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CRPS Awareness Month – November 2021

123 BEST Crps IMAGES, STOCK PHOTOS & VECTORS | Adobe Stock

It’s CRPS Awareness Month!
 CRPS awareness month 2021 has finally started!
 Throughout November we will be sharing facts and information about CRPS across our social media channels, we also have our 7th annual national CRPS Conference on 21 November and don’t forget our Silent Auction in aid of Burning Nights CRPS Support.
What’s Going On in November?
Beril, are you a Formula 1 Racing fan?Fancy owning a framed signed cap by F1 2021 McLaren Team drivers Lando Norris and Daniel Ricciardo? Now’s your chance!

The signed cap has been expertly framed together with the images of both the drivers that were sent to us by McLaren Racing.

Between 1st to 20th November Burning Nights CRPS Support is holding an online silent charity auction where you can bid for this amazing prize. There is a reserve of £300.

All you have to do is to email your bid and your full contact details to fundraise@burningnightscrps.org

We will announce the highest bidder during our conference, it will be posted online, on our website & the winner will be contacted direct.

So what are you waiting for? Get bidding!Make A bid 
7th Annual National CRPS ConferenceBeril, only a couple of weeks to go before our 7th annual CRPS conference on Sunday 21 November!

Our full 1 day annual CRPS conference will be a physical event & will be at DoubleTree Hilton Chester, United Kingdom. This is a FREE event and as usual we will have some fantastic speakers all who have working knowledge of Complex Regional Pain Syndrome.

Our annual conference is for CRPS patients, their families & caregivers as well as healthcare professionals & students and lawyers who have an interest in CRPS. There’ll be breaks throughout the day when you can chat with others attending the conference. Lunch & refreshments are provided free of charge during the conference.

Register now for your free ticket! There’s also a chance on the day to purchase any of our CRPS products including Christmas cards as well!

For those unable to attend the conference in person we are going to live streaming it on Zoom. If you are interested in the live stream option, please email us at support@burningnightscrps.org with your full contact details including full name, email and country you live in.Sign up for your FREE ticket
Our 2021 CRPS Conference SpeakersMr Philip Cutts an Orthopaedic and Musculoskeletal Rehabilitation and Pain Management Specialist from Philip Cutts MSK talking about ‘Physiotherapy for CRPS’   Chris Edwards from Lewis Reed holding a Q & A on ‘Driving with a Disability’Mr Mohammed Akbar Hussain, Consultant Neurosurgeon talking on ‘Neuromodulation as a treatment option for CRPS’   Miriam Parkinson an Advanced Occupational Therapist is going to presenting on ‘Managing Your CRPS Flare-Ups’   Pankaj Madan – a Barrister who regularly deals with CRPS claims from Exchange Chambers talking about the Barrister’s Role in CRPS Legal ClaimsPCCA Ltd who are going to give us a very interesting talk on ‘An Introduction Personalised Medicines including for CRPS’   Ashleigh Stevens – a CRPS patient – sharing her lived experience of CRPS   Register for your ticket
Check Out Some Of Our Blog ArticlesHow To Get A Better Sleep With CRPS & Chronic Pain

Sleep can be extremely difficult when you live with CRPS or chronic pain. Check out our top tips for getting a better night’s sleep
Learn More  ›18 Tips Preparing For Your Pain Appointment

Attending a pain management appointment can be a daunting experience. Our 18 tips are to help you prepare for your appointment.
Find Out More  ›
Our Upcoming EventsCRPS Awareness Month

CRPS Awareness Month lasts the whole of November – if you’re interested in fundraising for Burning Nights CRPS Support please contact us & don’t forget to donate your money!
Find Out  ›Online CRPS Support Group

Join us for our monthly online CRPS Support group for CRPS patients on Wednesday 10 November at 2pm GMT. You’re not alone in this journey.

Sign Up  ›Young Person’s Support Group

Under 18 & have CRPS? Join our online Young Person’s support group on 18 November at 4.30pm GMT

Register Today  ›Loved Ones & Caregivers Support Group

Are you a partner, parent or caregiver of a CRPS patient? Join our online support group on 16 November at 7pm GMT.
Sign Up Today  ›
Our Online ShopWinter Woodland Christmas Cards

This pack of 10 Christmas cards features a beautiful Winter Woodland scene will be loved by many but especially perfect for your nature loving friends & family
Buy Yours Now  ›Festive Red Bus Christmas Cards

This lovely pack of 10 cards with envelopes features a beautifully illustrated festive big red London Bus with the number 25 on the front as well as the charity name
Get Your Pack Today  ›Zipped Hoodie

Help spread awareness of CRPS with our Zipped Hoodie! The inside of the zipped hoodie is soft, making it a comfortable wear. Sizes Small to XXL. Colour Black with orange zip & toggles.
Buy Yours Now  ›CRPS Awareness Face Mask

Our reusable face masks a soft double layered polyester material and have black elastic straps for around the ears.
Take a Look  ›
FundraisingCRPS Awareness Charity Fundraiser

Maria Ayala from USA has set up a fundraiser for CRPS awareness and Burning Nights CRPS Support to run during November.
November is the perfect time not only to fundraise but to also raise awareness of Complex Regional Pain Syndrome. Help us to help all those in need of our support.
Make A Donation  ›Corben Takes on Rock n Roll Liverpool Marathon

Corben Roberts made the decision to raise money for the UK’s best known CRPS charity & took on the Liverpool marathon (all 26 miles!). His wife Amy, has lived with CRPS since 2019 & is the primary reason for his fundraising efforts for the charity. Learn more about Corben or donate below

Donate Today  ›
Thank You To Our Recent FundraisersOn behalf of all the people we support, we say a huge THANK YOU to our recent fundraisers! Most of the fundraisers below are still open to receive donations, please do consider donating if you can, as every penny and pound raised is important.

