RE: Dr. De Meirleir news: aberrant prion disease???

Discussion in 'Fibromyalgia Main Forum' started by moreinfoplease, May 29, 2009.

  1. moreinfoplease

    moreinfoplease New Member

    I don't know enough or understand enough to figure out what the part about aberrant prions means.

    Even if I am not in the category of the 20% most severely ill right now, should I be concerned that I could be a carrier and therefore could transmit this illness to others? That's what I am concluding, but maybe I am misunderstanding.

    I don't need any extra reasons to be anxious--already have plenty--so any feedback or insight is appreciated.


    *********************************************************************
    From: "Research on Extremely Disabled M.E. Patients Reveals the True Nature of the Disorder" at prohealth

    "Finally in 20% of the ME patients (in the severely ill) we found, using a special luminescence technique, aberrant prions which also interfere with the energy metabolism.

    These patients have gone on to develop A.P.D. (aberrant prion disease – patent pending). These aberrant prions give rise to a transmissible disorder. 10% of the A.P.D. patients have very high prion counts in their saliva and can directly transmit it to others.

    APD patients can transmit these proteins via blood and likely also through sexual contact which then can give rise to slowly developing aberrant prion disease.

    In a separate experiment 40 healthy blood donors were screened for A.P.D. One individual tested very positive, indicating that apparently healthy individuals can already be carriers and that blood transfusion carries the risk of transmitting A.P.D."
    *********************************************************************
    [This Message was Edited on 05/29/2009]
  2. cfsgeorge

    cfsgeorge New Member


    That was probably the most famous example of an infectious and fatal aberrant prion disease. Actually, all aberrant prion diseases are fatal to date. There was a whole show i think on National Geographic. Basically, prions are proteins found on our plasma membrane with the highest concentrations in the CNS-spinal cord and brain. An aberrant prion means a mutated prion. The don't know the exact pathophysiology of a mutated prion, but prions hangs out in your brain and spinal cord in large numbers. They don't know what prions do maybe as a messenger somehow.

    On the Nat Geo, they showed how sheeps had it first and then the cows in the UK ate feed with infected slaughter sheep. The mutated prions was passed to the cow in the feed and made it's way into the CNS where it basically drilled holes in the brain. All the infected cows died a cruel death. That was Mad Cow Disease. Then, somehow some of the infected cow meat made it to the dinner tables. Same thing happened as the mutated prions in beef was ingested by humans and made its way to the CNS and eventually drilled holes in their brains. It was a slow and horrible death taking about 9months.

    The show also showed how sometime in the past, cannibals who ate the dead in their traditional funeral ceremonies was also infected with the deadly disease. Whole tribes were infected and dying until they put a stop to that tradition or cannibalizing the dead.

    Now, what does this have to do with CFS? i don't really know. We'll have to wait for Dr De Meilier to tell us. He does say it's spread by blood and saliva. Maybe this is the infectious agent that the veterans with GWS have spread to their families. The rate of transmission among the GWS families was reported to be 70%. However, Dr Nicholson believes the transmitted pathogen is mycoplasma. He uncovered the pathogen when his own daughter who has GWS passed it to him and his wife. I don't know if he checked for prions or any other pathogens.
  3. simpsons

    simpsons Member

    Thank you for posting this. i also am concerned about this. if you look at pat fero her son also had cfs.

    i had just been starting to look for info on prions as i had a bovine bone graph and titanium metal work placed in my body and have been unwell in varying degrees since and then when had travel vaccinations dropped to another level of this illness.

    no one wants to answer my concerns with this bone graph so i will have to struggle to research this now. then i can go armed with evidence.

    i hope we don.t have to wait too long for this paper to be published so that we can understand.

    peace love and soft hugs
    [This Message was Edited on 05/30/2009]
  4. winsomme

    winsomme New Member

    i just went and read the full article:

    http://www.prohealth.com/library/showarticle.cfm?libid=14579

    and it's pretty confusing. The end seems to indicate that these aberrant prions develop as a result of the disease and are not the cause of the disease - meaning the prions only appear when you are the most ill.

    But the report also says that they found the prions in a healthy control.

    It seems like a pretty big coincidence that people would be suffering from a disease caused by toxic levels of hydrogen sulfide (produced possibly by bacteria in the gut) and then would also somehow acquire a prion disease.

    I'm not sure if this is exactly what they are suggesting, but it at least seems that way to me...

