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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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CFS & Low Level Radiation Exposure (NCF Study)

Discussion in 'Latest ME/CFS Research' started by shannah, Aug 20, 2010.

  1. shannah

    shannah Senior Member

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    National CFIDS Foundation (NCF) Announces Link between Chronic Fatigue Syndrome and Low Level Radiation Exposure

    Publish date: Aug 20, 2010

    http://appliedclinicaltrialsonline..../ArticleNewsFeed/Article/detail/684036?ref=25


    NEEDHAM, Mass., Aug. 20 /PRNewswire-USNewswire/ -- The National CFIDS Foundation Inc., of Needham Mass, has announced its formal disease model for Chronic Fatigue Syndrome (CFS) also known as Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) as well as Myalgic Encephalomyelitis (ME). According to the NCF, a subgroup of patients with CFS fit a unique disease profile based on a model for a radioactive toxin.

    Since starting its formal research grant program, the NCF has provided one million dollars in grant funding to pursue its own directed research to study ciguatera toxicology; a critical immune protein known as STAT-1; and myelodysplasia as well as myeloid leukemia -- all of which have been identified in the patient subgroup.

    According to Alan Cocchetto, Medical Director, "Our research suggested that a relationship existed between ciguatera poisoning, STAT-1 and myelodysplasia as well as leukemia. Early evidence also suggested that some type of catalyst was potentially involved in this disease process. Because of some very unique characteristics identified during the course of our research, what emerged was the potential for low level radiation to act as the catalyst to evoke a specific response that fit the profile for our patients. We believe this to be very important since radiation not only adversely impacts STAT-1 but it has also been found to cause myelodysplasia as well as myeloid leukemia, the very things we have been studying. In addition, the bystander effects associated with low level radiation exposure cause real problems at the cellular level and this unfortunately translates into an increased risk for cancer."

    Gail Kansky, President, stated, "The Foundation's real revelation came when our staff linked specific research on mitochondrial DNA deletions, first published by Australian scientists in 1995, to work published by scientists in Ireland in 2005. They had identified exactly the same unique mitochondria characteristics to be due to the direct effects of low level radiation exposure. This same defect had been mirrored in CFS but it hadn't been classified for ten years. Because this fits our disease model, we are pursuing additional research studies. There is no doubt in my mind that we have found several key pieces to this disease puzzle tied to our patient group." Furthermore, Kansky added "What is especially discouraging is that the global implications here could prove to be staggering!"

    The Foundation has also noted that CFS has been previously identified as a characteristic aftermath of radioecological catastrophe. A lengthier article including references will be in the fall edition of the newsletter.

    Founded in 1997, the goals of the NCF are to help fund medical research to find a cause, expedite treatments and eventually a cure for CFIDS/ME. The NCF is funded solely by individual contributions. Additional information can be found on the Foundation's website at www.ncf-net.org or in The National Forum quarterly newsletter. The NCF can be reached by phone at 781-449-3535.

    SOURCE National CFIDS Foundation
  2. taniaaust1

    taniaaust1 Senior Member

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    thanks for posting.. that is very interesting.

    This factor may be "one" of the MANY FACTORS in my ME. When i was a teen, i used to go horseriding with another, who's parents had a toxic waste dump site on the very end of their land, things were dumped and buried there which couldnt be dumped in the normal dumps. (i think this was like happening unoffically). Of cause me and her didnt ride in that area but umm the horses.. i think at times grazed in that area. The area i think was one of the horses back paddocks.

    10-11 years later both her and i ended up with CFS/ME. (my teen riding days were also when i ended up with severe mono but i didnt get the ME till over 10 years later).
  3. Tammie

    Tammie Senior Member

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    I couldn't find the specifics of the study on their site....would like to know more
  4. Chris

