Draft of letter to CFSAC: feedback appreciated!

zoe.a.m.

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I'm just about senseless after having worked on this the past few days and I don't have it within me to proofread it and trust that I'll catch the errors. Any info or feedback would be great. I feel that other's letters are so fantastic and I can't evaluate whether mine will be helpful or just confusing.
Thanks

To the CFSAC committee for October 29, 2009.

I would like to convey my concern over the CDC's definition, classification and research attitudes toward the illness that it has termed Chronic Fatigue Syndrome.

I presume that one of the main functions of the CDC's involvement in CFS is to inform practitioners throughout the US about this fairly-new condition and to aid them in learning about its diagnosis and treatments. If anything, it appears that the static nature of the CDC's research and available information makes these practitioners less confident about what they are seeing clinically (i.e. that this illness is far more than fatigue and a matter of "unwellness"). This is distressing for both patient and doctor. I personally do not subscribe to the idea that doctors will study this illness on their own time (given that I have been the 19th patient my doctor has seen in a day), nor should it be expected that medical professionals will go out of their way to speak up about what they are observing firsthand when it is viewed as unscientific by government and health care agencies. The incredible amount of misinformation about CFS shows itself in every doctors office, emergency room, behavioral health office and with almost every member of the population that I have come in contact with.

The news in this past week released from the Whittemore Peterson Institute has led many like myself, and those close to them, to feel hopeful that although a causative agent or pathogenesis may still be far away, that progress is at long last being made. It's easy to think that people suffering with CFS would be 'ripe for the picking' in terms of "news" on this topic; however, I believe I can speak for many when I say that what we wish for is continued research at a level commensurate to our illness--not easy answers.

Yesterday, I read Dr. William Reeves' comments in The New York Times article Is a Virus the Cause of Fatigue Syndrome? He states, in response to the Whittemore Peterson Institutes recent findings, that If we validate it, great. My expectation is that we will not. This statement gives the appearance that the CDC has little interest in clinical observation or research of CFS patients (done by other agencies and researchers), and more in stating what it believes will be the facts in the years to come. Perhaps I am idealistic as I have been raised on the science of individuals like Richard Feynman, but objectivity must remain the foremost goal. I believe we must hold the CDC's scientists, researchers and spokespeople to this same standard. Otherwise, all of the information they produce could and should be considered suspect, or arbitrary at best.

Another concern is the CDCs criteria (i.e. the empirical definition) which has been in identifying patients with CFS. This definition excludes the debilitating mark of this illness, post-exertional fatigue, and includes emotional factors and patients who have only a low level of fatigue. This only serves to further confuse patients and medical professionals, and again, does not address the known immune system, SPECT scan, and MRI abnormalities that are routinely found in patients diagnosed with CFS. The empirical definition furthers what many feel has become the agenda of those such as Dr. Reeves and others within the CDC: that CFS is primarily a psychiatric disorder which is best treated with GET (graded exercise therapy) and CBT (cognitive behavioral therapy). I am utterly confused by the adherence to these beliefs when patients who undergo these therapies are not cured, put into remission, or even moderately improved. Also, t is not only doctors who struggle to know how to appropriately treat and listen to CFS patients; this is a problem for psychiatrists, psychologists, and therapists as well, and is too often overlooked. When mental health professionals are also led to believe that CFS is, at its roots, a mental or emotional disorder, they often feel as though they fail to improve patients. The results of these feelings of failure to treat what the CDC terms "unwellness" (and not a multi-systemic, neurological and immunological disease) is too often a marginalization of the patient. This confusion spurs nothing but self-doubt, suspicion, and upset over the apparent inability to improve for both practitioner and patient.

In terms of emotional and stress-related factors in physical illness, I cannot think of an informed individual who would deny these as important in the onset and course of a physical illness, neither though can I imagine singling out only one illness for which these factors are the pathogenesis, predicted course, and reason for failure to respond to treatment. There is a field of medicine already in existence which will continue to research psychological and emotional factors in disease processes: psychoneuroimmunology. This field has provoked enough interest and research that I feel confident that the CDCs CFS research need not try to overlap.

Through my reading over the years, I was surprised to find that the disease we know as Multiple Sclerosis has a history of being falsely identified and classified as a psychiatric disorder until 1984. I found this very surprising as I've never heard an MS patient speak of this history, nor do I hear anyone--professional or layperson--speak about MS in a derisive or minimizing manner. I do not think it most important to lay blame, but that researchers and medical professionals be informed by this experience so that further unnecessary suffering due to medical ignorance can be spared. Ultimately, there is a great deal of crossover between conditions that we now know to be neurologic and those that are psychiatric, but, alas, they are important in different ways.

