Watch CFSAC meeting online Monday 9-4 EST May 10

[Cort]

Good point. It's always been kind of like that with the "CFS" and HPV programs being known from the beginning as the Viral Exanthems (ie Diseases) Branch headed by 'virologist' William Reeves who then was appointed a professor of psychiatry (!!) at Emory after feeding their psychiatry department all the freudian "CFS" work they could handle. All the while "CFS" was officially classified by CDC as something like a 'High Priority Viral Disease.'

There were two reorgs, but the new names of the Branch and disease classification are just rewordings on the theme of Danger, Danger, Horrible Pandemic Viral Disease (wink, wink's added if they're talking among themselves) accompanied by close to zero action, excluding malfeasance.

It would cause me less cognitive dissonance if they would just call it "the Crazy People Unwellnesses" Branch of the "Lowest Priority Unwellnesses" Division. At least then their whole articulated strategies would be aligned with their actions.

.

I agree that its astonishing that the program is in a branch of the CDC that doesn't want to apply its know-how to it. What a misconnect!

 

[gracenote]

Was that exactly what she said? I completely missed that...

See the thread parvofighter started:

Clarification by Dr Jones of CFSAC comments on XMRV

 

[citybug]

On a positive note: Dr Holmberg's CFSAC testimony
I transcribed parts of Dr Holmberg's testimony (apologies if this is duplicate - I just don't have the energy to go through this whole thread). My take is that there is more confirmatory XMRV/ME/CFS work in the pipelines. Here's why, based on Dr Holmberg's words on the following:

On the importance of blood collection/preparation procedures (van Kuppeveld, wake up!):

"One of things we have to do is identify time between collection and preparation of the sample, and the differences between whole blood preparations and peripheral blood mononuclear cells, or PBMC’s.

In other words, collection procedures - such as those used by Dr Singh etc. - appear to be important to finding XMRV. Geez, I wonder if 20-year old blood passes muster?
​

On whether the 3 negative studies can be considered "level playing field" replication attempts...:

As you can see with the next slide, there’s um numerous publications that have come out since the October 8th publication. The 3 that followed in January and Feb were – um - reported – negative results, but I think that as we develop more and more procedures, and also be able to standardize procedures, that I think we’ll all be playing on a level playing field, and that I’m sure – I would believe – there would be even articles waiting in the wings right now to come forward.

My read is that there are positive studies (just as Ruscetti, Coffin, & Orthomolecular implied) waiting in the wings. Keep in mind also that Holmberg et al are not working with Wesseley, van der Meer, van Kuppeveld in standardizing procedures. They're working with Ruscetti, Mikovits, etc...

​

On "confounding" results, and what we can expect in the pipeline:

What we know today is that there is confounding association between XMRV and chronic fatigue syndrome, and with more data coming out, maybe the results may not be so confounding.

Taken together with his other comments, I believe it's significant that Holmberg didn't say, "with more data coming out, maybe the results may be more confounding".

​

On the 1st International XMRV Workshop with NIH:

“I think this is great as far as being able to put people together as far as some of the information that is currently available . And I do believe that within the next several months there will be even more information coming available, that we DO (his emphasis) need to have a forum to be able to address some of these issues.

Why have an NIH workshop on XMRV if there is no connection between XMRV and disease? This guy is sitting on positive info that he can't publicly declare yet - that's my read...Interesting that those rebuttal letters in Science today are citing negative prostate cancer studies as supporting their contention that the XMRV/ME/CFS link is in question. From what Dr Holmberg is saying, and is not saying, we can expect more clarification, specifically linking XMRV to disease in humans.

​

Reading the tea leaves

Holmberg is like a duck: trying to appear calm on the surface, and paddling furiously under the water. Not at all surprising really if they expect mass panic at the presence of another cancer-causing HIV-like retrovirus in the blood supply. His team has likely had to weigh the following dilemma. Which is worse from their perspective: to start a mass panic, and to not even have a validated XMRV test available? Or to rely on the various "safeguards" which currently exist - to prevent blood donation from aggressive prostate cancer patients and/or ME/CFS patients? I would bet a Canadian Loonie (that's our lowly dollar) that they have consulted their lawyers and determined that their butts are covered - and that from a public health perspective, they're doing the right thing. Whether I agree with this is another matter entirely. Given the relapse/remitting nature of ME/CFS, and the very real possibility of remitting patients to donate blood, I'd say they are on thin legal ice.

