Spring CFSAC 2013 Meeting live streaming starting today - Weds 22 May

[Ember]

A new approach certainly seems to be needed. Perhaps boycotting the meeting would send a strong message.

Boycotting the CFSAC meeting would allow patients to demand a separate ME advisory committee, along with a separate ME designation from the CDC.

“Not only is it common sense to extricate ME patients from the assortment of conditions assembled under the CFS umbrella, it is compliant with the WHO classification rule that a disease cannot be classified under more than one rubric.” -- International Consensus Panel

 

[Shell]

On the one hand I see the fact that the CFSAC meetings are filmed and put up on Youtube is good in that the genuine side of ME and perhaps even CFS gets aired, even if we get the sense those realities are ignored.
On the other hand it's not so much that CFSAC is moving at a snails pace - it just isn't moving at all- and frankly, when it does it seems to slide off away from what we desperately need.
I can't even tell what the CFSAC board are hoping to achieve. Surely the meeting should have an agenda from previous meetings to say what has stalled the process. I know we'll NEVER be told WHO has stalled it, but from excuses we could glean something.
Perhaps a loud boycott - even a group boycotting outside the building and inviting the media (who may or may not bother to turn up).
We are very lucky to have some excellent speakers on our side who speak up regularly (repeating themselves at each meeting because nothing has happened from last time).

I am particularly concerned that no explanation or even a promise of the explanation of the allegations made at the last meeting has been forthcoming.

 

[Nielk]

On the one hand I see the fact that the CFSAC meetings are filmed and put up on Youtube is good in that the genuine side of ME and perhaps even CFS gets aired, even if we get the sense those realities are ignored.
On the other hand it's not so much that CFSAC is moving at a snails pace - it just isn't moving at all- and frankly, when it does it seems to slide off away from what we desperately need.
I can't even tell what the CFSAC board are hoping to achieve. Surely the meeting should have an agenda from previous meetings to say what has stalled the process. I know we'll NEVER be told WHO has stalled it, but from excuses we could glean something.
Perhaps a loud boycott - even a group boycotting outside the building and inviting the media (who may or may not bother to turn up).
We are very lucky to have some excellent speakers on our side who speak up regularly (repeating themselves at each meeting because nothing has happened from last time).

I am particularly concerned that no explanation or even a promise of the explanation of the allegations made at the last meeting has been forthcoming.

I share your concern, Shell.

I think that part (most) of the problem lies with the way HHS sets up and charters CFSAC. They compose the charter and set up the agendas. They appoint the members to the committee so in effect they are running/orchestrating the show.
In addition, the only power that the committee has all together is to create recommendations to the secretary of HHS. What happens at that point is anyone's guess? We have gotten very little, if any, completions of the recommendations and now the committee is being asked to bring support for these recommendations because the secretary just has too many advisory committee recommendations to look at and priority will be given to those that have background support for them. This is why they are forming sub-committees to work on this.
The committee members seem like they want to bring about change. I was impressed how they all wanted to be part of the workgroups. The problem is in my opinion is with the government agencies - NIH & CDC.

A strong demonstration might be our only option to wake them up.



The boycott might be a good idea.

 

[Andrew]

When I give telephone testimony at the CFSAC meeting I have zero expectation that my words will have a direct impact on anything the DHHS does. The only reason I do it is in case something I say can be used by someone else who does have influence to help our cause. I also do it because it's the only publicly available national venue were we can hear each other speak, and I think this helps unite us.

 

[Ember]

The boycott might be a good idea.

Committee members have claimed that they're being threatened with eviction for expressing their views. If members representing issues related to ME are being shut out and shut down, isn't it time that the Committee be divided?

 

[Nielk]

Committee members have claimed that they're being threatened with eviction for expressing their views. If members representing issues related to ME are being shut out and shut down, isn't it time that the Committee be divided?

At this point, we don't officially know yet what exactly happened. There are real allegations but no response yet. I'm not sure why or what is being done about it. It does not look promising as to quick and fair action.