Now that CFSAC's over, what should we do?

[Andrew]

Been thinking about this more. I see the CFSAC meeting as not quite the same question as to what we can do in general. But here are my thoughts.

With the CFSAC meeting, I'm trying to come up with testimony once a year. And in it I'm going to try to offer a phrase or analogy or something else that committee members might find useful when they speak to others. I also plan to include personal info.

With other things, I don't think we should pin our hope on any government agency. The only progress I've seen is through private foundations or organizations, independent researchers, etc. That doesn't mean we should ignore government agencies. We need to keep some pressure on. But they are not going to be shakers and movers on our behalf. The only thing they will do is trickle out money for research at a much lower level than they give to anyone else.

 

[Ember]

I think it's worthwhile minimizing the damage the govt. does through the CDC and trying to get funding through other sources like foundations and other private efforts.

I think this bears repeating. Ours hasn't been a case of benign neglect.

 

[Mark]

I think that the best thing we can do in the relative short term is something suggested by someone in another thread (sorry, can't find it at the moment ). We, probably through our patient organizations, should draft suggested proposals/recommendations for the committee to vote on in advance and distribute them to as many of the committee members as possible.

This would get the issues most important to us on the table. It would also give the committee members time to think, and maybe even to some advance research. We could do without so much of the yack that results from a bunch of people stumbling around lost in a mire without a map. It might also avoid the kind of issue quashing we saw at this meeting, "Well, I don't know if we, as a government agency, can do that." With luck, they might actually check on that type of thing before the meeting.

I think the committee members, in general, would appreciate that some of the work is done for them by people who actually know something about the illness. Their job would be mostly to vote on the expert recommendations (which actually is the job of a main committee) not hashing out details.

For those knowledgeable about meeting and committee management, this is akin to us, the patients and advocates, informally taking on the role of the expert subcommittee. An expert subcommittee does the research and hashing out of all the subtleties and brings to the main committee the proposal, already properly worded, for them to vote upon. The main committee can discuss it, but it's already clear, concise, and well-researched before they ever get it.

Spot on, my thoughts exactly, and that is the topic of this thread. This has been a good discussion, and a number of practical suggestions have been made, but those suggestions need to be collated and worked on, probably by a working group.

I have been trying to think about how this could best be organised. My experience on the forums is that discussions like this are a good starting point and a way of sharing ideas, but in order to turn those ideas into something concrete, we need something more. I think it might be possible to work together on something practical within a forum thread - somebody could start by listing the points/recommendations so far, and then we add to that list as we go along - but this model hasn't happened so far. I'd like to encourage somebody to go through and list the practical proposals so far on this thread, post that, and then we can add to the list as we go along...I would really like to see us trying to work that way, but I don't know if it will work.

We had a similar situation with the PACE trial thread, where the mass of useful information and ideas was not being organised in any way. My response to that situation was to establish a working group, from members posting on the PACE thread, and in the end that combined with work from others elsewhere and resulted in the ME Analysis report on PACE. I think we need to do something similar here.

Those of us who worked on the CFSAC commentary have been thinking along similar lines. My rough idea at the moment is that we should create a small working group of 5-10 members to work on this issue in periodic consultation with the forum membership. We can provide such a group with group collaboration software (we have a few things behind the scenes which work well), and I suppose the aim would be a list of recommendations to CFSAC on (1) organising the committee meetings, (2) developing the relationship with patient organisations, and (3) proposed recommendations they could vote on next time. Another part of that work would be contacting the committee members on behalf of PR, establishing ongoing relationships through one source (rather than lots of individual emails), discussing how we can help them, and relaying our recommendations to the committee together with supporting documentation.

So any reactions to those ideas would be welcome: Does anybody else have any ideas on how to start organising the suggestions in this thread into something a bit more concrete? Any thoughts on whether it can happen within forum threads or whether a subgroup/working group is necessary? And does anyone want to step forward to lead or join such a working group?

 

[floydguy]

I think that the best thing we can do in the relative short term is something suggested by someone in another thread (sorry, can't find it at the moment ). We, probably through our patient organizations, should draft, in advance, suggested proposals/recommendationsfor the committee to vote on and distribute them to as many of the committee members as possible.

This would get the issues most important to us on the table. It would also give the committee members time to think, and maybe even do some advance research. We could do without so much of the yack that results from a bunch of people stumbling around lost in a mire without a map. It might also avoid the kind of issue quashing we saw at this meeting, "Well, I don't know if we, as a government agency, can do that." With luck, they might actually check on that type of thing before the meeting.

I think the committee members, in general, would appreciate that some of the work is done for them by people who actually know something about the illness. Their job would be mostly to vote on the expert recommendations (which actually is the job of a main committee) not hashing out details.