But what's somewhat reassuring is that they are busily getting their "ducks in order", so they're not caught flat-footed when the news breaks.

"So we are looking at the different possibilities as far as strategies in a risk assessment if it does prove that XMRV is a causative agent for disease in man, that we will have procedures in place to mitigate the risk ."​

Thank you parvo for transcribing some of Dr. Holmberg. I hope you can do all that section. I can barely take notes. I thought his was the best testimony and has the most information. Yeah, the gov't doesn't want to declare the danger to the blood supply until they absolutely have to (and it is great CFSAC recommended to ban it), but he was the only rep telling us what they are doing. The Blood group appears to be working hard and studying all the literature available. I thought he was saying they were really reading up on everything about XMRV. Does anyone know what a NAT neucleic acid test is related to serology? We still don't know if the Emory group that published a study is participating in the sample exchange, but he gave the contact, Simone Glen and mentioned NCI antibodies test. I think he deserves big thanks, and maybe would give more info. I think he knows how bad the retrovirus is.
I still have no clue what else the CDC is doing re XMRV, or who would report on it. Could they have asked Dr. Unger? What about Miller on the panel? Are they doing any studies besides working on a test? Holmberg said one CDC lab and 2 FDA labs?
So in my mind the rest of the CDC and NIH are doing nothing as objected to by Dr. H. I'm even more angry about Dr. Hannah watching it again. It's like they are humoring WPI, when WPI is the only place in the world that is working on XMRV in connection with CFS and Lyme, MS, GWS, FM Autism some up to 35%-that is huge in itself. ...err can't think and fume at same time. The missing patient testimony and lack of XMRV questions means they aren't even talking about the next step of patient treatment --for them that is after testing 1000 healthy people and epidemelogy studies. I want to tell them that patients want AZT and other known anti-xmrv drugs now, where are the trials? Tests may not be definitive for a while, WPI is the only place doing multiple tests on humans.
Dr. Hanna is a psychologist and Associate Director at Office of Research on Women's Health. But she is also chair of Trans NIH Working Group on CFS which meets monthly. Are they the ones that set up review of CFS grants or has it all been moved to CDC? I think we need to reach these people too. Short on retrovirologists. We never know who may champion us. There addresses and emails are on the link.
http://orwh.od.nih.gov/cfs.html
http://orwh.od.nih.gov/cfs/cfsWGroster.html
Maybe Dr. Unger could redirect some CDC energy, funds if they start one xmrv study in cfs.
I don't the CFSAC should be afraid to ask for the Centers for Excellence. Sebellius has money for new clinics for underserved populations.
Dr. Koh was very personable and smart, but had no clue about anything going on with ME/CFS. I hope he wants to learn.​

 

[oerganix]

This is correct. The full CFSAC can only meet in public, under the federal Sunshine laws. Committees, on the other hand, can meet as often as they like, and you are correct that it was discussed during the by-laws topic.

One thing that amazed me is that NO ONE asked Dr. Unger (or Dr. Milller) what her budget request was for the CFS program for FY2011.

According to the NIH website, CFS is slated to get $5 million for research in 2011...the same as this year. And the same amount the Whittemore's put up to start WPI. Pathetic.

If there are 4 million CFS sufferers, as per CDC, that's $1.25 per patient. The 1300 Americans who got malaria last year will have more than $89,000 per patient directed at their disease next year, and the cause and treatment are already known.

 

[Dolphin]

According to the NIH website, CFS is slated to get $5 million for research in 2011...the same as this year. And the same amount the Whittemore's put up to start WPI. Pathetic.

