Child-rearing and ME/CFS

[Guest guest]

From Kate Andersen:

Dear Co-Cure Readers:

I am stunned to find almost no literature on child-rearing issues

when parents have myalgic encephalomyelitis/chronic fatigue

syndrome. If I have missed any published research reports, self-help

books or clinical manuals, I would appreciate knowing about them.

I want to raise issues that patients have reported in respect to

child-rearing when ill. Perhaps researcher-clinicians can evaluate

these statements to produce a guideline for best practices in the

near future.

1) Some ME/CFS patients report that they were never asked how they

coped with raising children when their doctors discussed treatment

with them; furthermore, they were not offered any help with their

disability allowances.

2) Some ME/CFS patients report that they managed to raise their

children very well in spite of the fact that they slept until noon,

took before dinner naps and were often vague when communicating with

their children and were unable to participate in normal family

events. They often stated that their spouses compensated for them

and they were grateful for the help. However, they acknowledged

marital strain arising from their lack of participation in family

life.

3) Some ME/CFS patients report that they did not realize one or more

of their children was developing ME/CFS, too. When they raised this

question with their child(ren)'s doctors, they were often suggested

to be projecting their own disease on to their offspring. Later,

when their children were diagnosed, there was no compensation for

the many losses experienced by the youth and by the family,

including total family breakdown and divorce.

4) Some ME/CFS patients report that difficulties that their healthy

or ill children had were often attributed to the parent's

limitations due to illness or lack of skill, when in fact the

children had learning disorders, temperament differences, or health

problems that may or may not have been related to the parents'

illnesses. Dr S Bell has presented at a conference in

Australia on the spectrum of chronic fatigue syndrome in adolescents

and he reports various health and learning disorders in the cases he

discusses. Note that Dr and Dr Byron Hyde reported

birth defects and stillborn births in the offspring of some mothers

with apparent enteroviral infection during pregnancy. Some of these

mothers apparently had ME/CFS when pregnant. Note that

enteroviruses can cause an array of disease including ME/CFS. A few

of the other diseases triggered by this virus group are juvenile

diabetes, juvenile arthritis, cardiac diseases. Enteroviral

meningitis can lead to learning disorders as well as to ME/CFS.

Therefore, doctors need to realize that reports of behavioral,

learning and/or health problems in offspring of mothers with ME/CFS

may result from the same virus or virus group that affected the

mothers. This is true in my own case as I fell ill with ME/CFS when

my infant son had sackie B1 meningitis. Other viruses that may

trigger ME/CFS may well cause ME/CFS in offspring of patients or

they may lead to other diseases.

5) Clearly, children can be affected psychologically by having ill

parents. However, there are many factors that affect how children

react and their own physical health will play a role in their

responses.

6) Parents who have raised children while ill may not be able to

count on their children helping them as the parents age, as these

children may have disabling conditions themselves. However, patients

report that doctors have failed to counsel these families to prepare

for the future. They have failed to advise young people about their

own risks of having ME/CFS over their lifespan and the consequences

may well be employment and educational failure leading to living on

social assistance (welfare) or disability, destitution, and even

suicide.