CFSAC - Do only 200 people in the world care about CFS?

I certainly hope not but word on the street is that less than 200 people watched last November's US CFS Advisory Committee Meeting live. This is the number the US government sees - they count views (as well as e-mails, faxes, phones calls, etc.) as evidence of how engaged or interested the community is. In past years, more than 800 people have watched the meetings online but when they switched to audio-only last year, the number dropped by more than 75%.

Now, they're switching back to video because of patient concerns BUT we have to show them we are interested or they will cut back to audio-only and decide people don't care what happens.

[International viewers/ listeners welcomed to watch/ listen as well!]

What can you do?

Register your interest by watching/ listening to all or at least part of CFSAC next week live - next Wednesday and Thursday - June 13-14- 9AM-5PM Eastern Standard Time (Washington DC).

How to watch or listen:

On

June 13-14, 2012

, the meeting will provide a live video stream at

www.hhs.gov/live

and be available by audio (listen only) at

1-888-677-1834

. Passcode: CFSAC 2012

(Punch in passcode when prompted.)

Agenda:

http://www.hhs.gov/advcomcfs/meetings/agendas/cfsac20120613_agenda.html

(P.S. It's OK to watch it later or on Youtube BUT note that Youtube views are likely NOT counted by the government unless the Youtube channel is a government channel. MAKE YOUR VIEWING COUNT.)

Will do Hope. Thank you for posting this.

After decades of big plans and unkept promises of action, I suspect that the answer to your question is that there are far more than 200 people that care about ME/CFS. However, it is more likely, that not many more than 200 people believe the CFSAS will actually make a difference in our lives. Lots of talk, not so much real change. I hope I'm wrong.

My intention is to provoke. It doesn't matter how many people actually care about CFS; those are numbers the government sees to gauge interest. I have a contact who works for DHHS in a non-CFS capacity and my contact tells me they watch these types of numbers and responses closely for different medical conditions and/or issues.

CFSAC members work pretty hard from the people I know but the problem is that CFSAC is not given much in the way of authority since it is an advisory council (based on Congressional mandate). To me, part of what CFSAC has done is prevent some of the damage that has happened in the UK from happening here. For example, if you read the NIH ME/CFS reports and the CDC website (updated just last month), they state that there is no cure to ME/CFS unlike the PACE/ UK NHS guidelines touting GET is a cure. CDC also includes mental activities as causing PEM now compared to only physical. If you look at the NIH grant announcements, other case definitions are now allowed; it used to say only "Fukuda" up to end of last year. So there is change but maybe not at the rate, amount, or ways you or I might like immediately.

People like to complain but how many people actually try to do something? To try to do something requires some understanding of where things stand -- e.g. the details, the players, the recommendations, the obstacles -- and I've received an education from watching some of the meetings. Is it too much to ask patients to educate themselves as they are able about how things work and where things stand? Do you seriously expect others to care more about your illness if they get the impression you don't care about it yourself? How about taking CFSAC recommendations, supporting those you agree with, and writing to your Congressional rep to put some teeth behind CFSAC?

Of course there are other methods we can use to influence the gov't and we should try other ways but to think that by not participating in CFSAC or anything else that things will get better is folly.

I agree with CBS. It's very difficult to watch most of those Federal committee meetings. It's about as productive as watching the grass grow. However, I will fire up the video and leave it running in the background with the audio off. There are a few sections that might have some value to it. What organizations are going to be there? Any specifics on what will be discussed in the org section?

I personally know some of the people on (and who have been on) the CFSAC committee. I'm not saying they don't try or that they don't work hard. I am saying that gauging interest by simply looking at the number of people who tune in can be self-serving and very self-centered. "They (the patients) aren't watching what we (the government) aren't doing to address the issues with this disease, so therefore they clearly don't care and we can be excused for continuing to do nothing."

The number of people tuning into the CFSAC meeting is a very narrow metric. Ironically, this runs directly in the face of the recent study that found 10 times the internet activity amongst CFS patients than was found amongst the next most active group. We care, we've just been taught to expect little from our government as they apparently don't give a damn when it comes to real action.

