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

August 19, 2012

Posted by Cort Johnson

An Health Services provider is considering opening up an NEID Center to serve people with CFS, FM and Lyme disease

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

 

 

24 comments

{ 24 comments… read them below or add one }

Snow Leopard August 19, 2012 at 9:48 am

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

Sasha August 19, 2012 at 10:30 am
Snow Leopard

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.

usedtobeperkytina August 19, 2012 at 10:44 am

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

Tina

Sushi August 19, 2012 at 10:50 am

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

Sushi

SOC August 19, 2012 at 11:11 am

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

usedtobeperkytina August 19, 2012 at 11:17 am

yes, very short.

Now why would we want to trick you? LOL

Tina

Ember August 19, 2012 at 11:23 am
Cort

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

usedtobeperkytina August 19, 2012 at 11:25 am

Thank you, Ember.

Tina

madietodd August 19, 2012 at 11:40 am

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

usedtobeperkytina August 19, 2012 at 11:51 am

yes. Madie, that is true.

SpecialK82 August 19, 2012 at 1:46 pm

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

Little Bluestem August 19, 2012 at 10:25 pm

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.

Nielk August 20, 2012 at 6:02 am

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

usedtobeperkytina August 20, 2012 at 9:29 am

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.

usedtobeperkytina August 20, 2012 at 9:30 am
usedtobeperkytina

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."

Cort August 20, 2012 at 9:44 am

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!

GracieJ August 20, 2012 at 10:05 am

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…

Sushi August 20, 2012 at 12:26 pm
usedtobeperkytina

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

usedtobeperkytina August 20, 2012 at 7:41 pm

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

usedtobeperkytina August 20, 2012 at 7:44 pm

At this point, 593 have taken the survey. (Thank you everyone) 8.9% chose "other."

Tina

Firestormm August 21, 2012 at 9:26 am

Whilst based in the UK, and I apologise in advance, but I felt I had to ask…

whether it makes sense for them to open an neuroendocrineimmune center focusing on ME/CFS, fibromyalgia, lyme disease, etc.

Does it 'make sense' to invent terminology to this extent? It was interesting in the meeting I attended earlier today, that the subject of collective classification arose.

The commissioners you see were talking (again) about, basically, bringing similarly treated conditions together. They used the phrase 'complex conditions' and I said, that does it really matter what you call it?

It evolved into what I would term 'an unnecessary and pointless' period of discussion (especially as we were not afforded much time).

It's rather like the term 'neuroimmune'. Is that even a real medical term? Does it have to be? What's the point? Would it change?

Do we need to invent terms? Heck of a name for a medical centre – don't you think?

Sorry. I just thought the above was 'odd' and it seemed relevant to mention it.

Little Bluestem August 21, 2012 at 9:57 pm

And I think they should have tacked 'metabolic' in there. ;)

usedtobeperkytina August 21, 2012 at 10:13 pm

Firestormm, thank you for your comment.

I appreciate your discussion with others about bringing these illnesses together. The British Columbia Center is Complex Chronic Diseases. Also, another descriptive term would be chronic multi-system diseases.

The thing about neuroendocrineimmune diseases is that it exists in the medical literature, it isn't just a term pulled out of the air.

http://www.nejm.org/doi/full/10.1056/NEJM199310213291708

http://www.ncbi.nlm.nih.gov/pubmed/21281334

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2562609/

http://www.annualreviews.org/doi/abs/10.1146/annurev.iy.13.040195.001515

The name change working group suggested this name: http://www.ncbi.nlm.nih.gov/pubmed/15189800

http://www.ncbi.nlm.nih.gov/pubmed/21153213

However, the other two terms will work also. If this hospital embraces the concept of a center for these diseases, I'm sure they will decide what to call it. In the mean time, having the "NEI" name helps me emphasize these are system dysfunction diseases, when talking to these docs about them.

Tina

Firestormm August 22, 2012 at 3:35 am

Thanks for taking the time to reply Tina and I appreciate the cited research. My concern (labelling issues aside generally for the moment), is that even 'complex diseases' can embrace a great swath of diseases. As can neuroendocrineimmune if you think about it. And I am not sure that bringing these disparate terms together seeking to embrace the particular diseases you have and excluding all the others that might apply, is necessarily the best way to proceed. But I appreciate your reply.

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