    Chris Senior Member

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    Hi; I too would like to know more, and am curious just what range of radiation is aimed at in this study. I have become more and more aware of the probably contribution of Radio Frequency electromagnetic radiation to my own case of CFS, and reading Robert Becker's books and the much more recent "Public Health SOS: The Shadow Side of the Wireless Revolution" by Camilla Rees and Magda Havas has further persuaded me. I am about to move from my high rise apt building on top of a small hill in Victoria and topped by a small forest of radiating antennae--a map of cell phone towers shows I am living right under the hottest spot in Victoria--to an electronically quieter part of town. Some have reported improvement after moving to the desert or wherever, and I wonder if part of their improvement has not been due to the decrease in exposure to RF and other electromagnetic radiation. I am going to read this new book "Earthing" too, having become interested for a while in BioMats and Bemers and the MRS 2000, which now strike me as probably potentially useful attempts to undo some of the damage done by our being cut off from the earth's natural EM field, and simultaneous exposure to high energy high frequency radiation, though removing oneself from the latter and recontacting the earth would seem better ways to go. Best, Chris
  5. dannybex

    dannybex Senior Member

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    Wasn't it the NCF that announced they had found THE cause of CFIDS back in 2006?
  6. Wayne

    Wayne Senior Member

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    Wireless Dangers

    An alternative health center in our area, Hidden Springs Wellness Center, found themselves in a position of having to do a crash course on the effects of wireless radiation, cell towers, etc. because of a proposed cell tower on top of a theater just a hundred or so yards away from their building.

    Just this past week, they gave a public presentation on their findings, and had some excellent handouts with a lot of information and links to go for more information. These handouts and links can be accessed at Wireless Dangers.

    Some of the topics included:

    1) Effects of wireless radiation on the blood brain barrier
    2) Cells going into fight or flight response from radiation
    3) Routers are about the worse offenders
    4) Baby monitors are about as bad
    5) 100% of electro-sensitive people have measurable immune system reactions to wireless radiation
    6) Health people can begin experiencing CFS-type symptoms from wireless exposure

    There's much more available. I think this is a topic that we should probably pay close attention to. I myself have heard that mold proliferates at many times their normal rate when exposed to various types of radiation.

    Throughout the meeting this past week, they often referred to the advent of our wireless radiation environment as the biggest experiment in the history of mankind. They may be right on this count.

    Best, Wayne

    P.S. Hey Chris, thanks for posting all that good reference information. I think these are some of the same sources that the health center relied on.
  7. dannybex

    dannybex Senior Member

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    Hi Wayne and all...

    I didn't mean to belittle the possibility that EMF's and other low level radiation may be important pieces of this puzzle, as they certainly might, depending on the person, and of course the level of radiation.

    It's fascinating (and frustrating at times) how some folks can go through life, seemingly impervious to almost any sort of thing or things that trigger health problems in others, and regardless of the NCF's past proclamation(s), this topic is certainly an important one to discuss.
  8. Mark

    Mark Acting CEO

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    Interesting. I remain curious about the cluster of cancers from people who worked in the Rutherford Building (where beta radiation was discovered) at Manchester University. It recently emerged that the building was secretly decontaminated a few years after I took a study course in that building...I agree there may well be many factors at play in ME/CFS, and that's definitely one I haven't discounted...
  9. beachlover1957

    beachlover1957

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  10. Dolphin

    Dolphin Senior Member

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    I hope any theories they have get published in the medical/scientific literature. With the internet now, lots of people can put up all sorts of theories on websites. But I think they won't have that much of an influence unless they are in journals. For one thing, if they are not in a scientific journal, it makes it hard for somebody else to quote them.
  11. MDL

    MDL

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    You may be interested in this study for which the NIH is currently recruiting: "Relationship Between Mitochondrial Dysfunction and Fatique in Cancer Patients Following External Beam Radiation Therapy"http://http://clinicaltrials.gov/ct2/show/NCT01143467

    Although it is not directly related to CFS patients, they cite my hypothesis "Lemle MD. Hypothesis: chronic fatigue syndrome is caused by dysregulation of hydrogen sulfide metabolism. Med Hypotheses. 2009 Jan;72(1):108-9. Epub 2008 Sep 16." and are examining patients with clinically localized prostate cancer.
  12. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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  13. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

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    Thought provoking thread.

    Interesting how there was a large increase in ME/CFS in the 1980's about the time that companies switched over from typewriters to computers. The illness has been referred to in the media as 'Yuppie Flu' which I always understood to be a reference to the large number of City workers that appeared to come down with the illness initially (in the UK/London anyway) - presumably this area (ie the finance district) was one of the first 'civvie street' industries to adopt and invest heavily in IT and mobile phone technology. Initially IT and mobile phones were military applications, but their use gradually spread throughout industry and then into the home.

