the delay due to what repeat CPET studies show, but in the various ME definitions there is not much talk of delay and most of the descriptions refer to the immediate effects of exertion, and/or the inability to even perform exertional activities in the first place. This was Ramsay's cardinal feature of the disease, not PEM.
     
  16. alex3619

    alex3619 Senior Member

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    I don't have autoimmunity as such in my family tree, but an uncle apparently died of Parkinsons.
     
  17. Eeyore

    Eeyore Senior Member

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    Understanding of what is meant by "fatigue" is actually a really important question, and one of the reasons that we have so many garbage studies on CFS where doctors just look for people who are tired. Most ME patients seem reasonably able to do physical activity, if probably somewhat below normal levels, but pay for it afterwards. This is really unique to ME, and when you explain it to a doctor, they will stare at you and look confused. They have heart failure patients whom they put on a treadmill and they simply can't exercise. That they understand - but when the ME patient gets on the treadmill and is able to exercise, they conclude that all is well, and they ignore the patient's explanation of what will happen the next day, week, etc.

    The other issue is sleep/fatigue. I have incredibly disordered sleep patterns. I can't sleep when I try, and then can't stay awake when I try! It's one of the most disruptive aspects of the illness for me, and I take a bunch of drugs to help, but it's still not good. I think almost all of us have disordered sleep. If someone says they sleep well w/o meds and wake up refreshed, and then stay up all day w/o any problems - that makes me really wonder about ME. There may be some, I can't say for sure, but it really seems inconsistent with what I've experienced and heard from others.

    Alex, I might have mentioned this already, but are you aware that in the Royal Free outbreak in ~1955 Ramsay had several relatively young people who progressed to Parkinson's (or something that looked like it) in a matter of days/weeks of getting ill? It was one of his earliest observations. My grandmother died of complications of the disease (in her 80's - although she had it for a few decades) - she didn't have ME as far as I know, but was generally unwell most of her life.
     
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  18. halcyon

    halcyon Senior Member

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    Indeed. If we're talking about Ramsay's description or the original London criteria, they meant fatigue as in muscle fatigue, not the general feeling of fatigue.
     
  19. buggier

    buggier Hating my life

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    Autoimmune conditions in the generation before mine includes: Diabetes, Graves, Psoriasis + Liver cancer brought on by Hep B
    I have Addison's.

    Based on my experience vulnerability to autoimmune conditions are inherited, and triggers in modern life with greater metal toxicities, mutating viruses etc. are setting it off earlier and earlier in every subsequent generation.
     
  20. SOC

    SOC Senior Member

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    There is no history of autoimmune disease in my family, but we have at least three cases of ME diagnosed by multiple top ME specialists. None of us present as autoimmune, but of course that doesn't mean there isn't something autoimmune going on that no one has detected yet. We fit the immune deficient subset of ME much more than the autoimmune subset. From my perspective, the idea that all ME patients have autoimmune disease is still highly hypothetical. I do think it's likely, however, that some of us -- possibly many of us -- do have autoimmune disease. I eagerly await further research on the subject.
     
    rosie26 likes this.

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