Urgent request for the cfids association of america solvecfs

Tuha

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I just got this email some minutes ago:

Message below came from MiamiCoralGablesCFIDS group:
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THIS IS AN URGENT REQUEST FOR THE CFIDS ASSOCIATION OF AMERICA SOLVECFS BIOBANK!!!!!

The general announcement and explanation of the CFIDS Association of America's SolveCFS BioBank is found at
www.cfids.org/ biobank/announce ment.asp . We have previously posted information to our yahoo site with regard to the SolveCFS BioBank and, while some of us have responded and already completed our forms and sent back our blood work and cheek swabs, I'm sure that many of you have put it on your "to do" list to respond to at a "later date." That later date has arrived. It is urgent that you respond and participate in this research right now if possible. Dr. Klimas informs me that the CFIDS Association of America is in crisis and in danger of losing its funding for this important BioBank if we can't come up with 25 volunteers within the next week or so. We can't let this happen because of our lack of participation. All of Dr. Klimas' patients are automatically qualified without any pre-screening unless they have some exclusion listed below which is excerpted directly from the study criteria found at
www.solvecfs. org/SOLVECFSBIOB ANK/CURRENTSTUDY CRITERIA/ tabid/117/ Default.aspx :

General Exclusion Criteria for CFS Subjects
A subject will not be eligible for inclusion in current studies if they do not meet the Fukuda criteria or
the Canadian criteria (see references below) or if the following general exclusion criteria apply:
1. Alcohol or substance abuse within two years before onset of chronic fatiguing illness defined as an
average weekly intake of more than 14 drinks for males or more than 7 drinks for females. One
drink is equivalent to 12 g of alcohol: 12 ounces (360 ml) of beer, 5 ounces (150 ml) of wine or 1.5
ounces (45 ml) of 80 proof distilled spirits.
2. Where participation in the study would result in donation of blood or blood products in excess of
500 mL within a 56-day period.
3. Major surgery within six months after operation or minor surgery within three months after
operation.
4. Major infections such as sepsis or pneumonia within three months post-resolution.
5. Myocardial infarction or heart failure within five years after event.
6. Morbid obesity defined as body mass index (BMI) greater than 40.
7. Psychiatric conditions including lifetime diagnosis of bipolar affective disorders, schizophrenia of
any subtype, delusional disorder of any subtype, organic brain disorders, or major depressive
disorder with psychotic or melancholic features, anorexia nervosa, or bulemia within 5 years
before the onset of chronically fatiguing illness.
8. Unwillingness or inability to provide written informed consent.
9. Mental or legal incapacitation.

This will be discussed at our support group meeting tomorrow, but I urge you to please contact Gloria Smith at the CFIDS Association of America today by emailing her at biobank@cfids. org or by calling her directly at 704-362-2343 and asking that you be included as a participant for the SolveCFS BioBank. We all know how important this is for all CFS patients now and in the future. Each of us can make a very valuable contribution to research here. Please don't let this opportunity slip away.

Thank you,
 

frenchtulip

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Thanks for posting!

Thanks for posting this message! I sent my form in last week. Hopefully, there will be a good response very soon.
 

Anika

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With the news that is coming out about XMRV and CFS, I would think there would be strong interest by a lot of researchers in the CFS Biobank, basically, any way they can get their hands on CFS blood!

Now that we can sign up even if we're not patients of selected doctors (were they Lapp, Klimas, Bateman, Peterson? ), I hope a lot of people will enroll. I had read a few weeks ago that they had broadened the scope of who could sign up, but got sidetracked with other things. Time for me to sign up!
 

Tammie

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Oh, I really hope that people sign up.....it would be extremely unfortunate if funding were to be lost due to lack of participation.....I would sign up, but unfortunately I was not recovered from my eating disorders long enough before I got CFS, and that disqualifies me
 

jspotila

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Clarification

The SolveCFS BioBank is not in danger of losing funding, nor is the Association in crisis.

But we DO need the participation of CFS patients and healthy controls.

The BioBank criteria were recently broadened in order to make it possible for more patients to participate. If you were excluded under the original criteria, you may now be eligible to join.