That said, feel free to PM me and ask what I'm doing to show I care. And yes, I log into the CFSAC meetings, turn the sound off and try not to cry at the thought that once again, nothing will come of this theatrical gesture while patients suffer and sometimes die while waiting for more of nothing to happen.

Yes, I'd be interested in this info too, if anyone has it. Don't recall seeing such a section before but I have only followed CFSAC stuff for a few years and not that closely.

I don't understand why you're asking a group of pwcs to spend their energy on something
that's clearly a waste of time compared to the energy it takes us to keep up with our daily lives.

I can understand a medical professional trying to learn about me/cfs being interested but they're healthy.

If something comes of this,
which is doubtful, we're read about it here on pr. Two days of boredom reduced to a short read. . Tc .. X

If they're watching the number of participants to gauge interest, then anyone who has the ability to log into the meeting should do so. You can mute the sound and go about your business if it's too discouraging or depressing to actually watch. I've volunteered to try and help report on the meeting live which should be interesting considering some of my deficits, but I'll do what I can.

There's a thread starting asking for volunteers here:

http://forums.phoenixrising.me/inde...sing-cfsac-live-commentary.17869/#post-272369

Will do, Hope. Thanks for posting.

I will support those testifying for my behalf as I am unable to go, but I'm able to sign on and watch for awhile. I am also doing this for those we've lost due to this illness, and for those who still suffer.

If the government wants to know how many people care, I will raise my hand.

Also, If you go to the website Mark posted in his thread and go to "Meetings" on the left, it will take you to the Agenda page. It is posted at the top of the list of meetings under Agenda in HTML. It will give you an idea of what, who and when.

http://www.hhs.gov/live/

I will be available during the public comment/testimony times and especially on Thursday, June 14th at 1:15 pm for the ME/CFS Organizations speaking times.

Great thread title, Hope! Certainly got my attention and that's useful to know the govt counts viewing figures as pressure to act.

The meeting will be too much for me to concentrate on so I will log in and leave the feed running.

Same for me. Thanks for posting info., Hope 123.

There a number of reasons the # people watching is low. I'll try not to rehash other's points - too much ...

• 80% are undiagnosed. If you don't know you have it you can't exactly tune in. We need some honest-to-god meaningful physician and patient education so that we can pull in the still functioning into the advocacy world.

• Lots of people are unable to tune in because they're struggling through with work and/or family responsibility, not to mention people who are bed-bound.

• The meetings are very poorly run. It was painful to watch Chris Snell struggle through the meeting that focused on updates to the bylaws and the charter. Wanda Jones had to continually remind him the purpose of each. Cort disagreed when I brought this up before but I believe that each member should read Robert's Rules of Order and the meeting run accordingly. If people don't understand how to crisply and efficiently chair and participate in a meeting a great deal of time gets wasted.

• There is very little time to actually get things accomplished - which doesn't draw a crowd. Look at the agenda - there's lots of obligatory nonsense like listening to Koh's doublespeak or (mostly) meaningless junk from the ex-officio members. I just tune this crap out or sign in late which may prevent me from being "counted". The case definition gets an hour and the ex-officious get 3.
  
• There is world-wide interest in the meeting but realistically it's tough for Europe to tie in for much and the meeting starts at 6am in California - not to mention locales even farther away.

• The video often isn't very reliable. It's very possible that 400 tried to tune in last November but 200 gave up after getting dropped off one or more times. I'm stubborn (a shock to those of you who know me , I'm sure) so I'll just keep trying to log back in.

• I would die of shock if that same list of recommendations were ever actually acted upon. This frustrates the members and patients alike.

Hi Otis (Senor Mumbler! I like it!) - quite a few people seem to be saying similar things about why they're unhappy with the meetings - how they're run, outcomes not followed through and so on. But I don't think any of those things are an argument against tuning in without watching the feed, which is all we need to do to be counted.

