Deadline april 26 to effectively save the cfsac!

[srmny]

I just submitted my letter to save the CFSAC.

I am not feeling my best so I just covered the basics. I hope everyone will try to submit something even a one liner is better than nothing.

I am writing to express my support of the CFSAC Committee and the need for the renewal of the committee's charter.

I am a CFS patient and have been ill for 15 years. Although CFS has been associated with multiple body system malfunctions there is still no laboratory test that is definitive for CFS. Because there is no known "cause" of the illness, it has been virtually ignored by medical schools and physicians. Even with the WPI's research into the association of CFS and XMRV, physicians continue to believe that the CFS patient is a "somatizer" with "unwellness beliefs." They are interested only in "de-medicalizing" the CFS patient, preferably out of their offices.

For those of us who suffer with this illness, this attitude isolates us from the medical community. Many of us have come to believe it is better to suffer in silence rather than be dismissed by our doctors, often rerouted to a psychiatrist. Many times I have been handed a prescription with the name of a psychiatrist and told, "there is nothing more I can do for you." I really believe that if that doctor could walk in my shoes he would be horrified at the weakness, pain, exhaustion and confusion I experience everyday. There are millions of people just like me. Without any understanding of this illness you can be assured that there will be millions more in the future. Because we lack the physical ability to demonstrate our government has been able to simply ignore us. We do not march on Washington because we are simply unable to do it. We suffer and die in silence, out of sight and mind.

The CFSAC Committee is a lifeline to patients like me. Many of it's members are the only known CFS physicians and, as patients, we trust that they are representing our interests as they advise the Secretary of Health and Human Services on our behalf. Only recently has Dr. Wanda Jones web cast the meetings of the CFSAC Committee. Hundreds of us have logged in to these meetings to watch and, by telephone and DVD, give testimony to the devastation of CFS and the gratitude of the CFS patient to the committee and all CFS treating doctors. Dr. Jones herself has been a lifeline to the CFS patient.

I am writing today to request that the CFSAC Charter be renewed and Dr. Jones continue in her role as the Designated Federal Officer for CFSAC. I would like for the CFSAC meetings to be held, and web cast, four times a year. Until CFS is no longer ignored, and often scorned, by the medical community the CFSAS Committee is the only source of information on new discoveries and treatments for the CFS patient. When web cast, these meetings give the CFS patient hope that somewhere CFS research is making gains and CFS patients are receiving treatment. This gives very ill patients with no resources a reason to hope that someday they will find a doctor who might be able to help them improve their health.

This past year CFS research has been a real challenge for the CFS patient. The research results are changing rapidly and the variety of special interests with conflicting opinions make it virtually impossible for the typical CFS patient to keep up or understand any of it. We need our committee to break it down for us and tell us which treatments show promise and which ones are downright dangerous. Which viruses are causative and which ones are "passengers". Since most of us have doctors who still think we are "crazy and lazy", these meetings are the only medical consultation most of us get.

I am appalled at the lack of research funds for this disease by my government. I do not believe there is any disease that receives fewer funds than CFS or many diseases that affect more people. I am disgusted by the failure of my government to educate our physicians. Although I can't understand why it is so, I believe that the psychiatric wing of the medical profession has wrongly claimed CFS and my government has been an accomplice. I have listened to my government proclaim, for many years, that they are "in the process" of educating physicians and still CFS is not being taught at medical schools. I know that millions of research dollars were spent NOT educating our future doctors.

I was pleased to see that after causing many years of patient suffering Dr. Reeves was finally removed from his position. I am still concerned that he may not have been kicked upstairs but perhaps given even more power over the CFS patient in his new position.

As you can see from the above, I no longer believe that my government is looking out for the CFS patient. What little faith I have is invested in the CFSAC Committee. I implore you to renew the charter.

srmny /QUOTE]

 

[Jerry S]

Great job, srmny!!!

 

[srmny]

Thank you Jerry!

 

[SeaShel]

Great job everyone!

Phantom and Jenny, I had all ready cribbed from you and sent mine off a few minutes ago. Just didn't have the mojo to get it done on my own, so very appreciative of your efforts.

Shelley

 

[The Phantom]

Thanks

Hi Phantom--

I dropped Gerwyn a PM and asked him to delete his DSM-5 post.
There is a copy already on the DSM-5 thread.