For those knowledgeable about meeting and committee management, this is akin to us, the patients and advocates, informally taking on the role of the expert subcommittee. An expert subcommittee does the research and hashing out of all the subtleties and brings to the main committee the proposal, already properly worded, for them to vote upon. The main committee can discuss it, but it's already clear, concise, and well-researched before they ever get it.

The positive thing about the current situation is that there might be a possibility that if patient groups can pull themselves together we might be able to be able to drive the agenda rather than react to whatever the committee does on their own. It could be worse there could be a Simon Wessley type character looking to sabotage anything productive. Instead we at least may have committee members who appear to be amenable to a reasonable way forward if it's dropped in their lap.

 

[silicon]

It will be a long and difficult road to travel, but I think we need to get Congress to charter a new CFSAC that reports back to Congress. That way a separate branch of government would have oversight power of the Committee. The HHS Secretary could not constantly ignore CFSAC recommendations without potentially being called on the carpet by Congress.

Folks, I suggest paying close attention to what mezombie posts about Washington stuff. She really knows what she's talking about.

I suspect that Congress would be more likely to take action if they believe there is some sort of grass-roots movement/constituency advocating for the patient community. Otherwise it's more convenient for them to continue ignoring us. Act-Up style advocacy was required in the case of AIDS (despite the large death-count).

 

[medfeb]

This thread has lots of great ideas on how to expedite progress. Issuing recommendations on particular issues (e.g. case definition, toolkit), recommendations on the most important priorities, the need to influence a higher level than CFSAC (including Congress), and especially patient groups coming together to send common messages and a common position. I'd agree with others that we will never make any real progress until we join together. I also think now is the time for us to do just that.

On June 6, a group of 14 ME/CFS organizations and 19 patient advocates sent a 'Joint Request for Action on ME/CFS' to Secretary Sebelius, Dr. Koh, Dr. Lee and the CFSAC. The letter lists our concerns with the lack of progress for 25 years, especially in 4 critical areas - confusion on the definition, lack of funding and money spent on the wrong studies, inadequate medical education and the need to accelerate delivery of treatments. The letter calls on the Department of Health and Human Services to convene a meeting between ME/CFS patient representatives and key representatives from across DHHS to understand the concerns listed in the letter and work with us to begin to formulate a strategic, coordinated and fully-funded plan to address the ME/CFS crisis. We have asked for a response to our request by August 1, 2012.

You can read the Joint Request for Action online at the MassCFIDS site. The letter was read as testimony at the CFSAC and as JSpotila and UsedToBePerkyTina said, a number of the testimonies included common messages from the joint letter - especially the call to formulate a strategic, coordinated and fully funded plan and the call to address the four priorities.

So the question for all of you...

Does this begin to address the ideas and concerns you are raising - especially if we can work together as a community to drive a shared position and message? Where are the opportunities to strengthen what we are saying in this letter? What's missing or could be better articulated? What are the 2-3 most important things to do next? Any other thoughts?

Thank you!
Mary Dimmock

 

[floydguy]

This thread has lots of great ideas on how to expedite progress. Issuing recommendations on particular issues (e.g. case definition, toolkit), recommendations on the most important priorities, the need to influence a higher level than CFSAC (including Congress), and especially patient groups coming together to send common messages and a common position. I'd agree with others that we will never make any real progress until we join together. I also think now is the time for us to do just that.

On June 6, a group of 14 ME/CFS organizations and 19 patient advocates sent a 'Joint Request for Action on ME/CFS' to Secretary Sebelius, Dr. Koh, Dr. Lee and the CFSAC. The letter lists our concerns with the lack of progress for 25 years, especially in 4 critical areas - confusion on the definition, lack of funding and money spent on the wrong studies, inadequate medical education and the need to accelerate delivery of treatments. The letter calls on the Department of Health and Human Services to convene a meeting between ME/CFS patient representatives and key representatives from across DHHS to understand the concerns listed in the letter and work with us to begin to formulate a strategic, coordinated and fully-funded plan to address the ME/CFS crisis. We have asked for a response to our request by August 1, 2012.

You can read the Joint Request for Action online at the MassCFIDS site. The letter was read as testimony at the CFSAC and as JSpotila and UsedToBePerkyTina said, a number of the testimonies included common messages from the joint letter - especially the call to formulate a strategic, coordinated and fully funded plan and the call to address the four priorities.

So the question for all of you...

Does this begin to address the ideas and concerns you are raising - especially if we can work together as a community to drive a shared position and message? Where are the opportunities to strengthen what we are saying in this letter? What's missing or could be better articulated? What are the 2-3 most important things to do next? Any other thoughts?

Thank you!
Mary Dimmock

I think the only other broad category off the top of my head is that this is a serious condition at least as bad as MS. This is not about being tired. CBT is not the solution and GET in many/most cases is harmful.

Ideally a new case definition and name change would change perception/reality but I think it's such an important issue that it deserves to be it's own category.

