1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Leptin
Andrew Gladman reflects upon the recent IACFS/ME conference and the buzz surrounding a small molecule, leptin.
Discuss the article on the Forums.

Tweeting the Invest in ME Conference: Rituximab, Biomarkers, Progress....What We Learned

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Jun 2, 2012.

  1. Phoenix Rising Team

    Phoenix Rising Team

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    View the Post on the Blog
    Gamboa likes this.
  2. Enid

    Enid Senior Member

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    Thanks Cort, looking forward to hearing their latest findings from the Iime conference. Great to see them getting together and "brainstorming" - the way forward now.
  3. Enid

    Enid Senior Member

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    My comment has come twice here Cort though only posted once and listed as one. Could be a "bug" in the system ? (over and above my own !) The error on Home Page only.
  4. Sasha

    Sasha Fine, thank you

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    Thanks for putting this together, Cort - after reading about this conference I feel the most optimistic about progress than I have done in years. I think we're going to have an exciting year.

    Do you know what we can expect in the next few months? I know Lipkin's XMRV study results are supposed to be announced at the end of this month. What other dates can we look forward to?
  5. Jorgen J

    Jorgen J

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    Thanks for the summary, Cort! It was a really interesting conference this year, and it seems to be quite a few things in the pipeline - both study results and upcoming research initiatives.
    Best regards,
    Jorgen Jelstad
    justy and Sasha like this.
  6. Cort

    Cort Phoenix Rising Founder

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    Thanks Jorgen for giving me the opportunity to do the summary with all those interesting tweets :)
  7. Cort

    Cort Phoenix Rising Founder

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    Hmmm....Dates...the only toher thing I know that wrapped up recently is the UK Lightning Process adolescent study. We're waiting on a couple of studies from the first round of the CAA's studies - the Logosomix and the gut microflora study....and as I remember quite a few studies at the NIH, several on POTS and orthostatic intolerance, are wrapping up this year..

    Oh yes, Huber's HERV-K18 endogenous retrovirus and superantigen study is due this year.

    Kogelnik will be bring out more stuff with the Open Medicine Institute as well.
  8. Cort

    Cort Phoenix Rising Founder

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    yep. the comments are getting doubled - that's for sure..
  9. Cort

    Cort Phoenix Rising Founder

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    Except the last one wasn't...maybe the gremilin is gone! :)
  10. FancyMyBlood

    FancyMyBlood Senior Member

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    Cort you said something about a 'big splash' coming out in the next two months. I think this was february or march. Is it delayed, because I haven't seen a big splash yet:(
  11. akrasia

    akrasia Senior Member

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    Cort wrote:

    "It may be that CFS was doomed to limbo status until the technology able to reveal it was developed."

    I think this is going to be the defense of a medical establishment that refused to accept the challenge posed by M.E. decades ago. But it won't do.

    It does a disservice to all the doctors, researchers, and lay people who understood the gravity of the illness and did their best with very little means to address the ongoing catastrophe.

    As Vincent Racaniello has said, his colleagues turned their back on complexity, a cardinal sin against intellectual integrity.

    There was nothing preordained about this. We weren't "doomed" to experience this illness in this way. Choices were made by people who, at the very least, should have known better. It didn't require extraordinary powers of discernment, just an open mind, like Melvin Ramsey, for example, who in 1956 didn't need next generation sequencing or nano this and that to recognize, name, and describe what he saw.

    As Harvey Alter said recently, you need to decide this is a disease worth studying. Argumentum ad technology as an explanation of why m.e. was not taken seriously doesn't cut it. If we had received the funding we deserved and the institutional support we deserved, legitimacy and research would have followed.
    garcia, Sing, rlc and 4 others like this.
  12. Anne

    Anne

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    Cort, whatever happened to the (second) Baraniuk study on proteins in spinal fluid?
  13. justy

    justy Senior Member

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    Thanks Jorgen for the tweets - and to Cort for putting it together on here.

    Interesting that there was no discussion on GcMAF or MAF probiotic yoghurt - treatments that seem to be buzzing on the forums right now!

