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Short Survey for Center in Southeast

Gemini

Gemini

Senior Member
Messages
1,176
Location
East Coast USA
justinreilly said:
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?
Click to expand...

years past Yale University Lyme Clinic had expertise, Lyme was discovered in CT. Don't know if that's still the case.
 
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usedtobeperkytina

Senior Member
Messages
1,479
Location
Clay, Alabama
Wanted to let everyone know the survey is now closed. We had over 1,300 respondents. The hospital has agreed to do a series of CME courses for their doctors and nurses on ME/CFS, fibromyalgia and Lyme. It will be in the spring of 2013. We are now discussing which experts to invite to do the courses.

As for the center, the next step will be to get a resolution passed in the Alabama legislature. I am working with the legislative policy advisor to make that happen.

A researcher has expressed interest in having the survey results published in a journal. We will keep you posted on that.
 
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Liz

Messages
19
Location
Atlanta, GA
Tina,
Thank You for your efforts! I know I'm late in posting a comment, but I was looking to see if there was any new news. I did fill out the survey back when you first posted the alert -- just knowing that somebody is thinking of opening a center here in the southeast is hopeful. I'm in Atlanta and feeling particularly isolated these days. 21 years of CFS will do that to you. Many thanks again for your advocacy. Please post any way that ordinary CFS patients like myself might be of help.
 
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usedtobeperkytina

Senior Member
Messages
1,479
Location
Clay, Alabama
Thanks. I hope to have an announcement next week. I can tell you they have approved bringing in an ME/CFS expert for a CME course and have chosen the person and come to terms on the date and amount.

However, they need to do the formal paper work, sign on the line. I think when that is done, we can announce the CME course instructor and date and hospital hosting it.

Also, I am working with someone in state government to have a resolution passed urging all government agencies, hospitals, medical schools and more to work toward creating an NEIDs center and providing more medical provider education on NEIDs. We are finalizing the draft now.

And that's all I know for now. I'll keep you posted.
 
kauri

kauri

Messages
37
usedtobeperkytina said:
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.
Click to expand...

Is this related to the center of excellence that has just opened in the Southeast, in Florida? Nancy Klimas is there. It's called Nova Southeastern?
 
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usedtobeperkytina

Senior Member
Messages
1,479
Location
Clay, Alabama
No, Kauri, it is not. By the way, here is the flier announcing the first CME course. Woo hoo! They are advertising it heavily. They expect 70 doctors and nurses to attend. They will record it for doctors to watch and get CME credit later. Also, they said they would give us a recording. http://library.constantcontact.com/download/get/file/1098473133029-532/ME+CFS+Flyer+(1).pdf

Also, we have more information about it in PANDORA Org's newsletter: http://archive.constantcontact.com/fs156/1098473133029/archive/1112811166456.html
 
Ember

Ember

Senior Member
Messages
2,115
Press Release: Alabama Legislators Support Creating a Clinical Center for Fibromyalgia, ME/Chronic Fatigue Syndrome and Lyme Disease Patients
Clay, AL, May 05, 2013 --(PR.com)-- On April 30, the Alabama legislature passed a resolution saying the governor and all other interested parties should work toward creating a center and improving access to knowledgeable health care for patients with neuro-endocrine-immune diseases, including fibromyalgia, ME/CFS and Lyme disease. A 2012 PANDORA Org survey showed 61% of Alabama NEIDs patients — more than in neighboring states — are not satisfied with their medical care and do not believe their physician is adequately knowledgeable of their disease.

The survey results motivated St. Vincent’s Health System to sponsor a series of courses for their physicians and nurses to learn more about diagnosing and treating these debilitating and often misunderstood diseases. The first course will be on May 7 with Harvard Medical School professor Dr. Anthony Komaroff giving a one-hour course on ME/CFS, also known as chronic fatigue syndrome, at St. Vincent’s East. Lori Chapo-Kroger, president of the national advocacy organization PANDORA Org, is traveling from Michigan to be the patient example in the ME/CFS course. The other two illnesses included in the course series are tick-borne illnesses, such as Lyme disease, and fibromyalgia.

“The best way to correct this poor access to knowledgeable health care is through physician education and creating a center for these diseases as a group,” said Chapo-Kroger. “Because of the support of patients, hospital administrators and state legislators, Alabama seems to have fertile ground for creating an NEI Center, an important goal of our organization.”

According to national prevalence studies, approximately 20,000 Alabamians have ME/CFS (one in 240) and 144,000 have fibromyalgia (one in 40). Lyme disease is the fastest growing vector-borne disease in the nation, and people have come become infected with the Lyme bacteria from exposure in Alabama.

The PANDORA Org survey also showed that 61% of Alabama NEIDs patients searched for an accurate diagnosis for over two years before receiving one, and 59% of Alabama NEIDs patients see four or more physicians before receiving an accurate diagnosis. Some travel to other states to find a knowledgeable physician.

PANDORA Org worked with sponsors Sen. Slade Blackwell, Rep. Allen Treadaway and Policy Advisor to Senate Majority Leader Michael Ciamarra, all in Alabama, to have the resolution written and passed. Gov. Robert Bentley is expected to sign this resolution soon.

Chopo-Kroger will be speaking at the city of Clay council meeting on May 6 when they will consider passing a proclamation that recognizes May 12 as International NEIDs Awareness Day.

A local PANDORA Org representative has also been speaking to Alabama Rotary Clubs, informing them about NEIDs in a presentation titled “The Other Polio.” ME/CFS was referred to as “atypical polio” and “abortive polio” until the 1950s because the symptoms are similar to polio, and ME/CFS also occurs in outbreaks.

NEIDs are also referred to as “complex chronic diseases” or “chronic multi-system diseases” and include myalgic encephalomyelitis / chronic fatigue syndrome, fibromyalgia syndrome, chronic Lyme disease, Gulf War illness and multiple chemical sensitivities / environmental illness.

The Alabama NEIDs Solutions website has links to the resolution, the flier advertising the St. Vincent's May 7 course and to the PANDORA Org website, PANDORAorg.net.

About PANDORO Org: PANDORA Org is a 501(c)(3) nonprofit organization headquartered in Wyoming, Michigan. PANDORA Org improves NEIDs patients’ lives through assistance, advocacy, education and disease awareness.
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This press release probably deserves its own thread.
 
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usedtobeperkytina

Senior Member
Messages
1,479
Location
Clay, Alabama
Very old thread, but I have news.

The survey turned into a study published online yesterday: http://www.vkingpub.com/Journal/FCM/421.html

After Obamacare went into effect, the hospital system lost interest in creating a center. They did do a fibromyalgia CME course, but then balked on the Lyme one. I was starting to get the run around. And after two years of work, became frustrated at their telling me to find the interested clinician, without giving me any access to their network. Then, when I did find a clinician wanting to be a medical director of such a center, they sent me to meet with the new CEO of that hospital that knew nothing. I was having to make the case all over again. Then no response to emails.

Meantime, I got news of a researcher that does fibromyalgia and ME/CFS research possibly moving to UAB in Birmingham. I worked with him and offered to help him find a clinician to screen his patients and to recruit patients. With that help, and UAB agreeing to his requests, he moved to UAB and brought two other researchers with him. Here is our announcement: http://www.uab.edu/news/focus-on-pa...ch-program-to-combat-chronic-pain-and-fatigue

How very exciting!
 
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