Patient Advocacy - an update

Patient advocacy from the front lines:

To all my RA friends: Getting better treatment for Rheumatoid Arthritis and chronic pain is hard and the pharmaceutical treatment often has a lot of side effects.

I have had RA since the age of 19. I've been disabled and was given up by the health care system, but with hard work, some treatment, dietary changes and maybe a bit of luck, I've been in deep remission for many years. I am now able to use my experience to help others. For the last 10 years I've worked for the Norwegian Rheumatics Association - where we lobby for better treatment, more research and access to rehabilitation, benefits etc.

In my job I work closely with scientists to apply for funding for new projects. The scientists working on new projects have to have support from patients in order to get funding now, after studies have shown that 85% of all research is wasted. Over the years I keep seeing that the doctors & scientists are unwilling to do research that would actually make any big difference. They keep doing the same kind of studies.

"What drug works better to lower inflammation a little bit? Drug X og drug Y?"

Then they spend 6-10 years and several million $$ on a study to see if that drug helps 2% more than the last one. Maybe it does, maybe it doesn´t.

--> Progress is SO SLOW!!!

After getting tired of seeing this I decided to turn the tables. I went straight to the research council, and the Ministry of Health here and said that we want money to find out what the PATIENTS want more research on. As a chief advisor of the biggest patient org on rheumatic illness in Norway, they listened to me. I wrote an application for a James Lind Alliance process, to do this in a structured way, and we got funding.

In Spetember 2022 we finished the project, with 5346 patients from 5 different patient orgs participating. The resulting Top-10 list of questions that the patients want more research on was astounding!

WE want more research on how to PREVENT rheumatic illnesses. We want to know how chronic pain affect patient's general health. We want to know more about gut health and rheumatic disease. Why does RA flare - why do these diseases vary so much in intensity?

We want less funding for new programs on positive psychology and empowerment programs and more funding for finding root causes. This was actually said because lately a lot of research has been focused on positive thinking - after health politicians started grouping musclo-skeletal disease with anxiety and depression (seriously, they DO!).

Long story short: I presented this project at the Research Council, who funds new research, and for all the scientists at the centre for musclo-skeletal health. The Research council loved it, and the scientists were quite taken aback. They seemed shocked that the patients would come with their own demands, not just nod and smile and gratefully accept whatever was offered.

We are now working to get this project published in scientific journals. The James Lind Alliance method is extremely thorough and is the gold standard of patient involvement in research - it's been extremely interesting to learn about it.

I just wanted to share this with you - my fellow patients. Often it feels like we are alone, fighting our pain and fatigue without anyone knowing what we are going through.

I want you to know you are not alone.

We are so many - all over the world - who are fighting for you

There are exciting things happening in research on rheumatic disease, if we stand together, we can make these changes come faster.

World movement for better pain treatment

Have you heard? There's a global movement going on! 


Pain specialists and leaders of medical organizations from all over the world got together in Miami just two months ago, to sign this declaration, the Declaration of Miami - to promote better pain treatment all over the world, and to guarantee pain relief as a human right!


Here is the basic text of the declaration:


Presently, there is still limited access to adequate treatment of acute and chronic pain in many parts of the world. Governments and even healthcare professionals are not sufficiently aware of chronic pain as a health problem. Many healthcare professionals are not educated and familiar with best practice pain medicine. 
It is the right of any human individual to have easy access to adequate pain management. There is a need for generally available information about proper options for pain relief and it is the obligation of governments and healthcare systems to provide financial, personnel, and structural resources to achieve these goals and to guarantee adequate pain management as a human right.

What can you do? 

1. Inform your physician!


2. Sign the petition at change-org here and spread the word to your friends, family and fellow patients.

Video interview - coping with chronic pain

I stumbled across this great video interview, where Jennifer Grey shares her experience on coping with chronic pain. She says som every useful things about treatment, structuring your coping mechanisms and how to communicate with your doctor to get the best help possible.

She recommends using the Three Rs :

• Research - Get as much information about your pain as possible
• Record - Keep a pain journal, find out your pain patterns & triggers, how does your pain act & react?
• Rehearse - Practice talking about this before going in to your doctors appointment

Raise awareness!

I am in the process of starting up a project to increase awareness about chronic pain, and need to get in touch with individuals based in Norway who can participate by sharing their experiences living with chronic pain.

For my norwegian readers, please read the text at diagnostisert.no and see if this is something you could be interested in - or if you possibly know someone who can participate.

Please share and spread, the more people we can connect, the better!

Hope for chronic pain patients

I've previously written about how chronic pain changes the brain and especially effects memory centers of the brain. Now new research has shown that not only is this pain treatable, but these changes in the brain can actually be reversed, I read a great post on Bad Boy Science, here is an excerpt:


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"... chronic pain is often defined as pain that lasts longer than the expected time of healing.

One of the reasons pain persists is that the brain re-wires itself to change pain perception. This is known as ‘Central Sensitization’. The changes are actually significant enough that they can be detected through brain imaging! ¹

It’s almost like a ‘pain memory’. Like an over-reaction of your brains job to protect you from danger by giving you pain. It can make safely moving in a certain way cause pain, because your brain remembers that being a painful movement before.

But don’t let this worry you. Fascinating (and exciting) new research has shown that not only is this pain treatable, but these changes in the brain can actually be reversed!

(...)

Hope for People with Chronic Pain

This is good news for people who used to think: “well <insert pain treatment here> only works temporarily and then the pain comes back, so what’s the point?” There is a point! It can eventually become permanent relief.

The message is this: hang in there. The worlds scientists are hard at work figuring out the brain. People are beginning to appreciate pain and it’s complexity.

For now, do whatever you find helpful for your pain.

Don’t be afraid of pain. Keep moving stay active. Reduce stress and anxiety in any way you can. Don’t let pain be the first thing on your mind. Enjoy your life.

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Read the whole article here!