AHMF: Medical Research Trust

Following organisation of the 1998, 1999 and 2001 International Clinical and Scientific Meetings for ME/CFS, the Alison Hunter Memorial Foundation's future direction will be fundraising for targeted research projects—research that will make a difference to the lives of people with ME/CFS.

South Australia has a committed group of researchers working across the areas of endocrinology, immunology, neurology, nuclear medicine, and genetics, with a unique breadth of experience and achievement in ME/CFS.

The following projects have had partial research support in the past and have generated interesting pilot data or have led to full publications. Detailed grant proposals are available from the principal investigators when specific funds become available. All funding estimates are approximate. The projects would require full ethical approval from the relevant institutions prior to formal provision of any funding award.

Overarching Hypothesis: CFS and related disorders have been associated with relatively low cortisol secretion.

The hormone cortisol is essential for life and protects the body against stress, largely through counterbalancing the action of the immune system. Stress is defined as a threat to homeostasis and incorporates such disturbances as infection, trauma and psychological upset. Short-term studies with a low-dose hydrocortisone therapy for 1-month have shown complete symptom resolution in 28% whereas higher doses have been associated with side effects. Recently, Dr. Torpy has found that CFS is associated with higher levels of the cortisol transport protein, CBG, and lower cortisol, due to a particular genetic change or polymorphism of the CBG gene. This study of approximately 300 CFS patients and 200 controls requires re-confirmation in a specifically targeted group of CFS patients.

Aims and Funding:
1. To study the effects of low-dose slow release hydrocortisone in longer term studies of CFS (up to 3-months), and relate this to baseline stress system function.

2. Establishment of an internationally unique sibling pair database of CFS patients i.e., sibling pairs of subjects where one has CFS and the other either does or does not have this condition. This would allow us to study the connection of the stress system to CFS, and help us determine if abnormal stress system function is pre-existing or only develops after CFS. The study would also have the capacity to verify the one suspected genetic association, described above and establish new ones. This may shed light on new mechanisms for development of the disorder.

Funding required for sibling-pair database (pre-analyses) - $100,000.00 (over 2-years)

Principal Investigator: Assoc. Prof. David Torpy, Endocrine and Metabolic Unit, Level 7, Services and Teaching Block, Royal Adelaide Hospital, SA 5000

Justification: There are no reliable data available internationally on the prognosis of chronic fatigue syndrome.

In addition, there are no Australian data that can help us understand underlying risk factors for CFS. There is a pressing need to understand these issues. Data on prognosis would help in the rehabilitation process for patients and would be useful for compensation. In the past, information on the background and setting of sufferers has led to new research directions for the causes(s) of unexplained disease. Plans are underway to establish a patient register with follow-up of CFS sufferers, in collaboration with epidemiologists at the University of Adelaide. Funds are now required for a part-time data worker and the provision of some basic consumables. The University is prepared to offer the relevant infrastructure. Please note that this funding could also be used to initiate the sib-pair study described above.

Justification: Published Australian studies using nuclear (Ceretec) scanning and MRI have revealed specific brain regions with altered blood flow in fibromyalgia and CFS.

These studies have received very little external funding and given their successful pilot status urgently need to be given major project status. The results suggest that brain regions involved in control of the stress system and pain regulation, such as the medial pre-frontal cortex are abnormal and this fits with the stress-hormone data.

Funding required: minimum continuation funding - $20,000.00 (for part-time statistician to analyse all current data).

Principal Investigator: Dr. Richard Kwiatek, Consultant Rheumatologist, The Queen Elizabeth Hospital, Woodville, SA 5011

The projects listed are all linked in considering CFS as a stress related disease with ramifications in the brain and hormonal systems, and in seeking greater knowledge on a practical and basic level in the area of CFS. South Australia has a unique breadth in CFS research experience and achievement, but for this to work towards better management of CFS, funds are required.

Alison Hunter Memorial Foundation Medical Research Trust
ABN 27 103 523 800 CFN 17078

Gifts/donations of $2 or more are tax deductible—ATO endorsed deductible gift (1 July 2000)

Alison Hunter Memorial Foundation
PO Box 6132
North Sydney
NSW 2059
Australia

Facsimile: +61 2 9922 4054

Telephone: +61 2 9922 4054