Fundraisers including:Daisy Roberts – who took on Lands End to John O’Groats cycle after learning to ride in just 1 month! Daisy raised just under £3,000 including matched funding from Abbott MedicalBen Ashworth – who bravely completed the Virtual London Marathon in October. Ben so far has raised £1,106.Corben Roberts – as mentioned earlier, Corben completed the Rock n Roll Liverpool Marathon & has raised £1,100 so farDan Ward – completed the gruelling Three Peaks challenge on crutches after having an accident in 2019 and developing CRPS. So far Dan has smashed his target and raised £2,660. Will you help him to reach £3,000?Lisa Jennings – completed a Triathlon after taking the summer to learn to swim with her knee injury. Lisa has so far raised £1,364.Elizabeth Marshall – has a number of ongoing events over several months. Please do donate if you can.Mark McKee (aka Sodden Gecko) – has been gaming live throughout 2021 and has raised £371 so far. We’re sure Mark has more gaming nights to go before the end of the year!
Interested in Fundraising for Burning Nights CRPS?There are many ways you can fundraise for Burning Nights CRPS Support. Not sure why you should? Here’s what Corben had to say:

”I don’t think it matters how much you raise. I feel more committed, and that I need to share our story and tell people what is happening. For me and Amy, the awareness is really important.”

Find out more about fundraising for Burning Nights CRPS Support by clicking the button below.Get InvolvedFunds from Home Collection BoxesBeril, have you ordered one of our home collection boxes? If so don’t forget to donate your saved funds when your box is full! CRPS awareness month is the perfect time to donate that loose change you’ve been saving in the collection box!

There are a number of ways you can donate your saved change including:By bank transfer direct to our charity’s bank accountUsing our one-off donation form on our websiteBy PayPalBy cheque and post it to usSee the ways you can donate that saved up loose change on our website by clicking the button below, or contact us for our banking information. We will soon be in touch with all those who have ordered our boxes.

Don’t forget that if you are a U.K. tax payer you can also include Gift Aid if you’re eligible, as we can claim an extra 25% on top of your donation through the UK Government.Ways to Donate Your ChangeWe Support Anyone Affected By CRPSWithout the support of people like you Beril, Burning Nights CRPS Support couldn’t continue offering the services we do.Every week approximately 288 people in the UK are diagnosed with Complex Regional Pain Syndrome.

We want to give people with CRPS and their families and loved ones the knowledge they need to understand their condition and to offer a range of support services such as monthly online support groups, befriending scheme, counselling service and live chat, to name just a few. 

If you find our information or our services useful, please consider making a small donation today or fundraising for us.Donate NowPS. Don’t forget to get your conference ticket today!Register Today
Donate to help us raise awareness of CRPS
Featured

Slideshow: Physical Symptoms of Depression – WebMD

https://www.webmd.com/depression/ss/slideshow-physical-symptoms-depression?ecd=wnl_emw_101321&ctr=wnl-emw-101321_lead_cta&mb=X9BGobA7BYgwk8%2FQ26MRUWdEpmNqbUHL5ZWpoSEk9GU%3D

Slideshow: Physical Symptoms of Depression

Medically Reviewed by Smitha Bhandari, MD on September 11, 2019

Sleep Problems

1/12

Depression can affect your body as well as your mind. Trouble falling or staying asleep is common in people who are depressed. But some may find that they get too much shut-eye.

Chest Pain

2/12

It can be a sign of heart, lung, or stomach problems, so see your doctor to rule out those causes. Sometimes, though, it’s a symptom of depression.

Depression can also raise your risk of heart disease. Plus, people who’ve had heart attacks are more likely to be depressed.

Fatigue and Exhaustion

3/12

If you feel so tired that you don’t have energy for everyday tasks — even when you sleep or rest a lot — it may be a sign that you’re depressed. Depression and fatigue together tend to make both conditions seem worse.

Aching Muscles and Joints

4/12

When you live with ongoing pain it can raise your risk of depression.

Depression may also lead to pain because the two conditions share chemical messengers in the brain. People who are depressed are three times as likely to get regular pain.

Digestive Problems

5/12

Our brains and digestive systems are strongly connected, which is why many of us get stomachaches or nausea when we’re stressed or worried.

Depression can get you in your gut too — causing nausea, indigestion, diarrhea, or constipation.

Headaches

6/12

One study shows that people with major depression are three times more likely to have migraines, and people with migraines are five times more likely to get depressed.

Changes in Appetite or Weight

7/12

Some people feel less hungry when they get depressed. Others can’t stop eating. The result can be weight gain or loss, along with lack of energy.

Depression has been linked to eating disorders like bulimia, anorexia, or binge eating.

Back Pain

8/12

When it hurts you there on a regular basis, it may contribute to depression. And people who are depressed may be four times more likely to get intense, disabling neck or back pain.

Agitated and Restless

9/12

Sleep problems or other depression symptoms can make you feel this way. Men are more likely than women to be irritable when they’re depressed.

Sexual Problems

10/12

If you’re depressed, you might lose your interest in sex. Some prescription drugs that treat depression can also take away your drive and affect performance. Talk to your doctor about your medicine options.

Exercise

11/12

Research suggests that if you do it regularly, it releases chemicals in your brain that make you feel good, improve your mood, and reduce your sensitivity to pain.

Although physical activity alone won’t cure depression, it can help ease it over the long term.

If you’re depressed, it can sometimes be hard to get the energy to exercise. But try to remember that it can ease fatigue and help you sleep better.

UP NEXT

Sneaky Depression Triggers as You Age

birthday cake with candles that say 401 / 12Sources

This tool does not provide medical advice. See additional information.

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Tell Congress What You Think About the Updated Draft CDC Opioid Prescribing Guideline – US Pain Foundation

https://uspainfoundation.org/news/tell-congress-what-you-think-about-the-updated-draft-cdc-opioid-prescribing-guideline/

Tell Congress What You Think About the Updated Draft CDC Opioid Prescribing Guideline

by US Pain Foundation | Aug 3, 2021 | News

Submit your message to Congress by clicking the button below.

