Volunteer opportunity: Organizing Phoenix Rising articles
This section contains all the articles that have been published by Phoenix Rising over the years. As you will see if you browse here, some of the articles are outdated--either the research has been superseded or retracted or the article features an event or campaign that is now in...
Discuss the article on the Forums.

What is your personal theory or understanding of ME/CFS?

Discussion in 'General ME/CFS Discussion' started by Jesse2233, Dec 9, 2017.

  1. Jesse2233

    Jesse2233 Senior Member

    Messages:
    1,930
    Likes:
    5,146
    Southern California
    I made a post recently covering the majority of major ME/CFS theories by researchers and doctors. But since patients and caregivers know just as much if not more than the pros, I’m curious what everyone’s personal theory or understanding is here.

    Feel to post as much or little as you’d like, but it’d probably be helpful to have a nice summary sentence or paragraph at the top hitting your main points.
     
  2. Omar88

    Omar88 Senior Member

    Messages:
    433
    Likes:
    296
    for me , I do believe its an infection agent that it was too strong to keep me in my bed for 3-4 months and now its taking over my body causing the fatigue ,pains and huge list of symptoms !

    after for years my body started to relapse in another way not like before , it feels that my body parts are falling due chronic inflammation and under what I believe chronic infection agent or multiple agents now since my immune system is comprised ( no fever since 2011, no cold or flue like other family member , multiple skin infections bacterial and fungal , warts , leukoplakia tongue ( white coating tongue ) )

    my cytokines results shows inflammation and high immune over active responds and no one knows for what !

    my ANA became positive in my 5th year and never went back negative but it doesn't indicate any other autoimmune illness after they did ran huge panel of autoimmune testing after it which all came back negative !

    no much ideas any more ,,,
     
    merylg, pattismith and Mary like this.
  3. Hikaru

    Hikaru

    Messages:
    39
    Likes:
    79
    Finland
    For me, I feel like the theories stating CFS is an autoimmune disorder hold the most weight. My immune system has been hyperactive ever since I developed CFS (which started with a flu-like illness), and it's become the norm for me to have elevated WBC, so that makes the most sense for my case. It's like I'm perpetually sick with something but there's nothing there, and when I do come down with something I feel 10x worse, like my body can't handle even a cold anymore.
     
  4. Rossy191276

    Rossy191276 Senior Member

    Messages:
    139
    Likes:
    350
    Brisbane, Australia
    This is how I reported my illness to my doctor in our latest consult:

    If I was to summarize my illness I would say: I have an inability to create physical energy/intolerance to physical exertion, causing muscle weakness particularly the upper legs, core, and chest (including muscular tremoring and talking/deep breathing/circulatory issues) and dysautonomia. Going outside of my physical boundaries (which is being bed bound) results in very severe systemic crash/shutdown and symptoms most associated with ME ICC criteria.

    The thing I most associate with is mitochondrial dysfunction but there are many theories that I have read which seem plausible to be causal factors of this dysfunction.
     
    alkt, percyval577, merylg and 2 others like this.
  5. hangininthere

    hangininthere

    Messages:
    73
    Likes:
    157
    USA
    I suspect my Chronic Fatigue Syndrome is viral in nature, since mine came after the flu/bronchitis. A lifelong virus. Or lifelong damage from a virus.

    Patti
     
    Last edited: Dec 9, 2017
    merylg and Tammy like this.
  6. Gijs

    Gijs Senior Member

    Messages:
    653
    Likes:
    1,333
    CFS is not one disease! I want make new subgroups like CFS type 1, CFS type 2 etc...
    We see problems with autonomic nervoussystem, immunesystem, energyproblems in mitochondrail and brain issues... We see a hyperstate type and a downregulation type of CFS patiënts.
    I think that the parasympathetic nervoussystem is broken, so CFS is a chronic state of overdrive from the sympathetic
    nervoussystem or a downstate regulation. Two types. The cause can be toxication, autoimmune or viral activation or genetic....
     
  7. David Jackson

    David Jackson Senior Member

    Messages:
    130
    Likes:
    179
    You're going to get some interesting responses here, you know...

