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The CDC and CFS

Jan 29, 2009 - 35 comments
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CDC scandals + CFS

,

Dr. Reeves + CDC



Those of us who have Chronic Fatigue Syndrome, may have heard about scandals involving CDC funding that was allocated for this devastating illness. These scandals were reported by the Washington Post and other respected news sources around the country. CDC officials diverted research funds away from CFS research and misled Congress about the matter, according to the Inspector-General's report.

There is good news though... as a result of these scandals, the CDC did a public awareness campaign on Chronic Fatigue Syndrome and there were commercials and even ads in magazines about this disease. (it is a disease.. IMO). Also, senators such as Harry Reid were involved and these senators demanded accountability from the CDC.

Well I have some very unfortunate news to report. The CDC games have begun again (in my opinion) and our tax dollars are being wasted.

Here is a video presentation from Dr. James Jones from the CDC. This presentation was given to OB/GYN physicians because they wanted information on CFS. I couldn't believe what I saw after I watched this video ! In my opinion, this CDC physician did a below average job. No where does he mention that many fibro and CFS patients have fibroids, low vitamin D levels, osteopenia and abnormal hormone levels. I am embarrassed by this.  And this is probably the reason why my CFS patients are still getting smiles from physicians and medical staff after we tell them our diagnosis.

http://streaming.biocom.arizona.edu/event/?id=20487

And now there are other new problems with the CDC.  This is our tax dollars being wasted... in my opinion. If you would like to read more about this, check out Cort Johnson's website. And thank you, Cort, for allowing me to post this and reporting this injustice:


"Welcome to the Dec edition of Phoenix Rising.  Here we're caught up again in one of the most intriguing and possibly consequential stories in memory: the CFID's Association of America's accusations that the CDC  has essentially been squandering money - lots of money - on dead end projects on CFS. Now with the full minutes of the federal advisory meeting on CFS present we dive deeper into the controversy and take a quick look at the ups and downs of Dr. Reeves tenure and ask what happens if he does leave.


As all this was unfolding a group of ME/CFS experts was doing the first external review of the CDC program in ten years and we take a critical look at the report they issued during this rather turbulent period."

The latest info on the latest CDC games with CFS funding:

http://phoenix-cfs.org/Dec08CDC.html


I suspect that politics play a huge role in these illnesses.  Remember Gulf War Syndrome ? It was real... then it wasn't.... and then it was and then it wasn't again. And now, it is real again. But what makes me scratch my head is that the military knew how to treat GWS all along.  ; ^ )    

As far as new illnesses and people questioning these "controversial" illnesses, keep in mind that a polio and MS diagnosis used to be controversial. If you are concerned about this, please consider contacting your local senators and demand justice for people like me. I just want my tax dollars not to be wasted. I want answers and I want the best treatment available. I'm tired of the special interest groups involved (oh and they are... I've been reading about that one too!) and the CDC WASTING OUR money again. It's time to hold this agency accountable again... no matter how many times it takes.

How to contact your senators:

http://www.congress.org/congressorg/home/


And one last thing... thank God that a new blood test that can diagnose CFS is on the horizon ! To all of those who didn't believe CFS was real.... remember not to do this in the future when other new illnesses emerge. If bird flu, SARS and West Nile Virus didn't kill their victims... then we probably would have questioned whether or not these people were ill as well. Stop the judging and do your research !





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585414 tn?1288944902
by ILADVOCATE, Jan 29, 2009
Yes we do need some legislative reform that will address this. I don't see how any disability or disease should be considered "controversial". I remember the West Nile Virus when it emerged in N.Y.C. and I realized something was wrong as regarding the amount of dead crows and the media said they had "eaten contaminated soil" which I knew was wrong. I reported it to the health department. The idea that CFS and fibromyalgia in being "controversial" are outside of medical practice because the various insurance providers didn't want to cover people with these conditions. They were hard to clinically define but clearly exist.
  I think that's excellent that there is a blood test in study that will be able to diagnose CFS. I do think its warranted for us to write our representatives. I am in a somewhat similar circumstance. I am the first person to be under clinical study for the criteria "tardive psychosis". It is considered controversial but my advocacy is to take the controversy out of it, have it named as a criteria and identify treatments for it and advocate for medications to be realized that won't cause any variant of tardive dyskinesia and as happens I've made a full recovery with glycine which is a glutamate antagonist, a new form of antipsychotic in Phase II FDA study that won't cause tardive dyskinesia or diabetes and promotes a fuller recovery. So I'd say in both cases more funding should be put into research. And for yourself you might wish to conduct some testimony as I did but I only found support along the way. Hope it would be the same for you. Good luck...

Avatar universal
by patsy10, Jan 29, 2009
I did not hear about the scandals going on regarding CFS but I believe it.   I think it's all about money.  All the conditions that are ambiguous....CFS,Lyme FMS and others are expensive in terms of treatment and the cost of disability.  It's easier to ignore them than pay for research, treatment etc....I think it's going to take a long time for things to change.  Especially with the state our economy is in right now.  The one thing that might change things is when the blood test comes out.  Once it is definitive then it cannot be ignored.

689567 tn?1320887613
by bjsmit1, Jan 29, 2009
I will add more later when I have time; in the meantime, please read the following -- it is testimony to the CFSAC in October 2008 that illustrates the mismanagement of millions of dollars, the lack of transparency, and government bureaucracy at its worst.  The testimony is that of Kim McCleary, President/CEO of The CFIDS Association of America.  The following is the url:

http://www.cfids.org/advocacy/testimony-mccleary-oct2008.pdf

Ten years ago when the original misappropriation of almost $13 million in funds allocated for CFS research occured, it lead to an audit by the GAO, followed by a "payback" period from 2000 - 2005.  Ten years ago, William Reeves assumed the role of the "whistleblower", and was heralded for speaking out.  I am quite skeptical of this version of events, especially given Reeves' attitude, and complete mismanagement of the CFS program at the CDC.

Think of his "whistleblower" status like this -- when Congress is auditing the government agency that one works for, and that person holds a decision making position with a lot of authority, one might be inclined to throw everyone else under the bus in an effort to save himself, and be heralded as the altruistic "whistleblower"...

Furthermore, at the CFSAC meeting in May 2008, Dr. Bill Reeves of the CDC reported on the prevalence figures of CFS, as well as other CDC related material. He repeatedly referred to the CFS patient population as a "body count".

To this, CFSAC Chairman, Dr. James Oleske stated:

"I have one request -- please let's not use that term 'body count.' I think that it's offensive. It's patients, it's people who are ill, it's the ones we have to serve and care for. My son was in Iraq and I know what a body count is, and I don't want to hear it about patients who we're taking care of."

This occured during the morning session of the first day of meetings on May 5, 2008. Dr. Reeves left shortly after lunch on May 5th, before any of the public testimony. In addition, he did not show up at all on the second day of the meetings on May 6, 2008.

