Change For Me present NCNED with $10,598.

In our previous blog post we mentioned a donation of over $10 000 that Change for Me would be passing on to NCNED (National Centre for Neuroimmunology and Emerging Diseases), so on Thursday Ann, Trish, Suzanne and Kerry loaded up the giant cheque and headed out to make the official presentation. It was an exciting day for them and eye opener for us.

NCNED are a ground breaking internationally recognized ME & CFS research facility and we are lucky enough to have them right here in our own back yard at the Gold Coast. 

Don and Sonya in the lab.

NCNED was born out of a discussion between leading immunologist Professor Sonya Marshall-Gradisnick and ME & CFS specialist clinician Professor Don Staines. Don’s experience of working with ME & CFS patients and Sonya’s experience in immunology and genetics led them to a starting point for their research. From there they have grown to a team of 15 including PhD and Postdoctoral researchers. 

Their ultimate goal is to discover the pathology behind the disease and create a kit of biomarkers that one day will allow doctors to diagnose the conditions accurately and target treatment appropriately. Their team is working to an intense work schedule. On days when samples are collected from severe patients they return to the lab just before midday and work systematically throughout the night often until 1 am. At 7 am the work begins again. Some of these dedicated people are working 7 days a week for us. 

The NCNED lab.

NCNED are the only ME & CFS research facility in the world to share their premises with a patient clinic and one of the few research groups that have included severely ill patients in their studies. As well as seeing patients at their clinic, they visit housebound patients at home to draw blood and gather information about symptoms and daily levels of functionality.

One question they are particular interested in is what is happening in the body when patients move between moderate to severe levels of illness. This is something that has never been investigated before by any research team.

To date NCNED have published over forty papers in immunology journals and presented at over 100 conferences; essentially describing the cell functions and receptors in ME & CFS patients and detailing key receptors for the disease. Their latest paper investigates differences in immune function between patients of different severity. Next on their agenda is to explore the role of drugs in treating ME & CFS.

Clinic Waiting Room

On the flipside of the research is the patient clinic which is housed in the same building as the labs. Having the scientists, doctors and patients all under one roof allows vital information to flow through from one area to another in a way that is rarely seen.

The Clinic is open one day a week and is currently being reviewed to assess and plan for future directions in diagnosis and treatment. Patients have a dedicated receptionist and dedicated lounge which is quiet (no music) and soft light. The initial visit generally takes around two hours. The team meet to discuss each patient’s file before the patient arrives. A detailed history is taken by a specialist clinical nurse before a physical assessment by a clinician. Blood samples may also be taken and, if suitable, patients’ blood may be used for research (with patient’s informed consent). The outcome is a detailed assessment for each patient and the referring doctor. The clinic has a neurologist, cardiologist, rheumatologist and other specialists that they can refer to. As a bonus for patients the clinic absorbs many of the costs leaving the patients out of pocket only $55. There is also a psychologist available who understands the needs of people with ME & CFS (definitely not GET or CBT focused) and she is there to provide assistance to patients when wanted.

Change for Me will be watching and reporting on the exciting progress that NCNED continues to make for people living with ME & CFS. Funding of research is by way of government and private grants and public donations.

Don thanking Suzanne & Trish with flowers for their efforts in raising the bulk of the money.

Details for making a public donation can be found on the NCNED website here –