Topic Suggestion Description
Date submitted: September 25, 2012
- Briefly describe a specific question, or set of related questions, about a health care test or treatment that this program should consider.
- Can Morgellons Disease/Syndrome be linked to Lyme Disease? Where do the fibers come from that is embedded in a persons skin? Can this disease mimic the DNA of hair follicles that becomes very hard to remove from the given area? Why does Morgellons cause Attention Deficit, Bipolar or Obsessive-Compulsive disorders?
- Does your question include a comparison of different health care approaches? (If no, your topic will still be considered.)
- If yes, explain the specific technologies, devices, drugs, or interventions you would like to see compared:
- There are doctors who believe it is related to an infectious agent, perhaps in the same family as that which causes Lyme Disease. There is no evidence to prove this theory at the present time.
- 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.)
- Adults and Children are equally affected by the disease.
Individuals in families can experience symptoms of the disease while other members are unaffected. So it is not known, at this point, if the disease is contagious or inherited. Multiple members of a family can have symptoms.
- Are there subgroups of patients that your question might apply to? (For example, an ethnic group, stage or severity of a disease.)
- Most cases in the United States are from specific geographic regions of California, Texas and Florida, though all 50 states have had reported cases. It has been reported worldwide in places such as Europe, South Africa, Japan, The Philippines, Indonesia and Australia.
- Describe the health-related benefits you are interested in. (For example, improvements in patient symptoms or problems from treatment or diagnosis.)
- Attention needs to be drawn to Morgellons so:
Doctors will become informed and make accurate diagnoses
Insurance companies will cover medical expenses
Major government organizations (the CDC, for example) will pay attention and start funding research.
A cure will be pursued when enough research is done to find its cause.
- Describe any health-related risks, side effects, or harms that you are concerned about.
- There have been reports of people committing suicide because they have these symptoms. This disease causes dis-figuration. It is very painful, causes a person with this disease to become secluded. Short-term memory loss. Attention Deficit, Bipolar or Obsessive-Compulsive disorders
Impaired thought processing (brain fog)
Depression and feelings of isolation
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.?
- 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
- Developmental delays, attention-deficit hyperactivity disorder, and autism
- Functional limitations and disability
- Substance abuse
- AHRQ Priority Populations
- Low income groups
- Minority groups
- Individuals with special health care needs, including individuals with disabilities or who need chronic care or end-of-life health care
- Federal Health Care Program
- State Children's Health Insurance Program (SCHIP)
- Describe why this topic is important.
- This topic is important to me because I believe I have Morgelloms. I seem to have these things in my throat. I choke alot when I eat certain foods. I'm depressed. I keep my head down to the ground because I don't like people looking at my lower face because its disfigured. sometimes I just want to die, I can't because I have children and grandchildren. I spend hours pulling hairs and fibers out of my skin. The hair and fibers keep growing under my skin. Then I feel like the hairs and fibers and sticking me like a needle. I'm holding on because I view life as being special. Maybe I can help someone somewhere.
- 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.)
- Because I know that cost is involved. I also saw a media report on the subject. Doctor's don't recognized what is really involved with people who are suffering with this condition, It doesn't let up. I decided not to give up. I'm searching for ways to get some help. Maybe I can do a fundraiser. Maybe someone very well to do will help out with research. I just don't know yet.
- 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.)
- If yes, please explain:
- Know one really knows how to really treat the Morgellons Disease because of the cost to do studies. There are people who are trying to find a cure. But first we must understand the DNA makeup of Morgellons. I have used Kiehls - Over-Night Biological Peel (samples)because I can't afford to purchase the product. Well, my skin was getting better. The hairs,fibers and claws would seem to die. The hairs would be released and I could pullout the hairs and fibers very easy. The lumps on my skin started to disappear. I didn't have enough samples to keep it going. The pain wasn't so painful then. I could touch my face and it wasn't hurting that much to touch anymore.
- How will an answer to your research question be used or help inform decisions for you or your group?
- I will know if I have to keep on trying to find a cure on my own. I can't afford some products that seem to work. I get samples and my skin starts to clear-up somewhat. I don't have enough product,when the sample is gone, my skin condition comes right back. I believe that the inside of my body needs to be treated and also on the outside at the same time.
- Describe the timeframe in which an answer to your question is needed.
- As soon as possible.
- Describe any health disparities, inequities, or impact on vulnerable populations your question applies to.
- The CDC was stating misguiding information with regards to Morgellons and said that they didn't find what we were complaining about on the medical database which cause me to become very upset. CDC does not care that we are suffering with this crippling disease.
- 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?
- Please tell us how you heard about the Effective Health Care Program
- If I remember right, I believe it was through a database from my library class. Students had to do a medical research as our assignment and I chose Morgellons. That's how I found the research web site.