Melissa Kaplan's
Chronic Neuroimmune Diseases
Information on CFS, FM, MCS, Lyme Disease, Thyroid, and more...
Last updated January 1, 2014

Finding Attorneys, Doctors & Support Groups


Chemical Sensitivities
Differential Diagnoses
Lyme Disease
Finding Help:
  Disability Attorneys
  Support Groups

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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
Email Lists
Support Groups - Patient and Caregiver/Family
Online Forums/Message Boards

Information & Support: Setting Limits for Support Groups & Physicians



Find Disability Attorneys/Social Security Claims Representatives
The first resource to check is with the people in your local support group(s) who may have used--or not used--local disability attorneys and SSCRs.
National Organization of Social Security Claimants' Representatives
HMOs/Managed Care cases:

MCS/CFS/FM Disability: Michael Walkup & Associates


Find Doctors
American Academy of Environmental Medicine
American Medical Association's Doctor Finder
Co-Cure's Good Doctors List
Devin Starlanyl's CMP/FMS Care Provider List
Lyme Disease Physicians (See also Lyme Support Groups)
North Carolina Chemical Injury Network's Physician List
Thyroid Disease Top Doctors Directory


Communicating With Your Doctors
First, the struggle is to find a doctor who believes you are sick and can work on trying to help you get better. Then there's the struggle for disability benefits. Then, just when you thought you were safe, comes the disability review. Learn to make the best of your doctor's visits and other communications, and the importance of building your own medical records files.
Managing A Chronic Illness
Seven Steps to Finding a Doctor Who is Right for You
See more articles at CFS/FM @
When the Doctor Is In and You Wish He Weren't


Find Support Groups
In the days when the CDC spent research funds allocated for CFS research to trying to "prove" that CFS was just depression or somatic (all in the patient's head), it discouraged site visitors who came looking for support groups from using support groups, stating that participating in support groups would just make them sicker. I have heard doctors say the same thing.

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.

Those with FM should also check out the local chapter of the Arthritis Foundation and may contact them to find out about support groups and physicians in the area. Many support groups are listed in the city or county Volunteer services agency, and in the public libraries' community services listings, so please contact these entities in your city/county. For links to national organizations websites, please see my Resources section.

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
Lyme Disease Support Groups

Caregiver/Family Support
Family Caregiver Alliance
Jewish Family & Children Services (San Francisco/North Bay area, CA
National Family Caregivers Association
Redwood Caregiver Resource Center (Sonoma County CA)
Well Spouse Foundation

About Support Groups
Finding the Right Fit: Support Groups Vary

Starting A Support Group
Can't find the health-related support group in your area that you need? You might want to consider about starting one yourself - if you are looking for one, chances are good that others in your community have been looking for one, also. The following articles, while not writte for or by CND-related groups, tell you what you need to know to get one started.

NACI: Starting a support group or a discussion group
Parent-to-Parent: Starting/Running A Support Group
SelfHelp Org: How to Start & Maintain A Self-Help Group
CFIDS.Org: Support Group Leader Handbook (for purchase)
Additional Suggestions from Melissa Kaplan


Email Lists
These are just a few of the email lists that can be found on Topica and Yahoo!Groups.

CFS/EI/FM Support Group - San Francisco Bay/Adjacent
Living with CFIDS

FibroParents Email List
FMS/CFS Spouse Support
Kids of DisAbled Parents
Significant Others Support - Fibromyalgia (SOS - FM)


Online Forums/Message Boards (CFS & FM)

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