Like I said, I'll add more later.  And I do not speak for anyone but myself.


Brian Smith
CFIDS Association of America
Board of Directors

Avatar universal
by PlateletGal, Jan 30, 2009
"The idea that CFS and fibromyalgia in being "controversial" are outside of medical practice because the various insurance providers didn't want to cover people with these conditions."

ILADVOCATE,

Well said. I know my journal brought up two separate issues: CDC bearaucracy & tax dollars being wasted as a result and CFS and these other "controversial" illnesses, which should not be controversial anymore. The two issues are somewhat tied together because IMO, if the CDC did their job... there would be no question as to whether or not CFS was a real illness. But the fact is, there is still much ignorance in the medical field on this very real disease.

Hi Brian,

Thank you for being here and keeping us updated on this latest scandal (IMO). It only takes seconds (just like writing a post in the forums) to write a letter to your senators and let them know you want this investigated. I also believe that Dr. Reeves should be held accountable. This is yet another huge embarrassment on the CDC's part.








,

689567 tn?1320887613
by bjsmit1, Jan 30, 2009
Possibly more embarrassing for the CDC is the fact that they will not let William Reeves participate in any CFSAC meetings since his antics on May 5, 2008.  Maybe even more embarrassing is the 45+ minutes of video I captured from the October CFSAC meeting which I have yet to post...), where the CDC was exposed, and Kim McCleary testified about the latest "scandal" regarding the utter mismanagement of millions of dollars within the CDC's CFS research program.

Again, I speak for myself, and will add more later.

Brian Smith

523927 tn?1257022304
by ott70, Jan 30, 2009
I'm curious as to how the CFS blood test is going to work, but hopefully it does. It seems to me we already have some blood tests that can work in testing for mycoplasmas, viruses, and bacteria. However, we need standard labs used by insurance to upgrade their tests, such as Labcorp and Quest. There are specialized labs out there like Igenex and Red Labs to can sensitively test for these type of pathogens and it would be nice if that technology and knowledge became more recognized and affordable. Those of us that are chronically ill could use a better diagnosis of what ails us.

It's disturbing that there is so much research and written proof on CFS and related conditions from brilliant doctors and microbiologists, that you still have these powerful medical sects that try to debunk the whole thing.

If Dr. James Oleske's son was in Iraq, then shouldn't he know all about GWS? CFS doesn't seem too far off of what GWS is.

689567 tn?1320887613
by bjsmit1, Jan 30, 2009
Just for clarification, from all accounts, Dr. James Oleske has been a tremendous asset to the CFS patient community, and is a very compassionate physician with regard to CFS diagnosis, treatment, etc.  The comment he made in response to William Reeves' constant use of the term "body count" was done so to show empathy for the CFS community.  From everything I've seen and heard of Dr. Oleske, he is on "our side".  Just my 2 cents...

523927 tn?1257022304
by ott70, Jan 31, 2009
Sorry, my misinterpretation.

Avatar universal
by PlateletGal, Jan 31, 2009
Hi ott,

Here is the link to the news video with information on this new blood test that apparently can diagnose CFS:

http://www.youtube.com/watch?v=nfLoiqf6I4o


Avatar universal
by ginak, Jan 31, 2009
It is really sad that diseases such as lyme, fibro, cfids, ME, and other auto immune diseases have to be so political. It is a shame that our government will waste time and energy in trying to prove how a disease doesn't exist instead of investing resources and energy into finding out the real causes of such illnesses. Its another form of genocide on its own people. As a sufferer, almost every time I go to a physician's office, I am asked if I am applying for disability. The answer to that is no and I am simply trying to get better so that I can continue to be a functional and contributing citizen of the United States of America! Thanks to those physicians who are advocates for patients like myself and others. Its too bad that many within the medical community have written patients like myself off as being hypochondriacs or simple disability seekers.

Avatar universal
by Padro46, Feb 03, 2009
If only the Medical Profession in a whole would remember why they were getting into the field to begin with,  Was it not to "Help cure the Patient"  Now I know why so many people just give up, They get tired of being passed around and told go see this pweson and take this pill with no real answer.

525545 tn?1293184794
by SharJ, Mar 27, 2009
I have Fibro./CFS for over 25 years. all I want is something to make both to ease off. I have been so tired I just sit down and fall asleep. I could be on the computer or eating, watching TV and I am sound asleep.  I have been doing this for the  past 3 weeks.  I am going to  bed. I hope they will come up something to help  us soon.

Avatar universal
by junglejim46, Apr 09, 2009
Thank you all for keeping up with the 'underside" of govt. and what they are really doing with our much needed research funds.
I am truly sorry if my voice of opinion may offend someone. With the goings on of the "new" govt. and their free will of spending, what can you expect with throwing money away and around.
junglejim46

Avatar universal
by PlateletGal, Apr 20, 2009
Please read Cort Johnson's blog entry on the CDC and CFS research. (link below)  I agree with Cort and I feel that millions of our tax dollars have been wasted. This is such a tragedy and in order for us to fix any tragedy, we need to recognize it and then address it.

Also, you have a chance to tell the CDC what you think of their research program. For more information, visit Cort's website at:
http://aboutmecfs.org/blog/

Avatar universal
by quaymanno2, Apr 29, 2009
There was a meeting on the CDC's draft research plan for CFS on April 27.

Rich Van Konynenburg wrote a summary of this meeting which can be read at:
http://tinyurl.com/richcdc
i.e.
http://www.prohealth.com/me-cfs/blog/boardDetail.cfm?id=1346564
or
informal summary

Other information is also at this link.

Avatar universal
by PlateletGal, May 06, 2009
Testimonies & Takes on the April 27 CDC Research Stakeholder's Meeting - and What Lies Ahead

http://www.prohealth.com/ME-CFS/library/showArticle.cfm?libid=14528&B1=EM050609C

Avatar universal
by PlateletGal, May 06, 2009
"Dr. William Reeves, who heads the program, emphasized that the CDC was moving toward prevention"

Personally, I agree with many other CFS patients and advocates. They need to fire Dr. William Reeves. I believe that he is wasting our tax dollars.


Avatar universal
by PlateletGal, May 07, 2009

Kim McCleary, the President and CEO of the CFIDS Association of America went public with her concerns about the CDC:


http://www.cfids.org/advocacy/testimony-mccleary-oct2008.pdf



Avatar universal
by VaBreeze, May 07, 2009
Reeves continued: “We are the Centers for Disease Control and Prevention. We are not the NIH. We are not the FDA… Our goal is to conduct a public health research program that will lead to the control and prevention of CFS.”

Well, at least he is aware of what they ARE NOT.  That much is clear, but it is going to be difficult to implement a program to control or prevent CFS until they can locate the exact cause.  From Dr. Reeves comments it would appear that they know what this is...how else can one construct a program for prevention and control?

I can't wait to see how this plays out.  Yes...he is wasting money and time.


