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SolveCFS Biobank Beginning

Kati

Patient in training
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Regarding the fact that BioBank participants will not receive individualized test results, this was a requirement by Genetic Alliance's IRB (Internal Review Board). I understand why patients, especially CFS patients, would want individualized results. I always wished that I could have results from the studies I participated in years ago. As I said, this is a requirement from the IRB, and the pros of creating a BioBank in this incredibly economic way have to be weighed against other interests/concerns. It is essential that any patient who donates to the BioBank be fully informed and give true consent. Each individual can and should make the choice based on the factors important to him or her.
On tests such as XMRV, I agree it would be great to know and important to know, especially as this is an infectious virus. However scientists who research people's blood don't always come up with spectacular results like this. Consider participating in the bio bank as a DONATION of your time and blood in order to help science figuring out ME/CFS. That's what's important. The individual results are not always important.


ETA: As some of you may know I am a RN, I worked in chemo unit unto I got ill. We did lots of clinical trials there, for new drugs for cancer. While clinical trial is the last resort for the patients, their last hope for a cure or buying them time, the oncologists make it very clear with them that the goal of the trial (especially Phase 1 and 2) is to find out more information about the study drug, how the drug works in the body, what dosage is appropriate, what dosage is toxic. What are the side effects. More doctor visits are expected, more blood work, and more time at the clinic. While they may benefit from the drug, patients know that their contribution will be for the generation to come and not for their own benefits. They don't get renumeration whatsoever for this. Just the satisfaction that they have contributed to make a better world.
 
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Creek, you need to have been diagnosed by only the 4 doctors mentioned in the document-

That's too bad because it would be great to put your endometrium to good use.
Sorry to be slow, but between having trouble reading/scanning text, and my crummy internet connection, and Firefox just dumped, I haven't been able to find where it says the 4 doctors. Which ones are they?

Pathetically,
Eeyore oops I mean creekfeet
 

gracenote

All shall be well . . .
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Sorry to be slow, but between having trouble reading/scanning text, and my crummy internet connection, and Firefox just dumped, I haven't been able to find where it says the 4 doctors. Which ones are they?

Pathetically,
Eeyore oops I mean creekfeet
Here is the list. It's from post #4 on this thread.

Lucinda Bateman, M.D., Fatigue and Fibromyalgia Consultation Clinic, Salt Lake City, Utah
Stephen Gluckman, M.D., University of Pennsylvania, Philadelphia, Pennsylvania
Nancy G. Klimas, M.D., University of Miami/Veterans Affairs Administration, Miami, Florida
Charles Lapp, M.D., Hunter-Hopkins Clinic, Charlotte, North Carolina
 
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Oh, found it.
cort said:
• Lucinda Bateman, M.D., Fatigue and Fibromyalgia Consultation Clinic, Salt Lake City, Utah
• Stephen Gluckman, M.D., University of Pennsylvania, Philadelphia, Pennsylvania
• Nancy G. Klimas, M.D., University of Miami/Veterans Affairs Administration, Miami, Florida
• Charles Lapp, M.D., Hunter-Hopkins Clinic, Charlotte, North Carolina
So... why these four, and not Peterson? I could actually get to him, maybe, but no way I could get to the others.

EDIT: Aha! Thanks, gracenote, I had just found it.
 

Hope123

Senior Member
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Creek, I suggest you contact the WPI biobank as another poster here did about her endometrial tissue and they were interested.
 
G

Gerwyn

Guest
I'm really not worried about mood disorder patients. These aren't psychologists who are going to get fed alot of mood disorder patients; they are well known ME/CFS experts whom CFS patients usually find after a long search through other doctors. Since they've been doing this for so many years these doctors know in their bones know what a CFS patient looks like. We're not going to get mood disorder patients masquerading as CFS patients in this group. I'm not worried about that.

I see Jennie pointed out that PEM is required :) . So good news. :)



This is the first time that I know of that PEM is required in study subjects - that's been a long time coming!
knowing in your bones means interpreting things according to your own preconceptions.As long as PEM is a prerequisite it should be fine and avoid the psychological patients diagnosed by the Oxford criterea and quite a number of the FUKUDA presentations
 

BEG

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How much does the biobank cost?