Thanks, Dreambirdie!

 

[jspotila]

William Reeves may be gone from the CDC, but the flawed research definition and the faulty research done with that flawed cohort remain.

Great job, Sarahg! One minor correction is that Reeves is not gone from CDC, just from the CFS research program at CDC.

 

[The Phantom]

You have one more hour to submit to CFSAC

I just hate to see Bad Science as the top thread in Advocacy. So I thought I'd bump this one. Also, compliments to sarahg and srmny on their excellent letters. :Retro smile:

 

[Cort]

Left things to the last minute again! Thanks for starting this thread!

Thanks Jenny and others for all the ideas. Great idea to compare charters- nows the time.

CFSAC Recommendations by Cort Johnson (Phoenix Rising) 4.26/ 2010

Studies suggest that chronic fatigue syndrome (ME/CFS) affects at least 1 million people in the United States, has very high rates of disability and is responsible for tens of billions of dollars of economic losses yearly. These statistics indicate ME/CFS is a major disorder that has major consequences yet they are not the most troubling statistics for the ME/CFS community.

The ME/CFS community is well aware of the effects of ME/CFS , they deal with them personally every day; the loss of financial security, the deferred dreams, the blank stares at the doctor’s office, the friends and family who just don't understand, the fears of declining health…these are some of the personal trials that many people with ME/CFS face regularly and they face them in large part with honor and dignity.

What they cannot understand is the indifference should the federal government has shown to them. It’s almost as if the federal government decided to wave a magic wand that made a large class of people utterly disappear from its view.
For all its multi-billion dollar budgets and it’s commitments to tackle cancer and AIDS and all manners of vicious diseases it’s clear that the NIH, at a very basic level, lacks, for a better word, “balls’.

If you’re lucky enough to become depressed or get infected with HIV or come down with diabetes you may have a severe illness but you have the benefit of an immense infrastructure and hundreds of millions of dollars a year in funding designed to back you in your quest for health. If you’re unlucky enough to get a disorder like chronic fatigue syndrome you’ll have virtually nothing; few proven treatments, few doctors even able to diagnose correctly and even fewer able to treat you adequately and virtually no research devoted to it.

What did people with ME/CFS do to deserve such Third World treatment? They simply came down with a disorder that doesn’t have good diagnostic criteria, is multi-systemic and complex in nature… - and has devastating results. They were unlucky enough to be born in an era when federal officials decided that ‘need’ counts for little in their decisions to allocate funding. They were unlucky to be alive during a time when it was quite alright, year after year, to let 1,000,000 ill people slip through the cracks because they didn't fit in the right box.

The plight CFS patients face every day is not the result of researchers making bad decisions - its result of bureaucrats who either didn’t have enough guts or vision or simply compassion to stand up for all of their charges - not just the ones who fit easily into the right boxes. In the end the main problem with CFS is not the disease; it’s a problem of compassion, of understanding, of simply caring….on those levels - and on the needed dedication to make a difference for people with this disorder - the federal government gets a ‘F’..

The saga of the CFSAC well demonstrates the indifference that has been the hallmark of the federal government's response to chronic fatigue syndrome. Only 18% of recommendations have been acted on (probably a generous estimate) and none of the major ones. Two weeks before the meeting the agenda has still not been posted , none of the four replacements for the outgoing committee members have been announced and the meeting time has been reduced from two days to one day. Despite the interest generated by the XMRV finding every indication is that the CFSAC committee continues to wither on the vine.

Recommendations regarding the CFSAC Charter

• Please renew the CFSAC charter and strengthen it.
• Return meeting times to four times a year to provide continuity to the committee's efforts and to allow them to respond in a timely manner to events.
• Mandate that live video presentations of the committee meetings be required and archived on the site
• Require that a complete list of all Committee recommendations with their dates and the responses to them with their dates be posted on the CFSAC website
• Given the wide variety in treatment care in the CFS community, mandate that a representative from the Agency for Healthcare Research and Quality (AHRQ) be made an ex-offico member
• Require NIH representatives to submit statistics on CFS grants received and their outcomes at every meeting.
• The CFSAC Charter should require that CFSAC members yearly produce a strategic plan for the CFS federal research effort that incorporates budgetary elements in it.
• Mandate that all ex-officio members create a report on the status of their CFS programs including relevant statistics and the fate of CFSAC recommendations specific to their programs. For instance, the Trans-NIH Working Group at the NIH should be required produce a report stating the activities they have engaged in to increase research funding, including the number of meetings they have attended and the length of those meetings, the # of CFS grants applied for her and their fate including, if they were rejected, at which stage of the approval process they were rejected. All reports should identify potential roadblocks in their attempts to secure better a better federal response to CFS and actions they are taking to surmount them.
• Dr. Wanda Jones has won the appreciation of many people with CFS for her commitment to assist the Committee in their work. Please continue Dr. Jone’s tenure.

