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Medical Study on Chronic Mesh Pain Needs to Hear From You!

Mesh Medical Device News Desk, April 6, 2017 ~ People suffering with chronic pain are asked to attend a one-day workshop in the Pittsburgh, Pennsylvania area.

Still Standing, a contributor to Mesh News Desk, is involved with a partnership with the University  of Maryland and other institutions from around the world to teach researchers in chronic pain what they need to be measuring for outcomes. Chronic mesh pain certainly qualifies. 

There is a big gap in research about pain and the ability to translate that to interventions that actually help pain patients.  Meetings will bring in people who live with chronic pain to work with scientists who study pain. It is an important step in pain research.

Still Standing will be there and it is part of the American Pain Society annual scientific meeting. There is some money available for a small travel and time stipend. Food and refreshments will be provided.  The principle investigator is at the University of Maryland. Her contact information is on the attachment. If any one is interested in attending, they just need to contact her for more details.

MAKE YOUR VOICE HEARD!

 

In order to better understand what researchers should know before engaging in patient centered outcomes research with the chronic pain community, the University of Maryland School of Public Health in collaboration with PAINS and the National Research Council is looking for patients living with chronic pain and their caregivers to invite to a one-day working meeting in Pittsburgh, Pennsylvania on May 17, 2017. The working meeting will be held 10am – 3:30pm in rooms 401/402 of the David L. Lawrence Convention Center in Pittsburgh, Pennsylvania. To facilitate your participation, we can provide a stipend to cover your travel expenses and time, as well as lunch and refreshments during the meeting.

The purpose of this one-day working meeting is to discuss approaches for including community stakeholders in cultural competency/health literacy training for researchers interested in engaging in patient centered outcomes research (PCOR), and the added value of using patients as teaching partners. This working meeting directly addresses the National Pain Strategy which calls for improvements in “discipline-specific core competencies, including basic knowledge, assessment, effective team-based care, empathy, and cultural competency.”

During our meeting, we will review findings from an updated literature review of the role of patients/caregivers in health professional education, as well as findings from focus groups and in-depth interviews with patients living with chronic pain and chronic pain researchers. Most importantly, we will tease out together the key principles of a cultural competency/health literacy curriculum for patient-centered outcomes researchers; recommended evaluation and assessment methods and approaches to measuring patient engagement; and successful models.

If you are willing to give a little of your time to help inform implementation of this important aspect of the National Pain Strategy, please confirm your attendance with Dr. Olivia Carter-Pokras at opokras@umd.edu by April 14, 2017.

24 Comments

  1. Tammy (KY) says:

    I wrote for attendance. I would love to be apart of this study. I’m traveling to Washington DC June 1-4 for Patient Advocacy Conference

  2. Still Stnding says:

    jane, Thanks so much for postng this. Just a small clarification. The workshop is for all types of chronic pain. I would certainly like to have the voices of women with mesh pain heard.

  3. Angela G says:

    Hi, I came upon your article on the web while searching for mesh articles. I would love to attend and help out in your seminar. Only thing I would have to have my plane ticket at least covered. I’m disabled and live on limited income. Let me know if this is feasible

    • Still Standing says:

      See post below. Stipend should be adequate for air travel unless you plan totravel first class. I don’t know what the hotel rooms cost but I can check on that tomorrow. Sorry I am so in the dark about the financial end of this. Have had my travel and lodging done by someone else, so I just didn’t pay much attention to it. I will be in a meeting the afternoon and evening before the workshop, but I would love to spend some time after the meeing with any mesh woman who can make the trip. Just let me know and we can plan for that.

  4. Cheryl w says:

    18 meds three machine continue back pain..very interested if i could get the plane ticket and return as well as being picked up at the airport on disability forbstrike at 29 now 60 with mesh that is slowly killing me

  5. Still standing says:

    Angela, I appreciate your willingness to be part of this group. I will have to talk to Olivia about funds, but Im pretty sure it wont pay for airfare or lodging. However, I will check to make sure. We were basically recruiting in the Pittsburgh area. We also have some link up capabilities. Will have answers for you tomorrow.