Note: Click here to submit your statement to your Congressional Representative.

On Friday, July 16, the National Center for Injury Prevention and Control (NCIPC)’s Board of Scientific Counselors (BSC) met to review a report on the new draft Guideline provided by the Opioid Working Group (OWG), a Centers for Disease Control and Prevention (CDC)-appointed outside group of stakeholders whose job was to review the new Guideline. 

The new Guideline was authored by some of the same individuals involved in the drafting of the 2016 Guideline. Four out of the five authors are employees of the NCIPC who are injury prevention and addiction specialists, not pain management professionals, nor pain advocates, or pain patients. The fifth, a primary care physician, has for years publicly criticized opioid prescribing for pain in op-eds and interviews. Yet, pain patients and pain management providers will be the groups most affected by the new Guideline which describes how and when to prescribe opioid medication for pain.

The new draft Guideline came after the CDC held interviews with 100 stakeholders to get their views of how the 12 recommendations should be updated. It came after public listening sessions in which dozens of pain patients spoke about how they had been harmed by the 2016 Guideline. It came after FDA issued a report on a public meeting with 450 chronic pain patient-participants as well as a public docket that received 2450 comments held in July of 2018 in the aftermath of the release of the Guideline, in which patients uniformly described the burden of trying to access opioid medication that had long helped them detailing reduced dosing, forced tapering, medical abandonment, increased pain, withdrawal, disability, isolation, inability to work, inability to care for self or others, stigma and discrimination, anxiety and depression, self-harm and suicide as a result of loss of or reduced access to opioids.

It came after the Congressionally-mandated Pain Management Best Practices Inter-Agency Task Force (PMTF), of which the CDC was a member, heard public comment, patient testimonials and received over 9,000 e-mails and letters, 87% of which described loss of access to opioid pain medications that had caused all of the same harms described by the FDA report. And finally, it came after a review of the 2016 CDC Guideline conducted by the PMTF at the request of Congress, which pointed out a number of flaws in the Guideline, chief among them the arbitrary nature of the 90 MME/day maximum dose recommendation and the “3-days or less” and “more than 7 days will rarely be needed” duration of therapy limit following an acute, severely painful event. The PMTF review stressed the wide variability in patient, specific drug and disease or injury characteristics that determine the optimal dose for pain relief in each individual patient.

So, it is especially astounding that the Guideline authors made no significant changes in the Updated Guideline. (Click here to see a comparison of the 2016 vs the 2021 Guideline) The problematic and unscientific dose limits and duration of therapy recommendations are exactly the same as in the 2016 Guideline. 

Even more astounding is the focus on reducing and eliminating the legitimate use of opioids for pain management while remaining silent on what patients living in high-impact, relentless severe pain should do for pain management beyond recommending “non-opioid therapies.”

The authors have long said the Guideline is intended for primary care physicians. This is exactly the group who have very little knowledge of current best practices in pain management and are generally not aware of the multitude of therapies including other medications, restorative therapies, interventional procedures, medical devices, behavioral approaches, and complementary therapies that could help patients manage their pain in addition to or in place of opioids. Furthermore, there are many pain patients whose pain is not helped by opioids, or cannot take them for one reason or another, who may be helped by therapies in the categories listed above. 

By not discussing these options in the Guideline, the CDC has missed an important opportunity to educate physicians, patients and other healthcare providers about how best to manage pain. Unfortunately, there are barriers to accessing some of these alternate therapies such as lack of insurer coverage and cost. The CDC’s highlighting of these options could help to remove some of these barriers but not if they are not even discussed in the Guideline.

In addition to public comments during the meeting, the CDC announced that they would accept written comments until July 23 that would be included as part of the meeting minutes. (Click here to see U.S. Pain Foundation’s written comments on the Updated Guideline.) U.S. Pain Foundation sent an alert last week notifying advocates of the opportunity to comment.

The CDC’s process going forward to arrive at a Final Guideline will be for the BSC to consider the OWG’s report and advise the CDC on the update. (Click here to see the OWG Report.) The CDC’s NCIPC authors will revise the Updated Guideline and post a new Draft Guideline for a 60-day public comment by the end of 2021. The CDC will then revise the Draft Guideline and release an official Final Guideline in late 2022.

What you can do

If you and your healthcare have been impacted by the CDC Guideline, then we urge you to write your Congressional Senators and House Representative. 

Tell them your personal story in as concise a manner as possible. Explain how your pain care has been affected by the Guideline. Urge them to tell the CDC to add pain management healthcare providers, pain patients and pain advocates to the group authoring the new Guideline. Request that your representatives tell the CDC not to include daily dose and duration limits on opioid prescriptions for legitimate pain patients who use opioids appropriately to manage their daily chronic pain. 

Dose and duration of treatment is not one size fits all. Many respected medical authorities, including the AMA, the FDA and the HHS Pain Management Best Practices Inter-Agency Task Force, have said there is wide variation in dose and duration of opioid therapy that is optimal for each individual patient.

Click the button below to visit our online Advocacy Center and compose your email which will automatically be sent to your Congressional representatives.Send Your Message

FDA Authorizes Marketing of Virtual Reality System for Chronic Pain Reduction – FDA.gov

https://www.fda.gov/news-events/press-announcements/fda-authorizes-marketing-virtual-reality-system-chronic-pain-reduction

FDA NEWS RELEASE

FDA Authorizes Marketing of Virtual Reality System for Chronic Pain Reduction

 For Immediate Release:November 16, 2021

Español

The U.S. Food and Drug Administration today authorized marketing of EaseVRx, a prescription-use immersive virtual reality (VR) system that uses cognitive behavioral therapy and other behavioral methods to help with pain reduction in patients 18 years of age and older with diagnosed chronic lower back pain.

