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I'm angry about peripheral neuropathy, let's take action.
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.
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@snagydude & everyone - I too have an under-researched, incurable disease called Bronchiectasis, which leads to accumulating lung damage and susceptibility to devastating infections. The first disease-modifying medication is about to be released after many years of research and development. A few years ago, new antibiotics were added to the arsenal for treating the frequent infections. Many of our Connect members participated in the clinical research trials to make this happen.
How to take action today -
Check out clinicaltrials.gov Search for peripheral neuropathy & filter for open and/or recruiting trials from the check boxes. (Hint there are 10 pages of trials just starting all over the world.)
Sign up for any trial for which you are eligible, this is how research gets done!
Post links to trials on your group so others can see them and sign up if eligible.
Join one or more of the organizations supporting peripheral neuropathy care and research. Read their messages and get involved as requested. Participate in their support groups, panels and Webinars to get the latest information.
Neurologists get notifications of upcoming trials. Tell yours you are willing to participate in them.
Just a few ways to take action that may have a more rapid and direct impact than writing to your legislators, who are currently fighting to KEEP what funding already exists, with little hope of expansion.
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19 ReactionsHi @snagydude, I definitely can relate to where you are coming from but I am not sure that Connect is best forum to plead with members to take action. The purpose of Connect is to meet other members with similar conditions and symptoms and learn from their experiences what has helped or might help provide some relief. That said, I do agree that all of us with PN that can get involved with and/or support research. While it may not help us directly, it may help others in the future. I've participated in quite a few different studies for other conditions and did register with Foundation for Peripheral Neuropathy using their patient registry listed below.
To your point of starting this discussion, there are a lot of great suggestions and tips on the Neuropathy Action Foundation:
-- Advocacy is Empowerment: http://www.neuropathyaction.org/advocacy_is_empowerment/index.htm
I would rather have patient organizations leading the charge and not my representatives in Congress. Sad to say but we as PN patients are large in number but so are other life threatening conditions (just my humble opinion). I do personally support the Foundation for Peripheral Neuropathy and contribute when I can. They have a lot of ties into research with a few listed here. Neuropathy Commons is another good organization but they only list their researchers and not current projects (that I could find):
-- Why PN patients should participate in the PNRR: https://www.foundationforpn.org/research-registry/
-- Current Research: https://www.foundationforpn.org/current-research/
-- IMAGiNe Study: https://www.foundationforpn.org/imagine-study/
-- Research Registry for Patients: https://www.foundationforpn.org/research-registry/
-- Research Registry for Researchers: https://www.foundationforpn.org/research-registry-for-researchers/
-- Clinical Research Training Scholarship: https://www.foundationforpn.org/clinical-research-training-scholarship/
-- NeuropathyCommons.Org Research Team: https://neuropathycommons.org/research/directory
Hoping each new day is better and better for you.
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15 ReactionsThank 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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7 ReactionsI’d be a lot more excited if they could cure the common cold. It seems to me that medicine hasn’t “cured” many things. They have figured out how to deal with or treat a lot of symptoms, but cure is a strong word. I’m not saying you said they could find a cure. Maybe you are hopeful for a magic pill that could alleviate some of the symptoms of neuropathy. I’m all for that. Although it seems every pill we take these days leads to side effects that lead to another 2 pills and so on. Big pharma loves the USA. We take way more pharmaceuticals than any other country.
I do think antibiotics have helped a lot, and I’m living proof that orthopedic surgeries have prolonged many active lifestyles, but when it comes to disease, viruses, cancer, and god forbid brain and nerve issues, I don’t think they have figured much out. Heck, I’m still waiting for someone to mimic human cartilage. Although, that would probably kill the medical implant industry though so it would never make it to market.
I would imagine they have spent billions on many diseases like ALS and still have no idea why it happens or how to cure it. I’m not saying we should stop trying. I’m just not very confident that throwing millions or billions of dollars has or will have much success.
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3 ReactionsSnagydude, Thanks for drafting this letter as a model for possible pressure on our legislators. It is too bad that the media does not focus on this as an issue for people to rally around. Instead, it is in the grips of Big Pharma. As per Sue's suggestion on participating in clinical trials--a good one--but takes guts--what if the trial produces adverse results? Then what?
They just came up with a new treatment for RA--a neck implant. So, the scientists, researchers and physicians are at work on autoimmune diseases--some treatments may be applicable to other diseases that have an autoimmunity component.
And John-Mentor, thanks for putting out plenty of information to help our group.
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1 ReactionYou 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.