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

[Ember]

I am not sure which is worse: members not bringing the documents or the govt. being unwilling to have a backup set of documents for a handful of people

What's worse is committee members being unprepared and completely wasting everyone's time.

CFSAC decided to follow up on its case-definitions agenda item through non-existent sub-committees, and then (when most members had left) the acting Chair noticed that there was no time left for for any sub-committee reports. No matter, apparently. You can read them later...

CFSAC is not taking our lives seriously.

 

[SOC]

What's worse is committee members being unprepared and completely wasting everyone's time.

CFSAC decided to follow up on its case-definitions agenda item through non-existent sub-committees, and then (when most members had left) the acting Chair noticed that there was no time left for for any sub-committee reports. No matter, apparently. You can read them later...

CFSAC is not taking our lives seriously.

Majorly sloppy committee and meeting management. If the main work is done in subcommittee, then subcommittee reports should come very early in the meeting so that there's substantive information to discuss. Voting on anything should not be left to the final few minutes of the meeting. Subcommittees should be given clear, concise direction. The subcommittee chairs should be named in committee and acknowledge the tasks given so it's in the minutes.

CFSAC organizers are not taking our lives seriously and are wasting everybody's time and effort.

 

[Roy S]

Anybody else notice what Laura Hillenbrand's father used to do in Washington?
　
http://www.elle.com/Beauty/Health-F...ently-so-unwell-that-she-scarcely-leaves-home

 

[alex3619]

Did you catch the comment about how the government bureaucrat was concerned that docs would have to be duplicated if sent out in advance. In the past, members would forget to bring them so that they would have to be produced again. What is this the 1st grade? I am not sure which is worse: members not bringing the documents or the govt. being unwilling to have a backup set of documents for a handful of people

I get the distinct impression that CFSAC is severely underfunded - another sign that it has almost no priority with anyone.

We are told that a powerful message is on the way. Powerful only counts if its substantial - it involves real, material change. Otherwise its just propaganda.

I agree with most of the complaints but I do not think its CFSAC's fault in the main - I think they are created and maintained as a toothless kitten. All roar and no bite - well, at least a little meow anyway. The fault lies higher up in the hierarchy. Like so many advocacy initiatives that sound good (not just CFSAC), I am starting to think that many of these serve one purpose only - to distract and occupy the patient community so we don't cause problems. The message is that they are listening and trying to help. The reality is that few listen and there is still almost no help.

To give an example, for a disease that costs the world around $100 billion per year, it is inconceivable to me using a rational mind set that the Rituximab trials are still short $10 million. Would not the governments of the world want to save a trillion dollars every ten years, at the cost of ten million to find out if Rituximab is a cure or treatment? Would not the US government, and even my own government in Australia, be clamoring to fund a trial of the cure? Especially when the drug is about to go generic? This is just madness. To answer the question would cost a tiny tiny percentage of the yearly losses for almost any advanced country.

Bye, Alex

 

[WillowJ]

by searching for HHS health committees, it seems the other ones are much more proactive and active between meetings. The Alzheimer's meeting has slides already prepared by the Committee; the PHS Oral Health Coordinating Committee has members attending other professional meetings;

the Interagency Autism Coordinating Committee is itself charged not only with providing advice to the Secretary of DHHS but also with facilitating information exchange among the alphabet soup and with educating the public! admittedly, this is about Federal activities, but it is "by providing a public forum for discussions related to ASD research and services".

As Dolphin mentioned used to be the case for our Committee, some of these others are called "Coordinating", not "Advisory", Committees.

I think we should advocate to be a Coordinating Committee with more powers. Specifically, power to provide public, education sector, and health sector education directly from CFSAC.

Also I think the press release idea is fabulous. If CFSAC has that power and doesn't use it--let's use it. If doesn't have that power, let's get it.

It's quite true that newspapers, and probably doctors, would credit the Department of Health and Human Services CFS Advisory Committee. But let's change the name to Department of Health and Human Services ME/CFS Advisory (or Coordinating, if that makes a difference) Committee. (Then whatever the disease name getx changed to, if we can get them to work together and get approval from wherever and actually DO something about that.)

 

[Ember]

To give an example, for a disease that costs the world around $100 billion per year, it is inconceivable to me using a rational mind set that the Rituximab trials are still short $10 million.

At the risk of sounding cynical, the Rituximab trials were not the brain-child of the CDC.

 

[CBS]

The most productive thing we could do now (and should have done a decade ago) is to peacefully prevent the next facade (meeting) from taking place. I suspect that the unprepared and disinterested committee members would actually be relieved due to the high likelihood that if the meeting were to go forward they would embarrass themselves once again.

A vocal/non-violent group chained to the doors of the building and filmed by the media would be a good start.

Time to save the date!

