Anyone using prescribed opioids for chronic pain needs to be aware of the slam chronic pain sufferers are bearing. Most posts are from healthy people blaming pain patients for addiction and death of illegal users. I'm posting the regulations.gov link. And my letter to CDC.
Please use my letter or your own thoughts to the discussion. You can post without using your name.
http://www.regulations.gov/#!documentDetail;D=CDC-2015-0112-0001
Letter:
Really, we give up our HIPPA Rights to right a wrong that is causing immense suffering among patients with chronic pain? That's a very high cost to ask chronic pain patients to pay. How many of you, anonymous judges, would be willing to give up your privacy, rights and medical records? Think this governmental gesture to comment is getting too few responses? Just look at the target you've made of us who do respond.
Yes, opioids work for chronic pain.
1) There is no FDA approved medications that diminishes our pain more effectively. Thousands of us have taken dozens of other medicines, alternative therapies, integrated therapies all touted to work for some patients BUT they cause us more pain plus horrible side effects.
Please educate physicians who urgently need information about chronic pain.
2) We'd love to throw all away our medications, that won't happen until GOVERNMENT FUNDING supports large trial research studies to cure, or safely lessen chronic pain. In 2016, find what infections, gene mutations, immune system imbalances, spinal fluid, hypothalamus and other orchestrators of nerves and cells are dysfunctional in people with chronic pain and fund the best researchers to provide answers and solutions.
When research DOES discover more effective medications or devices, please let us be able to afford them, even if we are on Medicare or Medicaid. Most of us have paid SSI our entire careers and never thought we or our children would have to draw from it before age 65.
What's more, recognize that we have injuries that can't be reversed that cause chronic pain.
Don't waste anyone's tax money on research purporting exercise is the cure-all: it is NOT. It is cruel and unsafe -- it throws our compromised bodies into post-exercise pain for days, weeks.
3) We're made to feel like criminals in doctor's offices and pharmacies when walking and traveling are often painful obstacles, we jump through the hoops. Do not further diminish us.
Also, the vast majority of us DO NOT SELL or abuse our medications in any way.
Society's problem with illegal drug abusers are not our fault. We are not to blame.
4) We are not lazy, addicted, enabled, uneducated: we have pain every day of our lives and yet we live and persevere and hope for cures. We are among the most optimistic people on the planet because we keep going.
5) We want to be well or, at least 50% healthier, 50% as well as normal people our age -- imagine our futures without the ability to socialize, have an income, all with years of pain. Think it's a burden on the nation? Be assured our personal financial burdens are much heavier.
Our pain has made us vulnerable. Our government should not sicken us or villainize us further.
Please use my letter or your own thoughts to the discussion. You can post without using your name.
http://www.regulations.gov/#!documentDetail;D=CDC-2015-0112-0001
Letter:
Really, we give up our HIPPA Rights to right a wrong that is causing immense suffering among patients with chronic pain? That's a very high cost to ask chronic pain patients to pay. How many of you, anonymous judges, would be willing to give up your privacy, rights and medical records? Think this governmental gesture to comment is getting too few responses? Just look at the target you've made of us who do respond.
Yes, opioids work for chronic pain.
1) There is no FDA approved medications that diminishes our pain more effectively. Thousands of us have taken dozens of other medicines, alternative therapies, integrated therapies all touted to work for some patients BUT they cause us more pain plus horrible side effects.
Please educate physicians who urgently need information about chronic pain.
2) We'd love to throw all away our medications, that won't happen until GOVERNMENT FUNDING supports large trial research studies to cure, or safely lessen chronic pain. In 2016, find what infections, gene mutations, immune system imbalances, spinal fluid, hypothalamus and other orchestrators of nerves and cells are dysfunctional in people with chronic pain and fund the best researchers to provide answers and solutions.
When research DOES discover more effective medications or devices, please let us be able to afford them, even if we are on Medicare or Medicaid. Most of us have paid SSI our entire careers and never thought we or our children would have to draw from it before age 65.
What's more, recognize that we have injuries that can't be reversed that cause chronic pain.
Don't waste anyone's tax money on research purporting exercise is the cure-all: it is NOT. It is cruel and unsafe -- it throws our compromised bodies into post-exercise pain for days, weeks.
3) We're made to feel like criminals in doctor's offices and pharmacies when walking and traveling are often painful obstacles, we jump through the hoops. Do not further diminish us.
Also, the vast majority of us DO NOT SELL or abuse our medications in any way.
Society's problem with illegal drug abusers are not our fault. We are not to blame.
4) We are not lazy, addicted, enabled, uneducated: we have pain every day of our lives and yet we live and persevere and hope for cures. We are among the most optimistic people on the planet because we keep going.
5) We want to be well or, at least 50% healthier, 50% as well as normal people our age -- imagine our futures without the ability to socialize, have an income, all with years of pain. Think it's a burden on the nation? Be assured our personal financial burdens are much heavier.
Our pain has made us vulnerable. Our government should not sicken us or villainize us further.
![ME/CFS lecture | Dr Nancy Klimas | 2011 [Chronic Fatigue Syndrome / SEID / New Zealand] - YouTube](data:image/gif;base64,R0lGODlhAQABAIAAAAAAAP///yH5BAEAAAAALAAAAAABAAEAAAIBRAA7)
