Watch CFSAC meeting online Monday 9-4 EST May 10

[garcia]

It was actually "Rihanna" according to the closed captioning.

I did not like her attitude of how dare Dr. Bell accuse NIH of not doing everything for "CFS".

You can hear Dr Hannah's comments here

http://www.youtube.com/watch?v=LNL7YsAc1hE#t=4m40s

Her remarks are very incoherent, she gets emotional and defensive, offers no evidence for her position and is ultimately defeated by the committee.

 

[justinreilly]

First of all, while Unger was there, the other CDC guy is there all the time. Why isn't other members putting him on the spot as to funding amount, criteria, definition used in studies and lack of education program for clinicians? Can he explain why CDC isn't giving more of their pie piece to CFS?

I'm sure this has been done in the past and I wonder what his response has been. I do agree that this question must be posed to him at every meeting.

And, I have seen government people occupied with shiny new buildings before... Never, even in one year, should a new building prevent you from serving the people.

These meetings are much more delicately handled than the Congressional hearings, like the one with Toyota guy testifying. These CFSAC members are appointed and can only ask and say "please." But Congressmen can demand and can do something. We need some hard questions asked. I get the feeling, from my experience with local politics, that sometimes Committee members want to have such challenging questions and hard points brought out, but they need to keep open communication, so best public does that. And so next time, public will be able to ask ex-officios questions. I still don't see how this will work. If the ex-officio does the political side-step dance around the answer, answer non-answer we call it in the news business, as we saw Holmberg do, will public person be able to do follow up to pin the person down?

Yes.

Recommendations could easily be organized in priority list with stars next to items that cost less than $10,000 to implement. That way, the assistant secretary can easily see both, priority of need, and what cheap things he can do to make biggest impact.

This is very important imo.

Ok, the NIH lady. She is in government mode of don't do anything until the evidence is in. But, by then, many more will be infected. Remember 4% healthy carry this. Although banning CFS patients doesn't help that figure, it does push XMRV into the public consciousness. I understand that there is no point to putting it into public consciousness if there isn't even a reliable test for it. It is a catch-22. But, seems to me, someone needs to move on this. This thinking she has is why HIV contaminated the blood supply for many years. How soon we forget. It took time to know for sure, get all the science in, to know HIV causes AIDS and is transmitted by blood. How many people were infected through blood supply in the time they waited for all the evidence to come in. I know it often doesn't happen in government, but proactive can prevent problems down the road. Common sense is what needed here, not standard procedure. Can we say France? In France, former health minister was convicted of two cases of neglect involving HIV contaminated blood because he should have known they could be infected. (Notice, he did not have to know they were, just should have known they could be.)

Precisely.

And the recommendation of CFS education into Health Reform, great idea. But the wording of that is awkward. Something about ensuring the challenges of CFS education.... something like that.

How about:
Since CFS is an underserved patient group, with at least 1 million ill and 85% still undiagnosed, CFS education should be given high priority in all clinician and public education programs under Health Reform.

Tina

Good clear wording.

 

[justinreilly]

In Cort's interview with patient advocate Rebecca Artman, she said she felt Hanna was very good to us. I'm going to try to get in touch with her to see what she means as I certainly didn't get that impression about Hanna from this meeting and our funding levels.

Dr. Hanna brought up that there had been concern when she was appointed that her lack of experience with ME would be a problem. She said here that she had said at the time that 'if I can do for 'cfs' what i did for the alcohol program at Mass General, which is #7 in the country, it will be great.' problem is i'm not seeing a willingness to do her job much less elevate the program to an elite status of excellence.

According to her she did a great job at the alcohol addiction program at Mass General, but she was alot more suited for that job since she is a psychologist whose work experience is almost entirely in alcohol abuse, not an MD and i'm not sure if she's had any formal training in public health. Walter Gunn was a psychologist and he did good work for us at CDC in the early days, but generally speaking a psychologist specializing in alcohol addiction is an inappropriate choice to head up 'CFS' efforts at NIH.

 

[garcia]

Hanna's defence of herself was extremely unprofessional, especially as no one was attacking her. It's like she made the whole issue about herself, when clearly it was about the safety of the blood supply. On that basis alone (and knowing little else about her) I question whether she is the best person to serve on that committee.

In Cort's interview with patient advocate Rebecca Artman, she said she felt Hanna was very good to us. I'm going to try to get in touch with her to see what she means as I certainly didn't get that impression about Hanna from this meeting and our funding levels.

