1. Patients launch a $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!
Never Ask Us if We're Hungry -- The Answer's Always No
There are three of us here and for many years, none of us ever got hungry. When our brains would turn to mush, when our faces would go numb, and we would start the invisible vibration which is the signature dance of ME/CFS, we knew we needed to eat.
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Where are we on understanding and treating ME/CFS today?

Discussion in 'General ME/CFS News' started by richvank, Apr 4, 2012.

  1. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I think it is clear from the many responses that you have received that "most sufferers with ME/CFS " (at least as represented on this forum) do not think that Electro Hyper Sensitivity is at the root of their illness or even plays a significant role. Many of us have been able to eliminate this as a cause by living in an environment where it is absent or minimal.

    Everyone's experience and analysis of this illness is welcome, but we have to realize that one person's experience is not representative of everyone's.

    Sushi
  2. Wayne

    Wayne Senior Member

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    Ashland, Oregon
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  3. Wifi123

    Wifi123 Senior Member

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    Yes, it has been proven that the metal in the springs radiate, I discovered that by accident, when we changed from an old coil spring mattress to a all foam mattress. I began to sleep more peacefully, but didn't assume the mattress change was the reason. But, as I got older the foam mattresses was extremely heavy and I struggled trying to turn it over. We went back to another form of metal coils (Stainless steel), because of all radiation within our area from extreme wireless technology and my extreme suffering there is no real solution to my problem, but all I want to do is speak out and warn other sufferers of this insidious health cause. I just keep fighting the best way that I can.
  4. barbc56

    barbc56 Senior Member

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    Out of curiosity, how has the above been proven? I can't find any studies on PubMed but that doesn't mean they're not there. I will keep looking for citations.

    Ancedotal experiences may or may not reflect the science or follow what knowledge we have about the human body.

    I certainly don't want to discount your improvemen but there could be a myriad of other reasons for this. It could be placebo, the fact that our DD cycles as well as other factors.

    I can only speak for myself but I would be very hesitant about taking Dr. Mercola's medical advice. He promotes many ideas that have not been proven by science. I will be glad to come back and list them if need be but am time constrained at the moment.

    Do you have a theory why this would cause some people to get sick while others don't.

    Take care.

    Barb C.:>)
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  5. Wifi123

    Wifi123 Senior Member

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    A research (June issue of the journal Pathophysiology) was conducted by Örjan Hallberg of Hallberg Independent Research in Sweden and Ollie Johansson of The Karolinska Institute in Sweden and they noted that the cancer rate was 10% higher in the left-side bias for both men and women and also was noted in regards to skin cancer melanoma. They explained that what they discovered points to a common cause for these cancers researched (breast, other, and melanoma), it may change your sleeping habits.



    They noted that the increase of breast cancer and melanoma have increased steadily in the last 30 years, and it’s known that exposure to the sun elevates the risk of melanoma, but the sun’s intensity has not changed in the last three decades, and they discovered that the melanoma being discovered these days are hip, thighs and trunk, which are areas of the body protected from the sun. They then decided to research what is responsible for the left-side dominance and increasing incidence of these cancers?



    An intriguing clue comes from the Far East. In Japan there is no correlation between the rates of melanoma and breast cancer as there is in the West, and there is no left-side prevalence for either disease. Moreover, the rate of breast cancer in Japan is significantly lower than in the West; only 3 percent of what is seen in Sweden, for example. The rate of prostate cancer in Japan is only 10 percent of that in the U.K. and U.S.



    The researchers suggest an explanation based on differences in sleeping habits in Japan and Western countries. Previous research has shown that both men and women prefer to sleep on their right sides. The reasons for this general preference are unclear, but sleeping on the right side may reduce the weight stress on the heart, and the heartbeat is not as loud as when sleeping on the left. Still, there is no reason to suspect that people in Japan sleep in positions that are any different from those in the West. The beds in Japan, however, are different. The futons used for sleeping in Japan are mattresses placed directly on the bedroom floor, in contrast to the elevated box springs and mattress of beds used in the West. A link between bedroom furniture and cancer seems absurd, but this, the researchers conclude, is the answer.



    The first line of evidence they cite comes from a 2007 study in Sweden conducted between 1989 and 1993 that revealed a strong link between the incidence of melanoma and the number of FM and TV transmission towers covering the area where the individuals lived. Despite epidemiological correlations like this one suggesting the possibility that electromagnetic radiation from FM and TV broadcasts stations could suppress the immune system and promote cancer, the strength of these electromagnetic fields is so feeble it has been difficult to imagine any biological basis for the correlation.



