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Article: Ending Neglect at the NIH: The Campaign to End Chronic Pain in Women Gets It's Chance

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
 
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!
 
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
 
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!
 
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!

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....

J Urol. 2010 Oct;184(4):1358-63. Epub 2010 Aug 17.
Interstitial cystitis/painful bladder syndrome and associated medical conditions with an emphasis on irritable bowel syndrome, fibromyalgia and chronic fatigue syndrome.

Nickel JC, Tripp DA, Pontari M, Moldwin R, Mayer R, Carr LK, Doggweiler R, Yang CC, Mishra N, Nordling J.
Source
Department of Urology, Queen's University, Kingston General Hospital, Kingston, Ontario, Canada. jcn@queensu.ca
Abstract

PURPOSE:
We characterized and compared the impact of clinical phenotypic associations between interstitial cystitis/painful bladder syndrome and controls in relation to potentially related conditions, particularly irritable bowel syndrome, fibromyalgia and chronic fatigue syndrome.

MATERIALS AND METHODS:
Female patients with interstitial cystitis/painful bladder syndrome and controls with no interstitial cystitis/painful bladder syndrome completed a biopsychosocial phenotyping questionnaire battery which included demographics/history form, self-reported history of associated conditions, and 10 validated questionnaires focused on symptoms, suffering/coping and behavioral/social factors.

RESULTS:
Questionnaires were completed by 205 patients with interstitial cystitis/painful bladder syndrome and 117 controls matched for age. Prevalence of self-reported associated condition diagnosis in interstitial cystitis/painful bladder syndrome vs controls was irritable bowel syndrome 38.6% vs 5.2%, fibromyalgia 17.7% vs 2.6% and chronic fatigue syndrome 9.5% vs 1.7% (all p <0.001). In the interstitial cystitis/painful bladder syndrome cohort 50.3% reported no other associated condition, 24.4% had interstitial cystitis/painful bladder syndrome + irritable bowel syndrome only, 2.5% had interstitial cystitis/painful bladder syndrome + fibromyalgia only, 1.5% had interstitial cystitis/painful bladder syndrome + chronic fatigue syndrome only, while 20.2% had multiple associated conditions. As the number of associated conditions increased (ie localized, regional, systemic), pain, stress, depression and sleep disturbance increased while social support, sexual functioning and quality of life deteriorated. Anxiety and catastrophizing remained increased in all groups. Symptom duration was associated with this apparent phenotypic progression.

CONCLUSIONS:
Irritable bowel syndrome, fibromyalgia and chronic fatigue syndrome are more prevalent in patients with interstitial cystitis/painful bladder syndrome than in asymptomatic control subjects, and result in significant impact. There are at least 3 distinct clinical phenotypes based on identification of overlapping syndrome patterns. A suggestion that remains to be proven with longitudinal studies is that there may be progression over time from an organ centric to a regional and finally to a systemic pain syndrome with progression of symptom severity, and deterioration of cognitive and psychosocial parameters.
 
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!

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.
 
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?
 
"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?
 
Excellent point...

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,
 
"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?

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

The cause of IC is unknown. Although its symptoms resemble a bladder infection, IC does not appear to be caused by bacteria. One theory proposes that IC is caused by an infectious agent that simply hasn't been detected yet. A different theory holds that IC is an autoimmune reaction; still another, that it is related to allergies. Because it varies so much in symptoms and severity, IC may be not one disease but several.
Many women with IC/PBS have other conditions such as irritable bowel syndrome and fibromyalgia. Scientists believe IC/PBS may be a bladder manifestation of a more general condition that causes inflammation in various organs and parts of the body.

http://kidney.niddk.nih.gov/kudiseases/pubs/interstitialcystitis/
 
Thanks Sing!


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!
 
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,

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
 
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....

'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!