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Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Martlet
Senior Member
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I hope you turn out to be right. Imagine how much easier it would be for doctors - and patients - to find a small abnormality on routine testing and then on that basis to know whether to run an XMRV test. I was wondering where you were finding a silver lining in this cloud. Thanks for clarifying.
Wouldn't it just! Thanks for reading!!!
Hysterical Woman
Senior Member
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Thanks for letting us know, thefreeprisoner!!
BTW, you can go to the bottom of Parvo's letter and click on "Recommended" and it will add your vote!!
Cool!
Maxine
Thanks Maxine ~ I've been counted!
T
thefreeprisoner
Guest
Yep, mine was vote number 14...
Rachel xx
Rachel xx
Dr. Yes
Shame on You
- Messages
- 868
Forgive me people, for my brain is fried 
and I ramble on when that happens.. I hope this makes sense; of course by the time I managed to write it all I figure the conversation has moved off some place else :worried: , but...
Orla and Froufox,
I agree with you that exclusion based on very routine tests does not exclude most ME/CFS patients, though we could still make an argument that he is not abiding by anything resembling Fukuda by doing that, and was thus biased toward psychiatric patients. That perhaps is discrediting enough. But what concerns me is that they were vaguer than that; they said INCLUDING the following tests.. they did not list all of them.
"All patients had undergone medical screening to exclude detectable organic illness*, including a minimum of physical examination, urinalysis, full blood count, urea and electrolytes, thyroid function tests, liver function tests, 9 a.m. cortisol and ESR. Patients were interviewed using a semi-structured interview for CFS [9] (Ed: anyone know what that is?) to determine whether they met international consensus criteria for CFS. (Ed: which one??)"
(*note they did not say that they were only excluding organic illness that could account for the patient's whole illness. That would require alternative diagnoses. As I go into below, I don't think Wessely did that. It certainly sounds like they're talking about removing any patients with abnormal findings such as abnormal blood work.)
I suppose it's possible that they would simply lie if asked, but if a scientist in the field (from, say, the CAA) asked, they would have to be concerned that they may eventually be asked to produce more detailed information about the cohort, much as the WPI was asked. So their response would be more careful, and I hope more revealing (especially in what it might leave out).
From Loldershaw-
We would not need to ask this if Wessely had simply made clear that he used the Fukuda physical criteria to determine his patient cohort, and that's that - no extra nonsense, nothing. The fact that he did not, but sort of said he did, then said he did other stuff (not to mention making it seem like these were recent patients and not stored samples) is either a result of unbelievably stupid writing, or else an attempt to slip it by people that he did NOT in fact use the Fukuda physical criteria. Which would mean, of course, that he may have seriously diluted his cohort. As far as I know, everyone who is trying to replicate the WPI results is using at least the Fukuda criteria; if that's the case (and I hope it is), and Wessely used something closer to the Reeves or Oxford criteria, this study will stick out like a sore thumb.
I'm not saying that this alone would be the reason they found no XMRV. I think (assuming the WPI is right) it's most likely that there was some flaw in their testing protocol. But if we turn out to be correct about the criteria they actually used, this is a major weakness of their study and revealing it would be enough to greatly diminish it in any objective scientist/doctor's eyes.
and I ramble on when that happens.. I hope this makes sense; of course by the time I managed to write it all I figure the conversation has moved off some place else :worried: , but...Orla and Froufox,
I agree with you that exclusion based on very routine tests does not exclude most ME/CFS patients, though we could still make an argument that he is not abiding by anything resembling Fukuda by doing that, and was thus biased toward psychiatric patients. That perhaps is discrediting enough. But what concerns me is that they were vaguer than that; they said INCLUDING the following tests.. they did not list all of them.
"All patients had undergone medical screening to exclude detectable organic illness*, including a minimum of physical examination, urinalysis, full blood count, urea and electrolytes, thyroid function tests, liver function tests, 9 a.m. cortisol and ESR. Patients were interviewed using a semi-structured interview for CFS [9] (Ed: anyone know what that is?) to determine whether they met international consensus criteria for CFS. (Ed: which one??)"
