NCF says CAUSE of CFS is FOUND

Discussion in 'Fibromyalgia Main Forum' started by findmind, Jun 2, 2006.

  1. findmind

    findmind New Member

    I got a letter today from NCF, with copy of Press Release about a new virus being found.

    The letter says the probable cause of cfs has now been found, and actually was known but not published so someone could apply to FDA for test to find cause of MS and a type of epilepsy.

    It implied that CFS was not mentioned in application to FDA so as to get around political issues with CFS.

    Did anyone else get this letter? Do you know how to copy it into your computer and post it here?

    Can this be true? Or is it just another virus someone like the FFC clinics can find in our blood if they look?

    Great news if I understand it right...

    findmind


  2. lenasvn

    lenasvn New Member

    Is the letter in postal mail form?
  3. findmind

    findmind New Member

    June, 2006
    Dear NCF member,

    We're writing to let you know, since our members ARE the National CFIDS Foundation, that the cause of CFIDS/ME, known as hronic fatigue syndrome, appears to have been found! It's a virus and a serious one, at that, but exposing the cause if the only path that will lead us to a real treatment for this disease. And, inded, you do not suffer from a "syndrome" but a disease!

    The press release explains that the virus was first found in swine but has jumped from pigs to many other animals and to humans. a researcher discovered this in the mid-90s, according to patents around the world, but he identified the virus, not the disease with which it was associated. Another researcher found it in the blood of people with multiple sclerosis (MS) and epililepsy. He did not publish this in a medical journal. He is planning on applying for an FDA approved test for MS and for the type of epilepsy. Why doesn't he intend to apply for CFS as well? We don't know. Perhaps he has found out how CFS is treated politically, but we haven't asked. However, should he and his company eventually be approved for the test, you will be found positive.

    The press release is intended to get to various medical/health groups so it will, finally create more interest in this disease and identify some researchers capable of working with this virus to develop a viable treatment. We will be waiting for them to contact us should they need funding no matter what country they are based in. For that reason, we put up all the information to confirm everything stated the in press release on our website. (ncf-net.org) The full multi-page patents will appear along with work our own foundation has funded including one study that actually was able to isolate this particular virus in one patient with CFIDS/ME.

    (my paragraphing:...con't "Much of it is very technical but yur summer newsletter will arrive by late July and will have more information to explain, in easier terms, what this press release means to patients and how it was discovered. Before the formatting and printing of the newsletter as well as the labeling and mailing takes place, we felt our members deserved to know quickly exactly what the Foundation was doing and what had been discovered.

    We owe no small amount of thanks to our medical director and our entire medical committee as well as to every member who donated to our research and for those who supported us in so many different ways. We're making huge progress and we thank you for making it possible.

    For better health...soon!
    (Signed, Gail Kansky, Pres, National CFIDS Foundation, Inc.)

    OK, I typed this verbatim...now maybe we can decipher what it means???

    findmind
  4. mariee

    mariee Member

    Potential Animal (Zoonotic) Virus Identified in Patients with Chronic Fatigue Syndrome, Multiple Sclerosis and Epilepsy

    Needham, MA May 31, 2006 -- Recent independent scientific research funded by the National CFIDS Foundation, Inc. (NCF) of Needham, MA provided preliminary confirmation of a new virus identified in patients with Chronic Fatigue Syndrome. The Foundation's medical research dovetails with that completed to date by Cryptic Afflictions, LLC *, a private company.

    Dr. Steven J. Robbins, virologist and Chief Executive Officer of Cryptic Afflictions, LLC has discovered a major neuropathogen identified as an RNA virus designated as Cryptovirus. Substantial clinical and molecular evidence indicates that this virus is involved in the development of neurological disorders that include Chronic Fatigue Syndrome (CFS), also known as Myalgic Encephalomyelitis (M.E.) by the World Health Organization, Multiple Sclerosis (M.S.) and Idiopathic Epilepsy of unknown cause.

    According to the company, "This previously undetected virus appears to be of significant importance to researchers looking for a cure to Multiple Sclerosis and many other neurological illnesses. Antibodies to the newly discovered virus were found in the cerebrospinal fluid and blood of over 90% of the patients tested with Multiple Sclerosis. It is believed that this newly discovered virus may prove to be responsible for a host of neurological disorders. Tests are currently being prepared for tissue samples of lesions within the brains of patients with Multiple Sclerosis. This will be the final round of tests before approaching the FDA for approval of the diagnostic tests."

    Dr. Robbins' evidence includes the presence of virus-specific antibodies in the serum and cerebrospinal fluid of patients suffering from these disorders, the ability of the virus to cause virtually identical disease in experimentally-infected animals, and nucleotide sequence data that indicates that the virus is pandemic and represents a single virus species much like measles.

