New South Australian study starting

[taniaaust1]

I just had a phone call from the hospital (they managed to chase me up thou I had a new address and new phone number throu my hospital emergency family contact number ) and a follow study is being done for one which was done 7 years ago (it was published, the low blood flow spect scans etc).

They want to see if the abnormalities they found in those in the original study, if things have changed. So I'll be getting another MRI, spect scan, 24hr hoitler monitering (great as that is how I originally picked up my orthostatic hypertension) etc. They have also added in a whole lot of new test things they are going to add to their study, they'll be looking at the optic nerve, neuropsych testing, wearing of a motion dectector etc (I cant remember what else she said).

Anyway, Im excited to hear that all this other stuff has been added to their long term follow up study they decided to do. (I think they will be horrified at my results on my motion detector, they certainly wont be getting the normal persons inactive results there).

I thou will have to be off all my drugs/supplements for a couple of weeks (which is going to suck but yeah worth it in the name of science).
.............

I dont remember if I mentioned in in the other thread, I missed out of the part B of the other study going on in this state right now (into fatty acids) which needed less people then the part A I was in this year/end of last year? (the follow up research of the original carnitine study which I also had been in). That study is still going on.

 

[Little Bluestem]

Good for you for being willing to forgo your drugs/supplement to continue in this study. Since it is a follow-up, does that mean they are not accepting any new participants?

 

[taniaaust1]

I dont know but maybe not.. I got the paperwork for the study come in the mail today (that was fast seeing they only rang me yesterday). The paperwork explained why this follow up study and some of the findings from the first study done in 2007 which was published, well they didnt publish all the findings!!! and something quite shocking was found. Ive been upset today over what I read (i think its the most disturbing thing Ive read coming out from a study so far).

The letter states they are currently submitted for publicification so hopefully all you guys will hear about it soon (I dont want to say the further findings in case it interferes with the rest of the research being published.. unless I had permission to do so). Anyway, there is some quite disturbing stuff and hence why they wanted to do this follow up study for vertification. Just say if correct, it would show this illness is progressive and they can tell how long someone has been sick for by what it has done.

They want to see by the new study if the 25 participants in the first study, if our graphs of what they've found (they've made a brand new finding I think as I havent heard this one before), if follows the same pattern as what appeared in the first study eg those of us who were at the 7 year point last study 7 years ago..should be now where the ones who had ME/CFS for 14 years were showing their level of damage on the test result (they graphed us all out and it matches length of illness with their findings..the longer you've been sick, the more of this abnormality you have.. all except one person who didnt fit the pattern.. maybe a wrong diagnoses? it was the person who had only been diagnosed 4 years before).

They may of found the cause of nearly all the dysfunction of ME/CFS (but not the cause of what has caused that cause!!) and a way to tell who has this illness and who hasnt by a scan.

Fingers crossed that their submission is accepted and you will see this further reseach very very soon, which has triggered off this follow up study Ive been called back for.

Anyway..this is all I feel comfortable in saying without feeling like what info Im giving could interfere with the research acceptance into the journal.

(Note all the ME/CFS cases in this study were canadian consensus criteria ones so we are talking about ME people here)

 

[ukxmrv]

Incredible Tania. Thanks so much for letting us know what you can.

 

[Seven7]

What kind of Scan?

 

[taniaaust1]

I just found out that the stuff in the letter I was sent has been published including the graph (so I dont know what is the new paper then which they have just submitted is about, we'll have to wait and see what that is about). The other study published was so confusing for me to read previously that I obviously didnt understand it and hence missed the actual implications of it including that midbrains are shrinking eg the longer one has had the illness the more the shrinkage (our brains are shrinking 1% per year). Those with CFS have a smaller midbrain.

(I'll put a copy of the graph Im refering to up tomorrow).

"The midbrain, located at the top of the brainstem between the prmitive parts of the brain and the more advanced areas, regulates many aspects of overall brain function and is also the structure which pass most connections between the brain and the rest of the body. Thus, a problem in the midbrain could explain most, if not all, of the symptoms of CFS."

 

[taniaaust1]

Here's copy of graph and some info from original study http://i1190.photobucket.com/albums/z458/taniaaust1/brainstudyinfo_zps76f91d81.jpg

 

[aimossy]

Here's copy of graph and some info from original study http://i1190.photobucket.com/albums/z458/taniaaust1/brainstudyinfo_zps76f91d81.jpg

Good on you tania!!!

 

[Sherrie]

This the study with Kwaitek, Barnden etc? I was in their next study in 2010 we had an MRI, spect, 24 hr blood pressure, ankle bracelet for a week to measure activity and the neuropsych testing. Is that the one they just published?

 

[Snow Leopard]

Yes, the original paper (of the 2007ish study, published in 2011) was this:
http://www.mecfs-vic.org.au/sites/www.mecfs-vic.org.au/files/Kwiatec NMR CFS.pdf

I remember attending a presentation by Dr Kwiatek back in 2011 and I remember asking whether there was an effect of the duration of illness and believed that their findings would be stronger if they could show this. He seemed quite pleased that someone had asked this and said there was indeed an effect. Though I got the impression that it had not yet been shown in a rigorous/strong statistical way if you know what I mean.

If the 2010 and later studies show the same effect, it will be very interesting!

 

[aimossy]

yeeeah! woop woop Australia!