Tag: <span>medical information</span>

PubMed Central is a free digital archive of biomedical and life sciences journal literature at the U.S. National Institutes of Health (NIH), developed and managed by NIH’s National Center for Biotechnology Information (NCBI) in the National Library of Medicine (NLM). All of the articles have been peer reviewed and published in professional journals.

PubMed Central exists by Congressional mandate. Any researcher funded in whole or in part by the National Institutes of Health must provide the resulting manuscript to the NIH for publication electronically. Concerned that so many journals were providing free abstracts of research but charging fees for access to full journal articles about research which had been paid for with public funds, the NIH adopted an open access policy.

What does this mean in real terms? It means you can read the full text of 42,807 journal articles related to Multiple Sclerosis.

Here’s the link: http://www.ncbi.nlm.nih.gov/sites/entrez?db=PubMed

MS Information Sources

My wife’s local MS Support Group held an MS Awareness event at our local library. The event started with a style show of clothing designed for ease of use. This was followed by a discussion about healthy eating which was led by a local Registered Dietitian. Finally, a young family practice physician (who is also an MS patient) answered questions for the participants. It was an excellent morning and is a fine example of the value of participating in a local support group.

As I recall the conversations I overheard during the event, I noticed common themes. In order of frequency, first was the concern about doctors who do not listen, second was a concern over medications, and third was the common concern about the cost of medical care. With good reason, these three themes seem to be common undercurrents when patients gather.

I’ve said it before: every person I’ve met with MS has been tenacious, determined and tough. They make most of us without MS seem like whiners. While they may be slowed physically, I’ve not met anyone who let their MS symptoms or their experience of Multiple Sclerosis stop them.

It’s sadly ironic to me, then, that the most common complaints I heard were about issues that are out of the patients’ direct control and are related to medical care: doctors who will not listen, medications and side effects, and the cost of care.

Assuming the stories of helpful doctors who made housecalls and treated patients like they were extended family are actually true, the medical professional has taken a left turn somewhere along the way. I know that’s a generalization, but it seems to be the experience of many.

When the practice of medicine as a profession is turning into a business for profit it must become bottom-line focused. The doctor can’t listen because she has too little time, medications are a two-edged sword solving one problem but causing others, and costs are structured so shareholders receive the best returns at patients’ expense. That’s the world we live in.

The Value of an MS Support Group

The issues I overheard the group members share are actually one of the many reasons an MS Support Group is a good thing for patients and caregivers. A good support group is an oasis where one can relax in the presence of others who share their experiences, advice, knowledge and (most importantly) their support.

Caregiver Tip: Become involved in an Multiple Sclerosis Support Group. It may be one of the wisest things you and the person for whom you care do.

MS Support Groups

You may remember a teacher saying “you must use authoritative sources” when writing a research paper for class. What your teacher meant was to use sources written by people with academic or professional credentials.

For example, if you were to write a paper on growing roses, your neighbor with a green thumb and beautiful New Dawns might be a great source of information. However, unless she has a degree in botany or is a Master Gardener, your teacher will not consider her an “authoritative source”.

When researching medical information online you may be overwhelmed with the amount of information available for you to choose among. There are web forums, blogs (like this one, MSCaregiver.com), web portals, industry-related web sites, and online encyclopedias.

Be careful. Pay attention to what authority stands behind the information. A good example is this blog, MSCaregiver.com. I am not an authority on Multiple Sclerosis. I am not a physician or research scientist. I will not write beyond my authority. I am a man married to a woman with Multiple Sclerosis, “doing my best when I can’t make it better”. I write about what works for me and I share it here. Some of it is practical information like “Tips for Traveling and Multiple Sclerosis” and “How Does One Talk with a Doctor?“. Some of it is inspirational, “How Do You Pray?“. Because I am not an authority on Multiple Sclerosis, I will not say, “take drug X and it will relieve your symptom Y”.

Why this discussion about authoritative sources?

It is vitally important that caregivers and patients not base their medical decisions on bad information. Bad information is information that is wrong or incomplete. An example of incomplete information is discussed in a recent article on MSNBC.com titled, “Wikipedia often omits important drug data“. The subtitle is “Study: Entries may not include side effects or risks from mixing medications”. I encourage you to read the article. It’s important.

The article mentions a better source for medication information is Medscape Drug Reference, a free, peer-reviewed web site. The article also mentions using medlineplus.gov for “good quality information that you can feel confident in.”

If you want to learn about joining a support group or what my wife means by “leg hours“, this blog is for you. If you want professional help with an issue more critical to health, that might be risky or is medical in nature, talk with a physician. Use authoritative sources.

MS Information Sources Online Caregiving Resource