For Parents of Sick and Worn-Out Children

Recipient of  HEALTHY WAY  "Best of the Web" Award
                                                                    and
                                       StudyWeb Academic Excellence Award
When your child persistently suffers from pain, fatigue, heat and exercise intolerance, dizziness, nausea, 'cognitive fog,' and other symptoms of Chronic Fatigue and related syndromes, you as a parent have special kinds of problems. This page is devoted to developing and pointing toward help on these problems.
Children who have these kinds of problems are often overlooked, thought to be depressed, considered school-avoidant or irresponsible, lazy, lacking ambition or energy, or self-centered. Why Children with CFS Are Often Overlooked explains why this happens.

Another reason these problems are often misdiagnosed is "To Find It, You Have to Listen.'

Parents of these children are often suspected of making their own children sick, whether deliberately or unconsciously.  Parents who advocate strongly for their chronically ill children are often falsely accused of Munchausen by Proxy Syndrome.  In some cases the children have been removed. To find out more click here.
CFS, FMS, and related illnesses are NOT depression, school phobia, or other emotional conditions.  To find out why not, click here.
What symptoms or behaviors might cause you to suspect your child has one of these illnesses?  Go here.
Here's my own satiric view of "hysterical medicine" illness among physicians in "A New Mental Illness?"

You might want to subscribe to my newsletter, "Frank's."

Jane Colby of Britain's "Action for M.E." believes that children with M.E. (CFS) have rights to be treated with dignity, respect and humanity. She explains these rights in The Children's Charter. Another important document on the Colby pages is the Guidelines for Schools. These guidelines are written for British schools, but parents will find them helpful in understanding what their schools should be doing no matter where they live.

A Parent's Guide To CFIDS: How to Be an Advocate for Your Child with Chronic Fatigue Immune Dysfunction Syndrome by David S. Bell, Mary Z. Robinson, Jean Pollard, Tom Robinson, & Bonnie Floyd, (1999, Haworth Medical Press) is the best available written guide for parents of a child with CFS or anything like it.  You can buy it through bookstores both on and off line. Dr. Bell is n internationally known as an expert in CFS, particularly pediatric CFS.   I also recommend Dr. Bell's Lyndonville News, an online CFS newsletter which always includes Mary Robinson's column, "The Parents' Corner."  There is a small subscription charge.  For a free copy write to CFS-DSBELL@juno.com  putting the word "newsletter" in the subject heading and your e-mail address in the body of the message.

A special interest of mine is chronic orthostatic intolerance.  This condition may also be called orthostatic syncope (pronounced sin-co-pee), neurally mediated hypotension (NMH), postural tachycardia syndrome (POTS), or dysautonomia.  In these conditions upright posture (standing, even sitting) can make you dizzy, tired, fuzzy headed, or produce pain.  For more information about these conditions click here.

I am also very interested in Chiari I Malformation and cervical stenosis.  These conditions can cause symptoms similar to Chronic Fatigue Syndrome and Fibromyalgia.  Dr. Yunas of the Fybromyalgia Alliance of America explains these condtions very well.  For further information, go to links.

If you enjoy fiction you'll like Going Along Together.  It's about an adult and a teen with CFS.

Another of my writings is about Alice James, sister of William and Henry James.  Alice got sick with what looks like CFS in the mid 19th century.

Other Topic areas are:
Who I Am
Medical Basics
Disability Basics
Experiences of Sick and Worn-Out Children and Their Families.
Schools and Education
Dealing with Pediatricians and Other Doctors
Family Life and Emotional Development
Other Links

This page was started in November, 1995. It keeps getting out of date, because I don't have enough time to put into it. Now in November, 1999 and I am working on it again (first time since December, 1997). Please let me know of stuff that should be on this page!

Send me an e-mail to subscribe to my newsletter, Frank's.  It's not really a newsletter but I don't know what else to call it.  I write news stories, columns, narrative non-fiction and fiction related to CFS in both adults and children.  The first issue was May 1, 2000, and I hope to get an issue out every month or so.  Click here for back issues.

If you are a parent of a child or adolescent who has CFS/ME or similar problems, send me an e-mail (franka@bluecrab.org).  I am collecting names and e-mail addresses, perhaps eventually to start a newsletter. I've been saying this for four years but it may yet happen.

I like to write back and forth to other parents, and also to teens, about the problems they are having.  I do this on a volunteer basis.

The best online source of information about CFS/ME in children is the Youth Home Page of the CFIDS Association of America.

    If you are a young person with CFS/CFIDS/ME, or FM, there are pen pal organizations, chat rooms, and many other resources both Online and Off-line. The same links provide contacts for parents.  I particularly recommend the online discussion group for parents, CFS-P.  To subscribe to this group click here or copy this address:  http://www.tertius.net.au/mailman/listinfo/cfs-p

A number of adolescents and young adults maintain lively and interesting web sites.  You will find a list here.

Links get out of date.  Please let me know of any you find here that do not work.

For the Co-Cure Web Ring, go to the bottom of the page.

         Frank Albrecht, Ph.D.

Last revised 05/28/2000 Number of visitors since 11/11/1999

 
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