State of the Knowledge Workshop for ME/CFS at the NIH, April 7-8th, 2011

[Cort]

State of the Knowledge Workshop to occur in April. This is the first Workshop to occur explicitly on CFS (aside from the CAA/NIH hosted Banbury Conferences) since the Neuroimmune Conference 8 years ago! Why it's a Workshop and not a State of the Knowledge Conference is unclear.

 

[George]

Well at least they are renaming the illness. Here in America ME has more gas than CFS!

 

[urbantravels]

I can't find a single thing about this workshop on the actual NIH website. The only references that Googling returns are reports from various ME/CFS websites, Facebook pages and message boards, including this one. That poster, which is reproduced too tiny to actually read, gives the Web address of the Office of Research on Women's Health, http://orwh.od.nih.gov/, which contains no information on the Workshop.

There is a link on the ORWH site on the left-hand side that refers to "Chronic Fatigue Syndrome" (no ME). Click that link, and you get this lovely page:

http://orwh.od.nih.gov/cfs.html

The entire Trans-NIH ME/CFS Research Working Group website is currently under construction. Please check back later. Thank you!

How long has that page been "under construction"? Anyone know?

 

[Cort]

I think its been under construction for at least a month - Dr. Mangan is revamping it - and my guess is that we'll be happy with it.


He just it to me so its just hitting the Presses now. I don't know why its so shrunk on the page - on my computer its 700 pixels wide..

 

[urbantravels]

The CAA also put it up on their Facebook page where it's a tiny bit bigger, but still too small to read. Can't make out all the logos on the bottom, which I presume are co-sponsoring agencies?

 

[Francelle]

At the bottom of the poster (which is too small to read) there seems to be a collection of sponsors??? Can you tell us Cort who they are?

 

[George]

Yes but the picture is so pretty. And that's all that really matters. (grins)

 

[urbantravels]

It appears to be a picture of neurons.

 

[jspotila]

The logos look to me like the institutes at NIH. This is not a State of the Science conference in the technical sense. Those conferences begin with a review of the data by AHRQ, which normally takes about a year. It has been confirmed to at least two people that I am aware of that AHRQ was not asked to do the data review. No AHRQ review = no state of the science conference by those standard procedures.

 

[urbantravels]

I guess "knowledge" is a lower standard to meet than "science," eh?

 

[*GG*]

So would this be worthwhile for people interested in this area? Where exactly is this being held, have not seen that mentioned.

GG

 

[eric_s]

Well at least they are renaming the illness. Here in America ME has more gas than CFS!

Yes, i think the name change is quite a big thing. I have to get used to it too, i'm still always writing CFS If the NIH are writing Myalgic Encephalomyelitis / Chronic Fatigue Syndrome that means something, i think.

 

[Cort]

It's going to be held on the NIH campus in Bethesda Maryland. THere was talk about it coinciding with the CFSAC Meeting.

I asked Dennis some questions about it.

Why a Workshop not a Conference? Our last federally sponsored scientific get together was the NEuroimmune Conference in 2003. It seemed to me to be a step down to have a Workshop instead of a conference???

This IS a conference, but because the panelists will actually have to "work", it is technically a workshop. This will not be a passive listening session... the panelists will be involved in discussion, deliberation and debate about the current state of the science.

>>>The Neuroimmune Conference had an RFA attached to it. Can you provide information on what we assume will be an RFA that is attached to it?

Meetings such as this help to inform NIH funding opporunities and identify gaps in the science. The form of subsequent funding opportunities will depend on the outcomes of the workshop, so I don't know what the results will be at this point.


>>>It was very nice to see the ME/CFS up there...Thanks for doing that..

Thanks. Glad that the designation is seen as being helpful. Yet, I have received comments from some patient advocates who feel "ME/CFS" confuses everyone and is not consistent with current classifications- they would like to stay with "chronic fatigue syndrome".

 

[shannah]

Will this be webcast? If not, how can we request it to be?

 

[Kelly]

The logos look to me like the institutes at NIH. This is not a State of the Science conference in the technical sense. Those conferences begin with a review of the data by AHRQ, which normally takes about a year. It has been confirmed to at least two people that I am aware of that AHRQ was not asked to do the data review. No AHRQ review = no state of the science conference by those standard procedures.

So does this mean they are trying to work quickly and are bypassing the usual standards in order to do so? How will this affect the information given? Any word on who the presenters will be or what will be presented.

And yes, the logos on the bottom represent the various agencies under the NIH umbrella

 

[*GG*]

Yes, i think the name change is quite a big thing. I have to get used to it too, i'm still always writing CFS If the NIH are writing Myalgic Encephalomyelitis / Chronic Fatigue Syndrome that means something, i think.

Perhaps you can add a "signature" like mine as a reminder?

GG

On another not I am trying to add an icon for my pic. Are there tricks to this, for some reason it will not work for me!

 

[Desdinova]

This IS a conference, but because the panelists will actually have to "work", it is technically a workshop. This will not be a passive listening session... the panelists will be involved in discussion, deliberation and debate about the current state of the science.

Any information on whom the panelists will be? Just wondering if it will be mostly NIH and CDC peeps hogging the show. I must confess that it is exciting to see more focus on ME/CFS and XMRV.

I still however find myself very concerned that this might just be a far more elaborate dog and pony show then the one the NIH and CDC put on years ago. Since that one resulted in ME/CFS to be considered by most to be of the mind reflecting in our physical bodies.

 

[*GG*]

Is anyone going to this:?

IACFS/ME RESEARCH AND CLINICAL CONFERENCE IN OTTAWA, CANADA SEPTEMBER 22ND TO 25TH, 2011

GG

PS I was thinking of going, but I would need a passport and to make sure that this is worthwhile attending.

 

[George]

ummm, I don't know and my majic 8 ball could be wrong but I don't think this conference has anything to do with XMRV. I think this is the new rebranding of CFS (workshop). While the XMRV research is going to be ongoing over the next 3 years or so, I think that CFS is going to be repackaged and this workshop is the first step in that process.

M.E. (sorry can't spell it unless I'm looking at it, grins) is a neurological illness and has a good body of biomedical information attached to it going back to at least 1934. There is also a fair body of research of the biomedical kind that has been largely ignored by anybody who count's including personal doctors, government health agency's, insurance companies, you know the people who make our lives miserable on a daily basis. (big grins)

Well, I think the April workshop will be about pulling all the research together and looking to see what will work in the realm of a biomarker test. And if more work needs to be done or if there are a couple of test that can be run right now based on current research. This is the step that will begin to tease apart all us puppies in the wastebasket that has become the CFS diagnosis. The NIH will need a good set of biomarkers even if XMRV is "it" in order to begin working with a well defined set of patients. I think that's what this workshops about.

The neuron's firing in the picture are kind of a clue. (grins)

 

[Cort]

Any information on whom the panelists will be? Just wondering if it will be mostly NIH and CDC peeps hogging the show. I must confess that it is exciting to see more focus on ME/CFS and XMRV.

I still however find myself very concerned that this might just be a far more elaborate dog and pony show then the one the NIH and CDC put on years ago. Since that one resulted in ME/CFS to be considered by most to be of the mind reflecting in our physical bodies.

That is a good question Desdinova maybe THE question because if they do an RFA off it they will use the conference proceedings as a base....