    I would love to get others takes on the full text. I'm going to post it in a separate post.
  5. znewby

    znewby Member

    Chronic Fatigue Syndrome Breakthrough: What is Hydrogen Sulfide?
    Saturday May 30, 2009
    Recent major scientific breakthroughs in chronic fatigue syndrome (CFS or ME/CFS) blame the disease on a chemical called hydrogen sulfide.

    Belgian researcher Dr. Kenny de Meirleir and his team say high levels of hydrogen sulfide are a major cause of ME/CFS and lead to a series of reactions in your body that leave cells devoid of oxygen and energy. (Read more about these discoveries.) But what is hydrogen sulfide?

    Hydrogen Sulfide

    Abbreviated as H2S, hydrogen sulfide is a naturally occurring toxic gas. You know that rotten egg smell associated with sulfur? That's hydrogen sulfide. It's released by decaying substances and as a result of certain industrial processes.

    In your body, high H2S can damage multiple systems, including the central nervous system, the heart, and the liver. Much of the available information on H2S poisoning relates to inhalation in industrial settings, which can also damage the lungs.

    According to the U.S. government's Agency for Toxic Substances and Disease Registry, chronic exposure can cause:

    Low blood pressure
    Headache
    Nausea
    Loss of appetite
    Weight loss
    Ataxia (poor coordination, staggering gait)
    Eye-membrane inflammation
    Chronic cough
    Neurological symptoms
    Psychological disorders
    Nearly all of those symptoms are associated with ME/CFS.

    Treating Hydrogen Sulfide Poisoning

    Studies have shown that nitrite therapy, which is also a treatment for cyanide poisoning, can aid recovery from H2S poisoning due to inhalation. There's anecdotal evidence that hyperbaric oxygen therapy can help in more severe cases. However, it's not clear whether those are safe and effective treatments for ME/CFS.

    Interesting Facts About Hydrogen Sulfide

    In mice, H2S can induce hibernation.
    H2S is partially responsible for the stench of rotten eggs, flatulence and sewage.
    In the brain, at normal levels, H2S increases the response of NMDA receptors, which deal with glutamate.
    H2S effects are similar to those of nitric oxide, which other researchers have linked to ME/CFS, fibromyalgia and Gulf War syndrome.
    Suggested Reading:

    Cause, Mechanism & Diagnostic Test for ME/CFS Discovered
    What Major ME/CFS Breakthroughs Mean to You
    Chronic Fatigue Syndrome Symptoms Checklist
  6. winsomme

    winsomme New Member

    Research on Extremely Disabled M.E. Patients Reveals the True Nature of the Disorder
    By Kenny De Meirleir(1), Chris Roelant(2), Marc Fremont(2), Kristin Metzger(2), Henry Butt(3)

    (1) Vrije Universiteit Brussel & HIMMUNITAS foundation, Brussels, Belgium
    (2) Protea Biopharma, Brussels, Belgium
    (3) Bioscreen & Bio 21, University of Melbourne, Melbourne, Australia

    In this study we compared totally bedridden patients (Karnofski score 20-30) with less ill ME patients (Karnofski score 60-70), family controls, contact controls and non-contact controls.

    EBV, HHV6 and Borna virus titers were not different in the three groups. Plasma LPS distinguished the groups, with the highest values in the bedridden patients.

    LPS [lipopolysaccharide] is a strong activator of the immune system, and high plasma concentrations suggest a hyperpermeable gut. There are many possible causes for this, but a lack of 'local' energy production is one of them.

    In a separate study (In Vivo, in press) we observed intestinal overgrowth of Gram positive D/L lactate-producing bacteria which are also known to produce H2S [hydrogen sulfide] in presence of certain heavy metals as a survival defense mechanism.

    We therefore hypothesized that the urine of the bedridden ME patients would contain more H2S derived metabolites than the less ill and the controls. Using a proprietary simple color change urine test this hypothesis was confirmed.

    In the extremely ill, urine added to the yellow color reagent immediately turns dark blue, whereas in the less ill the reaction is slower and in the controls no reaction occurs.

    Being a potent neurotoxin, H2S induces photophobia, intolerance to noise,
    mitochondrial dysfunction by inhibition of cytochrome oxidase, and depresses the cellular immune system and induces neutropenia and low numbers of CD8+ lymphocytes.

