This post is to suggest patients with Amyotrophic Lateral Sclerosis may be able to obtain official copies of relevant journal papers with their insurance company paying for, or reimbursing the costs for official copies. In most situations, Stand of Care provides the patient with an outright cure for their medical issue. When there is no cure however, patients are Research Medicine patients rather than Standard of Care patients and need to 'wise up' about medical practices and frontier characteristics in order to decide whether to participate in clinical studies and improve the value of their participation in research proceedings, which may only be possible through review of official journal papers. Try to get a real hardcopy of papers or journal editions rather than electronic ones. After you have mastered them you could donate them to hospital or academic libraries, increasing the chance academicians and medical staff will read them. Since Amyotrophic Lateral Sclerosis is a rare disease many such libraries have very 'real time' information about actual ongoing research. Standard of care covers everything a patient needs to know but not everything is known for research patients (such is the reason for the research).

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This post is to suggest patients with Amyotrophic Lateral Sclerosis might be able to obtain official copies of the latest journal papers with their insurance company paying for, or reimbursing the costs of such copies. Most of the time, Stand of Care provides patients with an outright cure for whatever medical issue they must deal with. When there is no cure, however, patients are Research Medicine patients rather than Standard of Care patients and can improve their wisdom on medical practices and characteristics of a frontier new for them through review of official journal papers. Meaningful consideration of whether participation in clinical studies and the actual value their participation provides is increased by the improved understanding of the syndrome characteristics (especially at the biological level) and may only be possible through review of official journal papers. Try to get a real hardcopy of papers or journal editions rather than electronic ones because electronic ones are subject to excessive control and can all too easily be modified. After you master them, donate them to hospital or academic libraries and increase the chance academicians and medical staff will read them. There are many recognized medical issues and undoubtedly more awaiting recognition. Since Amyotrophic Lateral Sclerosis is a rare disease most libraries have limited current information regarding ongoing research and the latest achievements. The more wisdom one has regarding their medical situation, the better one can help themselves and the prosperity of research activities, which means decreasing the time remaining until a cure is found. Patients considering participation in a clinical study deserve the latest insights and can better serve research by the improved professionalism such learning can produce.

should be able to claim it on tax or extra given in social security payments. I guess that's what you mean by insurance. it goes for a lot of neuro illness though, not just ALS but I understand why you wrote what you wrote. Some papers that are relevant to my illness are very expensive when new. I no longer want to be reading results from 10 years ago free to net when there's brand new incredible work just coming out now.

Thanks Lara for your thoughtful remarks . . . US citizens are required to have health insurance coverage, although some are not private . . . my feeling is their health insurer will cover such expenses if their disease does not have a cure . . . better chance with Amyotrophic Lateral Sclerosis than with other disorders . . . I hope some patients will try and share their findings here or somewhere; as you know there are very few people posting on social media but they are reading as page view counts show. In the US people should not have to identify themselves because the information is part of what HIPAA is all about but some venues practically require such disclosures . . . better to interact confidentially and thereafter share your findings with your licensed health care professional. It is very easy to get bad medical advice when the disorder has not cure.