Webinar with Dr Unger from the CDC Sept 8

[Kati]

Presented by Solve CFS, Dr Elizabeth Unger will speak live tomorrow

In order to participate, you need to register:
http://solvecfs.org/2016-webinar-series

There is usually the chance to ask questions.

 

[Kati]

This webinar starts in 3minutes! Not too late to register!

 

[Esther12]

Remember to ask awkward PACE questions!

 

[Nielk]

She is talked nag about how her multi site study started. Which happened five years ago and is OLD news!

She spoke about this many many times.

Why is she repeating all this now?

 

[Nielk]

After5 years, they are ready to publish about the study....design!

 

[shannah]

S-L-O-W - understatement!

 

[Nielk]

Question about GET/ CBT -
Reply - the IOM didn't tackle this. Not enough info to change education about - they are in discussions about it.

Very vague answer - didn't really reply.

Unger says CBT is management tool - not treatment. It may help some people.

Wasn't pushed about GET and removing it from website and educating about its dangers.

 

[Nielk]

Question - what type of fatigue in ME/CFS compared to fatigue in other illnesses.

Reply - hard to measure fatigue and even PEM. Function is easier to measure.

 

[Nielk]

Question - what is prevalence of me/CFS
Reply - just questionnaires - self reported.

Is CDC tracking it? Unger - I guess we are. But it's not a reportable condition bc there's no agreements with states. CDC data of burden justifies more work.

Q - what is reportable? Unger - don't know -

 

[Nielk]

Question - ebv and pregnancy?
Reply - ebv is infectious prolonged disease. Post infectious fatigue is the recovering state.

 

[Nielk]

Question - what is CDC doing to provide Georaphic equity?
Reply - we need more expert clinicians. Most of them are on the coast. We need more physicians in other areas.

 

[Nielk]

Question - regarding improved measure should they usestadartizedmeasures and also criteria with PEM?

Reply - each criteria needs to be measured - adding measures of specific functional measures. ( didn't understand)

 

[Groggy Doggy]

I joined a few minutes late. What was the purpose of the webinar? I didn't hear anything new from Unger. Did I miss something?

 

[Kati]

Solve MEcfs will post their recording usually within 24 hours, but here are a few slides from screen shots:

CDC is moving molasses slow unfortunately. At one time there was tension felt between @znahle and Dr Unge rrevealing there were differences of opinion and I would like to thank dr Nahle for telling it like it is.

I am utterly disappointed at how slow the cdc is moving and there is the likelihood that their lack of progress will make them irrelevant in moving forward as Naviaux et al. And other teams are setting the pace much much faster than CDC is.

 

[shannah]

Yes @Kati I feel the same.

Five years from start of study to publishing the first preliminary results??? Could they be any slower??? I found myself angry listening to her detail the pace.

Also, there seems to be a lot of extra language surrounding definition. They seem to be determined not to give credence to any one particular one but I'm guessing that eventually they want come up with their own definition.

Politics - and Unger is good at it!

 

[Kati]

Yes @Kati I feel the same.

Five years from start of study to publishing the first preliminary results??? Could they be any slower??? I found myself angry listening to her detail the pace.

Also, there seems to be a lot of extra language surrounding definition. They seem to be determined not to give credence to any one particular one but I'm guessing that eventually they want come up with their own definition.

Politics - and Unger is good at it!

They are not publishing the results, is what is killing me, they are publishing their methodology. (As per slide, paper is about the study design.)

The preliminary results will be shared at IACFSME conference.

 

[Snowdrop]

When they present their results at the IACFSME conference I hope by that point that if she prevaricates and obfuscates some shoddy research that the attendees will have found the nerve at that point to simply get up and walk out.

I expect she --like so many --expect some sort of professional courtesy in that no one will push too hard and ask the tough Q's. She knows this is absolutely not true of patients and that there are some sharp tacks among this population.

Imagine if crap research was not tolerated (OK now I'm in an alternate reality).

The very toughest Q being how do they justify to themselves the harm they inflict on the lives of sick people and their families by dragging their feet hoping to see how long they can go without really doing much of anything.

Love how trauma manages to make it into the slide. Maybe someone can point out that if trauma has to be there it should be in the context of 'horrific' medical experience.

 

[*GG*]

Yes @Kati I feel the same.

Five years from start of study to publishing the first preliminary results??? Could they be any slower??? I found myself angry listening to her detail the pace.

Also, there seems to be a lot of extra language surrounding definition. They seem to be determined not to give credence to any one particular one but I'm guessing that eventually they want come up with their own definition.

Politics - and Unger is good at it!

Let a pox reign upon their house

GG

 

[Tuha]

I think they should seriously give up and say - sorry patients we are not competent and instead we will give money to Davis, Lipkin and some other researchers. But of course they will not and they will play this game for ages.

Now we have the situation here. CDC, NIH have no results, they are designing and researching something but it takes forever. Then there are researchers like Davis, Lipkin, Hanson,...who have ideas, promising results but they always struggle with money.

It´s not shame to confess that you are not able to solve something but why not to give up then and to give your pot with money to someone who is able to solve it. We live in the strange world.

But I am not wondering I worked for state and there were many incompetent, lazy people who didnt care about anything. There were also competent people but unluckilly their positions weren´t that strong like the position of incompetent ones. It´s everywhere the same.

I am already annoyed even read about these people. After 5 years they have absolutly no results. I would resigne immediately.

 

[geraldt52]

I joined a few minutes late. What was the purpose of the webinar?

To pretend like they're doing something while continuing to do nothing? Isn't that what the CDC does? Strauss and Reeves must be nodding their heads in approval...