Saturday, May 2, 2009

Why is the media hyping Tamiflu?

Hmmmmmmmmmmmmmmmmmmmmmmmmmmmmmmm

Thanks, Rik, for pointing this out!

Could this be a media circus?


rik

I just found this on-line:

 BIRD FLU - US PROPAGANDA!

"Bird Flu"

Do you know that 'bird flu' was discovered in Vietnam 9 years ago?

Do you know that barely 100 people have died in the whole world in all that time?

Do you know that it was the Americans who alerted us to the efficacy of the human antiviral TAMIFLU as a preventative.

Do you know that TAMIFLU barely alleviates some symptoms of the common flu?

Do you know that its efficacy against the common flu is questioned by a great part of the scientific community?

Do you know that against a SUPPOSED mutant virus such as H5N1, TAMIFLU barely alleviates the illness?

Do you know that to date Avian Flu affects birds only?

Do you know who markets TAMIFLU?

ROCHE LABORATORIES.

Do you know who bought the patent for TAMIFLU from ROCHE LABORATORIES in 1996?

GILEAD SCIENCES INC.

Do you know who was the then president of GILEAD SCIENCES INC. and remains a major shareholder?

DONALD RUMSFELD, the present Secretary of Defence of the USA.

Do you know that the base of TAMIFLU is crushed aniseed?

Do you know who controls 90% of the world's production of this tree?

ROCHE.

Do you know that sales of TAMIFLU were over $254 million in 2004 and more than $1000 million in 2005?

Do you know how many more millions ROCHE can earn in the coming months if the business of fear continues?

So the summary of the story is as follows:

Bush's friends decide that the medicine TAMIFLU is the solution for a pandemic that has not yet occurred and that has caused a hundred deaths worldwide in 9 years.

This medicine doesn't so much as cure the common flu.

In normal conditions the virus does not affect humans.

Rumsfeld sells the patent for TAMIFLU to ROCHE for which they pay him a fortune. Roche acquires 90% of the global production of crushed aniseed, the base for the antivirus.

The governments of the entire world threaten a pandemic and then buy industrial quantities of the product from Roche.

 

Thursday, April 30, 2009

CFS on Twitter

OK... we are going to FLOOD the webwaves with Info..
All members here that have a Twitter account...
Please Search for "ME_CFS_unite" and ask to follow.
There are only 2 others out there so far..
but if we can get many to join the communication will be
instant @ 140 characters or less < ;-))

http://www.twitter.com

See you there... Spread the Word.

*cheers*
Nelcha





 

CFIDS Assn Newsletter now available online

 
The CFIDS Association of America We're trying something NEW, for Facebook fans first! Last year's spring Chronicle is now available online through the magic of Yudu. Follow the link and let us know what you think about the magaizine and this means of (no-cost) access. (It takes a minute to load.)
 





 


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Wednesday, April 29, 2009

Pat's CDC Testimony

Thanks for this opportunity to provide input to your new strategic plan.

Five years may seem like a long time to plan ahead for a government
research process, but it is short indeed when compared with the time
many people with CFS have been ill.

Over 1.5 decades ago, I attended meetings of the CFS Inter-Agency
Coordinating Committee meetings, later called the CFS Coordinating
Committee, and now known as the CFS Advisory Council. Then Assistant
Secretary for Health for HHS, Dr. Phillip Lee, thought CFS was a
disease that needed special attention. He started this
Congressionally chartered group to get to the guts of the
problem. He was a friend to those of us with CFS; our last friend, it appears.

People who are among the stricken have been trying to tell the CDC
(and NIH) what we needed to happen for at least that long. We have
gone to Congress with our pleas for assistance. We have seen money
appropriated for CFS research spent on other projects. We have
gotten a lot sicker. We still have none of the things we have been seeking
.

I don't expect a lot of change in the next 5 years from the CDC
program, frankly, because the same people are still plowing the same
rows. I'd feel a lot more confident if new horses were at the hitch.

However, you are asking for input to this 5 year plan, and I'm going
to give you all some.

First, I wish to comment on the External Peer Review Report on the
last 20 years of the CDC's work on CFS. The report was overwhelmingly
complimentary of the work at CDC, finding that only their planning
process was lacking. Thus we are here today.

With all respect to the reviewers, I cannot let these three
statements in that report stand without
remark.
* "Gene expression studies ... have led to interesting results."
* Gene expression studies are intellectually interesting, but
all funds spent on those projects have led to no positive results
that can be applied to the CFS public health problem. Perhaps as
pure research on a sample of people with CFS and without, I can
acknowledge the "interesting results." In whose lifetime, however,
will these studies actually help people who are ill?
* "There is much talk about approaching the study of complex
chronic illnesses by using a "biopsychosocial model", the CDC
research team has actually "walked the
walk."

* The "Biopsychosocial Model" is another term for "Mind-Body"
model, or the BPS (biological, psychological and social) model of
what influences a patient's recovery and/or functioning. I have
learned to be very wary of these terms, because they usually end up
in discussions of Cognitive Behavioral and Graded Exercise Therapy.
I personally believe that one's outlook on one's life does influence
how one copes with this disease. But no amount of exercise or
vigorous yay-saying can get a person with the severest form or phase
of CFS out of bed and back to work. This is like stating that CBT or
GET can get people with MS or ALS back on their feet and to work. I
do not believe that any U.S. health institution deserves
congratulations for their investment in CBT and GET as it applies to
severely ill people with CFS.
* "The panelists also believed that the CDC was the best placed
institution to lead the establishment of both research and
educational networks, both nationally and
internationally."
* I must beg to differ with this statement. The CDC is a
public health institution that should be performing work that
directly affects the nation's well-being. Since no amount of work
performed at the CDC in the past 20-plus years has had a positive
effect the health of chronically ill people with CFS, it is time to
move the leadership for this work to another Federal institution.

