1. Patients launch $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!
First Direct Evidence of Neuroinflammation - 'Encephalitis' - in ME/CFS
A small study with just nine patients has captured the attention of patients and researchers alike after reporting direct evidence of inflammation in the brain of ME/CFS patients. The finding was one of the highlights picked out by Professor Anthony Komaroff in his IACFS/ME...
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Article: Getting IN and Staying IN

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Oct 1, 2010.

  1. Phoenix Rising Team

    Phoenix Rising Team

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  2. Enid

    Enid Senior Member

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    Lovely positive article Cort - and a little in the UK with people coming together on all fronts. Not quite your pioneering spirit yet. But wewill get there !:victory:
  3. BEG

    BEG Senior Member

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    Great article, Cort. About the vacant former Reeves position, it seems to me that this is going to be pivotal. The person at the top is a reflection of the whole organization. Are there any rumors of candidates?

    Secondly, SHOW ME THE MONEY should be the battle cry for all of us. This is the right time. We can't miss it.
  4. Sing

    Sing Senior Member

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    CDC Postion Status?

    Another helpful overview, Cort! But would you clarify the status of Reeve's former position at the CDC. Are they actively looking for a team leader or have they suspended a search until they have more clarity--your hypothesis--or have they closed off the idea?
  5. Berthe

    Berthe Senior Member

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    I always look forward to your articles. You have put a smile on my face this evening. Thank you Cort.:sofa:
  6. Cort

    Cort Phoenix Rising Founder

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    I really have no idea about the CDC - all I know is that they re-opened or kept open the job listing. I did ask Kim McCleary about that a couple of months ago and she said she's just about given up trying to figure out what's going on over there. I certainly hope that they've decided to keep their options open in case they need to.


    Thanks Berthe - just looking at your avatar with your lovely smile puts a smile on my face ;)
  7. citybug

    citybug Senior Member

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    What is the second Ian Lipkin study? I know Amy Docker Martin said he will be overseeing the blood test comparison between the labs for XMRV, and he is on a top committee. I'm very glad his expertise will be applied to questions that come up regarding the tests, but is he involved in any studies himself? I would like to put the ace pathogen hunter to work. Is he running a lab working on this?

    All the NIH is doing (from the XMRV conference Q & A) is working on a standardized test, maybe a broader sampling of the blood supply after that. I can see how this is important, but I don't see any ME/CFS studies and I don't see how this precludes further research.

    What happens when there is a test and millions of positives and they haven't funded any research into the pathology? I think it is crucial for Collins to fund the WPI follow up studies on the immune system (previously rejected) and neurotoxic effects of the various HMRV envelopes. NCI, WPI and Singh have tests and focus and patients.
  8. Cort

    Cort Phoenix Rising Founder

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    My understanding is that he is working with Dr. Montoya in Stanford in a complete analysis of pathogens in Montoya's CFS patients (which may be somewhat different than the run of mill patients. I believe they have to have some immune abnormalities or pathogens????Someone who knows better can probably clear this up).

    My understanding is that the DHHS group is focused on finding a blood test but the Lipkin group is focused on XMRV prevalence in CFS as is the Singh study.

    My guess is that the NIH is sitting and waiting to nail down XMRV before they commit any more real money to it. Hopefully we'll know sooner rather than later.
  9. Marco

    Marco Old blackguard

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    I'd hoped to raise this issue in relation to the Time to Act article but computer problems have kept me offline for a few weeks. Still, the issue is still relevant if we are talking about the urgent need to lever a commitment to properly resource ME/CFS research and infrastructure while we are a 'hot topic'.

    At the end of the day, in the current context of budgetary restraint, the only lever likely to succeed is political pressure.

    If I can digress a little, I have just finished reading a fascinating little book - Taliban by Ahmed Rashid. American foreign policy in relation to Afghanistan during the Clinton era was, post Russia, to continue to support the Taliban on the basis that any force that could deliver relative peace and stability in the region should be supported regardless of its complexion. US policy in relation to the Taliban shifted dramatically, not because of a fundamental reassessment of policy, concern for non-Sunni Afghans, or the imposition of an extreme form of Sharia law per se. US support for the Taliban became untenable because of how the Taliban's interpretation of Sharia law impacted on Afghan women - creating outrage amongst American feminist groups, appalled that the administration could support such treatment of women. The Clintons were particularly vulnerable to these protests as both Bill and Hilary relied heavily on the women's vote as a key part of their constituency. What changed the State Department's mind therefore was not issues of principle or geopolitics but simply an order from above to relieve the Chief's domestic political difficulties.