    A recently published medical journal article suggests that Cryptovirus is most similiar to Parainfluenza Virus-5, a rubulavirus in the paramyxovirus family. Another rubulavirus related to Cryptovirus and Parainfluenza Virus-5, that has gained national attention for its large outbreak, is the mumps virus. Rubulavirus infections have been associated with encephalitis, meningitis, orchitis, inflammation of the testicles or ovaries, spontaneous abortion, and deafness.

    The NCF has conducted its own preliminary research into the potential role of Cryptovirus and Parainfluenza Virus-5 in Chronic Fatigue Syndrome. Professor Alan Cocchetto, Medical Director for the Foundation stated, "Our own funded research first confirmed the lack of a vital protein, known as Stat-1, in the blood of patients with Chronic Fatigue Syndrome. Stat-1 plays an indispensable role in immunity.

    Without this protein, patients are unable to effectively fight viral and bacterial infections. Thus, the next logical question to be answered was 'Could a virus be causing this Stat-1 depletion?' " Cocchetto continued, "Parainfluenza Virus-5 is a virus that had to be seriously considered as a possible piece of this medical puzzle because it directly targets and destroys the Stat-1 protein." Gail Kansky, President of the NCF stated, "Once we determined the status of Stat-1 in patient blood samples, we knew that we had to look for possible evidence of Parainfluenza Virus-5 infection. It was during this phase of our own research that we actually learned of Dr. Steven Robbins' discovery of Cryptovirus specific antibody reactivity in patients with CFS." Dr. Robbins had tested fifty-six serum specimens from patients who had been diagnosed with CFS along with eleven matching cerebrospinal fluid samples obtained from physicians in Brisbane and Southeast Queensland.

    Dr. Robbins had determined that 96% of the blood samples and 91% of the spinal fluid samples tested positively for Cryptovirus specific antibodies in these CFS patients.

    The National CFIDS Foundation's own research began to dovetail with that of Dr. Robbins. Scientists funded by the Foundation performed numerous tests for Parainfluenza Virus-5 that included antibody as well as PCR specific probes. Antibody testing provided some initial hints, however a PCR specific probe picked up the infection in a former patient
    of David S. Bell, M.D. and Paul R. Cheney, Ph.D., M.D., both considered well known specialists in the field of Chronic Fatigue Syndrome. Kansky commented, "Though our funded research continues in diagnostic testing, our findings have served to highlight the important work of Dr. Robbins and the role of Cryptovirus and Parainfluenza Virus-5 infection in CFS."

    NCF scientists utilized the NIH Genbank database to find the nucleotide sequence for a specific viral protein of Cryptovirus that matched 100% to the porcine (swine) strain of Parainfluenza Virus-5 known as the SER strain. In 1994, scientists at Bayer AG in Germany first isolated the SER strain from swine with Porcine Reproductive and Respiratory Syndrome.
    "This may represent a zoonotic process since zoonotic viruses are those that can be transmitted between animals and people" stated Cocchetto. Kansky commented, "Here we have what appears to be the same viral strain of Parainfluenza Virus-5 on two continents and in two different populations, swine and humans. Given that the NCF found Parainfluenza Virus-5 in one CFS patient in the United States certainly raises the bar." The Foundation is currently funding further research.

    The National Institutes of Health (NIH) has several ongoing grants in the Parainfluenza Virus-5 field. Currently, however, there is only one U.S. scientist specifically funded for research on the SER strain of Parainfluenza Virus-5 by the NIH.

    Founded in 1997, the National CFIDS Foundation has grown to become the largest, all-volunteer patient organization of its type in the United States. The Foundation has no paid employees and is funded solely by individual donations for the primary purpose to fund medical research into the cause and treatment and/or cure of Chronic Fatigue Immune Dysfunction Syndrome (CFIDS/CFS).

    * "Limina Biotechnologies, Inc. is a recently formed subsidiary of Global Medical Technologies, Inc. that was established for the purpose of merging Cryptic Afflictions LLC and Global Medical Technologies, Inc. It is the intent of management to spin off this newly formed corporation once the merger is completed so Limina can raise capital through its own IPO," according to the company's website
  5. findmind

    findmind New Member

    We have this press release on another posting here, but maybe it will help that it is together here with the NCF letter I received today, so THANKS!

    findmind
  6. findmind

    findmind New Member

    Also see ulalee's post below: re: research in 2002.

    findmind
  7. LittleBluestem

    LittleBluestem New Member

    “one study that actually was able to isolate this particular virus in one patient with CFIDS/ME”
    “Potential Animal (Zoonotic) Virus Identified in Patients with Chronic Fatigue Syndrome”
    “preliminary confirmation of a new virus identified in patients with Chronic Fatigue Syndrome”

    Interesting lead; but, at most, I would say they may have found A cause of CFS, not THE cause of CFS. It's good to hear of any research on the subject.
  8. Shannonsparkles

    Shannonsparkles New Member

    Thank you for posting. I liked especially the part of the article that said, "This is not a syndrome, this is a disease." Makes sense to me. Why else would you get a set of the exact same symptoms cropping up all over the world in people who don't know eachother if it isn't a disease? This certainly puts another piece in the puzzle.