(*note they did not say that they were only excluding organic illness that could account for the patient's whole illness. That would require alternative diagnoses. As I go into below, I don't think Wessely did that. It certainly sounds like they're talking about removing any patients with abnormal findings such as abnormal blood work.)
I suppose it's possible that they would simply lie if asked, but if a scientist in the field (from, say, the CAA) asked, they would have to be concerned that they may eventually be asked to produce more detailed information about the cohort, much as the WPI was asked. So their response would be more careful, and I hope more revealing (especially in what it might leave out).
From Loldershaw-
What they mean by it is part of what needs to be clarified. What do they (or Reeves, for that matter) mean by "organic disease", i.e. how did they screen for it? Normal procedure using Fukuda is only to screen out those who have certain diagnoses that can explain the major features of the disease. Since I doubt (especially based on what Orla said) that they did an extensive workup on any of these patients, I also have to doubt that they were able to make proper exclusionary diagnoses. So what criteria for organic disease did they use to exclude patients? If the patients had prior diagnoses for organic illnesses that are exclusionary, they wouldn't be at Wessely's clinic in the first place. So what were they checking for? Did he exclude patients for having organic disease symptoms? When were the exclusions done? Apparently the samples taken were not originally planned for this study, but rather stored blood samples by which Wessely would somehow have had to make sure his selection criteria were met (based on reviewing the patients' charts alone, I would assume).
We would not need to ask this if Wessely had simply made clear that he used the Fukuda physical criteria to determine his patient cohort, and that's that - no extra nonsense, nothing. The fact that he did not, but sort of said he did, then said he did other stuff (not to mention making it seem like these were recent patients and not stored samples) is either a result of unbelievably stupid writing, or else an attempt to slip it by people that he did NOT in fact use the Fukuda physical criteria. Which would mean, of course, that he may have seriously diluted his cohort. As far as I know, everyone who is trying to replicate the WPI results is using at least the Fukuda criteria; if that's the case (and I hope it is), and Wessely used something closer to the Reeves or Oxford criteria, this study will stick out like a sore thumb.
I'm not saying that this alone would be the reason they found no XMRV. I think (assuming the WPI is right) it's most likely that there was some flaw in their testing protocol. But if we turn out to be correct about the criteria they actually used, this is a major weakness of their study and revealing it would be enough to greatly diminish it in any objective scientist/doctor's eyes.
K
kim500
Guest
ashes: Right.
everyone: Read the paper. There were no 'healthy controls' included or excluded, with or without XMRV, before or after testing, because there were *no healthy controls*. Nothing to wrap our brains around there. Their control was *water*, not people. Hello, water? Given the chest-thumping about this study and the momentous claims it makes against the WPI-CC-NCI paper, that in itself is bizarre. Recall too that they used all stored samples, taken from patients at SW's pseudo-CFS psychiatric clinic at least two years ago (cohort of samples used in two other cited studies, dated 2007 and 2009; cf. notes 11-12), long before Mikovits' XMRV discovery. Granted, theoretically, SW could have rescreened samples from that cohort in October and November and discarded any that tested even faintly for XMRV, but that seems doubtful to me - he wouldn't have the ability to do that himself anyway (not a virologist, remember... although, now that I write that, it comes to mind that he does have certain pals known to us all who are virologists, some guy in Atlanta, WR, if I recall correctly... man, that would be diabolical). Either way, we do know that given his definition of CFS as a somatoform disorder/ mental health disease with no biomarkers, he didn't supply his Imperial College co-authors with real ME-CFS patient samples anyway.
I feel a bit sorry for McClure and her IC colleagues - they may not have suspected a manipulated patient cohort and tested it, however odd their procedure, in good faith. Or not.
