1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Dr. Kerr, I presume?
Clark Ellis brings us a rare interview with British researcher Dr. Jonathan Kerr who is now living in Colombia.
Discuss the article on the Forums.

CFS is a metabolic condition!

Discussion in 'General ME/CFS Discussion' started by Dr.Patient, Jun 18, 2014.

  1. alex3619

    alex3619 Senior Member

    Messages:
    7,185
    Likes:
    11,254
    Logan, Queensland, Australia
    Playing Devil's Advocate for a bit, just to show how complicated this is we need to look at the opposite causation in a subset. Say something happens to damage the mitochondria. Then we have an infection that stresses it. The infection essentially reveals the defect by pushing it.

    Another hypothesis that I found was badly received way back when, but it sometimes discussed now, is the two hit hypothesis, though multiple hit hypothesis is more accurate. It might take multiple factors working together, either simultaneously or sequentially, to trigger the disorder. So for example this might be getting a herpes virus and an enterovirus. What we consider the trigger is the latest one, but what we don't consider is the synergy between the two.

    You can repeat the two hit hypothesis conjecture with any combination of two factors, or indeed any number of factors.

    Until the science is done we don't know enough to talk causes without speculating. We can however address results. We can measure abnormalities. Those are the data set that need to be explained.

    One of the factors I liked in some of Myhill's research was the indication that transfer of critical factors across the mitochondrial membrane was involved. Such transfer is rate limited. So there is NO cranking up the mitochondria. If further damage occurs then transfer can be further inhibited.

    Something I have always tried to consider is this: mitochondria are essentially not particularly robust bacteria. Antibiotics and other bacterial poisons can in theory hit them hard. So might bacterial phages. I tried to get KDM interested in the phage hypothesis some years ago, but he said they cannot see any mitochondrial infection on investigation.

    Yet another possibility is the pathogen is not a human pathogen, and does not infect humans. I have considered this from time to time over the years. What if the culprit is a gut bacteria pathogen such as a phage? The gut bacteria are infected, not us, but they will release toxins and other mediating factors, knocking out our immune system and disturbing gut function.

    I also do not think its a coincidence that nearly all the pathogens known to trigger ME are gut infections and can infect B cells.
  2. Hip

    Hip Senior Member

    Messages:
    2,962
    Likes:
    2,799
    That's not true. From what I have read, most viruses, once caught, are never eliminated from the body, and remain as a lifelong infection, albeit one that is mostly suppressed by the immune system.

    But even a suppressed infection is associated with damage and disease: for example, enteroviruses such as coxsackievirus B and echovirus remain in the body as chronic low level infections suppressed by the immune system, but nevertheless these viruses are linked to a number of diseases, including: amyotrophic lateral sclerosis, ADHD, autoimmune diseases, carcinoid tumors, chronic fatigue syndrome, Crohn's disease, diabetes mellitus type 1, diabetes mellitus type 2, dilated cardiomyopathy, Guillain–Barré syndrome, myocardial infarction, schizophrenia (ref: here).
  3. RYO

    RYO

    Messages:
    73
    Likes:
    74
    North Carolina
    I recently met with head of immunology at major tertiary center. Due to severity of my muscle symptoms, specialist is referring me to NIH for muscle and mitochondrial genetic testing. We discussed possibility that some of us have genetic predisposition and the viral hit leads to metabolic dysfunction.

    I suspect it may take a few months before I head to Bethesda but I will share results when available.
  4. Dr.Patient

    Dr.Patient There is no kinship like the one we share!

    Messages:
    241
    Likes:
    194
    USA
    Thank you for that info! Just wondering why that doesn't translate into standardized testing for all patients...
    merylg likes this.
  5. mellster

    mellster Marco

    Messages:
    799
    Likes:
    178
    San Francisco
    I'm certainly not an expert, but I'd wager that the vast majority of viruses caught are being expelled completely (e.g. rhino viruses, flu) while the group of herpes viruses and enteroviruses are different (but usually kept in check). While it is totally possible that they have a hand in it or even "work" in tandem with bacteria to do the damage, fact is that the vast majority of chronic infections are of bacterial nature - maybe not in CFS, but for all clinical conditions, and there is hardly any research for CFS on this. I agree though that coxsackie strains are good viral candidates. Of course then there is also the "easy" auto-immune way out for the Doctor's claiming it's viral DNA embedded in your DNA after infection which doesn't do any damage by itself, but the immune system keeps attacking it. I think that's the least likely option. Next problem is that most tests are antibody tests which cannot distinguish between immune response and reactivation. Finding tissue samples filled to the brink with pathogens would put the guessing game to an end.
    heapsreal likes this.
  6. mellster

    mellster Marco

    Messages:
    799
    Likes:
    178
    San Francisco
    Agreed. Also if your gut is in disorder/imbalance, you likely have a muted immune response and interest in and diagnosis of gut dysbiosis has been certainly rising fast.
  7. RYO

