[peppermintpatty]

I hope that this is okay to post. Mods, if not, I apologize. I looked and can't find anywhere saying it's not. I'm especially interested in their sessions geared toward patients.

2010 Neuropathy Summit

Peripheral Neuropathy has reached epidemic proportions in the U.S., impacting over 20 million Americans. Yet, despite the enormous physical, emotional and financial toll this chronic, often painful, and potentially debilitating illness takes on Americans’ health and our health care system, peripheral neuropathy remains one of the least recognized illnesses in the U.S. today.
The 2010 Neuropathy Summit offers a catalyst to change this dynamic and improve the care offered to neuropathy patients. Held in conjunction with our 15th anniversary as the national leading organization bringing help, hope, and healing to the peripheral neuropathy community, The Neuropathy Association is proudly hosting the Neuropathy Summit—featuring back-to-back physicians and patients conferences—in Washington, D.C. on December 3-5, 2010 to build a bridge to a brighter future.

The Summit brings together the stakeholders in the neuropathy community—patients, physicians and health care professionals, basic science and clinical researchers, industry representatives as well as executives from other health care organizations, and policy makers—to advance our collective understanding of neuropathy and fuel momentum for better patient care and for overcoming obstacles preventing access to care, treatments and cures. Because debilitating neuropathic pain is the primary issue for many neuropathy patients, neuropathic pain management will be given special emphasis throughout the Summit.

[Sheltiemom18]

I'd received an announcement of this about a month ago, and it's great for those who either live close enough or who are able to travel longer distances. (AND who are willing to pay the $150 fee that will be charged to patients plus hotel/meals.)

Hoping that somebody who posts at this subforum goes so they can report what's discussed to us. We live in a Cleveland, Ohio suburb and won't be attending.

[Rrae]

Well THIS sure is a sight for sore eyes!

Just knowing that awareness is taking place is wonderful to hear!!

.....oh if only i had mounds of $$$, I would buy complimentary guest tickets for as many PM docs I could afford! I'd even buy them their meals!!

[mrsD]

Sounds hopeful.... and I too would like to see the papers printed up publicly so we can all share after the fact.

Maybe one of the members here of the NPA will do that for us?
Find the links, if they materialize?

I attend conferences sometimes ...the ones that have accredited CE for me. This one does not, or I would have received a flyer.

I can only afford to spend that kind of money these days on certified CE. So I will not be attending. DC is quite a hike for me too.

Many of the conferences I go to, still do not have "prevention" thrusts. They are for new surgical devices to control pain, and typically drugs. Also there might be lengthy diagnostic and statistical analyses. And I expect a paper on IVIG. (the drug companies fund some of these conferences and expect to have their drugs pushed. They also have tables outside with promotional material.)

So I don't expect to see a table for acetyl carnitine or alpha lipoic acid!

[gabbycakes]

Originally Posted by peppermintpatty

I hope that this is okay to post. Mods, if not, I apologize. I looked and can't find anywhere saying it's not. I'm especially interested in their sessions geared toward patients.

2010 Neuropathy Summit

Thanks for the information. I would love to go it's about a 5 hour ride for me. If I can get someone to come with me I just might. Again, thanks for the post

[dahlek]

Is that there appears to be a discreet separation between physican forums and 'patient' forums! Why shouldn't patients BE at physican outlets to see how DOCS talk about patients?
I live near there, but given the big time fees and the limited professional participants of the caliber I'd expect [easily recruited from this region?] I'm disinclined to go... THO MelodyL might get a lot out of it.
Good luck all. - j

[mrsD]

There was a PD conference not too long ago that separated the medical from the patients. There is a flurry of posts on our PD forum in the past about excluding patients from the research etc. I didn't know that this conference is going to divided too!

I get to go the medical ones, and you are right in some ways, --j-- you don't want to hear what some doctors say....sheessh..

One of the most memorable was a Lilly talk, by shrinks for other doctors, etc, when Prozac was newly out. One comment got the biggest laugh...
This was a time when Lilly wanted general physicians to give Prozac out.

A shrink was extolling how wonderful Prozac was compared to TCAs... on and on... Prozac was the first, you know. It was a blockbuster for Lilly, in fact!

Then he cavalierly said..." so when you are confronted by a patient giving the standard "organ recital" don't hesitate to give that patient Prozac". Many many laughed, and I did not. So THIS is how doctors think of us when we sincerely express our discomforts? "Organ recital" ??? I found that degrading.

[strangeloop]

Imagine seeing 30 patients a day fretting over this and that for 20 years. I get why they develop a detached sense of humor about it. Doesn't mean I like it, but what's the alternative? Develop "Compassion Fatigue" or more rarely turn into Mother Teresa.

[dahlek]

BUT my concerns are real! Doctors don't want to 'talk' with patients in any public forum? Because sometimes, they don't LISTEN to patients in the 'private forum' of an office visit. IT IS THEIR BUSINESS AFTER ALL! Then? They have to see those patients more than necessary because they don't do RIGHT the first time?
Where but a conference, could there BE a better opportunity for patients to learn WHERE DOCS are coming from in their 'diagnosis[ses]' or where Docs are coming from in their RESPONSE approach and treatments of patients! There is one BIG void that is growing bigger by the day -And If I were docs? Smarter patients [often written off, due to some 'web educations'?] ask questions they don't want to address due to future liabilities.
That standard line of: This is all that can be done, grin and bear it? Is often NOT all that can be DONE! NOT by a longshot!
YES docs can get numb? BUT? We can with group and outside pressure get them re-sensitized to a degree vis-a-vis diagnosis!
There is a big difference between 'Numb as a fencepost & Dumb as a fencepost'! To date? My experiences have been that 60% are in the first category, 80% in the second.... take that as you will? But docs unwilling to go that other step, when things get worse? And, just up meds that are detrimental overall to quality of life? are definitely NUMB DUMB POSTS! And, you know? I'd loove to have my first [defintely EX neuro] on that panel! How well, do YOU walk on HOT COALS!?
Should some source provide a neutral source of how patients and docs can and should communicate better to shorten diagnosis and treatment times? That would be a super GOAL! One the NA has not decided to deal with.. nor likely to in the future. SIGH! - j

[mrsD]

Well, I think doctors are more comfortable with the idea that PN is a lifestyle disease, and that patients end up with it because of poor habits. (alcohol consumption, overweight leading to Type II diabetes,etc).

But in reality...which they will not and cannot face, doctors have been AGENTS in causing PN in their patients. Prescribing drugs that are neurotoxic --statins, fluroquinolones, etc.
What doctor is going to admit to a patient that he/she caused their neuropathy? (the only ones that I think will do so, and reluctantly, would be the oncologists for chemo and HIV doctors)
I wonder how that conference will go? Will they admit their involvement, or blame the patient?

There has already been a study done showing doctors refuse to even acknowledge that statins have any side effects at all!
http://medicationsense.com/articles/...cts012108.html