View the Post on the Blog[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.)
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Hospital Wants Input From Chronic Fatigue Syndrome and Fibromyalgia Patients on Possible NEID Center
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At this point, 593 have taken the survey. (Thank you everyone) 8.9% chose "other."
Tina
Tina
Whilst based in the UK, and I apologise in advance, but I felt I had to ask...
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.
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.
And I think they should have tacked 'metabolic' in there. 
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
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
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.