    Consider, however, that even a TV set cannot respond to broadcast transmissions unless the weak electromagnetic waves are captured and amplified by an appropriately designed antenna. Antennas are simply metal objects of appropriate length sized to match the wavelength of a specific frequency of electromagnetic radiation. Just as saxophones are made in different sizes to resonate with and amplify particular wavelengths of sound, electromagnetic waves are selectively amplified by metal objects that are the same, half or one quarter of the wavelength of an electromagnetic wave of a specific frequency. Electromagnetic waves resonate on a half-wavelength antenna to create a standing wave with a peak at the middle of the antenna and a node at each end, just as when a string stretched between two points is plucked at the center. In the U.S. bed frames and box springs are made of metal, and the length of a bed is exactly half the wavelength of FM and TV transmissions that have been broadcasting since the late 1940s. In Japan most beds are not made of metal, and the TV broadcast system does not use the 87- to 108-megahertz frequency used in Western countries.



    Thus, as we sleep on our coil-spring mattresses, we are in effect sleeping on an antenna that amplifies the intensity of the broadcast FM/TV radiation. Asleep on these antennas, our bodies are exposed to the amplified electromagnetic radiation for a third of our life spans. As we slumber on a metal coil-spring mattress, a wave of electromagnetic radiation envelops our bodies so that the maximum strength of the field develops 75 centimeters above the mattress in the middle of our bodies. When sleeping on the right side, the body’s left side will thereby be exposed to field strength about twice as strong as what the right side absorbs.



    If this study is correct, the solution is simple: Replace the metal in our beds with a nonmetallic mattress or orient your bed, like an antenna, away from the direction of the local FM/TV transmission tower. Call it high-tech feng shui if you like, but if this new study has not identified the cause of left-side cancer, it will, for some, be the cause of insomnia.
  6. barbc56

    barbc56 Senior Member

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    Will you please cite the original study? Thanks.

    ETA Maybe there should be a separate thread on this issue?
  7. Jenny

    Jenny Senior Member

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    Doesn't apply in my case, I'm afraid. I came down with ME over 30 years ago, before I had ever used a computer or mobile phone.

    Jenny
  8. Wifi123

    Wifi123 Senior Member

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  9. barbc56

    barbc56 Senior Member

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    It's not a study but an opinion blog. It only shows correlation and as we all know correlation does not mean causation. The classic example is we all drink milk and we all die. Therefore milk causes death.

    I've said more than enough about this "theory".
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  10. RivkaRivka

    RivkaRivka Senior Member

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    Please forward widely



    All are invited to the
    ME/CFS, Lyme and MCS community's
    Memorial Service
    for
    Rich Van Konynenburg
    on
    November 18, 2012

    == What When Where ==

    WHAT: Memorial Service for Rich Van Konynenburg, researcher and leader in the ME/CFS, Lyme and MCS communities.
    WHEN: Sunday, November 18, 2012. At 2 pm EST USA; 11 am PST USA; 7 pm London/GMT. We'll end the memorial after everyone who wants to share has had a chance.
    WHO: Especially welcome are those from the ME/CFS, Lyme and MCS communities. However, this is also open to anyone anywhere who wants to join us in remembering and honoring Rich.
    WHERE: This memorial service will be held as a telephone conference call. Call in using a landline telephone, mobile phone or computer phone. So even if you are bedridden in California, the UK, Australia or anywhere, you should be able to join us if you can use a phone to call the USA.
    HOW: The conference call dial-in phone number is: 805-399-1000. When prompted, key in the Participant Access Code: 997436#. The call will cost the normal fees associated with a long distance phone call to the USA, and no more.
    INTERNATIONAL CALLERS: Consider using an international calling card. Or if you have Skype, go to your Skype account and click on "Call phones" and it will allow you to pay for the call. If you do not have Skype, you can download a free account at Skype.com. There, read how to buy Skype credit for making outgoing calls (that you would pay for). Or read how to buy Skype "Pay As You Go" minutes. Do all this prior to the day of the memorial service. After you select one of these options, on the day of the memorial service you will dial in to the conference call by using the same phone number (805-399-1000) and the same Participant Access Code (997436#) as listed above. NOTE: Calling from your mobile phone to join the USA conference call may be much more expensive for international Skype users than calling from a landline phone. Plan accordingly.
    PLEASE SHARE: On the call, you will have an opportunity to "raise your hand" to indicate you wish to speak. Please keep your sharing to under two minutes, so all who wish to share can do so.
    RSVP: There is no need to tell us you are attending, just come!
    QUESTIONS: Contact Rivka(at)ThatTakesOvaries(dot)org

    == Details ==

    On Sunday, November 18, 2012, please join members of the ME/CFS, Lyme and MCS communities in saying "Thank you; We love you; Goodbye," to our beloved community leader, Rich Van Konynenburg.

    We will be joined by Rich's wife, Diana; Dr. Neil Nathan, who worked with Rich on his Simplified Methylation Protocol; and Dr. Derek Enlander, who has known Rich for over a decade -- as have many of us.