My doctor is on the list. I received an "invitation" via e-mail to contribute to the biobank. I haven't made my phone call yet -- crashed. But from what I read, Roy, the cost of the lab work appears to be the patient's responsibility. I learned that we can get blood drawn from any lab or go to my doctor's office and get it done. Nothing is free at that office. My question is this, would Medicare pay for it? I haven't made that call either.

Just call me DGW (dead girl walking.):tear:
 

jspotila

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How much does the biobank cost?
There is no cost to participate, although a commercial lab may charge for the blood draw. There is no compensation to donors for providing samples.

There is no payment to you for donating a sample. We will not charge you for donating a sample. The laboratory or clinic drawing the blood may request payment; however, if they know that the sample is for research, they may waive that payment.
 

CBS

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On tests such as XMRV, I agree it would be great to know and important to know, especially as this is an infectious virus. However scientists who research people's blood don't always come up with spectacular results like this. Consider participating in the bio bank as a DONATION of your time and blood in order to help science figuring out ME/CFS. That's what's important. The individual results are not always important.
I spoke with the research coordinator for the recently discussed Bateman, Light, Singh XMRV study. Unbelievably, I was told that there were a group of recruits that when presented with the opportunity to participate AND get their XMRV results declined. "They wanted to know what was in it for them."

I know that we're all tired and sick and that getting around can be really, really hard but I agree with Kati. Scientists need us to wake up and start trying to help ourselves. We need to act like a community and contribute to the efforts of those that are trying to help all of us.

You might not have any money but this is one way you could contribute. One of the biggest losses we all face on a regular basis is when we are robbed of opportunities to make a difference. I know in my area there are a number of free clinic that would do the draws at no charge if they knew that it was for research.
 
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I spoke with the research coordinator for the recently discussed Bateman, Light, Singh XMRV study. Unbelievably, I was told that there were a group of recruits that when presented with the opportunity to participate AND get their XMRV results declined. "They wanted to know what was in it for them."
I'm flabbergasted. I really can't believe that any ME/CFS patients would react like this. Pretty much any I know would try almost anything to somehow find a way to participate. Did you let them know that they have about a thousand people on tap via this web site?
 

starryeyes

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GraceNote wrote: Here is the list. It's from post #4 on this thread.

Lucinda Bateman, M.D., Fatigue and Fibromyalgia Consultation Clinic, Salt Lake City, Utah
Stephen Gluckman, M.D., University of Pennsylvania, Philadelphia, Pennsylvania
Nancy G. Klimas, M.D., University of Miami/Veterans Affairs Administration, Miami, Florida
Charles Lapp, M.D., Hunter-Hopkins Clinic, Charlotte, North Carolina
Bateman from the F&F (FIbro and Fatigue) Center? That just blew this project!
 

oerganix

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I spoke with the research coordinator for the recently discussed Bateman, Light, Singh XMRV study. Unbelievably, I was told that there were a group of recruits that when presented with the opportunity to participate AND get their XMRV results declined. "They wanted to know what was in it for them."

I know that we're all tired and sick and that getting around can be really, really hard but I agree with Kati. Scientists need us to wake up and start trying to help ourselves. We need to act like a community and contribute to the efforts of those that are trying to help all of us.

You might not have any money but this is one way you could contribute. One of the biggest losses we all face on a regular basis is when we are robbed of opportunities to make a difference. I know in my area there are a number of free clinic that would do the draws at no charge if they knew that it was for research.
By "group of recruits" do you mean ME/CFS sufferers, or "healthy controls" or what?

And, yes, I agree, do it for science, do it for 'us', do it because it's the right thing to do.
 

starryeyes

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My doctor is on the list. I received an "invitation" via e-mail to contribute to the biobank. I haven't made my phone call yet -- crashed. But from what I read, Roy, the cost of the lab work appears to be the patient's responsibility. I learned that we can get blood drawn from any lab or go to my doctor's office and get it done. Nothing is free at that office. My question is this, would Medicare pay for it? I haven't made that call either.

Just call me DGW (dead girl walking.):tear:
Now I see why the WPI actually visits PWC in their homes to collect their blood. What you're describing here Brown-eyed, is that by forcing patients to pay for their testing and forcing them to drive to a phlebotomist, the CAA are ensuring that they will not be getting blood from the sickest among us. What a shame!
 

starryeyes

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I spoke with the research coordinator for the recently discussed Bateman, Light, Singh XMRV study. Unbelievably, I was told that there were a group of recruits that when presented with the opportunity to participate AND get their XMRV results declined. "They wanted to know what was in it for them."