Avatar universal
by VaBreeze, May 07, 2009
CDC = Center for Denial Consultants !

Avatar universal
by SHARONANN124, Oct 14, 2009
Dr. William Reeves of the United States CDC/CFS program MUST be removed and replaced with someone acceptable to the CFIDS community NOW. The latest study on XMRV, the fourth human retrovirus recently discovered, provides further evidence that CFIDS is in fact a "real disease" and not a psychocrap illness that Reeves, his CDC associates, and his contractors can not refute. Reeves and his associates should be prosecuted by the law and put in jail for their deliberate destructive activities during Reeves time as the head of the CDC/CFS program. Investigations have been under way by the Inspector Generals of the CDC, NIH and DHHS. We have also requested that Reeves and the CDC be investigated, yet again, for possible funding issues with the CDC/CFS contractors (Emory University Mind-Body Program and ABT Associates). We do expect that Congressional action will begin soon.
Reeves and his CDC associates MUST BE REMOVED NOW. Enough is enough. The damage that this greedy, stupid man has done to millions of sick people is beyond criminal. Reeves is directly responsible for thousands of deaths to heart disease, the cancers that are seen in high proportions in the CFIDS population, and the suicides of those that could no longer "live" a life of pain and despair. Those that took their own life were not weak or mentally ill. Instead, they were so sick and with no where to turn and no one to believe them or help them saw no choice but to end their own suffering. Thousands of deaths sit on the head of Dr. William Reeves.
If you have any extra money, please go to the Whittemore Peterson Institute website at wpinstitute.org and donate what you can so that REAL and effective research into CFIDS can continue. We can NOT depend on the CDC as they have done nothing but demean and damage the CFID sick over the last three decades. The CDC/CFS/Reeves have wasted millions of dollars and two generations of lives while the Whittemore-Peterson Institute has made massive progress in just two short years and with about one million dollars in funding. It is going to be outside research that provides the cure for CFIDS, NOT the CDC. Please donate to this wonderful research institute - one that was in fact started by a Mother because her daughter was so ill with CFIDS. When a Mother is involved in the health of her child (and other "children") you KNOW it will succeed - and the WPI HAS indeed succeeded brilliantly.
See Hillary Johnson's website on CFIDS and the damage done by the CDC from the very first outbreak in Incline Village, Nevada more than two decades ago. Yes, those people are still very sick and permanently disabled - many are dead from the cancers most commonly found with CFIDS sick. oslersweb.com

You will also read that this virus may have been discovered by a female reseacher at the CDC around 1991. The CDC did nothing with this research and her career was damaged. HAD the CDC bothered to look into her work back in 1991, millions of people, both here in the US and worldwide, would NOT be so sick, disabled, and in too many cases - dead from those cancers associated with this new virus. Recognize that this virus is believed to be contagious and that means that anyone - everyone is a possible target for this disease. I have lived with CFIDS for 15 years and my life has been pretty miserable. I truly wish I had died 15 years ago from a quick, deadly heart attack rather than have had to live in this miserable CFIDS sick body. Says something doesn't it?

Avatar universal
by SHARONANN124, Oct 14, 2009
"Dr. William Reeves, who heads the program, emphasized that the CDC was moving toward prevention"

HOW CAN YOU MOVE TOWARDS PREVENTION WHEN YOU DON'T KNOW THE CAUSE?
REEVES IS AN IDIOT WHO IS FEATHERING HIS NEST WITH HIS CONTRACTORS AND CALLING CFIDS A PSYCHIATRIC ILLNESS AND NOT A REAL, PHYSICAL ONE. GUESS HE'S GOT **** SOUP ON HIS FACE NOW WITH THIS NEW VIRUS STUDY OUT IN THE PUBLIC ARENA. HOPE THAT **** SOUP TASTES YUMMY BILL!!!

Avatar universal
by muffinann, Oct 17, 2009
BRIAN SMITH SAID: "Ten years ago when the original misappropriation of almost $13 million in funds allocated for CFS research occured, it lead to an audit by the GAO, followed by a "payback" period from 2000 - 2005. Ten years ago, William Reeves assumed the role of the "whistleblower", and was heralded for speaking out. I am quite skeptical of this version of events, especially given Reeves' attitude, and complete mismanagement of the CFS program at the CDC.

Think of his "whistleblower" status like this -- when Congress is auditing the government agency that one works for, and that person holds a decision making position with a lot of authority, one might be inclined to throw everyone else under the bus in an effort to save himself, and be heralded as the altruistic "whistleblower"... "

MY COMMENT:  I TOO believe that Reeves used the Whistleblower act to cover his own butt and to get ahead. He HATES CFIDS research so he goes off on his own and does the psychobabble stuff that has little to do with CFIDS but does cross the whole spectrum of diseases. Stress does do damage to a body and the same stress-induced actioins do cause or help along any disease, not just CFIDS. Weakened immune system and the rest of the cascading affects from stress. So, there was NO altruism with Reeves, just butt-covering and pulling ahead in his career. Herald the man? I would love to see him prosecuted and placed in prison for the rest of his life and so would millions of others suffering from CFIDS.

Let us wait and see what happens to Reeves. HHS has recommended new management at the CDC. Congress will be looking at this whole thing once again and also at the CDC and its own ongoing waste of taxpayer money.

Brian Smith: You hit it on the head hard. Kudos.

Avatar universal
by muffinann, Oct 17, 2009
WEBSITE LOCATION FOR STUDY DONE BY DR. ELAINE DEFREITAS IN 1990 - THIS MAY HAVE BEEN THE "NEW" VIRUS DISCOVERED BY THE SMART FOLKS AT WHITTEMORE-PETERSON INSTITUTE.


http://www.pnas.org/content/88/7/2922.full.pdf  

(Retroviral sequences related to human T-lymphotropic virus type II
in patients with chronic fatigue immune dysfunction syndrome
(Epstein-Barr virus syndrome/infectious mononucleosis/myalgic encephalomyelitis/polymerase chain reaction/in situ hybridization)
ELAINE DEFREITAS*, BRENDAN HILLIARD, PAUL R. CHENEYt, DAVID S. BELLS, EDWARD KIGGUNDU,
DIANE SANKEY, ZOFIA WROBLEWSKA, MARIA PALLADINO, JOHN P. WOODWARD§, AND HILARY KOPROWSKI
The Wistar Institute, 3601 Spruce Street, Philadelphia, PA 19104
Contributed by Hilary Koprowski, November 13, 1990


Avatar universal
by muffinann, Oct 17, 2009
GUYS: It really is waaay past time to force the removal of William Reeves from his post at the CDC/CFS program. We all need to hit the media, online sites/blogs, email/call our Congresspeople, email the DHHS and CDC, and also request investigations into Reeves and his contractor "relations" by the General Accounting Office (GAO) (go to their site and make your request).
NOW is the time to push this guy out of the CDC and replace him with someone with brains who truly believes and understands CFIDS. That person must understand that they MUST work with other researchers, physicians, and advocacy groups (for more funding for CFIDS). The new person must also work hand-in-hand with researchers at the Whittemore-Peterson Institute and Dr. Paul Cheney. THESE people are the renegades pushing the medical community out of its stupidity and stupor and into looking for real causes and cures for CFIDS/FM.

