Great Opportunity for Phoenix Rising to Represent the ME/CFS Community at CFSAC!

February 4, 2013

Phoenix Rising has the chance to apply for one of 3 non-voting liaison representative positions for ME/CFS organizations on the CFSAC committee – but we only have until Feb 22 to choose our representative and submit our application, so it’s all hands to the pump!

The federal advisory committee for chronic fatigue syndrome meets twice a year in live webcast events

The federal Chronic Fatigue Syndrome Advisory Committee (CFSAC) meets twice a year in live webcast events

 The Chronic Fatigue Syndrome Advisory Committee (CFSAC) provides advice and recommendations to the Secretary of the US Department of Health and Human Services (HHS) on a broad range of issues and topics related to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Issues covered by CFSAC can include factors affecting access and care for persons with ME/CFS; the science and definition of ME/CFS; and public health, clinical, research, and educational issues related to ME/CFS. In recent years, Phoenix Rising and its members have followed CFSAC meetings with great interest through live video feeds, Phoenix Rising articles, forum discussion threads, and our innovative ‘Cover It Live‘ feeds.

Now, Phoenix Rising members have the opportunity to send their own non-voting representative to CFSAC meetings. Nominations are now being sought for three new non-voting ‘liaison representatives’ of ME/CFS organizations on the committee. Priority will be given to “U.S.- chartered 501(c)(3) organizations that operate within the United States and have membership with demonstrated expertise in ME/CFS and related research, clinical services, or advocacy and outreach on issues concerning ME/ CFS” – so we should be in pole position! If Phoenix Rising’s application is successful, our representative will be able to relay concerns, advice, suggestions and recommendations from the Phoenix Rising community directly to the voting members at the CFSAC meetings.

The organizations chosen will occupy the position for the next 2 years and the representative is required to attend at least one CFSAC meeting each year, but our aim will of course be for our representative to attend all 4 CFSAC meetings in the next 2 years. Phoenix Rising will fund the expenses for the representative to attend the CFSAC meetings in Washington, DC (which occur twice a year, during the designated term of appointment) and may be able to pay for their services depending on the costs. We will use part of the Chase grant to accomplish this.

Full details of the Solicitation of Nominations for Organizations To Serve as Non-Voting Liaison Representatives to the Chronic Fatigue Syndrome Advisory Committee (CFSAC) start halfway down the third column in this PDF file.

How are we proposing to identify and choose nominations for this position?

The Phoenix Rising board want our representative at CFSAC to be chosen by our members and to represent the views, concerns and expertise of the whole of our community, using our forums and other communications solutions to provide all of our members with a voice on the committee. 

CFIDS_Association_Open_Science We also aim to form a team of advocates to work together with the CFSAC representative, formulating ideas and organizing discussion about areas of concern for the community prior to the actual meetings. During the meetings, this Advocacy Team would have two-way communication with the Phoenix Rising CFSAC representative, allowing them to relay ideas, questions, advice and recommendations from members directly to the representative. Phoenix Rising has the means to enable the Advocacy Team to organize its ideas, advice and recommendations and to poll the community in order to gain a complete understanding of current concerns and issues and what is important to the community.

We are therefore inviting our members, readers, patient experts, caregivers and friends to:

  • register their interest in the position of Phoenix Rising’s CFSAC representative; 
  • nominate possible CFSAC representatives from amongst our membership or from the wider ME/CFS community;
  • join the new Advocacy Team which will support our representative in their work;
  • offer to supply letters of recommendation in support of our application. (Our application will also need 1-3 letters of recommendation from individuals who are not part of Phoenix Rising’s leadership).

Please submit all nominations, applications, letters of recommendation and expressions of interest by email to cfsac_noms@phoenixrising.me. For nominations, please indicate whether the nomination is to be part of the Advocacy Team or the CFSAC representative and state any relevant qualifications for the position.

(Please note that the representative must be resident within the continental United States, and because of the non-profit status of Phoenix Rising, no one that is currently involved in a for-profit ME/CFS related enterprise is eligible to be nominated for the Advocacy Team or for the CFSAC Representative position. Also, any person that has potential conflicts of interest (CI) with other organizations or business ventures is ineligible for nomination for the Phoenix Rising Advocacy Team or the CFSAC Representative position).

