Secret Medical Files on ME/CFS = Aberrant prion diseases/ H2S

Discussion in 'Fibromyalgia Main Forum' started by karinaxx, May 31, 2009.

  1. karinaxx

    karinaxx New Member

    i never heard of this before and was fascinated by the explanation by CFSgeorge and John7heaven, in the thread of moreinfoplease.
    I realy would like some comments on this, so i paste some of the texts from moreinfopleas here, to shorten the reading up. I hope George and the others dont mind.


    Do you remember "Mad Cow disease?" by CFSGeorge

    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.

    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.

    interesting (by CFSGeorge)

    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."

    Sad but inevitable. (by john7heaven)
    I got the idea from the press release is he (Belgium Professor) is saying over time, the state of 'ME' can damage proteins, and thus cause prion changes. Which is unsurprising if your immune system is running full blast, with supression.

    We all know what that means, and it's fatal.

    It would explain why some people who are extremely ill with ME, die - and some people are misdiagnosed with ME, who then quickly go on to develop CJD.

    Terrible really.

    I always knew a disease that takes a fitness freak teenager and puts them in a Hospital/wheelchair for life, is hardly going to be something that is quickly 'fixed'.

    All we need to do now is spread the word, and remind the USA people here that ME is transmitable through body fluids.

    ME patients are banned from giving blood in the UK, by the national blood bank.

    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?

    They know it can be fatal, but covered it up - until science catches up.

    ME has been a neuro disease by the WHO (World Health Organisation) since around 1968, yet so far has had ZERO FUNDING by the British Government, despite costing BILLIONS per year to the country and tax payer.

    Very....strange, until it all folds out in front of you.

    Then it makes sense, and it makes sense why a military Psychiatrist (who denies Persian Gulf War Syndrome), just happens to have been put in charge of ME research in the UK = ME is 'unexplained medical symptoms' and conversion disorder, a form of psychosis.

    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.


    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." !!!!!!


    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!


    check out treatments for Prion D

    Does not sound good.


    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...


    i am speachless, look what i found !!

    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
    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

    5/31/09 9:16 AM it gets better, found exact detailed

    file info under

    cannot believe my eyes!!!!!!

    [This Message was Edited on 06/01/2009]
  2. pluis

    pluis New Member

    Really.. This is in fact dirty politics, and I will try to do more research on this as well next week. KDM always told me that it is dirty, and I would love to discuss this in further detail with him if I had my brain!

    In the 90s an ELAL airplane crashed on an apartment building in Amsterdam, Holland and that made a lot of people sick with the same symptoms as ME/CFS/GWI. I don't think information about the type of cargo and why people were sick, was never released.
  3. elliespad

    elliespad Member

  4. karinaxx

    karinaxx New Member

    myself, maybe somebody has some input on this.

    1. Could this information not bought before the human rights commision?
    Witholding such important information to millions of sick people is in my view a crime against humanity and this files have to be openend.
    2. If this files would confirm that this desease is caused it should by some military biological experiment, would that not be enoug to bring it up before the war crime tribunal?

    Just a thought????

  5. karinaxx

    karinaxx New Member

    i pasted some of the answer, which i thought were relevant to this topic, from a thread from moreinfoplease.
    It is all new to me too, that is why i asked others, who are informed about this topic for more
    This file is not hidden, but supposed to be closed until 2023.
    Dont know more than you.

  6. gapsych

    gapsych New Member

    I am having great difficulty following all this. I could not access the yahoo group but did read the PDF file which summarizes definitions, different researchers and what they have found.

    The only reference to anything close to a conspiracy is the theory that Lyme was being considered as a biological weapon. I have read a lot on this and find it is a long stretch to come to this conclusion.

    So where does this supposed file come in? If it is so secret why does everyone know about it?

    I am not one that buys into a lot of conspiracy without doing a lot of research, but if you could clarify this, time and energy allowing, I would appreciate it.



    ETA How does "Mad Cow Disease" come into the picture?[This Message was Edited on 06/01/2009]
  7. simpsons

    simpsons Member

    we have to stay on track and get the research centers and our brilliant scientists going before we can start on things like this. We run the risk of feeding into the we are just crazy or at least some of us are.

