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CFS Research Study with Lumbar Punct - Upcoming CFS study with Dr. Baraniuk at Georgetown University

B

Bob

Senior Member
Messages
16,455
Location
England (south coast)
These details are taken from Dr. Baraniuk's department's website and were posted on the website on July 2nd 2015:
We are currently recruiting for 2 Chronic Fatigue Syndrome (CFS) studies:

CFS Exercise and Brain Scan Study

CFS Research Study with Lumbar Puncture

Contact Us for details and eligibility!

Email: baraniuklab@gmail.com

Phone: 202-687-8231
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CFS Research Study with Lumbar Puncture
posted Jul 2, 2015, 9:32 AM by Baraniuk Lab [ updated Jul 6, 2015, 9:35 AM ]

We have performed lumbar punctures (“spinal taps”) on CFS, fibromyalgia (FM), and Persian Gulf War Illness (PGI) subjects and a group of healthy volunteers. The CFS and related groups had a unique set of proteins in the fluid surrounding their brains. This is very exciting because it is strong evidence that CFS, FM and PGI are “real” diseases. The proteins we found may turn out to be diagnostic markers for these syndromes, and become part of a test for CFS/FM/PGI illnesses. They also offer insights into the molecular mechanisms that go awry, and point towards potential treatments. First, however, we must perform more spinal taps on participants with CFS and healthy control volunteers.

We offer a new, paid, clinical research study with a 1 night stay at Georgetown University Medical Center, lumbar puncture and other, more simple tests. We are recruiting 100 participants with CFS and 100 healthy control subjects who want to help find a cure. Contact us at 202-687-8231 or by e-mail at baraniuklab@gmail.com.

Healthy participants are also invited to participate by having lumbar punctures. Healthy volunteers are essential to be able to identify new, significant diagnostic markers that can distinguish between chronic fatigue syndrome and a normal state of health. These differences will point towards the cause(s) of chronic fatigue syndrome and potential new ideas about treatment and diagnosis.
Click to expand...

These details are taken from here:
https://sites.google.com/a/georgeto...ouncements/cfsresearchstudywithlumbarpuncture

Recruitment details for all ongoing trials can be found here:
https://sites.google.com/a/georgetown.edu/baraniuklab/announcements
 
Never Give Up

Never Give Up

Collecting improvements, until there's a cure.
Messages
971
Misfit Toy said:
@Bob -thank you for this. I am not too far from Georgetown, but unfortunately too sick...the irony. But so great to find this research is being done.
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"We offer a new, paid, clinical research study with a 1 night stay at Georgetown University Medical Center, lumbar puncture and other, more simple tests." It's kind of like, "Look at all of these great prizes!"

I bet your CSF would be of more value to them than that of a person who is less ill. Is it that you just can't get yourself there, or are you afraid of the reprucussions? If it's the former, I wonder if they would provide you with transportation?
 
Jonathan Edwards

Jonathan Edwards

"Gibberish"
Messages
5,256
This looks like a well planned 'second cohort' study from Jim Baraniuk. I am very impressed by his approach. I hope they recruit the patients they need. 100 is a good number. I would certainly encourage people to try and be involved if it is practical. I am a bit far away to be a normal control and I sometimes wonder if I qualify anyway !
 
Misfit Toy

Misfit Toy

Senior Member
Messages
4,178
Location
USA
@Never Give Up -so it's 2.5 hours away from me. So, it's close but not that close. I would have to stay overnight with no one to drive me. When you have a lumbar puncture...you are supposed to remain horizontal for about 24 hours afterwards.....it would become expensive to stay in and around DC.

Then...if I had a problem or developed any kind of massive headache due to said puncture, I would be up shit's creek because there would be no one to help out. So...I agree, it could be beneficial...if I had lots of money, a helper, etc.

The problems with being alone and not having the financial means......
 
Never Give Up

Never Give Up

Collecting improvements, until there's a cure.
Messages
971
Misfit Toy said:
@Never Give Up -so it's 2.5 hours away from me. So, it's close but not that close. I would have to stay overnight with no one to drive me. When you have a lumbar puncture...you are supposed to remain horizontal for about 24 hours afterwards.....it would become expensive to stay in and around DC.

Then...if I had a problem or developed any kind of massive headache due to said puncture, I would be up shit's creek because there would be no one to help out. So...I agree, it could be beneficial...if I had lots of money, a helper, etc.