    • Still standing says:

      I wanted to get back with an answer. People with chronic pain will be given a stipend of $2300.00. This will cover air travelers lodging and other travel costs. We will not be able to coordinate the scheduling of flights or lodging. Participants will be reimbursed through the University of Maryland. You will be given specifics on how to get reimbursed shortly. Judy remember, this conference is on all chronic pain, not just mesh focused. Hope this info helps

  6. Denise says:

    Close to me. Would love to go to chronic pain study….. maybe we can get someone to see what mesh has done…

    • Still Standing says:

      Denise. This is not a study. It is a one day workshop where people who live with chronic pain interface with scientific researchers who study chronic pain. Hopefully, they will be learning from us. I am working on the participant expectations and hope to have that draft to Olivia tonight. I do want to stress that this is NOT a workshop where you will talk about your individual pain condition. Instead, you will be communicating your pain experience to the researchers in a structured way,teaching them what they need to be looking for. Believe it or not, this is an issue with pain research. This workshop is for anyone who has chronic pain, men or women. I just don’t want anyone to go with an expectation that this is a meeting about mesh pain and discussing it in detail. In fact, there will be few if any physicians in the workshop. We absolutely need your perspective. It is a pretty packed agenda for the day so we hope to stay on the task at hand. We won’t be able to do that if all of the participants tell their particular stories. By the way, we will have 24 pain participants. If any of you want some more specific information about the workshop, let Jane know and I will try to explain it better. It is part of research grant. It is a pretty generous stipend for travel and lodging. I didn’t expect it to be that much. So , with all that said, I hope to see some of you participating in this hopefully transformational workshop. We have research partners from around the world, so it is not just a USA thing. Of course, I love research, so this is really exciting for me. But just think that what you contribute to this workshop could impact people wo live with pain for generations. That is ameaningful contribution.

  7. Norma says:

    I would be interested in attending. I live close to Pittsburgh. I suffer from back pain and pelvic mesh pain

  8. Mart says:

    I live 2 hours away from Pittsburgh I also suffer from chronic pain and I suffer from the pain from my mesh removal surgery and from condition that occurred before having the mesh removed I have been diagnosed with connective tissue disease my rheumatologist thinks I may have lupus does this cause autoimmune diseases

  9. Mart says:

    Who do I contact in regards to attending this meeting in Pittsburgh Jane help I’m willing to go to this meeting

    • Jane Akre says:

      Within the story is a contact at the end. Good luck!!

    • Still standing says:

      Please contact Olivia, the primary investigator. Her contact information is at the end of the announcement above. I understand how painful travel is. All of you who are willing to get there are so awesome! If you live close to Pittsburgh, you can definitely expense out your gas and your hotel stay. Ke ep me posted if you need any additional information. I will try to get answers for you!

  10. Patient Advocate says:

    I will attend and confirm Monday.

  11. Tammy ( KY) says:

    I’ll be attending. I’m so excited and I believe this will be a great opportunity to teach what Mesh Implants have done to us.

    • Still Standing says:

      Tammy, Im glad you are on board. I do feel that i need to repeat this message. This is NOT a meetng about mesh and what it has done to us. There will not be a discussion about the harmful effects of mesh. There will not be an open forum to discuss individual pain conditions. This is a workshop on chronic pain , not just mesh pain, that pairs people who have chronic pain with scientists who research chronic pain so that researchers can better understand what they need to be measuing in research. It will hopefully be a good day where a converstion about chronic pain will result in betteer science to study it. It is not a medical meeting at all. Researchers are not necessarily medical doctors. It is completely a scientific meeting.

      I just don’t want mesh women to travel to the meeting with expectations that won’t be met. It is your chance to inform science, to contribute to better science, but it is not set up to discuss the cause of your pain. Does that make sense? I sent out the notice to Jane because I think mesh women do have an interesting perspective on chronic pain and can make a valuable contribution to the discussion and the outcomes for the day. There will be people there with many different kinds of chronic pain. I really don’t want any mesh participants to go with different expectations.

      • aryals says:

        iam attending the may17th meeting would like to get with some of the ones that are going read on your comments all the time i live southeast ga done been accepted to go got confirmation could u contact me 912-258-2097 or email thanks aryals

  12. anon says:

    Still Standing,
    \i want to be a part of this but can’t go this time. What about a live broadcast with skye or facebook? Or from this website? PLEASE ASK.

    Jane, I lost everything got nothing and can’t talk about it. I feel so lost.

  13. Leo Valdez says:

    I would love to attend, but first I need to find a new pain clinic, The pain clinic I was being seen at was recently shut down, due to some of the staff were selling the doctors scripts… And now I am left without a place to get my pain medications!!! I can’t get in to another pain clinic for six months!!! How is a person to live with this pain… its a nightmare!!! I live in Albuquerque New Mexico, And now what am I to do??? Any advice will help… Thank You!!!

  14. sonja p says:

    I am in constant pain every day, no insurance and not one dr will see me because this pain is related to mesh lawsuit..what am I supposed to do to be able to finally get some help..the pain is sometimes totally unbearable..

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