The board will curate the nominations and applications. If we receive sufficient qualified nominations by Feb 13th, we will close nominations at that point and hold a poll to enable the community to vote on the Phoenix Rising CFSAC Representative. If time does not allow for a community vote, the Phoenix Rising board will select a representative based on the qualifications each person has demonstrated.

This is a great opportunity, but time is short! Our application must reach the HHS by Feb 22, so we need to hear from you as quickly as possible. Now is the time for us to build on the experience and expert knowledge of our community and make a real difference in ME/CFS advocacy!

 

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15 comments

{ 15 comments… read them below or add one }

taniaaust1 February 4, 2013 at 9:29 pm

The Advocacy team who will be "allowing them to relay ideas, questions, advice and recommendations from members directly to the representative. " .. do all those individuals need to be American or residing in America?

I really do hope that even if there is only a couple of nominations.. that PR will allow its members here to vote for them rather then them just be being picked by a few people on the board which to me dont really seem to be right as it should be a community thing.

barbc56 February 4, 2013 at 9:35 pm
taniaaust1

The Advocacy team who will be "allowing them to relay ideas, questions, advice and recommendations from members directly to the representative. " .. do all those individuals need to be American or residing in America?

I really do hope that even if there is only a couple of nominations.. that PR will allow its members here to vote for them rather then them just be being picked by a few people on the board which to me dont really seem to be right as it should be a community thing.

I kind of agree with what you are saying but at the same time would it become a popularity contest among members?

Barb

taniaaust1 February 4, 2013 at 9:52 pm
barbc56

I kind of agree with what you are saying but at the same time would it become a popularity contest among members?

Barb

I guess some will think that but I know I'd vote for whoever I thought is good at getting points across well (someone who can speak out but at the same time doesnt go overboard with things) and could make a good impression on people and who I know understands severe ME rather then who Im friends with.

What's important to most of us?.. scoring a point with a friend or ME/CFS being represented well where it needs to? I think nearly all here would think the second thing and base a decision on that. The whole ME/CFS thing is too important to us… this is our own healths on the line here.

Mark February 4, 2013 at 10:10 pm
taniaaust1

The Advocacy team who will be "allowing them to relay ideas, questions, advice and recommendations from members directly to the representative. " .. do all those individuals need to be American or residing in America?

No, there's no restriction that you have to be a US citizen in order to have an input. The representative will need to be a US resident, and the Advocacy Team will of course need to have a good understanding of the circumstances in the US, in order to address the US-specific issues that CFSAC discusses. But I see the well-informed input and support that our representative will receive from around the world as one of the best things that Phoenix Rising can bring to the table.

I really do hope that even if there is only a couple of nominations.. that PR will allow its members here to vote for them rather then them just be being picked by a few people on the board which to me dont really seem to be right as it should be a community thing.

I agree, and the board are all agreed that we would very much like our representative to be genuinely representative of our community: we are not here to dictate to the community, we are here to enable it. We don't know what kind of nominations and applications we will get, of course, or how many, but we do want to hold a vote if it's feasible. Apart from anything else, I think that would add to the representative's legitimacy and it would mean they have the backing of our community. We are perhaps going out on a limb a bit by offering this – we don't have to do it and I suspect we will be the only organization that does (we may be the only one that realistically could do it) – but I hope it will work out well. We'll soon see…:)

Mark February 4, 2013 at 10:22 pm
barbc56

I kind of agree with what you are saying but at the same time would it become a popularity contest among members?

Barb

Yes, that's certainly a risk. There's also a risk that some very good candidates may not want to submit themselves to this process, a risk that a vote could be divisive, and especially given the short timescale, there's a risk that the process may be far from ideal in democratic terms. As I say, we're going out on a limb with this, but I believe it's the right thing for us to do.

I just don't know how this will work out. Maybe we won't get anybody prepared to do the job – it's a big ask and perhaps most of us aren't physically up to the job. Maybe the strongest nominations won't be members, but advocates from outside PR who can do a good job of relaying the members' concerns to the committee. In a way, I'm personally hoping that the vote will turn out to be an obvious choice, and a landslide, and maybe in the end the candidates will agree amongst themselves who is in the best position to do the job, who knows? I really hope it's not a divisive process, I see no reason why it has to be and we'll do our very best to manage it in such a way that it isn't like that.