“Millions of adults in the United States are living with chronic lower back pain that can affect multiple aspects of their daily life,” said Christopher M. Loftus, M.D., acting director of the Office of Neurological and Physical Medicine Devices in the FDA’s Center for Devices and Radiological Health. “Pain reduction is a crucial component of living with chronic lower back pain. Today’s authorization offers a treatment option for pain reduction that does not include opioid pain medications when used alongside other treatment methods for chronic lower back pain.”

Chronic lower back pain, which is defined as moderate to severe pain in the lower back lasting longer than three months, is one of the most common chronic pain conditions in the U.S. Chronic pain may inhibit mobility or daily activities and has been linked to anxiety and depression, poor perceived health or reduced quality of life and dependence on opioids. Current treatment plans for chronic lower back pain often include, among other options, prescription and over-the-counter pain medications, exercise, steroid injections, surgery and transcutaneous electrical nerve stimulation. Cognitive behavioral therapy (CBT) may be used to reduce the burden of chronic pain and increase function through an emotional, cognitive and behavioral approach to shift negative beliefs held by patients about the relationship between their pain and movement.

EaseVRx employs the principles of CBT and other behavioral therapy techniques for the purpose of reduction of pain and pain interference. The prescription device, which is intended for at-home self-use, consists of a VR headset and a controller, along with a “Breathing Amplifier” attached to the headset that directs a patient’s breath toward the headset’s microphone for use in deep breathing exercises. The device’s VR program uses established principles of behavioral therapy intended to address the physiological symptoms of pain and aid in pain relief through a skills-based treatment program. These principles include deep relaxation, attention-shifting, interoceptive awareness–the ability to identify, access, understand and respond appropriately to the patterns of internal signals—and perspective-taking, distraction, immersive enjoyment, self-compassion, healthy movement, acceptance, visualization, knowledge of pain and rehabilitation.

The EaseVRx treatment program consists of 56 VR sessions that are 2-16 minutes in length, which are intended to be used as part of a daily eight-week treatment program. Each session incorporates elements of the aforementioned principles to provide the user with skills to achieve relief and reduction in the interference of pain in daily activities.

The FDA evaluated the safety and effectiveness of EaseVRx in a randomized, double-blinded clinical study of 179 participants with chronic lower back pain who were assigned to one of two eight-week VR programs: the EaseVRx immersive 3-D program or a control 2-D program that did not utilize skills-based CBT methods of treatment. After enrollment in the trial, participants were followed for a period of 8.5 months total, including a two-week baseline assessment period, an eight-week VR program, a post-treatment assessment, and follow-up at one, two, three, and six months after completion of the program.

At the end of treatment, 66% of EaseVRx participants reported a greater than 30% reduction in pain, compared to 41% of control participants who reported a greater than 30% reduction in pain. Furthermore, 46% of EaseVRx participants reported a greater than 50% reduction in pain compared to 26% of control participants. At one-month follow-up, all participants in the EaseVRx group continued to report a 30% reduction in pain and at the two- and three-month follow-up marks, the 30% reduction in pain remained for all outcomes with the exception of pain intensity. In contrast, the control group reported a reduction in pain below 30% at one-, two-, and three-month follow-up for all outcomes.

To evaluate the effectiveness of EaseVRx, at the end of the eight-week program, participants were asked to rate the following outcomes on a 10-point scale, with 10 being the greatest value: pain intensity, pain interference on activity, pain interference on mood, pain interference on sleep and pain interference on stress. On average, participants experienced a decrease in pain intensity of 1.31 points over the eight weeks of treatment. Participants also reported a decrease in pain interference for all measured outcomes that ranged from .95 points to 1.27 points down from their respective scores at the start of treatment.

No serious adverse events were observed or reported during the study. Approximately 20.8% of participants reported discomfort with the headset and 9.7% reported motion sickness and nausea.

EaseVRx was granted Breakthrough Device designation. To qualify for such designation, a device must be intended to treat or diagnose a life-threatening or irreversibly debilitating disease or condition and meet one of the following criteria: the device must represent a breakthrough technology; there must be no approved or cleared alternatives; the device must offer significant advantages over existing approved or cleared alternatives; or the availability of the device is in the best interest of patients.

The FDA reviewed EaseVRx through the De Novo premarket review pathway, a regulatory pathway for low-to moderate-risk devices of a new type. Along with this authorization, the FDA is establishing special controls for devices of this type, including requirements related to labeling and performance testing. When met, the special controls, along with general controls, provide reasonable assurance of safety and effectiveness for devices of this type. This action creates a new regulatory classification, which means that subsequent devices of the same type with the same intended use may go through the FDA’s 510(k) premarket process, whereby devices can obtain marketing authorization by demonstrating substantial equivalence to a predicate device.

EaseVRx is manufactured by AppliedVR.

###

The FDA, an agency within the U.S. Department of Health and Human Services, protects the public health by assuring the safety, effectiveness, and security of human and veterinary drugs, vaccines and other biological products for human use, and medical devices. The agency also is responsible for the safety and security of our nation’s food supply, cosmetics, dietary supplements, products that give off electronic radiation, and for regulating tobacco products.


