CFSAC Charter Up for Renewal September 5, 2014

[catly]

Apparently the CFSAC charter has to be renewed every 2 years. I know many patients with MECFS have been more than frustrated with these committee meetings, not to mention the failure to follow through on recommendations and twisting of others (e.g. IOM contract). But if we don't have CFSAC, personnally I think we are F**ked! What other organized voice do we have that links directly to instrumental goverment agencies?

From the Solve MECFS website:
"The Solve ME/CFS Initiative is involved in advocacy efforts aimed at improving the research landscape for the early detection, objective diagnosis and effective treatment of ME/CFS. As part of this effort, we work to validate the burden of illness imposed by ME/CFS in agencies where national policy is made and executed.

The Chronic Fatigue Syndrome Advisory Committee (CFSAC) provides advice and recommendations to the Secretary of Health and Human Services (HHS) through the Assistant Secretary for Health on issues related to myalgic encephalomyelitis and chronic fatigue syndrome (ME/CFS). In addition to sitting on the CFSAC as a non-voting liaison member, SMCI has been involved in the CFSAC through encouraging patient involvement in meetings, by providing public testimony, and through serving on various sub-committees.

Every two years, the charter for the CFSAC must be renewed. With the last renewal being filed September 5, 2012, the charter is again up for renewal. SMCI understands the importance of having a federal advisory committee focused on issues related to ME/CFS and so on August 1, 2014 we wrote to the Secretary of Health and Human Services urging her to renewal the CFSAC charter.

We will keep you posted on the results of this request, a copy of which is posted below."

Here is the letter they sent.

Sylvia Mathews Burwell
Secretary of Health and Human Services
U.S. Department of Health and Human Services
200 Independence Avenue, SW
Washington, D.C. 20201

August 1, 2014

Dear Secretary Burwell:

We are writing to urge you to renew the charter and fully fund the Department of Health and Human Services (DHHS) Chronic Fatigue Syndrome Advisory Committee (CFSAC). The charter is set to expire on September 5, 2014.

The CFSAC was established to provide evidence-based advice and recommendations to you and the Assistant Secretary of Health on issues related to chronic fatigue syndrome (CFS). The issues can include factors affecting access and care for persons with CFS; the science and definition of CFS; and broader public health, clinical, research and educational issues related to CFS.

Chronic Fatigue Syndrome (CFS), also known as myalgic encephalomyelitis (ME), is a complex and severely debilitating chronic illness that affects up to 4 million Americans, according to the CDC. ME/CFS is now recognized by most authorities, including CDC and NIH, as a severe and debilitating disease. Unrelenting exhaustion, widespread muscle and joint pain, cognitive impairments (particularly problems with memory and concentration), unrefreshing sleep, sore throat, headache, and a constellation of other symptoms are debilitating enough to dismantle careers and destroy active lifestyles. Its hallmark, post-exertional malaise, is a return or worsening of all symptoms following even modest physical or mental activity which can last for days or weeks.

Alarmingly, less than 20 percent of ME/CFS patients have been diagnosed, yet early detection and symptom management have been shown to improve the patient’s long-term outlook. The high prevalence of ME/CFS, its low rate of diagnosis and the annual economic toll of up to $25 billion demonstrates the need for increased public and policy-maker awareness and a more potent research effort.

Meetings of the CFSAC provide a vital opportunity for experts selected by the Department to listen to and exchange information with representatives of DHHS agencies, including the National Institutes of Health, Centers for Disease Control and Prevention, Health Resources and Services Administration, Agency for Healthcare Research & Quality, Food and Drug Administration and Social Security Administration. The CFSAC meetings also provide opportunities for patients and advocates to express support for or concerns about ME/CFS programs through public testimony. The CFSAC allows for greater transparency and accountability for ME/CFS programs, helping to ensure the most effective policies and utilization of federal resources dedicated to ME/CFS.

We urge you to renew the CFSAC charter before its September 5, 2014 expiration and to fully support its important work. We appreciate your consideration and look forward to receiving your response.

Sincerely,

Carol E Head
President and CEO, Solve ME/CFS Initiative



cc: Dr. Nancy C. Lee, Deputy Assistant Secretary for Health – Women’s Health
Designated Federal Officer for CFSAC

 

[Iquitos]

Solve ME/CFS is another wolf in sheep's clothing (it's CSA reincarnating itself with a name change), just as the CDC's treatment of patients with ME/CFS. If they're for it, it's probably bad for us, or at least not helpful.

We were f**cked when the CDC sent ME research to the Office of Women's Health. Like it doesn't affect men and children???

IMO, it would be best to let CFSAC die. It has NEVER done anything for us and it looks like to me that it never will. It's just something the government can point to and say they are actually "working on it." The same tactic Solve ME/CFS uses to placate and bamboozle the naive.

How often have we written to our elected officials for help on this and gotten the reply that the Feds are on it, see CFSAC??? It's a mirage. Let's let go of one more illusion that the CDC, NIH or any other US Federal entity is trying to find/fund the cause, cure or treatment of ME.

 

[caledonia]

Chronic
Failure to
Support
All of Us ME Patients
Committee

 

[catly]

OK I get it. CFSAC is a very sore subject.

So if it went a way, how do you think we'd be better off?

I'm not looking to argue, you all have valid points and I'm guessing have followed the "politics" of MECFS in the US much longer than I have. I'm just interested in what you think we could do differently to move MECFS recognition and funding for research further if CFSAC ceased to exist?

 

[caledonia]

OK I get it. CFSAC is a very sore subject.