    RYO

    Messages:
    73
    Likes:
    74
    North Carolina
    What is difficult to explain is that other autoimmune disorders are not "silent" when they are active. There is usually some trail of damage that can be followed. If your immune system is activated against latent virus, there should be more than abnormal cytokines. Metabolic disorders on the other hand can sometimes be "cold"; little tissue damage but significant symptoms.

    The underlying problem may one day be explained under the framework of epigenetics.

    "Epigenetics is an emerging frontier of science that involves the study of changes in the regulation of gene activity and expression that are not dependent on gene sequence.

    Unlike simple genetics based on changes to the DNA sequence (thegenotype), the changes in gene expression or cellular phenotype of epigenetics have other causes, thus use of the term epi-(Greek: επί- over, outside of, around) -genetics.[1] In plainer language, epigenetics is the study of changes in the expression of genes caused by certain base pairs in DNA, or RNA, being "turned off" or "turned on" again, through chemical reactions.

    The term also refers to the changes themselves: functionally relevant changes to the genome that do not involve a change in the nucleotide sequence. Examples of mechanisms that produce such changes are DNA methylation and histone modification, each of which alters how genes are expressed without altering the underlying DNA sequence. Gene expression can be controlled through the action of repressor proteins that attach to silencer regions of the DNA. "
    Lillybelle and mellster like this.
  8. alex3619

    alex3619 Senior Member

    Messages:
    7,185
    Likes:
    11,254
    Logan, Queensland, Australia
    This finding is what led to my initial CFS diagnosis under Holmes. I had a very high Coxsackie B3 viral antibody level, in 1989.
  9. ukxmrv

    ukxmrv Senior Member

    Messages:
    3,445
    Likes:
    1,945
    London
    All ME and PVS and PVFS research ground to a halt in the UK as the psychiatric lobby gained influence. Researchers like Behan found that funding didn't come their way.

    In the late 80's ME patients in London had an Immunologist working at a major hospital with an interest in EV's. We were offered the VP1 test by the NHS at our GP's. Also access to Amantadine and what little they had to try and treat it.

    But after the ascendancy of the Psych lobby all of that was cut off from us and lost.
  10. MeSci

    MeSci ME/CFS since 1995; activity level 6

    Messages:
    3,518
    Likes:
    4,124
    Cornwall, UK
    If you're in the UK, that may be a question for NICE. Don't they provide the guidelines on what tests UK doctors should order? If not, who does? And who provides such guidelines in other countries?

    Oh - and there is the small point that ME is still treated by many doctors as a psychiatric illness, thanks to the psychoquack brigade who have been so influential that one of them has been given a knighthood!
    justy, merylg and heapsreal like this.
  11. Hip

    Hip Senior Member

    Messages:
    2,962
    Likes:
    2,799
    Well a while ago I was compiling a list of all the human viruses that have been newly discovered over the last 20 years or so. Around thirty human viruses have been discovered in this period, and my compiled list of these newly discovered viruses is here:
    Note that this is obviously not the sum total of all human viruses, just the recently discovered ones.

    What surprised me was that when I looked up the prevalence of these viruses, quite a few were highly prevalent in the human population. For example, Torque teno virus is ubiquitous: found in more than 90% of adults worldwide. And Saffold virus 3 is found in more than 90% of older children and adults. Human metapneumovirus is found in pretty much everyone: it has a 100% prevalence.

    I was left with the distinct impression that the human species harbors numerous viruses, and that these viruses live in our bodies on a long term basis. Now many of these new viruses will perhaps turn out to be relatively harmless; though at present, the pathophysiology and diseases associations of these newly discovered viruses is not yet known. The Saffold virus is interesting: this virus is from the Cardiovirus genus, and viruses from the Cardiovirus genus cause serious chronic diseases, mainly in rodents, including diabetes, myocarditis, encephalomyelitis, and multiple sclerosis-like disseminated encephalomyelitis.
    Last edited: Jun 24, 2014
  12. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,220
    Likes:
    4,524
    australia (brisbane)

    Im having a guess here, but the common finding amongst us is low nk cell function, its main job is to kill viral infected cells. I think this could be the reason why viral infections are chronic in many of us versus bacterial infections, in general??
  13. Hip

    Hip Senior Member

    Messages:
    2,962
    Likes:
    2,799
    That certainly may be one of the reasons why ME/CFS patients often have reactivated viral infections in their bodies (typically herpes family viral reactivations). However, even in healthy people, the body would appear to harbor numerous latent viruses, and conceivably these may be just as capable of precipitating or catalyzing chronic diseases as active infections.

