I'm angry about peripheral neuropathy, let's take action.

Posted by snagydude @snagydude, Aug 2 7:39am

I've received both positive and negative comments about posting on my lessons learned about PN. My comments have come from the dark side of the situation. We have too few specialists and too few research dollars being spent on our problems. We number in the millions and yet our needs are not being met. I have a letter that I've written that will be sent to all my congressional people in Tennessee. I encourage you to copy and modify the letter and send it to all the congressional members in your state. I'm taking action and encourage you to do so. If you belong to other forums please encourage them to participate. I suggest that you send the message from your personal email.

Dear Congressman/Woman

As an active voter I'm upset at the direction our country is taking on health care. Particularly I'm very upset at the money being spent on research and care of those suffering from peripheral neuropathy (PN). Our numbers are very great as is the suffering associated with this disease. We number in the many millions. Please stand up and take notice on this silent population.

This disease has many forms. Look at your voters and you will see many who have difficulty walking. For each one you see there are many who are homebound and in great pain. We are a silent and largely neglected community.

Much is spent on research and care for cancer, heart disease and other chronic conditions. This is money well spent. BUT where are the research dollars for PN?

I am very disappointed in services provided to our growing numbers. There are many areas of research that need to be explored beyond our simple pharmaceutical approaches. We need a caring congress to reach out and recognize our situation. We are a needful and growing ANGRY voting group in need of congressional action.

There are many problems in our country. We are one of many. At this time it is we look for champions to emerge for our cause. As a voter, I will be following your actions and positions on many issues. I fully expect you and your staff to become more aware of PN and take action on this issue of great need.

Interested in more discussions like this? Go to the Neuropathy Support Group.

Profile picture for mikead63 @mikead63

Thank you Volunteer Mentors Sue & John!! You have helped us in so many ways and what you have just provided is excellent information!

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Agree.

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Profile picture for Sue, Volunteer Mentor @sueinmn

You asked "participating in clinical trials--a good one--but takes guts--what if the trial produces adverse results? Then what?" I feel 2025 clinical trials are a lot better managed than 1959 trials...when I was a "fluoride kid" being tested at the local low-income dental clinic in a settlement house! About 40 years ago, one of the authors of that study said the requirement was to "notify participant" but they didn't have to involve the FDA until they were seeking final approval!
Here is a snapshot of the current clinical trial protocol from
https://pmc.ncbi.nlm.nih.gov/articles/PMC9293739/
First, there is a pre-clinical phase, without human research subjects (90% of trials end here.) Clinical trials start SMALL and Phase I trials enroll fairly few, closely monitored volunteers (33% end here). Any serious adverse effect results in immediate cancellation of the trial. At the end of Phase I a detailed review of results and risks is submitted for review before Phase II can kick off.
Phase II is longer and involves more people, so it lets the researchers see a wider range of effects, positive and negative. Again, serious adverse effects end the trial. (50% of remaining trials end here).
Finally Phase III may come, with a broader cross-section, to see if it is safe enough to be released (40% of remaining trials end here).

Recent reports show that about 2% of trial drugs & treatments make it through all 4 phases, and then the FDA has the option of approving or denying and the company has the option of marketing or dropping.
By Phase I, it seems a pretty safe thing to try - you always have the option of dropping out.

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Much appreciated.

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