What Reeves has done to CFIDS is more than disgraceful, it is downright criminal. And I do believe he needs to be prosecuted for a number of "crimes" regarding CFIDS research and mismanagement.

SPEAK UP AND EMAIL CONGRESS, THE GAO, THE CDC HEAD, THE HHS HEAD AND EVERYONE THAT HAS ANY AUTHORITY OVER THE CDC AND REEVES IN PARTICULAR. DO IT NOW!
It is easy for us to cry and complain to eachother but that gets nothing accomplished. So, open your mouths to the RIGHT people and complain, complain, complain until Reeves and his associates and contractors are removed.

I also suggest that if you have any extra money (I know, my finances are shot due to CFIDS), donate to the Whittemore-Peterson Institute at www.wpinstitute.org . ANY amount of money will help. These people seem to do far more research with far less money than the CDC has done in nearly three decades with millions and millions wasted and not a single real thing to show for all of that time/money. So, if you really want a cure, send that $5.00 to them. Every little bit helps and gets us closer to getting better and living a real life. I've been sick for more than 15 years and I want so desperatly to be normal. I know you all do to. Just normal. No more pain, non-stop sleeping, inability to think, remember, function, move. No more stupid doctors who insult us and offer nothing up except the "I don't knows" or the "It's in your head, you need a shrink". Had enough of all that.

LAST TIME: Speak UP to the right people in Washington DC AND give whatever you can to the Whittemore-Peterson Institute.
Please!!!!   This virus is contagious and Reeves KNEW that CFIDS was indeed contagious and that we sick should NOT give blood. He KNEW this years ago and yet our contaminated blood is now into the nation's blood supply. Great! We can spread the happy with our blood to other innocents, including children. Our close contacts (family, friends) are also sitting targets for this virus since we do cough, sneeze and share food, drink and plate/utensils. It need not be sex, just close physical contact like sharing a soda with your kid. Now THAT is CRIMINAL.

Avatar universal
by muffinann, Oct 17, 2009
http://aboutmecfs.org/Conf/IACFSME09WPI.aspx

The IACFS/ME Conference II: the Hit of the Conference
The Whittemore-Peterson Neuro-Immune Institute
Reno, Nevada: March 12-16, 2009   http://aboutmecfs.org/Conf/IACFSME09WPI.aspx

By Cort Johnson  (The WONDERFUL Cort Johnson!)))) Hope Cort doesn't mind me posting his great work here. Hit his website for really good and up to date info. Cort hits hard and fast. Bravo to HIM.
__________________________________________________________________  
"You just keep showing these guys compelling data. We have a piece of data that would just knock your socks off but I’m not showing it. “ Dr. Judy Mikovits
The Whittemore-Peterson Neuro-immune Institute was the hit of the conference. They appear to have more further quickly than any ME/CFS research effort has to date. One reason has been their decision to focus one subset. Dr. Peterson has conjectured that this subset - often referred to as the Incline Village Cohort - makes up somewhere around 20-30% of the chronic fatigue syndrome (ME/CFS) population. This group typically has abnormal RNase L readings, poor NK cell functioning, increased pathogen loads and an acute infectious onset. Many are in the original Incline Village Cohort that thrust this disease into the media spotlight almost 25 years ago.
Documenting A Unique Circle of Dysfunction

The WPI’s first goal was to tease this group out from the mass of ME/CFS patients - to establish, contrary to most researchers and physicians beliefs - that there is a unique acute onset ‘viral’ group of patients. Amazingly they appear to have been able to do that.

The reason they were able to do this is that some of these patients appear to be reaping the rewards of government inattention - they’re dying of cancer. The federal government doesn’t care if patients linger in a disabled state for decades, straining (breaking) the social safety net, costing themselves, their families and society enormous amounts of emotional and financial distress. That apparently doesn’t interest the federal government in the slightest. But if you have cancer, even if only a very few patients have cancer - that will get the feds attention.

Dr. Peterson’s finding that a few of his patients were coming down with very rare cancers got one researchers attention. Once she got interested other researchers became interested and it wasn’t long before tests on samples from dozens of ME/CFS patients were undergoing state of the art testing at the National Cancer Institute. The cancer was the ME/CFS community’s ‘in’.
Once the WPI got their toe in the door they got to work showing that, cancer or not, that this crazy disease was real. If they can do that with this subset then maybe they can open the door wide enough to squeeze the rest of us in. The first step, though, was establishing that for some patients their reward for 25 years of battling this mysterious disease was coming down with cancer - a bitter, bitter reward indeed.

Unsettling Associations: The Incline Village Cancer Cluster

Of all the problems associated with ME/CFS one would have hoped that the ‘Big C’ wouldn’t be one of them. But the evidence presented at the conference suggests that at least with this particular cohort of patient it’s a very real problem.

Dr. Peterson got Dr. Mikovits, a cancer researcher, interested when he mentioned at a conference in Spain that he had nine patients with Non-Hodgkins Lymphoma (NHL). NHL strikes about 2 out of every 10,000 people in the US (0.02%) but a full 5% of Dr. Peterson’s Nevada cohort had developed it. Even more striking was the type of specific of type of lymphoma he was finding.
Mantle Cell Lymphoma is a form of non-Hodgkins Lymphoma (NHL) that is almost vanishingly rare. If my back of the envelope statistics are correct MCL strikes about 1 out of every 100,000 people …but thirty percent of Dr. Peterson’s ME/CFS cancer patients had it. That’s the kind of finding that will turn a cancer researchers head and it got Dr. Mikovits, a viral cancer researcher associated with the HHV-6 Foundation’s attention. She told me she knew right away that ‘that’s a virus’. She was soon off for the summer to Reno to look more closely at this cohort.

Dr. Gagen, a biostatician was engaged to take closer look at this cohort. Was it real? Her presentation was fascinating. She began to work her way down her slides of the region. Yes there was a large cluster of cancer cases in the general area. But where exactly was it? She ticked down several slides narrowing the focus – and then there it was - one brightly highlighted section almost pulsing out at you – Incline Village. It was an eerie moment. Even she said she was surprised to see that location pop out so vividly.

(Most people in Dr. Peterson’s cohort do not have cancer but enough of them do have these rare cancers to make the group stand out. Dr. Peterson pointed out two patients in an early North Carolina cohort with this type of cancer but what about other physician’s patients? If they’re there we haven’t heard of them. At a recent seminar Dr. Peterson recommended that physicians with long-term patients screen them for cancer.)

