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chronic fatigue syndrome - it is truly an epidemic and no one seems to be doing really serious research. Check out whether it comes on after a terribly stressful period - like my daughter - trained at a prestigius Boston music college and…

NOMINATED TOPIC | February 24, 2012
Briefly describe a specific question, or set of related questions, about a health care test or treatment that this program should consider.

chronic fatigue syndrome - it is truly an epidemic and no one seems to be doing really serious research. Check out whether it comes on after a terribly stressful period - like my daughter - trained at a prestigius Boston music college and then is thrust into living in a primitive Indonesian jungle situation with 3 young children. Also, see if you can relate neck x-rays in young children like my daughter had as an infant.

Does your question include a comparison of different health care approaches? (If no, your topic will still be considered.)

yes

If yes, explain the specific technologies, devices, drugs, or interventions you would like to see compared:

see above

What patients or group(s) of patients does your question apply to? (Please include specific details such as age range, gender, coexisting diagnoses, and indications for therapy.)

CFS with fibromyalgia, as I observe it, usually afflicts youngish women under 50 years and sometimes is shown to clustered in a small are. This disease is crippling young women especially with young families to care for.

Are there subgroups of patients that your question might apply to? (For example, an ethnic group, stage or severity of a disease.)
Describe the health-related benefits you are interested in. (For example, improvements in patient symptoms or problems from treatment or diagnosis.)

I am interested in research that will discover cause and cure, as well as treatment for pain and incapacitating fatigue.

Describe any health-related risks, side effects, or harms that you are concerned about.

Appropriateness for EHC Program

Does your question include a health care drug, intervention, device, or technology available (or likely to be available) in the U.S.?

unsure

Which priority area(s) and population(s) does this topic apply to? (check all that apply)
EHC Priority Conditions (updated in 2008)
  • Arthritis and nontraumatic joint disorders
  • Depression and other mental health disorders
AHRQ Priority Populations
  • Women
Federal Health Care Program
None

Importance

Describe why this topic is important.

Chronic Fatigue Syndrome is seen now as epidemic, yet serious money is rarely spent on research.

What specifically motivated you to ask this question? (For example, you are developing a clinical guideline, working with a policy with large uncertainty about the appropriate approach, costly intervention, new research you have read, items in the media you may have seen, a clinical practice dilemma you know of, etc.)

Daughter and grand daughter afflicted. Daughter, age 59 has had DFS for 30 years and today can do almost nothing because of pain and fatigue. Her daughter has a somewhat milder case but holding down a full time job is almost too much for her. She is in her thirties.

Does your question represent uncertainty for clinicians and/or policy-makers? (For example, variations in clinical care, controversy in what constitutes appropriate clinical care, or a policy decision.)

no

If yes, please explain:

Potential Impact

How will an answer to your research question be used or help inform decisions for you or your group?
Describe the timeframe in which an answer to your question is needed.

Now! This disease has been around for decades.

Describe any health disparities, inequities, or impact on vulnerable populations your question applies to.

Most of today's research seems to go for AIDS with disproportionate amounts of money spent on the most publicized diseases.

Nominator Information

Other Information About You: (optional)
Please choose a description that best describes your role or perspective: (you may select more than one category if appropriate)
Are you making a suggestion as an individual or on behalf of an organization?

Individual

Please tell us how you heard about the Effective Health Care Program

Arthritis Magazine, I believe

Page last reviewed November 2017
Page originally created February 2012

Internet Citation: chronic fatigue syndrome - it is truly an epidemic and no one seems to be doing really serious research. Check out whether it comes on after a terribly stressful period - like my daughter - trained at a prestigius Boston music college and…. Content last reviewed November 2017. Effective Health Care Program, Agency for Healthcare Research and Quality, Rockville, MD.
https://effectivehealthcare.ahrq.gov/get-involved/nominated-topics/chronic-fatigue-syndrome-it-is-truly-an-epidemic-and-no-one-seems-to-be-doing-really-serious-research-check-out-whether-it-comes-on-after-a-terribly-stressful-period-like-my-daughter-trained-at-a-prestigius-boston-music-coll

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