Professor & patients' paper on the solvable biological challenge of ME/CFS: reader-friendly version
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Which theoretical cause of CFS/ME do you believe to be true?

Discussion in 'General ME/CFS Discussion' started by Jesse2233, Feb 11, 2017.

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Which theoretical cause of CFS/ME do you believe to be true?

  1. Autoimmune

    21 vote(s)
    18.8%
  2. Smoldering pathogen

    11 vote(s)
    9.8%
  3. Brain dysfunction

    1 vote(s)
    0.9%
  4. Metabolic dysfunction

    9 vote(s)
    8.0%
  5. Gut dysfunction

    7 vote(s)
    6.3%
  6. Psychological

    1 vote(s)
    0.9%
  7. Epigenetic

    2 vote(s)
    1.8%
  8. A combination of the above

    38 vote(s)
    33.9%
  9. None of the above

    5 vote(s)
    4.5%
  10. I don't know

    14 vote(s)
    12.5%
  11. Autonomic nervous system

    3 vote(s)
    2.7%
  1. Jesse2233

    Jesse2233 Senior Member

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    These options are oversimplifications, but it will still be interesting to see if there's a consensus
     
  2. Gijs

    Gijs Senior Member

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    I think there is not one single cause for a heterogenic disease. You forgot the most importent one: The autonomic nervous system (ANS). There is where the action is :) At least for a subgroup, not all CFS/ME patiƫnts! That is my opinion.
     
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  3. mrquasar

    mrquasar Senior Member

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    My own pet theory (based on only partial understanding of the latest discoveries, granted) is that an initial infection or other insult prompts the immune system to release antibodies, which end up mistakenly attacking the membrane of mitochondria within the cell, leading to disruptions in energy production. With rest, inflammation decreases, which leads to a lowering of the release of antibodies and thus less energy disruption, i.e. symptom improvement. The opposite occurs with exertion, leading to P.E.M. Rituximab is so effective because it indirectly decreases the level of these malfunctioning antibodies.

    Again, this is just based on my somewhat casual studies of the science. My brain fog has prevented me from studying it further, so my theory probably has some flaws in the biochemistry involved. But just throwing it out there.
     
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  4. erin

    erin Senior Member

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    What you've said there is I find very logical. Dr. Chaudhuri said this too. Though he said the virus goes into your DNA and changes its programme or something like this. I can't articulate it well. I think when the virus is in your DNA that you're body thinks you're under attack by a foreign body and then immune system goes haywire. But is it attack the mitochondria or attacks the other body cells and mitochondria is exhausted, constantly supplying ammunition to this war.
     
  5. arewenearlythereyet

    arewenearlythereyet CURRENTLY MODERATED FOR NOT BEING SERVILE

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    I think that a lack of immunomodulation from vitamin b12 has something to do with it. I also think oxidative damage to the mitochondria is another effect once things start to go wrong with the Krebs cycle. I have no idea as to why some people are more prone to getting ill than others and why it affects women more than men. I think this is a similar disease to ms. I don't believe in the leaky gut, killer virus, mitochondrial virus theory due to an overwhelming lack of evidence. I suspect that genetic factors may be a factor but not from viral infection.
     
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  6. DeceptivelySlow

    DeceptivelySlow

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    I suffer from chronic malaise which I am 99% sure is due to a relatively small neural deficit in my ANS; I could certainly see myself completely dysfunctional had more of my ANS been affected.

    This makes me believe the ANS is at least a significant player in some CFS/ME symptoms. Of course the big question is what is the cause of the ANS not functioning properly and what else is being affected?

    I know the ANS does far more than the medical community truly understands.

    From my experience, I can say beyond a shadow of a doubt that any doc that calls it a conversion disorder is absolutely full of it.
     
    Last edited: Feb 12, 2017
  7. mermaid

    mermaid Senior Member

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    I swing between going on ME forums and going on thyroid forums as I was diagnosed with underactive thyroid long before I got the CFS/ME diagnosis (as they called it). The thyroid 'camp' do not believe in CFS but think it's a badly managed thyroid and adrenals. I am beginning to think that the thyroid lot may be right in my case. I seem to have pretty well fixed some of the worst symptoms re my gut (or managing it well at any rate), and my dysfunctional immune system (herbalist seems to have fixed this). Just that has taken about 6 years.