The following is an email sent to individuals who expressed interest in joining the BioBank:

We are deeply appreciative of your interest in the SolveCFS BioBank. Your participation will help build a valuable repository of clinical information and tissue samples to advance CFS research.

This message is being sent to all individuals who were referred by one of the physicians working with us on this study and have been mailed written informed consent to participate in the SolveCFS BioBank. We are working with a partner on the first study and we are eager to enroll you so that your samples and data can be included in the analysis. In order to do so, we must receive your signed written consent form by U.S. postal mail.

Whether you decide to enroll or not, we ask your help with identifying and recruiting controls for this study who are in good health who do not live in your household and are not related to you by blood or marriage. If you have a friend, neighbor, colleague, etc. of your sex and age (within 5 years older or younger), please consider asking them to participate in the BioBank. It's really important for studies to match results against appropriate controls and so far our enrollment is lagging behind that of patients. We anticipated this, but it would be fantastic to have the help of the inaugural BioBank participants!

We also recently announced General Enrollment for the BioBank and we welcome patients with a diagnosis of CFS (from any licensed physician) as well as controls who may be related to you or who live in your household. We will consent them, send questionnaires and contact them for sample collection when they become eligible for a future study.

Thank you again for considering participation in the BioBank! We hope to hear from you soon and to continue the enrollment process as soon as we receive your signed consent form. If you have decided that you cannot or don't wish to participate at this time, it would be helpful to receive that information as well. There is no pressure to participate; informing us of your decision will allow us to remove your name from our "pending" list so that we don't send you further reminders.

If you have questions, please don't hesitate to contact us at biobank@cfids.org or 704-362-2343.
 

Stone

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I tried to participate in the biobank but I couldn't figure out how to do it. It ended up that I had to make a phone call or something. What am I missing? It needs to be a bit more user friendly for cognitively challenged ppl like I am sometimes. Today is one of those day. I refer to super-brain-fog as "the big brown helmet". Today, I have a big brown helmet on, so could someone give me the "Fisher Price" explanation as to how to participate in the biobank, please?
 

Cort

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We also recently announced General Enrollment for the BioBank and we welcome patients with a diagnosis of CFS (from any licensed physician) as well as controls who may be related to you or who live in your household. We will consent them, send questionnaires and contact them for sample collection when they become eligible for a future study.
This is the key thing - anybody can join now! (?)
 

jspotila

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I tried to participate in the biobank but I couldn't figure out how to do it. It ended up that I had to make a phone call or something. What am I missing? It needs to be a bit more user friendly for cognitively challenged ppl like I am sometimes. Today is one of those day. I refer to super-brain-fog as "the big brown helmet". Today, I have a big brown helmet on, so could someone give me the "Fisher Price" explanation as to how to participate in the biobank, please?
Stone, just send an email to biobank AT cfids DOT org saying that you want to participate. The staff will take it from there.

Cort, yes! Anyone who has been diagnosed by a physician with CFS is now eligible to participate! We are really excited about this and want to build the BioBank as quick as we can.

And we need healthy controls!! Your family, friends, neighbors, etc are all eligible to serve as controls, so spread the word! More info at solvecfs.org.
 

*GG*

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I tried to participate in the biobank but I couldn't figure out how to do it. It ended up that I had to make a phone call or something. What am I missing? It needs to be a bit more user friendly for cognitively challenged ppl like I am sometimes. Today is one of those day. I refer to super-brain-fog as "the big brown helmet". Today, I have a big brown helmet on, so could someone give me the "Fisher Price" explanation as to how to participate in the biobank, please?
To learn more, please read information posted on our SolveCFS website ( http://www.solvecfs.org/SOLVECFSBIOBANK/tabid/99/Default.aspx ), view the recording of this week's BioBank webinar ( http://www.youtube.com/solvecfs ), or send your name and contact information to biobank@cfids.org.

Contents from 1 of their emails.
 
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Has the CAA considered family, friends and neighbors in close contact with a CFS person may not be the best option for HEALTH controls?
 