Dr. Hanna brought up that there had been concern when she was appointed that her lack of experience with ME would be a problem. She said here that she had said at the time that 'if I can do for 'cfs' what i did for the alcohol program at Mass General, which is #7 in the country, it will be great.' problem is i'm not seeing a willingness to do her job much less elevate the program to an elite status of excellence.

According to her she did a great job at the alcohol addiction program at Mass General, but she was alot more suited for that job since she is a psychologist whose work experience is almost entirely in alcohol abuse, not an MD and i'm not sure if she's had any formal training in public health. Walter Gunn was a psychologist and he did good work for us at CDC in the early days, but generally speaking a psychologist specializing in alcohol addiction is an inappropriate choice to head up 'CFS' efforts at NIH.

 

[shiso]

In Cort's interview with patient advocate Rebecca Artman, she said she felt Hanna was very good to us. I'm going to try to get in touch with her to see what she means as I certainly didn't get that impression about Hanna from this meeting and our funding levels.

Dr. Hanna brought up that there had been concern when she was appointed that her lack of experience with ME would be a problem. She said here that she had said at the time that 'if I can do for 'cfs' what i did for the alcohol program at Mass General, which is #7 in the country, it will be great.' problem is i'm not seeing a willingness to do her job much less elevate the program to an elite status of excellence.

According to her she did a great job at the alcohol addiction program at Mass General, but she was alot more suited for that job since she is a psychologist whose work experience is almost entirely in alcohol abuse, not an MD and i'm not sure if she's had any formal training in public health. Walter Gunn was a psychologist and he did good work for us at CDC in the early days, but generally speaking a psychologist specializing in alcohol addiction is an inappropriate choice to head up 'CFS' efforts at NIH.

It would be interesting to learn anything positive about Dr. Hanna with respect to ME/CFS.

I don't know anything about her firsthand but Cort did this blog piece about her (and NIH's poor show in general) last October, which gave me the impression that she has NOT been our ally:

http://blog.aboutmecfs.org/?p=1020

I don't know the up to date facts about where Dr. Hanna fits into the ME/CFS picture at NIH currently, i.e., whether she is still responsible for ME/CFS within NIH. In any event, it would be interesting to find out what, if anything, of help she has been to us.

 

[Roy S]

I have tried, in the past, to make the point to the CFSAC by using the cost of lost productivity (not even counting healthcare costs) to CFS vs. the cost of lost productivity to diabetes. Asking for funding on par with the cost or burden of illness might seem less like take-from-one-illness-to-give-to-another. But in the past, the CFSAC has dodged even that by claiming that Congress makes funding decisions. This is true, but Congress makes those decisions based on WHAT THE AGENCIES REQUEST. And that brings us full circle back to your point that the CFSAC should be focusing on how much money the agencies and department are requesting for CFS research.

Jennie,

Congress also bases their decisions on input from lobbying. That's how groups such as AIDS, breast cancer, etc. are able to do so much good. It's how we got CFS research going in the first place.

You have been on the CAA Board of Directors since 2005 and Chairman of the Board for part of that time.
Kim has been running the CAA for 20 years and I think the NIH research funding in inflation-adjusted dollars is below what it was when Ted Van Zelst and I turned things over to her back then. It's hard to believe how bad things have become. I don't blame the CFSAC. If it wasn't for the WPI we would be in horrible shape.

 

[garcia]

Jennie,

Congress also bases their decisions on input from lobbying. That's how groups such as AIDS, breast cancer, etc. are able to do so much good. It's how we got CFS research going in the first place.

You have been on the CAA Board of Directors since 2005 and Chairman of the Board for part of that time.
Kim has been running the CAA for 20 years and I think the NIH research funding in inflation-adjusted dollars is below what it was when Ted Van Zelst and I turned things over to her back then. It's hard to believe how bad things have become. I don't blame the CFSAC. If it wasn't for the WPI we would be in horrible shape.

Amen to that Roy. That also applies to the UK situation too.

 

[jspotila]

I think we need MORE advocates. Other diseases, like MS, autism, etc, invest MILLIONS of dollars a year in government relations advocacy. CFS needs more dollars invested in the specialized advocacy needed in DC. CFS needs more people to participate in free advocacy efforts like Virtual Lobby Day.

The only US vs. THEM that I see is people affected by CFS (US) vs. people who hold the purse strings for research money (THEM).

 

[Roy S]

Jennie,
Did Kim invite Annette Whittemore to accompany her lobbying on Capitol Hill after the last CFSAC meeting?