    If you look at this list of virus–disease associations, it definitely suggests that some latent viruses in the body may precipitate a chronic disease. Remember that latent infections may not be creating many new viral particles, but latent viruses may still be operating in the body, doing things like synthesizing proteins.

    Dr Kazuhiro Kondo has hypothesized that there may be three degrees of latency in HHV-6 infections:

    Latency type I in healthy adults, where the virus is under control.
    Latency type II restricted reactivation (in astrocytes) is when the protein SITH-1 is made, and causes ME/CFS?
    Latency type III the normal virus reactivation.

    A similar theory of degrees of latency has also been proposed for Epstein-Barr virus.
    Last edited: Jun 24, 2014
    heapsreal, SOC and MeSci like this.
  14. MeSci

    MeSci ME/CFS since 1995; activity level 6

    Messages:
    3,518
    Likes:
    4,124
    Cornwall, UK
    or could it be reverse causation - that some infectious organism(s) reduce NK activity to protect themselves?
    heapsreal, SOC and Hip like this.
  15. alex3619

    alex3619 Senior Member

    Messages:
    7,185
    Likes:
    11,254
    Logan, Queensland, Australia
    I think this is more likely. Many pathogens try to suppress the immune system. But it could even be six of one, half a dozen of the other.
    SOC, MeSci and NK17 like this.
  16. place

    place Be Strong!

    Messages:
    284
    Likes:
    56
    US
    I have had this, what ever it is, since birth. There have been times of realitive functionality and times of sickness. As a child I was beyond hyper and was diagnosed with ADHD. I started to get chronic sinuitus when I was 21 and moved into a moldy apartment. When my body gets run down, here comes warts or shingles, or reactivation of god knows what else. Why can't my body deal with this. Other people my age (38) don't get shingles.

    At this point, the fact that I can't handle these normal invaders is something I was born with and that means genetics. I feel that either its ATP/Mito's in regard to energy to funtion and fight the bad guys and/or my bodies inablility to detox. When I address methyl and detoxing (avoidance and removal from the body), I feel my best.

    The other thing about ABX and anti virial is that, like me, you make progress while on them but as soon as you stop you begin to slide back. I took Doxy for 3 years, I loved it, it is also know for an anti inflammatory and anti viral. But within a month of stopping, I was back were I was before.
  17. SOC

    SOC Moderator and Senior Member

    Messages:
    5,293
    Likes:
    6,280
    USA
    IIRC, it's intracellular infections that our immune abnormalties give us trouble handling.
    http://en.wikipedia.org/wiki/Intracellular_parasite
    http://en.wikipedia.org/wiki/Natural_killer_cell
    So either T-cell deficiencies or NK cell deficiencies will cause problems handling viruses and other intracellular pathogens. We may have less difficulty with extracellular pathogens.

    Even Lyme disease
    http://en.wikipedia.org/wiki/Lyme_disease_microbiology

    Viruses are intracellular pathogens, but there are also some bacteria, protozoa, and fungi. Any of these sound familiar? ;)

    http://en.wikipedia.org/wiki/Intracellular_parasite
    MeSci, NK17 and Hip like this.
  18. Hip

    Hip Senior Member

    Messages:
    2,962
    Likes:
    2,799
    Returning to the subject of possible insufficient mitochondrial function in ME/CFS: did anyone read Cort's article on enhancing mitochondria in ME/CFS? What I found interesting was that methylphenidate (Ritalin) enhances mitochondrial function: this drug stimulates complexes II and IV of the mitochondrial respiratory chain.
  19. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,220
    Likes:
    4,524
    australia (brisbane)
    could be a vicious circle as ebv etc try to avoid the immune system by some how lowering our own interferon which is needed for good nk function, round and round it goes??
  20. Nielk

    Nielk

    Messages:
    5,243
    Likes:
    5,149
    Queens, NY
    Does low nk cell function manifest itself with autoimmune diseases?

See more popular forum discussions.

Share This Page