U.S. taxpayers have spent money for the work done so far at the
CDC. So the data that has been developed must be shared with outside
researchers, who may be able to untangle the surveys you have done
where you mixed apples - people who do meet an internationally
recognized definition of CFS - and oranges - people who have chronic
fatigue only, such as those with diabetes, cancer, anemia, and
clinical depression.

The CDC must show some interest in the results of CFS researchers
that are not funded through the CDC program. CDC results and those of
other U.S. researchers are often at opposite ends of the spectrum of
analysis. There is a reason this is the case. You are too heavily
entrenched in what you have done in the past.

The old leadership of this program at CDC MUST GO. It is time that
the CDC realizes that your "successes" have been internal to your
institution, and the results of outside researchers have been orders
of magnitudes above your own. The department this research is
located in is even paradoxical. The CDC's CFS web site does not
acknowledge the role of infective agents in CFS, yet the program's
staff is located in the Chronic Viral Diseases Branch. No wonder it
is impossible for you to communicate in any meaningful way with
people who are sick with CFS.

~~~~~~~~~~~~~~~~~~O~~~~~~~~~~~~~~~~~~

Second, I want to inject some personal remarks on the hell I have to
live in every day of my life because of the lack of decent science
being practiced.

This last one third of my entire life, since I fell ill in November
of 1989, has been spent ping-ponging from one medical expert to
another, trying to find help so I can get over this disease and
return to my work. I enjoyed my work as much as any of you at the CDC
must. Over time, I have realized that I will never return to work.
I've been robbed of that aspect of my life, as well as
my interactions with family and friends, my plans made before
illness struck me down, to travel, to further study several
disciplines like philosophy and conduct research of my own in my
chosen academic field, astrophysics. Those ambitions were dashed
when CFS struck me down. I can't even read a short story coherently
now, and understand what I have read 10 minutes later.

And I have been kept down through the ineptness and corruption that
is my best characterization of my government's weak attempt at
handling this disease. To this day, I am ashamed to say that I have
CFS. The CDC has done nothing to remove the stigma of this disease
from the public, and even the majority of the medical providers I
consult are unforgiving in their attitude toward my diagnosis. My
government MUST take my disease out of your hands and find a better steward.

I should not have to school my doctors on CFS by bringing them
research papers
I have found through the Internet. It shouldn't be
up to me to ask them to decide whether the results of a paper might
help me or apply to me. My cardiologist scoffs at the possibility
that my 4 separate heart problems might be CFS-related. Yet there
are research results that might support that conclusion, and my
treatment might be different if it is so.

My life is hell. Suicide has seemed my only option during several
particularly horrible relapses. Only my personal faith has kept me on
this side of the sod. That, and my stubborn, some might say
relentless determination to stick around for the show.

~~~~~~~~~~~~~~~~~~O~~~~~~~~~~~~~~~~~~

Finally, here are remarks about the changes I hope will happen now
that we have a new President.

When the Obama-Biden administration was transitioning into the White
House, they asked for input on all sorts of subjects from groups
across the nation. Groups that might meet up in someone's living
room and author a piece of guidance that might be included in the
next 4 years of governance.

Several people with CFS "met up" in a virtual living room, and wrote
a paper for Mr. Obama's HHS transition team that summed up what is
needed for our health to improve and to see some preventative
measures taken to reduce the number of people who have CFS.

Copies of this paper are available on the HealthReform.gov web page,
under search terms CFS and Myalgic Encephalomyelitis. The paper is
the only one featured from Delaware. It's just a few pages long, and
I hope each of you will read it.

In it, we highlight just a few things we want to see happen. Among
those that are appropriate to CDC are:

