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

One of the most tragic aspects of CFS/FM/MCS is the loss of family and friends....people who should be supportive and understanding aren't. Instead of learning about the disease, they say, "it's all in your head," or "just get off your ass and exercise and you'll be fine," or "you're just trying to get attention." Well, it is in their head: it is a serious neurological disease, not a mental or psychiatric disorder. Exercise actually makes things worse, not better. And, finally, there is not a soul who has CFS/FM/MCS who wouldn't give their right arm and whatever else it would take to not have it.

Yes, it's scary. Yes, it is a drag to call someone who mumbles, can't follow what you're saying, and always turns down invitations to go to a party or meet some friends for dinner, play a few sets of tennis, or go shopping. Yes, it is a pain in the neck to remember to not wear your usual bathroom and dressing table full of scented products, freshly dry-cleaned (or Bounced clothes) when you do finally see them.

Tough. Deal with it. It's a hell of a lot worse from our end, trust me. We didn't choose to get sick, and as much as we think positively and meditate our body healthy and drown ourselves in every quack and mainstream and alternative potion, pill and prodding that we hear about and wish it would go the hell away, it doesn't and it won't. It is not our fault we are sick, and it certainly isn't our fault that there is no definitive diagnostic test or treatment. Our reality is surreal. Don't make it worse by what you say and do - and don't say and do.

Had enough guilt dumped on you? Okay, then let's get constructive and find out what you can do to be supportive!

Listening to CFIDS
Most CFIDS and FM sites are put together by people suffering with these diseases. Most support groups are started and run by people suffering with these diseases. Unlike most other diseases, there are very few healthy people putting in time to help support PWCs/PWFs in their struggle to spread accurate information about the disease and how to help those trying to survive on a daily basis with it. Listening to CFIDS is a shining example of a healthy individual's work to grasp the comprehensiveness of this disease while giving PWCs a comfortable place for meeting and sharing with others while providing topical information on the disease.

CAA's Family and Friends
Information for families and friends of those who have CFS, from the CFIDS Association of America.

How To Kill A Sick Friend
When chronic illness strikes, especially one as scary and about which so much is unknown as is CFIDS/FM, family, friends and formerly close coworkers evaporate into the mist - or unwittingly stab us in the heart with careless, ill-thought out remarks.

When You Need A Friend
Written for people with CFS, this is a good article for friends and family, helping everyone understand some of the painful - and often unintentional - dynamics of seemingly innocent comments.

How Does It Feel To Have CFIDS?
A humorous look at what healthy people can do to approximate some of the physical aspects of living with CND.

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