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Hallmann research Phase III – call for vounteers
Saturday 9 January 2010
A doctoral research project by Geoffrey Hallmann has entered its next phase and Geoffrey is calling for voluteers.
Here are the details from Geoffrey:
Research Project: Persons with ME/CFS: An Examination of Health Issues and Relationships with Social Institutions in Australia
PARTICIPANT INFORMATION STATEMENT
5 January 2010
Dear Potential Participant
Re: Research Project: Persons with ME/CFS: An Examination of Health Issues and Relationships with Social Institutions in Australia
My name is Geoffrey Hallmann. I am a ME/CFS researcher at the Southern Cross University in Lismore, New South Wales. I am currently recruiting potential participants for Phase III of my research, which is now due to get underway in approximately May/June 2010.
In previous notices the advice was that the study would enter Phase III around December 2009. Phase I and II are now being coded and the questionnaire for Phase III is being constructed.
The following will outline the background of the study, its objectives and interview process, along with your rights and obligations.
• Myalgic Encephalomyelitis (ME)
• Myalgic Encephalopathy
• Post Viral Syndrome (PVS)
• Post Viral Fatigue Syndrome (PVFS)
• Post Infectious Fatigue Syndrome (PIFS)
• Chronic Mononucleosis
In addition to satisfying the above, you will also have the ability to read and speak English and you will satisfy the three major definitions of ME/CFS used here in Australia (please refer to the appendix below).
Objectives of the Study
Outline of the Research
In order to get a geographic representation of Australia and verify the research Phase III will include the entire continent – city and country alike.
The Questionnaire will be available in three formats. The first and most preferable will be via a website call Survey Monkey. Once the questionnaire is finalised it will be posted on the site and all participants will be notified and invited to complete. For those who cannot use the site, a second format and third format will be provided. The second format will be the same questionnaire delivered via Email and the third will be delivered by (snail) mail. The latter two are for those participants who want to be a part of the research but simply cannot or do not have access to the Internet, or who are unable to endure the time required on the Internet site.
Given the nature of ME/CFS, particularly with respect to the fatigue, pain, cognitive and memory features that can occur, there will be an appropriate time period allowed to complete the instrument.
A Consent Form will be provided in phase III to obtain your agreement to participate in the study. For those using the website, this will appear at the front, whereas those receiving it via Email/Mail will have to fill out a hard copy and return.
The Consent Form is your agreement to be involved in the study, however you are free to withdraw at any time if you so desire. All information provided would be treated as anonymous and strictly confidential. Participation in the study will not necessarily benefit you directly.
Possible Discomforts and Risks
Conversely, if I believe that you appear to be in distress or the process is exacerbating your symptoms, I will terminate the interview in order to protect your health. If either event occurs, you will be referred to your treating General Practitioner for investigation and treatment if required.
Where an interview is terminated early, we can come back to the session at a later date if you wish to continue.
Time Commitment of Participants
Responsibilities of the Researcher
An opportunity for you to provide either a postal or email address in order for you to receive the results of this research immediately follows the consent section of this form. Additionally, if you wish to discuss the results further, access to the researchers will be arranged in order for you to do so.
Freedom of Consent
Documents and data will be kept at the University in locked cabinets with all identifying information such as name and address removed. Online data will be secured and kept confidential within the website. After completion of the study data files will be securely stored for 7 years. After that time all files will be shredded.
All complaints, in the first instance, should be in writing to the above address. All complaints are investigated fully and according to due to process under the National Statement on Ethical Conduct in Research involving Humans and the University. Any complaint you make will be treated in confidence and you will be informed of the outcome.
We sincerely thank you for your time and greatly appreciate the effort and commitment of in participating in this study. It is only with your efforts and cooperation that valuable research such as this is able to be conducted.
Please contact the writer in the meantime if you wish any clarification of any aspect of this letter.
+ 61 2 6624 1979
Appendix A – Criteria
Definition and Criteria
To participate in this research you must satisfy all of the following three criteria:
Criteria 1 - Ramsay defines the clinical identity of Myalgic Encephalomyelitis as:
Criteria 2 - Fukuda et al. 1994 define Chronic Fatigue Syndrome as:
In a patient with severe fatigue that persists or relapses for 6 months (Fukuda et al. 1994).
Clinically evaluated, unexplained, persistent or relapsing chronic fatigue that is
Minor Criteria: The concurrent occurrence of four or more of the following symptoms, all of which must have persisted or recurred during six or more consecutive months of illness and must not have predated the fatigue:
The Fukuda Definition excludes the following from a diagnosis of Chronic Fatigue Syndrome:
Criteria 3 - Carruthers et al, 2003 defines ME/CFS as:
1. Fatigue (physical and mental)
2. Post-exertional malaise/fatigue
3. Sleep dysfunction
5. Two or more of the following neurological/cognitive manifestations:
6. At least 1 symptom from 2 of the following categories:
A. Autonomic dysfunction
B. Neuroendocrine manifestations
C. Immune manifestations
7. Chronic duration:
8. Exclusion of active disease processes that explain most of the symptoms:
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