The Lights need your blood! Recruiting now - important study - take part from anywhere (in the US)?

[Sasha]

Cort has a very interesting article on the Lights' research. Well worth a read - they seem to be making some exciting progress - and they've just got a $1m grant to take it further. Looks as though they're getting some important pieces of the puzzle.

There's an important opportunity to help - they just need PWME's blood and a questionnaire filled in, so if you can get your local doctor to draw your blood, you can ship it to them, I believe:

Thankfully the NIH – in this case NINDS – agrees this is exciting stuff. In 2017 Kathleen Light scored a nice $1,000,000 ROI grant to greatly expand (n=300!) their search for mutations in the mitochondria of immune cells in people with pure FM, ME/CFS and ME/CFS/FM as well as (thankfully) other diseases (migraine, depression).

The most difficult part of any study is not the technical stuff – it’s finding participants. This is a big study and the Lights are looking for patients (particularly the more severely ill) and healthy controls.

Calling “the boss” – his wife (smart man!) – up to the mic to tell the audience when the study was going to happen, Dr. Kathleen Light said the study would begin this month. They’re looking for everybody and would love to get severely ill patients. As far as studies go, it’s an easy gig – one blood draw and an online questionnaire. It involves no exercise. If you can participate please bring along your significant other to serve as a healthy control.

If you can convince your doctor to get the blood draw, you don’t have to be in Salt Lake City to be in the study. Otherwise, the study is only taking place in SLC.

If I were in the US I'd be getting my blood drawn and mailed off! I wonder if they want blood from elsewhere.

 

[Butydoc]

Cort has a very interesting article on the Lights' research. Well worth a read - they seem to be making some exciting progress - and they've just got a $1m grant to take it further. Looks as though they're getting some important pieces of the puzzle.

There's an important opportunity to help - they just need PWME's blood and a questionnaire filled in, so if you can get your local doctor to draw your blood, you can ship it to them, I believe:



If I were in the US I'd be getting my blood drawn and mailed off! I wonder if they want blood from elsewhere.

When my family and I had our blood drawn, it was required to have it drawn at their office.

Gary

 

[Sasha]

When my family and I had our blood drawn, it was required to have it drawn at their office.

Gary

So you think this might be incorrect info? Is anyone able to contact the Lights to check?

 

[Denise]

The NIH info about the study says they are looking for 300 people. I would think it'd be difficult to find 300 well characterized people just in Salt Lake City, so I am hoping there is a way people can have samples sent to the Lights.
But I can't find contact info in Cort's article or on the Bateman Horne site re. the study, the questionnaire, how to provide samples, etc.
When it is available, could that contact info be highlighted here?

 

[eljefe19]

I am in SLC. Following thread for updates.

 

[Sasha]

The NIH info about the study says they are looking for 300 people. I would think it'd be difficult to find 300 well characterized people just in Salt Lake City, so I am hoping there is a way people can have samples sent to the Lights.
But I can't find contact info in Cort's article or on the Bateman Horne site re. the study, the questionnaire, how to provide samples, etc.
When it is available, could that contact info be highlighted here?

Cort was asked that question on his blog and said this:

The Bateman Horne Center works really closely with the Lights on their studies. I would think they would be the one to contact. Their web address is here – https://batemanhornecenter.org/ and their contact information 1-801-359-7400 | support@batemanhornecenter.org. Their research portal is here – https://batemanhornecenter.org/patient-centered-research/

I think we really lucked out having a doctor of Dr. Bateman’s caliber who is very interested in research being located right next to Dr. Light at the Univ. of Utah.

 

[Sasha]

Also, Cort has kindly responded to my question about whether he was sure that people could ship their blood, given what @Butydoc had said. Cort said:

At the end of the video Dr. Light said that although only one person – from Georgia – had done it – it was possible. I think we need to find out more how it can be done…I will try and find out.

He's referring to a video in the article.

 

[Demepivo]

On the Bateman Horne website there is a page with details of current research & a contact form to fill in

https://batemanhornecenter.org/how-to-participate/

 

[Sasha]

Another response from Cort to a question about sending blood:

Dr. Light replied:

We have been successful in at least two cases were we have trained people at other locations to do the blood separation and then freeze and send the white cells on to us. The procedure for the separation used to be the standard way to harvest white cells, but this is now all done with differential centrifugation, so few know how to do it any more.

If the patient can talk their physician into it, we have a video that explains how to do the separation and centrifugation, freezing and storing of the blood. We will work with them to make sure the assay will work.

 

[*GG*]

On the Bateman Horne website there is a page with details of current research & a contact form to fill in

https://batemanhornecenter.org/how-to-participate/

I signed up to be included in studies. They know what state I live in, so we will see what works for them

GG

 

[Little Bluestem]

My doctor is 70 miles away and the local rural hospital is so crummy that I would be afraid to send anything they did.

 

[RYO]

I have contacted Dr Light and Dr Bateman. Sampling is not a simple blood draw. They can only perform at study center or possible University research center. Both Dr Lights previously worked at UNC Chapel Hill. They are early in the recruitment process. The process is much easier if you are already a patient at BHC.

 

[eljefe19]

@RYO I'm not a patient at BHC but I live in SLC and would really like to get involved with this research. An email to BHC has returned nothing. How do I get in contact with Dr Light?

 

[RivkaRivka]

Another response from Cort to a question about sending blood:

But how do we contact the Lights to have them give our doctors the info?

 

[Sasha]

But how do we contact the Lights to have them give our doctors the info?

Hi, Rivka - our best guess is via this, I think:

The Bateman Horne Center works really closely with the Lights on their studies. I would think they would be the one to contact. Their web address is here – https://batemanhornecenter.org/ and their contact information 1-801-359-7400 | support@batemanhornecenter.org. Their research portal is here – https://batemanhornecenter.org/patient-centered-research/

 

[RYO]

@RYO I'm not a patient at BHC but I live in SLC and would really like to get involved with this research. An email to BHC has returned nothing. How do I get in contact with Dr Light?

They responded to my email. I think there is phone number on their website as well. They told me process is easier if you are already patient at BHC. There is separate web page to be considered as new patient.