Prof. Aiden Haghikia
Lifestyle factors: something can be changed
One third genes, two thirds environment: This is how the causes of some neurodegenerative system diseases such as Parkinson’s, dementia and multiple sclerosis, most scientists today agree on this, according to Prof. Aiden Haghikia from Magdeburg. Nothing can be done about the genes, nor about some environmental factors such as viruses (EBV and human herpes virus). But it certainly has to do with the lifestyle factors, for example
- Smoking
- alcohol or
- Nutrition.
You often hear: “Never smoked and still got MS.” This is probably true of most MS sufferers. Smoking is just one of many factors. In any case, studies have shown that smoking multiplies the risk of MS, especially in connection with the gene HLA-DRB 1*15. Younger MS sufferers in particular could also benefit from stopping smoking in terms of MS progression.
Diet: not a side issue with MS
Fats or fatty acids play a major role in multiple sclerosis. As early as 1952, a Scandinavian study showed that MS risk increased from the coast towards the interior. The then daring theory: The lower fish consumption is to blame. We now know that there is something to it. With all awareness of the influence of diet on MS, according to Haghikia, one must warn against one-sided diets, which are also repeatedly advertised.
However, various studies have shown that a primarily vegetarian diet with little meat, little fat, little carbohydrates and little sugar has a positive effect, both motoric as well as non-motor. This is made possible, among other things, by the recently discovered gut-brain axis (immune cells really migrate from the gut to the gut). CNS).
A clear “yes” to propionic acid as an add-on
Fat is not just fat. “Unhealthy fats” play an important role in many diseases, such as arteriosclerosis and some cardiovascular diseases. Everyone knows “high cholesterol”. In fact, short-chain fatty acids fuel the good regulatory cells in us, while long-chain fatty acids fuel the inflammatory cells. In MS, it is mainly a short-chain fatty acid that is, to a certain extent, neglected, as was only seen in a study in 2020: propionic acid.
But what is hen, what is egg? Does MS cause less propionic acid in the body as a side effect, or does a lack of propionic acid make MS worse? In fact, the microbiome of MS patients is composed differently than that of healthy people. As pragmatic doctors, Haghikia says, Prof. Gold, Prof. Linker and he would have thought a few years ago: The deficiency can be easily reversed. Propionic acid is commercially available and used to be added to bread, so worth a try. Without further ado, the researchers started a self-experiment (Haghikia still takes 500 mg of propionic acid twice a day) and tested the fatty acid in a small study on MS patients.
The results were quite positive. After taking it for 1.5-2 years, the relapse rate was significantly reduced in the propionic acid group (0.1 instead of 0.2 relapses, which also shows that the patients were already well adjusted immunomodulatory), the disability progression by 20% reduced and the EDSS-Value dropped. The MRI even showed that the atrophy was undone; there was an increase in brain volume (typical of MS is actually an increased cerebral atrophyi.e. decrease in brain tissue, increase in the fluid-filled ventricles inside the brain).
A large-scale study involving 2,000 patients may not be financially viable, Haghikia said (and propionic acid might then be significantly more expensive as an approved drug), but the results they’ve unexpectedly seen are so compelling, which was also shown at the cellular level, by et al showed an experiment with nerve cells from the urine of Parkinson’s patients, which were treated with propionic acid after a chemotherapy recovered significantly better than without that they could clearly recommend propionic acid as a dietary supplement for MS patients. Taking the daily 1,000 mg (no more) is completely free, Haghikia said in response to a viewer question as to whether as a 2-timedose or all at once, whether in the morning, at noon or in the evening, the main thing is that it is pure propionate. A balanced propionic acid level is reached after approx. 14 weeks. The increased values caused by the intake would last seven to eight weeks after stopping, after which they would go back down again. Incidentally, propionic acid is also found in food, for example in Emmental cheese.
Also important: With all the studies and evidence for a balanced diet and dietary supplements such as propionic acid: not instead, but together with the right one immune modulation is the motto. On the one hand, the influence of the lifestyle changes is not very large, on the other hand, you want to add up the advantages. Therefore: only as an add-on. However, the hope remains that these add-ons will help us to reduce the dose of immune modulation in the future.
