Article: CDC CFS Program Changing Its Stripes, NIH Lags Behind in 2012: The Road Ahead Pt. III - the

Article: CDC CFS Program Moving Forward, NIH Lags Behind in 2012: The Road Ahead Pt.

You can view the page at http://forums.phoenixrising.me/content.php?545-CDC-CFS-Program-Changing-Its-Stripes-NIH-Lags-Behind-in-2012-The-Road-Ahead-Pt-III-the-Feds

 

Is the moon blue? Are pigs flying?

This is great news -- it's about time the CDC started doing something positive for PWME. Thanks for the info, Cort.

 

Good stuff.

Pity Dennis Mangan in particular had to leave early. But he seems to have had a significant positive influence in a short time.

 

As long as they are still using the Empirical Definition and the Wichita Cohort, substantial change is impossible to happen.

And for how long have we been promised changes to the CDC website? When some were made, it was usually for the worse.

I wish I could share your optimism, Cort, but all I see is same old, same old in a nicer wrapping...

The CDC needs to drop their definition and remove all harmful info from their website. When that has happened, I'll believe something is changing.

 

Good series on the state of research. Thanks for your hard work, Cort.

 

Good stuff.

Pity Dennis Mangan in particular had to leave early. But he seems to have had a significant positive influence in a short time.

Dennis was really something - I don't know if those kind of guys come around very often....I talked to him at the Ottawa conference - he felt a good foundation had been built and was quite upbeat about the energy in the program - quite upbeat.....

 

As long as they are still using the Empirical Definition and the Wichita Cohort, substantial change is impossible to happen.

And for how long have we been promised changes to the CDC website? When some were made, it was usually for the worse.

I wish I could share your optimism, Cort, but all I see is same old, same old in a nicer wrapping...

The CDC needs to drop their definition and remove all harmful info from their website. When that has happened, I'll believe something is changing.

CDC definitely needs work. Hopefully their work with the ME/CFS physicians will push them to a better definition, for sure. There may be less progress on the research end than the other ends - we''ll have to see about that. They did have a pretty Ottawa conference - researchers presented work on NK cell dyfunction, basal ganglia dysfunction and a really kind of shocking gynecological study...(Jones also had his rather strange interoception paper). Jones has been there fora long time but the CDC has quite a few young and eager researchers. Falkenburg is just bursting with enthusiasm and Boneva (gynecological researcher) really feels she can make a difference in CFS...

I think the CDC team should be having more impact than they are given their resources but they are making progress. I agree that the Empirical definition is a big barrier - even if it worked it doesn't make sense to use it if nobody else is - which means nobody can really tell if the CDC's findings apply to any others. They should have given that definition 3 years or so and told themselves if no one else is using it then we'll go back to the old one so that we can maintain our relevance.

 

I think we will have to see how this pans out. In the past, they were doing us harm. So sometimes no action is better than action. If they keep referencing Oxford Criteria studies for treatment recommendations, and using Empirical for their work, they continue to do harm. I just hope whatever input that comes from CFSAC and patient groups tilts the scale so they end up doing us more good than harm.

 

Great news Cort. Very few have the capacity to look both at scientific findings and recognise the ignorance of those around them.

Stripes indeed changing - but then how not possible in the light of scientific/medical findings - even I would rethink !:In bed:

 

I think we will have to see how this pans out. In the past, they were doing us harm. So sometimes no action is better than action. If they keep referencing Oxford Criteria studies for treatment recommendations, and using Empirical for their work, they continue to do harm. I just hope whatever input that comes from CFSAC and patient groups tilts the scale so they end up doing us more good than harm.

Their work with the ME/CFS physicians and their work with researchers to build the CASA program indicates they're more in contact with other ME/CFS professionals and I imagine their views will rub off over time. I haven't heard anything from them suggesting they're going to abandon the Empirical definition and indeed they may not but if they start to filter patients according to the CCC definition - which I could see them doing - we could have some interesting results. We shall see!

 

Their work with the ME/CFS physicians and their work with researchers to build the CASA program indicates they're more in contact with other ME/CFS professionals and I imagine their views will rub off over time.

Remember back when the CDC got busted for spending CFS money on other illnesses, and Reeves was the champion whistle blower working hand in hand with CAA (a patient group). That was supposed to work out well too. But all that happened is the CDC got more clever at going through the motions and distorting the state of knowledge.

I just don't think we should break out the party hats yet. They could screw us again. And if it happens like it did before, there will be all sorts of signs that things are changing, but they continue to ignore the original cluster to which the CFS name was assigned, and instead, use the fabricated symptom set that suits their internal bias.