 

[oerganix]

Sent mine. I pointed out that only 3 illnesses get LESS research funding than CFS, per the NIH website: hay fever, Pick's Disease, and vulvodynia !!!

And that malaria, with 1300 US cases per year, will get $113 million next year, while CFS is slated to get the same as last year: $5 million.

 

[frenchtulip]

I sent mine in today.

 

[justinreilly]

Fiddling While Rome Burns is Not an Effective Public Health Strategy

Sent mine in.

Justin Reilly, esq.
956 13th St.
Boulder, CO 80302
April 26, 2010

'Chronic Fatigue Syndrome' Advisory Committee
US DHHS
cfsac@hhs.gov

RE: Testimony for May 10, 2010 CFSAC Meeting:
Fiddling While Rome Burns is Not an Effective Public Health Strategy

Ladies and Gentlemen of the Committee:

The core strategy of CDC and NIH for responding to the ME/CFIDS (Myalgic Encephalomyelitis/ Chronic Fatigue Immune Dysfunction Syndrome) pandemic can be charitably described as Fiddling While Rome Burns. It is sad that it needs to be brought to the attention of HHS that this has proven, over the past twenty-five years, to be an ineffective strategy. Time to try something new: a response proportionate to the incredible toll ME exacts on our nation.

I. CFSAC Charter

It goes without saying that the charter should be renewed. The time period for the charter should be lengthened. There must, of course, be more meaningful action to address ME. CFSAC has made many excellent recommendations, that if anything, should have been more strongly worded than they are, in my opinion. It is unacceptable that only 18% have been fulfilled. CFSAC needs to be vested with whatever tools will ensure implementation of its recommendations. This includes a great increase in power and an increase in funding. I will leave it to the Committee to decide what changes to its charter are most appropriate for these purposes. Please, be bold in your requests and demands- the protection of public health requires this.

II. Name of the Committee

The committee should change its name to MEAC (Myalgic Encephalomyelitis Advisory Committee) and refer to the disease by its rightful name, that assigned it by WHO ICD since 1968: ME. "CFS" is a misleading and derogatory name which causes significant medical and social harm to patients. "CFS" is totally unacceptable and must be dropped immediately.

III. Disease Funding

Funding for the disease remains at a scandalously low level. Erectile dysfunction receives more than three times the NIH funding of ME. "Native American and Alaskan Health" receives more NIH money per person than ME, despite the fact that, obviously, the vast majority of Native Americans and Eskimos do not have extremely disabling diseases. NIH and CDC funding should be increased between 100 and 1,000 times (not percent) to be on par with funding for similarly disabling diseases. This means a raise from the current NIH funding of $3M per year to the appropriate $300M to $3B per year, and a proportionate increase to CDC 'CFS' program funding.

IV. New Chief of CDC Chronic Viral Diseases Branch

Demand must be made to the HHS Secretary to appoint an outside expert to the post of CDC Chronic Viral Diseases Branch Chief. I have not seen any change made by interim Chief Dr. Elizabeth Unger to the disastrous CDC "CFS" program. This highlights why an ostensibly competent and well-meaning CDC insider is unacceptable for the post in view of CDC's long sordid history regarding ME.

I suggest an expert such as Annette Whittemore, Hillary Johnson, Drs. Nancy Klimas, Leonard Jason, Paul Cheney, Daniel Peterson, Charles Lapp, Lucinda Bateman, David Bell, Judy Mikovits, or Anthony Komoroff.