If there are 4 million CFS sufferers, as per CDC, that's $1.25 per patient. The 1300 Americans who got malaria last year will have more than $89,000 per patient directed at their disease next year, and the cause and treatment are already known.

I think quoting other illnesses can be risky.

I don't know much about malaria but
"According to the World Health Organization there are 300 to 500 million clinical cases of malaria each year resulting in 1.5 to 2.7 million deaths." (source: http://archive.idrc.ca/books/reports/1996/01-07e.html ).
This little piece mentions the problem of drug resistance and also that the amount of the world affected is growing.

Malaria can also land people in hospital which can be expensive to health systems.

I remember at one of the previous CFSAC meetings (I think it was or maybe the CDC feedback meeting) somebody complained another condition, which didn't have the best of name, got a similar amount of funding even though it was a lot rarer. However, when I looked, the condition was something like Alzheimer's in children so criticising such funding might backfire if somebody had direct or indirect knowledge of the condition and thought it also deserved funding.

 

[citybug]

According to the NIH website, CFS is slated to get $5 million for research in 2011...the same as this year. And the same amount the Whittemore's put up to start WPI. Pathetic.

If there are 4 million CFS sufferers, as per CDC, that's $1.25 per patient. The 1300 Americans who got malaria last year will have more than $89,000 per patient directed at their disease next year, and the cause and treatment are already known.

That shows what can happen when you have someone higher up in the food chain backing you, and this is a priority of Obama's. I think we should write to this guy too, not putting down other program, but telling how much of an emergency XMRV and CFS are. (I keep looking at the CDC and NIH charts trying to figure out where we are.)

Rear Admiral Ali S. Khan is currently an Assistant Surgeon General and the Acting Director of the National Center for Zoonotic, Vector-borne, and Enteric Diseases, Centers for Disease Control and Prevention [CDC], Department of Health and Human Services.

Acting Director of the National Center for Zoonotic, Vector-Borne, and Enteric Diseases (ZVED)

Rear Admiral Ali S. Khan is currently an Assistant Surgeon General and the Acting Director of the National Center for Zoonotic, Vector-borne, and Enteric Diseases, Centers for Disease Control and Prevention [CDC], Department of Health and Human Services. He joined CDC and the US Public Health Service Commissioned Corps in 1991 as an Epidemic Intelligence Service officer and over the past decade has responded to and led numerous high profile domestic and international public health emergencies including hantavirus pulmonary syndrome, Ebola hemorrhagic fever, monkeypox, avian influenza, Rift Valley fever, severe acute respiratory syndrome [SARS], the Asian Tsunami, and the initial public health response to Hurricane Katrina in New Orleans.

In 1999, he served as one of the main architects of CDC's public health bioterrorism preparedness program which upgraded local, state, and national public health systems to detect and rapidly respond to bioterrorism. As Deputy Director of this new program he created the Critical Agent list, which has remained the basis for all biological terrorism preparedness; published the first national public health preparedness plan; initiated syndrome-based surveillance; and designed the key focus areas to improve local and state capacities. These preparedness efforts were crucial in limiting the scope of the first anthrax attack during which he directed the CDC operational response in Washington, D.C.

Dr. Khan’s professional career has focused on bioterrorism, global health, and emerging infectious diseases. While serving as the interim Director for CDC’s global infectious disease activities he designed CDC’s joint field epidemiology and laboratory training program. He helped design and implement the new $1.2 billion 5-year President’s Malaria Initiative and has been engaged in guinea worm eradication activities. More recently, he spear-headed a pilot project that focused on improving knowledge exchange, integration, and delivery for all public health practitioners.

 

[oerganix]

I think quoting other illnesses can be risky.

I don't know much about malaria but
"According to the World Health Organization there are 300 to 500 million clinical cases of malaria each year resulting in 1.5 to 2.7 million deaths." (source: http://archive.idrc.ca/books/reports/1996/01-07e.html ).
This little piece mentions the problem of drug resistance and also that the amount of the world affected is growing.

Malaria can also land people in hospital which can be expensive to health systems.