* Instead of mangling the definition of CFS once again, just
adopt the Canadian Consensus Document for diagnosing and treating
CFS.
* Accept the World Health Organization's ICD-10 designation of
"CFS" within the chapter on neurology, at G93.3, including the
designation of Myalgic Encephalomyelitis (M.E., as CFS is known in
several other countries.)
* Focus on biomedical research instead of psychosocial. The germ
theory of disease is over a century old, in it's well known Western
form, and over 2 millennia old as it was known to Roman
physicians. Many people fall ill with CFS beginning with a flu-like
illness. I suggest that the gene expression variants found in CDC
research may be due to the influence of outside organisms that have
not yet been associated with CFS. Your chase for a BPS underpinning
of CFS is not fruitful.
* Whoever is in charge of understanding the difference between
fatigue associated with infective and other physical diseases, and
major depression, which may have fatigue as one symptom, please come
to the CDC and enforce this understanding. Including even a single
person in your data aggregation studies who suffers from clinical
depression skews your results fatally. Your study cohorts in both
Georgia and Kansas are flawed because of the inclusion of people who
do not have CFS.
A researcher can form a group that is littered with
selections that ruin the outcome of a purely scientific analysis. In
my universe, we call these distortions of study subjects "selection
effects" and we diligently try to avoid them. The CDC researchers
seem to want to build them into their groups. That is not science,
it is just a way to provide an underpinning to a pre-determined
outcome. In any event it is bad science.
*

~~~~~~~~~~~~~~~~~~O~~~~~~~~~~~~~~~~~~

In conclusion, I want to go back to one of the External Peer Review's
suggestions that CDC work more directly with pharmaceutical companies
that may show interest in bringing new drugs to the market for
diseases like CFS/ME.

There is one drug currently being withheld from the market by the
FDA, called Ampligen, that has a proven track record - in other
countries - with symptom alleviation in people with severe CFS and ME.

Perhaps CDC can show some leadership in getting that drug marketed at a reasonable cost in the United States. Ampligen is an antiviral
with specific benefits to those of us who have a certain variant of
HHV-6a that is an apparent cause of our illness. This is a "boots on
the ground" project that you could run with right now, and make a
difference to people who are sick.

No number of incorrect web pages nor meetings nor announcements of great findings in research will do more for the patient community than just getting some treatments available.
 
 





 


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Mary's CDC Testimony

Thank you for allowing me time to speak.

I have too little time to get across so much, so I'm going to cut to the chase:.

* A completely new group should be created to operate and run the CDC's program on CFS. In the 25 years since the CDC was first contacted about the mid-1980s cluster outbreaks, the agency has done absolutely nothing to help a single patient, and done much that has harmed patients.
At least one million American adults have this disease. CDC admits that at least 85% of patients do not have a diagnosis at all, and half of all patients cannot work because of the severity of the disease. That's a failing grade by anybody's scale.
This is a travesty. This is a disease that is as severe as multiple sclerosis. The CDC's behavior over the past quarter-century towards these patients is completely unacceptable.

* CDC should immediately adopt the Canadian consensus diagnosis for clinical work. It a bit outdated now, but it paints a much more accurate picture of this complex and baffling illness. U.S. Drs. Dan Peterson, Nancy Klimas, and Martin Lerner were on the committee. And it does not rest on the theories of the narrow "biopsychosocial" school of British psychiatry. A summary of the Canadian consensus document can be downloaded here:
http://www.mefmaction.net/Portals/0/docs//ME-Overview.pdf

* In 1994, The Annals of Internal Medicine published what has come to be called the Fukuda Definition for research into the disease Chronic Fatigue Syndrome. Almost all the useful research on CFS was done using this definition. [Fukuda et al, "The chronic fatigue syndrome: a comprehensive approach to its definition and study." Annals of Internal Medicine, (1994) 121:953-959.]
However, in 2005-2006 the CDC shifted to the Reeves "international empirical" definition. The main difference between the Reeves definition and the Fukuda definition is that the Fukuda definition did not admit patients who had a diagnosis of depression for research purposes. Dr. Reeves lifted that constraint, with the proviso that the bout of depression have resolved at least FIVE YEARS before the ONSET of fatigue. [Reeves et al. "Identification of ambiguities in the 1994 chronic fatigue syndrome research case definition and recommendations for resolution." BMC Health Services Research (2003) 3:25. <http://www.biomedcentral.com/1472-6963/3/25>]
The "empirical" part of the definition refers to a set of questionnaires. Unfortunately, the questionnaires do not achieve the goals of the international committee to revise the Fukuda definition. The questionnaires were verified during a two-day hospital stay in Wichita, Kansas, where unfortunately only 6 patients identified with CFS during the 3-year community study conducted earlier by CDC were diagnosed with CFS with the questionnaires. The questionnaires identified 43 patients as having CFS, and at most only 10 could have been categorized as "CFS" using the Fukuda definition. That is a slim basis for a new definition, and a very slim basis on which to market a set of questionnaires. [Reeves et al. "Chronic fatigue syndrome - a clinically empirical approach to its definition and study." BMC Medicine (2005) 3:19. <http://www.biomedcentral.com/1741-7015/3/19>]

DePaul psychologist Leonard Jason demonstrated recently that, when applied to a set of patients in Chicago diagnosed using Fukuda, the questionnaires missed the sickest of the CFS patients, and a third or more of the patients now included had a major depressive disorder. Setting aside the depression, they still would not have met the Fukuda definition. [Jason et al, "Evaluating the Centers for Disease Control's Empirical Chronic Fatigue Syndrome Case Definition," Journal of Disability Policy Statistics (online first 10/21/08).]
Clearly this new definition represents not improvement but regression. I wonder just who will be helped by it – because patients with depression who are misdiagnosed as CFS are not going to be helped either, just as the worst cases of CFS will be left behind.
Therefore, I join with other patients in calling for a GAO investigation into the inequitable treatment CFS patients have received from CDC regarding both the allocation of funds, and their creation of a definition that ignores the sickest of the patients (who had been included in the Fukuda definition), and brings in patients with a professional diagnosis of major melancholic depression.

* The Fukuda article does not just set a definition for "chronic fatigue syndrome." Fukuda assumed that the patients diagnosed using this definition would represent a heterogeneous set, and that the next order of business was to go about identifying subgroups making use of biomarkers and objective measures.