Given what little the CDC has pursued or managed to prove regarding CFS, I would think it is time for a new approach. If the CDC wishes to cling to its empirical definitions standard (though it most certainly further confuses matters by including what would be millions with what some might consider a clear psychiatric disorder as overlapping patients who have clear neurological and immune system dysregulation), I believe that the title of CFS can no longer accurately describe the latter. I believe Reeves' doubts of replicating the Whittemore Peterson Institute's results is well founded if the CDC's current definition of CFS should define further study parameters. Many have argued for some time that the Canadian definition of CFS should be adopted in order to clarify what has become a catch-all diagnosis; I agree that this matter should be further analyzed.

As problematic as the CDCs fuzzy definition is the continued use of the name Chronic Fatigue Syndrome. I can personally attest to my own medical practitioners confusion over how I could have a diagnosis as relatively benign as CFS when the course of my illness rivals their patients with HIV, hepatitis, multi-system-organ failure and aggressive forms of MS. As many of these symptoms are noted in the Canadian definition and in patients of doctors such as Bell, Peterson, Cheney, etc., why are they non-existent in the CDCs description of this illness?

To further complicate matters, the confusion and unease of what it means to be diagnosed with CFS creates a myriad of problems within families, relationships, and while trying to find a means to live with a very expenisive illness. Many with CFS spend years fighting for Social Security Disability only to eventually receive it and find that its health benefits do not cover the recommended courses of treatments. I personally applied to be seen at the Chronic Fatigue Syndrome Clinic located at the Harborview Medical Center in Seattle, WA (a 4-hour trip from where I am located) only to find that this clinics treatments and recommendations are for therapy (to address the incredible stresses involved with living with a chronic, debilitating illness), acupuncture and herbal medicine on a weekly or bi-weekly basis (at a cost of approximately $70-$90 per session without herbs), and a number of supplements (many of which are some of the most expensive on the market today). Who will cover the cost of such treatments? I have been fortunate to have been supported by family members for close to 10 years, but the stress of this is unimaginable and there remains what I would describe as a cloud of doubt due to their confusion over If this illness is this serious, why wouldnt we know? Why wouldnt it be common knowledge? I cannot answer this for them.

While it is true that the Whittemore Peterson Institute's research is new, so much has been achieved with relatively little funding and with very little time that I feel confident that, had the CDC managed its CFS budget appropriately and had a clear chohort to study with clear parameters, we could be decades ahead of where we now are. While it's perhaps normal for Dr. Reeves to openly criticize anothers work in this area, he should not do so with such amibition when he has achieved relatively little with a considerable amount of funding, time and manpower.

There is a saying: "when you are a hammer, everything looks like a nail." I believe this speaks to the CDC's record of research and published information on CFS and their apparent adherence to the belief that CFS is either a psychiatric or psychological disorder with the expected limited treatments. In the US, there is ongoing attention being paid to the importance of eliminating policies and misinformation that further the disenfranchisement, marginalization, and stigmatization of individuals. All I ask is that the government agency leading the study and research of CFS works to do the same.

Thank you for your time and consideration.
 

zoe.a.m.

Senior Member
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Location
Olympic Peninsula, Washington
Thanks Caledonia! I think I've been in a vacuum with this, and ironically, more sick than I have been in months when trying to write it. Just posting it here helped me see mistakes right away.

I looked up some info on Reeves and it seems like he has a strange history with CFS--being a whistleblower over the financial improprieties--but oddly attached to the amygdala-type theory. I don't doubt the improvements people make with that training, but why work for the CDC if that's your area of interest?!?!?

I just hope all the letters received are read!
 

Jerry S

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Excellent letter!

Thanks for making the tremendous effort to write it. It's really beautiful and hit all the right notes. I'm a big Richard Feynman fan, too, and it was nice to see him mentioned.
 

kolowesi

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zoe Testimony letter

Awesome, Wonderful, Spectacular. Send it off to them, they need this one!

You are very tactful and articulate. Many important points, explained so well.

Would you send this to the NY Times as well? Maybe they would print it.

Thank you so much. Hope you are sleeping:) Don't miss the deadline though!

Kelly
 

Dolphin

Senior Member
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I'm just about senseless after having worked on this the past few days and I don't have it within me to proofread it and trust that I'll catch the errors. Any info or feedback would be great. I feel that other's letters are so fantastic and I can't evaluate whether mine will be helpful or just confusing.