Maybe #1 should be amended to read something like, "There is absolutely no xmrv in the peripheral blood mononuclear cells of anyone in the UK," or ... (I can't remember exactly where they looked, but it wasn't for example, epithelial cells."
I agree that the most likely explanation is a huge discrepancy in methodology but, given there were no controls and given the cohort had been screened for a number of findings it is not unthinkable that something excluded in that screening mechanism could also, because of some connection of which we are unaware, indicate infection with XMRV and account for a 0 result.
ETA I am suggesting something unknown to SW. Everyone could have some small abnormality of unknown importance which caused him to reject the subject without ever knowing it was a key piece of the puzzle.
Yea, I'm hypothesizing my socks off here but it's very logical. I am seldom this logical - I have to revel in it.
Dr. Yes
Shame on You
- Messages
- 868
ETA I am suggesting something unknown to SW. Everyone could have some small abnormality of unknown importance which caused him to reject the subject without ever knowing it was a key piece of the puzzle.
Yea, I'm hypothesizing my socks off here but it's very logical. I am seldom this logical - I have to revel in it.
I think you're always logical!Your point is yet another reason to want to know the exact physical exclusionary criteria they used. If other groups find XMRV, it may be revealing to look at the patient cohorts/ selection processes of the groups that did not. Of course, there would always be the possibility that they ran their tests wrong, and that would make it much harder to draw any conclusions on the patient abnormalities themselves. I suppose they could be re-tested at a lab that did find XMRV, or..or...
That's it, my brain needs a :sofa:
anne_likes_red
Senior Member
- Messages
- 1,103
discrepancies
Can we suppose the discrepancy is related to the discrepancy between the results here (modest sample size though it is) of the Cooperative diagnostics test to the VIP dx ones?
Is it, as Nancy Klimas predicted, simply a case of "our way is right!" vs "our way is right!" ? And who will decide which way is right?
Can we suppose the discrepancy is related to the discrepancy between the results here (modest sample size though it is) of the Cooperative diagnostics test to the VIP dx ones?
Is it, as Nancy Klimas predicted, simply a case of "our way is right!" vs "our way is right!" ? And who will decide which way is right?
parvofighter
Senior Member
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- 440
- Location
- Canada
A COOL response on PLoS. And Thanks!
Hello again! I just took a look at the PLoS site again, and there is a very, very interesting post in response to mine, that takes the critique of Imperial's science to yet another level. OOOoooohh, I'm having so much fun seeing good science, intelligent discussion - and downright dissection of Wesseley et al's haphazard, manipulative, approach to ME/CFS science. I truly believe we are seeing an end of an era. This is like the Berlin Wall - and yes, it may take time, but the cracks are definitely showing! And with the kind of analysis that a bunch of sick folks like us can do, NOTHING can stop us.
From: http://www.plosone.org/annotation/l...notation/36cf0541-c351-4ee0-9c84-97b594d867b7
Herbiv4 replied to Science-Based on 07 Jan 2010 at 14:13 GMT
Pay Attention To The Data Set
Thu Jan 07 04:52:29 GMT 2010 by Mary M. Schweitzer, Ph. D.
There is an old saying in computerized statistics: GIGO. It means garbage in-garbage out - the study is only as good as the data set. In this case, the data set came from patients diagnosed with a version of CFS that is entirely psychiatric. Simon Wessely, one of the co-authors, has stated numerous times that he believes the disease to be a type of neurosis once called "neurasthenia" ("the vapors," a "nervous condition," a "nervous breakdown").
Two more of the seven authors on this study work with Wessely at Kings College, London. Wessely once told a patient with neurally mediated hypotension (suggested as a cause or contributing factor in JAMA, fall 1995) that she could not possibly have CFS because all patients with physically explainable symptoms would have been weeded out before they reached his clinic for diagnosis. Makes for a tautology, then, if there are no physical abnormalities in his patients.
