Please note that it is possible that I misunderstood the information.
Dr Marshall-Gradisnik from Bond Uni explained about the research.
She was pleased that doctors from Sunshine Coast, Brisbane and Gold Coast enquired about the research. There is 150 participants from the Gold Coast, or she just completed the last batch of blood samples from them. And there is about 80 people in the room. And it seems she is still looking for more volunteers.
She emphasised strongly on transparency and equity of the research. She assured us over and over that she is honest and straight forward with us. There will be no hidden agenda or secrecy. Any info she can legally allowed to give us, she will share it with us. She had to make sure the participants know the objectives of the research and what they can expect from it. That is the research guideline required by the law.
She explained that the research would not practically benefit us, but it will help people who would develop the condition in the future. And she was looking at me when she explained this.
From the way she talked, I gathered many people wish to volunteer in the hope of getting the diagnose. It refreshed my memories. It feels like a lifetime ago when I was desperate to find the answer for my unwellness. And how stressful and miserable it was not getting any answer or not being taken serious.
Dr Marshall-Gradisnik made it clear that she is not going to diagnose. And she made it clear that the research is not about the treatment.
Some people in the crowd were armed with knowledge. Naturally, they raised the questions about XMRV. Basically, they are not really interested in XMRV. She only heard about the British study during the week and she has no knowledge of politics behind it. Someone mentioned that university in New South Wales has been researching retrovirus for a while.
Dr Staines seems to know more about XMRV than Dr Marshall-Gradisnik and quickly commented that he is not convinced that XMRV is the culprit of ME/CFS. He is keeping his eyes on it, but he is “underwhelmed” at the moment. I guess it is fair enough. There should be more replicate studies done to prove the strong link between XMRV and ME/CFS. So, everybody should wait for now.
I wasn’t sure if it is the future study or if this will be undertaken simultaneously with this research, but she mentioned that some samples are randomly selected to be tested for the XMRV. That was interesting enough for me.
She continued on and explained the research process. She is going to select 150 samples from South East Qld, and another 150 from Darwin area. Each 150 samples will be allocated into three categories, CFS, FR (fatigue related condition), and control (healthy sample). I believe much more pesticide sprayed by the air in Darwin for mosquito control. I wondered if government would be in trouble if spraying pesticides is proved to be making people ill and disabled.
They use American CDC criteria (Fukuda criteria) of selecting CFS. She is not going to use Canadian Consensus criteria. People who doesn’t fall into CFS category yet suffering from fatigue related condition will be allocated to FR.
They are going to collect samples every 6 months for 2 years. At the third year, two big companies will jointly develop the “diagnose kit”.
The blood sample collection will be organised about 5 people at a time because they have to analyse the sample within 2 to 3 days. The volunteers will be requested to attend the session early in the morning, between 9 and 10:30. (Well, it is early for me…) Since hormone value changes during the day, they want to collect the morning sample when the hormone value is rather accurate/stable.
Some people asked if they could organise the collection closer to their home. They came all the way from northern Brisbane. Dr Marshall-Gradisnik advised that she is negotiating with Brisbane hospitals about it.
At each collection session, she will give us the individual analysis as well as group analysis. But we will have to sign secrecy agreement. She will allow us to share the info with a treating doctor.
People asked questions about expected result. But she couldn’t say. One person asked which locality he would belong as he grew up in Darwin, but currently lives in Brisbane. She brushed off the question with a joke that she would put him in Darwin category to keep SEQ results desirable.
She announced that there were sandwiches and drinks at the back of the room and encouraged people to network as we might get isolated from the illness. And if we wish to participate in the research, there was a questionnaire to fill in. She will go through the questionnaire next week and will advice the date and place for the blood collection.
I was not sure if I wanted to participate.
To me, it seems to be a big commitment as just coming to the Auditorium was such a hassle. I would be really struggling on the morning I have to come for the blood collection.
On the other hand, I’m very curious. And I recognise my condition is more like severe/moderate now rather than very severe/severe. So, if I wanted, I could push myself to be here. There is nothing happening in my life, therefore this could be a good distraction for me even my condition flares up after each session.
I filled the questionnaire anyway. I may not be selected and I may not need to worry about it.