I remember at one of the previous CFSAC meetings (I think it was or maybe the CDC feedback meeting) somebody complained another condition, which didn't have the best of name, got a similar amount of funding even though it was a lot rarer. However, when I looked, the condition was something like Alzheimer's in children so criticising such funding might backfire if somebody had direct or indirect knowledge of the condition and thought it also deserved funding.

I am very much aware of how much malaria is a problem in the rest of the world outside the US. The cases and deaths you mention occur mostly in Africa, Asia and tropical Latin America. Ninety percent of world deaths from malaria are in sub-Saharan Africa, most of them children.

I live in a country where people die of it regularly. In the last few minutes a government truck went up and down my street spraying for the mosquitos that transmit it. I know people who have had it and survived and know of some who have died from it. It is a disease of poverty and very much preventable. The cause has been known for over 100 years. Research now is mainly in search of a vaccine. Interestingly enough, artemisinin is one of the drugs used to treat it. If I get it here, it will probably kill me.

By the NIHs own reckoning, there were only 1300 cases in the US last year, all from travelers returning from other countries. When it comes to funding research I feel very strongly that 1-4,000,000 Americans and an estimated 17,000,000 others in the world who have ME/CFS deserve PARITY IN RESEARCH FUNDING. At $1.25/patient for CFS vs over $89,000/patient for malaria, think the NIHs priorities are screwed up and I will continue to say this as loudly as possible until there is more PARITY IN RESEARCH FUNDING. The US also sends millions in foreign aid to those countries with malaria for prevention, treatment and research. In fact, I have taught English to some of those researchers here in Nicaragua, so that they could better participate in international conferences on the subject. Some of that funding is spent to fly them around the world.

I am saying not to fund malaria research. I am saying it is out of balance with what CFS sufferers deserve and need. We American PWCs are being treated worse than people in third world countries, when it comes to researching our illness, and maybe even the treatment of our symptoms.

Regarding the "alzheimers in children" disease, that may be Pick's Disease, which I have previously mentioned here as one of only three diseases that get less funding than CFS: Pick's Disease, hay fever and vulvodynia. I have never said these illnesses do not deserve funding. I am complaining about where CFS, which is a disabling illness costing the millions of sufferers and the nation hundreds of millions of dollars, ranks in the long list of diseases being funded for research.

I myself have been unable to earn at least $900,000, unadjusted from 1988 value of the dollar, since becoming disabled. Even if they don't care about our suffering, they ought to be interested in the taxes the IRS is not getting from us, and the disability payments going to those of us lucky enough to have worked long enough to qualify for them.

HIV/AIDS is getting $ 3184 million next year. Since the cause and some treatment is already known, I really think a few hundred million could be spared for ME/CFS.

$82 million for infertility...in an overpopulated world

And the list goes on and on. I only 'pick on' malaria because the funding for it is so blatently out of balance as a public health threat in the US. I think American taxpayers have a right to expect a higher priority for diseases affecting Americans than this funding imbalance provides. Anyone may disagree with me, of course. Maybe those 1300 world travelers who got malaria outside the US are more deserving of funding into their illness than the 1-4 million Americans with CFS.

But $1.25 per person vs. $89,000+?

 

[shiso]

According to the NIH website, CFS is slated to get $5 million for research in 2011...the same as this year. And the same amount the Whittemore's put up to start WPI. Pathetic.

If there are 4 million CFS sufferers, as per CDC, that's $1.25 per patient. The 1300 Americans who got malaria last year will have more than $89,000 per patient directed at their disease next year, and the cause and treatment are already known.

I may be mistaken, but I believe NIH and CDC (which are both under DHHS) each have their respective annual budgets for CFS. I think the NIH money (the $5m on that NIH chart) is available for funding research grants NIH deems worthy, and CDC has its own separate budget (which has also been around $4 or $5 million/year in recent years) for CDC scientists to run CDC's own research program. (Anyone: please correct me if I'm wrong.)

Either way, it is a pathetic amount, even assuming $10 million/year and less than 4 million patients. (Of course, it would help if the CDC could accurately diagnose the disease and we had a better idea of the true prevalence rates!)