To the CFSAC committee for October 29, 2009.

I would like to convey my concern over the CDC's definition, classification and research attitudes toward the illness that it has termed Chronic Fatigue Syndrome.

I presume that one of the main functions of the CDC's involvement in CFS is to inform practitioners throughout the US about this fairly-new condition and to aid them in learning about its diagnosis and treatments. If anything, it appears that the static nature of the CDC's research and available information makes these practitioners less confident about what they are seeing clinically (i.e. that this illness is far more than fatigue and a matter of "unwellness"). This is distressing for both patient and doctor. I personally do not subscribe to the idea that doctors will study this illness on their own time (given that I have been the 19th patient my doctor has seen in a day), nor should it be expected that medical professionals will go out of their way to speak up about what they are observing firsthand when it is viewed as unscientific by government and health care agencies. The incredible amount of misinformation about CFS shows itself in every doctors office, emergency room, behavioral health office and with almost every member of the population that I have come in contact with.

The news in this past week released from the Whittemore Peterson Institute has led many like myself, and those close to them, to feel hopeful that although a causative agent or pathogenesis may still be far away, that progress is at long last being made. It's easy to think that people suffering with CFS would be 'ripe for the picking' in terms of "news" on this topic; however, I believe I can speak for many when I say that what we wish for is continued research at a level commensurate to our illness--not easy answers.

Yesterday, I read Dr. William Reeves' comments in The New York Times article Is a Virus the Cause of Fatigue Syndrome? He states, in response to the Whittemore Peterson Institutes recent findings, that If we validate it, great. My expectation is that we will not. This statement gives the appearance that the CDC has little interest in clinical observation or research of CFS patients (done by other agencies and researchers), and more in stating what it believes will be the facts in the years to come. Perhaps I am idealistic as I have been raised on the science of individuals like Richard Feynman, but objectivity must remain the foremost goal. I believe we must hold the CDC's scientists, researchers and spokespeople to this same standard. Otherwise, all of the information they produce could and should be considered suspect, or arbitrary at best.

Another concern is the CDCs criteria (i.e. the empirical definition) which has been in identifying patients with CFS. This definition excludes the debilitating mark of this illness, post-exertional fatigue, and includes emotional factors and patients who have only a low level of fatigue. This only serves to further confuse patients and medical professionals, and again, does not address the known immune system, SPECT scan, and MRI abnormalities that are routinely found in patients diagnosed with CFS. The empirical definition furthers what many feel has become the agenda of those such as Dr. Reeves and others within the CDC: that CFS is primarily a psychiatric disorder which is best treated with GET (graded exercise therapy) and CBT (cognitive behavioral therapy). I am utterly confused by the adherence to these beliefs when patients who undergo these therapies are not cured, put into remission, or even moderately improved. Also, t is not only doctors who struggle to know how to appropriately treat and listen to CFS patients; this is a problem for psychiatrists, psychologists, and therapists as well, and is too often overlooked. When mental health professionals are also led to believe that CFS is, at its roots, a mental or emotional disorder, they often feel as though they fail to improve patients. The results of these feelings of failure to treat what the CDC terms "unwellness" (and not a multi-systemic, neurological and immunological disease) is too often a marginalization of the patient. This confusion spurs nothing but self-doubt, suspicion, and upset over the apparent inability to improve for both practitioner and patient.

In terms of emotional and stress-related factors in physical illness, I cannot think of an informed individual who would deny these as important in the onset and course of a physical illness, neither though can I imagine singling out only one illness for which these factors are the pathogenesis, predicted course, and reason for failure to respond to treatment. There is a field of medicine already in existence which will continue to research psychological and emotional factors in disease processes: psychoneuroimmunology. This field has provoked enough interest and research that I feel confident that the CDCs CFS research need not try to overlap.

Through my reading over the years, I was surprised to find that the disease we know as Multiple Sclerosis has a history of being falsely identified and classified as a psychiatric disorder until 1984. I found this very surprising as I've never heard an MS patient speak of this history, nor do I hear anyone--professional or layperson--speak about MS in a derisive or minimizing manner. I do not think it most important to lay blame, but that researchers and medical professionals be informed by this experience so that further unnecessary suffering due to medical ignorance can be spared. Ultimately, there is a great deal of crossover between conditions that we now know to be neurologic and those that are psychiatric, but, alas, they are important in different ways.