V. Reeves Definition and Canadian Criteria

The patently inaccurate Reeves Definition of ME must be discarded and the Canadian Consensus Criteria must be adopted by CDC. Reeves Definition has already wasted millions of tax-payer dollars and muddied the science of ME. The only accurate ME Definition- CCC- Must be adopted.

VI. Congressional Inquiry

A congressional inquiry into the malfeasance and nonfeasance attending the decades long "Fiddling While Rome Burns" ME policy at CDC and NIH with the objective of
(A) restoring misappropriated funds,
(B) apportioning additional "back pay" funding of at least $300M for each year
from 1984 to present, and
(C) bringing criminal charges against those responsible for this iatrogenic holocaust
inter alia CDC's William Reeves and Brian Mahy.

Thank you for your service to our nation and your consideration.

Sincerely,

/S/

Justin Reilly, esq.

 

[srmny]

Agenda

I am feeling as though I am not wanted at the May 10th meeting! In the past, has patient participation not been encouraged at the spring meetings? Are we 2 weeks out and still no agenda is posted? Last fall I attended the meeting but it was my first. Until I joined this forum I did not know how to keep tabs on the CDC (thank you, Cort).

I applaud everyone here - I thought all the letters were great. I hope there were more that were not posted. I also hope there is someone on the end of the line reading them. It seems suspiciously quiet at the CDC - it has all year. Am I alone or are there others who are feeling even more ignored than normal? I hardly thought that was even possible!

 

[Dreambirdie]

Wonderful! I am so happy to see these great letters being submitted.

Hugs to all who took time to do this.

 

[creekfeet]

I feel bad about this. I meant to send a letter but I haven't been able to really absorb the background on this. I meant to read all about it and figure out what I should say, but I spend all my energy writing the last few days and am at that place again where it's a challenge to understand one short paragraph, and my hands don't want to stay up on the keyboard. Waaah!

Is there still anything useful I can do?

 

[The Phantom]

I am feeling as though I am not wanted at the May 10th meeting! In the past, has patient participation not been encouraged at the spring meetings? Are we 2 weeks out and still no agenda is posted? Last fall I attended the meeting but it was my first. Until I joined this forum I did not know how to keep tabs on the CDC (thank you, Cort).

I applaud everyone here - I thought all the letters were great. I hope there were more that were not posted. I also hope there is someone on the end of the line reading them. It seems suspiciously quiet at the CDC - it has all year. Am I alone or are there others who are feeling even more ignored than normal? I hardly thought that was even possible!

I agree that the committee seems to be becoming less friendly to patient input, unfortunately. Perhaps they feel that they lost control of the last meeting (and were forced to actually do something--move Reeves out of the spotlight, although it's unclear if he's really out of the picture) and they don't want it to happen again. So it may actually be a sign of a small success and a reason to keep pushing. Also, given that Canada, New Zealand and Australia have restricted blood donation because of XMRV, they may be hunkered down in damage control mode. It's hard to know how much influence the new chairman has. It will be interesting to see him in action.

They did send out a confirmation of a time to speak late this afternoon, but only after they received quite boring testimony on the topic they assigned: the Charter. They may be screening the testimony. I don't see anywhere that we're obligated to actually say what we submit.

I also agree all the letters were great. Hopefully, they'll read them.

Just noticed Creekfeet's post as I was writing. I don't think any of us should feel bad when we can't do something. There will be other opportunities. Our fight is not going to be over on May 10. Each of us has to rest when we need to and help when we can. What else can we do?

 

[Jerry S]

Here's mine for the record.

First, I would like to thank the Committee for their service. I hope these meetings can continue to provide valuable input to the CDCs CFS program. I request that the Committees charter be renewed and outgoing members be replaced in a timely fashion. I would prefer that the time allotted to each person testifying be increased to a combination ten and five minute slots. I dont think three minutes is adequate. I, also, would like to thank Dr. Wanda Jones of the Department of Health and Human Services for conducting last Octobers meeting and providing a webcast which allowed me to see the meeting on my bedside laptop. The videos from that meeting are now available on the Internet and are a valuable resource.

I will be using the term ME/CFS to refer to the actual disease, as defined by the 2003 Canadian criteria (Caruthers, 2003), and CFS to refer to the syndrome created by the CDC that has various case definitions.

