CFSAC meeting Oct 3-4, 2012

[pollycbr125]

problem solved

 

[SpecialK82]

loved Eileen Holderman's question for Susan Maier

 

[jimells]

It's a huge help to get 'blow-by-blow color commentary'. With my dial-up connection, I can't really access any kind of video, live or otherwise.

Do the committee members *really* understand how desparate we are? I know it's pipe dream, but if they spent even 15 minutes browsing through this forum, they would know.

I'll be astounded if the meeting accomplishes anything useful. My impression is that they are working on a plan to develop a plan to do something someday if there is any money left over after feeding the military machine.

 

[Valentijn]

Do the committee members *really* understand how desparate we are? I know it's pipe dream, but if they spent even 15 minutes browsing through this forum, they would know.

I'll be astounded if the meeting accomplishes anything useful. My impression is that they are working on a plan to develop a plan to do something someday if there is any money left over after feeding the military machine.

I think you're right somewhat, but it's looking better than past meetings I've watched. And the bureaucrats seem to be trying harder to look like they're doing something useful ("Look, we're funding jaw and pelvic studies! That counts toward ME/CFS"), and seem to be responding more to criticism, even if it's just a matter of cringing and stuttering a bit.

I think the presidential attention is helping already, and maybe they've got the incentive to make real progress now. There also seems to be more quality committee members, and fewer clueless random people that want something to add to their CV.

 

[Valentijn]

I'm also hearing a lot more "ME/CFS" than in the past, and a lot less "chronic fatigue" ... And most of the "chronic fatigue" came from a real ME researcher

 

[alex3619]

For other comments see: http://forums.phoenixrising.me/index.php?threads/watch-oct-3-4-to-show-the-us-govt-you-care-about-me-cfs.19669/page-2

 

[Hope123]

I think advocates would do well to inform themselves about the government and how it works but on the other hand, I feel like Dr. Maier and Dr. Lee place TOO much responsibility on patients and their families. After all, aren't they suppose to be the experts in terms of knowing which programs would help us?

My read of watching CFSAC over the years is that while there are some members who understand the urgency of our situation, many still don't get it.

 

[urbantravels]

Um, why are we getting a long lecture on the history of the FDA? Interesting and all (well, not to me, but I already have a good working knowledge of the history of medicine) but it's taking a lot of committee time.

 

[Nielk]

I think that this is the cost we have to pay for the statement from the FDA that ME/CFS is a serious, possibly life threatening illness.

 

[urbantravels]

Oh, hi, now we're getting an explanation about how we need biomarkers and objective measures of disease severity in order to evaluate potential treatments. News flash!

I don't want to slag on the speaker, I think she is genuinely working hard to be informative, but these are NOT issues that never occurred to the ME/CFS community. In fact I often think we talk of little else!

 

[SpecialK82]

Urban - totally agree that we get too much general/historical type information in these agency updates, instead of specifically focusing the entire talk on CFS/ME

 

[SOC]

Oh, hi, now we're getting an explanation about how we need biomarkers and objective measures of disease severity in order to evaluate potential treatments. News flash!

I don't want to slag on the speaker, I think she is genuinely working hard to be informative, but these are NOT issues that never occurred to the ME/CFS community. In fact I often think we talk of little else!

We all know all these points she's making. We've been arguing that we need biomarkers forever. Is she saying that if there aren't clear biomarkers, we're just not going to get a med?

 

[Nielk]

Why do they keep comparing to depression?

 

[SOC]

Didn't she say they don't have good measures for depression, but there's still FDA approved meds for it. Is there a discontinuity here or am I missing something?

 

[SOC]

Sounds we are continually screwed by having a multisystem illness in a single system-focused medical world.

 

[urbantravels]

That's true. But she did say that symptoms could be a clinical endpoint - that it wasn't *impossible* to measure them, just "complex" to do so.

In fact they're just saying that now - biomarkers are not essential and not the only measure of drug efficacy.

 

[SOC]

So is the real problem we have that we need to focus on individual symptoms to get meds approved (and on the CDC website)? For example, do we need to have clinic trials for pain meds, and other clinic trials for antivirals, and other clinical trials for GI treatments?

 

[SOC]

It sounds to me like that darned CFS label is getting in our way again. I didn't hear earlier speakers, but certainly Dr Kweder of the FDA didn't seem to understand that we have a multitude of symptoms, many of which could be measured and treated. Fatigue is not the only one, or even necessarily the most debilitating. Sure, we'd love a cure, but right today many of us would be happy with some reasonable, insurance-covered symptom treatment.

And the CDC guy had me climbing the wall. Why can't they put OI treatments on the CDC website for ME/CFS patients with OI, or antivirals for patients with documented viral infections? The list could be substantial.

 

[Valentijn]

The bitter public comments always make me cringe. I know where they're coming from, but it's still unpleasant to listen to.

 

[Nielk]

I feel that there is such a disconnect between the committee members and the public speakers.

They might as well be taken place in different rooms. Because there is no feedback or discussion back and forth, there is no way to gauge whether anyone is even paying attention to us.