1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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Short Survey for Center in Southeast

Discussion in 'General ME/CFS News' started by usedtobeperkytina, Aug 18, 2012.

  1. usedtobeperkytina

    usedtobeperkytina Senior Member

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    A hospital in the southeastern United States is considering a center of excellence for NeuroEndocrineImmune diseases. No matter where in North America you live, please fill out this short survey to help them in deciding whether to open up such a center and what should be provided there:
    http://survey.constantcontact.com/survey/a07e6a230arh6193mcp/start

    If you are a parent, please fill it out on behalf of your child.

    Please pass on to other patients in North America, particularly those in the South. Be sure the url address you share ends with "start."

    Thank you. We are very excited to see this interest in our disease.
     
  2. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Posting again so I can mark that I want to monitor this thread. If anyone has any questions, let me know.

    Tina
     
  3. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Reminder, the question about how you pay, note it says how you pay for most or all of the physician's office services.
     
  4. Marg

    Marg Senior Member

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    Done and passed to others..
     
  5. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Wow, this sounds like a really good development!

    GG
     
  6. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Yes, it is.

    Tina
     
  7. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Avoid filling out the "other" window. If you pay for most of your physician services through one of the options listed on that question, choose it. We're getting some "other" answers that should have chosen one of the answers given.
     
  8. usedtobeperkytina

    usedtobeperkytina Senior Member

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    So far, 172 have taken the survey. Trying to convince this hospital there are millions of us (if you include Lyme and fibromyalgia patients) will be easier if lots of people take the survey. It only takes 2 minutes. The goal is 1,000. Is especially needed for those in the Southeast. Please share.
     
  9. Nielk

    Nielk

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    Done - passing it on...
     
    usedtobeperkytina likes this.
  10. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Progress Report. So far, 524 have answered the survey. Our goal is 1,000. Keep sharing. Might be good to not use the word "survey." Just ask people to answer these five simple questions.

    A hospital in the Southeast United States is now interested in creating an NeuroEndocrineImmune (NEI)Disease Center. Please consider filling out this short survey if you are in North America and have fibromyalgia, ME or CFS or chronic Lyme. It is recommended that you avoid the use of "other" when possible. There is one question regarding how you pay which is specifically asking how you pay for
    most of the costs of treatment.

    http://survey.constantcontact.com/survey/a07e6a230arh6193mcp/start

    Be sure that you url address you share ends with "start."
     
  11. Desdinova

    Desdinova Senior Member

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    Did my part. I'm Assuming this is / would be a research based center?
     
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  12. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Actually, at this point, Desinova, we don't expect it to be. This is a system of four hospitals.

    In the metropolitan area, there is a big research center / medical school. However, they are not interested. I already tried.

    However, if we get the clinical part set up, as is the case with many other clinics, I imagine the patients will end up participating in research. Kim McCleary said in a recent interview that when they followed up with researchers who had done studies in the past, they said they didn't do any more because they didn't have access to a patient cohort. Just having a place where ME/CFS patients go, will likely open doors to research at this place, if they are interested. One step at a time, though.

    Tina
     
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  13. Desdinova

    Desdinova Senior Member

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    Thanks for the reply a little disappointing but nothing ventured nothing gained. I won't lie I am a little curious as to what approach they would use in addressing and treating patients. Will they be free thinkers or mainstream thinkers? Time will tell I guess.
     
  14. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Yes, we don't know that. But, we have to get them to learn about the disease, see the possibilities as shown in the survey, get them to find a local physician who is interested, make sure that physician is trained to what other experts in the field know, etc. Step by step.

    They have agreed to CME courses. They are open to finding out about the patient population to see if a center is feasible and would need to be included. Now, on to the next step. While I think it would be great if they made an offer to one we already know and trust, really, we need to have more physicians specializing in these diseases, not just move around the ones we already have.

    The good news is that they don't know enough to reject what we bring to them. I am very pleased that we are not shut down on immediately from the medical director. I don't know how much he knows. But, he evidently isn't biased so that he rejects the concept outright. That is good. And the good news is that research is already having an impact. So if any physician is halfway paying attention (which many aren't, but some are), then he knows these diseases are real and debilitating.
     
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  15. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Filled it out. Thanks for doing this Tina. Of course a teaching hospital would be ideal, so thanks for asking them. But as you say it is also really necessary for us just to have doctors who know what they're doings, especially those affiliated with hospitals.

    Unfortunately, as I'm sure you know and we've discussed, almost every source doctors use for info, med texts, review articles and CDC and NIH, are horrendously inaccurate, so pls try to do your best to guide them to ICC, CCC etc, as im sure you will do and explain to them the whole messed up situation. Again, thank you so much!
     
  16. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I have moved to Rhode Island and have tried to contact Chris Carpenter, an AIDS specialist at Brown who used to head the hospitals now defunct "CFS" clinic. I haven't had any luck yet. I went to Brown and I'd love for them to have an ME and Lyme clinic of course. I see Enlander so I don't really need it but just in general as we've said we need doctors and it seems there are going to be less than there were twenty years ago as they start to retire!!

    I think it would be good to talk to other hospitals too, as you did. Lyme is big here (i found out i have it too). Im going to see if there are any credible lyme clinics and see if they could expand to ME too. Any advice about doing any of this from what you've learned?
     
  17. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Justin, interesting to hear (see) you have moved.