It seems the lack of federal funding is the biggest overarching problem for the slow to non-existent rate of meaningful advances in ME/CFS research, doctor education, public awareness, access to care, access to disability benefits, etc. I'm always baffled and frustrated that CFSAC meetings and advocacy efforts revolve around how best to work within the pathetic amount (recognizing that they have to work with what they have now) -- like with the last year's evaluations of the CDC's insulting 5 year strategic plan, which seemed to assume a similar level of funding over the next 5 years (because that's the amount we're necessarily stuck with forever?? yes, if no one convinces Congress to do otherwise), instead of spending more time and resources focusing on the urgent need to exponentially increase the amount of funding.

While comparisons with other diseases may be dangerous (Pick's disease may be a good example), I think objectively uncontroversial comparisons can be made effectively to get the point across that ME/CFS is ridiculously underfunded compared to less disabling, less prevalent, less costly diseases that get hundreds of millions in federal funding each and every year, and to point to disease for which incredible progress has been made in terms of treatment (lupus, MS, HIV) with the appropriate amount of funding.

 

[Dolphin]

Regarding the "alzheimers in children" disease, that may be Pick's Disease, which I have previously mentioned here as one of only three diseases that get less funding than CFS: Pick's Disease, hay fever and vulvodynia. I have never said these illnesses do not deserve funding. I am complaining about where CFS, which is a disabling illness costing the millions of sufferers and the nation hundreds of millions of dollars, ranks in the long list of diseases being funded for research.

I didn't say it was you I was referring to. There is a small chance I am not remembering it correctly (i.e. it wasn't public) but I think on somebody's testimony to the CFSAC somebody made a comment which was cringe-worthy to me when I looked up the condition (it might have been Pick's Disease although maybe it was Niemann Pick disease or maybe I got mixed up and came across Niemann Pick disease and thought it was Pick's Disease - anyway, neither sound nice despite their name).

 

[jspotila]

I may be mistaken, but I believe NIH and CDC (which are both under DHHS) each have their respective annual budgets for CFS. I think the NIH money (the $5m on that NIH chart) is available for funding research grants NIH deems worthy, and CDC has its own separate budget (which has also been around $4 or $5 million/year in recent years) for CDC scientists to run CDC's own research program. (Anyone: please correct me if I'm wrong.)

You got it right. This is how the two agencies operate.

While comparisons with other diseases may be dangerous (Pick's disease may be a good example), I think objectively uncontroversial comparisons can be made effectively to get the point across that ME/CFS is ridiculously underfunded compared to less disabling, less prevalent, less costly diseases that get hundreds of millions in federal funding each and every year, and to point to disease for which incredible progress has been made in terms of treatment (lupus, MS, HIV) with the appropriate amount of funding.

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.

 

[Dolphin]

And the list goes on and on. I only 'pick on' malaria because the funding for it is so blatently out of balance as a public health threat in the US. I think American taxpayers have a right to expect a higher priority for diseases affecting Americans than this funding imbalance provides. Anyone may disagree with me, of course. Maybe those 1300 world travelers who got malaria outside the US are more deserving of funding into their illness than the 1-4 million Americans with CFS.

But $1.25 per person vs. $89,000+?

I think this is more a point that the amount for malaria research should be decreased. There is no way CFS or virtually any other condition could get $89,000+ per person affected.

Also, if they reduce the pot for malaria, what would usually happen would be that tax money would either be spent on other areas of expenditure (not just health research), or alternatively, the money might be spread across the whole health research budget. (or they might cut taxes as don't need the money).

 

[Kati]

If there is no new money from the government, shouldn't some money from one or many other programs be redistributed- a budget of many BILLIONS would be hardly touched if they lost a few millions. If I remember well there was 18 billions total allocated to communicable diseases, including emerging diseases, STD, AIDS, malaria, Lyme, etc.. Can XMRV gets its share please? How about the 6+ billions allocated to women's related diseases and conditions?

