Further Follow Up From Last Poll Re: Services Offered

[Ernie]

Hi,

If we had the money and other resources: A get together once a year like Dynakids, references to research papers explaining why we use certain meds (so that we can "convince" our doctor that it is OK to use that drug, ie Procrit, a doctor specialising in dysautonomia to answer our questions on-line.

[Eillyre]

Hi all!

I know I?m hopping into the conversation a little late (enjoying the read! ), but just wanted to add a little thought. I know that finances are a limiting factor for a number of dysautonomia awareness ventures and that my suggestion is by no means a freebie, but it?s something to think on. It's also not specific to DINET-offered services, which I think is what you were originally requesting. I'l go ahead and mention it anyway, though.

I?d love to see a course on dysautonomia designed for Continuing Medical Education (CME). For those of you not familiar with CME, I?ll explain briefly. In New Jersey (and some other states as well), doctors are required to complete 50 credits of CME each year to retain licensure; some other medical staff (PAs, NPs, etc.) are required to complete some amount of CME to retain certification also. Credits may be earned in a variety of fields of medicine by attending accredited conferences and/or passing accredited tests/courses. For example, a doctor might earn 15 credits for attending a major conference on sports medicine. The credits may be offered by a variety of sources such as the CDC or New England Journal of Medicine but all must be approved by the Accreditation Council for Continuing Medical Education. My dad took a free mini-course offered on-line by the CDC last year discussing CFS for a credit or two.

I would suspect that a number of doctors would be more motivated to read about and study dysautonomia if they knew that they were earning credits at the same time. I would imagine that ?endorsement? by the CME Accreditation Council wouldn?t hurt dysautonomia?s credibility either.

It?s not something that just anyone could put together, which made me hesitate about posting the suggestion. You would have to have competent medical personnel work on actually putting it together to ensure approval by the CME council and some amount of funding (I really have no sense of an accurate estimate ). That said, I would still love to see it happen! Would any of Dr. Grubb?s associates or DINET-advising physicians be interested in looking into the idea? We could furnish them with all sorts of ideas for course content!

My dad just received an ?audition? CME course on CFS designed by CFIDS of America & the CDC (goodness, what an alphabet soup that is! ). I haven?t had time to carefully peruse it yet, but it looks like the course has definite promise from what little I?ve seen so far. I?ll list some of the topics below. I'd love to see a dysautonomia equivalent in circulation!

It?s just a thought! Thanks for introducing this stimulating topic, Pooh, and thank you to everyone responding. I?m finding the responses interesting.

Angela

Some topics from the CFS course Table of Contents:

1. Overview of CFS (framework for understanding CFS, recognition and diagnosis)

2. Possible contributing factors for CFS

3. Myths surrounding CFS

4. Case definition

5. Diagnosis (differential diagnosis & exclusionary conditions, comorbid conditions

6. Management of CFS (supportive treatment, symptomatic treatment)

7. Impact of CFS (on patients, family & friends, employers & coworkers)

8. Prognosis

9. Disability issues

10. Case studies

11. Assessing and documenting impairment in CFS

12. Energy conservation in CFS: practitioner guidelines

13. Cognitive behavioral therapy fact sheet

14. Reproductive and sexuality issues in CFS

15. Resources

[Sophia3]

I believe NDRF is in the process of doing such a CME...at least Linda posted this on the boards recently if I remember correctly. **EDIT** Yes as part of their 10 year anniversary this was announce weeks ago.

FYI, I heard in an email months ago it is a VERY EXPENSIVE $$$$ thing to produce.

Great idea but the price nearly knocked me out when I got an email about it!!