I believe I acquired ME/CFS in October 1996. I say believe because I could not find a doctor in Chicago who could come up with a diagnosis for my symptoms severe cognitive impairment, frequent muscle and joint pain, recurrent swollen and tender lymph nodes, disturbed sleep, dizziness on standing, and lack of stamina when performing mental or physical tasks. Whenever I would exert myself at some task beyond a certain level, I would need several days of rest before being able to resume my normal level of activity.

I was a licensed structural engineer in charge of the structural design of large buildings. After one week of a flu-like illness in October 1996, I returned to my job and was no longer able to make any sense of my work. I have never been able to work full-time again. I was unable to pursue my career after nine years of university education and many years of experience. I wasnt able to take part in many of the activities that I enjoyed. None of the treatments I was offered had any lasting benefit. Several doctors encouraged me to exercise. I had been an amateur marathoner so I resumed my running.

Unlike before my illness, I experienced no training effect. Formerly, every spring after a winter layoff and some de-conditioning, I was used to experiencing several uncomfortable weeks before running became enjoyable again. I would gradually increased my usual run before work to six miles and my weekend run to ten miles. By the end of summer, I gradually increased my weekend run to over 20 miles in preparation for the fall marathon. After my illness in 1996, none of this applied. Running never became enjoyable. After jogging a mile one day, it was several more days before I could attempt to run again, and then it was like starting from scratch. So, I started walking. Any attempt to increase my walking distance resulted in days of incapacity.

In the fall of 2004, my symptoms started to become more severe. I was suddenly unable to read, which was one of my greatest pleasures, and could write only with great difficulty. Any exertion put me in bed for days. I read about something called chronic fatigue syndrome and sought help from a doctor, who claimed to have a special interest in CFS, at a downtown university medical center. I was greeted with contempt and disbelief when I presented my symptoms to this doctor. I was barely able to stand, and he told me to get some exercise. In January 2006, ten years after my illness began, I finally found an integrative physician in Chicago who recognized my symptoms and diagnosed me with CFS.

I was initially relieved to be diagnosed with CFS. I naively thought I was finally going to get some real help. I soon learned that the majority of the medical community regards CFS as a wastebasket diagnosis and no effective treatment is available. I told my dentist, when I was having difficulty getting up from her chair, that I had chronic fatigue syndrome. She replied, You should take some Geritol. Now, if someone needs to know about my illness, I say its a form of MS or a neuro-immune disease. Most people in Chicago, in my experience, still have never heard of CFS, and if they have, they think it doesnt really exist or its some kind of mental disorder. This, unfortunately, is true even with friends and family.

I have yet to find a doctor in Chicago who understands the seriousness of ME/CFS and treats it accordingly. I am physically unable to travel to the handful of doctors in the US who are experienced in treating ME/CFS. If I were, I could not afford the financial costs.

I believe the failure of most doctors to recognize ME/CFS and strongly warn patients against over-exertion stems from the CDCs flawed case definition of CFS. The most commonly used case definition is the 1994 Fukuda (Fukuda, 1994) Unexplained persistent or relapsing chronic fatigue is required and any four of the following eight symptoms.

substantial impairment in short-term memory or concentration
sore throat
tender lymph nodes
muscle pain
multi-joint pain without swelling or redness
headaches of a new type, pattern, or severity
unrefreshing sleep
post-exertional malaise lasting more than 24 hours

Note that post-exertional malaise is not a requirement, if four of the other seven symptoms are present in addition to chronic fatigue. Post-exertional malaise is required for a ME/CFS diagnosis using the Canadian criteria. Post-exertional malaise, or exacerbation of symptoms, is the defining feature of the disease. How can the CDC still not make PEM a requirement in its case definition?

Chronic fatigue and two of the eight symptoms, concentration impairment and sleep disturbance, overlap with the symptoms required by DSM-IV for a diagnosis of Major Depressive Disorder. Therefore, some patients with only Major Depressive Disorder with muscle and joint pain would meet the Fukuda criteria for CFS. The CDCs definition of CFS lacks specificity patients with more appropriate diagnoses are included, as are patients with idiopathic chronic fatigue and somatic complaints. How is a doctor to make a differential diagnosis with only guidance from the CDC?