    My question is, what does this research mean in practical terms for us as patients?

    Does it mean that now that they have "discovered" this virus, they can start developing a vaccine? Does this bring us closer to a cure? Is there any way that we can use the new information personally, in the meantime?

    Another question that comes to mind is, is the damage the virus causes permanant? The article mentioned immune abnormalitites, and we know that in the cases of MS and epilepsy patients that there is physical damage done to neurological structures. If the virus were killed, would the physical damage heal? Or would a vaccine be more useful for people in the early stages of infection, before physical damaged had progressed far?

    Thank you for the excellent articles!
    (( )) Shannon
  9. butterfly8

    butterfly8 New Member

    So far this year I have read about at least four places/research institutes/companies/universities that have "probably" discovered the cause of cfs.

  10. mariee

    mariee Member

    I get discouraged when I read these kinds of articles because I am looking for a solution....there wasn't one here...just a "possibility of a cause"
    I guess in the science world...it is great?
    Doesn't help much with my immediate pain.
    I will jump up and down (sort of) when a reliable source says "cure"
    Marie

    PS. To the person asking about a cure and recovery from a disease like MS, many of my MS lesions have resolved or healed over...so I am sure that a virus hit my system...I was sick like w. the flu in the beginning of my illness.
    I was initially dd w. Encephalomyelitis, which is why this article caught my eye...I am emailing it to my neuro...

    I think our bodies can recover from most anything...if a cure is found...[This Message was Edited on 06/02/2006]
  11. Tantallon

    Tantallon New Member

    then there is the genetic findings and HHV-6 virus, so hopefully they are getting somewhere near to a definate cause and treatment.

    Thanks for posting this info
  12. woofmom

    woofmom New Member

    You'll have to forgive me if I'm wrong. But I can't help it if I don't trust any of the research and studies. I'm constantly reading and studying about the manufacturers who make many of the things that are poisoning and killing people. They'll do ANYTHING to cover up the harm they have caused.
  13. morningsonshine

    morningsonshine New Member

    I don't want a vaccine, Most of us are probably beyond that stage anyways. How do we not know that previous vaccines isn't were the original virus got introduced to our systems anyways, or weakedned us.

    We need a comprehensive treatment plan that works!! Because they are targeting the right issues in each of us.
  14. mme_curie68

    mme_curie68 New Member

    I am skeptical of this research as well.

    The reason being that if results were being deliberately delayed - then the research is not in the public interest for patients that suffer, it is for the very NON-PUBLIC interest of an LLC - to make money!!! The first way to make BIG BUCKS is to find a possible causitive agent and develop a laboratory test to detect it. The company that makes and sells the test kits (hmmmm, which one will that be...) will make huge money at sick people's expenses.

    So far, lets see, we have epilepsy patients who will want the test, MS patients, CFS patients...what will this test tell us other than who has been exposed and who hasn't???

    Nothing. How much money will it make "Lumina Technologies" - tons.

    The other thing that really, really bothers me is that this "press release" went to NONE of the major newswires - just a couple of independents and CFIDS websites, About.com.

    Here's another article from BioSpace.com: PAY SPECIAL ATTENTION TO THE SAFE HARBOR statement...

    "Century Pacific Financial Corp. Announces Position On Medical Breakthrough

    TEMPE, Ariz., Sept. 22 /PRNewswire-FirstCall/ -- Century Pacific Financial Corp. (BULLETIN BOARD: CYPC) announced today that the company's wholly owned subsidiary, Global Medical Technologies, Inc., and Cryptic Afflictions, LLC, have formed Limina Biotechnologies, Inc. in the State of Nevada.

    Under terms of the agreement, Dr. Steven J. Robbins, Acting Chief Executive Officer of Cryptic Afflictions, LLC, and David Hadley, President of Century Pacific Financial Corp., anticipate merging both companies, Cryptic Afflictions, LLC, and Global Medical Technologies, Inc. into Limina Biotechnologies, Inc.

    "We expect the shareholders of Century Pacific to significantly benefit from our ownership interest in Limina Biotechnologies, Inc.," commented David Hadley.

    Cryptic Afflictions, LLC has extensive U.S. and international patents pending and owns the intellectual property rights to a major and, heretofore, unrecognized human neuropathogen, an RNA virus designated-Cryptovirus. Substantial clinical and molecular evidence indicates that this virus is involved in the development of major neurological disorders including Multiple Sclerosis (MS) and Idiopathic Epilepsy (IE); epilepsy of unknown cause.

