Next CFSAC meeting June 16-17, 2014

[leela]

I know I'm extra irritable b/c i'm in a really bad crash, but I am so so sick and tired of what an ever-increasing taxpayer circus-clown act this meeting has become. I cannot fathom how humans can possibly act this way to one another. Bleurgh!

 

[WillowTree]

CMS has huge population data.

Study found raised risked of non-hodgkins disease for ME/CFS patients.

I'm glad they were able to get these findings to show this association. However, whenever this comes up I think about all of us ME/CFS patients that are not being captured by Medicare stats because some doctors won't use the ICD code for "chronic fatigue syndrome" due to its stigma, etc. They put us under other codes. I wonder what the TRUE picture would be if ALL of us were being captured by these statistics.

 

[NK17]

I know I'm extra irritable b/c i'm in a really bad crash, but I am so so sick and tired of what an ever-increasing taxpayer circus-clown act this meeting has become. I cannot fathom how humans can possibly act this way to one another. Bleurgh!

" Homo homini lupus est."
" Man is a wolf to [his fellow] man."
- Plautus 195 BCE

 

[Nielk]

Presentation about NDAR - data repository for Autism http://ndar.nih.gov/ndarpublicweb/aboutNDAR.html

 

[Nielk]

Carol Head of solve CFS/ME voiced her concerns of the P2P process.

 

[Nielk]

Dr. Lee speaking about "post IOM". Taking a model of the Epilepsy community post their IOM report.

 

[Andrew]

Who is Margaret Jacobs, who expressed gratitude that IOM should agree to look into an illness.

 

[GalaxiiGrl]

Who is Margaret Jacobs, who expressed gratitude that IOM should agree to look into an illness.

Indeed. We should be grateful that IOM agreed to accept a million dollars to do this job!

 

[Nielk]

They are getting us ready to accept the IOM report. They want our organizations to work together in anticipation.

 

[Nielk]

Billy Moore : Why do we not have an NIH representative today while we discuss P2P. Very disrespectful from NIH to the community.

 

[Rrrr]

Eileen Holderman gave a very strong emotional testimony outlining the realities of what has been going on at CFSAC in the past few years. She talked about the dismissal and destruction going on. The HHS agenda of redefining CFS as a broad illness. They have acted in bad faith.

Thank you Eileen for all your work and for serving us so well in your years on the CFSAC committee.

Where can we see this/find this testimony????

 

[Nielk]

Where can we see this/find this testimony????

When it comes out on the CFSAC site.

 

[Andrew]

They are trying to get us to fall into line. The message loud and clear is don't expect any consideration from NIH. Our places as patients, advocates, and experts is in the audience -- listening to them and only commenting when called upon. This is nothing more than a token involvement. Look at what happened to the veterans. They gave their input to IOM, and IOM ignored all of it.

 

[Kati]

It sounds to me that there is still a whole lot of paternalistic medical bullying happening out there.
CFSAC is a big joke. :-(

 

[leela]

i've only been paying attention to CFSAC for maybe four years, and even in that short time the bizarre charade has gotten increasingly more overt
and hostile. so strange and frustrating to witness. at least wanda jones had some sense of humanity and propriety.
this new chair just feels like a weird robot to me. i can't watch any more, i get too pissed off. thank you Nielk for having the stomach to watch and report for us. and thanks to all who continue to serve and offer testimony, even if it feels like spitting into the wind.

 

[Nielk]

As can be attested by the lack of people in the audience and less people testifying by phone, the whole community seems to feel the same.

Maybe this is their tactic. Get us all angry and frustrated to the point that we all get burned out. HHS certainly has the upper hand here because they are running this show - in case you had any doubts.

 

[Nielk]

I don't know how many of you watched this till the end but, the last hour was particularly disturbing to me. They seemed to want to galvanise and unite us in respect of preparing to warmly accept the IOM final study result. Some of the CFSAC members want us to make a big media fanfare about it. They feel that this is a unique opportunity to make a name for the disease.

The reason I was so disturbed is that they assume that whatever comes out of the report will automatically be accepted by the community. What if, as many advocates and experts in the field expect, the outcome is a disaster for us? I think that we should definitely organize and prepare for that very possible event. What are our options then?

In addition, what if the P2P and IOM results clash? If these are truly independent studies, that should definitely be a possibility. That is the risk of running these expensive initiatives simultaneously without transparency. The fact that they don't seem to be worried about that possibility makes me think that HHS has a lot more knowledge/input as to the results of these studies.

Why is it that Dr. Lee can state with confidence that she knows that the IOM report will be very positive? Why does she think that they will answer all her questions and more? Is she getting information which she shouldn't? If this was a true independent study, she should know nothing about their progress beyond how many meetings they have had and how much they have expensed out.

If I had any respect/confidence in HHS before, it is all lost now.

 

[Nielk]

In their effort to try to calm us down and prepare us for the big "reveal" - study report, they invited a representative of the American Epilepsy Society who gave an interesting account of their experience with the IOM. They (patient groups) were very active with the IOM throughout the study. They worked together and were very please with the results. For them, it put Epilepsy bck on the map and gave them much needed awareness.

There is a huge difference though between the Epilepsy study and our IOM study. Epilepsy organizations were also sponsors of the study. They wanted this study, which was not to find criteria of the disease. As I heard others stating, it is like comparing apples to oranges.

All this, is to try to get us psychologically on board and ready to receive with "enthusiasm" the verdict.

 

[Valentijn]

In their effort to try to calm us down and prepare us for the big "reveal" - study report, they invited a representative of the American Epilepsy Society who gave an interesting account of their experience with the IOM. They (patient groups) were very active with the IOM throughout the study. They worked together and were very please with the results.

They should have brought in a representative of patients with Gulf War Syndrome. Surely their IOM experience would have been even more relevant, as GWS is so similar to ME/CFS.

 

[Dreambirdie]

Those meetings are a farce. I can't stomach them.

What I'd like to see is an ACT-UP style group crash it and take over the reigns of power. Only experts on ME and those with family members affected by the disease should be allowed on the committee.