Inquiries

Media: Abby Capobianco 240-461-9059Consumer: 888-INFO-FDA

Current Clinical Trials at Cedars – Sinai – Virtual Medicine.org

https://virtualmedicine.org/research/current

Our Current Trials

  • Virtual Reality for GI Cancer Pain Reduction Study
  • We are studying how pain affects quality of life. We will be working to determine if digital, virtual reality (VR) technologies can help improve daily function and reduce pain in people with GI cancers.Read More Am I Eligible?
  • VR for Chronic Lower Back Pain Reduction Study
  • We are studying how pain affects quality of life and working closely with people who have chronic lower back pain to determine if digital technologies can help improve daily function and reduce pain.Read More  Am I Eligible?
  • Digital Technology for Pain in Rural America We are studying how pain affects quality of life. The purpose of the study is to determine if digital health technologies can help improve daily function and reduce pain.Read More

Virtual Medicine Conference – March 24, 25, 2022

https://virtualmedicine.org/conferences/about

Virtual Medicine Conference

Save the Date!
vMed22 returns March 24 – 25th, 2022
Sofitel Hotel, Beverly Hills, California

Developed by the Cedars-Sinai Virtual Medicine program with generous support from the Marc and Sheri Rapaport Fund for Digital Health Sciences and Precision Health, the annual Virtual Medicine (vMed) Conference is a two-day symposium that convenes the brightest minds in Medical Extended Reality (MXR). Attendees learn from case studies, didactic lectures, patient vignettes, and simulation workshops to achieve the following educational objectives:

  1. Review evidence supporting the efficacy of MXR applications.
  2. Study use cases and clinical vignettes where MXR worked – and didn’t work – to improve patient outcomes.
  3. Learn best practices and pragmatic tips for implementing MXR technologies into clinical workflows.
  4. Discuss the cost-effectiveness and payer perspectives of MXR programs.
  5. Hear directly from patients who have received MXR therapeutics.

Who should attend

Virtual Medicine is intended for a wide range of stakeholders seeking to learn about the implementation, outcomes, and cost-effectiveness of Medical Extended Reality (MXR) in clinical practice and the role of MXR in medical education and simulation.

Participants include clinicians using MXR for patient care, patients exploring the benefits of MXR as a complementary therapy, hospitals and clinics evaluating the health economics of starting an MXR program, industry partners developing MXR hardware and software solutions, journalists investigating the latest advances in MXR, and investors seeking to learn the evidence and ROI for MXR products and services.

Note about COVID-19

The vMed team continues to monitor public health and institutional guidance to ensure safety during the pandemic. Although the long-awaited in-person event remains on schedule for March ’22, we will monitor for updates and hold a virtual event if necessary.

10 Reasons for Lawmakers To Oppose Limits on Rx Opioids – Pain News Network

https://www.painnewsnetwork.org/stories/2021/8/13/10-reasons-for-lawmakers-to-oppose-restrictions-on-opioid-painkillers?utm_content=bufferbba76&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer


10 Reasons for Lawmakers To Oppose Limits on Rx Opioids

By Matthew Giarmo, PhD, Guest Columnist

1. Government Leaders Have a Choice

History may record one day that politicians and policymakers had a choice: They could champion the rights of 50 million Americans in chronic pain who desperately need a hero or they could be scorned for unnecessary cruelty and playing politics with people’s pain.

The gathering storm is a backlash to the heightened regulatory and surveillance culture that has commandeered our nation’s healthcare system. It will not go unanswered. We no longer allow government into our bedrooms to police sexual behavior, gender identity and abortion rights. And we sure as hell will not allow government to spy on our doctors and medicine cabinets.

The government has blood on its hands from chronic pain patients resorting to suicide and street drugs after being abandoned by physicians who fear imprisonment by DEA agents who have no medical training or patient knowledge.

2. Opioids Misunderstood

Opioids are not only cheap; they are uniquely effective in restoring quality and functionality to millions of Americans who suffer from chronic or intractable pain. Opioid medication is safe when used properly, while long term use of ibuprofen and acetaminophen is toxic.

When we examine data on efficacy, toxicity, dependency, teen use, mortality and preventable causes of death, opioids do not warrant consideration as a threat to national health security. There is no opioid “crisis” or “epidemic.”

I believe any determination to the contrary is a byproduct of inappropriate agency regulation (the 2016 CDC Opioid Guideline) and biased and conflicted advice from an extremist sect (Physicians for Responsible Opioid Prescribing) operating at the fringes of the medical community. The growing realization among doctors and patients is that “the fools are in charge” and “the foxes are guarding the hen house.”

Inappropriate prescribing that resulted in spikes of opioid abuse, such as pill mills and dentists disposed to trade 60 Percocet for wisdom teeth, ended several years ago. So did the marketing of extended-release formulations like OxyContin.

3. Junk Science

You may have been seduced by contrived overdose statistics (“500,000 people died from an opioid overdose”) that remain viral, despite the CDC itself acknowledging that 48% of deaths due to illicit fentanyl were erroneously counted as deaths due to a prescription opioid.

When we break down the politically convenient and alarmist statistics into deaths involving polysubstance use, suicide, reckless dosing out of frustration with pain, and drugs that were never prescribed to the decedent, the 125 deaths per day initially claimed by the CDC looks more like 5 deaths a day.

It would be more appropriate to attribute these fatalities more to pain itself than to pain medication, as well as drug experimentation, depression or diversion. Most of those who abused OxyContin reported never having a valid script. That is no basis on which to separate chronic pain patients from their medication.

But as long as an opioid shows up in a post-mortem toxicology screen, deaths are being classified as an opioid overdose; even when the opioid was one of several drugs consumed, when it cannot be determined whether the opioid was consumed in a medically relevant way, and even when the decedent was hit by a bus.

The overdose numbers had to be gamed, which makes sense when you consider that in 70% of cases, rulings on causes of death are made before the toxicology data is even available. Especially when you consider that those sky-high opioid fatalities seem out of step with the low rates of dependency (6% for chronic pain patients, 0.7% for acute pain and less than 0.1% for post surgical pain).

As a social psychologist, government analyst and research critic, I have identified about a dozen ways the science of opioids has been corrupted for financial gain, professional survival or advancement, and in service of a political cause.

One example is the claim that 80% of heroin users first misused prescription opioids.” That canard was violently ripped from a SAMHSA report and is misleadingly used to imply that 4 in 5 patients prescribed painkillers eventually use heroin. On the contrary, less than 4% of prescription opioid users turn to heroin. 

Incidentally, 67% of heroin addicts reported that their prior use of prescription painkillers had not occurred in the past year. Hardly seems like an irresistible urge to me.