 

[usedtobeperkytina]

The CAA was successful in getting ME/CFS funding in the Department of Defense disease research funding this last go around. We were told by a government employee at the CFSAC, after the meeting, that this is a good strategic move.

Tina

 

[taniaaust1]

As for members leaving before meeting is over, it is not unusual. Although, it does seem more did this time than in times past. I was there. It felt like it was 6:30 when it was just 4:50. Many of them had to catch flights out that evening. One idea might be to move the discussion part of some of the issues for possible recommendation to other times. For example, could the ideas of pediatric recommendations have been done on the day before? Maybe intersperse thirty minutes of discussion for possible recommendation four times during the two-day meeting so it doesn't all happen at the last hour of the last day, when all are tired and some can't stay.

Its very nice to see an easy solution in writing to the issue, I cant see any reason why those who set up these meetings dont take that idea on to solve the issue. I really hope someone expresses this idea to them.. it makes so much more sense to do this.

 

[taniaaust1]

If most members feel they need to leave before 5:00 to catch a plane/train/bus/hitchhike then the meeting should end at 4:00 or 3:00. Or patient testimony or other items not related to voting, decision making, quorums, discussion etc should be taking place later in the day.

Voting is best done not with just the mind but also with a strong sense of the heart when I comes to our situations. Hence I personally think that needs to be being done after patient testomories etc and not before. Emotion can influence voting at times. I'd hate to see someone voting or putting forward their strong views, who didnt understand just how badly this illness affects many of us.

Someone else here put up a great suggestion that discussion and voting rather then just putting it at the end, it could be broken up over the two days after each major theme of this conference... example any discussions and decisions on pedriatric ME/CFS could be put right after that. etc etc. Why cant some time be allocated for this after each major theme?

There are so many different MAJOR issues in ME/CFS that why throw them all into one discussion period anyway...

 

[usedtobeperkytina]

As for how many patient advocates are on the committee, seems we now have two. This lady:
Jacqueline E. Rose, M.D.
Columbia, MD
Term: 06/13/12 to 06/13/16

said she is there as a patient advocate. So, we have a doctor on the committee who is also a patient. And, by the way, she is a voting member. So that puts two patients that have a vote and some more coming that will not.

 

[usedtobeperkytina]

Its very nice to see an easy solution in writing to the issue, I cant see any reason why those who set up these meetings dont take that idea on to solve the issue. I really hope someone expresses this idea to them.. it makes so much more sense to do this.

Another option is to have the first day last a an hour longer and have the second day end an hour earlier, since many have to catch flights.

 

[usedtobeperkytina]

I think that the best thing we can do in the relative short term is something suggested by someone in another thread (sorry, can't find it at the moment ). We, probably through our patient organizations, should draft, in advance, suggested proposals/recommendationsfor the committee to vote on and distribute them to as many of the committee members as possible.

This would get the issues most important to us on the table. It would also give the committee members time to think, and maybe even do some advance research. We could do without so much of the yack that results from a bunch of people stumbling around lost in a mire without a map. It might also avoid the kind of issue quashing we saw at this meeting, "Well, I don't know if we, as a government agency, can do that." With luck, they might actually check on that type of thing before the meeting.

I think the committee members, in general, would appreciate that some of the work is done for them by people who actually know something about the illness. Their job would be mostly to vote on the expert recommendations (which actually is the job of a main committee) not hashing out details.

For those knowledgeable about meeting and committee management, this is akin to us, the patients and advocates, informally taking on the role of the expert subcommittee. An expert subcommittee does the research and hashing out of all the subtleties and brings to the main committee the proposal, already properly worded, for them to vote upon. The main committee can discuss it, but it's already clear, concise, and well-researched before they ever get it.

This is already being done. There are two subcommittees and an ad hoc committee. The subcommittees meet between meetings over the phone. They have a meeting during the first day during lunch. The problem this time is that so many of the members were not known until just a couple of weeks before the big committee meeting.

Tina

 

[medfeb]

I think that the best thing we can do in the relative short term is something suggested by someone in another thread (sorry, can't find it at the moment ). We, probably through our patient organizations, should draft, in advance, suggested proposals/recommendationsfor the committee to vote on and distribute them to as many of the committee members as possible.

The positive thing about the current situation is that there might be a possibility that if patient groups can pull themselves together we might be able to be able to drive the agenda rather than react to whatever the committee does on their own. It could be worse there could be a Simon Wessley type character looking to sabotage anything productive. Instead we at least may have committee members who appear to be amenable to a reasonable way forward if it's dropped in their lap.

This is a great idea. While we don't know the agenda for a given meeting ahead of time, the community does know what the key issues are and where some opportunities are. For instance, moving forward with the case definition, CFSAC charter, improving medical education through something like the ICFSME primer, lack of DHHS response to CFSAC recommendations, etc.

