Article: Evening up the Odds: the CFIDS Associations BioBank Begins

You can view the page at http://www.forums.aboutmecfs.org/content.php?103-Evening-up-the-Odds-the-CFIDS-Associations-BioBank-Begins

 

just e-mailed the biobank and begged them to let me be a part. thanks cort

 

Great idea Jimbob. I think this is a special project. I don't think you'll be able to get in yet - they're limiting the participation to four doctors - Dr. Klimas, Dr. Lapp and ........:innocent1::innocent1::innocent1: I can't remember. But get in there and support the project.

I just think we REALLY need to maximize our resources. I was just looking at the list of ME/CFS research studies on PubMed---there are hardly any! There's lots of papers but very few research studies trying to figure out the physiology - what's actually happening to CFS! Its been that way for as long as I can remember. Its a damn shame but this project will make our dollars go much further so I'm all for it :victory::victory:

 

I was diagnosed by the late dr. Nelson Gantz in the mid 80s who helped write the clinical definition for cfs! he was just as big back then as these 4 doctors required by the biobank are now! Hopefully they will understand that. Also I can pinpoint my onset almost to the hour! appeared on ABC's Nightline with dr, Gantz and was the subject of a 2 part series televised by ch 7 out of boston!

 

Great idea Jimbob. I think this is a special project. I don't think you'll be able to get in yet - they're limiting the participation to four doctors - Dr. Klimas, Dr. Lapp and ........:innocent1::innocent1::innocent1: I can't remember. But get in there and support the project.

I just think we REALLY need to maximize our resources. I was just looking at the list of ME/CFS research studies on PubMed---there are hardly any! There's lots of papers but very few research studies trying to figure out the physiology - what's actually happening to CFS! Its been that way for as long as I can remember. Its a damn shame but this project will make our dollars go much further so I'm all for it :victory::victory:

Thanks Cort.....As always, great reporting and writing style.
Being a Peterson patient I can't participate at this time....maybe down the road.:Retro smile:

(this thread wouldn't let me post a reply independent of attachment to a quote)

 

Thanks Cloud - at least you're apparently in the first Biobank for CFS ever established - which is, of course, at the WPI - and which we know they made very good use for XMRV.

I hope you can be the first patient to be in two CFS BioBanks at a time

Your cells making a difference for all of us.....:victory::victory:

(Sorry about the wiggy comment box)

 

I know this is a very old thread - Should I have started a new one?

Why does the BioBank use heparin tubes for the DNA blood samples? Will these samples never be looked at for XMRV - because I thought heparin tubes are not the tube of choice for testing for XMRV?

 

I'm not sure, but it is being discussed on this thread if interested. http://forums.aboutmecfs.org/showthread.php?9786-Maldarelli-XMRV-Study-Underway

 

And why did the CFIDS Association of America send out a notice of a study which has no IRB approval?

Generally speaking, researchers are not prohibited from discussing a potential study with participants before IRB approval, but they cannot enroll patients without IRB approval.

I'm seeking more info on questions raised in the other thread - including the status of approvals needed for this study - and will post there when I can.

 

Generally speaking, researchers are not prohibited from discussing a potential study with participants before IRB approval, but they cannot enroll patients without IRB approval.

I'm seeking more info on questions raised in the other thread - including the status of approvals needed for this study - and will post there when I can.

Jenny:

On a personal level i really appreciate that you as a sick person donate so much of your time and energy to the disease....but looking at this from a professional point of view and as a suffering patient.....i just wish you and other caa supporters cld admit that the organization has been very ineffective over the past 20 years. there has not been 1 clinical trial of a drug to treat the disease.

we are saddled with a ridiculous name that does not accurately describe the suffering many of us experience on a daily basis. when sick ppl feel embarrassed to say they have chronic fatigue syndrome because they know they will just be belittled or considered to be not seriously ill....we have a problem.

the other day someone posted on facebook an article from 20 YEARS AGO. when i first started reading it i thought it was a recent article...EVERYTHING was the same...talking abt a potential retro-virus causing the disease, claims of contamination and calls for additional scientific/medical studies of the disease and drug trials.

i know the US govt is a behemoth to fight...and they have not been on our side...but the CAA's job was to budge that monster and they have been unsuccessful.

i worked for a large corp for 15 years. i was in charge of an $8 billion dollar business. I made $160K/year....if my business was not profitable, I would have been fired. CAA has different measures of success (not profit or loss), but they have failed....the leader of the failing organization needs to be fired or resign and someone who can make change happen needs to replace her.

The things that need to happen are:

Drug trials for treatment
Biomedical markers
A New Name for the disease

you can list all the different things the CAA has done over the past 20 years until the cows come home, but the truth is:

the patients have not seen improved care...

nothing, nothing, nothing has changed in 20 years.

If I were the president of the CAA I would be embarrassed by this lackluster scorecard and apologize to the patient base, hang-up my hat and resign....hand the reigns over to a change maker.

Have some respect and compassion for the sufferers of this disease.....CAA CEO: stop taking $178K/year for producing no tangible results...it's really a crime!!!!

 

Jenny:

On a personal level i really appreciate that you as a sick person donate so much of your time and energy to the disease....but looking at this from a professional point of view and as a suffering patient.....i just wish you and other caa supporters cld admit that the organization has been very ineffective over the past 20 years. there has not been 1 clinical trial of a drug to treat the disease.

we are saddled with a ridiculous name that does not accurately describe the suffering many of us experience on a daily basis. when sick ppl feel embarrassed to say they have chronic fatigue syndrome because they know they will just be belittled or considered to be not seriously ill....we have a problem.

the other day someone posted on facebook an article from 20 YEARS AGO. when i first started reading it i thought it was a recent article...EVERYTHING was the same...talking abt a potential retro-virus causing the disease, claims of contamination and calls for additional scientific/medical studies of the disease and drug trials.

i know the US govt is a behemoth to fight...and they have not been on our side...but the CAA's job was to budge that monster and they have been unsuccessful.

i worked for a large corp for 15 years. i was in charge of an $8 billion dollar business. I made $160K/year....if my business was not profitable, I would have been fired. CAA has different measures of success (not profit or loss), but they have failed....the leader of the failing organization needs to be fired or resign and someone who can make change happen needs to replace her.

The things that need to happen are:

Drug trials for treatment
Biomedical markers
A New Name for the disease

you can list all the different things the CAA has done over the past 20 years until the cows come home, but the truth is:

the patients have not seen improved care...

nothing, nothing, nothing has changed in 20 years.

If I were the president of the CAA I would be embarrassed by this lackluster scorecard and apologize to the patient base, hang-up my hat and resign....hand the reigns over to a change maker.

Have some respect and compassion for the sufferers of this disease.....CAA CEO: stop taking $178K/year for producing no tangible results...it's really a crime!!!!

Just wanted to say this is one of the best posts I have ever read on Phoenix Rising.

I totally agree Sheba. If a person is going to earn a commercial salary (I could only dream of earning $180,000 a year), then they should be judged by commercial standards of performance. By that metric I really believe it's time for Kim McCleary to go.