That the CDC has steadfastly refused to do – instead turning to the new Reeves definition that actually makes the population even more heterogeneous than it was.

---------------------------------
*My own history with ME/CFS:

I have had CFS since 1994, when I suffered a blackout in my office. When I came to, I could not understand a single work of the bluebooks in front of me. I was a tenured professor – you could say I made my living reading, analyzing, and giving lectures. But now I could not read, could not think, and could not express myself.

I prefer to use the designation M.E. for myself because I fit the Ramsay 1988 description of Myalgic Encephalomyelitis (M.E.), the Hyde descriptions (1992, 2006), and the technical definition in Stedman's medical dictionary. I also meet the Canadian consensus document's criteria for ME/CFS. M.E. and CFS are classified together under neurology in WHO's ICD-10 at G93.3. However, since the CDC does not recognize M.E., I will use "CFS" for the purposes of this essay.

The next four years I went downhill very quickly. By the fall of 1998 I had severe cognitive dysfunction, including expressive dysphasia, poor short-term memory, dyslexia, ataxia, and severe confusion. I could not pass a simple Romberg test. As an example of the severity of the cognitive dysfunction, I once poured a pot of coffee into a silverware drawer absolutely convinced it was a cup. At night I would fall into dreams where I could walk again, and awake to realize I could not.

I had constant pain behind my eyes and in the back of my neck, headaches that sometimes reached the level of migraines, muscle aches, and sore, swollen glands. On a bad pain day all I could do was lie in the dark, listening to my favorite movies.

In the fall of 1998 I was diagnosed for the 37kDa Rnase-L defect, yet another bout of active Epstein-Barr Virus, and active Human Herpesvirus 6, Variant A.

In February 1999 I began treatment with the experimental drug Ampligen, an immune modulator that also works as an effective antiviral. Within six months my symptoms had improved dramatically, and the three biomarkers disappeared. I could drive, I could walk, I could read a newspaper. I danced with my son at his wedding.

I went off Ampligen for a year, and then relapsed severely. So when I went back on Ampligen I was determined to stay on it, even though it cost my family out-of-pocket $20,000 a year.

[Note: Most patients don't make enough to afford $20,000 for a single medication. Many of my friends live alone on less than $12,000 a year; many of them have no health insurance – public or private – at all.]

A year ago February I lost Ampligen. It is supposed to be reviewed by FDA in May, unfortunately before the new FDA head will be in place. I have not been able to get it back, even paying for it - and I fear I will lose it forever.

By September I was in relapse. I have suffered from a low-grade fever for months, the severe pain in the back of my neck and behind my eyes is back, with the headaches. I have returned to the wheelchair. I cannot drive.

We can now add cytomegalovirus to the list of diseases. I scored 16 on a VO2 MAX stress test, which by itself would categorize me as disabled according to social security. A SPECT scan showed "decreased activity in left lateral temporal lobe and occipital lobes," and we can add a low natural killer cell count and function to the list of immune problems. We tried Vistide for the cytomegalovirus, but my liver rejected it.

I do not have a single day without pain. I do not have a single day without confusion.

I have testified to the CFSAC for ten years about these biomarkers, symptoms, and treatment. Did the CDC respond with interest in a possible subgroup? No. With deeply flawed statistical analysis that must have Popper whirling in the grave, and a complete misrepresentation of Occam's Razor, they take each possible biomarker and test it on a sample of CFS patients, then report back that everybody didn't have it, so it's not worthy of further study.

Well, yes. Everyone didn't have it. That is what you would expect out of a subgroup, isn't it?

------------------------------
*We do not have a "fatiguing" illness.

We were assured when the Holmes committee came up with the name "chronic fatigue syndrome" in 1987 that it did NOT mean fatigue writ large, that clinicians, researchers, and the public would understand it was a discrete illness, different from "fatigue."

Now the CDC has even betrayed that promise, creating the category of "fatiguing illnesses" and plopping CFS down in it as the poster child. I don't see leukemia there, or congestive heart failure. Just other poorly understood illness that - frankly – impact women far more often than men.

The current group's insistence that CFS is primarily a "fatiguing illness" shows the absence of any real knowledge of – or interest in – the disease as it exists for us out here, as we have it. We can't find doctors. Nobody understands what this is. That Reeves himself would dally with the concept of "fatiguing illnesses," especially in concert with British psychiatrists, shows that he either does not understand the disease – although surely he knows everything I know about it- or he does not really care. If you look at the pamphlets that CDC sends out to medical personnel who request information on CFS, you will find that they state starkly "There are no tests and there are no treatments." That is simply not true. They devote an inordinate amount of print to "CBT" (Cognitive Behaviour Therapy) – a type of analysis developed by British psychiatrists, using a different definition entirely for CFS, who claim that they need to "learn better illness beliefs," "GET" (Graded Exercise Therapy), which claims to be able to return patients to work with graded exercise, no matter how sick they start out, and the omnipresent SSRIs.

Imagine telling a roomful of patients with MS they would be fine if they just forgot to "play the sick role" and began to exercise again. What must Dr. Reeves think of us?

The name chronic fatigue syndrome was created in response to requests for attention to a number of cluster outbreaks, perhaps the best known of which occurred in north Lake Tahoe, on both the Nevada and California sides.

After 25 years, many of those patients remain severely ill, and others are doing okay only because they are on medicines that are either targeted at viruses or the immune system.

NONE of them would fit in the new Reeves definition.

Shouldn't the definition at least fit the patients it was commissioned to describe?

As I descend into Hades for the third time in my life, I beg you to please start over with this disease, and this time take Dr. Fukuda's imperative seriously – cooperate with the independent research centers that are already creating subgroups with biomarkers that also relate to a proposed etiology.

As I sat on the phone waiting for the chance to testify, imagine how I felt to have you segue into swine flu, and away from us. If the patients with swine flu end up with chronic viral infections or immune disorders like the one we have, will they also be completely abandoned by CDC?

There are good private research centers already out there, often in concert with a clinic –as examples, Dr. Nancy Klimas' CFS study group in Miami, and the new Whittemore-Peterson Institute (WPI) in Reno, Nevada. The WPI does not even have a building, but they are already producing cutting edge research into the viruses and immune dysfunctions surrounding this disease, using new tools made available for the study of molecular medicine. So there is reason for patients to be hopeful.