Mark February 4, 2013 at 10:24 pm
taniaaust1

I guess some will think that but I know I'd vote for whoever I thought is good at getting points across well (someone who can speak out but at the same time doesnt go overboard with things) and could make a good impression on people and who I know understands severe ME rather then who Im friends with.

What's important to most of us?.. scoring a point with a friend or ME/CFS being represented well where it needs to? I think nearly all here would think the second thing and base a decision on that. The whole ME/CFS thing is too important to us… this is our own healths on the line here.

Some important factors for the job description there Tania. Another factor to consider is that who we choose may well have an influence on whether we are ultimately one of the 3 organizations chosen to have a representative at all. So it's worth having a careful look at what the HHS notice says they are looking for…

Andrew February 4, 2013 at 10:35 pm

I think people should volunteer to be nominees. Otherwise we could nominate person after person who is not up to doing this.

Mark February 4, 2013 at 10:43 pm
Andrew

I think people should volunteer to be nominees. Otherwise we could nominate person after person who is not up to doing this.

Good point, thanks Andrew. We tried to word the article to include that volunteering aspect as well, rather than just talking about nominations. There's not much point nominating people who can't do it or don't want to do it, and the typical requirement of getting somebody to nominate you if you want to do it isn't too relevant here really. I think the 'nominations' part is perhaps in reality a bit more like 'suggestions' of people we might ask to do it. If you have any ideas of people who might like to do it, who you think would do a good job, then throw the ideas our way…of course if you're able to contact them first, it might be nice to check if they actually want to be nominated…:)

taniaaust1 February 4, 2013 at 11:30 pm
Andrew

I think people should volunteer to be nominees. Otherwise we could nominate person after person who is not up to doing this.

I think those who manage this site will need to check with anyone nominated.. before any actual voting takes place. (I'd assume they'd do that). There is bound to be a heap of nominations who wouldnt like to do it due to their health.

Mark February 5, 2013 at 8:52 am
taniaaust1

I think those who manage this site will need to check with anyone nominated.. before any actual voting takes place. (I'd assume they'd do that). There is bound to be a heap of nominations who wouldnt like to do it due to their health.

Indeed we will. We'll also need to 'curate' some other aspects as well, like checking they are resident in the US, and where (so we can work out the budget implications), making sure they understand what's involved and are able to meet those requirements, and depending who registers an interest there will probably have to be some other conversations as well so we can work out how best to present any potential poll. Some nominees may perhaps decide to step down in favor of better-qualified candidates, and if we do have a poll we'll need some explanation of who the candidates are and perhaps some of the implications of the choice.

We'll just have to see who steps forward. I'm not expecting this to be a particularly 'political' process because I think we're all on the same page here. For me, it's about finding as many potential candidates – and advocacy team members – as we can, and figuring out together who is in the best position to represent the community effectively at CFSAC.

BEG February 5, 2013 at 10:17 am

Who are the advocacy team members at this point besides the board, obviously?

snowathlete February 5, 2013 at 10:47 am

Hi Mark – can anyone potentially be an Advocacy Team member, or do they need to be resident in the US?

What level of commitment would an Advocacy Team member have to make?

Mark

No, there's no restriction that you have to be a US citizen in order to have an input. The representative will need to be a US resident, and the Advocacy Team will of course need to have a good understanding of the circumstances in the US, in order to address the US-specific issues that CFSAC discusses. But I see the well-informed input and support that our representative will receive from around the world as one of the best things that Phoenix Rising can bring to the table.

OK, so Advocacy Team members can come from outside the US, but the Representative who attends CFSAC meeting(s) needs to be resident in the US.

What level of commitment will Advocacy Team members need to make in joining the team? Is it possible to estimate the time someone who need to give to the post and over what period? What kind of tasks will they be required to carry out?
I know these questions may be difficult to answer at this early stage, but as health is going to be a limiting factor for many, if we can get a clearer picture of what kind of commitment would be required, then it may be easier for people to decide if they could get involved, or not?

Thanks

Mark February 5, 2013 at 11:13 am
BEG

Who are the advocacy team members at this point besides the board, obviously?

So far, advocacy work in PR takes place informally within forum threads. There's no formal advocacy team at present. What we want to set up is something new, and anybody interested in advocacy is strongly encouraged to get in touch; the advocacy work will initially focus on CFSAC but it will go beyond that as well.

Mark February 5, 2013 at 11:39 am
snowathlete

OK, so Advocacy Team members can come from outside the US, but the Representative who attends CFSAC meeting(s) needs to be resident in the US.

