Hospital Wants Input From Chronic Fatigue Syndrome and Fibromyalgia Patients on Possible NEID Center

[caption id="attachment_13232" align="alignright" width="250"] An Health Services provider is considering opening up an NEID Center to serve people with CFS, FM and Lyme disease[/caption]

A Health Service provider may want you (gasp)! Yes, it's true. After all the cold shoulders and denials of coverage, etc. a health services system in the Southeastern United States (to remain unnamed) wants to determine whether it makes sense for them to open an neuroendocrineimmune center focusing on ME/CFS, fibromyalgia, lyme disease, etc. To that end they're asking you to participate in a survey.

How did this turn of events come about? Tina Tidmore, a journalist, advocate and person with CFS, came into contact with a politician who has one of these disorders and knows the CEO of a health care/hospital system. He arranged for Tina, the politician, a nurse with one of these disorders, the CEO and an operations manager to met to talk about the health services system, ME/CFS and its allied disorders. The CEO took interest and decided to launch a survey with PANDORA to help determine if an NEID center was a viable option for them.

When I talked to her Tina emphasized something Marly Silverman, the founder of PANDORA, has been saying for years; that we significantly increase our power and effectiveness when we advocate for these disorders together. Separately we don't have the numbers to attract much interest; ME/CFS is too small for a hospital to open a CFS treatment center but when you throw FM and Lyme in there - you start generating some numbers a CEO might take interest in. Tina noted that Dr. Klimas' Center is studying Gulf War Illness and ME/CFS and the new Canada Center with Dr. Bested is focused on Complex Chronic Diseases (ME/CFS, FM, Lyme Disease).

The hospital wants to determine if a Center would be financially viable for them. They're shooting for a 1,000 responses from the Southeast and across the US. (Be sure to answer the question about how you pay based on how you pay for most of your costs; ie try not to answer 'Other') ….

A hospital based NEID program would be a very good thing to have, particularly for the folks in the Southeast who have few options. If you live in the US please take this short survey. If you have a child with one of these disorders please take the survey as well. (If you are from Alabama and have taken a similar survey please take this survey as well.)

Click Here to Go To the Survey​

View the Post on the Blog

 

Note that the survey appears only to be relevant to those in North America.

 

Note that the survey appears only to be relevant to those in North America.

Yup, and fair enough because they presumably want to get some idea of market there. But it would be good news for all of us down the road - if a specialist centre is set up, we can all benefit from what they learn.

 

If a center like this is financially successful, it will be easier to sell the concept to other hospitals.

Tina

 

This survey only takes about 5 minutes--seems like a good way to use 5 minutes!

Sushi

 

Very easy, simple survey. No tricky or personal questions. Didn't take more than a couple of minutes.

 

yes, very short.

Now why would we want to trick you? LOL

Tina

 

Tina noted that Dr. Klimas' Center is studying Gulf War Illness and ME/CFS and the new Canada Center with Dr. Bested is focused on Complex Chronic Diseases (ME/CFS, FM, Lyme Disease).

Correction. Tina noted that the Clinic in B.C. is "focused on Complex Chronic Diseases (ME/CFS, FM, Lyme Disease).” But if you follow your link, you'll notice that our Clinic instead uses nomenclature consistent with the ICC:

This clinic is for people who suffer from a group of complex chronic diseases which include but are not limited to:

• Myalgic Encephalomyelitis
• Chronic Fatigue Syndrome
• Fibromyalgia Syndrome
• Lyme disease

 

Thank you, Ember.

Tina

 

They ask if you live in Alabama, or one of the contiguous states, so that's likely where they want to open.

 

yes. Madie, that is true.

 

Very cool, just filled it out. Thanks so much Tina!!

 

Been there, done that yesterday. It was simple. It was quick.

One of the questions is if you have to fly to get to a health care provider. They may be wondering how many people beyond the contiguous states might travel that far. I think the more feedback they get, the better.

 

Did it yesterday too. Bumping it for others to see.

 

Thanks, we have 524 who have responded. Spread it around, especially to those in the Southeast. I have found that the word "survey" is not popular. Maybe it is better if we say, "Please answer these five simple questions."

People think of surveys as being long with complicated, poorly-written questions.

Remember, the question on how you pay is how you pay for most of those services. Avoid "other" if you can.

 

Thanks, we have 524 who have responded. Spread it around, especially to those in the Southeast. I have found that the word "survey" is not popular. Maybe it is better if we say, "Please answer these five simple questions."

People think of surveys as being long with complicated, poorly-written questions.

Remember, the question on how you pay is how you pay for most of those services. Avoid "other" if you can.

Here's the link, if you need it.

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

When you share with others, be sure that you url address you share ends with "start."

 

Just five questions....very easy to do. Whoever stated a successful center in one state could very well mean successful Centers elsewhere - so wherever you are in the US - please fill out the survey!

 

This is a breakthrough in its own right. Good news!

Let's hope any new clinic like this allows phone consultations if lab work is in place.

If it opens, they will be busy! That would mean branch centers opening up...

 

Thanks, we have 524 who have responded. Spread it around, especially to those in the Southeast. I have found that the word "survey" is not popular. Maybe it is better if we say, "Please answer these five simple questions."

People think of surveys as being long with complicated, poorly-written questions.

Remember, the question on how you pay is how you pay for most of those services. Avoid "other" if you can.

Hi Tina,

Curious about why to avoid "other" in the payment for services section. It was the only one that fit for me as my means of payment is kind of equally divided between two of the choices. I chose "other" and then wrote in an explanation. Will that work OK for the purpose of the question?

Sushi

 

We'll make it work. The question asks which method for most or all. So, if it is equally divided, then I guess "other" is for you.

The "other" will not be in the percentages of each answer. I will have to put an explanation of the "other" answers in my report. The answers that are already provided generate a scale chart of percentages. With 1,000 respondents, I have to go through and figure out all the "other" answers and give an explanation, but they won't show in the scale chart this survey will generate.

Tina