------------------------------
*What should the CDC be doing?

I see the role of the CDC not as primary researcher, but rather as the center that can pull in information from top researchers, in this case coordinate with the international research organization IACFS/ME to establish clinical definitions and identify subgroups, and then use the strength of the federal government to require the reporting of cases nationwide.

Currently you will not find a single article on the CDC's website for CFS that has not been authored by a person who was a member of CDC at the time. Most of the CDC's "bibliography" has Dr. Reeves' name on it. The CDC should not be someone's personal resume. Compare the CDC's bibliography on CFS with the bibliography on the back page of the Canadian Consensus Document (see above). The second bibliography ranges over a number of specialties and many authors. It is not a platform for a single person, or single point of view. THAT should be what doctors see when we go to CDC's website.

Rather than trying to do everything themselves, the CDC needs to go off-campus and make use of what's already there. As one example, there has recently been a lot of research, ignored by CDC, into what happens when more than one virus is activated at the same time. It would have been nice if CDC had funded more of that research, then paid attention to the results, BEFORE this new epidemic, wouldn't it?

As was suggested by the CFSAC (Chronic Fatigue Syndrome Advisory Committee to DHHS) in 2003, CDC should adopt the ICD-10 classification of CFS under neurology, together with Myalgic Encephalomyelitis (M.E.). The Canadian Consensus Document, recommended above, was written in response to ICD-10.

Finally, there is evidence that at some point in its lifetime "CFS" is contagious. Again, the CDC has ignored that – but they never really considered it. Hopefully they will do so before another 25 years has passed.

Please be aware that many of us have serious immune defects and are therefore more endangered by the possibility of a swine flu epidemic than the average citizen. We are especially concerned that there will be patients left damaged by this new flu strain who will, like us, still be sick 20 years from now.

In December I joined with a group of online ME/CFS patients to "meet" to discuss health care reform for the Obama-Biden transition team. The team chose a report from each state to publish on their website; ours represents my home state of Delaware. While the report was intended for the DHHS, the CDC obviously plays a prominent role. You can read the report at:
<http://healthreform.gov/communityreports/delaware/delaware_19711.html>

Mary M. Schweitzer, Ph.D.




 


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Tuesday, April 28, 2009

Facebook | The CFIDS Association of America's Notes

 
 
Kim McCleary's Presentation at CDC Meeting on April 27, 2009
CDC Stakeholder Meeting on the 5-year Strategic Research Plan


My name is Kim McCleary and I am the president & CEO of the CFIDS Association of America, the nation's largest and most active organization working to make CFS widely understood, diagnosable, curable and preventable. This is my 19th year of service to the organization, and in all that time, I have missed just one public meeting on CFS. I am deeply familiar with the CDC's research program and CDC staff is quite familiar with me. I've got just 5 minutes so I'll cut to the chase and focus on five areas of concern as the CDC develops its 5 year strategic plan for CFS research.

The 4 goals CDC has provided us (http://cdc.gov/cfs/draft_research_plan.htm) are certainly worthy and closely match our organization's goals. If that was all we had to discuss, we could end the meeting early and be on our way. But a strategic plan requires more than that. (Dr.) Steve (Monroe) has just told us that the swine flu cases in the U.S. make it a national "public health emergency." With 4 million cases of CFS in the United States alone, what does it take to have CFS declared a public health emergency?

I will agree with the four peer reviewers who met in November of last year that at one time, this program was doing good work and contributing to the field and to our understanding of CFS. But the CFS research group has lost its mojo. The CDC's CFS research group receives half of the (meager amount of) money that the U.S. spends on CFS. Half. CDC has provided extensive financial information on its CFS spending between FY2005-2008, during which time expenditures totaled about $23 million. Since 2000, CDC has spent about $71 million on CFS and it has published 115 peer-reviewed articles in the same time. I doubt most academics could survive with that record. There is a tremendous amount of data housed in this program that needs to be widely shared so we as taxpayers and as advocates yield a better return on our investment than CDC can produce on its own.

Second, by virtue of the plan outline posted on the CDC's website for a CDC RESEARCH plan, it does not seem that three of the four goals are consistent with a research plan for a branch housed in the Coordinating Center for Infectious Diseases. Using organizational information contained in the CDC's 2008 Congressional Justification document, Goal 2 of the research plan, clearly an education-related activity, appears much better suited to either the National Center for Health Marketing or the National Center for Chronic Disease Prevention and Health Promotion. The same is true of goal 4. But these tasks are not logically part of a research strategic plan and are not well-suited to the individuals and leadership currently working in the Chronic Viral Diseases Branch. Even Goal 3 seems an odd fit. This group has become increasing isolated and insular and is not currently collaborating with any clinical investigators, yet it proposes to develop international consensus on the management of CFS. Note that its clinical recommendations on the web site focus on UK guidelines that are very controversial in that country. How does CDC expect to replicate the success of the clinics in Bibb County, Georgia, that Dr. Royal (from Abt Associates) described? Educating health care professionals is necessary and worthwhile, but it's cost prohibitive to go town to town with the approach used in Macon. How will CDC address that?

Third, this group named the "Chronic Viral Diseases Branch" is currently doing little if any research on viral (or other biological triggers) of CFS. Although they supported the landmark Austrialian Dubbo Infection Outcomes Study, there is no current work to evaluate EBV, HHV-6, enteroviruses and other agents as triggers of CFS, despite the finding that 10% of these and other acute infections do not successfully resolve and result in a CFS-like state. Instead, the group is focused on early life psychological stressors, a risk factor in most chronic illness, and proposes to study whether the economic crisis will result in a higher rate of CFS among respondents in the next phase of the Georgia surveillance study. So, why is this psychosocial dimension the focus of research in the NCVZED and the CVDB? So much opportunity has been lost to study the rates of CFS occurring in the wake of outbreaks of West Nile Virus, avian flu and now swine flu, and other acute infections or chronic exposures like toxins and molds. There is great opportunity cost to the choices that branch leadership has already made in an apparent vacuum within its own center.