    Anyway - ive pre-ordered my DVD from the conference and look forward to watching all the presentations when it arrives. I really hope to be there next year!
    all the best, Justy.
  14. Cort

    Cort Phoenix Rising Founder

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    It's funny it wasn't mentioned; its definitely done or near done - he must have had 5 or 6 posters on it at the IACFS/ME Conference.....maybe he didn't talk about it or maybe Jorgen was out of the room or maybe....I don't know...Its coming though.....:)
  15. rlc

    rlc Senior Member

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    Hi akrasia, agreed it is not true that CFS was doomed to limbo status until the technology able to reveal it was developed." Serious failed tests results have been found in ME patients since the mid 1980s, including failed MRIs, SPECT, PET, EEG scans, Tilt table tests, anomalies in the immune system have been shown for decades like low NK cells, RNase L etc, and viral infections like Enteroviruses, EBV HHV6 have consistently been found. This scientific evidence has been systematically and deliberately ignored by the powers that be in certain countries all this time. There is thousands of scientific studies that show the physical and serious nature of this condition. Instead of acting on this information in both the US and UK, CFS criteria have been written that effectively ban the use of any of the tests that show these anomalies in ME patients, and have instead implied that it is some sort of Psychiatric condition.

    The CDC itself was aware that patients in the lake Tahoe epidemic had failed MRI scans that showed AIDS like lesions, and were aware that this outbreak was similar to other epidemics of ME in the states and other parts of the world going back to 1934, and they ignored the epidemic nature of this disease which strongly implies that it must be caused by an infection, it is proven that the CDC was aware of this before inventing CFS, by an article written by Dr Stephen E Straus, who was also one of the principle writers of the first CFS (Holmes) definition, called The Chronic Mononucleosis Syndrome, published in the same month as the first CDC CFS definition, in which he mentions these facts see http://www.jstor.org/discover/10.2307/30136640?uid=3738776&uid=2&uid=4&sid=21100833009701

    Although it is looking very possible that modern technology may finally find the cause and a cure for ME, previous finding should have lead to ME being accepted as a very real physical disease, and lead to large amounts of money and resources being put into further investigating these findings, these findings should have been used to diagnose patients in a similar way to the how MS is diagnosed, nobody knows the cause but tests can be done to confirm the diagnosis, ME should never have been portrayed as a psychiatric illness, because psychiatric illness don’t cause lesion in the brain!

    It is very plausible that in the future we will see the likes of class action cases taken against the powers that have ignored this disease and the science behind it for so long, and have portrayed the victims of this illness as if they are nuts and malingers, I think it would be a great shame if statements made by the founder of one of the biggest forums on the web end up being used by the defense! Please be careful how you word things Cort.

    All the best
  16. Hip

    Hip Senior Member

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    Quote: "Mella reported that 40% of patients have relatives with autoimmune disorders – a startlingly high number - and a further indication of a strong genetic component to this disorder"

    These autoimmune disorders running in the family might also be evidence of viral influence, since families living in close proximity in the same household for years, sharing the kitchen, bathroom, etc, would also tend to share the same viruses.
  17. jace

    jace Off the fence

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    Agreed, Hip. It could indicate genetics or it could indicate a wimpy, hard to catch virus or retrovirus.

    On another subject, yesterday this was tweeted.

    Jørgen Jelstad ‏@DeBortgjemte
    Columbia uni & @CII722 says Lipkin XMRV-study not due for release on June 30th. Info given in lecture in London was wrong.
  18. justy

    justy Senior Member

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    Yes it could be a viral thing - but also points more towards the autoimmune case. Autoimmunity is known to run in families - causing not necessarily the same disease, but another autoimmune illness. In my family my mother has had severe thyroid issues for years, and asthma - i have M.E and my daughter has an as yet undiagnosed illness that looks like a cross between M.E and Crohns disease.
  19. user9876

    user9876 Senior Member

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    Also women tend to suffer more from auto immune diseases than men, I believe its something todo with women having stronger immune systems.
    justy likes this.
  20. shannah

    shannah Senior Member

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