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SolveCFS Biobank Beginning

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Robin

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Bateman from the F&F (FIbro and Fatigue) Center? That just blew this project!
No, Tee, I think that is someone else. Lucinda Bateman is one of the CFSAC members who stepped down this term. Her sister had CFS and then leukemia, and passed away from complications of a stem cell procedure. Dr. Bateman has her own clinic in Utah, and eloquently described the financial and career difficulties of running a CFS practice. She's very respected.

As far as the limitations put on the blood samples, it's a good thing. They need to be sure that people really have CFS! I live near Dr. Bell, and even the sickest bedridden people in my area found a way to get seen by him. I'm sure the doctors in these practices see some of the sicker people, too. And, don't forget that CFS can fluctuate in people. I'm severe and bedridden now but was moderate for a long time -- it doesn't mean I'm any less worthy as a research subject at different parts of the spectrum.

CBS, that is horrible that people wanted $ to be involved in such an important study. Shame on them!
 

starryeyes

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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, as a caregiver to try and arrange a home draw.

As for your insinuations about the CAA's motives, your words speak for themselves.
Shane, I appreciate you explaining this further but your former words were directed at all of us. That's why I'm glad you clarified this. You wrote:

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.

I'm not sure what your last sentence means but I want to reiterate that I am not suggesting that we kill the CAA off, however I understand why people here are feeling that way. I want them to be the best they can be and I want them to be here for us and for the children with CFS.
 

CBS

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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.
PWC! I was concerned that I had the means to get tested, that there was another XMRV study I am liely to be asked to participate in and that by being included inthis study, I had taken the place of someone else with CFS.
 

starryeyes

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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.
I agree that the WPI has more money but I'd rather see the CAA stick to what they can do well and not do something as important as creating a biobank for CFS in a shoddy, offhanded and potentially harmful way.
 

CBS

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CBS, that is horrible that people wanted $ to be involved in such an important study. Shame on them!
Robin, I don't know what they wanted. I just know that some declined even given that they would be given their results. Perhaps they did not see any value in an XMRV result at this time.

ETA - these folks were not being asked to do the exercise portion. I can also see people not wanting to know (one way or the other) when so much seems up in the air on XMRV.
 

starryeyes

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No, Tee, I think that is someone else. Lucinda Bateman is one of the CFSAC members who stepped down this term. Her sister had CFS and then leukemia, and passed away from complications of a stem cell procedure. Dr. Bateman has her own clinic in Utah, and eloquently described the financial and career difficulties of running a CFS practice. She's very respected.

As far as the limitations put on the blood samples, it's a good thing. They need to be sure that people really have CFS! I live near Dr. Bell, and even the sickest bedridden people in my area found a way to get seen by him. I'm sure the doctors in these practices see some of the sicker people, too. And, don't forget that CFS can fluctuate in people. I'm severe and bedridden now but was moderate for a long time -- it doesn't mean I'm any less worthy as a research subject at different parts of the spectrum.
Robin, that makes me feel better however this is the first doctor who is supplying blood for the blood bank and while this doctor may really want to help us, I am concerned that her patients will not all really have ME/CFS:

• Lucinda Bateman, M.D., Fatigue and Fibromyalgia Consultation Clinic, Salt Lake City, Utah

Also, I'm all for the limitations they've put on the PWC they're collecting blood from. That's one of the things I think the CAA are doing right as I stated earlier in this thread.
 

CBS

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I agree that the WPI has more money but I'd rather see the CAA stick to what they can do well and not do something as important as creating a biobank for CFS in a shoddy, offhanded and potentially harmful way.
The biobank is exactly what they can and will do in a professional and coordinated way that maximizes every cents. Why the apparent assumption that it will be "shoddy, off handed, and harmful?"

As for your earlier concerns regarding Dr. Bateman, I see that Robin has already commented on the issue but there is not a more committed, caring and professional CFS specialist in the world. She left a lucrative private practice to focus on CFS at great financial and personal cost. Her CFS work is all at a huge financial loss because as a group of patients, we take so much time for accurate histories, testing and detailed counseling/medication regimes. Dr. Bateman is beyond reproach. It's careless comments like those you directed at Dr. Bateman that raise doubt about the best amongst us, divide the community and make all of us look like we're shooting from the hip about things we know nothing about.

Teejkay, Please be more specific about your concerns regarding Dr. Bateman.
 

CBS

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Robin, that makes me feel better however this is the first doctor who is supplying blood for the blood bank and while this doctor may really want to help us, I am concerned that her patients will not all really have ME/CFS:

• Lucinda Bateman, M.D., Fatigue and Fibromyalgia Consultation Clinic, Salt Lake City, Utah
She has never claimed that ALL of her patients have CFS. She does know the difference between a chronically fatigued patient and someone with CFS and she is very clear about the distinction.

Go back and listen to her talk on December 2, 2009 about XMRV: http://www.offerutah.org/batemanxmrv.htm. She addresses this very issue. Until then, I suspect that saying much more might not help your credibility.

