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Letters From Readers on the Need for CFS-Educated Doctors 10-04-06

  [ 183 votes ]   [ Discuss This Article ] • October 4, 2006

Doctors suggested daughter’s CFS was “Munchausen by Proxy”

How can I get the full article* discussing Munchausen by Proxy and CFS in adolescents? [MBP Syndrome describes “the exaggeration or fabrication of illnesses or symptoms by a primary caretaker,” who may even do things to make the child ill.] That's exactly what we went through for 15 months. Kaiser kept referring us to mental health, and doing toxicology screens, and the doctor at one point talked to me alone and suggested Munchausen by Proxy. (I knew what that was, because my MA is in clinical psych.) When I threw that knowledge back at him and asked to be transferred to another doctor at Children's Hospital in Denver, we finally got my daughter diagnosed, and she's doing better now.

This is a HUGE issue, and the pediatricians need to open their eyes! Thanks for letting me vent. The rheumatologist at Children's Hospital… nailed it right away, partly because of the spreadsheets I'd been keeping, recording every test result [my daughter] had had in the past 3 years. There ARE some good doctors out there!

* Note: See an abstract of the article “Pediatric Chronic Fatigue Syndrome and Munchausen-by-Proxy: A Case Study,” in the newsletter archive The full text of this article is still not available online at this date, but as with any abstract in our newsletter archives, you may locate the publisher by searching on the DOI or PMID number that is included with the abstract. Scientific and medical journals most often charge nonsubscribers a fee for access to the full text of a recently published article, though some offer “open access” to articles from past years.

Explaining symptoms was like talking to the wall

As you all know, finding a doctor who does not think it is all in your head is not an easy thing to do. I recently changed my primary care physician three times in fewer months, simply because it seems like I was explaining my symptoms to the wall - he just did not hear. Then maybe something good happened. With a new, and young doctor, I simply told him that I did not expect him to solve the problem, but told him the latest example: My insurance company would refund $150.00 a year to a patient (I am retired) who would visit a health club at least 122 times. Then a health club sent me an invitation, with 15 free days. The only problem is, with “normal” people, if you exercise a little each day, you start getting stronger. Sometimes this works for me, but usually, it starts working in reverse. All the positive thinking books - I read many, all the good intentions of counselors and teachers about perseverance, none of that works for me. The fatigue comes, even when I used to pray a lot for help.

My new PCP decided to investigate, and thinks I may have a Glycogen Storage Disease, possibly Pompe Disease. [A genetically linked enzyme deficiency that can vary widely in age of onset and severity, and affects ability to break down glycogen, a stored form of sugar the cells use for energy.] The only thing I wish to tell you is that I was super happy that a doctor would tell me something other than imply psychotherapy - usually after a few visits. Since my symptoms seem to be similar to those of the storage diseases, I am going through some testing and much investigating. I have followed your articles for quite a long time now, and have never read anything about this category. It never even seems to me that any of the investigators or any of the theories about CFS talked about genetic things. If you have any follow ups on these subjects, I would be glad if you could share them with me. – Leonard

Note: The study of genetic markers and risk factors associated with CFS, FM, and other diagnoses has expanded significantly in the past year. One example is the work of Dr. John Gow and fellow researchers in Glasgow, Scotland. Their study of 50 CFS patients "identified genes which were up-regulated compared with genes in normal healthy individuals,” and they have been expanding the study to check that this “gene signature is specific for CFS,” the ultimate objective being a possible diagnostic test.

“It’s all in your head” even more prevalent in UK

[You have] an excellent Website. I am always inspired by the stories of patients. It is interesting to note that Stateside so many doctors are interested in the biological factors bearing on the illness, whereas in the UK the psychiatric lobby is prevalent. At a recent ME conference held in the UK, I was encouraged by the presentations of Drs. Byron Hyde and Bruce Carruthers from Canada, as well as some of our own doctors who are very committed to the physical aspects of this illness and to proper workups of patients. We need more of this. - Helen

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