    I'm not dismissing malcolm hoopers aritcle and sure its good to read it but right now we have some great science and scientists with facts and thousands of research papers behind us this is just theory for now. just like wessley's theory that its all in our heads

    just my opinion but first we need to lobby the cdc and get behind the ME groups to get funding and strategic direction for research and proper care for adults and especially children.

    everyone needs to speak as one and together our voices will be heard.

    we need to continue with the direction that we are going in and not fragment. or the reeves of this world will say it is not all of us who agree that funding and research/treatment centers along with education of the general medical population and public that this is a real and devastatingly illness with hard fact science behind it.

    people like dr kerr with his gene research working with the whittlemore peterson institute and dr chia, prof k de m and all the brilliant scientists who spoke at the cfsac meeting need their points hammering home and our support

    i worry so about the children who are taken away from their families and left without treatment and those who cannot leave their beds in darkened rooms who have no voice.

    its a long hard battle to uncover what governments have sought to cover up as we have just found out in the uk our politicians have been claiming expenses on fraudulent basis some are now probably going to have to be taken to court for fraud. i think we are doing well in our current battle and should stay on track for the time being

    but thats just my opinion and i hope i don.t offend anyone in expressing this
  8. Rafiki

    Rafiki New Member

    You make me feel waaay better that I couldn't figure out what it was all about.

    Peace out,
  9. skeptik2

    skeptik2 Member

    You are absolutely right.

    Let's leave this for the scientists to figure out.

    Aha moment! didn't the NCF have an article in their "Forum" about prion disease in PWC/MEs?

    No difference...

    Simpsons' goals are the only ones I want to pursue right now...and I was in the Army! Biological weapons can backfire, maybe...

    Makes no difference...that's not our battle right now.

  10. karinaxx

    karinaxx New Member

    Thank you for the link to Tansi’s posts in 2007.
    Tansi’s post"s are always very enlighting.

    Hope she will turn up again and tell me what else she came up with.

  11. karinaxx

    karinaxx New Member

    Who is KDM?
    It would be great if you could spend some time on this.
    I dont have the energy and time in the moment.

  12. karinaxx

    karinaxx New Member

    I saw on your profiles that you are relatively short time members of this board and can understand you idealism and energy you bring here to advocate for all of us. I am less optimistic and I know there are members here who have been around for over twenty years; they have seen and heard it all before, repeated over and over again. They have fought endless battles for many years and most of them would agree with me, that nothing has changed !

    I have been a political activist in the eighties and have learned from experience that good intentions alone are often not enough. We are not living in a lala world and more often than not, it is the ones with power, backed by money and selfish interests, which win the battle.
    And I also learned that these individuals, groups, organizations will not cave unless they are confronted head on and are under enormous pressure.

    Should there really be files which have been kept under lock by the Medical Research Council under the Official Secrets Act , than it is high time to bring this to the attention of the public. And the only way this will be taken seriously, is by bringing this to the attention of independent higher authorities.

    But it might as well be, that there is nothing to it. But it also might be that there is and it has not been taken seriously because it sounds to fantastic.
    Imagen if this is the case?
    Anyhow, i like to know if this has been ever followed up by somebody and what happend.

    [This Message was Edited on 06/02/2009]
  13. gapsych

    gapsych New Member

    Thanks for putting things in perspective.

  14. Rafiki

    Rafiki New Member

    I may be a relatively new member here but I am not new to ME. I got ill before you became a political activist - 1979 when I was 27.

    We share political activism, Karinaxx. I have been a political activist since my mid teens in the 1960s. I continue to be politically active via the internet in a number of causes and, whenever possible, I still take my folding stool out into the streets and add my body to a good cause. My work, while I still could, involved working with NGOs, NFPs and Grass Roots organizations working globally for peace and social justice. Activism is in my very marrow. I've been around the block more than a few times.

    Good intentions are never enough, I agree. Intelligent choices must be made as to cause and action. Perhaps you will do some digging and find out what's what here. I'm a huge believer in rousing the rabble. First one needs to know just what one is rousing for. I wish you all the best in your efforts, and those with you, in sussing out the truth.

    Peace out,

    ETA Hey, you live in India! I've worked with SEWA - Self Employed Women's Association - a fantastic Gandhi inspired "Trade Union" for women in traditional areas of self employment. I don't know what part of the country you are in but I worked in Gujarat. These women took their struggle for justice all the way to the Indian Supreme court where they won! Amazing women, you should check them out.
    [This Message was Edited on 06/02/2009]
  15. karinaxx

    karinaxx New Member

    thanks for your reply.
    Yes we have some tough lady's here in India!

    to everyone else,
    I hope i get some more info here.
    Hey girls and guys, there must be people out there which know more ....!
  16. Bluebottle

    Bluebottle New Member

    When the 'request a review' button is clicked a form comes up asking for details and asking 'what is your question'.

    I don't know what question to ask, or even what 'request a review' means. Does anyone here, please?

    I can't travel there as I am housebound.
  17. simpsons

    simpsons Member

    good luck to anyone who has the energy to follow this. i just don.t have the energy right now. exhausted already with current goals

    i think that the European group would be a great group to start this up.

    luminescent feeling thanks for getting to the bottom of how this can be actioned and providing the links