    This evidence includes (1) the presence of Cryptovirus-specific antibodies in the serum and cerebrospinal fluid of patients suffering from these disorders, (2) the ability of the virus to cause virtually identical disease in experimentally-infected animals, and (3) nucleotide sequence data that indicates that the virus is pandemic and represents a single virus "species"-more akin to measles virus than hypervariable viruses like HIV.

    "Further clinical validation studies using Cryptovirus-specific RT-PCR assays have been initiated to confirm the presence of the virus within central nervous system lesions of patients diagnosed with such disorders," stated Dr. Robbins.

    Safe Harbor Forward-Looking Statements

    Except for historical information contained herein, the statements in this release are forward-looking statements that are made pursuant to the safe harbor provision of the Private Securities Litigation Reform Act of 1995. Forward-looking statements involve known and unknown risks and uncertainties that may cause the companies' actual results in future periods to differ materially from forecasted results. Such risks and uncertainties include, but are not limited to, market conditions, competitive factors, the ability to successfully complete additional financings and other risks.
    Century Pacific Financial Corp.

    CONTACT: Mark Taggatz, Investor/Media Relations, Century PacificFinancial Corp., +1-951-244-2828

    Web site: http://www.centurypacificfinancial.com/

    (See Story from BioSpace.com) (09/22/2004)

    Related Companies

    * Limina Biotechnologies, Inc.:
    Profile, News "
    [This Message was Edited on 06/03/2006]
  15. Marta608

    Marta608 Member

    I still think there are probably many causes of CFS, not just one, but I like that researchers are working at it! Enough people pursuing answers and someone is bound to find something or things that will give us some help.

    Marta
  16. woofmom

    woofmom New Member

    Who are the real financial backers of these studies? What types of financial interests do board members have in finding a "cure"? Are any of these people connected in any way with the makers of formaldehyde, mercury, aspartame, flouride, pesticides etc.? Two hundred years from now people will look back and say "Those idiots were poisoning themselves". Everyone in the world probably has some kind of virus, pathogen or whatever in their system. Why isn't everyone sick? The only way I'd trust any of the research is if people were "cured" immediately.
  17. Windytalker

    Windytalker Member

  18. findmind

    findmind New Member

    Windytalker and woofmom,

    Really, wouldn't we all love a cure???

    But I think we'll see MS and the epilepsy problem treated before they touch CFS patients.

    If they cure MS because they found this parainfluenza-5 in them and made a specific med, then they could try it "off label" in CFS patients, couldn't they?

    Of course, a lot of us seem to have some type of "epilepsy" problem, too!
    So maybe we would be eligible for the treatment that way?

    So many questions, no answers...

    But there's always HOPE!
    findmind
  19. findmind

    findmind New Member

    The Virology Section of the ncf-net.org's research section!!!

    The 2 specific PIV-5 articles are long, but very, very interesting. They
    relate how the NCF kept interviewing different researchers worldwide, in order to pinpoint and/or confirm the PIV-5 research and conclusions.

    Especially interesting was how the Professor of Laboratory Medicine and Director of the Virology Labortory at Yale University, a Dr. Mrie Landry, encouraged the NCF to stay focused and to remain on the trail of PIV-5! She felt strongly that it played an important role in human diseases!

    The NCF seems to have contacted many experts in the field in order to validate not only Dr. Robbins original patent/research, but also for their own funded researchers to confer with while they searched PIV-5 further.

    This reminds me of the book we've been discussing, by Drs Garth and Nancy Nicolson (Ph.Ds), Project Daylily, and all the shenanigans that seemed to be going on regarding the Gulf War illness and mycoplasma infections.

    Despite our misgivings, many researchers make low salaries, and getting patents on their original work and making money off it is all part of the research field.

    Think about it, every co./person that finds a better safety feature for a car
    can get patents on their invention and make money for years to come. Same thing happens in medicine.

    I don't begrudge them a way to make the money; however, I feel there must be some type of system in place that is moral, that is, important health findings that would keep people from suffering must have a way to be made public while protecting the interests of the researcher.

    Does anyone know of such a system? I'd love to hear about it.

    Check out the full story at ncf-net.org. Even they have questions, same as us.

    There's always HOPE!
    findmind
  20. woofmom

    woofmom New Member

    I'm sorry but I can't help but wonder if attention is being diverted away from the chemicals that are harming everybody. When I look back, I think about cigarettes, asbestos, DDT, Teflon, and all the other things that were maiming and killing people. I don't trust the studies. The Fraud and Drug Administration and "studies" have said that aspartame is safe. If I hadn't learned two years ago about it"s harmful effects, I'd probably be dead by now.