 

[gracenote]

I was having a discussion with Cort on one of his blog postings of The CFSAC Comittee on Itself, XMRV, the CDC and More regarging the study Dr. Hartz was able to get approval for. We not only need to be pushing for more funding, but we need to make sure the funding is being used in a way that will benefit ME/CFS patients.

Posted by Cort: Dr Hartz, a member of the CFSAC, stated that after several efforts at the CFS SEP his study went through at the Alternative Medicine Panel and that Dr. Glasers big study - which he's been trying for years to get through at the CFSAC - went through at a Cancer Panel. Dr. Hartz believes the CFS SEP panel is a drag on CFS research because it's impossible to get enough researchers that are competent in the areas under discussion. The field is simply too broad to assemble a good enough panel.

Dr. Hartzs project could have profound effects on how CFS is looked at in the medical community. He is examining treatment effectiveness rates in general practitioners, CFS specialists and alternative medicine practitioners. If he finds out that CFS specialists are more effective at treating this disease than other practitioners he can make a strong case against the CBT crowd. You can find his study here:

Cort and I disagree on this project.

Posted by gracenote: Thanks for including a link to Dr. Hartz's project. I'm not sure I agree with you that this could have "profound effects on how CFS is looked at in the medical community." He is studying Unexplained Chronic Fatigue (UCF).

Unexplained chronic fatigue (UCF) includes both chronic fatigue syndrome and idiopathic chronic fatigue.

I don't see how whatever is found in this study will shed any useful light on ME/CFS. Once again we are placed into a nonsensical cohort. It's frustrating!

See the Comments section for the rest of the discussion.

 

[oerganix]

If there is no new money from the government, shouldn't some money from one or many other programs be redistributed- a budget of many BILLIONS would be hardly touched if they lost a few millions. If I remember well there was 18 billions total allocated to communicable diseases, including emerging diseases, STD, AIDS, malaria, Lyme, etc.. Can XMRV gets its share please? How about the 6+ billions allocated to women's related diseases and conditions?

Yes, this seems like an approach that might be productive, to get some CFS research out of some of the programs that already have a pile of money, like cancer, communicable diseases (if it proves to be communicable via XMRV) and autoimmune diseases, which is very well funded. Cancer research seems to have money to burn. Another good reason for WPI to be looking into possible connections of XMRV to other illnesses...to get some funding from those better known, more 'popular' diseases.

I was looking at some of the projects that already have been funded and I saw one, under cancer research, that was studying how QiGong can be used to alleviate pain after colorectal surgery.

 

[justinreilly]

No. We will not go to the Back of the Bus Anymore.

I may be mistaken, but I believe NIH and CDC (which are both under DHHS) each have their respective annual budgets for CFS. I think the NIH money (the $5m on that NIH chart) is available for funding research grants NIH deems worthy, and CDC has its own separate budget (which has also been around $4 or $5 million/year in recent years) for CDC scientists to run CDC's own research program. (Anyone: please correct me if I'm wrong.)

Either way, it is a pathetic amount, even assuming $10 million/year and less than 4 million patients. (Of course, it would help if the CDC could accurately diagnose the disease and we had a better idea of the true prevalence rates!)

It seems the lack of federal funding is the biggest overarching problem for the slow to non-existent rate of meaningful advances in ME/CFS research, doctor education, public awareness, access to care, access to disability benefits, etc. I'm always baffled and frustrated that CFSAC meetings and advocacy efforts revolve around how best to work within the pathetic amount (recognizing that they have to work with what they have now) -- like with the last year's evaluations of the CDC's insulting 5 year strategic plan, which seemed to assume a similar level of funding over the next 5 years (because that's the amount we're necessarily stuck with forever?? yes, if no one convinces Congress to do otherwise), instead of spending more time and resources focusing on the urgent need to exponentially increase the amount of funding.

While comparisons with other diseases may be dangerous (Pick's disease may be a good example), I think objectively uncontroversial comparisons can be made effectively to get the point across that ME/CFS is ridiculously underfunded compared to less disabling, less prevalent, less costly diseases that get hundreds of millions in federal funding each and every year, and to point to disease for which incredible progress has been made in terms of treatment (lupus, MS, HIV) with the appropriate amount of funding.