4. Not Knowing When to Say When

Much like Sen. Joe McCarthy wreaked havoc on a nation with reckless claims about communist infiltrators, opioid McCarthyism is killing our most vulnerable and innocent populations — veterans, senior citizens, persons with disabilities and the chronically ill.

Regulations complicate and delay the dispensing of legal scripts for these patients at the pharmacy, creating a “what’s-it-gonna-be-this-time” syndrome in which patients endure a new burden every month.

Prescriptions for opioid painkillers have declined 40% since 2011, while overdoses on heroin and illicit fentanyl have soared. As National Public Radio falsely reported that doctors are “still flooding the U.S. with opioid prescriptions,” solid research offers definitive evidence that prescriptive austerity is helping to drive the spike in overdose fatalities.

A recently published study found that among 113,000 patients on long-term opioid therapy, the incidence of a non-fatal overdose among those subjected to tapering was 68% higher than those who were not tapered. The incidence of a mental health crisis such as depression, anxiety or attempted suicide was 128% higher among those who were tapered.  

5. The Inherent Absurdity of MME Thresholds

Forced tapering is undertaken to achieve an arbitrary one-size-fits-all threshold that makes no sense. There is no basis in science or nature for determining how much medication is too much. As long as patients are started at the lowest effective dose and titrated up gradually, as dictated by unresolved pain and any side effects, there is no limit to how much a patient might need 5, 10 or 15 years downstream.

Arbitrary dose limits defined in terms of morphine milligram equivalents (MME) ignore the importance of individual differences in medical diagnosis, treatment history (tolerance), and enzyme-mediated (genetic) sensitivity to pain and to pain medication. MME thresholds falsely assume that all opioids are equal and impact all patients the same way.

MMEs may be convenient for bureaucrats and expedient for politicians, but their scientific utility — and by extension the CDC guideline itself — is nullified by differences in the half-life of different drugs, differences in their absorption into the bloodstream, and differences in their rate of metabolism in different people.

6. Without Liberty or Justice for All

For arguments sake, let us suppose that we lose as many souls to prescription opioids as we do to car accidents. What have we done to rein in this other preventable cause of death? We create laws requiring safety belts, air bags, annual inspections, and compliance with speed limits. We do not criminalize the sale, operation and distribution of Honda Civics. We do not restrict the number of cars on the road. And we do not drop DEA teams behind enemy lines in Detroit.

But at a time when Americans are growing weary with a drug war that has lasted longer than our wars in Vietnam and Afghanistan — and when Americans have softened their views on marijuana — the DEA, perhaps in a desperate search for new bogeymen, expanded its theater of operations to treat pharmaceutical companies as drug cartels, doctors as dealers, and patients as addicts.

As we speak, your state is creating a mini-DEA inside its Department of Health or Medical Board that weaponizes the Prescription Drug Monitoring Program as a surveillance and detection tool, to spy on and red flag each patient and doctor whose script or “NARX Score” exceeds an arbitrary limit for which no basis in science or nature exists.

Think about all the sacred ideals we’ve abandoned to support our failed effort to bring a specious “opioid crisis” under control: the Constitution; a compassionate care system that had been the cornerstone of a civilization; a physician’s right to exercise clinical judgement; their right to due process; and a system of individualized, patient-centered care.

Government is obliged to ease civil unrest — not foment it. But federal and state governments are hell bent on driving wedges between groups of stakeholders: physicians against patients; patients and physicians against pharmacists; patients against the public at large; physicians against their own office staffs; patients against employers; and physicians against medical boards. That is McCarthyism.  

All too commonplace on social media are acrimonious altercations between the grieving survivors of overdose victims and those caring for friends or family living with chronic pain. There’s no reason we can’t simultaneously provide the medicine, assistance and requisite sympathy to Americans who need addiction treatment and Americans who need pain medication — especially when we consider that only 6% of chronic pain patients prescribed painkillers develop dependency.

The NARX Score itself, a deeply flawed hotdog of a composite that ostensibly assigns a number to a person based on their supposed risk of overdose, is morally and intellectually offensive. It does little to assuage those who use the term “pain patient genocide” and compare it to the demonization and murder of 11 million Jews, gypsies, homosexuals and criminals in Germany during the Second World War.

7. Opioid Crisis As a Scapegoat

Have we as a nation become more addicted to the “opioid crisis” than we ever were to opioids? For our nation’s leaders, opioids have become an irresistible diversion and scapegoat. It’s a means to repair a tarnished reputation (see Chris Christie) or display rare bipartisan unity to disarm a cynical and frustrated constituency.

In a striking reversal of cause and effect, government officials would have you blame opioids for the loss of jobs, identities, finances and relationships that have come to define life in 21st century America. In reality, we have two crises: a crisis of chronic pain estimated to involve 50 million Americans and a psychosocial crisis linked to the combined effects of economic disparity, globalization, automation, immigration, social media, terrorism, pandemics, and the dissolution of national unity into political sects and interests.

Opioid critics like to point out that opioids only mask painful symptoms rather than address the underlying cause. But isn’t that what government officials do when they attempt to conceal or compensate for the true ills of our nation by playing whack-a-mole with prescription pain relievers?

8. The One-Track Mind

Last year a record 93,331 Americans died of a drug overdose, the vast majority involving illicit fentanyl and other street drugs, not prescription opioids.

We observed a 190% rise in cocaine overdoses and a 500% rise in overdoses involving methamphetamine. We have also seen increases in the abuse of alcohol and OTC substances like dextramorphan, diphenhydramine, ibuprofen, acetaminophen and loperamide, a drug used to treat diarrhea.

How many of those deaths can we blame on Purdue Pharma? Will collecting billions of dollars in settlement money from opioid distributors solve our overdose problem? Or will it enrich plaintiff law firms just like the Tobacco Settlement did?