In 2005, the CDC attempted to operationalize the flawed Fukuda case definition for research (Reeves, 2005). This was the so-called empirical definition. A study has shown that the empirical definition allowed 38% of those with Major Depressive Disorders to be classified as having CFS (Jason, 2008). This definition produced a 10-fold increase in prevalence rates for CFS (Reyes, 2004; Reeves, 2007). With such a stunning increase, it is difficult to believe this attempt was made in good faith. One has to wonder just what it is that the CDC has been studying for over 20 years.

Case definitions are vitally important in research. The empirical definition was used in a 2009 study (Heim, 2009) allegedly linking childhood abuse and CFS. What validity can such a study have when most of the subjects didnt even meet the Fukuda criteria for CFS? Yet, the CDC features the Heim study on its Chronic Fatigue Syndrome web page (http://www.cdc.gov/cfs/) as if it were a meaningful piece of research.

Researchers outside of the CDC are now beginning to use the Canadian criteria in selecting a research cohort. Any subject meeting the Canadian criteria will also meet Fukuda. However, subjects experiencing only common fatigue and somatic symptoms are more likely to be excluded if the Canadian criteria is used. The Whittemore Peterson Institute, where the study finding an association between the human retrovirus XMRV and ME/CFS (Lombardi, 2009) was done, uses the Canadian criteria. The CFIDS Association of America in its promising BioBank research program uses the Canadian criteria. The CDC should follow their lead.

The lack of specificity in defining CFS has allowed psychiatrists in the UK, with no special expertise in neuro-immune diseases, to claim their anachronistic theories of CFS are supported by science. A research cohort can be deliberately selected in which very few subjects actually have any physical disease. A study on this cohort then finds CFS has psychosocial causes and that behavioral treatments are appropriate. The lack of a rigorous case definition by the CDC, which has a worldwide influence, makes this possible.

The most common behavioral treatment offered is graded exercise therapy (GET), usually combined with a form of cognitive behavioral therapy (CBT) that encourages patients to overcome their illness beliefs. If CBT/GET were a drug, it would not be found to be safe or effective for ME/CFS by the FDA. Yet, the CDC links on its website a paternalistic GET pamphlet by St. Bartholomews Hospital, London which states,

"You may be worried that any increase in exercise or physical activity could make your condition
worse. Be reassured - research has shown that a guided, gradual exercise programme can
help people who suffer from CFS/ME without causing ill effects."

The research referred to would not meet CDC standards so why should the CDC legitimize it? CBT/GET, in fact, has great potential for harming ME/CFS patients. The risks involved simply do not justify anyone recommending it for ME/CFS. The necessary activities of daily life are already more than many patients can safely handle. I believe if I had been properly diagnosed with ME/CFS in 1996 and warned against the possibility of causing serious damage by continuing to exercise, I would not be as severely disabled today.

I hope under new leadership the CDCs CFS program will begin to correct the tragic mistakes of its past. There needs to be a reemphasis on the pathogenic theory of disease and alterations in the immune system. The CDC should carefully review the information on its Chronic Fatigue Syndrome website. Research using the empirical definition should be removed or clearly marked that the empirical definition was used. Links to the inappropriate UK NICE guidelines should be removed. Patients and doctors should be warned not only to avoid the push-crash cycle but that over-exertion of any type, including graded exercise, runs the risk of causing serious harm.

I believe current XMRV research holds great promise. I would like to see a dramatic increase in ME/CFS research funding. I hope that the CDC can be a part of that future.


References

Carruthers B, et al: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols. Journal of Chronic Fatigue Syndrome 2003, 11:7-115.

Fukuda K, Straus SE, Hickie I, Sharpe MC, Dobbins JG, Komaroff A. The chronic fatigue syndrome; a comprehensive approach to its definition and study. Ann Int Med 1994, 121:953-959.

Heim C, Nater UM, Maloney E, Boneva R, Jones JF, Reeves WC: Childhood trauma and risk for chronic fatigue syndrome: Association with neuroendocrine dysfunction. 
Archives of General Psychiatry 2009; Vol. 66 (1): 72-80.

Jason, LA, Najar N, Porter N, Reh C. Evaluating the Centers for Disease Control's empirical chronic fatigue syndrome case definition. Journal of Disability Policy Studies
2008, doi:10.1177/1044207308325995.

Lombardi VC, Ruscetti FW, Das Gupta J, et al.: Detection of an infectious retrovirus, XMRV, in blood cells of patients with chronic fatigue syndrome. Science 2009, 326:585589.22.

