If you are reading this article, you probably live with chronic pain yourself, are relative to someone who does, or work as a healthcare professional in the field of pain. Therefore, it might not come as a surprise to you that the treatment of chronic pain has a low health professional status and is being neglected in the prioritizing of health politics. Consequently, the level of organization, education and treatment in the area of chronic pain is very low compared to other costly and prevalent conditions.
To make a change necessitates strong organisations, I would argue. We need organisations which can strengthen the cooperation, exchange of experiences and ideas between patients, professionals and countries and create strong stakeholdership to bring chronic pain on the political agenda.
I believe EFIC – The European Pain Federation to be one of these organisations. A great example of their importance is the big scientific pain congress every second year. The scientific value, networking and ideas from this venue cannot be underestimated.
This is also why I am pleased that I recently participated in the 11th EFIC Congress which was held in Valencia, Spain. There, I participated on behalf of FAKS -The Danish Association of chronic Pain Patients, which is one of the founding members of Pain Alliance Europe.
Preparing for the Congress
Living with chronic pain, It can be quite a challenge to travel to another country and participate in a conference with a massive program and a multitude of people and inputs. In consequence, I traveled to Spain in due time to combine my voluntary work with a little vacation under the sun to gain the resources needed.
I also spend a lot of time in advance acquainting myself with the scientific program and picked out the talks and scientific areas of interest, and I planned to put in breaks between each session. This way, I had time to rest and prevent the pain from getting the better of me.
Extracts from the Congress
In order to give you a taste of the scientific content and still keep my article relatively short, I have chosen only to mention a few of the presentations and scientific fields of research.
Pharmacogenetics – medicine based on your genes
Next time you go to the pharmacy, imagine that the pharmacist can look up at his or her computer and find how your body responds to the pain medication you are taking and knows exactly what the optimal dose is. This may sound as something out of a sci-fi movie, but the Netherlands has, in fact, introduced a so-called medical passport. This is based on genetic information of how pain patients respond to certain pain medicine.
In order to understand this matter better, I will introduce you to the concept of genetic polymorphism. To put it briefly, this describes variations in our genes that for example code for specific enzymes and cellular functions. This way, variations in the pairing of nucleotides that make up our genes affect the way the medicine works in our body, and how our body affects the medicine as it is absorbed, distributed, transformed and excreted. Genetic polymorphism can lead to differences in what might be the optimal dose of a specific type of medicine for you and me. It can even result in medicine, which works on you, might not work on me at all.
However, this knowledge is put very little into practice today which might appear unethical to you at first glance. But this is probably due to the fact that we need more research to prove the therapeutic benefits on humans in real life. You also need to remember that the code of our genes alone does not decide the effect of the medicine. Also, the environment and the way genes are being expressed so-called epigenetics plays an important role.
Nevertheless, I hope that the future will bring more of this kind of tailored medicine with a personalized approach in the field of pain medicine.
Exercise, physical activity and pain
Certainly, you are familiar with the message of how important it is to do exercise and to be physically active. You may even have a guilty conscience over not being active enough. Anyway, a massive amount of evidence and experience shows that physical activity is necessary to stay healthy and maintain a satisfactory degree of functional abilities and quality of life. This is also why I was happy to discover that the congress had a series of talks about exercise and chronic pain. I heard a talk with the Danish researcher and physical therapist Henrik Bjarke Vægter from University of Southern Denmark.
In his talk, Henrik mentioned how training broadly speaking affects healthy people and chronic pain patients differently in their ability to achieve a pain-reducing effect and the risk of increasing pain after exercising. These mechanisms are called exercised induced hypoalgesia or hyperalgesia respectively.
Henrik also mentioned the very important issue of listening to every single person and adapt exercise to the mental and physical abilities of that specific person. As most of us already know, this is vital to achieve and sustain motivation and make physical activity and training a habit of our lives. Sadly, it is a whole different matter to implement this concept into the everyday practice of the healthcare system which comes with many obstacles.
On the matter of exercise, it is also worth mentioning that EFIC has made the campaign “On the move” particularly to raise awareness about the importance of exercise and movement.
Chronic pain in children and other vulnerable groupsOn the way around the congress, I came across an exhibition concerning chronic pain in children. Every year, The Portuguese Association for the Study of Pain holds a drawing contest about pain in children “ I’m going to draw my pain“. The goal of this contest is to increase awareness of chronic pain in children, and how much can be improved in the pain treatment of children with more knowledge and cooperation between the parents, the healthcare professionals and the children. On this matter, I cannot help but mentioning that The International Association for the study of pain IASP in 2019 has put a focus on specific groups of vulnerable pain patients. One of these groups are in fact children, the others are elderly people, torture victims and pain patients with cognitive and psychiatric illnesses. The common factor of these people are that they are not as able to speak up for themselves, and so they are particularly at risk of not receiving adequate pain treatment.
At the EFIC2019 pain congress, a whole track was dedicated to topics with pain patients in focus. In these sessions, I participated alongside other people with chronic pain some of which were already familiar faces from Pain Alliance Europe.
In a workshop, we addressed the topic of patient education with the purpose of finding the best practice in educating patients to educate other patients. Our goal was to come up with ideas and proposals for future initiatives to strengthen inclusions on patient to patient education. As always, it was interesting and informative to listen to the perspectives, ideas and experiences of other people in Europe.
I know the matter of patient education to be very important myself. You see, living with chronic pain for over 20 years has taught me that pain medication can only do so much. This leaves you with the necessity to master your pain, resources, work and social relations in a more sensible and tenable way. This is why I believe that patient education and coping strategies are so vital. Moreover, these skills also play a role in maintaining one’s sense of positive identity by keeping as much independence and freedom as possible. This is why I think the education committee of EFIC is doing the right thing by having a patient education group.
Lastly, I would like to mention that I paid a visit to the Pain Alliance Europe booth. And even though it has been some years since I’ve participated in any of the PEA meetings, I felt welcome right away. I had a chat about what’s been going on in PAE and my own organisation, and many of the obstacles we all come across in our voluntary work.
Hopefully, I will have the time and energy to once again participate in future general assemblies and events in PAE.
Best regards from
Lars Bye Mølle