9. An Unfair Fight

I was inspired to write this by a family — MY family. I know what it’s like to see a patient’s treatment plan forcibly altered and how it affects not only the patient, but all those who cherish and depend on them. Children get less attention. Spouses assume a greater share of household responsibilities. Employers deal with lower productivity.

This memo and a lengthier report will go out to families and physicians across the country with the aid of hundreds of patient-advocate communities I mobilized on social media platforms. Still, it hardly seems like a fair fight. The meek of the Earth versus an army of federally funded Type A regulators and paid expert witnesses falling over one another to advance their careers and pad their bank accounts by making life harder for people to treat their pain.

10. Taking the Battle to the States

You may decide against reading my report, but you will likely hear about it from peers, co-workers or constituents in the months to come. It is making the rounds. State legislatures. Medical boards. Medical associations. Patient advocacy groups. Defense attorneys (I was twice asked to serve as an expert witness by physician counsel). Federal agencies.

In the past two weeks, my associates have disseminated my report to the American Medical Association, AARP, federal and state officials, members of Congress and the White House.

I invite readers to do the same by downloading my report, “There Is No Crisis.” We’re just getting started.

Matthew Giarmo, PhD, is a social psychologist who has worked with terminally ill cancer patients. Matthew authors research-based reports in social phenomena, including the impact on workforce development of the Software Revolution and Great Recession, and the degradation of science by professional and institutional requirements. 

Is Grit and Resilience Real? And How Do You Get It? – WebMD

https://www.webmd.com/mental-health/news/20211022/how-to-get-grit?ecd=wnl_cbp_103021&ctr=wnl-cbp-103021_promo_link_3

WEBMD HEALTH NEWS

Is Grit and Resilience Real? And How Do You Get It?

By Lambeth Hochwaldstruggling womanShare on FacebookShare on TwitterShare on PinterestSaveEmail

Oct. 22, 2021 — While you may hear the words “grit” and “resilience” bandied about a lot, it turns out that both are personality traits that can be critically important in helping guide you through life, no matter your personal stressors.

And, while you can absolutely become resilient over time, your background plays a role, as it provides some of the key building blocks to bouncing back during even the worst of times.

“Some people become more resilient due to such life experience as loss, trauma, and stress,” says Julie Sochacki, JD, a clinical associate professor of English at the University of Hartford, who began teaching her first-year students about resilience when her son was diagnosed with cancer. (He’s now in remission.) “Those experiences give you opportunities to practice resilience skills. By contrast, if your life has been easy, you may never have practiced those skills.”

Besides a history of handling tough times, optimism and confidence are other traits associated with resilience.

“Resilient people tend to see the glass as half-full,” says Ken Yeager, PhD, director of the Stress, Trauma and Resilience (STAR) program in the Department of Psychiatry and Behavioral Health at Ohio State University Wexner Medical Center.

When you’ve got grit, you tend to pair your sunny outlook with a willingness to take calculated risks others probably wouldn’t take.

“Resilient people don’t fear failure,” Yeager says. “And they don’t see failing on a task as a reflection of their individual ability. Instead, they learn from the failure itself.”

Five Ways to Build Resilience

The good news in all this? You’re never too old to find that inner grit.

“The ability to bounce back even when times get tough can be learned and developed,” says Natalie Bernstein, PsyD, a psychologist in Pittsburgh. “I always say that it’s never too late to become more resilient.”

Here are five ways to become more resilient:

Put things in perspective.

If you change your mindset, you can bounce back better, Bernstein says. “Gaining perspective is one of the easiest ways to do this,” she says. “So, instead of thinking you’re having a bad day, for example, perhaps you’re having a bad moment instead. To gain perspective, pay attention, pause, and practice reframing these feelings.”

Rethink stressful situations.

To become more resilient, it’s a great idea to try to see the bigger picture and consider whether you have a role in a particular situation, Bernstein says.

“It’s possible that the honk you heard from a driver was to thank you for letting him or her into your lane and not because he or she was being impatient,” she says. “Just like it’s possible your partner or boss is having a bad day and that’s why he or she snapped at you. By being clear about others’ actions — and realizing that they likely have nothing to do with you — you’ll cope better.”

Practice gratitude.

Research has shown that gratitude has the power to change attitudes.

“By focusing upon the many things that are going right in your life, you’ll be better able to adjust to less-than-ideal situations,” Bernstein says.

Seek support.

Having a support system of family and/or friends that you can rely upon to have your back can be very helpful.

“Knowing you have people to stand by you in difficult times can help you feel stronger and better able to handle what life throws your way,” Bernstein says.

Acknowledge your feelings before acting on them.

Ultimately, ignoring stressful feelings won’t help you find your inner grit.

“Instead, to get on the path to becoming more resilient, make sure to validate your feelings and give yourself some time to feel disappointment and fear,” Bernstein says. “Once you’ve given yourself the space to do that, make a plan of how you want to respond or move forward. Even this small act on your part will go a long way to helping you build strength — and grit.”WebMD Health News

Sources 

© 2021 WebMD, LLC. All rights reserved.

How Chronic Illness Has Turned My Life into a Relentless Cycle – The Tower Princess – The Mighty

woman lying in bed awake
Chronic Illness

How Chronic Illness Has Turned My Life Into a Relentless Cycle

Emma Hamilton  •  FollowMay 22, 2017


My chronic illness has turned my life into a tiring, relentless cycle of unproductive nothingness.

I wake up and dread the day ahead. I eat my breakfast, which I am only eating so I don’t feel nauseous after taking my highly addictive anti-inflammatory pain medication. Then it’s a waiting game – waiting for the pain meds to kick in so I can move with some normality. Then it’s time for work, time to hope the day will go smoothly with minimal pain, as I can’t afford to lose my job because I need to pay for my doctor bills, my specialists and the pathology charges. By the time home time comes around I am exhausted and my painkillers have well and truly worn off. No time for fun, family or anything that involves being out of my bed – the only place I don’t feel any pain. A relentless cycle, and the worst part of it all is getting up the next day just to do it all again, like a sad record on repeat, each time going a little slower. The days that are brighter are few and far between, the days the pain subsides just enough to carry out everyday activities like meeting up with friends after work or going out on a Saturday night. The only issue is that these days leave me exhausted and unprepared for the worse ones that are yet to come.

