Sth Australian ME/CFS study still after people

[taniaaust1]

http://sacfs.asn.au/news/2016/02/02_13_sahmri_calling_for_research_participants.htm

Ive just been in contact with the researcher running the above study and they are still wanting more participants (participants will get $100 voucher).

 

[anciendaze]

Off-topic, but funny. My first response on reading title was "OMG! The Sith are in Australia and hunting ME/CFS patients. Where's my lightsaber?"

 

[Mel9]

Off-topic, but funny. My first response on reading title was "OMG! The Sith are in Australia and hunting ME/CFS patients. Where's my lightsaber?"

https://myaccount.nytimes.com/mobil...mSnpjFbELcuI6WZ3pVRivZrVvw_6E8y2GdHHpM8Q&_rdr

You have got me giggling.
The Sith!

 

[trishrhymes]

Looks like a potentially interesting study. Do you know what definition of CFS they are using?

I note they are going to do DNA testing as well for future studies - I wonder whether they are going to collaborate with other ME/CFS studies around the world to make one big DNA study - a great case for data sharing and co-operation.

Are you taking part, Tania?

It's good to see something happening in my home state, even though I haven't lived there for decades.

 

[taniaaust1]

Looks like a potentially interesting study. Do you know what definition of CFS they are using?

I note they are going to do DNA testing as well for future studies - I wonder whether they are going to collaborate with other ME/CFS studies around the world to make one big DNA study - a great case for data sharing and co-operation.

Are you taking part, Tania?

It's good to see something happening in my home state, even though I haven't lived there for decades.

If there is a way I can I will, being homebound at this point it looks like I cant meet the getting to the hospital requirement for the study. I don't know what diagnostic criteria they are using for that study (I wish I'd thought to ask the researcher while on the phone, many of the studies here use the CCC)

We have at least 3 ME/CFS studies right now going on in this state... unfortunately one of them is a bad study, discuised GET gaming study. Ive taken part of 3-4 ME studies here in the past.

 

[Lolo]

From http://sacfs.asn.au/news/2016/02/02_13_sahmri_calling_for_research_participants.htm

What are we going to do?

• Ask you questions regarding your medical history (past and present), including mental health, your mood, food intake, smoking and alcohol consumption.
  
• Assessment part 1: An initial interview and questionnaires, then collect 19mls of your blood for a health assessment (Approximately 3 hrs.).
  
• Assessment part 2 (9.5 hrs. - 8am to 17.30 hrs.): Complete a DEXA scan (dual-energy X-ray absorptiometry) and take bloods across a normal day (9am – 5pm), taking blood samples every 7 minutes. A cannula will remain in your arm throughout the day allowing us to take the samples easily. You will complete some visual scales to indicate how you are feeling each hour. A genetic sample will be taken from this phase of the assessment (phase two). Please note that the genetic sample is for use in later research into CFS, and will help us develop a genetic database for this disease. We will provide you with food, drinks and entertaining material (iPad / magazines / TV).

Well that excludes the worst of us.