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The IACFS/ME Conference in Ottawa: Sept 22-25, 2011

Discussion in 'General ME/CFS News' started by Gamboa, Jul 31, 2011.

  1. Boule de feu

    Boule de feu Senior Member

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    Thank you for this, Rafael.

    "Lipkin is definitely on board..."

    Pneumonia, pregnancy and deep coma... let's push the reset button.

    I love her enthusiasm and her drive.

    She is so involved and convinced that she will get to the bottom of things.
    She gives me hope. Never give up. =-)
     
  2. Cort

    Cort Phoenix Rising Founder

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    Its a poster. Lots of interesting work does not make it into the conference presentations.
     
  3. Cort

    Cort Phoenix Rising Founder

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    I don't know if he ties it into DRG - very interesting about the smooth muscles, though - that could indicate autonomic nervous system problems. Mangan went to IBS, Interstitial Cytisus, TMJ, etc conferences this year - he said they all were talking about the ANS and they all sounded like CFS patients, just a bit different.

    A New Working group called the CoMorbid Pain Working Group has just been formed at the NIH which includes CFS to look at the interconnections of all these diseases. Mangan says the group has high institute support.
     
  4. Cort

    Cort Phoenix Rising Founder

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    Peterson - Australia Connection

    Dr. Peterson has apparently a strong connection with researchers at Bond University in Queensland Australia lead by Dr. Staines. That group has 5 posters at the conference - all prelminary data suggesting that

    • MECFS patients have unusual immune responses to vaccination and vaccines may contribute to the disorder
    • the genes involved during pregnancy may be differently expressed in ME/CFS. They investigated this because many women with CFS feel better during some stages of pregnancy
    • The purinergic system was targeted by the Lights in their gene expression studies and the Staines/Peterson studies thus far suggest that was correct
    • microRNA expression in people with MECFS may be shutting down perforin activity in NK cells and interferring with cell suicide (used to kill infected cells)

     
    allyann and Snow Leopard like this.
  5. Boule de feu

    Boule de feu Senior Member

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    Too bad for Dennis... Like you said he has done so much in such a short period of time.

    I'm not surprised by his comment. Many of us do have all of these co-morbid conditions. I'm not surprised these patients are very similar to us... it is us! ;-)
     
  6. Cort

    Cort Phoenix Rising Founder

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    The good thing is that these other fields appear to be slowly realizing thatand hopefully findings in one field will inform findings in other fields. Put all these fields together and you have alot of resources.....I think the new Working Group is a very positive step....Clauw, as mentioned earlier, believes a similar problem pervades many illnesses - not just the so-called morbid disorders - and the medical field is on the way to realizing that and that it costs the system an enormous amount of money.

    10% of chronic pain patients are responsible for 90% of costs. They are resistant to opioids (which Clauw believes are way over prescribed) and other treatments.....Clauw noted the the opioid receptors in FM patients brains are already filled up.
     
  7. Anne

    Anne Senior Member

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    Thanks so much for reporting, Cort!

    Anything on the new treatment guidelines being developed by 1) the IACFS/ME and 2) the ICC group (apparently these are two parallel but somewhat overlapping developments)?
     
  8. Dolphin

    Dolphin Senior Member

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    The treatment guidelines are in the last section of the conference as I recall - should be covered soon.
     
  9. Enid

    Enid Senior Member

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    Thank you very much for answering my question on smooth muscles Cort - yes of course under the control of the ANS. So too the "hollow organs" - blood vessels, gastro tract, bladder, uterus iris, some kidney cells etc. So many here have these problems so we speculated.

    Have a good trip home Cort - so much for you to take in from the Conference.

    (Forgot to mention respiratory tract smooth muscle)
     
  10. CBS

    CBS Senior Member

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    Cort,

    You wrote in a tweet
    Which Jones were you referring to? And could you elaborate on the rest of Jones' comment? I find this statement quite shocking and I'm trying to put it in context. I imagine that most, it not all, serious diseases when left untreated would eventually result in a "barrage of signals from the body."
     
  11. Dolphin

    Dolphin Senior Member

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    Sounds like James (Jim) Jones who worked alongside Reeves and is still there. He wrote a paper previously buying into Peter White's interoception theory.
     