 

[jspotila]

by searching for HHS health committees, it seems the other ones are much more proactive and active between meetings. The Alzheimer's meeting has slides already prepared by the Committee; the PHS Oral Health Coordinating Committee has members attending other professional meetings;

the Interagency Autism Coordinating Committee is itself charged not only with providing advice to the Secretary of DHHS but also with facilitating information exchange among the alphabet soup and with educating the public! admittedly, this is about Federal activities, but it is "by providing a public forum for discussions related to ASD research and services".

As Dolphin mentioned used to be the case for our Committee, some of these others are called "Coordinating", not "Advisory", Committees.

Back in the day, we did have a Coordinating Committee but the GAO report in 2001 recommended switching to the Advisory Committee. I'm trying to dig up the original report. I've blogged about this a bit, but plan a much more detailed post comparing the structures of various committees. The Alzheimer's and Autism committees were both authorized by Congress with specific tasks to accomplish for DHHS.

I agree with Alex that the real fault lies farther up the food chain. If the Secretary wants this committee to be effective, you can be sure that it will be. We need to get to Koh and Sibelius. That's where the decisions are getting made.

 

[Andrew]

My impression of the committee is they make recommendations and the Secretary ignores them.

But here are some reasons to testify anyway.

1. The meeting is an event that draws the community of patients together.
2. To give ideas and info to committee members, which they might find helpful in whatever advocacy they do outside of the committee.
3. To give ideas and info to other patients, which they might find helpful in whatever advocacy they do outside of the committee.
4. To educate new committee members, who in turn might affect their work place.

 

[floydguy]

Autism:
http://iacc.hhs.gov/about/

Several things jump out:

- The rank of the member from govt. is very high including Collins himself
- Sebellius appoints
- Non-profits and others are on committee
- They met 10 times last year, some were committee meetings and sometimes by phone
- Established by law

 

[Seven7]

My humble opinion.

1) We need a discipline (specialist or GPs) Owner: Temporary until we know more about illness.
I personally for now think we need a discipline called CFS specialist until we know more.
2 )We need a name.
2) We need 2 Case definition: Clinical, research.
3) We need better Data collection.
4) We need Money.
5) We need education....

In summary

1) We all make a rational list of our needs.
2) Prioritize List.
3) We take first item in list and work it out. We include community and find consensus. Funds and Make it happen.

If we all sit to wait for this people to solve all these issues Good luck!!!
We can work and submit the work to them. Give them options and this will speed up the process.

 

[taniaaust1]

The patient testimony is an interesting issue on its own, I think. An hour and three quarters was assigned to that and I wondered whether the balance was right, given that while the panel are listening to testimony, they're not discussing how to help us. Some of the testimony about personal experience with the disease was extremely powerful (the lady who needs the saline to stay conscious, for instance - that made me cry). I think that's necessary. There was some great testimony (for example, from Dr Grobstein) about what CFSAC should be doing. That's also necessary. But is there a way to make the testimony more effective in terms of getting the committee to be more effective?

I wonder if patients/supporters giving testimony could coordinate so that there's a unified message - personal testimony from some people describing their suffering, advocacy testimony from others listing the same few, carefully selected priorities that we want from the committee. Maybe that's not practical; I don't know how the testimony people are selected (lottery?).

I personally wouldnt like to see the patient testimony's time cut back... it helps keep the meeting at the serious level it needs to be and also gives anyone there who isnt truely aware of the effects of ME/CFS .. time and enough emotion for it to help sink in how affected some are. That understanding truely needs to be there as without it enough feeling there, other parts of meeting may not be as deeply considered.

I personally do think that committee members without an extremely good reason (eg sickness) shouldnt be leaving early such important meetings.

 

[taniaaust1]

Hi floydguy - I guess the question is, is Rituximab already enough of a breakthrough or did the Norwegian govt jump the gun? Don't know.

Still thinking aloud, if CFSAC can issue press releases, can it issue one complaining about the fact that its advice is endlessly ignored while patients are sick and dying? Can they make a big thing about President Obama's promise to look into ME? Other govt organisations might treat CFSAC as though it doesn't matter but would the press?

I may not understand things correctly but if they did that... wouldnt it destroy the relationship this commitee has with gov orgs etc? They are like a big link between us and the gov... maybe if they did that it would put an end to all by going to the press about the gov orgs not listening at all. Once again a case of us and them.. and not working together to solve issues.

I do thou completely agree that press releases thou could be good if they could do them on some things.. I wish more media would get interested in these meetings and report it.

 

[Ember]

We can work and submit the work to them. Give them options and this will speed up the process.