Given what little the CDC has pursued or managed to prove regarding CFS, I would think it is time for a new approach. If the CDC wishes to cling to its empirical definitions standard (though it most certainly further confuses matters by including what would be millions with what some might consider a clear psychiatric disorder as overlapping patients who have clear neurological and immune system dysregulation), I believe that the title of CFS can no longer accurately describe the latter. I believe Reeves' doubts of replicating the Whittemore Peterson Institute's results is well founded if the CDC's current definition of CFS should define further study parameters. Many have argued for some time that the Canadian definition of CFS should be adopted in order to clarify what has become a catch-all diagnosis; I agree that this matter should be further analyzed.

As problematic as the CDCs fuzzy definition is the continued use of the name Chronic Fatigue Syndrome. I can personally attest to my own medical practitioners confusion over how I could have a diagnosis as relatively benign as CFS when the course of my illness rivals their patients with HIV, hepatitis, multi-system-organ failure and aggressive forms of MS. As many of these symptoms are noted in the Canadian definition and in patients of doctors such as Bell, Peterson, Cheney, etc., why are they non-existent in the CDCs description of this illness?

To further complicate matters, the confusion and unease of what it means to be diagnosed with CFS creates a myriad of problems within families, relationships, and while trying to find a means to live with a very expenisive illness. Many with CFS spend years fighting for Social Security Disability only to eventually receive it and find that its health benefits do not cover the recommended courses of treatments. I personally applied to be seen at the Chronic Fatigue Syndrome Clinic located at the Harborview Medical Center in Seattle, WA (a 4-hour trip from where I am located) only to find that this clinics treatments and recommendations are for therapy (to address the incredible stresses involved with living with a chronic, debilitating illness), acupuncture and herbal medicine on a weekly or bi-weekly basis (at a cost of approximately $70-$90 per session without herbs), and a number of supplements (many of which are some of the most expensive on the market today). Who will cover the cost of such treatments? I have been fortunate to have been supported by family members for close to 10 years, but the stress of this is unimaginable and there remains what I would describe as a cloud of doubt due to their confusion over If this illness is this serious, why wouldnt we know? Why wouldnt it be common knowledge? I cannot answer this for them.

While it is true that the Whittemore Peterson Institute's research is new, so much has been achieved with relatively little funding and with very little time that I feel confident that, had the CDC managed its CFS budget appropriately and had a clear chohort to study with clear parameters, we could be decades ahead of where we now are. While it's perhaps normal for Dr. Reeves to openly criticize anothers work in this area, he should not do so with such amibition when he has achieved relatively little with a considerable amount of funding, time and manpower.

There is a saying: "when you are a hammer, everything looks like a nail." I believe this speaks to the CDC's record of research and published information on CFS and their apparent adherence to the belief that CFS is either a psychiatric or psychological disorder with the expected limited treatments. In the US, there is ongoing attention being paid to the importance of eliminating policies and misinformation that further the disenfranchisement, marginalization, and stigmatization of individuals. All I ask is that the government agency leading the study and research of CFS works to do the same.

Thank you for your time and consideration.

Thanks
Well done - lots of good points/points I like.

A few typos if it's not too late:
"Another concern is the CDCs criteria (i.e. the empirical definition) which has been in identifying patients with CFS." - think you need a verb like "used" after "been"

"t is not only doctors" - add i

"expenisive" - should be expensive

Don't feel you have to do this if you don't want:
"This definition excludes the debilitating mark of this illness, post-exertional fatigue,"
- the following is probably more accurate:
"This definition does not require the debilitating mark of this illness, post-exertional fatigue,"
 

zoe.a.m.

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Location
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Thank you for the specific suggestions Tom--I caught the typos in time (but had sent it before I saw your excellent comment about the "post-exertional" change. Kelly, thank you for the encouragement. I can't imagine sending it to The Times; do people really do that? Thank you too sarahg! Did you get to do official testimony? That is pretty exciting if so. Thanks as well Jerry! Great to hear you're a Feynman fan. I wished I could have been more specific (like a nice quote about research/objectivity, because he has many), but I just tried to channel the way he always seemed to speak as though doing the right thing was the obvious choice.

I actually sent this off at 5:30 am and CFSAC sent me a reply email so I know that it was received and now I can hopefully go to bed by 5:30 pm!

I look forward to getting more familiar with the forums; it's a lot to take in at first though!
 

Jody

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zoe.a.m.

I'm here late in the game but I wanted to add my encouragement to you for what you've written.

You did well.

And, a belated welcome to the forums, zoe.a.m. :)