Prof. Juerg Kesselring
Making new synapses in rehab
Rehabilitation should not be underestimated in the treatment of MS. Rehab means: I do something despite MS. “Do what you can, where you are, as best as you can,” summarizes Prof. Jürg Kesselring rehab and redefines defiance: I have MS and Nevertheless I can do some things In a rehab, the condition of the patient and the potential of what can be done should be recorded. You should focus on what works, not what doesn’t. Which also means: Adjusting the training goals according to what you can do. Set realistic goals.
Rehab is not passive, it is active therapy. According to the Swiss Kesselring, inactivity is toxic – physically as well as mental. It is not the doctor or therapist who is supposed to “help” the patient in rehab, the patient himself has to do something. After all, the music doesn’t come from the cello, it’s the musician who creates the music.
Neurorehabilitation is applied resilience: Neurorehabilitation promotes constructive forces in order to regain the original or a new stable form/position. The basis is neuroplasticity. That Brain is able to compensate for certain disturbances, to adapt to changing conditions, to reorganize. Synapses can be reconnected again and again, which means that skills or functions can be learned (or re-learned). It is therefore fundamental to stay active – even after rehabilitation.
Kesselring’s credo is: it’s all about the TEAM. “Together Everyone Achieves More”, so on the one hand: What can we achieve together (doctor-therapist-nurse-relatives-patient)? On the other hand, it is also about surrounding yourself with people who are good for you/ build you up and don’t pull you down.
According to the law, rehabilitation must be effective, appropriate and economical. And the effectiveness must be scientifically proven. But numbers are not everything and do not say everything – the EDSS, the scale used to measure the progression of disability in people with MS, only shows the ability to walk, for example, but not our activities/abilities in everyday life (and leisure time) such as: buttoning a shirt, cooking a meal or even playing the cello.
Closing discussion: multiple sclerosis tomorrow
What will the next 40 years bring?
A hell of a lot has happened in the past 40 years of MS history and MS therapy – that was clearly shown by the AMSEL Multiple Sclerosis Symposium 2022. In a final discussion, the speakers talked about what the next four decades could or should bring, what hurdles have to be overcome.
Prof. Judith Haas, Prof. Jürg Kesselring, Prof. Ralf Linker and moderator Prof. Peter Flachenecker agree that they wish for clear progress for progressive MS, and that the scientists are also pinning their hopes on the EB virus. But even if you could eradicate MS like polio once did (as long as vaccination continues across the board), there would still be people who were already ill. Doctors see patients who are even better individually tailored to the patient as a task on the part of the patient.
More progress in progressive MS
The best therapies and the best rehabilitation concepts, however, are of little use if there is a lack of specialists, because doctors, therapists and nursing staff cannot be “carved”, according to Prof. Peter Flachenecker. The best possible care is a concern not least of associations such as the AMSEL. There is still a lot to do here.
Diagnostically, neurofilaments and optical coherence tomography (OCT) are interesting, they cannot replace MRI in its diagnostic breadth, but they can complement it. In the next five years, Prof. Ralf Linker expects neurofilaments to develop strongly towards practical use. According to Prof. Haas, a main problem could be that it takes a long time for the cost bearer to set up a (billing) number for it.
Practice, practice, practice
Prof. Kesselring sees such measuring methods as secondary when it comes to measuring in rehabilitation, because here you can look at the patient yourself to see what effects they have in practice and pictures and numbers don’t show that. However, it is very interesting for basic research. The situation is similar with high-resolution special imaging, according to Linker. Due to the sheer volume of data, they are not relevant in practice, but they are relevant for research.
Progressive MS and neurodegeneration: Kesselring sees training here as an important and often underestimated factor. Haghikia agrees: Training is important and, with the known means, that inflammation to stop. What the BTKi will do for progressive MS cannot yet be judged from today’s perspective, according to Linker. But you already have something in hand with:
- Training,
- rehab,
- physiotherapy and
- nutritional supplement
Growth factors would be promoted through training. The body itself produces them when stimulated to do so. Professor Kesselring concludes that he prefers this method to artificially adding the factors.
This is how the informatively packed day two of the AMSEL Sympsoium came to an end. Guests and speakers alike were extremely satisfied with the exchange, especially after a two-year break due to the pandemic.