Reeves WC, Wagner D, Nisenbaum R, Jones JF, Gurbaxani B, Solomon L, Papanicolaou DA, Unger ER, Vernon SD, Heim C. Chronic fatigue syndrome a clinically empirical approach to its definition and study. BMC Med. 2005 Dec 15;3:19.

Reeves WC, Jones JF, Maloney E, Heim C, Hoaglin DC, Boneva RS, Morrissey M, Devlin R. Prevalence of chronic fatigue syndrome in metropolitan, urban, and rural Georgia. Popul Health Metr. 2007 Jun 8;5:5.

Reyes M, Nisenbaum R, Hoaglin DC, Unger ER, Emmons C, Randall B, Stewart JA, Abbey S, Jones JF, Gantz N, Minden S, Reeves WC: Prevalence and incidence of
chronic fatigue syndrome in Wichita, Kansas. Arch Int Med 2003, 163:1530-1536.

 

[jspotila]

It will be a doozy

The agenda for the CFSAC meeting has been posted: http://www.hhs.gov/advcomcfs/meetings/agendas/cfsac20100510_agenda.html

A few very very interesting things:

• The Assistant Secretary of Health, Dr. Koh, is scheduled to give a welcome message
• Dr. Elizabeth Unger (temporary head of the CDC's CFS research program) has 30 minutes
• Dr. Jerry Holmberg has 30 minutes for a blood safety update on XMRV
• 90 minutes is schedule for review/update of past CFSAC recommendations
• Only 30 minutes of public comment on the CFSAC charter :Retro mad:
• Two hours of committee discussion on CFSAC charter and by-laws

 

[leelaplay]

Here's the agenda in full:

Chronic Fatigue Syndrome Advisory Committee
US Department of Health and Human Services

http://www.hhs.gov/advcomcfs/meetings/agendas/cfsac20100510_agenda.html


Agenda -- CFSAC Spring 2010 Meeting
May 10, 2010

9:00 am: Call to Order, Opening Remarks, Roll Call, Housekeeping
Dr. Christopher Snell, Chair, CFSAC and Dr. Wanda Jones, Designated
Federal Official, Principal Deputy Assistant Secretary for Health

9:15 am: Welcome Statement from the Assistant Secretary for Health
New Members Statement on CFSAC Interests/Goals
Dr. Howard K. Koh, Assistant Secretary for Health

Introduction of New CFSAC Members

10:00 am: Remarks from Dr. Elizabeth Unger, CDC, Acting chief, Chronic
Viral Diseases Branch

10:30 am: Blood Safety Update on XMRV
Dr. Jerry Holmberg, DHHS, Office of Public Health and Safety

11:00 am: Review/Update of past CFSAC recommendations
Committee Members

12:30 pm: Subcommittee Lunch

1:30 pm: Public Comment on CFSAC charter

2:00 pm: Review and Discussion of CFSAC Charter and ByLaws
Committee Members

4:00 pm: Adjourn

 

[jspotila]

CFIDS Association CFSAC testimony

Kim McCleary submitted written testimony to the CFSAC on behalf of the CFIDS Association. The full five pages will be posted on the Association's website and I'll share the link once it's up. Ms. McCleary has received a three minute slot for public comment, and will give an abbreviated version of the written testimony. ETA the link: http://www.cfids.org/advocacy/cfsac-testimony042610.pdf

Here are highlights of the Association's recommendations on the CFSAC charter:

While there have been a number of deep frustrations with the committee’s function and the lack of direct responsiveness to the recommendations submitted to the Secretary since the first CFSAC meeting in 2003, the CFIDS Association of America remains committed to sustaining this committee and maintaining an opportunity to hear from, provide input into and receive response from the federal agencies of the DHHS charged with meeting the compelling scientific, medical, public health and policy challenges imposed by CFS.
. . .
Much of the disappointment within the community as it relates to this committee stems from the relatively low rate of 18% of the recommendations made by the CFSAC having been implemented by the Department, according to the Federal Advisory Committee Act Database (http://fido.gov/facadatabase). This alarming statistic must be confronted and addressed.