We may need to work through mechanical issues like how and when we get it distributed. But as a community, we will help expedite the process by developing well thought out analysis and recommendations on what the issue is and what needs to be done to resolve it.

 

[medfeb]

I think the only other broad category off the top of my head is that this is a serious condition at least as bad as MS. This is not about being tired. CBT is not the solution and GET in many/most cases is harmful.

Ideally a new case definition and name change would change perception/reality but I think it's such an important issue that it deserves to be it's own category.

Good point. ME/CFS has had such a negative perception for so long that it will take time and specific action to counteract

 

[taniaaust1]

The problem this time is that so many of the members were not known until just a couple of weeks before the big committee meeting.

Tina

I think whatever went wrong this year to make that happen.. something NEEDS to be changed in that area to make sure it dont happen again. New members should have at least SIX weeks knowledge. The members only being all known just a couple of weeks in advance.. isnt acceptable!!

Who's at fault with that??? (that is a serious question.. I think the community should know who is responsible for getting new members on board etc and I really want to know who was in charge of all that) ..
(the members process to work out who and who wont be members, seems to have been left too late... that's a complete shambles)

Maybe the patient community could put together something to point out the issues with this important meeting and improvements which need to be made.

 

[usedtobeperkytina]

Honestly, I am not sure. I do know that the former members' terms expired in April or March. So even though their last full CFSAC meeting was in November, they still served in the behind the scenes work until their term expired.

I would guess there are multiple steps to vetting new members. And you might have to go through a few before you find ones willing to serve.

Tina

 

[taniaaust1]

I'd like to say im not winging about everything, I was happy with the aspects which were brought up thou at the meeting... many important topics were brought up.. it was like the we were speaking with one voice (I was impressed with parts). (I think the work the subcommitee did may of showed).

I thought it was great the various issues which were brought up at that meeting.. esp the pediatric focus on day 1 (that patient group gets little heard).

 

[BEG]

I have been trying to think about how this could best be organised. My experience on the forums is that discussions like this are a good starting point and a way of sharing ideas, but in order to turn those ideas into something concrete, we need something more. I think it might be possible to work together on something practical within a forum thread - somebody could start by listing the points/recommendations so far, and then we add to that list as we go along - but this model hasn't happened so far. I'd like to encourage somebody to go through and list the practical proposals so far on this thread, post that, and then we can add to the list as we go along...I would really like to see us trying to work that way, but I don't know if it will work.

We had a similar situation with the PACE trial thread, where the mass of useful information and ideas was not being organised in any way. My response to that situation was to establish a working group, from members posting on the PACE thread, and in the end that combined with work from others elsewhere and resulted in the ME Analysis report on PACE. I think we need to do something similar here.

Those of us who worked on the CFSAC commentary have been thinking along similar lines. My rough idea at the moment is that we should create a small working group of 5-10 members to work on this issue in periodic consultation with the forum membership. We can provide such a group with group collaboration software (we have a few things behind the scenes which work well), and I suppose the aim would be a list of recommendations to CFSAC on (1) organising the committee meetings, (2) developing the relationship with patient organisations, and (3) proposed recommendations they could vote on next time. Another part of that work would be contacting the committee members on behalf of PR, establishing ongoing relationships through one source (rather than lots of individual emails), discussing how we can help them, and relaying our recommendations to the committee together with supporting documentation.

So any reactions to those ideas would be welcome: Does anybody else have any ideas on how to start organising the suggestions in this thread into something a bit more concrete? Any thoughts on whether it can happen within forum threads or whether a subgroup/working group is necessary? And does anyone want to step forward to lead or join such a working group?

Mark, many thanks for the suggestions to get PR patient advocates organized to address the committee on those three vital areas. I believe we should take a democratic approach to developing a steering committee (working group of 5 - 10 members). Because there are so many wonderful choices of people on the PR forums, I suggest we open a thread for nominations. Only PR members who are fully committed to this for the long haul should consider accepting a nomination. Next step would be for the registered members to vote for the nominee of their choice. That could be set up like a poll, right? Then the top 5-10 nominees are chosen for the committee. A "private group" (or your behind the scenes software) could be set up for meetings, with someone taking the position of spokesperson/secretary reporting back to the forum at large. From that steering committee, subcommittees could then be appointed, etc., and the work begins.

Mark, that's the way I see your idea working in practicality. I would welcome anyone's suggestions and reactions to Mark's proposals.

 

[SpecialK82]

Yes, thanks Mark for the effort to organize, I would love to see a CFSAC working group become a permenant part of PR. As has been mentioned, if we could do the committee's thinking for them and hand them some solutions, we just may be able to shine a light on a way forward.

Jennie Spotila, I think your testimony was exactly what we need, and am hopeful that you would either consider leading or being part of such a group.