    Now I am working on my thyroid and adrenals again in the hope that will fix my remaining symptoms which are now reduced to frequent migraine aura and lack of stamina, which can fluctuate depending on all kinds of factors. Maybe if you have Hashimoto's (which I assume is what I have, but no one in the UK ever calls it that or checks the antibodies), for over 20 years, then things are never going to be quite 'fixed', just improved hopefully for me by the time I have finshed.

    That doesn't stop me believing that ME can be something else though. Clearly it is for some people.
     
  8. erin

    erin Senior Member

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    @mermaid, Hashimoto's is as you know well is an autoimmune disease. It is not just badly managed thyroid and adrenals. The antibodies are the proof. You can fix it for a while (that it take one so many years, in your case its 6 years) and then it's not fixed again. Because antibodies change the game, again. So, Hashimoto's is not fixable, it's a myth that supplementing tyroxine hormone's going to sort Hashimoto's hypothyroid. It's organ failure due to autoimmune disase.
     
  9. purrsian

    purrsian Senior Member

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    This may be the case for some people, but it's definitely an oversight for them to assume that all CFS cases are just badly managed thyroid and adrenals. I have continually had both tested over the years, always annoyingly perfect. I think that people with a certain disease, like doctors with a certain speciality, tend to see things through the lens of that disease/speciality. It's not necessarily a bad thing, but it's important that they don't overlook other things and make people feel bad for not believing or fitting in to every word they say.

    I answered "a combination of the above", as a believe many aspects are at play. It's hard to decide what could actually be the root cause. I think that the combination of the various aspects mentioned all add up to our symptoms - for me, it's ANS and metabolic dysfunction as the main issues. I somehow don't think psychological will get many votes here :D
     
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  10. TrixieStix

    TrixieStix Senior Member

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    that is the theory i am favoring as well given what current research is showing. Plus the aspect of our indiviual genome/microbiome affecting which symptoms each person ends up having/not having.
     
    erin likes this.
  11. GhostGum

    GhostGum Senior Member

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    Vic, AU
    I think it is all of the above and including issues with the autonomic nervous system all partly to do with long term physiological and brain dysfunction due to modern living. I should note I am ME/CFS coming up on 16 years and just by luck I ran into the right person several months ago who explained in great depth the complications of posture, physiological alignment and the power of floor laying, getting away from soft mattresses, pillows and natural sleeping positions to allow the whole muscular and nervous system to correct itself naturally, to open it all out and pathways out so processing and healing can take place much more efficiently. Hundreds of hours on the floor, soft and hard has changed my life and am on the way to total recovery finally. I do need to post all this sometime but avoid the computer nearly totally these days, for the floor, getting sun and being active.

    Wim Hof method has been massive too, this also changes the physiology and nervous system over time back more into a natural state, opening out the system again so things can get processing and clearing out properly, Wim talks a bit about that below.

    I think light environment is massive too now, Dr. Jack Kruse really opened my eyes to this and how incredibly detrimental artificial light and device use is. This has been discussed many times on forums but Kruse is like a sledgehammer to the face on how serious it is and how vigilant one must be.

    I have come to think it is much to do with environment and conditioning over time (even from childhood physical development, sitting and sleeping), then when people initially get ill they run for the comfy bed or couch and perpetuation begins, to the point of total sensory and nervous system dysfunction where nothing is signalling connecting or processing properly and everything becomes painful and disruptive.

    Of course I would never say this is the answer for everyone, and some have very distinct pathogen onsets and ongoings, but then one has to ask after years, and maybe look integratively at why the body never manages to deal with it or process properly.

     
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  12. RYO

    RYO Senior Member

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    I believe it is better to acknowledge our lack of understanding. It is heartening to hear Prof Davis's comments about recruiting researchers who view this illness from "out of the box" perspective. I am encouraged and hopeful that good scientific research will start to lay the foundation toward a better understanding of this miserable illness. My opinion is that we have only scratched the surface. Just consider how many decades researchers have poured over cancer and HIV research.
     