    Its effects, at least in part explain the clinical condition of the severely disabled ME patients.

    Furthermore the effects of the bacterial H2S induces increased ROS production by the liver and retaining of heavy metals particularly mercury in the body.

    The latter is also neurotoxic, induces apoptosis, and interferes with the aerobic metabolism. Chronic increased production of H2S by intestinal bacteria leads to build-up of mercury in the body as proven by a Zn DTPA/DMPS challenge test.

    Finally in 20% of the ME patients (in the severely ill) we found, using a special luminescence technique, aberrant prions which also interfere with the energy metabolism.

    These patients have gone on to develop A.P.D. (aberrant prion disease – patent pending). These aberrant prions give rise to a transmissible disorder. 10% of the A.P.D. patients have very high prion counts in their saliva and can directly transmit it to others.

    APD patients can transmit these proteins via blood and likely also through sexual contact which then can give rise to slowly developing aberrant prion disease.

    In a separate experiment 40 healthy blood donors were screened for A.P.D. One individual tested very positive, indicating that apparently healthy individuals can already be carriers and that blood transfusion carries the risk of transmitting A.P.D.

    In conclusion, ME is a disorder which is caused by increased endogenous H2S production. For the latter many factors can be present.

    Because of the effects of H2S in the body a chain of events will develop which have more and more negative effects on the aerobic metabolism and depression of the immune system leading to more and more infections and reactivation of endogenous viruses.

    In its final stage aberrant transmissible prions develop which put the patients in a total energy depleted state.

  7. cfsgeorge

    cfsgeorge New Member


    What is so interesting about prions is that it is just a protein. It is not a virus, bacterium, spore, or any type of microorganism responsible for infectious diseases. It's simply an innate protein. An aberrant(mutated) prion, is just a "mutated" prion or protein. A mutated protein's secondary structure is altered giving rise to an altered tertiary structure(final structure).

    What does this mean? It just means the protein has been structurally altered so that it cannot function in the way it normally does. Unfortunately, we do not know what a normal prion's function is in it's tertiary structure. More interestingly, how does a protein like an aberrant prion become a deadly infectious disease? It's just an altered protein. You can do that by cooking or microwaving meat. so what? The only thing i can compare A.P.D. with is cancer, but cancer is not a transmittable or infectious disease. This is so puzzling.

    But all this just reminds me of how primitive our understanding of the human body and medicine is today. In 100 years, everything we know or don't know now will all just be simple pre-school "stuff."
  8. outofstep

    outofstep Member

    You can't give blood in the UK if you have ME but it's "cured" via CBT & GET.

  9. cfsgeorge

    cfsgeorge New Member


    CJD is an inherited aberrant prion disease. I'm not sure if there is a direct connection to ME/CFS.

    I was a health and gym freak at the peak of great health when i was disabled by ME/CFS at 37. It just doesn't make sense that healthy active adults seem to get this DD.

    The UK says ME is all psychiatric, yet bans ME patients from giving blood? Does that make any sense?

    If it's purely a monetary issue for the UK, it'll probably cost billions more than billions saved when it comes to treating ME. I am just glad i'm not living in the UK with this horrible disease.
  10. outofstep

    outofstep Member

    CJD can be acquired. John are you saying that this has something to do w/ mad cow in the UK?
  11. skeptik2

    skeptik2 Member

    This is very interesting.

    If CJD/mad cow can be acquired, transmissable by salivia and sexual contact, no wonder the gov'ts of the world are covering it up.

    They can't silence all the science going on right now, though; so even though this may be frightening, if true, I think we are going to have answers real soon.

    I found it interesting that one of the controls showed such very high prions...without symptoms.
    I wonder why that control was not very sick. Maybe if they study his/her genetics with Kerr's results, they may find something that can help with ME patients.

    BTW, John, I don't recall seeing you around here; are you a lurker, come on only occasionally, or what? Do keep on keeping us informed, I appreciate it.

    skeptik2
  12. karinaxx

    karinaxx New Member

    I and my son have been diagnosed by Dr.Meirleir and i regard him as most interesting Docs i have ever met.

    You seem to have a good medical knowledge. Are you in the the medical field...?
    You explained the Prion stuff so well, thanks. It is really interesting.