The function of the committee should be expanded to include the following:
a. Develop and annually update a summary of advances in CFS research related to causes, prevention, treatment, early screening, diagnosis or ruling out a diagnosis; intervention, and access to services and supports for individuals with CFS;
b. Monitor Federal activities with respect to CFS;
c. Make recommendations to the Secretary of Health and Human Services (Secretary) regarding any appropriate changes to such activities, including recommendations to the Director of NIH with respect to the strategic plan;
d. Make recommendations to the Secretary regarding public participation in decisions relating to CFS;
e. Develop and annually update a strategic plan for the conduct of, and support for, CFS research, including proposed budgetary requirements; and
f. Submit to the Congress such strategic plan and any updates to such plan.

This text mirrors the Objectives and Scope of Activities as written in the charter for the Interagency Autism Coordinating Committee (http://iacc.hhs.gov/about/charter.shtml), another FACA committee maintained by DHHS.

2. Revise the meeting agenda template to give more time, earlier in each session, to formulation of recommendations by the appointed members. At past CFSAC meetings, the process of developing recommendations does not begin until the very end of the meeting and the process regularly suffers from time pressures and departures by key individuals due to travel constraints.

Regarding ex officio members, the Association recommends a number of changes in terms of adding new members and requiring representation from higher up in the agencies. Specifically, the Association recommends adding representation from the AHRQ and the Centers for Medicare and Medicaid Services.

The Association recommends changing who is appointed from the other offices already represented under the current charter, moving higher up in the food chain. For example, the current NIH representative is the Associate Director for Special Projects and Centers at the Office of Research on Women’s Health. The Association recommends that the representative be the Deputy Director, Division of Program Coordination, Planning, and Strategic Initiatives (DPCPSI), Office of the Director. The alternate would be the Director, Office of Research on Women’s Health.

The Association also recommends adding liaison representatives from the Department of Defense, Department of Education, Department of Labor, and Department of Veterans Affairs.

It is the Association’s strong recommendation that this language be amended to read, “Meetings of the full Committee shall be held not less than two times a year, for a minimum of two days each.”

Notice of all meetings must be given to the public within one week of the meeting per the Government in the Sunshine Act. Because of the special needs of patients who wish to attend these meetings, it would be an apt accommodation to require a longer notice period of 30 days to maximize the opportunity for individuals with CFS to arrange transportation, lodging, and sufficient energy reserves. To ensure this accommodation is observed uniformly, the Association recommends writing it into the charter.

To preserve the opportunity that was begun with the May 2009 meeting, enhancing the ability for members of the public to attend through a live meeting webcast and archiving of the webcast recording on the CFSAC’s website, we urge that both be incorporated as requirements under the revised charter.

Finally, we strongly recommend that the equivalent of one hour of each meeting day be dedicated to receive testimony from public witnesses, delivered either in person, by telephone or by video. The period of time allocated to each witness should not be less than five minutes. Priority should be given to witnesses who have not appeared before the CFSAC in the past 12 months. Witnesses should be permitted to use their allotted time to read a prepared statement, to offer comments on committee reports or discussion or to ask questions of the committee, including ex-officio members; however, in fairness to all witnesses, time limits should be enforced equitably.

 

[Hope123]

Thanks to everyone who sent in a letter yesterday! I sent mine in as well, mostly with comments about the charter as directed.

(For all those who missed this time, mark your calendars for October 1 and begin composing your letter then for the Fall CFS meeting.)

One of the items I asked them to consider is allowing committee members to work in between meetings as currently they are allowed only to discuss items DURING the meeting (hence the 2 hours of committee discussion per Jspotila's post) despite some members feeling that work would be more efficiently accomplished if more in-between time was allowed. I don't know how feasible this is given the constraints of government rules but asked them to consider it.

Also, in regards to getting more funding, asking for more funding during CFSAC is good to get our requests into the public record but it sounds like who we really need to hit are the Congressional representatives who sit on appropriations committee. The prob with this is that many Congressional reps do not want to interfere with determining priorities in science, for good reasons in some cases. One point to consider is to keep pushing the progress that is being made in the science of CFS; I read a book once on how NIH funding is determined and part of what determines funding is timing -- e.g. there is so much potential in a certain area that it is ripe for better funding. Also, that discoveries made in one area will affect many areas -- e.g. connections between CFS/ XMRV and other illnesses.