  13. mermaid

    mermaid Senior Member

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    @erin Yes, I was probably just using shorthand there, but of course the thyroid and adrenals are key - why did the antibodies start attacking in the first place? (actually in my case it did seem to be triggered by a long period of stress).

    It does seem possible from what I have read that some people who are in the early stages can reverse Hashimoto's but that involves a whole lot more work than just taking Thyroxine!

    As far as I can see however for myself, having been ill for over 20 years with it, I will always need thyroid medication because the autoimmune attacks gradually destroy the thyroid gland itself. In that sense, yes, it's organ failure and I am guessing that my body will never function as well now simply on hormone replacement, as perhaps other organs have been damaged also along the way.

    Unfortunately once you have one autoimmune condition you tend to get others so some people get very much more damaged. In my case I only seem to have acquired Lichen Planus on top and a lot of gut issues which are now heaps better after a lot of work on them. I am 65 this year though, so old age conditions are beginning to develop also - not all linked with Hashimoto's I think though.
     
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  14. mermaid

    mermaid Senior Member

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    @purrsian
    I agree! I have had debates on this on their pages over the years. However they may well be right about SOME rather than ALL.

    Having tried to get my thyroid/adrenals fixed via any kind of conventional route - well it's been well night impossible, as mainstream endocrinologists only recognise adrenal crisis as far as I can see. As for the thyroid side, well most of them believe that TSH tells us all there is to be known. So people with thyroid problems are faced with almost as many barriers as those with ME/CFS - just a one size fits all medication.

    I have had 3 salivary cortisol tests done over 4 years, and they all showed low cortisol production, but this test would not be recognised, or anything suggested, other than rest I guess. I seem to recall that even the psychs such as Wesseley showed that people with CFS had low cortisol.
     
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  15. Barry53

    Barry53 Senior Member

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    I said I don't know, because so far, with all the best brains working on this, no one yet knows.
     
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  16. erin

    erin Senior Member

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    The question "why did the antibodies start attacking in the first place? " is very important.

    I believe the answer to this is the virus we contracted that started the ME had changed the immune system structure somehow. If you have anti bodies, this is not a endocrine disease primarily, It is an autoimmune disease causing endocrine failure.

    Not being able to cope with stress is an interesting issue. I felt that I was reacting stress much differently after contracting ME. I felt even minor stress was creating huge reactions. I am not at all assuming this was or could be the case with you or others. I'm just saying my experience. I some how feel antibodies attacking caused the stress. It's not the other way round.


    My early stages of Hashimoto's, I now can see was hyper thyroid. I was loosing weight, strange bowel movements, terrible palpitations. At that time I had no idea about Hashimoto's, never heard the name. I was very frightened that I was having a heart problem. I went to see a cardio, he prescribed beta blockers to protect the muscle and passed me to the endo. The thyroid tests were normal, I had no treatment. I was so sick I went for a private endo, he tested the anti bodies and also a mr scan showed damaged thyroid gland, the structure proved be Hashimoto's. But again he did not put me on thyroid supplement. He insisted until the tests are abnormal I won't be taking thyroid supplement. And now my thyroid gland is caput, I am so sick and I don't even respond to thyroid supplement. It is not helping me as anti bodies are changing the balance of supplementing.


    I'm sorry that your thyroid gland is destroyed, were you told that this is definitely the case? Some people reversed this somehow, I am reading so much about the success stories but this is not happening to me unfortunately. Not only medication, I've been on a very strict diet too. I now have some abnormal liver function to deal with, I'm frightened that other organs are failing too. But all these are secondary to the actual disease, ME.


    I have both Lichen Planus and Lichen Sclerosis. It's awful.

    65 is not old age, seriously, I see my neighbour who is in her 70'ies looking after some 3 years old very lively grandson. She's running after him no problems. I see so many older people in much better health. Our health is bad not because we're old. Because we have ME, our immune system's attacking our body.
     