The cancer subset was real. Now the search was on to find its cause. Dr. Mikovits, our connection to the National Cancer Institute, felt it had to be a virus. But which one? The WPI set out to find out. But first a little about the lead researcher at the WPI.

They’re BAAACK
Identification of Differentially Expressed Viruses in American CFS Patients Probed with a Custom Mammalian Virus Microarray. Judy Mikovits, V. Lombardi, Y. Huang, D. Peterson and F. Ruscetti

Dr. Mikovits, the head researcher at the WPI brings not just a steel-sharp mind that was honed in the rigorous environment of the National Cancer Institute but all the connections she’s developed over the years.

The two most prominent positions on a citation are the first (the researcher who did all the work) and the last (the senior researcher backing up the effort). Take a look at the senior (last) author of the paper, Frank Ruscetti. Frank Ruscetti is the head of the white blood cell biology section of the National Cancer Institute at the NIH - a big wheel who discovered the interleukin 2 cytokine and was prominent in AIDS research. Researchers look a bit more closely at a paper when the senior author is the head of a lab at the National Cancer Institute. It’s probably safe to say that no researcher of his stature had co-authored a paper on ME/CFS before.

Interlude: I got to talk to Dr. Mikovits at the conference. ME/CFS has had trouble attracting new researchers to the field so the first thing I asked her was how she got started in all this?
I was consulting with Kristin Loomis of the HHV-6 Foundation at the time (summer of 2006). At the last talk of the (HHV-6) conference (in Spain) Dr Dan Peterson described the cancer group he’d found and specifically the molecular defect in the immune system – something called a clonal receptor re-arrangement which you don’t see unless you have a persistent unresolved infection or lymphoma . At the end of the talk he said “Well I don’t what to make of this and we have like 10 of these patients “.
I think an immunologist stood up and said “Oh, all old people get that” but I was thinking that the problem is that these people aren’t old. These people were getting a very rare lymphoma and they were getting it before anyone gets lymphoma and to me that says virus.
My background is in virus caused cancers. My training for over 22 years at the National Cancer Institute was in how viruses dysregulate the immune response to cause disease – cancer. So when he said come meet with me after the talk and I beat up to the front of the room because it was the only interesting thing I’d heard during the entire meeting (laughing) and I said “There’s something there – that’s a smoking gun” so I gave him my card, told him I’m interested, told him what I thought was going on and he and Annette Whittemore invited me out to Reno. Within two weeks of that meeting they talked about setting up a summer research program….

Dr. Mikovits brought more than connections - she also brought technology. The pathogen microarray she used comes straight from the National Cancer Institute. It’s the most definitive pathogen microarray in the world. (Microarray’s search for bits of RNA and DNA unique to a pathogen. If they find these unique sequences they’re confident that the actual pathogen is present.) This one looked for evidence of all known mammalian viruses.
“When you see 8-10 cases of mantle cell lymphoma in Northern Nevada and California - that’s a pathogen. So we said first off we’re going to do a viral microarray to look for it. That chip (viral microarray) holds multiple (aspects) of every known mammalian viruses. So there’s not one (aspect) of of EBV we’re looking at there’s 60 or 70 – so you can look at multiple parts of the virus.” Dr. Mikovits
What popped out in them? Our old ‘favorite’ the herpes viruses. What popped out in the healthy controls? Their old favorite – common cold viruses (rhinoviruses/adenoviruses). Which herpes viruses? HHV5, 7, cytomegalovirus, HHV-6. Cytomegalovirus was the most active virus found. Human endogenous retroviruses – a subject of the Symposium on Viruses in CFS - were also found. So were enteroviruses. Dr. Mikovits said the levels of viral expression they found were ‘incredible’.
“The average chronic fatigue syndrome patient on the day they were tested had between 30-50 viruses; the average control had 3 or 4” Dr. Daniel Peterson, 2008 Swedish Conference
Not only that but they found that these patients had a distinctive viral signature; in fact it’s distinctive enough that the WPI believes it’s a diagnostic for them i.e. it’s a biomarker for this group. It’s essentially a series of tests that can (and is) being put on a chip that physicians can easily run to determine if the fatigued patient before them fits this profile. What is ‘it’ identifying? It’s identifying the viral subset in ME/CFS. If the WPI is successful at doing this they’ll cut a significant group of patients free from the chronic fatigue syndrome label.

Dig Deeper! Dr. Peterson's 2008 Presentation in Sweden

(But what to call this new disease? ‘Peterson’s Disease’? Incline Village Immune Dysfunction (IVID?) How about myalgic encephalomyelitis - this is, after all the viral group. Annette Whittemore has said she’d be fine with that. Whatever it turns out to be somehow one has the feeling it won’t have the word fatigue in it.)

If it all works out it’ll be a defining moment in the history of this disease. A lot changes when you isolate out a subset. For one thing you finally have a distinct research focus. Since you don’t have all these other types of patients that were bollixing up your data you should start getting more consistent study results –which is exactly what happened here. Plus once you separate out this group it should get easier to find the subsets in the rest of the ME/CFS population because once you’ve removed this group it’s not obscuring the view for the rest of us.

The ME/CFS community can’t really begin cheering until studies replicate this subset in other patient groups and until doctors are using this new test or (‘chip’) and reporting success with it. We should know pretty soon – the chip is reportedly done, licensing and patenting are apparently just about done – this thing is moving along fast. If it works out it’ll be the biggest development in ME/CFS since…..well, since Incline Village hit the news 25 years ago. Uncovering documentable subgroups has been on the top of researchers lists almost from day one.

They demonstrated the cancer cluster is real. Now, apropos to Dr. Mikovits remarks (‘that’s a virus’) they found evidence of viruses. If a virus (or more likely a group of viruses) is the problem then that should be reflected in the immune system finding. The WPI’s next task was to look and see if these patient’s immune systems looked like they had viral induced immune dysfunction and cancer.

Next Step: Finding the Right Immune Signature

Serum Cytokine and Chemokine Profiles of Individuals with ME/CFS Distinguish Unique Subgroups Among Patient Populations. Vincent Lombardi, D. Redelman, D. White, M. Fremont, K. DeMeirleir, D. Peterson, J. Mikovits

WPI researchers ploughed into the immune systems of these patients with the most sophisticated testing of ME/CFS patients done to date. Cytokine tests in ME/CFS have had mixed results in the past but they weren’t using the technology that the WPI is using. Nor did they focus on one subset of patients. Doing so turned out to make all the difference.
“We did the cytokine signature and it exactly matches the viruses we found” Dr. Judy Mikovits
Targeting the Vulnerability. These patients appear to have an increased risk of cancer, increased pathogen levels and altered immune functioning – they’re a mess! So the next question was to try and figure out how these patients got into this fix. Was there something in their genetic makeup that made them vulnerable to these kinds of viruses?