I agree with Tom K that we should try to pick the diseases which will further our cases the best.

I agree with Oerganix and Shiso that comparing our funding to other diseases is proper and useful since one always needs context, especially in persuading govt decision makers. Additionally, the injustice is starkest when put in context. These other diseases must get funding, AND we also deserve funding proportional to the illness burden and societal burden this disease causes (in relation to other diseases).

The current stark disparity in funding and other mistreatment we suffer at hands of our governments are a violation of our civil rights and human rights and we must not stand for it. Let's stand up for ourselves and all those who are too sick to stand up for themselves. Standing up for ourselves can change history dramatically for the good of everyone.

One person saying "No. I will not go to the back of the bus anymore" changed history. We can do the same. I say "We will not go to the back of the bus anymore." I really hope you can all keep standing up or join in standing up for our civil rights! Silence = A Living Death.

 

[caledonia]

How about if you take the average amount per person spent on all other diseases and ask for that amount per person for CFS?

 

[KnightofZERO]

How about if you take the average amount per person spent on all other diseases and ask for that amount per person for CFS?

Yes we should do that, or "demand" it as some researchers I have heard talk about. If we only got a 100 $ per person, quite low compared to disorders such as HIV, MS etc. that would be, based on the absolute most conservative estimates about 20 million $. We need to specify that it got to research into the physiologic causes though otherwise our government could do a "UK" and spend it all on psychosocial studies.

 

[Dolphin]

How about if you take the average amount per person spent on all other diseases and ask for that amount per person for CFS?

You can try but not all the diseases have the same burden attached to them e.g. hay fever is different from Cancer. Even within Cancer, some of the skin Cancers are not as serious as other conditions.

 

[usedtobeperkytina]

Finally made it to the end of the thread. Been trying for three days. I have been on vacation, so I am not doing as much board reading as usual. Also needed to hear meeting.

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?

And, I have seen government people occupied with shiny new buildings before. Unger, happy for your building, but don't lose sight of your priorities, it's the sick people that you need to be concerned about. Never, even in one year, should a new building prevent you from serving the people.

Great you believe fatigue is not the only criteria for diagnosing this illness. But if you put emotionally unstable, people with poor memory, you are looking at a different illness. Maybe you and Dr. Jason ought to have dinner together one night.

And that brings me to another point, having just one-day meeting sure does cheat access. As many may know, much progress can be made in a hotel lounge over drinks. If the CFSAC members are there only one day, that opportunity is lost for casual conversation outside the meeting.

Dr. Jason said his subcommittee meets monthly by phone. Good for you. Now, can we get these meetings to create something tangible?

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?

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.

I understood what Jones meant by her statement when she said it.

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.)

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

 

[usedtobeperkytina]

And....

As for answers to questions. I can see no logical reason why the assistant can't give a response to all the recommendations. His response does not have to be affirmative.

Here are some options:

A. Yes, great idea, we will allocate X dollars to that immediately. It will be accomplished through the _______agency.
B. No, we don't agree. So we won't do it.
C. Good idea, but we have no funding source at this time.

This type of formal answer would be invaluable in knowing what the CFSAC should do next. It will help them to focus on the recommendations that are feasible. It will allow them to know where difference of opinions are, so they can bring in more facts to support their recommendation, to know what they need to present a case for. It also lets us know what we may need to be lobbying Congress to fund.


Now, Miss NIH lady, as to answering questions from the public. Eeek, that is uncomfortable isn't it. But, as a government employee, you are accountable to the people who pay your wages. It is very uncomfortable to be accountable to someone else, especially a fickle mass of people, even more so an angry mob.

But, in this sterile environment of committee meetings, you can say that you are not at liberty to divulge that information. Or you can say, "That pertains to research applications or unpublished study results and I can not release that information at this time." As Jones said, town hall meetings and press conferences are common. If you don't know how to say you can't answer something, then you need to go down a few notches in your position level.

Tina