Every year, approximately 400 people in Sweden develop ALS. Most people affected are between 45 and 75 years old, and survival from diagnosis is between two and four years for most patients. Consequently, there is a great need for new treatment methods.

Early in the course of the disease, patients lose neurons in the hypothalamus of the brain, which is a kind of control center for the balance of the autonomic nervous system (ANS).

The ANS is divided into a sympathetic and a parasympathetic part and affects, among other things, the heart, blood vessels, lungs, gastrointestinal tract and glands. An imbalance between the parts of the ANS, dysautonomia, can lead to tissue damage and symptoms of disease.

Most ALS patients experience at least one dysautonomia symptom, which indicates insufficient activation of the parasympathetic nervous system. Symptoms include urinary dysfunction, constipation, impotence, and dry eyes. Dysautonomia is particularly severe in patients with bulbar ALS, which is the form of the disease where speech and swallowing are affected early in the course of the disease. Studies have shown that dysautonomia appears to negatively affect the course of the disease and survival for ALS patients.

Currently, there is no blood test to identify ALS patients who have dysautonomia. There is also a lack of good treatments for the symptoms caused by dysautonomia.

Update (May, 2025):

Foundation member Dr. Alexander Juto and associate professor Caroline Ingre are now investigating whether the blood concentrations of creatine kinase (an enzyme found in various tissues, including cardiac and skeletal muscle) or troponin T (a protein found in cardiac and skeletal muscle) are linked to the risk of developing dysautonomia. They are also investigating if dysautonomia is more common in patients with either of the most common gene mutations in ALS (SOD1 and C9orf72). Dr Alexander Juto and Associate professor Caroline Ingre recently, together with co-workers, published a study in “Brain Communications” showing that plasma troponin T correlates with the degree of lower motor neuron involvement on electromyography in patients with ALS.

While not yet evaluated as a treatment for ALS, INMEST provided up to 30% symptom relief in patients with myalgic encephalomyelitis (ME) who were treated with INMEST bi-weekly for two months in a double-blind, placebo-controlled, randomized clinical trial. This improvement in ME patients was measured on a symptom rating scale that consists of 14 common ME symptoms. At least 7 of these symptoms have been described in ALS patients, of which several are likely due to dysautonomia. We know that INMEST activates several areas of the brain that control the balance in the ANS and we now want to study whether the treatment reduces symptoms of dysautonomia in patients with ALS.

Preparations are ongoing for conducting a pilot study that will be led by dr Ingre in which approximately 10 ALS patients with reported dysautonomia symptoms receive INMEST treatment three times a week for three months. They will undergo repeated measurements that include symptom assessment questionnaires, analysis of heart rate variability and of creatine kinase and troponin T in blood. Matched controls will be identified through the Swedish ALS Registry and will undergo the same assessments as the patients receiving INMEST. The study will evaluate whether patients who receive INMEST experience a clinically relevant improved quality of life and reduction in dysautonomia burden as assessed by symptom questionnaires and heart rate variability.

All donations to the INMEST Foundation marked with “ALS” go directly to our research evaluating INMEST as a treament for ALS. Thank you for your contribution!