ETA - Dr. Bateman sees fibro patients in part to fund the financial deficit created by seeing so may CFS patients!
 

starryeyes

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Shane, I'm not shooting at the hip. I'm discussing these issues on a forum, not publishing them in a prominent magazine.

If I have a misunderstanding just tell me. I don't believe I know it all. I'm sharing my perceptions and feelings about things.

I do realize now who Bateman is thanks to Robin's post. I recall seeing her speak at several CFSAC meetings and I agree that she is very dedicated. What concerned me was seeing the name "Fibro and Fatigue" Center. I have a right to be concerned about that and if you know anything about them I can't see how you wouldn't agree.
 
R

Robin

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Robin, that makes me feel better however this is the first doctor who is supplying blood for the blood bank and while this doctor may really want to help us, I am concerned that her patients will not all really have ME/CFS:

Lucinda Bateman, M.D., Fatigue and Fibromyalgia Consultation Clinic, Salt Lake City, Utah

Also, I'm all for the limitations they've put on the PWC they're collecting blood from. That's one of the things I think the CAA are doing right as I stated earlier in this thread.
She's not affiliated with the Fatigue and Fibro Centers. That's just the name of her clinic -- they sounds similar, that's all.

See, the people you're thinking of have no offices in Salt Lake City.
 

CBS

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Lucinda Bateman, M.D., Fatigue and Fibromyalgia Consultation Clinic, Salt Lake City, Utah
This may be an error on the part of the CAA but for what it is worth, Dr. Bateman's clinic is called the "Fatigue Consultation Clinic." The website is: http://www.fcclinic.com/

Fibro is not in the title even though she sees fibro patients.
 

starryeyes

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Thank you Robin. I do recall who Dr. Bateman is now that you explained above and I do feel that she does know the difference between true ME and fatigue.

I'm glad I brought it up so you could clear it up for me. My reaction was intense when I thought this was one of the F&F Centers because this is really important. The biobank is more important than any study that uses it imo.

Shane, so what if I make a mistake here? Does that mean that you can no longer trust anything I have to say?

Irregardless, I'll say what I believe and what I think here and I want input and if necessary correction from others whether they agree with me or not so thank you. No one ever loses their credibility with me if they make a mistake as long as they're willing to admit it.

I was wrong about Bateman and therefore I do feel better about the biobank the CAA is creating. Also, Robin says the sickest patients will find a way to drag themselves there.. I really do hope that happens.
 

starryeyes

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Quote Originally Posted by teejkay View Post

Lucinda Bateman, M.D., Fatigue and Fibromyalgia Consultation Clinic, Salt Lake City, Utah

Shane wrote:This may be an error on the part of the CAA but for what it is worth, Dr. Bateman's clinic is called the "Fatigue Consultation Clinic." The website is: http://www.fcclinic.com/
Fibro is not in the title even though she sees fibro patients.
Okay, thank you for the clarification because it said Fibromyalgia right there in bold. I quoted this from someone else here. Considering the other word in the title is "Fatigue", I think I had every right to react strongly.

I care about what happens to all of us, you know? That's why I'm so passionate about this.

I must say, Shane. You hold people with brainfog to an impossible standard if you think we should never make a mistake. :tear:
 

CBS

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Thank you Robin. I do recall who Dr. Bateman is now that you explained above and I do feel that she does know the difference between true ME and fatigue.

I'm glad I brought it up so you could clear it up for me. My reaction was intense when I thought this was one of the F&F Centers because this is really important. The biobank is more important than any study that uses it imo.

Shane, so what if I make a mistake here? Does that mean that you can no longer trust anything I have to say? Do you give room for people to be human or are the only people you believe to be credible completely perfect?

Irregardless, I'll say what I believe and what I think here and I want input and if necessary correction from others whether they agree with me or not. No one ever loses their credibility with me if they make a mistake as long as they're willing to admit it.
Teejkay, I don't expect you to be perfect. I have no illusions that I don't often make mistakes. I know Dr. Bateman (I met with her just last week) and your legitimate concerns about the Fibro & Fatigue Centers lead to a portrayal of Dr. Bateman that could do real damage.

I think that there are far too many attacks on credibility and motives across the board on the forums and I thought that it was time (and I'm sorry it was directed at you) that someone made a strong stand in defense of one of the clearly good gals in this mess. We all need to be careful in what we imply about the motives of others or our credibility is at risk when we seek much needed and justified change.
 

Kati

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Teejkay, I don't expect you to be perfect. I have no illusions that I don't often make mistakes. I know Dr. Bateman (I met with her just last week) and your legitimate concerns about the Fibro & Fatigue Centers lead to a portrayal of Dr. Bateman that could do real damage.