The problems with being alone and not having the financial means......
Click to expand...
Ah, I understand. This disease sucks!
 
Never Give Up

Never Give Up

Collecting improvements, until there's a cure.
Messages
971
OK, so I'm being a total busy body today, I just sent Dr. Baraniuk's lab the following email. I'll let you know if I hear anything back. Not that you want a lumbar puncture @Misfit Toy, just in case it generally helps to further the cause.

Hi,

I just wanted to say that there are people who would like to participate in your studies, but are too ill and poor to get there and back on their own. Those would be the same people who would be likely to have the most telling test results.

Any chance you could find a way to help them to participate?

Best regards.
 
SOC

SOC

Senior Member
Messages
7,849
Excellent research! We need a follow-up study on the CSF studies and these folks know what they are doing. I'd be very happy to participate if I can manage it.

Sounds like an excuse to go visit my newly-married daughter who will be living alone in DC for about 3 months before she can join her new husband in their new home in Canada. :)

If I can only find a way to afford airfare to DC and back. :(
 
Misfit Toy

Misfit Toy

Senior Member
Messages
4,178
Location
USA
@Never Give Up -I like your tenacity! Good for you...awesome!!!! Thank you, btw. Very cool.

I agree, @Sushi -this is not the same thing but when I had back surgery years ago, I had spinal leakage. I couldn't even stand up. I was in bed for days and if I walked or got up...my head was ready to explode.

That's another reason I am nervous about a lumbar puncture. Don't want to have to crawl to the bathroom...
 
D

duncan

Senior Member
Messages
2,240
I tried to enroll, but I needed them to pick up my stay for the night directly preceding my participation, and then the night after. The reason was I had to travel far and long. They tried to accomodate me, but could not.

Travel is an issue. So too is cost. But if I could swing it, I would.

I once was in a study where I had a lumbar puncture, then traveled back home the next day via train. On the 4-hour train ride I was hit with a LP headache. Worst headache I've ever had. I had only tylonal to take, as that is all you can take after an LP. It wasn't enough.
 
Never Give Up

Never Give Up

Collecting improvements, until there's a cure.
Messages
971
The Baraniuk Lab has responded:

We understand that there are people who want to participate, but are unable to do that because of financial reasons. We do provide $200 reimbursement for participating in the CFS study, and $100 for participating in the Lumbar Puncture study. If a participant completes both studies, which can be done in the same time frame, then they will be reimbursed for both studies. Plus we also provide up to $300 for travel expenses including plane tickets, taxis, or hotel stays. On top of that we try to schedule people so that they can spend two overnights in our research facility so that they won't need to spend two of their nights in a hotel. If someone is still unable to participate due to finances we talk to them on a case by case basis. We do everything we can to aid in people participating in our studies.

Are you interested in participating in one of our studies? If so, I can send you our informed consent which outlines the study as well as study and travel reimbursement.

Kind Regards,
Madison Keefe

I am very impressed with their understanding of the challenges faced by PWME, and their 2 night lab stay plus financial assistance accommodations. They are working hard to get at the meaningful data. It must be a considerable expense.

Does this help anyone to participate?
 
Misfit Toy

Misfit Toy

Senior Member
Messages
4,178
Location
USA
@Never Give Up -if you ask me..that's a lot that they are willing to do. I think it's great. I appreciate this. I was not expecting this. Meaning that they would cover all of that.

After much consideration, here is why I am not going to do it;

I had surgery in January and have not been the same since. I went from working part time, living and going out to being mainly indoors and sometimes bed bound. I do go out and I went to the movies twice last week, but I am so sick and I force myself because I am losing it. All from this surgery. My body can't take on anymore prodding, probing, etc. I had anesthesia, nerve blocks, I have had never ending tests since to now find out what is wrong...etc. I am exhausted.

I couldn't handle the puncture and if something went wrong due to being as ill as I am...I would be angry at myself for having put myself in a line of fire.

I wish I was better because I would be all over it, but at this point in time...I need to stay away from any more hospital type procedures. A lumbar puncture could reveal so much so I am BUMMED.

One good thing; my rheumatologist is sending me for a brain MRI to see if I have white lesions on the brain due to having Sjogrens and CFS and having a total switch in my brain, again, since the surgery.

Anyway, thank you so much for your efforts and you are a trooper for being so proactive! And...a very positive person.
 
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