    So ..

    We're coming up to crucial mid-terms with a Democratic incumbent who also relies heavily on women's and minorities' votes. Much as I disagree with (and don't fully believe) the premise, ME/CFS has been portrayed as predominantly a women's disease and responsibility at Federal level currently resides under women's health. Additionally, despite the original tag of 'Yuppy Flu', didn't CDC's (or Jason's I can't remember which at the moment?) population studies suggest, once under-reporting was eliminated from the equation, that ME/CFS also disproportionately impacted on lower socio-economic groups and ethnic minorities.

    If NIH wish to label ME/CFS as a women's' issue then isn't it time we used this to our advantage and involved feminist groups?


    How would the current administration react to a full page national ad that said something along the lines of :
    • ME/CFS is a serious neuro-immune disease that affects some X million Americans;

    • Only X% of sufferers ever return to full health and fewer than X% are able to continue working;

    • The cost of ME/CFS to the US economy is estimated at X million per annum

    • ME/CFS is associated with an increased risk of developing (X, Y and Z) and ME/CFS sufferers have been found to die prematurely from (X, Y, Z);

    • ME/CFS has recently been associated with a human retrovirus and government officials are currently studying how this might affect the nation's blood supply;

    • X% of ME/CFS sufferers are women and the disease also disproportionately affects the poor and ethnic minorities; yet the current administration currently spends more money on researching hay fever?


    Please don't think I'm being partisan here. We are where we are and we have to use whatever levers are available to us. Plus all the politicians have to do is to do the right thing.
  10. Cort

    Cort Phoenix Rising Founder

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    Beautiful Marco and a great illustration of the power available to us. The key to me is that we do have the numbers. We are not a little disease struggling for funding - we are a major disorder that costs the American economy as much as 20 billion dollars a year and for which the NIH spends about 4 million dollars a year. That's chicken feed - and all we're asking for at this point is a bit more chicken feed - not alot! The NIH surely spends much more simply administering HIV grants than they do on researching CFS.

    Plus we have this tie in with the other predominantly female oriented disease groups - that are also being underfunded. Plus there are more and more females in positions of power.

    Its not like we're being a little underfunded - we're being almost completely ignored. 800,000 ill women being completely IGNORED and millions more with other diseases being mostly ignored.

    That ought to get somebody - some female politician who knows what discrimination is like - to try and take some real action.

    I think the female tie-in is RICH with possibilities.
  11. Marco

    Marco Old blackguard

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    I'm glad you agree with the potential here Cort.

    Much as I feel personally uncomfortable with the portrayal of ME/CFS as a womens' disease, that's the card we've been dealt and it does give us an 'in' to a much larger and more organised lobby.

    I'm pretty sure psephologists and party managers spend little time analysing the voting intentions of people with neuro-immune diseases - but the female vote? - another matter entirely.
  12. Sing

    Sing Senior Member

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    Dear Marco,

    I think that is an excellent, powerful, clear notice and open request for funding, support and awareness. I wonder if PANDORA would have ideas about how to get that out--and fill in the blanks. They seem like a strong, politically oriented advocacy group to me. Their address is www.pandoranet.info

    Sing
  13. Wayne

    Wayne Senior Member

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    Just have to whole-heartedly agree about Berthe's lovely smile. :Retro smile:

    Wayne
  14. Wayne

    Wayne Senior Member

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    Thanks Sing for posting a link to PANDORA. I've not even known what PANDORA was until I clicked on your link, and went to take a quick look. It's so easy to stay clueless about things. I feel a little less clueless now, thank you very much! :Retro smile:

    Wayne
  15. Enid

    Enid Senior Member

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    Hopefully very soon we will turn the world upside down - and the catalogue of doubters (as Spike Milligan said "I told you I was ill " )

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