Article: NIH Steering Committee Wants Your Input!

Article: NIH Steering Committee Member Mary Schweitzer Asks for Community Input

You can view the page at http://forums.aboutmecfs.org/content.php?317-NIH-Steering-Committee-Member-Mary-Schweitzer-Asks-for-Community-Input

 

Cort, do you know when the "gathering suggestions" will stop?

Because if it hasn't stopped yet, I have another wish list item besides biomarkers biomarkers biomarkers - which remains a #1 priority in my mind - how about some decent mortality statistics applied to the long-term ill?

I mean, bless Dr. Jason for trying, but pulling some names off an Internet memorial list doesn't make for very robust science. If we had solid information on what our mortality stats really are - how much earlier are we dying than the average person, and what are we dying of? - it could lead to better long-term care (i.e., what to watch out for - perhaps we should be aggressively screened for the cancers we tend to get) and also go further toward 'validating' the disease and lending a sense of urgency to all ongoing research, if the early-death stats are dramatic - which I'm guessing they would be. But it has to be from good studies using good disease criteria.

I think that this is a very complicated subject to evaluate.
Most people with CFS die from some kind of contributing factor or complication.
They will not attribute it directly to CFS but to the contributing factor.
The fact that the patient also has CFS , I don't think would be a concern to scientist.
They will say it's just a coincidence.

 

Research to determine the connection between ME/CFS/Lyme and arthritis.
We also need to know why UK government has secret papers on ME that cannot be read for 70yrs. Why are the US and UK government suppressing information on the causes of ME/CFS, Lyme etc?

 

From Hanna Kristi

Request 1. Request the use of the DNA Microarrays as a standard practice in research,
patient evaluation (testing), and ultimately for treatment. There appears to be a wide array of virues or pathegons that can be involved, so getting treatment right means being exact.

Request 2. Create the ability to combine research efforts.The worlds CFS experts should prioritize the research (based on what is known today) in the order that they think this condition evolves, starting with genetics/biomarkers. Divide research then according to the researchers expertise. Hire those where missing. Create a global or a single group manageing financial donations. Have one global source for reporting findings.

Request 3. Change the name of CFS to reflect the reality of the condition. When people hear the word Lupus, they understand that it is a progessive disabling condition. It will help doctors and the general public to understand, reduce stigma and boost ability to raise funds for research.

 

Request 1. Request the use of the DNA Microarrays as a standard practice in research,
patient evaluation (testing), and ultimately for treatment. There appears to be a wide array of virues or pathogens that can be involved, so getting treatment right means being exact.

Request 2. Create the ability to combine research efforts.The worlds CFS experts should prioritize the research (based on what is known today) in the order that they agree this condition evolves, probably starting with genetics/biomarkers (myabe invitro disturbance). Divide research according to the researchers expertise. Hire those where expertise is missing. Create a global or a single group manageing financial donations. Have one global source for reporting findings.

Request 3. Change the name of CFS to reflect the reality of the condition. When people hear the word Lupus, they understand that it is a progessive disabling condition. It will help doctors and the general public to understand, and reduce stigma. This in turn may help to boost the ability to raise funds for research.

 

From AttheBridge:

1. Present: MITOCHONDRIAL DYSFUNCTION-research on the subject reveals correlating symptomology, perhaps indicating cause/trigger/treatment? Well worth looking into.

2. Have PAUL CHENEY, M.D., PhD join in…….he is on to something very helpful. After ALCAT testing revealed sensitivities and ION testing revealed depletions in my body, he set me on a path to improved functionality. Avoiding known triggers reduces the frequency of reactionary flairs, reducing the severity of symptoms. Replenishing identified deficits provides the body with a fighting chance.

3. One thing I would like to see is: TO HAVE RESEARCHERS OPEN THEMSELVES UP AND LISTEN TO THOSE OF US WHO DAILY, “WALK THE WALK”!

C

 

Ooooh, Cort,

Can I ask what ion's were depleted?

Glynis

 

1. If there was only one topic covered, what would you want it to be (besides XMRV)?
Establishing a set of biomarkers that Doctors can order to help them confirm that the patient they are hanging the ME/CFS label on (grin) really has ME/CFS. I would suggest at least three categories of biomarkers, Neurological; with testing for neuro peptide y and maybe MRI scans for lactate, Immunological; with tests for NK cell function, and any recommended by Dr. Cheney and Dr. Peterson, particularly a viral panel to test for other pathogens! And finally Cardiology; testing for POTS, IO, and any additional cardiology problems.

2. We need experts on various aspects of The Disease. Dennis Mangan at NIH, who is running this show, has done a good job, but we could use some more. All suggestions welcomed.
A good Cardiologist. (anyone who is willing!)

3. If only one thing came out of this conference, what would you want it to be?
Oh Please, please, please just get us a really good website that informs and educates doctors, gives them the CCC checklist to work from and set of test to run that will help patients be taken seriously, doctors feel like they have a handle on a definable disease and we can all move forward from there!

And Good luck Mary!