The thing most people don’t realize about chronic pain and illness is that I’m not just dealing with the pain itself, but the results of the pain. The messy bedroom/house, the relationships that fall apart, the lack of fun and enjoyment, the days when it’s just too hard to get out of bed, the days of trying to conceal it at work so as not to lose my job. It’s the prioritizing, the anxiety of not knowing when it’ll end, the depression, the emptiness, the anger and frustration, the lack of sleep and extreme fatigue.

The most frustrating part of chronic illness is the doctor appointments, treatments and false exceptions. Being told “this should have immediate effects” only to wake up the next morning after treatment to find yourself in the same amount of pain you were in yesterday and put back onto painkillers until the doctor thinks of another option. The worst feeling is the unknown, not knowing when and if you are going to get better, not knowing what treatment option is around the corner, not knowing when your next good or bad day will be, if your pain will subside enough to go to that social event.

Chronic pain is not just a condition. It becomes a way of living – not even living, a way of surviving. Always be kind to people because you never know what’s going on in their lives. We all struggle with invisible ailments. We are all stronger than we appear on the surface. If my illness and pain have taught me anything, that would be it.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via klebercordeiro.

Friday Morning Inspiration – Marian Griffey

Good morning, everyone ~

I’ve been thinking a lot lately about roller-coasters. 

Roller Coasters and Placental Abruption

I was married with pre-teen children before I ever rode one. That was a kiddie ride at Disney World. I was fairly proud of myself for making it to the finish line without passing out, screaming, or throwing up. 

My sons asked if we could ride another roller-coaster, and feeling very confident about my newly discovered abilities, I said: “Sure!”

“Thunder Mountain” is NOT a kiddie ride!!!!  Whisking through dark tunnels at high speed; jerking right, then left without warning; dropping suddenly into nothingness! All my confidence disappeared, never to be found again. I exited the car on shaking legs, with a head filled with dread for how my two young children had fared … alone … in the dark unknown … possibly injured during some sharp twist or maybe thrown from the vehicle. 

No — they both got off laughing. LAUGHING!!!!!!! Which made me feel both relieved and foolish.

To this day, I wonder how anyone can find roller-coaster rides “fun”! The uphill climbs are a bit boring. The downhill plunge is heart-attack making. Where is the “fun” in being that frightened?

Today is Halloween — filled with goblins, ghouls, zombies … and very few super heroes. (Are we growing numb to things that once frightened us? Or, have we given up on finding heroes who walk amongst us?)

Halloween spooked by scary virus - BBC News

These past two years of pandemic have taken all of us on an invisible roller-coaster ride. Sometimes the ups-n-downs have been so rapid that we’ve been left with a sense of dizziness and uncertainty. The experts have changed direction too often, too quickly, leaving us confused. We find ourselves consciously aware of inner anger when we see someone wearing or not-wearing a mask. Every news story coverage of someone who has contracted COVID, or has just died from complications of it, or the random ‘lottery’ of who survives and who doesn’t — well, it can be enough to make us ill at ease with ourselves/others.

It’s a roller-coaster ride that no one enjoys, for it comes without any sense of safety. On “Thunder Mountain” there is an unspoken sense of safety in knowing that precautions have been made. The lap-bar provides a comfort — something to hold onto — when the challenges get tough. We see the vast majority of people coming out of the experience with no ill effect, and most of them are smiling, laughing, sharing their experiences in the created-dark/free-fall into pseudo-danger. 

How to Handle Coronavirus Stress – Cleveland Clinic

COVID and the various forms of vaccination do not provide us with a similar sense of safety. Yet, we grasp hold of some invisible bar of Faith that we’re doing the right thing, making the right choice … trusting in the methods, science, statistics (as much as we can). We think we see the Truth beneath the cloak of confusion. We either reach for the goodie or avoid that “door” altogether. 

We’re all, all over the world, on a roller-coaster ride with COVID and science. Both heroes and villains are walking our neighborhoods. Fear itself is wearing a mask. Sometimes, that mask is a clever disguise and, other times, it’s a real fright! The common denominator in this is that mixture of fear and expectation-of-joy when the ride is over. It isn’t the falling that makes us laugh at the end of a roller-coaster ride. It’s that feeling of sheer wonder that we survived!

The Emotional Rollercoaster of Parenting - Aviva Barnett

Stay safe. Stay curious. Stay aware and informed, and trust your own instincts. May your bag come home filled with only treats; no tricks! Happy Halloween ~ let’s fill the world with relieving laughter today, knowing that we have (thus far) survived! Who knows? The “ride” may be over tomorrow, and we can all return to Life as it was Before The COVID Ride, when the villains and heroes could be easily distinguished, even when both were wearing masks of disguise.

Trick or treat times for Halloween 2021

Gentle hugs/much love,

Marian 

Novel Non-Opioid Based Therapeutics for Chronic Neuropathic Pain – PubMed.gov

https://pubmed.ncbi.nlm.nih.gov/34373667/

Novel Non-Opioid Based Therapeutics for Chronic Neuropathic Pain

Timothy M Doyle 1Kathryn Braden 1Caron M Harada 1Fatma Mufti 1Rachel M Schafer 1Daniela Salvemini 1Affiliations expand

Free PMC article

Abstract

Chronic neuropathic pain is currently a major health issue in U.S. complicated by the lack of non-opioid analgesic alternatives. Our investigations led to the discovery of major signaling pathways involved in the transition of acute to chronic neuropathic pain and the identification of several targets for therapeutic intervention. Our translational approach has facilitated the advancement of novel medicines for chronic neuropathic pain that are in advanced clinical development and clinical trials.