Volunteers in Adelaide, South Australia for Carnitine/Fatty Acid study

[Sherrie]

Assessment of Fatty Acid/Carnitine Homeostasis in Patients with Chronic Fatigue
Syndrome/Myalgic Encephalomyelitis (CFS/ME)

From the keyboard of ME/CFS Australia (SA) president, James Hackett


ADELAIDE ME/CFS RESEARCH - CALL FOR VOLUNTEERS

Can you help? Would you like to be involved in some exciting ME/CFS extended research in to carnitine, right here in Adelaide? This research relates to CFS sufferer's mitochondrial dysfunction.

We were very pleased to hear about this extended study from Dr Stephanie Reuter Lange, from the University of South Australia, School of Pharmacy and Medical Sciences. Stephanie was a speaker at one of our seminars last year. She discussed the results of their earlier study:

Here are the details:

STUDY VOLUNTEERS NEEDED

Healthy Subjects and Patients with Chronic Fatigue Syndrome

We are seeking volunteers to participate in a research study investigating the levels of carnitines and fatty acids (important compounds for energy production) in patients with chronic fatigue syndrome.

The study consists of two parts: Part A (a single blood sample) and Part B (breath testing). Volunteers can choose to take part in Part A only or both Part A and Part B of the study.

Blood samples can be collected at your local IMVS collection centre. Breath testing will be conducted at the University of South Australia, City East Campus.

Study participants will be reimbursed ($20 for Part A and $100 for Part B) for out-of-pocket expenses, inconvenience and time involved.

For more information, please contact Dr Stephanie Reuter Lange via email (stephanie.reuterlange@unisa.edu.au) or call +61 8 8302 1872.

The Participant information Sheet can be downloaded from the link at the bottom of this page:
www.sacfs.asn.au/news/2012/09/09_03_study_volunteers_needed.htm

 

[Snow Leopard]

Thanks Sherrie.

 

[August59]

This could be a very interesting study

 

[taniaaust1]

You beat me too it .. I just went to post a thread about this study which I just found in my home mail. I participated in her first study and at that time put down I'd like to partake in future studies so they'd just contacted me about this.

I really urge anyone who is able to volunteer for this study to do so. For the first study they did.. they did post me all the results of the blood test .. a whole page of my carnitine results for the different carnitines, there was like 34 different types I got results back for (thou no analyses was included so I still dont understand just how normal or abnormal my results were..but its still a handy thing to have as maybe one day I can find someone who can explain this stuff to me.. it was advanced testing so wasnt testing which is done at the doctors), along with a copy of the article when it got published in a journal.

The B part of this study sounds really interesting but I dont think I will be able to qualify for the B part of this latest study due to recently trialing a cholestrol lowering drug for 4 days but I'll see.

"The results of this study will be used to determine the possible application of this information as a diagnostic criteria for CFS".

 

[Sherrie]

I sent an email to say I am interested. I found it in the me/cfs (SA) newsletter, it had been sitting there in a tab and I forgot about and just happened to click on it today by accident and noticed the study.

 

[Sherrie]

They still need a large number of both patients and healthy controls so please share.

 

[taniaaust1]

I have done all the paperwork and sent it back to partake in this study so now just waiting to hear back to find out if anything I take or I have coexisting would disclude me.. (as Im taking so many different things.. she ended up sending me all the forms to fill out rather then just the consent form I'd got originally sent due to previously qualififying for her other CFS study).

Unfortunately it took me 2 and a half hours to fill out her forms (due to all the meds/supplements I take and there was A LOT of forms) and caused me to crash (so I ended up spending the next day in bed ill due to that form filling). But anyway.. Im happy, Ive got those forms all in now and Ive also be able to copy a couple too as they will enable me not to have to spend so much time on other forms I need to fill out to see a another CFS specialist.