    My opinion:

    There can be many different reasons why someone has no energy. Many of the CFS cases we see, though, I think are viral in nature.

    However: it's deeper than that. There's more to it than just having a virus; I think there is often some other kind of weakness in a person, sometimes in the subtle energies like the chakras, auras, etc. as there was with me. This weakness is what allows these viruses to get on top of us in the first place.

    Otherwise the udnerlying weakness can be in the physical body, in the form of missing nutrients from a generation or two of people who have not been eating right, or perhaps eating right, but even the 'right' foods were still deficient as they come from soil that is now deficient. Plus all the fluoride and rubbish etc in the water, WiFi in the air...
     
  8. HowToEscape?

    HowToEscape? Senior Member

    Messages:
    548
    Likes:
    735
    The disease doesn't care what I think.
     
    alkt, blueberry, arboretum and 11 others like this.
  9. CFSTheBear

    CFSTheBear Senior Member

    Messages:
    149
    Likes:
    644
    Initial infection / trauma. For whatever reason, body is like "fuck that", then you're left with reeling bodily systems.

    I'm deliberately broad about it because I think that to be wedded so clearly to one distinct idea is foolish at this stage, because it prevents enquiry down other avenues that may be useful.
     
    alkt, arboretum and hinterland like this.
  10. notmyself

    notmyself Senior Member

    Messages:
    364
    Likes:
    507
    Me/CFS for me is a name put to different illnesses that share simillar symptoms..The trigger in most cases i belive is a viral infection, but the fact that it can be so different from a person to another makes me think is not the same disease..some have nervous system dysfunction,other immune dysfunction, other brain damage,neuroendocrine an so on..i belive it will never be a treatment that will work for everybody and a definitve cause and biomarker will never be found that will fit everybody with this symptoms...Treatment should be individual ,prognosis,chances of recovery shouldn't be influenced by other people experiences and negative outcome from a given treatment...
     
    alkt, Abrin, merylg and 1 other person like this.
  11. andyguitar

    andyguitar Senior Member

    Messages:
    623
    Likes:
    934
    South east England
    ME comes from a rare species of fungi. Way it effects people similar to Ergot poisioning. Which is to act as a neuro-toxin and elevate serotonin levels. CFS includes people who have other illnesses ie anemia, endocrine disorders, allergies, which have not been discovered by their medical advisors. Out of those who actually have CFS, most become ill as a result of an adverse drug reaction. Serotonin realease agents being the most likley cause. So you could say that ME and CFS have somethings in common but the cause is different. I totally reject the "it's a virus" theory.
     
    Isaiah 58:11, merylg and notmyself like this.
  12. notmyself

    notmyself Senior Member

    Messages:
    364
    Likes:
    507
    interesting..so do you think antidepressants can cause cfs in some?
     
  13. Wonkmonk

    Wonkmonk Senior Member

    Messages:
    653
    Likes:
    881
    Germany
    As noted before, I also believe what we call CFS is not one disease, but several very different diseases that share many symptoms, most prominently a very pronounced feeling of fatigue and exhaustion. I believe there is a subgroup of CFS patiens in which the disease is caused by semi- or nonpermissive herpes virus infection (esp. EBV) throughout the body (Dr Lerner's theory).

    In this group (to which I think I belong), I believe there is a chronic state of nonpermissive or semi-permissive herpes virus infection that is taking over the body step by step, especially the heart, the brain and the kidney. Infected cells are dysfunctional, cell metabolism is compromised and cells are dying off via apoptosis. For some reason, patients' immune system cannot control or clear the infection, and it is spreading slowly throughout the body, thus creating ever greater dysfunction in infected organs and infecting more organs and tissues, e.g. increasing muscle pain over time.

    Once the infection has become more widespread throughout the body and the longer it lingers, the worse the symptoms get. Since the function of critical organs, esp. the heart, and metabolic function of the organism as a whole is compromised, increasing metabolic stress through excercise makes the problem worse. I also suspect that metabolic stress like exercise somehow helps the virus spread, e.g. by increasing the rate of apoptosis and thus releasing viral particles into the blood and nearby tissues. That's why patients get worse when they excercise, up to a point in which the system is in such a bad shape that hardly any metabolic stress can be tolerated.

