1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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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: Ending Neglect at the NIH: The Campaign to End Chronic Pain in Women Gets It's Chance

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Feb 9, 2012.

  1. Phoenix Rising Team

    Phoenix Rising Team

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  2. Nielk

    Nielk

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    Thanks Cort for this important information. Why am I not surprised that my state of NY has no representation?
  3. Cort

    Cort Phoenix Rising Founder

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    Hah! No New York there--too bad, no Nevada either - so I'm out too.

    I love what this Campaign has done - they got the NIH to commission a huge document (too big for me to download apparentl) that says chronic pain in women is a serious and neglected issue. Given that pain in women often goes along with fatigue - and CFS is a part of the campaign - I think if they can get some action - we'll definitely get some action. This may be our best chance to get an increase in funding now that funding for XMRV has dried up.

    At the very least the NIH should be promoting and assisting collaborative studies including ME/CFS and patients who have these other disorders. That in itself would increase our research budget and help findings from ME/CFS researchers (I don't think anyone in these other disorders is looking a herpesviruses or doing the work the Lights are doing) inform these other disorders.

    Nice artwork by the way - love the new avatar...:D
    Ocean and Nielk like this.
  4. CBS

    CBS Senior Member

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    Including ME/CFS in the Campaign to End Women's Chronic Pain makes no more sense to me. The NIH is going down the wrong road and pointing to this evidence that at least aren't completely ignoring ME/CFS. Two thirds of MS patients are women and MS causes pain and fatigue. Why not include MS in this effort?

    This ought to make anyone (female or male) with ME furious. This just adds weight to the argument that lumping ME and CFS together is dangerous.

    Hey NIH, NOT IMPRESSED!
  5. Sing

    Sing Senior Member

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    A copy editing comment: The sample letter states "116 adult Americans suffers from chronic pain..." What do you mean to say, 1 in 16 Americans? I am only guessing. Thank you for correcting this as I want to send a letter.

    Sing
  6. Sing

    Sing Senior Member

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    I just sent the following to my Senator:

    I am writing to thank you as a member of the HELP Committee for passing a bipartisan amendment calling upon the Institute of Medicine (IOM) to study our nations epidemic of chronic pain, and to urge you to attend the HELP Committee Hearing, Pain in America: Exploring Challenges to Relief, on Tuesday, February 14, 2012.

    According to the June 2011 IOM study, the estimate of the annual cost of chronic pain in America is $635 billion. I am one of these sufferers. Since 1995, I have had ME/CFS (formerly named Chronic Fatigue Syndrome), a serious neuro-immune condition which is so far incurable. Pain is one of its most common features. My life is organized around pain management, and I fear that as this worsens, I will not get the medical help I need.

    Doctors now are so focussed on not contributing to drug addiction, especially for recreational users, that they often fail to provide adequate help for those who have a real physical basis of pain and need for relief. No one should have a life which revolves totally around pain!

    I hope it will be possible for the government to back some targeted research to improve this key area of health care.

    Thank you!
  7. Cort

    Cort Phoenix Rising Founder

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    Well maybe you know what ME is but I don't and so long as evidence points to something being a co-morbid condition with ME/CFS then I hope they try to figure out why. It may very well be that certain subset of people with ME/CFS have something in come with IC or FM or other conditions while others don't - I expect that's true - but that will take research to figure out.

    For me I see the Lights emphasis on dorsal root ganglia activation and possible infection fitting in really well with IC/FM and other conditions. I think they should look at MS as well....

  8. Cort

    Cort Phoenix Rising Founder

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    Hopefully the NIH will fund research into more auto-immune disorders; when I looked into it (http://phoenixrising.me/archives/6190?ref=nf) there appears to be really large overlap between their characteristics and ME/CFS including a big gender imbalance :cool:, questions about infectious origin :eek: and sometimes a stress (could be an infection) trigger :D

    I would be more excited about that research, for sure.
  9. Snow Leopard

    Snow Leopard Senior Member

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    The problem in the case of auto-immune disorders is they tend to neglect the pain/fatigue side. Fatigue associated with MS, post-cancer etc is 'medically unexplained' too but no one likes bundling it in the CFS group for some reason?
  10. Ember

    Ember Senior Member

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    "Those who cannot remember the past are condemned to repeat it." Could this caution be applied here? We didn't like having our disease characterized as chronic fatigue. Will we like chronic pain any better?
  11. Snow Leopard

    Snow Leopard Senior Member

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    Excellent point...
  12. Nielk

    Nielk

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    Thanks Cort for noticing. Yes, it'm my latest painting:)
  13. Nielk

    Nielk

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    Yes, but if we are being hit by a wall as far as funding for studies to help us, I am willing to get this funding under any umbrella or name.
    Why, when we are so financially neglected can we not accept funding under the umbrella name of women's pain studies? It's not like they are all f a sudden change our name to chronic pain disorder. Untill we get proper funding under a desired name whether CFS, ME or ME/CFS, my opinion is that we should take whatever we can get,
  14. Cort

    Cort Phoenix Rising Founder

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    We'll see. I agree that having this disorder characterized as a chronic pain disorder seems a bit off - on the other hand, having it bundled with these other disorders does give it access to research insights and researchers associated with them - which should help increase our funding AND it does give those disorders access to our research. I have read that FM, for instance, is often triggered by an infection..but very little research has been done in this area. That is being done in ME/CFS and insights from that could inform other disorders.

    Look at overlap between interstitial cystitus and CFS

    http://kidney.niddk.nih.gov/kudiseases/pubs/interstitialcystitis/
  15. Cort

    Cort Phoenix Rising Founder

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    Thanks Sing!


  16. Cort

    Cort Phoenix Rising Founder

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    And boy may we be getting hit by a wall....Check out this - 30% of CFS studies the NIH is funding are ending this year and since the 2006 RFA the NIH has funded only a few new researchers - most of the research they are now funding came, directly or indirectly, out of that grant package 6 years ago....Without another grant package to bring new researchers in - NIH funding for ME/CFS may very well tumble and keep tumbling the longer they delay providing cfs with a grant package

    http://forums.phoenixrising.me/content.php?533-The-NIH-on-ME-CFS-in-2012-Pt-III-Neglect-Imperils-ME-CFS-Research
  17. CBS

    CBS Senior Member

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    'CFS' is an amalgamation of chronic fatigue from stress or MDD thrown in with a group of early stage ME patients who, to date, lack concrete physiological findings and are consoling themselves with the delusion that CFS is a life sentence and not a death sentence. ME is an immunologically based infectious disorder with significant neurological components that is trying to kill you on a daily basis.

    As for the NIH, is this really the best they can do following the so called State of the Knowledge conference. It is all they want to do. The conference was a sham and if we can't/won't see that we're all delusional and we're never getting out of this hole. CFS thrown in with TMD, Endometriosus, and Vulvodynia. How many of those result in life threatening arrhythmias. What a joke!

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