Since the T-cell rearrangements appear to play a key role in this group they zeroed in on the genes that control how T-cells- the heavy hitters of the adaptive immune response - function. Specifically they looked at the antigen presenting region on the T-cells. This is the part of the T-cell which holds foreign proteins that the T-cell checks out to see if it’s found a pathogen. If it has then it mounts a ‘clonal response’; that is, it builds hordes of T-cells that have been specifically designed to kill that pathogen or cancerous cell.

Given this the researchers were very interested to see if that antigen presenting portion of the T-cell were working correctly. If the T-cell didn’t present those viral bits of matter or ‘antigens’ in the right way or it the cells wasn’t able to read those antigens correctly then our ‘killer cells’ – our T and Natural Killer cells - would either not mount a response or would not mount the right response. They found these patients indeed had an unusual type of ‘clonal T-cell arrangement’ which was typically associated with either an ongoing viral attack or cancer - the immune system reading fit their viral results.

With the immune readings lining up they then took a deeper look at the immune system. Why were these viruses getting past these patients immune defenses? Here they focused not on the T-cells but at a far earlier stage in the immune response where the T-cells close cousins - the natural killer cells - called the shots.


A New Kind of Immune Disease

ME/CFS patients have been unlucky in several ways; the name, the vague definitions, etc. but they’ve also simply been unlucky in what kind of immune dysfunction they have. More and more natural killer cells are being implicated in this disease - and that’s been a problem. />
“The most common immunological dysfunction found in these around the world is low natural killer cell function….and that’s been true of every study that’s been done around the world….I think it’s a real key to what’s happening in these patients’ Dr. Daniel Peterson, 2008 Swedish Conference
But neither they nor the type of immune response NK cells participate in, the innate immune response, has gotten the attention of research community until recently. Immunologist’s attention has been mostly focused on the adaptive immune response - that immense deployment of forces the immune system musters to kill pathogens. But what if the innate immune response - which is constantly trolling the system looking for pathogens - never identifies that pathogen? Researchers have just recently started really looking at the innate immune response, which means that most doctors know little to nothing about it and that, of course, is another problem.
“We did a little study of physicians in Reno and found that only three percent knew what an NK cell or a dendritic cell was” Dr. Dan Peterson, 2008 Swedish Conference
That’s one reason the WPI recognizes the need for a ‘translational’ educational approach as well. If physicians are going to get it about this group of patients they’re going to need to get some basic science education. If one can be mustered it could be well worth the effort.

The WPI found that this subset of patients had an increased risk of having a kind of gene called HLA-B*44 which researchers suspect may be associated with the increased incidence of several cancers. They also found that HLA B4 genes associated with what are called ‘KIR receptors ‘ were also prominent in this group.
“KIR’s were just recently discovered – I’d say not even a decade ago. My colleagues at the National Cancer Institute identified them as killer immunoglobulatory domains. I think of them as killer inhibitory domains because when you have a KIR... the NK cells won’t kill.” Dr. Mikovits- IACFS/ME Conference
KIR receptors help direct T and NK cells to the pathogens and then as the pathogen or tumor cell is taken care of they help turn the attack off. The KIR receptor problem suggests that the NK and T cells in these patients may be firing indiscriminately; that they’ve been turned on by the pathogen but since they’re not being properly directed they’re simply firing blindly. Not only are they missing their target - allowing the pathogen to flourish - but they’re depleting themselves of ammunition. This fits in with what the Miami Fletcher/Klimas group has found; NK cells that are firing blanks because they’ve apparently run out of ammunition.

This scenario is not simply the result of a genetic defect. It’s more insidious than that the viruses themselves appear to be able to influence the genes in question. Once that door to the immune system opens the viruses are able to kick it open further. That, however, brings hope that once the viruses are removed the system may be able to function more normally.
“The particular genes we’re looking at are also changed by viruses by viruses and pathogens. Viruses and pathogens are very smart and they (can actually) change the immune response...these genes are literally being changed or modulated by the virus”
Now the WPI had established that a cancer subset was present, they’d identified an immune subset with high viral loads and they’d identified a hole in the immune system that could contribute to the viral invasion but what about treatment?

The Closer You Look the More You Find - A Translational Treatment Program

There are at least several intriguing treatment possibilities that have come out of this. The first simply involves getting the right tests done. If you uncover a virus then some patients respond very well to the appropriate antiviral treatment. Few doctors, however, are willing to do the appropriate tests (spinal fluid and others) for ME/CFS patients. At the Swedish Conference Dr. Peterson recounted one case
“I have a patient who had mesial-temporal sclerosis….he was in a nursing home because he couldn’t care for himself, he couldn’t write his name, he couldn’t talk. His spinal fluid was positive for HHV-6A. I treated him for a year with Vistide and now he’s working as a carpenter.“
Other patients - even if they have a defined virus are not so lucky. Either the antiviral drugs don’t work or they work only temporarily or they’re helpful rather than curative. Or it could be that proper combination of treatments has not been used. In Annette Whittemore’s May, 2009 presentation at the Northern Nevada FM/CFS Network she noted that properly treating ME/CFS is not easy and include a variety of treatments including
antivirals to suppress the pathogen
immunomodulators to assist immune functioning
hormones to address hormonal imbalances and
nutritional supplements to address other deficiencies

The new paradigm includes using sophisticated computer programs to churn through reams of data to uncover individualized abnormalities and match them up with the right treatments. This is what, if I have this right, the WPI calls ‘translational medicine’.
“We’re not used to thinking of genomics and databases and biotechnology…in fact we’ve been overlooking these very powerful tools… but by utilizing these tools you can get much quicker individual diagnostics and treatments..” Dr. Dan Peterson, 2008 Swedish Conference
This is important in several ways. For one ME/CFS is too complex for ordinary physicians to handle. If the WPI can do the heavy lifting for ordinary physicians they can provide them with the tools they need for a quick and ready diagnosis. A important aspect of this is cost and it’s coming down. Those immense viral arrays will be much more affordable in the near future.
Another interesting implication of this new approach is its speed - a potentially important factor in ME/CFS where misdiagnoses are common and not only cost patients time and money but often end with them worse off.
With this new model we can …know very early on what’s wrong with someone and make a quicker intervention’ Dr. Dan Peterson, 2008 Swedish Conference
It’s hard to know how much of this is available now or how much it simply represents what the WPI believes is the future of medicine. Dr. Mikovit’s noted, however, that these intense examinations have already provided some real surprises. They’ve uncovered, for instance, that some patients who do not have cancer nevertheless display immune results that look very much like cancer patients. For them immune regulating anti-cancer drugs are appropriate treatments - something no one would have guessed two years ago.
"There are immune modulating agents and therapeutic drugs that are the market right now largely that we use in cancer therapy that can actually be translated (into treatments for CFS)” – Dr. Judy Mikovits
In a recent interview Annette Whittemore indicated that the WPI fully expects that their intense examinations of patients will uncover other available drugs that no one had dreamed would be effective in ME/CFS. The WPI feels it has a good grasp on the immune abnormalities effecting these and has started dipping it’s toe’s in the drug manufacturing arena to find appropriate drugs.
"We’ve established industry collaborations with drug development companies right now. That’s in the works. We’re starting at the beginning developing drugs particularly for the immune abnormalities we’re seeing. One of those drugs in clinical trials currently in Canada. We hope to start a clinical trial in Reno later this year.” Annette Whittemore
This doesn’t mean that members of this subset are getting well. I know of several members who are, despite being treated by Dr. Peterson, still in terrible shape but as the WPI works its tests and refines its procedure, and as new therapeutic avenues become available, their prognosis should improve. Interestingly an array of innate immune modulating drugs are projected to hit the market in the next couple of years. Each presents a possibility for this group.