Hope123

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I tried to participate in the biobank but I couldn't figure out how to do it. It ended up that I had to make a phone call or something. What am I missing? It needs to be a bit more user friendly for cognitively challenged ppl like I am sometimes. Today is one of those day. I refer to super-brain-fog as "the big brown helmet". Today, I have a big brown helmet on, so could someone give me the "Fisher Price" explanation as to how to participate in the biobank, please?
Stone makes a very good point. I know that people with CFS who have worse cognitive issues than myself and I had a clumsy time figuring out how to register. It would be helpful for the Home page to have a huge button that people can "click" saying "Register for the Biobank!" or some equivalent (like making the Solve CFS big green box on the right side clickable and saying "Click Here!") rather than having people dig around on the tabs and then reading a wall of text to the bottom where Gloria's contact info is.

[For example this FM/ CFS Canadian group's Home page has the words "Patient Registry" clickable on the left column, which immediately leads to their registry form: http://fm-cfs.ca/home.html]

Also, it would be nice if they could mention that you can't register online currently and could detail the steps clearly. Right now, the impression I got was that I could register online; reading the materials, it talks about a consent form, sending in samples and so forth which are steps down the line. This needs to be made clearer e.g. (I don't know what your process really is):
1. Send in your contact info
2. We will send confirmation e-mail to get your address/ phone number
3. You will get a more info and a consent form
4. If you consent and qualify, we will ask for med record info
5. ..........
6.............

No way to get this information across will be perfect but I'd appreciate it if the CAA tries to cater to the most cognitively challenged of us. If Stone and I are both having probs, you can bet others who aren't (or aren't able) speaking up are having the same issues.
 

Hope123

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Has the CAA considered family, friends and neighbors in close contact with a CFS person may not be the best option for HEALTH controls?
This is a good point.

Both the Defreitas and I believe one of Paul Levine's late 80s/early 90s articles talks about healthy family/ friends/ business partners of people with CFS having virological or immunological changes not as bad as those with CFS but not normal compared to people who have had no known contact with people with CFS. Contact controls can help establish transmission routes or aid genetic studies and more research needs to be done even with contact controls in general but these points should be taken into account.
 

jspotila

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Stone makes a very good point. I know that people with CFS who have worse cognitive issues than myself and I had a clumsy time figuring out how to register. It would be helpful for the Home page to have a huge button that people can "click" saying "Register for the Biobank!" or some equivalent (like making the Solve CFS big green box on the right side clickable and saying "Click Here!") rather than having people dig around on the tabs and then reading a wall of text to the bottom where Gloria's contact info is.

[For example this FM/ CFS Canadian group's Home page has the words "Patient Registry" clickable on the left column, which immediately leads to their registry form: http://fm-cfs.ca/home.html]

Also, it would be nice if they could mention that you can't register online currently and could detail the steps clearly. Right now, the impression I got was that I could register online; reading the materials, it talks about a consent form, sending in samples and so forth which are steps down the line. This needs to be made clearer e.g. (I don't know what your process really is):
1. Send in your contact info
2. We will send confirmation e-mail to get your address/ phone number
3. You will get a more info and a consent form
4. If you consent and qualify, we will ask for med record info
5. ..........
6.............

No way to get this information across will be perfect but I'd appreciate it if the CAA tries to cater to the most cognitively challenged of us. If Stone and I are both having probs, you can bet others who aren't (or aren't able) speaking up are having the same issues.
Thank you, Hope 123, I am passing this on to the staff.
 

jspotila

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Has the CAA considered family, friends and neighbors in close contact with a CFS person may not be the best option for HEALTH controls?
Yes, we have. When the BioBank was launched in March, the requirements of the first study excluded family members or anyone that a patient had lived with. However, not all studies will have this requirement. There is also the possibility of researchers who very much want to look at family members, etc.

The BioBank collects detailed clinical information from each participant, and the info is searchable across the whole database. So if a researcher wants controls related by blood, the BioBank can search and provide those people. If a researcher wants non-contact healthy controls, those can be provided as well.

This raises the very big challenge of encouraging the participation of healthy people who have not had close contact with patients. These folks are harder to recruit since they don't have the same vested interest that the rest of us do. I encourage everyone to reach out to your extended network - perhaps co-workers of a family member or friends of friends. We really need these people to participate because healthy controls will continue to play a big part in CFS research.

Any questions or for more information - biobank@solvecfs.org