ACM In Twins

[Guest guest]

Fellow Chiarians,

A question about ACM in twins came up last night. Here is a news item from the

ASAP site that addresses the issue.

ASAP Awards Grant to Study Chiari and Chronic Fatigue Syndrome

Recent media broadcasts have suggested there could be an association between

Chiari I Malformations and chronic illnesses characterized by fatigue and pain,

such as Chronic Fatigue Syndrome and Fibromyalgia. It's estimated these

conditions affect millions of people and now it has been suggested that an

unknown percentage of those patients may actually have a treatable condition

called the Chiari I Malformation. A problem with this publicity is there is

little scientific data to back up the claims that Chiari I Malformation and

Chronic Fatigue Syndrome or Fibromyalgia may be related. ASAP is pleased to

announce that we are now sponsoring a research project that we hope might remedy

the problem!

Dr Dedra Buchwald, director of the NIH-funded Chronic Fatigue Syndrome

ative Research Center at the University of Washington, is the recipient of

this grant. Dr Buchwald is currently performing extensive evaluations on the

central nervous system function of 22 sets of identical twins. ASAP will provide

funding for these 44 people to undergo Cine MRI's to determine if there is

evidence of Chiari Malformation, Syringomyelia or any signs of abnormal cerebral

spinal fluid flow.

What is unique about these 22 sets of twins is that only twin in each set

has symptoms and a diagnosis of Chronic Fatigue Syndrome. The healthy co-twins

will serve as a control group. This research is important for many reasons, but

probably the most clinically significant is that it may help to establish how

commonly these two disorders co-exist. If they are found together in a

significant number of patients, than this is a group of patients that physicians

need to be looking at and imaging, as early diagnosis is often an important

factor in overall long-term prognosis of Chiari/SM. From a scientific

perspective, the study of identical twins offers the enormous advantage of being

able to " control " or adjust for the influence of genetics and

upbringing---things scientists typically cannot account for very well in medical

studies.

You will be hearing more about this study as results become available. This

is the third research project that ASAP has sponsored. The first was a grant to

Duke University to study the genetic implications of Chiari Malformations with

or without SM, the second was a study involving asymptomatic Chiari I patients

at Hopkins. These grants are made possible because of generous

contributions from our membership! Thank you

Bernie