Open Australia: Healthy volunteers needed for study in Melbourne

Andy

Andy

Retired committee member
HEALTHY VOLUNTEERS NEEDED IN MELBOURNE FOR ME/CFS STUDY!

La Trobe University ME/CFS researchers, Sarah Annesley, Paul Fisher and Daniel Missailidis are recruiting healthy participants for a new ME/CFS study, which will be a larger study extending their previous work examining mitochondrial issues in people with ME/CFS.

One of the most challenging aspects of research is finding healthy participants who can be compared with patients, so they’ve reached out to ask for help.

Participating in the study takes approximately 60 minutes, at La Trobe University in Bundoora.

The study involves:

- Weight and height measurements.

- Survey/questionnaires.

- Standing test: participants will be asked to lie horizontally for 5 minutes, stand for 20 minutes, and then lie down for an additional 5 minutes (during this time blood pressure, heart rate and oxygen saturation measurements will be collected).

- 40-50mL blood collection for pathology testing and creation of an infinite supply of cultured, healthy cells for mitochondrial testing per volunteer.

- Skin punch biopsy (optional).

Please share this post with any Melbourne family and friends who might be willing to participate.

More details and how to register to participate can be found on the flier: https://app.box.com/s/rbmtwk8en0hn2eytk7jtmwawzv8xj47i
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From
Code: 
https://www.facebook.com/MEAdvocacyNetworkAustralia/posts/2389561841112167
 
Some good news on the Emerge Facebook page - It looks like they have the healthy controls they need. And interestingly they are also performing a skin biopsy on the arm (as posted by @Andy above).
Code: 
https://www.facebook.com/EmergeAustraliaInc/photos/a.10152700520929111/10157601318874111/?type=3&theater

CEO Heidi Nicholl and COO Danielle Griffin ready to be ‘controls’ for PhD student Daniel Missailidis at La Trobe uni this afternoon.

We’ve done the weighted standard test, a blood draw and a skin biopsy. And had a biscuit as a reward!
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This was the last day for the control ‘healthy’ patients .... Amazingly Daniel met his targets and doesn’t need more people at the moment. Not sure about the patient numbers but can check if you like?
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From the comments it seems they also have home visits for severe ME folks in the works too.
 
There is an updated description of the study showing 3 visits over 3 years rather than just one visit, and patients must be diagnosed by a clinician according to the Canadian Consensus Criteria.
ME/CFS PATIENTS NEEDED IN MELBOURNE FOR ME/CFS STUDY!

La Trobe University ME/CFS researchers, Sarah Annesley, Paul Fisher and Daniel Missailidis are recruiting ME/CFS patients for a new ME/CFS study, which will be a larger study extending their previous work examining mitochondrial issues in people with ME/CFS.

To be eligible for this study, you must fulfill the Canadian Consensus Criteria as diagnosed by a clinician.

Participating in the study will involve attending La Trobe University in Bundoora on three occasions (once each year over three years). Even visit will take approximately 60 minutes.

Participating in the study involves:

- Questionnaires

- Standing test: participants will be asked to lie horizontally for 5 minutes, stand for 20 minutes, and then lie down for an additional 5 minutes (during this time blood pressure, heart rate and oxygen saturation measurements will be collected).

Note: we’ve had several comments about 20 minutes being a long time for patients to stand, which it is. We’ve contacted the researchers and they have said: “Patients can stop when it becomes intolerable for them, or can opt-out of the standing test if their ME/CFS is severe enough. In either case we assign them the highest severity score.”

- 40-50mL blood collection for pathology testing and creation of an infinite supply of cultured, healthy cells for mitochondrial testing per volunteer.

- Skin punch biopsy (optional).

To register for the study, contact:

Daniel Missailidis: dmissailidis@students.ltu.edu.au
Sarah Annesley: S.Annesley@latrobe.edu.au

For more information about the study: https://app.box.com/s/374tes20tq14im2g65eqxajyqjrsg2u1

Please share this post with any Melbourne ME/CFS patients who might be willing to participate!
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from
Code: 
https://www.facebook.com/pg/MEAdvocacyNetworkAustralia/posts/

If you follow the link there is more info about the skin biopsy and it shows the study is funded with $360,000
https://app.box.com/s/374tes20tq14im2g65eqxajyqjrsg2u1
What is the study about?You are invited to participate in a study of ME/CFS(MyalgicEncephalomyelitis/ Chronic Fatigue Syndrome). We will compare the function of the mitochondria (tiny compartments within cells that are responsible for generating over 90% of the cell’s energy) between healthy controls and ME/CFS patients. This will be done in two cell types, skin cells and blood cells. We aimto identify and characterise any differences in mitochondrial function between the patients and healthy controls.
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Research funder
Unravelling the mitochondrial energy deficiency in ME/CFS.(Paul R. Fisher and Sarah J Annesley)
This research has received $360,000 from the Mason Foundation National Medical ProgramMAS2018F00026.
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