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

@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.

Hi @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.

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

I’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.

Snagydude, 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.

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.

Thanks for detailing how clinical trials work. I guess I am just reflecting my fears about medicines these days as I still think that the methylprednisolone that I took for a sinus infection may have acted as a trigger to my getting PN. Now I am reluctant to take nearly anything and am very into holistic approaches. While I am still disturbed about the muscle wasting that I experienced, I am kind of lucky in that my PN is not painful--my neurologist said I had a mild case. Pain is difficult to deal with and while there is talk of managing it--that is easier said than done. And, of course, I look back to the days--only yesteryear, when I did not have to deal with any of this. Seems like it was a cascade of bad happenings.

I have to comment on this fear of medications. I like evidence based decisions. If, for example, methylprednisone did trigger your PN, that means you were destined to “get” PN anyway. Millions of people take steroids and do not “get” PN. So there is no correlation between that drug and your PN. For some reason you developed PN around the time you took the steroids. It’s just a coincidence. So choosing to forego all pharmaceuticals because of this coincidence is just that - a choice you have made. It is not evidence based in any way.
I have relatives who suffer needlessly because of a belief that medications are somehow bad, or that taking them is a sign of weakness. In fact, many people with many illnesses are able to lead BETTER (not great, but BETTER) lives because researchers have dedicated their lives to constantly searching and seeking to ease suffering. The scientists in the lab do not benefit financially from this. They are just doing their job every day, with passion. They could have chosen any other field, but they chose to work with the miracle of pharmaceuticals. I am SO VERY grateful to them for helping me get through every day with less pain.
There are no awards given in this life for choosing to suffer. It is each person’s choice. But I can’t live my best life, AND help other people ( which is something I try to do every day) if I am incapacitated by pain and depression.
Thank God for medications.

Julbpat, I do not believe that my reaction to the Medrol was over the top and I am not saying that steroids should be banned. They have helped plenty of people--my brother and friends included. But due to the reaction I suffered--I thought it was nearly the end for me--I choose not to go near them again. I even had a reaction to a Salonpas pain patch that I tried for lower back pain. Some people just cannot tolerate meds the way other folk do. It is important for one to do research to determine whether a medicine is okay for them-it is not a one-size fits all world. and we must be our own advocates. I am happy for anyone who can get out of pain-medicine, PT, acupuncture, supplements, diet, etc. Maybe the Sinatra song is appropriate here: " I did it my way."

John, I so appreciate how you elaborated on snagydude 's points which were well received on their own from my point of view. As always you are a wealth of information. The more we know, the better. Strength in numbers.