Article: CDC Chief Unger Pledges to 'Restore Trust' - Agrees to Meet with ME/CFS Reps

Comments

Marty, sounds like you may have met Marly in person. LOL

We have many strong-willed women working for our community, advocates, researchers, and physicians.

PANDORA was the one that provided the ACT NOW card for CFSAC. So glad to see Mangan take a move in that meeting. And of course, including patients on the NIH SoK meeting was not necessary. But he did that.

Try this link: http://survey.constantcontact.com/survey/a07e3f2r0fagk8q0b3y/start

I hope things are really changing. But, just as the petition was put up before, it can be done again and there are other options.

Over 200 responses to survey. Help spread the word.

Tina
 
Thanks for the link. Add me to the 200. Voted that everything was "very important" except the CCC criteria, which I assigned "medium importance", only out of fear that it will wind up being fuel for those who will be tempted to view the CCC over-simplisticly and exclude those of us who really have this and don't have any sign of post viral onset or weren't part of a cluster outbreak, however wrongly they conclude that.

I wish we could just say:

  1. rely on the trusted diagnostic experts in the field and
  2. stop saying people with major depressive order alone have CFS and are worthy of study, and for that matter
  3. stop diagnosing people who have CFS as depressed/bipolar/hypochondriacs/somataform disorder sufferers, or whatever the psychoanalytical flavor of the month is.
Frankly I think we should come up with a new diagnosis for doctors/government officials/researchers who "diagnose" us that way. They all seem to suffer from "Medical Denial Disorder" or "New Idea Denial Disorder" or "Out of My Comfort Zone Denial Disorder" or "I didn't learn it in Medical School, so you must be imagining it because I'm perfect and I already understand the entire Universe, Disorder", or in other words "G-d Complex Disorder", or LDS - Lazy Doctor Syndrome.

I agree perception is all important, so added this comment:
Research, research, research! But without a serious name reflecting the debility this illness causes there is NO HOPE of getting the respect we need from our families, friends, doctors, research scientists and governments required to do the research and get us the support we so desperately need. I am speaking as a 34 year veteran of this who has been bedridden most of that time who is not a good fit for even the CCC.
I think it is a wonderful accomplishment to get us a seat at the table and I applaud the efforts of all involved! In the end I think all of us have the same goal, which is an end to this infernal, never ending ridiculous suffering and preventing anyone from having to go through what we have gone through ever again.
 
Sorry about the link - I fixed it. One of Dr. Ungers key goals will have to be to somehow get the CDC to start funding the program......in order to that I think she's going to have to come up with some exciting research - which has not been their forte of late. I hope she is forward thinking and brings some new energy to the game... We shall see....
 
If she wants to get funding, you're right that she needs exciting reserach... for that, she first has to scrap the current program and hire scientists. Of the biomedical variety. James Jones cannot do this. She needs people who are very interested in biomedical causation. Cell biologists, virologists, immunologists...
 
We cannot trust Pandora to speak for us so don't get your hopes up. CAA is now a research organization so they are in competition with WPI and Pandora is also in competition with WPI because they want to set up their own NEID centre of excellence so they don't support WPI either.

WPI has a study due with the cytokine profiles so that we will have a diagnostic test and any organization not supporting that is misleading us in my opinion. WPI is the centre of excellence that has changed our world and is committed to getting us a diagnostic test now, not some centre of excellence Pandora hopes to have their name on in the future. That is Pandora's goal, they do not support WPI.

We will never get anywhere until the name M.E. is restored with the CCC to make clear the difference between the disease we have and the CFS psychosomatic condition which the CDC wants to treat with CBT/GET from the UK. Why M.E. - because it is the correct medical term validated by WHO and it keeps the history of the disease intact, while the confusing acronym ME/CFS can be defined by any CFS definition. Why isn't Pandora asking for M.E.? Why arent they asking for M.E. to be studied in NIAID, with funding on the same level that they spend on HIV?

Pandora has no idea what is most important to save us, they have told us what is important to them and asked us to vote on that. They don't speak for us anymore than the CAA does, the nine points are their terms not ours, and this has become a contest between CAA and Pandora. Its not about us, its about them.

The way you fix the name is to get rid of the 75+% of the patients who suffer from MDD and not ME who are drawn in with the CDC definition (that explicitly excludes those of us with documented serious neurological and infectious/immune problems). It's not just ironic, it is a crime that patients like me could not get into a CDC CFS study after nearly 17 years with this disease precisely BECAUSE I've developed too many serious complications. Seriously, How fucked up is that?!! And they wonder why they can't find anything.

We need to stop focusing on fatigue. My neighbor has leukemia and no one tries to pretend that fatigue is her primary issue. Even the term ME/CFS used by the NIH is a weak compromise that, depending on the definition, can actually includes two mutually exclusive conditions.

NO CFS for M.E!

The CDC wants a relationship and my respect? They can start by acknowledging that I exist!

 
Is there a date set yet? Who can participate other than PANDORA plus the signatories? Other orgs? Independent advocates? At least a limited number that we could vote on? Also like to see it webcast.