GNE Myopathy International and World Without GNE Myopathy (India) conducted a patient survey on treatments for GNE Myopathy. The survey was conducted in November 2016 and received 50 responses from GNE Myopathy patients. The survey was aimed at collecting patients’ views on the effectiveness of various treatments based on patients’ own experiences.
Before proceeding to the summary of the results, please note that the results presented below are in no way a recommendation of particular treatments or dismissal of the effectiveness of any treatments. The survey is only an informal assessment of patients’ views and should not be taken as an authoritative guidance on any treatment. Patients’ views presented in the survey are subjective and anecdotal and therefore could be misguided due to many factors. We encourage you to use your judgement in drawing any conclusions from these results. Presented below is a summary of the results of the survey.
2. POPULARITY OF TREATMENTS AND REMEDIES
The most popular treatments or remedies used by 68%- 70% of the patients are swimming/pool exercises, physiotherapy, and vitamin supplements. Sialic Acid was taken by 41% of the respondents while Mannosamine (ManNAc) was taken by 32% of surveyed patients. Use of some of the other remedies such as yoga, meditation, cardiovascular exercise, CoQ10, fish oil, protein supplement and massage range between 30% and 45% of the surveyed patients. A very small number of patients between 7% and 14% tried stem cell therapy, homeopathy, Ayurveda, accupressure, goat milk, antioxidants, and amino acids.
3. PATIENT RATING OF TREATMENTS
Of the most commonly used treatments (taken by 68-70% patients), those that received a high rating by more than 50% of the users of these treatments were physiotherapy and swimming pool exercises, while moderate rating was given to vitamin supplements.
Of the less common treatments (taken by 30-45% patients) those that received a high rating by more than 50% of users of these treatments were yoga, massage, meditation, cardiovascular and supervised exercises, while those that received a medium rating were Sialic Acid, MaNAc, protein supplement, and CoQ10.
Of the least common treatments (taken by 7-14% patients) those that received a high rating by more than 50% of the users were stem cell, homeopathy, and Ayurveda, while those that received a medium rating were amino acids and antioxidants.
To summarise the results, the remedies for which more than 50% of the patients who were using them said that they have benefited were: physiotherapy, swimming pool exercises, yoga, meditation, massages, cardiovascular exercises, stem cell therapy, homeopathy, and Ayurveda. Surveyed patients felt least satisfied by fish oil and goat milk.
In addition, some survey participants mentioned that the following remedies not included in our survey have benefited them: Creatine, Shamanic treatment, application of blackseed oil, staying active, regular stretching and MSM.
Patients surveyed seem to benefit the most from physiotherapy and pool exercises. Yoga, supervised exercises, meditation, massage, cardiovascular exercise are also very beneficial, although used by fewer patients. Sialic acid, ManNAc, protein supplement, CoQ10, vitamin supplements were of medium benefit. Stem cell, homeopathy, and Ayurveda could be explored in the future as they showed high benefit but the number of users among surveyed patients was extremely low, making the data less reliable. We need more objective measurements of treatment outcomes by medical experts to have confidence in the relative merit of each treatment.
5. SOME LIMITATIONS OF THE DATA FROM THE SURVEY
The results of the survey are based on patients’ assessment of remedies they have taken. However, this evaluation of remedies may be subjective. There is very little objective confirmation of these results by medical experts based on muscle strength or other measurements. Moreover, many users are taking more than one remedy. It is not possible to evaluate the relative contribution of each remedy in such cases.
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