    Justin, I can't speak to how you would get a Lyme clinic to include ME/CFS and / or fibromyalgia. If they have enough patients with the Lyme group, they may not want any more. If they don't have enough patients, then ME/CFS and fibromyalgia are naturally the diseases to include. ME/CFS includes infections of all sorts and has similar symptoms to chronic Lyme. And 70% of people with ME/CFS and lots of those with Lyme have fibromyalgia.

    The difference in what I am doing here is that I am starting from scratch, no existing clinic.

    First, a politician who has one of these diseases opened the door for me to meet with the CEO of the hospital system. It's who you know. And I just happened to stumble across a politician with a personal interest. I met him through work I do for another client while I was at a chamber of commerce meeting. So, be a member of a non-profit org., such as PANDORA or a local non-profit / support group that has 501c3. Higher ups, including CEOs and politicians listen to org reps more than they do individual patients. Sad, but true.

    Then, connect with people in power: politicians and business people. They can get you connections to the medical people in power. In addition to working on this center, I am working on a resolution with a state policy person, who I met through work with another client and met at a chamber meeting. He has agreed to help us get a grant, also.

    Here is a key if you are starting from scratch. You can't make it about one disease. There are advantages and disadvantages to each of the diseases: ME/CFS- hard to diagnose and few money-making tests, procedures or treatments, advantage- underserved and fairly large number of patients; fibromyalgia- easier to treat, also underserved but not as much, higher percentage of population, disadavantage-not as underserved; Lyme- highly controversial as a chronic condition, low prevalence, treatments not covered by insurance, advantage- underserved in many states.

    So, the advantage of one cancels out the disadvantage of another. If someone has an objection to one, you have another they can embrace. Marly's idea of seeing these diseases as a group is effective in dealing with outsiders. It's not just one obscure, mysterious, controversial disease. (Who would want to do a center on that?) It's a group of diseases with lots of people that need specialized care to make the delivery system more efficient and relieve the main street clinicians of spending time on patients and diseases they know very little about.

    Now, I have showed the population numbers and showed the demand to these administrators. The survey helped to show the problems in care. They have some preconceived notions and skepticism. But, we are overcoming these. One thing you need to know, be strategic. Don't try to convince them of the science you believe about any of the diseases. Don't get into a scientific debate with administrators. You are not a clinician or scientist. Just show the patients exist and a center is the best way to go to solve the problems, both for the clinicians and the patients. When you get them to agree to pursue setting up a center, or at least doing CME courses, then you can approach the science part of it and educate the physicians in what you want them to know. Also, must take a conservative approach. Whether it is the clinician at the center or the CME courses, can't be someone hocking vitamins as the cure all when no studies support it. It's not what I believe that counts. It's what I can get in front of them. Once we get a clinician in a center, we'll get them educated on the other stuff. One step at a time.

    I started off with the approach that there are thousands of patients in the state and many more will travel here if a center is created. I thought of it like a business man needing customers. I showed the lack of services available in the state. However, as I had the multiple meetings, I discovered their physicians are hesitant because they see us as patients who require long visits without enough financial reimbursement, compared to more patients with shorter time required. Also, the diseases are complex and confusing and the patients never get well. What doctor wants to do a center like that? As Komaroff said, we are a clinician's nightmare. (paraphrased). Want to go broke as a clinician and live with daily frustration, start treating people with these diseases. No good diagnostic tools, not effective treatments, lots of time and not enough reimbursement for that time. I called a rheumatologist randomly here in the state. He said that he accidentally ended up having lots of fibromyalgia patients. The clinical director he worked under had a sit-down with him and explained that since he was spending so much time with the patients and not being reimbursed enough, he wasn't even making enough to cover his malpractice insurance. That rheumatologist left that clinic and now works at the V.A.

    We must address the long time the patients require if we are to increase access to good care. In the recent phone call Unger had with patients, she said the response from physicians who are taking the Medscape CME course is that long office visits are the main barrier to their offering good care to ME/CFS patients. (She said 85% say that.)

    So, I changed my strategy from "look at all the patients you will have if you have such a clinic" to "these patients are here and more are coming to your physicians; they aren't going away; what is the most efficient (profitable) way to provide care for them?"

    I am encouraging and pushing the physician primer. I have already distributed three copies to these administrators. That is based on the CCC. I am particularly looking for clinicians somehow associated with the CCC to suggest as instructors for the CME course.

    I've sent you a private message. Please read it and respond.
     
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  18. usedtobeperkytina

    usedtobeperkytina Senior Member

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    And Justin, at this point, I am trying to lessen their concept of there being confusion over diagnostics. I don't want them to think this is just too messy to get involved in. Contrary to that approach, I am telling them that much research in recent years have cleared up the confusion over diagnosing, treatment, etc. The problem is that that knowledge from research is not getting to clinical care. So, it isn't as confusing when you learn about it.

    And I am emphasizing that CME courses will help to clear up the physician confusion. But I am also emphasizing that a center where the clinician keeps up with the research will make it easier for all clinicians and is more effective than trying to keep all clinicians up to date, since there is no one specialty these diseases belong in.
     
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  19. usedtobeperkytina

    usedtobeperkytina Senior Member

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    As part of that, I am saying, "And just a couple of months ago, we got this wonderful primer that makes it much less confusing to clinicians."
     
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  20. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    OK, thank you Tina. Very helpful. Makes preeminent sense!
     

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