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CDC Workgroup: Update via SolveCFS

mango

Senior Member
Messages
905
Solve ME/CFS Initiative newsletter said:
The Centers for Disease Control and Prevention (CDC) has announced that the first in-person meeting of its newly formed Technical Development Workgroup (TDW) for ME/CFS will take place in September 2016.

This meeting follows an hour-long teleconference between several cohorts—including medical professionals, patient advocates, researchers, and patients—with Dr. Beth Unger, chief of the CDC’s Chronic Viral Diseases Branch, overseeing the effort.

Read full article here:
http://solvecfs.org/cdc-workgroup-on-mecfs-update-2/
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
Over the next year and a half, members of the TDW will assess and revise existing CDC educational materials and create new materials, incorporating the recommendations of last year’s Institute of Medicine (IOM) report, “Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness.” The IOM report both recommended changes in diagnostic criteria and called for an improved method of getting updated information out to clinicians and the public.

Very excited about this!
 

duncan

Senior Member
Messages
2,240
A good start requiring little effort - and demonstrating some sorely needed good faith - would be ripping down the current CDC CFS webpage and replacing it with something that reflects the findings of the IOM.

I hope we don't have to wait another year and a half for that.

Maybe Beth Unger will have good news concerning the CDC's CFS webpage in September?
 

Horizon

Senior Member
Messages
239
A good start requiring little effort - and demonstrating some sorely needed good faith - would be ripping down the current CDC CFS webpage and replacing it with something that reflects the findings of the IOM.

I hope we don't have to wait another year and a half for that.

Maybe Beth Unger will have good news concerning the CDC's CFS webpage in September?

Is that what this is? Regarding info on site? Didn't really understand technical
 

Horizon

Senior Member
Messages
239
I doubt it. Just wishful thinking on my part, I fear.

They should have modified the CDC CFS web info long ago, at least to get rid of references to CBT and GET.

I doubt they'll ever get rid of it. I wouldn't be offended if its complementary added on to it like it can be for cancer or any difficult condition but hate seeing it as treatment.
 

Groggy Doggy

Guest
Messages
1,130
Beth Unger is overseeing the effort?

Oh, boy....er, OH! BOY!

I think if she dumped the "ME is a virus" theory, then she might actually understand ME and be more useful to us. The CDC site seems to reflect her current "confusion" about ME, which unfortunately gets propagated out to the rest of society.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
This is a good or bad thing? I have zero clue who Beth Unger is.

probably a bad thing but I guess it could be worst.

When she got her position at CDC when it comes to us, there was so much hope about that she would be better then the last person. She's been there a long time now and NOTHING has changed, still crap at their website on our illness. Some of how she's put things at times hasnt been much liked...she's been a bit all over the place.

Seeing she hasnt got a good grip on this illness by now, I dont think she will never really fully understand it.

I really cant see much of the change we need with her. Things are likely to just stay the same old. She doesnt seem to be much of a doer.. no progress has gone forward. I honestly cant see anyone from the CDC helping properly to move things forward with this illness. If they are heading up things we can expect GET and CBT still to be being put as ME treatments for probably the next 10 years. The CDC has always worked hard to play down our illness.

dont expect much to come out of these meetings with CDC.
 
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mango

Senior Member
Messages
905
This is a good or bad thing? I have zero clue who Beth Unger is.

Here's one of her infamous quotes, from a CFSAC meeting in 2010:
Beth Unger said:
It is not codespeak if we talk about a psychosomatic illness, it is a reflection of the mind body connection. I think that this is one of the things our society does not do good job at understanding there is a mind body connection. And when you start understanding how people respond to their illness and how their illness affects them, it is a circle.
www.youtube.com/watch?v=pJslacrabWE
 

Groggy Doggy

Guest
Messages
1,130
Here's one of her infamous quotes, from a CFSAC meeting in 2010:

www.youtube.com/watch?v=pJslacrabWE

Do you still think she feels this way? In the video she is essentially politely saying that the one million people with ME (diagnosed or yet to be diagnosed) are hypochondriacs.

Is this the best person that our government can hire and retain to represent ME? In private industry you have to solve problems, not deny them, else you get fired.
 
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Groggy Doggy

Guest
Messages
1,130
I really cant see much of the change we need with her. Things are likely to just stay the same old. She doesnt seem to be much of a doer.. no progress has gone forward. I honestly cant see anyone from the CDC helping properly to move things forward with this illness. If they are heading up things we can expect GET and CBT still to be being put as ME treatments for probably the next 10 years. The CDC has always worked hard to play down our illness.

dont expect much to come out of these meetings with CDC.

jokingly....can we hire hackers to "fix" the web pages?
 

mango

Senior Member
Messages
905
Do you still think she feels this way? In the video she is essentially politely saying that the one million people with ME (diagnosed or yet to be diagnosed) are hypochondriacs.

The last time I heard her talk was during the CDC Grand Rounds in February. And no, sadly my impression would be that the way she feels and thinks about it hasn't changed. I would love to be wrong about that, of course!

Also, I belive she was a co-author of the Reeves criteria? And she's been involved in several CFS studies over the years that have a very strong BPS smell to them... Here are a few examples:
I personally don't like that she still seems to be very willing to promote CBT and GET, and I don't like that she seems to not "get" what PEM truly is (for example, saying that they haven't yet been able to define what PEM is, and refusing to include the 2-day CPET test in the multi-center study etc).

ETA: Here's the thread on the Grand Rounds, including transcript:
http://forums.phoenixrising.me/inde...ut-nih-study-during-cdc’s-grand-rounds.43026/
 

Groggy Doggy

Guest
Messages
1,130
I personally don't like that she still seems to be very willing to promote CBT and GET, and I don't like that she seems to not "get" what PEM truly is (for example, saying that they haven't yet been able to define what PEM is, and refusing to include the 2-day CPET test in the multi-center study etc).

I guess she does what her boss tells her to do, since that is how government jobs usually work. Keeping the 'status quo' is the norm.
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
Do you still think she feels this way? In the video she is essentially politely saying that the one million people with ME (diagnosed or yet to be diagnosed) are hypochondriacs.

Is this the best person that our government can hire and retain to represent ME? In private industry you have to solve problems, not deny them, else you get fired.

I belive she was a co-author of the Reeves criteria?

My impression of Unger is that she has changed her mind over time. If you look at older studies you might be offended, but the closer you get to modern-day research the better she looks. ;)

Recently she gave a presentation demonstrating that ME patients had 'emotional functioning' abilities within the normal range, despite all other functional impairments.

I'm cautiously hopeful.
 

Nielk

Senior Member
Messages
6,970
Yes, the TDW members will be meeting in late September to work on the web site revision. We will give our input. The CDC has the final say on everything. We are prepared and will advocate for the best possible revisions.

Is there a meeting today on this? Is Phoenix rising attending the meeting?