 

[Roy S]

bumping this up for Jennie

 

[jspotila]

bumping this up for Jennie

Thanks Roy. My understanding is that Mrs. Whittemore had her own series of appointments when she was in DC for the CFSAC meeting, but Cort had a chance to speak to her personally so he would know better than I. I'm not sure what Ms. McCleary's schedule of meetings was on that trip; they may have been related to the Campaign against Chronic Pain in Women, which launched on Capitol Hill the following week.

 

[jspotila]

So, jspotilla, does this translate to "No"?

I answered the question based on the information that I have.

 

[Martlet]

So, jspotilla, does this translate to "No"?

Moderator note: Would you please reduce your font size? This large font looks like you are shouting. Thanks.

 

[_Kim_]

I was not aware that this forum had rules about font sizes. Can you direct me to the rule(s)?

Yeah, see that's a problem. All this talk about forum rules and the link at the bottom of each page does not even go to them. The bottom of the page is an outdated set of rules. The 'official' rules are in a sticky in Nuts & Bolts. And the rules mention nothing about font size.

I want to know why everyone else can use any size font they want but Wildaisy is singled out by a moderator? Are moderators making up new rules that apply only to certain members? Is this what Cort meant by allowing them to moderate in their own style. Heaven help us.

 

[Martlet]

Why were you using a larger font? This appears to be a new thing for you. FWIW, the post was reported because a member felt that you were shouting at another member and, since you don't normally write in such a large font, I asked you to reduce the size because it appears as if you were shouting. Would it not have been better and just as easy to say "No, I wasn't shouting?"

 

[spindrift]

Why were you using a larger font? This appears to be a new thing for you. FWIW, the post was reported because a member felt that you were shouting at another member and, since you don't normally write in such a large font, I asked you to reduce the size because it appears as if you were shouting. Would it not have been better and just as easy to say "No, I wasn't shouting?"

Martlet as far as common Internet etiquette goes, using capital letters is shouting and font size has nothing to do with that.
Also as others have correctly mentioned font size is not regulated by forum rules. For many members a larger font size
is actually easier to read. It is offensive to forum members when moderators just make up forum rules.
Both members and moderators need to apply forum rules to make this work.

If someone has reported the font size to you it would be correct to let them know that font size is in no way an expression
of shouting.

 

[Dolphin]

as far as common Internet etiquette goes, using capital letters is shouting and font size has nothing to do with that.

That might be because in the past (and still on yahoogroups, newsgroups, etc), one only has one font size as it's plain text.

I think an argument can be made that a very large font size looks like shouting or something similar (i.e. is quite like using capitals).

 

[spindrift]

That might be because in the past (and still on yahoogroups, newsgroups, etc), one only has one font size as it's plain text.

I think an argument can be made that a very large font size looks like shouting or something similar (i.e. is quite like using capitals).

The problem I see here is that people often use larger font size to draw attention to something in the sense of highlighting it and
if we just interpret larger font size as shouting we will be doing a lot of people wrong.

In my personal interpretation Wilddaisy was trying to draw attention to her question not shouting.

Either way I do not think font size regulation is something required to make a forum work.

 

[Dolphin]

The problem I see here is that people often use larger font size to draw attention to something in the sense of highlighting it and
if we just interpret larger font size as shouting we will be doing a lot of people wrong.

In my personal interpretation Wilddaisy was trying to draw attention to her question not shouting.

Either way I do not think font size regulation is something required to make a forum work.

Well personally, I can only cope with so much stress because of my M.E. Arguments can get heated enough in plain text. People can emphasize points in other ways e.g. italics, bold, underlining, *stars*, etc. To me, very large text written in that way looks like capitals.

(By the way, I wasn't the person who complained).

 

[spindrift]

Well personally, I can only cope with so much stress because of my M.E. Arguments can get heated enough in plain text. People can emphasize points in other ways e.g. italics, bold, underlining, *stars*, etc. To me, very large text written in that way looks like capitals.

My intention here is putting together constructive thoughts and I hope that you in no way feel that I am arguing with you.

I see a difference between emphasizing something e.g. * , bold or I and trying to draw attention in the sense of "look here please" as in "waving to be seen from far away" for which I would use a larger font (not that I have ever had something that important to say :tear: ). I think taking away the option of font sizes would take away a visual form of expression that can be used in text.

That being said would you feel more comfortable if members would voluntarily stick to a
maximum font size and what would be a size that would make you still feel comfortable?