Kings College, London, follows the theory that patients with CFS hold "inappropriate illness beliefs," and they have to re-learn that (1) they are well, through cognitive behaviour therapy (CBT), and (2) they can be reconditioned, through graded exercise therapy (GET) - and then they can happily go back to work and family.
These theories have sent children and even adults to foster care or psychiatric hospitals for the sin of having "chronic fatigue syndrome."
The Kings College picture of CFS can be viewed on their website, at <http://www.kcl.ac.uk/proj...>
If you are pressed for time, read the section called "Letting go of support," at
<http://www.kcl.ac.uk/proj...>
The fact of the matter is that patients so diagnosed do not have the disease that was studied at the Whittemore-Peterson Institute. Most likely, they have a form of depression.
A great deal of useful resarch into biomedical markers and viruses has been conducted using the Fukuda definition for CFS (CDC, 1994). Wessely, White, Sharpe, Cleare, Chalder, et al, however, originally rejected the Fukuda definition, substituting instead a definition that did not include any physical symptoms but allowed depression. The result, not unsurprisingly, is that most of their patients suffer from some form of depression. (Ironically, the jury is still out on whether CBT/GET even helps the depressed patients.)
In this article, however, the researchers claimed to have used the U.S. CDC Fukuda definition. The definition requires six months of debilitating fatigue plus four our of eight possible physical symptoms. If the correct symptoms are chosen, particularly if interpreted more generally, it is possible to make depressed patients look like they fit the Fukuda definition.
Note what happens if you use the following:
- Six months of fatigue
- Headaches
- Sleep abnormalities
- General aches and pains
- Distraction or confusion
Who needs a retrovirus when "CFS" can be so easily "cured"? According to Kings College, "Our routine treatment is cognitive behaviour therapy ... Some individuals receive CBT over the telephone if they live a long way from the unit or find travelling difficult."
The patients who have tested positive for XMRV in the Mikovits et al studies have very different medical histories. Most have other diagnosed medical conditions - including, but not limited to, Coxsackie B, Adenovirus 4, HHV-6 (Variant A), recurring EBV, HHV-7, cytomegalovirus, chlamydia pneumonae, mycoplasma. Many of them have a nonexistent natural killer cell function, a viral antibody truncated in half (the 37kDa Rnase-L), and/or inverted T-cell ratios. Some who have been sick for decades have developed myocarditis, stem cell cancer, Burkett's lymphoma - and of these, too many have already died.
What on earth do the King's College clinic's patients have in common with those of Dan Peterson at Incline Village, NV? Only the name "chronic fatigue syndrome." There is no shared meaning.
For a true evaluation of the XMRV research, it's necessary not only to follow the process precisely, but also to use a comparable data set. This data set has absolutely nothing in common with the one used by the WPI, NCI, and Cleveland.
And that is what is meant by the old saying, GIGO.
Reviewers of research for publication must pay more attention to the data sets being used. The results mean nothing if you are comparing apples to oranges.
It is also well past time that political entities charged with the health and well-being of the public ALSO pay attention to the way research has been constructed, not just the abstract or the final paragraph.
Without consistency, there is no science. Only opinions.
Mary M. Schweitzer, Ph.D.
No competing interests declared.
OK now, I'm a Luddite. Who is this wonderful Dr Schweitzer!
And BTW, thanks Jenny, Koan, Lisag, Countrygirl, Weldman, Fresheyes, thefreeprisoner, and of courseIslandfinn for the lovely group hug.
When I'm pissed (mad, not drunk), I write like a demon possessed! Oh GOD, those years of despair when I thought I was alone. I am so appreciative of the psychic gift of this forum - and the turbo-charged analytics! Go science, GO!
Hello again! I just took a look at the PLoS site again, and there is a very, very interesting post in response to mine, that takes the critique of Imperial's science to yet another level. OOOoooohh, I'm having so much fun seeing good science, intelligent discussion - and downright dissection of Wesseley et al's haphazard, manipulative, approach to ME/CFS science. I truly believe we are seeing an end of an era. This is like the Berlin Wall - and yes, it may take time, but the cracks are definitely showing! And with the kind of analysis that a bunch of sick folks like us can do, NOTHING can stop us.