I think that there are far too many attacks on credibility and motives across the board on the forums and I thought that it was time (and I'm sorry it was directed at you) that someone made a strong stand in defense of one of the clearly good gals in this mess. We all need to be careful in what we imply about the motives of others or our credibility is at risk when we seek much needed and justified change.

What Shane said. We need to stand by people that want to help us (and wan to help us the right way). Love you Teej :hug:
 

starryeyes

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Teejkay, I don't expect you to be perfect. I have no illusions that I don't often make mistakes. I know Dr. Bateman (I met with her just last week) and your legitimate concerns about the Fibro & Fatigue Centers lead to a portrayal of Dr. Bateman that could do real damage.

I think that there are far too many attacks on credibility and motives across the board on the forums and I thought that it was time (and I'm sorry it was directed at you) that someone made a strong stand in defense of one of the clearly good gals in this mess. We all need to be careful in what we imply about the motives of others or our credibility is at risk when we seek much needed and justified change.
Okay Shane, :Sign Peace:

I understand where you're coming from. I say do clear up any misconceptions here! It's really important that we all understand what's going on. I sure do wish doctors and researchers would just make it easy on us by using the same terminology to mean the same things, ie. ME not "Fatigue".

I completely agree Kati :hug: Love you too. :Retro smile:
 

Roy S

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Originally posted by Roy S
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.
Yes, I understood that. How much does the Biobank cost the CAA?
 

CBS

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Okay Shane, :Sign Peace:

I understand where you're coming from. I say do clear up any misconceptions here! It's really important that we all understand what's going on. I sure do wish doctors and researchers would just make it easy on us by using the same terminology to mean the same things, ie. ME not "Fatigue".

I completely agree Kati :hug: Love you too. :Retro smile:
Teej (can I call you Teej?),

I'm sorry about any hurt feelings.

Thanks for your reply and right back at you! :Sign Peace:
 

Cort

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Really Ill Patients - I assume that anyone who can see a doctor can participate in this program. Many very, very ill people see doctors. Mike Dessin was 6'3", weighed 114 lbs, couldn't stand up or tolerate noise or light and he found a way to see his last doctor. Yes there are some people who cannot even do that but there are still alot of REALLY, REALLY, REALLY ill people who see doctors. They all have to get blood drawn - just as in the patients in the BioBank do. There are going to be plenty of really, really ill people in that collaboration.

I don't know how much this is costing the CAA. They were smart to find a way to get federal funding for the project. I imagine they are on the hook for test kits, etc.?

I recently got blood drawn for a research study; it was about 20 bucks. I imagine some doctors can simply draw the blood at their office (?)

Faster, Cheaper, Better Research - This is a quick and efficient way to get researchers the samples they need to do their work. It will mean that they can do their work much faster and they can do it much cheaper and they can do it with patients who have been carefully characterized - all those things are problematic right now...it takes a long time to do studies; it takes alot of money...and no one really trusts anyone else's patients.

Check the Blood: Think of this: the Light's are doing the exercise studies right now. They're taking blood before and after people exercise and they just looked at cytokines and found something in the more severely ill patients but not in the less ill patients. Suppose someone comes along in a year or two and says "I know what's going on, its not the cytokines" that are really causing people pain its an different immune factor".

All they have to do is check the blood in the biobank. They don't have to enroll patients in another exercise study, have them get on that expensive bike, etc. -all they have to do is check the blood in the biobank! They don't need a $200,000 grant, They don't a year to get a grant proposal together and another year to get it funded. All they need to do is get permission to check the blood! This is dynamite stuff.

Want to know if XMRV is more active after patients exercise - check the blood!
Want to know if HHV6 is more active? - check the blood!

It's helpful for everyone but its perfect for small research efforts without alot of money - like the CAA's and MERUK's and other organization - who need to cut corners wherever they can. These are the groups that are doing the most creative research.

Dr. Peterson: There's no reason for Dr. Peterson necessarily to contribute samples to this - the WPI has their own bio-bank. I imagine he would have to take twice as many samples - and he's already taking a lot. The CAA is simply trying to expand that idea to take in more doctors. If we contribute to this and support it this is going to work for us -big time.
 

rebecca1995

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Wow, I'm really happy that the CAA is starting this biobank!

A concern is that doctors who received the Toolkit for Doctors might be confused about the selection criteria. To submit a sample to the biobank, patients must meet the Fukuda or Canadian Criteria.

But the Toolkit for Doctors (toolkit4.pdf) uses the Reeves Criteria: Next to a photograph of Bill Reeves, it says,

Chronic fatigue syndrome
is not rare. In fact, new CDC
research indicates that more
than 4 million Americans
have CFS.
Only the Reeves Criteria--not Fukuda or Canadian--give such a high estimate (over 4 million). The more selective criteria yield up to 1 million.

So the CAA will have to explain to doctors wanting to send blood samples from their Reeves patients that the information provided in the CAA brochure does not apply, in this case.

An alternative would be for the CAA to take down the Toolkit for Doctors and stop distributing it to healthcare professionals.