Melissa
Kaplan's
Chronic Neuroimmune Diseases
Information on CFS, FM, MCS, Lyme Disease, Thyroid, and more...
Last updated
January 1, 2014
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As if it isn't bad enough having a disease for which there is no specific laboratory test, the patient who is already struggling with a slew of physical and cognitive impairments must also try to find a doctor who both believes the diseases are real and has a clue about how to mitigate some of the symptoms, fight get disability benefits, and deal with a family who usually don't believe the person is really sick because, after all, they don't look sick. Rare indeed is the family member and friend who both believes the person is truly ill and who strives to understand how to help the person survive and cope over the short- and long-term. The resources on this page are useful in find the legal assistance often needed to obtain disability benefits, physicians and other health care practitioners knowledgeable about about these disorders, and support groups for patients and their caregivers. Disability
Attorneys/Social Security Claims Reps Information
& Support: Setting Limits for Support Groups & Physicians
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Disability Attorneys/Social Security Claims Representatives
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Support Groups With the advent of the Internet came the ability of patients to do more research on their health problems and to talk with others dealing with the same health issues. This empowerment made a lot of physicians very nervous. Rightly so, in some cases, since there is a lot of bad or questionable information out there, and not every patient is equally capable of making sound assessments or willing or able to dig deeper to get more information to sort through. Wrongly so, in many cases, because of the roles doctors found themselves locked into, where the Doctor was up on the all-knowing pedestal surrounded by compliant patients who never questioned the Doctors' words, their treatment plans, their diagnosis, their listening skills. Fortunately, there are an increasing number of doctors, professors and researcheares who are figuring out that there is a huge population of thoughtful, empowered, helpful patients out there from whom they can learn and to whom they can refer their patients for the types of support doctors cannot themselves provide. What I've Learned from E-Patients is well worth printing out to those you meet who denigrate support groups in general, be they online or in your community. Notes: Those with CFS & FM should strongly consider getting themselves checked for tickborne diseases, including Lyme disease, by knowledgeable physicians. The best place to find such doctors is by contacting the Lyme disease support groups in your area. Patient
Information & Support Groups Listing, by State Caregiver/Family
Support About Support Groups Starting A Support
Group NACI:
Starting a support group or a discussion group
Email
Lists Patient Caregivers/Family
Online
Forums/Message Boards
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http://www.anapsid.org/cnd/support/index.html
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