I've just started another thread on Dr Grobstein's written testimony to CFSAC, posted by CFS Patient Advocate on his blog. It's great stuff.

Whatever anyone might thing about these meetings, I feel we should support those brave patients and their supporters who go to these things to put our case. I think the least we can do to support them in turn is bear witness through the effortless action of having a video feed running on the computer.

I realise you're not arguing that people shouldn't tune in, you're just saying why you think the numbers are low - but I think it's important to encourage people to tune in, even while we acknowledge it's may well not be a perfect meeting.

I lost a rather long post - lucky for all of you. I have haven't the physical or mental stamina to cover the ground I did in my lost message but I do want mention a few things.

I've personally committed a great deal of time in efforts to get patients to physically attend the CFSACs , so I reserve the right to express my opinion.

I'm also a little but taken aback. I won't support "tuning in without watching the feed" to falsify the number of people viewing this.

That's a bit dishonest. I'd hate to have the government to get wind of patients telling other patients to do that - which could leave us with less credibility not more. They would have every reason to doubt any number of true participants that we might achieve. I think the message needs to be "get engaged" and participate even if you can only listen and only to part of it. Pick and choose what parts you actively watch/listen- fine - but please don't just turn it on just to better the viewing numbers.

I've been a collaborator on a number of actions and for whatever reason the response rate of people who decide to take an action after they see a request for action on a forum, facebook or twitter is about 10% and I've done a fair but of data analysis on this. My best estimate is that there are on the order of 5000 (I'm not as sure about that number as I am the 10%, but it's a good working number) patients engaged in some way with other patients online. So 400 doesn't surprise me as it's very close to the 10% of 5000. The smaller number in November is also not surprising given the lack of video and terrible phone quality and dropped calls. Even I gave up that time. There definitely aren't many more than 400 taking much action on a regular basis, it's almost all the same people every time.

And I disagree that we shouldn't talk about WHY people don't participate. My impression of the original idea here was to be provocative which by definition means stimulating a dialog. Many of the reasons for poor participation really need to make it into testimony presented to the committee either in person or on the phone because it will have the best impact. I'm unable to do either right now - I'm relegated to sending written testimony which gets put into the record but has no real impact. I hope it some of these things will make it into other's live testimony in the future or mine if I'm get well enough to speak on the phone at a moment's notice.

So please, view or listen to at least part of the CFSAC.

Not wanting to take this thread off topic...but I think every testimony can potentially have impact. And more importantly, they are valuable as a way of documenting our disease.

David Tuller specifically said that he studied the testimonies for writing his long article last year:
http://www.virology.ws/2011/11/23/chronic-fatigue-syndrome-and-the-cdc-a-long-tangled-tale/

Hi Otis - sorry your first post got ditched, it's horrible when that happens.

I think we agree on more than we disagree here. I agree it's fine to talk about why people don't want to participate, for instance. And I agree that those who can view or listen, should. I will watch as much as I can.

However, like many of us, it's my ME that will stop me being able to concentrate for long enough to watch very much. I don't want my disability to stop me being counted. Is it dishonest to have the feed running for as long as I would have watched if I was well enough? I can see where you're coming from, but for me, it's like sending a proxy to a meeting that I can't attend in person.

The govt, looking at viewing numbers, can't tell the difference between unhappy patients voting with their feet, and mere indifference if viewing figures are low. But high numbers show support - even if the govt are aware that people aren't necessarily watching everything, someone who has logged onto the feed is someone who is showing an interest.

Thank you for sending written testimony to the meeting - we all owe you a debt of gratitude there.

I think tuning in without watching is meant to be, tuning in to signify interest, even though you cannot watch by that specific means, but to be getting info by some other way. Some people, for instance, just don't have the internet capability, or are sound sensitive. So turning on the webcast is meant to say interested in meeting and what the gov't does whether or not can view by that means. Because the gov't isn't going to count who views at Cover it Live!

So if you need alternate way to get info, get it alternate way, but point your browser to HHS at some point.