We could join Dr. Joan Grobstein in demanding that the CDC abandon its Fukuda and empiric definitions (http://cfspatientadvocate.blogspot.co.uk/2012/06/one-voice-dr-joan-grobsteins-written.html).​

 

[taniaaust1]

After the patient testimonies, they seemed genuinely sympathetic of the hardship this illness can cause, but they still seemed to think that ME/CFS can be managed by a Primary Care Physician. Hello?

We have next to no doctors. We have essentially no research funds. We have no adequate case definition. We have no standard treatment plan. We have trouble getting disability. We can't routinely get the medications that can improve quality of life. We can't get insurance to pay for a lot of the treatments that can help because of {see above}. And so on....[

That's one part which really stood out to me... that it is thought those who have ME can be managed by primary care physician. What crap.. maybe some of the milder cases can be but the more severe cases certainly cant be.

I must of seen over 30-35 different ones over the years and NONE of them can manage my case (I get over 90 different symptoms with the ME). Thou I are in Australia.. my case is still a good example as primary care doctor situation wouldnt be any different to Amercia.
A quote from one of the primary care physicians "Your case is too complex, no general practitioner could manage you"... while others have simply refused to keep seeing me as a patient due to "we dont have time to research your condition".. One dropped me as a patient after he'd rung ambulance and had me taken to hospital for my ME symptoms eg severe tremors, spasms, not able to walk around a corner without falling into their wall, I was staggering everywhere, only for him to find out it was part of the "ME/CFS" ive been diagnosed with. (he wouldnt believe me that this illness can cause such severe symptoms).

Sorting out anything with me is a nightmare, due to med reactions and also treating one thing with something often makes other conditions I have with this illness worst eg with so many different symptoms and so many different coexisting ME related conditions, clashes often happen. eg IBS of constipation type due to the ME, due to hyperinsulinemia also hypoglycemia I cant have sugar (22g was in one dose of laxative), due to MCS cant have artifical sweeteners (I think that also makes me react to my insulin levels worst too)...other meds have gluten in them. I needed laxatives recently as fibre no longer working.. only to find out there wasnt anything in pharmacy I could have(except supposities) due to large amount of sugar in products or sweeteners in them.

After drs two (actually 3) attempts to help me without luck as it turned out I cant take the things recommended by doctor... he's out of ideas (two bad reactions or things havent worked).. so yet ANOTHER specialist I need to be refered too... and in the meantime while sorting out the mess, Ive now seem to have developed a large rectocele into my vagina, due to the untreated constipation from ME... so my bowel is now nearly hanging out of my body etc.

Its a MESS seeing the amount of different specialists I need to see for EACH different issue I have just cause the primary care doctors cant deal with them. We NEED specialists trained in ME/CFS and all the common issues this patient group has due to the disease. No primary doctor has been able to deal with POTS (they dont even know what it is).. even no specialists trained in that.

Should anyone have to be under a gasto, a gyno, an allergist, a physio, a psychologist (to deal with the stress from doctors not having a clue nor knowing what tests to do eg tilt table for those with orthostatic intollerence), a nutritionist, a social worker, an endrocrinlogist and having to go to appoinments to all these (Im currently seeing ALL those, sometimes even more specialists are involved in my care) just cause ones primary care physician cant deal at all with the stuff the condition does, (the one Ive got now would only take me on only if had all my ME stuff under someone else overseeing it).

I also do have a CFS specialist.. (I say CFS specialist ashes not up with ME issues..only CFS ones.. and hence things like my severe orthostatic hypertension and completely dysfunction BPeg 80/59 laying.. 170/136 wen standing are untreated. He's partly treating my POTS thou I probably need IVs.. I had a collapse only yesterday on the ground outside of the pharmacy and ended up having to crawl back inside and lay on their floor with legs up on chair). The to top that off the stress of dealing with the constipation and what that is doing to my body.. caused another herpes outbreak for me last night.

Primary Care Physicans are not capable at all with dealing with the disease I know as ME!! (I keep being sent to heart clinic by various ones.. who think my collapses (sometimes completely unconscious) are heart issues due to them having no awareness of POTS (very common in ME).. so much going around in medical circles has happened before I can end up getting correct diagnoses for my ME symptoms.. Fortunately due to me being on disablity for the condition.. it isnt me its costing much but the Government!! for all those unnecessary things over and over) . If ME was under a certain specialist with knowledge on the illness and the things it causes, this wouldnt be happening. (I have 1-3 medical appointments a fortnight!)

Wake up Governments.. we are costing you HEAPS.. due to this illness not being put into a certain medical specialist fields hand and them not recieving training. (it dont help that CFS and ME is also being mixed).

I cant now remember who made the comment at the meeting that primary care physicians can manage but if it was the CFSAC themselves.. I find the comment even more shocking as that then would show just how little the commitee understands the illness and how with many of us primary care physicians cant manage.