    The good news: Antivirals seem to help (at least to some extent and very slowly).
     
    Mariesak, Rvanson, Abrin and 3 others like this.
  14. Diwi9

    Diwi9 Senior Member

    Messages:
    950
    Likes:
    3,373
    USA
    Subtypes are also complicated by staging, i.e. at what point of disease progression is an individual at? Lipkin and Hornig found that there seems to be over-activation in the newly-ill cohort, and immune exhaustion in PwME who have been ill longer.
     
    rosie26, Abrin, JeanneD and 3 others like this.
  15. Diwi9

    Diwi9 Senior Member

    Messages:
    950
    Likes:
    3,373
    USA
    An immune-mediated disease of the central nervous system usually initiated by a viral infection. Many people experience an acute phase and recover, PwME have immune systems that are unable to properly cope with the infection leading to a chronic phase.
     
    rosie26, JeanneD, merylg and 4 others like this.
  16. CFSTheBear

    CFSTheBear Senior Member

    Messages:
    149
    Likes:
    644
    Can you provide citation for any of these claims?
     
  17. PinkPanda

    PinkPanda Senior Member

    Messages:
    342
    Likes:
    905
    I think that there might be subtypes with different causes/ triggers.. but that the same or similar systems are impacted.
    Low pyruvate dehydrogenase and citric acid cycle function seem to be issues, maybe low G protein function and low glutathione,..
    I could imagine that these systems are affected in ME/CFS, but in one subtype caused by autoimmunity or at least responding to treatment of autoimmune disease. Another subtype maybe has some issues with viruses.

    Healthy people also have herpes viruses,.. but maybe in a ME/CFS subtype, dealing with these viruses and immune function burdens the metabolism too much? So giving antivirals might relieve the immune system of some burden and that can raise energy.
     
  18. ljimbo423

    ljimbo423 Senior Member

    Messages:
    1,020
    Likes:
    1,887
    United States, New Hampshire
    I believe the primary cause in most, is a leaky gut and most cases of leaky gut are caused by dysbiosis. Although there are many things that cause or contribute to a leaky gut.

    This is the basic path I believe CFS takes-

    • Dysbiosis=
    • leaky gut=
    • immune system up-regulation from lipopolysaccharides (LPS) entering the bloodstream, causing auto-immunity in some and significant oxidative stress=
    • Mitochondrial dysfunction (CDR) from up-regulated immunity and oxidative stress
    • Activated microglia, from LPS's effect on the brain, causing neuro-inflammation and flu-like symptoms in many
    How this unfolds on a biochemical level in each person with CFS is highly dependent on there genetics and epigeneics. That's why there are so many subgroups and why it's so difficult for researchers to find a consistent bio-marker.

    EDIT- Lipopolysaccharides (LPS) are toxins that make up some of the outer membrane of gram negative bacteria, many of which live in the gut. LPS cause a big immune response even at very low levels, once they enter the bloodstream.

    Jim
     
    Last edited: Dec 9, 2017
    rosie26, TJ_in_UT, merylg and 2 others like this.
  19. notmyself

    notmyself Senior Member

    Messages:
    364
    Likes:
    507
    sorry, can you tell me what LPS is?.. and can one be tested for leaky gut? there are any particular signs that should be present in someone with leaky gut?
     
    ljimbo423 likes this.
  20. Mary

    Mary Forum Support Assistant

    Messages:
    3,698
    Likes:
    8,244
    Southern California
    @ljimbo423 - what are LPS?

    In my case, I believe severe long-standing stress from childhood weakened my immune system, leaving it vulnerable to various viruses that healthy people generally have no trouble with. Healthy people have EBV and HHV-6 and coxsackie B, but they don't develop ME/CFS from it. So I theorize that the immune system endures some assault, whether environmental (toxins etc.) or emotional, leaving it vulnerable. My ME/CFS was very slow onset.

    Although so many people do become ill very rapidly after a generally very serious viral infection. I don't know if their immune systems were weakened before the viral infection.

    But definitely I think the immune system is involved, so CFS/ME may be a form of autoimmunity.
     

See more popular forum discussions.

Share This Page