    Last edited: Feb 12, 2017
  17. mermaid

    mermaid Senior Member

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    I have just learned how to do this quotey thing. I am now so proud of myself!
    To the point though.....it's possible that my virus thing that triggered it all of goes back to me having glandular fever at aged 13. I cannot think of a virus otherwise, as my thyroid issues came out of the blue when I was around 43. I had been pretty healthy in my 20s/30s, apart from IBS (which suggests to me now that I would have been better on a restricted diet if I had known anything about it - no internet then). My husband was suicidal at the time the thyroid issues began, and I had had months of coping with that, after years more of stress behind me related to his illness (at that point unidentified but probably bipolar related). I did have an autoimmune illness with my last pregnancy but that was about 10 years before and had stopped after the baby was born.

    Hmm. Yes, I think I see. Having an autoimmune illness and having little to help it is enough to make anyone stressed!

    Your experience is dreadful but sadly not unique. I seem to have been one of the luckier ones as 20 years ago the GPs had more freedom to prescribe in the earlier stages, and I had a sympathetic GP who saw my TSH moving up and started treatment quite early. Thyroxine of course, which after 5 years or so ceased to work for me. Looking at alternative health people they advise going gluten free at the very least, (and often dairy free) to help stop those antibody attacks but there can be other reasons other than food. Mainstream medicine does not recognise those approaches and I only heard of this a few years ago.

    Actually I have never been diagnosed with Hashimoto's so maybe I don't have it, but from what I have read and with my autoimmune background, it would be surprising if I did not have it. They don't bother to check antibodies in conventional medicine any more, so I have never had them checked. So it's possible that my thyroid gland has not been totally destroyed, but certainly synthetic T4 was not working for me, and I used T3 for 4 years. I am now trying NDT as I have discovered that I have osteoporosis, and the timing of it happening seems to be linked to me being on T3 only - though others tell me there is no connection.

    I am so sorry to hear of your other organ issues - your liver etc. That must be very frightening.
    To have both of those is very grim. I am so sorry - you must be in so much pain. I seem to have been lucky enough to have stalled my LP for now. I had it on my body, but that ended and it was only in my mouth for years. Cutting things from my diet helped (gluten, sugar etc) and it was interesting that I was beginning a flare the other day when changing from T3 to NDT. Finally I had to use some hydrocortisone cream, (On advice of someone) and within 3 days the LP flare calmed down, so clearly I am very short on cortisol. have you ever had the salivary cortisol test done to check that out?

    In the past year I have had things happen to me that are not related to ME.
    1. Detached retina - sight saved in the nick of time by eye surgeon after a dash to an eye hospital a long way off. Now have fast growing post-op (ie normal for this op) cataract which needs removal soon (I hope as I can only see in one eye and THAT eye was operated on for macular hole 7 years ago)
    2. Had to have colonoscopy after a scare from a test - though mercifully all was OK.
    3. Discovered that I have osteoporosis after an Endo sent me for a bone density test, when he said that he believed I was taking too much thyroid hormone (the T3 - had OK BP/pulse/temp but apparently says that's no measure of being on right amount, though thyroid community of patients disagree with him - but hey ho I DO have osteoporosis apparently, but mercifully no problems with it yet)
     
  18. unto

    unto Senior Member

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    absolutely viral origin (still infectious) .....
    renewed, persistent and increasingly active infection ....
    contagion should be through bodily fluids (including saliva).
    just look at the history and medical reports of the first outbreaks ...... now everything is diluted and confused ........ and we sufferers often we have been complicit in this chaos
    Unfortunately
     
  19. unto

    unto Senior Member

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    I think ke: repeaters cellular phones, microwave etc. can be certainly the aggravating, that is if you already have ME in mild form can aggravate the disease if you expose yourself to this radiation .......
    if you have the disease even if you expose yourself not contrai, you can have similar disorders
    temporary (that is, if there is more exposure noise disappears) but not the ME
    as I think happened to the American and British military in the Gulf War, that is, departing were already sick with ME ......
    the continuing spread of the disease leads to the increase of diagnoses with the complicity of aggravating factors such as microwaves .........
     
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  20. sorin

    sorin Senior Member

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    Why there is no option like "Retrovirus" ?
     

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