Fourth, you can't build a sustainable structure on a weak foundation. Yet, it is the strong belief of many in the CFS community – researchers and patients alike (with all due respect to the four individuals who served as peer reviewers in November) – that the empiric criteria is a weak foundation. It is used only by CDC and defines a different patient population and make its studies difficult – if not impossible – to compare to all other studies. So how much of the $25 million or so that will be dedicated to CDC over the next 5 years will be wasted as a result of this shaky methodological foundation?

Last, the clear consensus message at the two most recent international research conferences on CFS has been the need to establish CFS subsets to facilitate research, objective diagnostics markers and more effective treatments. Yet the research outline makes no reference to this need and focuses on the need to identify biomarkers only for "incident CFS" which may leave out all longer duration periods of illness, and most of the patients who are already ill. This is an unacceptable goal for our nation's public health agency.

CDC alone has the resources and infrastructure to understand the long-term health consequences of CFS and we underscore the importance of CDC conducting longitudinal follow-up studies to track patients for several years. However, this is not included in the research plan. Right now we don't know what happens to patients with long-term illness. I can tell you from having known many patients over almost 20 years now that there are some strange and troubling things that occur. We don't know whether this is due to an acceleration of aging, consequences of long-term disability, or aspects of CFS that are exacerbated over time in some patients. CDC is the only agency that can adequately study it.

Finally, for any strategic plan it is necessary to address performance milestones, accountability measures and transparency, especially since President Obama made these priorities in the earliest days of his presidency. I know that these values are held by CDC more broadly and hope they will be enforced at the branch level through this plan.







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Putting Blame Where it Belongs

On today's Oprah, they're discussing things like flesh-eating bacteria and MRSA.
 
The first woman returned to the ER several times and was repeatedly brushed off until finally someone realized it was necrotizing fasciitis.  She kept telling them she didn't feel well and they just kept giving her pain pills.
 
Dr. Oz observes that patients have to be diligent about explaining to the doctor what it is and how it is that it feels "not right", and doctors have to be better about listening.
 
If my doctors had listened to what I said, and not twisted it around into what they wanted to hear, I probably would have been back in remission after a few weeks of proper treatment.  Instead, they decided I didn't know what I was talking about, "nothing you said made sense", and allowed me to continue deteriorating -- for most of the time that I was seeing the first medical group, I wasn't taking any prescriptions: they wouldn't give me anything, or when I called in and reported a problem with the prescription, I was told that the prescription couldn't be changed till my next appointment.
 
I told them what my diagnosis was.  I told them what tests would confirm it.  I told them what the experts say to prescribe.  They didn't listen, and I'm the one who pays the price.
 
 


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Poster Design Contest

PERMISSION TO FORWARD, REPOST AND USE IN NEWSLETTERS

In addition to our UK-wide poster design competition, which started out as
exclusively for
M.E. Awareness Week 2009 but which, due to an overwhelming response - and
still they come - now
gives us themes for one-a-month, we have come up with a cracker of an idea
for one particular
theme, which we believe everyone should have a chance of sharing in because
it is equally
applicable around the world.

It is to design a poster with the heading W.H.O. M.E.?
I'm sure you get the idea of the World Health Organisation's recognised
Myalgic Encephalomyelitis G93.3
(and none of your chronic fatigue nonsense) and, of course, the play on the
words M.E. and ME (myself).

Since time is very short, for International Awareness Day on 12th May, we
need to move fast, if we are to
make it a truly International affair and to share the work load we are
appealing for help from an International
M.E. co-operative of individuals and organisations, who represent M.E. as a
discrete neurological illness,
quite distinct form others under the Chronic Fatigue Syndrome banner. Others
need not apply!
If you have to ask what is meant, it probably isn't for you.

Here's how it would work: Anyone, from anywhere in the World, amateur or
professional, can submit a design.
If you are going to enter, you need to do it NOW. Entries to
info@mefreeforall.org

We also need someone NOW who can set up for us a uniform standard system of
receiving entries at
info@mefreeforall.org, so that we have the software to open them and, then,
a method of dispatching them to our
local volunteers, now in all countries taking part, in an A4 size, ready for
them to click a button and walk them round
to places to display. Again, we need at least one such person NOW. (We don't
need anyone to tell us their theories
or problems that could be faced - we have had plenty of those, thank you,
just the person who can really do the job).

The posters will be A4 size, have the name of the person who designed it (if
they wish, or not if they prefer anonymity)
and the name of the national/local M.E. support group of the country or
region of the M.E. Co-operative members taking part.

We have at least 2 MEFFA volunteers dedicated to this job alone but we are
going to need some help.

To summarise: We need people to produce eye-catching designs, devise a
uniform, simple, system to receive
and dispatch, some administrators and some local reps to help make sure they
get displayed NOW. IMMEDIATELY. (No pressure then!)

Remember, we want the people who can and will do, not any other sort, thank
you very much.

Any offers of help and those wishing to be identified with the International
M.E. Co-operative, please
e-mail to my e-mail address or info@mefreeforall.org
that is either drjohngreensmith at mefreeforall dot org  OR  info at
mefreeforall dot org
with "W.H.O. M.E.?" poster competition  OR International M.E. Co-operative
etc. in the subject line.

Note: To click the links to any related letters about the poster
competition, so far, it is necessary to be registered with ME Free For
All.org (Details for new subscribers below)

To read a letter from Dr John Greensmith
click here  http://www.mefreeforall.org/April-2009.1345.0.html#c6830

Or just laugh your head off with our joke of the day
here http://www.mefreeforall.org/Joke-of-the-Day.378.0.html


Cheers
John

--------------------------------------------------------------------------------

How to Register

Click here www.mefreeforall.org to register and log in to ME Free For
All.org.

Registration is free, quick, and you may stay logged in. You may update
details, or unregister at any time.  In the rare event of a problem, please
contact me at drjohngreensmith@mefreeforall.org with "Registration" in the
subject line.