    Together, as a community, we will gather to grieve, mourn and begin to heal from this deeply felt loss. And the loss is substantial. Rich was a well-known community leader, a man who posted thousands of health and research related messages on the various ME/CFS, Lyme and MCS forums and listservs -- all about trying to help us, to alleviate our suffering, to make our lives better.

    Rich was the most accessible researcher we ever had, unfailingly answering our thousands of questions and concerns, not just because this was an intriguing scientific puzzle but because he cared about us. His wife Diana recently described how his large office overflows with papers, spilling out into the next room. Many of those stacks of papers are our test results that he tirelessly analyzed for us, without asking for anything in return, just so he could help us understand complicated situations and decide complex next steps in recovering our health. Diana describes how Rich would come to the dinner table at night and talk about his research discoveries and understandings, and how he'd be so happy when he could make our lives a bit better -- and how he'd be deeply sad when he witnessed our suffering. He would weep when we wept, he would rejoice when he could help us. And there are many people he did help, both through his scientific analysis and his compassion.

    Join us at this memorial service to tell us what Rich meant to you. Share your memories and personal stories of Rich, and read excerpts from emails/posts he sent you. This small act of sharing will help all of us grieve our loss and allow the healing to begin.

    For questions, please email: Rivka(at)ThatTakesOvaries(dot)org
    Nielk likes this.
  11. Allyson

    Allyson Senior Member

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    Hi GC Maf, no i dont think wearing the compression clothing removes toxins...i never understnd what thetr term means i am afraid.
    I think it forces fluid back into the venous symptoms from the lymphatic system
    Is is used in orthodox medicine - as is massage - for , for example, lymphoedema resuting form cancers
  12. Allyson

    Allyson Senior Member

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    So sorry to hear of the death of Rich and wish to acknowledge his generous and many wonderful contributions over the years..
    Hi s wisdom and insight was as appreciated as his generosity in sharing.


    I had just posted this post below when I saw the terrible news.

    I have left it up edited slightly as I will lose it otherwise.

    My specialist thinks it may all be due in my case to " stretchy veins " in the Ehlers Danlos (EDS) spectrum
    so that when i stand up i get inadequate blood to the brain
    (yesterday my BP dropped 20 points in a minute when i stood up - from 125 to 105 systolic but then returned to 125 within 5 mins) so adrenaline must have kicked in quickly
    this instant adrenaline release happening constantly may be the cause of many ofl our problems
    (possibly leading to low Cerebral spinal fluid levels too which exacerbates things further)
    maybe a high protein diet helps as it helps build collagen to strengthen the veins
    IM Vit B12 increases blood volume so may help because of that
    certainly since he suggested this i have been observing my position in relation to symptoms and noticing a definite correlation
    eg. resting sitting up does me no good so it is not the resting that helps but the lying down
    yes i am ill after being upright- no exertion needed
    and i am better after a day or two lying down
    and it would explain why we have an energy boost sometimes for no apparent reason...eg in the evenings or early mornig.. after lying down for 6 hours or so all day or night
    not wanting to be over simplistic here but would love to know if anyone has researched this aspect of the illness or if anyone else has observed this vcorrelation between posture and symptoms
    years of constant adrenaline boom crashes - and resulting in blood sugar boom crashes too - would take its toll on anyone.
    It should be easy to test and even predict crashes according to your position... and yes I know for sure that a certain amount of time spent upright ...even sitting up in a chair doing nothing... will cause me to crash, while after about 2 3 day slying flat my symptoms will improve or even disappear
    Not so easy to stay lying down and survive let alone live a life.
    Would love to hear everyone’s thoughts on this
    at a recent EDS conference it seems the list of symptoms closely overlaps ours.so they may be the same disease for at least some of us…and wiki is not reliable on EDS..

    cheers
    Ally
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  13. Allyson

    Allyson Senior Member

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    Regarding my post above, please feel free to copy and repost to other threads and forums as i think it is very important medical info that comes from orthodox medical sources of the top calibre.
    Lying down - getting horizontal - is the first thing most of us do when we fell crash coming on yet we do not mention it in lists of effective treatments.
    I would love to hear any feedback from others as to whether simply being vertical is eough to cause symptoms.

    Other symptoms such as photosensitivity are caused by the adrenaline releases and enough adrenaline over time could likely account for the muscle aches, tightness and joint pains etc etc over a prolonged period of time.

    The methylation theory could also be due to effects of surges in adrenaline and blood sugars over long periods and the damage they wreak o the body.
  14. Allyson

    Allyson Senior Member

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    illness later in life I was thinking Justy may be due to the collagen deteriotation.... the same thing that causes skin to sag as we get older .... but in the blood vessels and other connective tissue....hence even greater vasodilation and worse OI; an dgut problems ... just a possiblity but what is thought to help the skin - low saatarch diet high in omega 3s etc also helps us

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