Correct.

What level of commitment will Advocacy Team members need to make in joining the team? Is it possible to estimate the time someone who need to give to the post and over what period? What kind of tasks will they be required to carry out?
I know these questions may be difficult to answer at this early stage, but as health is going to be a limiting factor for many, if we can get a clearer picture of what kind of commitment would be required, then it may be easier for people to decide if they could get involved, or not?

For Advocacy Team members, there's no such minimum requirement or time estimate. Our health fluctuates, for all of us, and we understand that and work round it for all of our volunteers. That's fundamental for all of our volunteering, we have to be very flexible and understanding of those fluctuations, and not push anybody or expect they can be around permanently, and the same applies here. If we have a team, using private forums and other collaboration software, everyone can share the work whenever they're able to do so, and sit it out when they're not up to it. I think all you really need to be confident of is that you will be available some of the time to help out. If there are enough people in the team, there will always be a few people available.

As a very rough idea of the work: monitoring CFSAC meetings and agendas to see what issues are coming up; liaising with the CFSAC secretary; preparing position statements on those issues; discussing and presenting recommendations for issues to raise; presenting forum discussions and polls to consult with members and get their feedback on statements and then approval for those statements; researching and preparing briefing materials and relevant evidence for the representative, in consultation with the representative….and then, during the meeting itself, watching the video feed and being in 2-way communication with the representative and also with forum members on the discussion threads, maybe taking live polls from members, suggesting ideas for the representative to mention at the meeting and relaying what members think about the issue being discussed, and so on…

PR will give the team the tools to do these jobs, some guidelines on the general approach we expect them to take, and some guidance and suggestions on how best to use the tools and organise the team, but it will be up to the team (and the representative) to organise all that and divide up who's going to do what, and when. The team will have a lot of autonomy: PR doesn't have the staff resources at present to get deeply involved in the day-to-day work.

Imagine this as a vision (this is personally the sort of thing I envisage, ideally): CFSAC announces a discussion on some topic at the next meeting; our representative turns up with an agreed Phoenix Rising position statement on the topic, which has been discussed and endorsed by a list of our members and the wider community through an online 'petition' style endorsement. Then our representative has the evidence to say: here's what x patients have to say about this question.

By the way, I'd like to emphasise that the CFSAC committee is generally very receptive and sympathetic to our concerns, and the difficulty they seem to have is finding practical recommendations which can actually be implemented by those they report to. So the aim here is not confrontational with the committee, in terms of getting some particular political statement approved; the aim is to bring expertise and ideas to the committee to help them come up with practical measures they can take which can realistically have an effect in the real world. Those who've been watching CFSAC for a while hopefully understand what I'm getting at…what I'm trying to say is that (in my opinion, anyway) our representative and advocacy team should see their role as helping and supporting CFSAC with strong ideas and expertise, rather than confronting CFSAC with political arguments. Hope that makes sense.

Seasoned CFSAC watchers and advocates here have a good understanding of the problems the committee faces and the kind of things it can and can't do, and what it needs to focus on in order to be effective…I hope some of those people will pop up here and point us all in the right direction in terms of what's really involved here.

Mark February 11, 2013 at 8:38 pm

Clarifications: Nomination Deadline Extended, FAQ Posted by HHS

Recent communications between ME/CFS advocates and Nancy Lee at the HHS have answered several questions regarding the position of CFSAC representatives on the committee and what is expected of representatives, and the answers from the HHS have now been posted on the CFSAC website. Many thanks to those who alerted us to this response from the HHS:

http://www.hhs.gov/advcomcfs/roster/nominations_faq.pdf

It has also been helpfully pointed out to us that we do not need to select our representative in advance of submitting our application (due by Feb 22), which allows much more time for members and others to come forward and register their interest. There is therefore no need for the Feb 13th deadline mentioned in the article, and instead we will be able to focus our attention on putting our application together. We will announce our plans for managing the nomination (and a poll if this proves necessary) in due course, but it seems appropriate in the circumstances to wait and see whether our application to the HHS is successful before selecting a representative.

Meanwhile, we are still seeking letters of recommendation to use in our application, and more members to take part in the Advocacy Team. Many thanks to everyone who has registered their interest so far – but we still want more, so keep those emails coming, to cfsac_noms@phoenixrising.me ! :)

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