Constructive suggestions are always welcome.

Cheers
John

drjohngreensmith@mefreeforall.org
Dr John H Greensmith
ME Free For All. org






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Monday, April 27, 2009

National Fibro Assn Podcast TOMORROW

National Fibromyalgia Association hosts LIVE Podcast



"Advocating for Awareness"



WHEN:           Tuesday, April 28

TIME:             12 pm PDT - 12:30 pm PDT

WHERE:        Listen live online at www.blogtalkradio.com/fibromyalgia  or
call in at (646) 915-9615



ABOUT THE SHOW:

This is the NFA's 3rd in a series on National Fibromyalgia Awareness Day.
Tuesday's guests include Dr. Jessie Jones, a Professor in Health Science,
Director of the Fibromyalgia Research and Education Center, and past
director of the Center for Successful Aging and Gerontology Programs at
California State University, Fullerton (CSUF).  She has an extensive
teaching and research background in gerontological health and fibromyalgia.
Professor Jones has published widely in the area of promoting health and
fitness of older adults and people with fibromyalgia. Her specialization is
optimizing physical and cognitive function for people with fibromyalgia.

Joining Dr. Jones is Randy Wold, founder of Purple Reign Racing Team. Randy
is an experienced racer riding under the "Purple Reign" banner with his
brothers since he was 17 years old. But as a person with fibromyalgia, he
also knows the physical repercussions, especially after a grueling
quarter-mile drag race with speeds up to 135 mph. To Wold, it's a price he
is willing to pay. Especially if it means spreading awareness among men with
fibromyalgia. Randy wants to let men know that despite its physically
debilitating effects, fibromyalgia need not rob them of their "manliness."



----###-------



Corin Walson, APR

Walson Communications

5051 E. Orangethorpe Avenue

Suite E-216

Anaheim, CA 92807

TEL: 714-970-2268

www.walsonpr.com  


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Answer to Prayer

 
God answers all prayers – sometimes the answer is No.
 
22 years ago, when I first got sick, someone prayed over me, assuring me that this would heal me.  I had a lengthy remission, but I was not "cured".
 
A lot of things have happened over the past 22 years.  A lot of privately-funded research has found interesting things, and a lot of government-funded research money has been proven to be misused for research into things that have nothing to do with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.
 
More importantly, in the past 22 years, I've learned a lot, developed more advocacy skills, and found a helpful tool called The Internet.  The book that probably wouldn't have been published 22 years ago can now be written as a  blog without the interference of a publisher (who would certainly want to censor some of the things I say in order to avoid potential legal problems).  Without a full-time job, I have the time necessary to do concerted advocacy work.
 
Things fell into place too easily once I made the decision to be an outspoken public advocate.  A specialist had told me that because doctors allowed me to deteriorate too far without proper treatment, I would never work full-time again, so I no longer had to worry about a future employer googling me and finding out that I have CFS – my career as a paralegal is over.  I had nothing to lose and everything to gain.
 
At the first public advocacy event I attended, I met someone who became my right arm, co-author  and editor; someone who knows even more about CFS politics than I do, and is always willing to help me with a study citation or a better word.  He introduced me, in person and via e-mail, to other advocates.
 
In the past, whenever things fell into place this easily, it was a signal that I was doing what God wanted me to do.  Looking back, so much of what I did in the past was preparing me for what I do today.
 
The faith healer's prayer that I be cured was answered with a resounding No. 
 
The correct prayer, "Thy will be done" has been answered with all the tools that I needed to be effective in this new role.  On days when I need to feel well enough to do advocacy, I am.  I was even able to attend the Reno conference in March – most years, I haven't felt up to doing much of anything in March.  Clearly, this is what I was meant to do.
 
 




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Damned if you do, damned if you don't

DAMNED IF YOU DO, DAMNED IF YOU DON'T
One of the worst things about CFS is the prejudices and game-playing you'll run into.
Almost every woman with CFS has at some point been told her marital status is the ultimate problem – when I was married, I was told I "resented my husband making me work", and when I was divorced, I was simply "depressed over the divorce"; no need to do the medical testing that CFIDS.org said would be abnormal, because there was a much simpler explanation for it. A friend who has never been married was told that getting married would solve all her problems. Well, I had the same symptoms before, during and after my marriage, so obviously, changing my marital status was not the magic cure!
Whatever you tell doctors will be twisted around in some way to prove that the problem is psychological. According to my medical records, I didn't lose my job because of my symptoms, my symptoms developed only when I got depressed after losing my job. I also didn't stop exercising because I was too weak to continue, I got sick after I stopped exercising, and therefore, would feel better if I'd get off my lazy butt and get back to my regular exercise program. You know, the one that makes me even sicker every time I try it.
When I reported that some days I didn't get dressed because my shoulder was locked and it required several minutes of painful contortions (which often produced intense muscle spasms) to change clothes, therefore, I didn't torture myself unless I was going out, the orthopedic reason for avoiding twice-daily pain disappeared, and the sentence was worded to imply I was simply too depressed to care whether I got dressed or not. Ditto with bathing – some days I was too unsteady on my feet to safely get in and out of the tub, and no one lived with me to find me if I fell, so for safety reasons I didn't attempt it on bad days; that was also lost in the translation so the doctor could portray me as too depressed to bathe. Despite the legitimate physical reasons being in writing on the intake form I filled out, the doctor claimed he understood me to say I wasn't doing these things because I was too depressed – he wasn't misrepresenting the facts, it was a simple misunderstanding. And if no one reads the intake form, his false version is all they know about.
If you refuse anti-depressants (they make me sicker; I've had severe side effects more than once), then you "don't want to get better because then you'll have to return to work". If you accept the prescription, it'll be proof that you know there's not really a physical basis for your symptoms. And God forbid you should admit that the anti-depressants and/or counseling helped you a little, because then they'll force you to continue on them and scold you for not continuing to improve by leaps and bounds – clearly, you're lying when you say you still aren't well enough to work, you really mean that you're just too lazy to work and think you've found an excuse to never work again.