So if it went a way, how do you think we'd be better off?

I'm not looking to argue, you all have valid points and I'm guessing have followed the "politics" of MECFS in the US much longer than I have. I'm just interested in what you think we could do differently to move MECFS recognition and funding for research further if CFSAC ceased to exist?

I don't think it matters if there is or isn't a CFSAC. It's just a distraction from what's really going on.

We are not the only disease group who has been blocked by the government. We need to join up with the other similar disease groups and prove that there is a pattern of malfeasance by the government against us. We need to go big - really big.

As far as research, we're going to have to do what MS did, which is fund it privately until we find a biomarker and have testing and so forth.

I think this is all going to be very difficult and take a very long time (possibly decades), at which point I will be an old lady or dead from cancer. Which is why I'm working on methylation for myself, and not waiting around for anybody to rescue me.

Now if thousands and thousands of people got better from methylation treatment - wouldn't that be interesting? That could be another pathway - we just figure it out ourselves. This is another reason that I'm sharing everything that I learn along the way.

 

[geraldt52]

While I initially had some hope for it, it has become clear that the CFSAC is nothing more than the government bureaucrats' way of pretending to do something while they continue to do nothing.

Having said that, if I could choose between being rid of the CFSAC and being rid of Solve ME/CFS (CAA), I'd definitely choose being rid of Solve ME/CFS. They've done nothing but offer the CDC cover since Marc Iverson's departure, and a name change won't change that.

 

[Iquitos]

OK I get it. CFSAC is a very sore subject.

So if it went a way, how do you think we'd be better off?

I'm not looking to argue, you all have valid points and I'm guessing have followed the "politics" of MECFS in the US much longer than I have. I'm just interested in what you think we could do differently to move MECFS recognition and funding for research further if CFSAC ceased to exist?

I've been following the politics since 1982. I've watched the live proceedings of CFSAC, hung on every word, watched good researchers participate, watched patient advocates participate, watched CFSAC formulate recommendations for NIH, etc., and then waited in vain for any action on those recommendations. The Sec. of HHS has not even acknowledged RECEIPT of these recommendations, let alone acted on any of them. It seems to get worse every year and it's not just the currant or most recent Sec. of HHS. IMO, it's a waste of good peoples' time and energy while providing the Feds deniability.

Letting CFSAC die would eliminate one more of the ways the Feds pretend to be doing something while they either work counter to our interests or simply do nothing. That is why I think we'd be better off if it disappeared.

What Caladonia said in the next post sounds about as good as anything for what we CAN do. The vast majority of recognition and funding we are getting is from the efforts of private researchers.

And this is also why I don't expect anything good from Ian Lipkins project and won't contribute to it. Once he revealed that he thinks Anthony Fauci is his friend and said that Fauci is good for us, I knew he'd either been fooled by Fauci or he's fooling us, since Fauci has been a villain since the beginning.

 

[geraldt52]

I agree that Anthony Fauci has never been our friend and probably never will be. I'd guess that Anthony Fauci would be one of the people who would be instrumental in seeing that anything the CFSAC does recommend will never be implemented.

I have to admit that Dr. Lipkin's comment re Fauci rubbed me the wrong way as well, Iquitos. But, Fauci is a very powerful man inside the politics of medical research in this country. It wasn't hard to notice how easily Fauci made the money available to dispute XMRV, when that served his purposes. So if you are the director of a university laboratory, that maybe gets 80-90% of it's funding from government agencies, what are you to do? Publicly trash a guy who has the ear of the people with the power of the purse? Wouldn't that just put Dr. Lipkin, and us, in an even worse position than we are? For what purpose? Fauci is in no danger of losing his position.

When you have to beg for funding I'm sure you're careful what you say about whom, and you often might not say what you'd like to say. It wasn't until Frank Ruscetti retired from the NCI that he felt free to say publicly that no one at the NIH really cares a lick about CFS. Retirement is obviously liberating.

I understand if you can't get over Dr. Lipkin's comment, Iquitos, but do consider that his motives might have been better than it might seem. These researchers aren't just trying to help people, they're also trying to earn a living, after investing a huge amount of money in their education.

For those who don't feel they can donate to Dr. Lipkin, for whatever reason, please consider donating to the Open Medicine Institute. I agree with Caledonia that we are going to have to fund the research, at least the early research, ourselves...governments have shown that they don't care and aren't going to help us until it suits their purposes.

 

[catly]

All I can say @caledonia @lquitos @geraldt52 is thanks for your feedback and especially for all of your past and current advocay for this horrible disease.

As a nurse and someone who has worked in managed care and who has also run case management programs where our "modus operandi" has always been to do whatever is possible to advocate for the patients we serve, I guess I'm not ready to sit by and watch and hope and pray that one of the few current MECFS researchers we have will stumble upon the biomarkers and treatment approaches we need to resolve this illness.

I've been watching and posting on some of the Energy and Commerce committees 21st century cures initiative proceedings and to me the writing is on the wall, NIH and private industry research is NOT going to increase in the near future. Maybe it will be good for us, or maybe not, but I think research dollars are going to be more scrutinized and will go to those who are the most organized and best at advocating for their cause. I'm afraid that the MECFS advocay community is just not there. It kills me to see other advocay efforts being acknowled but
the 1 million + in the US with ME are not even mentioned.

Do we want our sons and daughters and grandchildren to faced with the same issues we face today-god forbid they end up with ME?

If anyone has any proactive iniatives they want help with, let me know.

Otherwise, signing off for tonight and from this post.