I know that we're all tired and sick and that getting around can be really, really hard but I agree with Kati. Scientists need us to wake up and start trying to help ourselves. We need to act like a community and contribute to the efforts of those that are trying to help all of us.

You might not have any money but this is one way you could contribute. One of the biggest losses we all face on a regular basis is when we are robbed of opportunities to make a difference. I know in my area there are a number of free clinic that would do the draws at no charge if they knew that it was for research.
CBS, do you understand that the sickest PWC cannot get out of bed? Do you understand that some PWC have NO xtra money and in fact, have to make tough choices between paying for food, shelter or medicine?

Also, I really can't believe you would ever insinuate that PWC aren't doing all we can to help ourselves.
 

Kati

Patient in training
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Now I see why the WPI actually visits PWC in their homes to collect their blood. What you're describing here Brown-eyed, is that by forcing patients to pay for their testing and forcing them to drive to a phlebotomist, the CAA are ensuring that they will not be getting blood from the sickest among us. What a shame!
I am sorry Teej, I don't think this is fair to compare WPI to CAA. CAA is trying to do something very good for all of us with the resources they got. There are mobile labs in my area to come home and draw blood. The same blood could be drawn when other blood work has to be done anyways. Your own doctor (one of the 4 chosen) could do it if they knew the patient couldn't afford it.

This is about helping the community of patients with ME/CFS, and helping the scientists help us. Please!

Please let's be positive about this new venture. It is our future. Let's not discourage any possible donors to contribute to this bank.

ETA: I am not from the US, so I 'd like to know how much we are talking about for the lab fee? What is the patient expected to pay? Is the shipping covered? How much would it cost for a mobile lab to come to you? Parhaps as a community we could contribute a fund aimed at helping those that would like to donate their blood but can't afford the costs.
 

starryeyes

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Kati, what I am saying is that I don't see how the CAA can possibly get the blood from the patients who are sickest with CFS. I feel that that is a shame.

I'd been mulling over why the WPI comes to your house to get your blood and now I know why. That's the only reason I brought them up. You're reading things into what I'm saying that I'm not.

We need the blood in the biobanks to be from the sickest among us not the people who have mild CFS or who just feel "fatigued" and show up at F&F Centers.

Surely as a former nurse, you can see the logic in that, right?
 

CBS

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CBS, do you understand that the sickest PWC cannot get out of bed? Do you understand that some PWC have NO xtra money and in fact, have to make tough choices between paying for food, shelter or medicine?

Also, I really can't believe you would ever insinuate that PWC aren't doing all we can to help ourselves.
I have been one of those people who cannot get out of bed for months on end. I lived in a storage area for two years. I get it. I'm talking about ways to feel that you are still able to contribute. It's good for a battered soul. I have had years on end where I had no money what so ever (no tax returns, no food that was not a gift, no clothes that were not donated, for years, not even the storage area to call home moved from friends couch to friends couch - some said they were amazed at how inconspicuous I was - it was a well honed skill - friends let you stay on their couch longer if they hardly notice you are there).

I also have done a huge amount of work with disadvantaged kids. One of the best things you can do for a kid with no money and a lousy living situation is to point out all of the ways in which they do have value and that they can contribute. Everyone of us matters. I wasn't insinuating a thing. I was saying that for that for those who can get to a lab that is wiling to do this for free, it just might make you feel a bit better about how shitty you feel day in and day out. If you can't get out of bed, ask a caregiver to try and arrange a home draw.

As for your insinuations about the CAA's motives, your words speak for themselves.
 

Kati

Patient in training
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Please read my ETA above.

WPI has received funding from MEA in UK in order to do this study. This is speculation, I don't know really, but WPI gets much more private funding than CAA including a very generous 50 000$ from a mother and son team. Drug companies are likely behind them by now.

CAA is trying really hard, and despite the bad moves they have done in the past, they are trying to do good NOW.

I'd be ready to contribute to help the people that can't afford costs of blood draw. We need this bio bank. We need to help ourselves at this time.