From: http://www.plosone.org/annotation/l...notation/36cf0541-c351-4ee0-9c84-97b594d867b7
Herbiv4 replied to Science-Based on 07 Jan 2010 at 14:13 GMT
Pay Attention To The Data Set
Thu Jan 07 04:52:29 GMT 2010 by Mary M. Schweitzer, Ph. D.
There is an old saying in computerized statistics: GIGO. It means garbage in-garbage out - the study is only as good as the data set. In this case, the data set came from patients diagnosed with a version of CFS that is entirely psychiatric. Simon Wessely, one of the co-authors, has stated numerous times that he believes the disease to be a type of neurosis once called "neurasthenia" ("the vapors," a "nervous condition," a "nervous breakdown").
Two more of the seven authors on this study work with Wessely at Kings College, London. Wessely once told a patient with neurally mediated hypotension (suggested as a cause or contributing factor in JAMA, fall 1995) that she could not possibly have CFS because all patients with physically explainable symptoms would have been weeded out before they reached his clinic for diagnosis. Makes for a tautology, then, if there are no physical abnormalities in his patients.
Kings College, London, follows the theory that patients with CFS hold "inappropriate illness beliefs," and they have to re-learn that (1) they are well, through cognitive behaviour therapy (CBT), and (2) they can be reconditioned, through graded exercise therapy (GET) - and then they can happily go back to work and family.
These theories have sent children and even adults to foster care or psychiatric hospitals for the sin of having "chronic fatigue syndrome."
The Kings College picture of CFS can be viewed on their website, at <http://www.kcl.ac.uk/proj...>
If you are pressed for time, read the section called "Letting go of support," at
<http://www.kcl.ac.uk/proj...>
The fact of the matter is that patients so diagnosed do not have the disease that was studied at the Whittemore-Peterson Institute. Most likely, they have a form of depression.
A great deal of useful resarch into biomedical markers and viruses has been conducted using the Fukuda definition for CFS (CDC, 1994). Wessely, White, Sharpe, Cleare, Chalder, et al, however, originally rejected the Fukuda definition, substituting instead a definition that did not include any physical symptoms but allowed depression. The result, not unsurprisingly, is that most of their patients suffer from some form of depression. (Ironically, the jury is still out on whether CBT/GET even helps the depressed patients.)
In this article, however, the researchers claimed to have used the U.S. CDC Fukuda definition. The definition requires six months of debilitating fatigue plus four our of eight possible physical symptoms. If the correct symptoms are chosen, particularly if interpreted more generally, it is possible to make depressed patients look like they fit the Fukuda definition.
Note what happens if you use the following:
- Six months of fatigue
- Headaches
- Sleep abnormalities
- General aches and pains
- Distraction or confusion
Who needs a retrovirus when "CFS" can be so easily "cured"? According to Kings College, "Our routine treatment is cognitive behaviour therapy ... Some individuals receive CBT over the telephone if they live a long way from the unit or find travelling difficult."
The patients who have tested positive for XMRV in the Mikovits et al studies have very different medical histories. Most have other diagnosed medical conditions - including, but not limited to, Coxsackie B, Adenovirus 4, HHV-6 (Variant A), recurring EBV, HHV-7, cytomegalovirus, chlamydia pneumonae, mycoplasma. Many of them have a nonexistent natural killer cell function, a viral antibody truncated in half (the 37kDa Rnase-L), and/or inverted T-cell ratios. Some who have been sick for decades have developed myocarditis, stem cell cancer, Burkett's lymphoma - and of these, too many have already died.
What on earth do the King's College clinic's patients have in common with those of Dan Peterson at Incline Village, NV? Only the name "chronic fatigue syndrome." There is no shared meaning.