The Rest of Us

As was noted earlier this wasn’t just any set of ME/CFS patients. This was the Incline Village cohort; these fluey, lymph node enlarged, viral patients with these odd, and possibly quite dangerous, T-clonal cell rearrangements –which means, of course, that these results will not apply to other types of patients.

Thus far the WPI has focused mostly on the Incline Village Cohort and for good reason; this is the group that got Dr. Mikovits into the program and which has been responsible for much of the support from the National Cancer Institute. WPI researchers have been quite successful in using their technological prowess to begin to ferret out what’s gone wrong in these patients. But this only one subset of the ME/CFS population. Does the WPI have something to offer to the rest of us? This study suggests that once the WPI trains it’s big guns at the rest of the ME/CFS population it will begin to uncover new insights into those patients as well. Dr. Mikovits talked about the dire need to find more subsets in this disease.

“The only thing different (with regard to ME/CFS and cancer) is (with ME/CFS) we’re where we were in 1971 when my grandfather died of cancer and the physician says he had ‘cancer’. Well, that tells me that that physician knows absolutely nothing and when you tell me you have CFS that tells me absolutely nothing as well. “

The question is what does your pathology report show? Do you have an NK cell defect? Do you have an epigenetic profile that suggests that heavy metals are your problem because you’ve silenced your genes through hyper-methylation? So we’re looking at these gene profiles. Jonathan Kerr has shown that those subtypes are going to be different between organophosphate people …. because they’re turning off different genes in that group. For that group it’s not going to be chronic under-activation of your innate or your adaptive immune response… “ Judy Mikovits, Ph.D

Dr. Mikovits reported that they’re considering which group to focus on next . They’ve applied their technology to a group of gastrointestinally challenged patients from the De Meirleir clinic and found another coherent group. They’re considering looking at a fibromyalgia type group. Only time will tell if they can build coherent replicable groups and up blow up this disease (and its name) once and for all.

Efficiency Counts - Research That Works.
“We have a million dollar budget a year. There is no other translational comprehensive program like this. “ Annette Whittemore
If I’ve got this correct the WPI has made amazing progress in the two years or so it’s research team has been together. If it has documented a subset it’s accomplished something that the research community always said was a priority but has made little progress on in twenty years. How has the WPI with its puny budget ($1,000,000/year) been able to do this? Basically because Dan Peterson got the technology he always wanted and the backing he always needed.

Dr. Peterson has forged a unique path amongst ME/CFS physicians. Convinced for many years that one set of patients - a ‘viral/immune’ subset - was radically different from the others he’s focused his attention almost exclusively on them. Hoping that technology would at some point bear his conclusion out he’s been storing samples of this group in a freezer for over twenty years. At that Spain conference Dr. Peterson’s vision finally got into the hands of someone who could do something about it. With the Whittemore’s giving him financial and political clout and Dr. Mikovit’s getting him access to the latest technology the Whittemore-Peterson Institute was born.

Dig Deeper! Dr. Peterson's 2008 Presentation in Sweden

Annette Whittemore’s Next Big (BIG) Project - If Annette Whittemore has her way though, the WPI will only be the beginning. She envisions a network of five federally funded research and treatment centers - with the WPI as their hub - working together to take a hammer to the neuro-immune diseases. She’s taking action NOW and she need’s our help. The window of opportunity at the NIH blew wide open with the Obama stimulus package and she’s stepping in.

Check out Annette's project here.

Dig Deeper! For More Reno IACFS/ME Conference Overviews: Treatment Section Part I / Part II / Surprise of the Conference / Whack Those Patients - The Exercise Studies / Rocking the Conference - Rocking the Research World: Dr Suzanne Vernon at the Mic



Avatar universal
by PlateletGal, Oct 17, 2009
"GUYS: It really is waaay past time to force the removal of William Reeves from his post at the CDC/CFS program."

Amen to that ! !

334400 tn?1276897913
by Crochetya, Oct 17, 2009
I agree to PLateletGal "DITTO"
Why is it that people with ailments are at the mercy of people without empathy??????These empathyless people (mostly men) are in positions to evaluate and make desisions for people who are suffering. These judges or representatives are not even Drs. They have no inclination of what the disease is, much less the pain involved. You know that these empathyless people will sway on the side of their interest, like RX companies they own stock in. I realize this, when I go to a Dr, that tries to put me in the bracket of his textbook, I don't fit,so it is in my head or it does not exist.(just like take an aspirin an set an appt. in the A.M.). I am not strong enough emotionally or physically to deal with this, and I have resulted to other sources such as an attorney to help fight this.

Then try fighting an employer who is trying to make sure you won't recieve benefits by stating the wrong information in your case. The DEVIL is alive an well people. Beaware and do whatever is necessary to beat them.

Accountability is a joke. Rules for some and none for others. Money talks period!

Thanks for the vent.

Crochetya

Avatar universal
by PlateletGal, Oct 17, 2009
Hi All,

For anyone who is interested in the history of CFS... I think you will be surprised at what you read in one of my journal posts

(link) http://www.medhelp.org/user_journals/show/91344?personal_page_id=1064

John Anderson wrote a excellent review... all with the sources and everything. We aren't going to let the CDC do what the government did to soldiers suffering from Gulf War Syndrome.


Avatar universal
by PlateletGal, Nov 02, 2009
A New Health Policy for Chronic Fatigue Syndrome

written by Dr. Fred Friedberg (president of the International Association for Chronic Fatigue Syndrome)

http://www.nytimes.com/2009/11/01/opinion/lweb01fatigue.html?_r=1

________________________________________________________________________________

"In 1991, Dr. Elaine DeFreitas, a virologist at the Wistar Institute in Philadelphia, found retroviral DNA in 80 percent of 30 her patients with chronic fatigue. Some of them also had rare forms of cancer.