I hope some of the questions on her forms dont get me discluded from that ME/CFS study.. eg it asked if fatigue was in my top 3 symptoms.. which in fact it isnt (its about my 5th or 6th symptom as some of my other ME symptoms are even more severe). I wonder why they asked that question if it isnt going to matter to them if fatigue isnt in the top 3 of ones symptoms. (when will people be more aware that ME is often a large symptom complex so fatigue may not be one of ones top symptoms.. if i end up being discluded on that ground it will show this study is just a CFS one with a fatigue focus in which like many CFS studies, those who have ME are being discluded).

Anyway.. Im waiting to see.

 

[taniaaust1]

I was just thinking.. maybe I should send her a copy of the new International consensus primer for ME as maybe then they could note during their study if there is any differences too between those who meet that definition and the others with the CFS. As maybe then they would find the abnormalities they are studying even more startling?

 

[Sherrie]

Hey Tania, hope you're feeling better

She sent me some forms and a questionnaire as well. I'm not taking anything at all at the moment because I got sick of taking a bunch of expensive stuff and not knowing if it was even helping. So that makes it easier for me, although now of course I am waiting for my part to be done so I can try some things again. I am not looking forward to the 8 hours in the uni.

 

[ukxmrv]

People do not need to be Adelaide or to travel to Adelade. I emailed to see if anything could be done remotely as I have a friend close to that area. No bebound patients.

 

[taniaaust1]

UPDATE

Ive recieved a letter back sayng they recieved back the things I'd had to fill out from them etc etc.. sounds like Ive been accepted into the study.

The main person for this study thou is going on maternity leave soon so its being put into the hands of two others (who I assume were working with the one who was going to do it) which also says they are from the Nutritional Physiology Research Centre (I either missed reading that before or that's new info to me).

The letter says there is going to be a short delay as they are having trouble getting the blood sample request forms they need. But anyway other then those things, sounds like that study is on track... just some slight delays etc

 

[Sherrie]

I received my form for the blood tests today so getting them done in the morning.

Tania, I was about to ask you if you were able to get your results after the test but I see you already answered my question. Did it take long from having the test done and getting your results?

 

[taniaaust1]

Ive got my form for the blood tests too now. I'll try to arrange to go and have them done next week as I'll need my support worker to take me to the lab.

Sherrie.. It took AGES before they sent me the results after the testing in their other study. I actually had come to think that they werent going to send them as it was that long (I havent got much time sense at all but it may of even been as long as a couple of years.. but then one day out of the blue, they just came). So I suspect you are going to have to be very patient. Be aware that it was ground breaking research so thou I got all the carnitine results of 35 different carnitine kinds, that the results didnt come with any indications of what is normal range for each and when I tried to search online, I couldnt find this info.

 

[Sherrie]

I was searching last night and there was lots of information on the Acylcarnitine Profile when I was searching last night so hopefully this time it will be a bit easier. I sent them an email to let them know I did the test this morning and asked them if they could send me the results when they are available.

 

[Sherrie]

Also, they emailed me back this afternoon and she said the second part of the study should be ready around late Jan - early Feb.

 

[August59]

I was searching last night and there was lots of information on the Acylcarnitine Profile when I was searching last night so hopefully this time it will be a bit easier. I sent them an email to let them know I did the test this morning and asked them if they could send me the results when they are available.

I had an abnormal "acylcarnitine profile" when I went to the Mayo Clinic and the just shruged their shoulder and said it wasn't nothing.

 

[Sherrie]

Did anyone here back about when the second part begins?

 

[MeSci]

This seems a worthwhile line of research. When I was looking into what supplements to try with my gut alkalising diet, I came across this 2011 paper by Reuter and Evans:

http://www.ncbi.nlm.nih.gov/pubmed/21205027

So my supplement regime includes acetyl-l-carnitine with alpha lipoic acid (Lipo-Carn), and an omega-3 supplement. My muscles started strengthening significantly after I started the Lipo-Carn, which was an effect predicted by some sources, but obviously I can't be certain of cause and effect.