For a true evaluation of the XMRV research, it's necessary not only to follow the process precisely, but also to use a comparable data set. This data set has absolutely nothing in common with the one used by the WPI, NCI, and Cleveland.
And that is what is meant by the old saying, GIGO.
Reviewers of research for publication must pay more attention to the data sets being used. The results mean nothing if you are comparing apples to oranges.
It is also well past time that political entities charged with the health and well-being of the public ALSO pay attention to the way research has been constructed, not just the abstract or the final paragraph.
Without consistency, there is no science. Only opinions.
Mary M. Schweitzer, Ph.D.
No competing interests declared.
OK now, I'm a Luddite. Who is this wonderful Dr Schweitzer!
And BTW, thanks Jenny, Koan, Lisag, Countrygirl, Weldman, Fresheyes, thefreeprisoner, and of course
Islandfinn for the lovely group hug. When I'm pissed (mad, not drunk
), I write like a demon possessed! Oh GOD, those years of despair when I thought I was alone. I am so appreciative of the psychic gift of this forum - and the turbo-charged analytics! Go science, GO!
anne_likes_red
Senior Member
- Messages
- 1,103
Parvo - here's a link to some of her ME-CFS essays
http://www.cfids-me.org/marys/essays.html
PS I'll have one of what you're having!
http://www.cfids-me.org/marys/essays.html
PS I'll have one of what you're having!
Hysterical Woman
Senior Member
- Messages
- 857
- Location
- East Coast
Parvo/Mary Schweitzer
Hi Parvo,
You will get a good idea of what Mary is about if you read her essays. She has been fighting for all CFS people for years. She was a professor in Philadelphia when she became ill. She is from my neck of the woods and would sometimes attend the support group I ran in Delaware 1997-99. She was also receiving ampligen at the same time I was - I was getting it thru clilnical trials, she was getting it in treatment.
She has had huge ups and downs in her health, but thru it all she has always tried to support the community as best she can. Many of her essays are right on the money. I was especially impressed with the one she did about, well, money. She was smart enough to write about what the financial cost of CFS is to the people who have it, insurance companies, the governement, etc, and how much revenue is lost from people who can no longer work. I had hoped that it would get more government attention because of constructing it in that way, but I don't think it did. I might be wrong here, tho, if anyone knows of an impact it made somewhere it would be nice to hear that.
I was concerned when I heard that Mary did not actively participate in the last CFSAC meeting in D.C. She has at times been a vibrant participant there. I vividly remember one cold May 12th day in D.C. seeing Mary loudly addressing a group of us to fight for the protection of CFS patients. However, during the last CFSAC meeting she did not make a presentation, but did enter a statement in the record. I believe Cort made the comment that she was once again in a wheelchair and not very vocal during the meetings. I haven't spoken to her recently and I hope that she is hanging in there.
It would be nice if she would join this forum.
Congrats again Parvo on your letter, you are an inspiration
Maxine
Hi Parvo,
You will get a good idea of what Mary is about if you read her essays. She has been fighting for all CFS people for years. She was a professor in Philadelphia when she became ill. She is from my neck of the woods and would sometimes attend the support group I ran in Delaware 1997-99. She was also receiving ampligen at the same time I was - I was getting it thru clilnical trials, she was getting it in treatment.
She has had huge ups and downs in her health, but thru it all she has always tried to support the community as best she can. Many of her essays are right on the money. I was especially impressed with the one she did about, well, money. She was smart enough to write about what the financial cost of CFS is to the people who have it, insurance companies, the governement, etc, and how much revenue is lost from people who can no longer work. I had hoped that it would get more government attention because of constructing it in that way, but I don't think it did. I might be wrong here, tho, if anyone knows of an impact it made somewhere it would be nice to hear that.
I was concerned when I heard that Mary did not actively participate in the last CFSAC meeting in D.C. She has at times been a vibrant participant there. I vividly remember one cold May 12th day in D.C. seeing Mary loudly addressing a group of us to fight for the protection of CFS patients. However, during the last CFSAC meeting she did not make a presentation, but did enter a statement in the record. I believe Cort made the comment that she was once again in a wheelchair and not very vocal during the meetings. I haven't spoken to her recently and I hope that she is hanging in there.