    One interesting fact which caught my eye is the fact that ABX seem to cause an increase in hydrogen sulfide levels.
    I have written on this board about ABX treatments and seemingly adverse effects (worsening effect) in ME/CFS, MS and other autoimmune D.
    To me it all makes very good sense. But what i dont get is how does this process all starts?
    "In a separate study (In Vivo, in press) we observed intestinal overgrowth of Gram positive D/L lactate-producing bacteria which are also known to produce H2S [hydrogen sulfide] in presence of certain heavy metals as a survival defense mechanism."
    Enterobacteria can cause such high levels of H2S and start such process? Or again, what is the egg and what the hen?

    I guess we really have to wait for more enlightment from the master himself and i hope this is not just another part of this hellish DD.

    Indeed "But all this just reminds me of how primitive our understanding of the human body and medicine is today. In 100 years, everything we know or don't know now will all just be simple pre-school "stuff." !!!!!!

    Karinaxx







  13. outofstep

    outofstep Member

    check out "mad cow disease" on wikipedia (I hate them but this is a good overview-if it's accurate)-the timelines match up. Very interesting.
  14. karinaxx

    karinaxx New Member

    This has caught my eye too " The British Government always knew the cause. How could they have known 30 years in advance, and why is there a secret file on ME (Myalgic Encephalomyelitis), held at the public records office by the MRC (Medical Research Council), that is classifed until 2027?"

    Where on earth did you pick up this information?

    I must say, i am not a friend of this speculative war connection theory here, since it puts us at even greater risk looking like some loonies ......
    But secretly i have often wondered why there seems to be such a persistent force to hide, discredit, misinform, deny real research into this illness?

    I have to submit this adds indeed another twist to the whole issue and right out of the Science Fiction Genre!

    Karinaxx
  15. karinaxx

    karinaxx New Member

    http://www.cjd.ed.ac.uk/TREAT.htm

    Does not sound good.

    Karinaxx
  16. outofstep

    outofstep Member

    I'm not a big conspiracy theory person either but there may be something to this. Interesting that one of the recommended treatments is an antimalarial-antimalarials including b12 are used in CFS treatment. makes you wonder, anyway...
  17. karinaxx

    karinaxx New Member

    here is an exerpt of a interview with the Shefield ME Group and expl. by Dr.Malcolm Hooper, one of the few Experts in Europe
    "Can you say something about the work of Martin Pall?
    Prof. Martin Pall looked at these immune inflammatory pathways and identified nitric oxide
    which is a major mediator in these pathways and which figures in all the work that has been
    done, such as Vance Spence’s work. Pall sees this as a linking factor. And in the Kenny De
    Meirleir work, nitric oxide is a major player in one part of his pathways. He is saying that
    Martin Pall is right about one little bit, and he is trying to find a much bigger picture. So that’s
    the link with nitric oxide.
    Can you say something about the recent publication Corporate Collusion and the fact
    that the Medical Research Council is said to keep a secret file on M.E? (this document is
    available in our library and from http://www.meactionuk.org.uk/Corporate_Collusion_2.htm)
    Professor Hooper said that indeed the MRC has a secret file on M.E, there is no doubt about
    that. It is being prescribed and restricted for 30 years. It is a file on the proceedings of the
    Chief Medical Officer’s Report that was meant to be the basis of the move towards something
    more effective for M.E. The people who were part of the CMO’s working group had to sign
    the Official Secrets Act. (“What on earth is going on in the world of M.E. that is going to
    breach the Official Secrets Act!”)
    Professor Hooper told us that he had thought about this for some time and this is his take on
    it. One of the things that has begun to loom large in the world of M.E. is Lyme Disease and
    Borrelia infection. Borrelia is not common in the UK. It is normally associated with deer ticks.
    You can get it from other animal ticks and you can get other strains of the organism from
    mosquitos, it is not restricted to ticks. “Lyme disease is one strain of Borrelia. That was
    investigated in the United States as a biological weapon. If you can lay out a whole
    population with something that reduces their energy and lays them out flat, then you can
    control them. That is my take on it. I think that it could easily be related to something to do
    with biological weapon development, because I believe some of this was released in the
    States. If all that came out it would be awful. I know that this is a ‘conspiracy theory’. But "

    The whole pdf file http://www.sheffieldmegroup.co.uk/reports/conf2007.pdf

  18. karinaxx

    karinaxx New Member

    file info under http://groups.google.com.bn/group/alt.med.cfs/msg/02bb619d3ce27889

    cannot believe my eyes!!!!!!