    In the 1990's I worked for a UK documentary TV company and one of our programmes made reference to the effects on the brain which could be inadvertently induced in people living near strong electromagnetic fields (or devices producing EMF's) - especially fluctuating ones. People can hallucinate all kinds of apparations due to the effects of these fields on the brain and they mess with body chemistry pretty unhelpfully (MDL - does this link in with your findings of Hydrogen Sulfide dysregulation?). Living next to a radio buff for eg apparently could cause some pretty unpleasant, hallucinatory effects and physical disturbances eg headaches, fatigue, tingling, illness ..! Additionally, we found out that apparently many electricians can get cancers of various sorts due to the proximity and length of time they spend around these fields.

    As I had started to get ill myself around this time, immensely fatigued and having bizarre sleep disturbances, all of which was starting to affect my work and general well being, I hired someone, recommended by one of our programme consultants, to come and assess my London flat with an appropriate piece of technological gadgetry designed to measure such fields (forgotten name of).

    Although initially sceptical, he advised me to move house having completed his survey, adding surprisingly that other countries wire their houses differently to the UK and that if my flat was in Germany, where apparently they take the adverse health consequences of these fields more seriously, no one would be allowed to live there. He traced the disturbance to an electrical junction under the pavement by our front door. The only other house in the street with a similar junction was the only other house in the street where the same fluctuating readings occurred. Maybe not enough scientific evidence to justify a government policy change, but - given my bizarre symptoms - enough evidence for me to move house.

    I've no idea today whether earlier research has been corroborated further or not (our programmes were made in the 1990's), although the World Health Organisation were reportedly working on this at the time. But I imagine, given the interests involved, that one would get about as much research cooperation from big industries and government in a field such as this, as one would get trying to find out if XMRV is present in vaccine supplies - close to zero! Its just not in the commercial interest. However, if we are the canaries in the mine, perhaps its about time it was in everyone's interest to investigate this more seriously - or at least, to take it more seriously.
  14. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

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    Forgot to mention - also check out Wayne's thread here on PR Forums 'Earthing' (by Dr Sinatra MD, Cardiologist).

    http://www.forums.aboutmecfs.org/showthread.php?6135-quot-Earthing-quot-for-Protection-from-EMFs

    Haven't tried this yet, although did sleep out on a hillside for 3 days and nights next to a waterfall, at start of illness, to try and get better, (back to nature etc), but just felt terrible. (Maybe I used the the wrong type of sleeping mattress?) Yes folks, when we say we've tried everything to get well, we mean EVERYTHING!
  15. MDL

    MDL

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    My apologies for the extra link.

    The trial will be in Bethesda, MD, I believe. You could call the number listed to see if they are testing elsewhere.
  16. Chris

    Chris Senior Member

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    Hi, Picture of Health, I think most camping mattresses would provide pretty good insulation from the earth, so I don't think that was a fair test of the "Earthing" hypothesis, which I still find intriguing in a far out way; but I am about to move from my apt in a building topped by a forest of cell phone etc. relay towers, and intend to try one of those "grounding" bed sheets mentioned in the book--like you, I'll try anything that is not evidently crazy or uberexpensive. Good luck to all of us till the real docs get us figured out, Chris
  17. mojoey

    mojoey Senior Member

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    When the NCF decided to ask Dr. De Meirleir for his resignation and ignore the fact that XMRV was discovered in CFS patients, I decided to ignore the NCF altogether.
  18. BEG

    BEG Senior Member

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    But didn't Dr. de Meirleir sit on/ hold back information on STAT 1 and its relationship to cancer? If true, that wasn't very helpful.
  19. Cloud

    Cloud Guest

    Dr Kenny has been the subject of rumors about selfish actions clear back from the early Red Labs days. True or not (I suspect not), I choose to see him as an extremely valuable asset to our community. Besides, I'm sure his liabilities are far outweighed by the tremendous amount of good he has contributed to ME/CFS research.
  20. beachlover1957

    beachlover1957

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