When I admitted to being able to work (literally) "a couple hours a week", I was badgered why I wasn't working full-time. As every CFS patient knows, you can do almost anything once, but you may not be able to do it a second time. In the early years of this relapse, I was able to go out once a week – three days of conserving energy in advance, and three days of resting up afterward to return to baseline. The judge seemingly couldn't process the concept that I cannot do again on Tuesday what I was able to do on Monday, or that working a little could not be extrapolated to being able to maintain the same level of productivity over an 8-hour day, much less five 8-hour days in a row.
The leading California published Court of Appeal case on CFS is Reddick v. Chater. The patient admitted to selling Tupperware. Her description was that family members took the catalogues around and got orders, and assisted her with filling out the forms; she merely turned the orders in to the company for fulfillment. (Which is pretty much the way that I'm currently selling Tupperware, too; I don't do parties.) The Court of Appeal noted that the judge's characterization of her Tupperware "business" didn't square with the testimony; my judge has been exaggerating what I say I am able to do, too – inventing facts to support the conclusion he wants to reach, and dismissing as "not credible" any testimony (even his own expert!) that I cannot work full-time.
If you are trying to work a little, you will be assumed to be able to work full-time. If you are not trying to work at all, you will be assumed to be too lazy to work. There is nothing you can say or do that will lead to the conclusion that you really want to work, want to continue your beloved career, but are physically unable to do so because of your symptoms. According to the disability system, you are guilty of fraud until proven innocent.
If you make the best of a bad situation, find something to occupy your time (say, needlework or reading books), expect to be accused of having an ulterior motive, quitting your job to pursue a hobby at taxpayer expense. If you keep quiet about your symptoms, it'll be assumed you're not complaining because you don't really hurt. But if you don't do anything all day but whine about your symptoms, that will be proof that you're depressed and just need some pills and counseling to return to work. There won't be anyone willing to accept that if you're distracting yourself with your hobby, you don't have time to focus on the pain.
If you won't go out alone because of legitimate fears for your safety, or because you can no longer drive due to your symptoms, expect to have that twisted around to imply that you have psychiatric problems, fear of being alone, agoraphobia, depressed and anti-social, excessively dependent personality ... anything other than the truth that you have a long history of passing out and are no longer legally permitted to drive, and wisely prefer to have someone direct traffic around you if you pass out while crossing a busy street. When put on the spot, one of my doctors did admit there was a legitimate safety issue, I wasn't just an emotional basket case as he'd portrayed me.
Similarly, because I have always been active, I've made a conscious effort to do a little walking and resistance exercises. Damned if you do – the judge concludes that I cannot have CFS because I have not lost muscle tone; damned if you don't – if your muscles have turned to jelly from lack of exercise, they'll conclude that your only problem is deconditioning and you just need to go to the gym a few times a week, and you'll be ready to go back to work in a jiffy.
One of the typed medical reports in my file proves just how little doctors pay attention to what you say. On page 1, it says that I reported having tried one prescription medication with no success. On page 3 of the same report, it says that they prescribed the same thing I'd already told them didn't work. A couple days later, I phoned in to report that having already tried 1 pill and 2 pills with no effect the last time I took the prescription, I had been taking 3 pills and even that didn't help. The doctor's notation on that phone slip? "Tell patient to take 3 pills." (Didn't I just say that 3 wasn't helping?)
He, too, later claimed that I "never told him" something that was right there in writing on the lengthy form that I was told to fill out and bring to the appointment. I spent a couple precious good hours filling it out, and he never even bothered to read it.
Nonetheless, I now put everything in writing when I need to see a new doctor. A written medical history is mailed in as soon as I make the appointment, and a copy of it is taken to the appointment with me. It's faster for them to read it than to ask questions to elicit the same amount of information, and because it's written, you're the one who controls which direction it goes in – no more you say "sleep a lot" and the doctor immediately hones in on depression, because you're steering him toward the flu-like symptoms, the fever that wouldn't be there if you were just depressed. Moreover, what you told the doctor is right there in writing ... he can't claim "she never told me"; he has to admit "I never read it" or "I didn't pay attention to that part", which makes him the culprit, not you. Similarly, if he tries to twist your words or your medical history to say what supports his desired diagnosis, what you actually told him is right there to prove that he got it wrong.
Trust no one. Document everything. Mail out only photocopies – keep the originals – paperwork they don't like has a habit of "getting lost" or "lost in the mail", so you can easily provide an additional copy if you have the original. Doctors and judges are not there to help you, and should be treated with suspicion.
Probably the best thing you can do if you're applying for SSDI is to take a tape recorder to your medical appointments. "This is Patty Patient. It's 2:30 PM on May 1, 2009 and I am having an appointment with Dr. David Dimwit. Go ahead, Doctor." Then have someone else transcribe the tape (with a sworn certification of accuracy), attach copies of everything you gave the doctor in writing, and copies of his chart notes/written report, and then there's no way he can claim you said something you didn't (or didn't say something you did). Highlight any inconsistencies between what you actually said and what he says you said. Offer the judge the original tape recording. Then there's no question who's lying about what was said during the appointment when the doctor tries to claim you never told him you physically can't do what he's trying to blame on being too depressed to try.
My judge, inauspiciously, chooses to believe every word in the medical records is true and every word of my testimony is false – if the doctor says I told him I've been on anti-depressants most of my life, then that's what I said. But having good records of your own, including transcripts of appointments, may help convince the Court of Appeal that the doctor and the judge are the ones who are lying, not you.

What we see depends mainly on what we look for. ~ Sir John Lubbock

And, unfortunately, most people, when dealing with CFS, are looking for signs of depression rather than signs of a physical condition. They get so hung up on the "fatigue" that they ignore all the neurological and immunological abnormality, and apply unreasonable/unreachable standards that would never ever be applied to someone seeking Disability benefits for the near-twin illness MS.







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