 

[mezombie]

by searching for HHS health committees, it seems the other ones are much more proactive and active between meetings. The Alzheimer's meeting has slides already prepared by the Committee; the PHS Oral Health Coordinating Committee has members attending other professional meetings;

the Interagency Autism Coordinating Committee is itself charged not only with providing advice to the Secretary of DHHS but also with facilitating information exchange among the alphabet soup and with educating the public! admittedly, this is about Federal activities, but it is "by providing a public forum for discussions related to ASD research and services".

As Dolphin mentioned used to be the case for our Committee, some of these others are called "Coordinating", not "Advisory", Committees.

I think we should advocate to be a Coordinating Committee with more powers. Specifically, power to provide public, education sector, and health sector education directly from CFSAC.

Also I think the press release idea is fabulous. If CFSAC has that power and doesn't use it--let's use it. If doesn't have that power, let's get it.

It's quite true that newspapers, and probably doctors, would credit the Department of Health and Human Services CFS Advisory Committee. But let's change the name to Department of Health and Human Services ME/CFS Advisory (or Coordinating, if that makes a difference) Committee. (Then whatever the disease name getx changed to, if we can get them to work together and get approval from wherever and actually DO something about that.)

The Autism and Alzheimer's Advisory Committees are more powerful than the CFSAC because they were created as part of legislation to fight both diseases. In each case, these committees are charged with implementing the law and must report to Congress. Congress has no authority over CFSAC, which only reports to the Secretary of Health & Human Services. That makes a huge difference, IMHO.

 

[WillowJ]

The Autism and Alzheimer's Advisory Committees are more powerful than the CFSAC because they were created as part of legislation to fight both diseases. In each case, these committees are charged with implementing the law and must report to Congress. Congress has no authority over CFSAC, which only reports to the Secretary of Health & Human Services. That makes a huge difference, IMHO.

so what do we need to do to get the other kind of Committee?

 

[mezombie]

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.

 

[floydguy]

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.

Good luck with that. I really don't see that being a priority of Congress unless as I mentioned before there is a break through that makes the science more clear or there is some media event that puts pressure on Congress to do something. 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. If there is a breakthrough then go back to the govt. for some funding. Another thought is to attempt to piggyback on other areas where the govt. is funding research that might be helpful like Gulf War Illness, maybe autism, MS, etc.

It would be interesting to know what happened in 2001 that GAO (non-partisan, right) advised breaking up that committee. I also wonder how effective the autism community thinks there "special" coordinating committee is. Higher ranks and more resources may just translate into more BS and more sophisticated govt. inaction.

 

[SilverbladeTE]

Accept it folk, this garbage is DESIGNED to fail, to be a "cock block"
Doesn't matter a damn if some of the folk involved are great/on our side, because the bureacrats etc who set this up design it to FAIL!

We will get no help from this garbage unless you have epidemics, sucide on TV, massive scandals or other idotic hype, news worthy trash, OR, some way for someone to make huge amounts of cash that won't threaten the government/corporations, blech

This is classic political neutering of a problem, put THEIR people in place OR ensure the ones who could achieve something are damn well "prevented from upseting the apple cart":
ensure maximum fear, confusion, doubt, uncertainty and complete pointless waste that some assholes can then use to:

a) Prove they care (TM!) Yes, pat the cripple on the head and look good on TV!
in otherwords, all political "feel good" with no substance

b) Make money for someone somehow, or at the very least, prevent a major party campaign contributor form losing money!

Britian's got great track record of such crap, making damn sure it takes so long for victims ot get to the truth, they die before they can claim compensation...even though that usually costs the government a hell of a lot more money in the long term, the assholes do not care for anything other than short term and preventing any scandal emerging even if they had nothing to do with it.
So they set up carefully weighted "committees" ful of bland gutless bureacrats and folk they cna influence and lo and behold! The Committee says: "UH UH! NO HELP FOR U!" and they shuffle off to enjoy their now secured pensions.

So, do NOT look to such government-backed "circle jerks" for any help, people, they do not want you to GET any help.
5000 ME victims publicly peeing on the CDC's steps in contempt would have vastly more useful effect
(See "ACT UP" for hard proof of this)
Nothing will change with this illness unless it comes or is spurred from outside the government/pharma corp "wall of silence".

The government only gives a damn if you hold a gun to it's head!
Not suggesting a literal gun! merely force majeure of the 21st century realities
Things the politicians cannot ignore or control or spin, like huge public outrage when some incident goes viral on Youtube, caught taking bribes from pharma/insurance corps etc
you have to go for their throat and KEEP attacking the bastards, there is no compromise, or they will take your control of your movement, neuter it and let you die off, unheard, unable to bother them. happened many times in many ways over the past cnetury with many movements.

sorry for the cynicism, but it's the way the Real World (tm) works, folks