  12. ixchelkali

    ixchelkali Senior Member

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    Rafael, thanks for this. It's a real upper after a week of downers, and made me feel more hopeful. It was almost like being there. Interesting question you asked, too.
     
  13. ixchelkali

    ixchelkali Senior Member

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    Darn! Mangan was a breath of fresh air at the NIH, and I was starting to have hope for their program. I hope he's right and it doesn't end with his retirement. We just get somebody decent and they leave.
     
  14. mellster

    mellster Marco

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    I am really interested in the smooth muscles stuff as well. Knowing that pathogens might be well at play in IBS, it is also possible that they aren't or at least not forever. My IBS feels like my smooth muscles aren't smooth at all and constantly misfire or cramp in the gut so I get aches and a feeling totally opposite to what would be called a "fluid" body (if that makes any sense). Otherwise food moves through fine and gets reasonably digested, so I hope there will be a way to "calm" the ANS (I don't have any IBS/cramping at night) during crampy hours.
     
  15. Cort

    Cort Phoenix Rising Founder

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    Jones from the CDC on interoception. It was a very strange study looking at signals going into the insula I think. About all I understood was that it suggested that sensory information was flooding the brain at high rates - that was the easy part. There was alot on self/non-self - honestly it was almost incomprehensible.

    Miller from Emory/CDC who presented it said he didn't understand it either. The study was so 'different' that I imagine that it will get little play simply because few people can figure out what he's talking about. I imagine that Jones will be retiring soon and the CDC is giving him his last shot.
     
  16. Cort

    Cort Phoenix Rising Founder

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    He's very happy with the acting director and with the members of the CFS Working Group - so however comes in will have a good start. It certainly is a shame for us to lose him. We'll just have to hope that someone good steps in...You never know...
     
  17. CBS

    CBS Senior Member

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    Ironic given the amount of self delusion it must have taken to devise this twisted piece of self-serving BS (http://www.cfids-cab.org/rc/Jones-4.pdf). I definitely could use some of what he's been smoking.
     
  18. Enid

    Enid Senior Member

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    Wow ! and I thought we had the prize psychobabblers here.
     
  19. Dolphin

    Dolphin Senior Member

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  20. mellster

    mellster Marco

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    PHILADELPHIA, Sept. 26, 2011 (GLOBE NEWSWIRE) -- Hemispherx Biopharma, Inc. (NYSE Amex:HEB) ("Hemispherx" or the "Company") announced that it presented new data on a blood test for Chronic Fatigue Syndrome (CFS). CFS is a severe disorder consisting of profound fatigue and a variety of other debilitating symptoms that affects up to 4 million Americans. CFS places an economic burden on the Unites States estimated at more than $9 billion annually. The data presented at the IACFS/ME Biennial Conference held September 22-25, 2011 in Ottawa, Ontario, Canada is based on Chronix Biomedical, Inc.'s ("Chronix") technology, which analyzes DNA released into the bloodstream by dying and damaged cells and has the potential to detect genomic alterations unique to diseased cells. Previously, Chronix utilized Next Generation Sequencing (NGS) to generate sufficient DNA sequences to provide the statistical power to identify alterations in blood DNA from patients with breast and prostate cancer vs. normal healthy controls. The aim of this recent CFS study was to find signature DNA sequences from patients with CFS compared to healthy controls with respect to their diagnostic predictive value, as well as, to potentially provide new insight into CFS biology. DNA extracted from serum samples of CFS subjects and normal healthy controls was sequenced and compared to the human genome. A total of about 10,000 high quality sequence reads were generated from each serum sample and four genes were identified by Multivariate Regression that separated CFS patients from the normal control group with a c-value of 0.95. These results support additional studies with a larger CFS cohort using more powerful Massively Parallel Sequencing platforms with the aim of reduction to validated clinical assays for the diagnosis and evaluation of CFS and to explore whether the technology can be used to identify how different persons with CFS will respond to Hemispherx's experimental drug Ampligen(R).

    Chronix and Hemispherx previously announced (March 3, 2011) the filing of a joint patent application for a blood test for CFS based on this technology. Chronix and Hemispherx are currently planning to validate the ability of the approach to identify how different persons with CFS can respond to Hemispherx's experimental drug Ampligen(R). The blood test for CFS is experimental in nature and has not been evaluated by any regulatory agency. It is currently limited to investigational use.
     

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