The CDC tried to replicate her efforts, but ended research prematurely and later criticized her work. The CDC acknowledged in 1999 that it had diverted millions of dollars allocated by Congress for CFS to other programs."



http://abcnews.go.com/Health/PainManagement/retrovirus-found-chronic-fatigue-sufferers-yield-biomarker-therapies/Story?id=8950867&page=3


Avatar universal
by PlateletGal, Nov 05, 2009
Now (for some) the questions finally begin:



Where was CDC for milestone in chronic fatigue syndrome research ?


http://www.atlantaunfiltered.com/2009/10/28/advocates-where-was-cdc-for-milestone-in-chronic-fatigue-syndrome-research/

Avatar universal
by Richard124green, Nov 13, 2009

http://www.pandoranet.info/   FOR MORE INFORMATION ON DR. FRIEDMAN'S POSSIBLE DISMISSAL FROM HIS TEACHING POSITION BECAUSE OF HIS SUPPORT FOR CFIDS SICK AND IN EDUCATING NEW, BADLY NEEDED DOCTORS - This is all over the Internet now. We can NOT allow situations like this to happen to good people who have provided us with the ONLY support we really have been given over the last 25 years. May William Reeves/CDC/CFS and ABT Associates and Emory University MIND-BODY Program go to jail where they belong and people like Dr. Friedman receive the kudos and appreciation they so richly deserve.  Thank you Dr. Friedman for your support and bravery.

Dr. Ken Friedman’s Courageous CFSAC Testimony on CFS Education
November 12, 2009

Following is a transcript of Dr. Kenneth Friedman’s testimony at the CFS Advisory Committee Meeting Friday, Oct 30. Dr. Friedman is an active supporter of increased medical education regarding ME/CFS. But, as he notes in this testimony, his very position as associate professor of Pharmacology & Physiology at University of Medicine and Dentistry of New Jersey is in jeopardy because of these activities.

___________________________

Chronic Fatigue Syndrome Education in the United States
Testimony for the Chronic Fatigue Syndrome Advisory Committee, Oct 30, 2009
by Kenneth J. Friedman, PhD
Treasurer of the International Association of CFS/ME
Director of Public Policy for P.A.N.D.O.R.A., Inc.
Scientific Adviser to Lifelyme, Inc.
Board Member & Chair, Medical Student Scholarship Committee, New Jersey
Chronic Fatigue Syndrome Association
Board Member, Vermont CFIDS Association
Good morning!

My name is Kenneth Friedman and I am a medical school professor. I have been asked by the IACFS/ME to comment upon the status of Chronic Fatigue Syndrome education in the United States.

Comments on the Academic, Medical School Environment

The Director of the Office of Ethics and Compliance of my employer has informed me that my off-campus activities related to CFS which include: testifying before this Committee, serving on this Committee, providing continuing medical education courses, establishing medical student scholarships and assisting with healthcare legislation are not part of my responsibilities as a University Professor.

I am told that I will be punished with a penalty as severe as termination of my employment for these activities. I am not a unique target.

• Colleague Ben Natelson has left the same school.

• A different medical school has refused to permit access to their medical students to discuss CFS or inform them of a medical student scholarship.

• A statewide health care provider, with no physician capable of managing CFS patients, refuses to permit a CFS training session for their physicians.

The failure of the CDC to convince the medical-academic establishment of the legitimacy of CFS, and the urgent need for its treatment, has created this environment.

Comments on Medical Student Education

High ranking officials of medical education have testified before this Committee that they are powerless to control the curriculum of medical schools, and cannot mandate the inclusion of Chronic Fatigue Syndrome in the medical school curriculum.

• Were the CDC to mandate the reporting of CFS to the Federal Government, as it does for other illnesses, the National Board of Medical Examiners would have no choice but to put CFS questions on the National Boards.

• If CFS questions were to appear on National Board licensure examinations, medical schools would have no choice but to include CFS in their curriculum.

I have appeared before this body on two separate occasions arguing for the use of existing student programs within both the NIH and the CDC to rotate medical students through NIH and CDC laboratories. I have pleaded for dialogue and feedback on any of my proposals. I have heard nothing.

The only mechanism for medical student education for CFS is the medical student scholarship programs run by patient advocate organizations. We now have programs running in three states. How many scholarship programs must be mounted by state patient advocate groups before the CDC mounts a single, national medical student program?

Comments on Continuing Medical Education for Physicians

To my knowledge, the CDC's on-line continuing medical education CFS course is the only involvement of the federal government in healthcare provider education. Does the CDC honestly believe that sitting in front of a computer screen for a few hours will make a physician capable of diagnosing and treating CFS?

From the CFS Community's perspective, what is the impact of the on-line course on diagnosis and treatment of CFS?

• From Vermont CFIDS Association: There is no increase in the number of physicians who diagnose or treat CFS in this state.

• From New Jersey Chronic Fatigue Syndrome Association: The number of requests for physician referrals to our helpline has not diminished.

Comments on Chronic Fatigue Syndrome Educational Materials

In my opinion, all federal and private sector literature concerning Chronic Fatigue Syndrome is out of date. There is no established mechanism for updating health care provider literature.

Of the available literature, the most authoritative and accepted source of information on Chronic Fatigue Syndrome is a physician's diagnosis and treatment manual not produced by the Centers for Disease Control, not produced by the National Institutes of Health, but produced by the New Jersey Chronic Fatigue Syndrome Association - The Consensus Manual for the Primary Care and Management of Chronic Fatigue Syndrome.

I ask that this Committee recommend to the U.S. Secretary of Health:

• That a national diagnosis and treatment manual for CFS be created,

• That a panel be formed to write this manual,

• That the Department of Health and Human Services underwrite the expense of producing and distributing this manual.

With regard to the recent Spark! Awareness Campaign and the accompanying Physicians Toolkit, not one patient in the State of Vermont ever saw the patient pamphlet. An incredible waste of money!

Conclusions

The only on-going educational programs for medical students and physicians that involve human contact come from patient advocate groups.

• Patient advocate groups are the current source of educational materials for CFS.

• They rely on the assistance of academicians.

• If academicians are threatened with termination of employment for participating in Chronic Fatigue Syndrome education, there will be no educational programs.

I beg you to consider the magnitude of this problem.

I beg you to undertake a course of remedial action.

Thank-you!


Avatar universal
by Richard124green, Nov 13, 2009
See also Hillary Johnson's brilliant website/blogs at: www.oslersweb.com for inside reporting on the CDC/CFS. She's brilliant!

See also www.cdcchatter.net to see comments on CFS and the request for a change in leadership - remove Reeves.


Avatar universal
by PlateletGal, Nov 14, 2009
Richard124green,

It is amazing that Dr. Friedman was threatened by his employer ? He was told that he could lose his job if he testifed. Many of the CFS groups are watching this very closely.

Avatar universal
by muffn, Nov 23, 2009
www.cdcchatter.net for NEW post on the CDC's problems and a statement about the XMRV virus and how it caused an explosion of rage across the internet websites and blogs. Interesting but I don't know that anything will get the CDC to get rid of Reeves, his crew and clean house from top to bottom.

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