It would be nice if she would join this forum.
Congrats again Parvo on your letter, you are an inspiration
Maxine
parvofighter
Senior Member
- Messages
- 440
- Location
- Canada
Dr Schweitzer, PhD - great Business Case background!
I just looked her up - and thanks all for the great links! Dr Schweitzer was an Associate Professor of Economic history - on medical leave due to CFIDS. I just read her article on The True Costs to the Nation of Public Apathy Regarding Chronic Fatigue Syndrome at http://www.cfids-me.org/marys/costs.html . A topic near and dear to my heart - I have an MBA and double Rehabilitation Medicine degrees, and in my earlier career did corporate health strategy consulting, helping organizations capture the full cost of employee health - and helping them make a sustainable business case for being proactive about employee health.
As she notes in her 1998 article, the opportunity costs of CFIDS are massive: THIS is what gets senior executives' attention!
"The 500,000 CFIDS victims, male and female, would thus have been expected to produce $10.1 billion in goods and services this year had they remained healthy. Instead, we can expect them to only produce $2.5 -- a loss of $7.6 billion dollars to the national product. Note: when sick, many of them may receive disability benefits, but that is not counted in national product because it is merely a transfer of income from one group to another, not an increase in total national productivity. Payments for private disability insurance amount to an increase for patients' incomes, but a decrease for the insurance companies; likewise, SSDI payments lower the government's revenues by the same amount they increase the patients'. In both cases, on a national level it is a washout: a zero sum. What we were interested in here was the concept of productivity: goods and services that could have been added to the national out put had these people been well.
Since our estimates are based upon gross income, we can also assume that roughly one-third of the lost income is lost revenues for the federal government in the form of income taxes. Hence, the devastation wrought by the disease CFIDS upon patients not only costs the nation as a whole over 7.5 billion dollars; it also reduces federal income by $2.5 billion. How penny wise and pound foolish to quibble over a national research allocation of $13 million annually to CFIDS research, when nearly 200 times that much is lost to the federal government annually because this disease is left undiagnosed, untreated, and ignored."
I just looked her up - and thanks all for the great links! Dr Schweitzer was an Associate Professor of Economic history - on medical leave due to CFIDS. I just read her article on The True Costs to the Nation of Public Apathy Regarding Chronic Fatigue Syndrome at http://www.cfids-me.org/marys/costs.html . A topic near and dear to my heart - I have an MBA and double Rehabilitation Medicine degrees, and in my earlier career did corporate health strategy consulting, helping organizations capture the full cost of employee health - and helping them make a sustainable business case for being proactive about employee health.
As she notes in her 1998 article, the opportunity costs of CFIDS are massive: THIS is what gets senior executives' attention!
"The 500,000 CFIDS victims, male and female, would thus have been expected to produce $10.1 billion in goods and services this year had they remained healthy. Instead, we can expect them to only produce $2.5 -- a loss of $7.6 billion dollars to the national product. Note: when sick, many of them may receive disability benefits, but that is not counted in national product because it is merely a transfer of income from one group to another, not an increase in total national productivity. Payments for private disability insurance amount to an increase for patients' incomes, but a decrease for the insurance companies; likewise, SSDI payments lower the government's revenues by the same amount they increase the patients'. In both cases, on a national level it is a washout: a zero sum. What we were interested in here was the concept of productivity: goods and services that could have been added to the national out put had these people been well.
Since our estimates are based upon gross income, we can also assume that roughly one-third of the lost income is lost revenues for the federal government in the form of income taxes. Hence, the devastation wrought by the disease CFIDS upon patients not only costs the nation as a whole over 7.5 billion dollars; it also reduces federal income by $2.5 billion. How penny wise and pound foolish to quibble over a national research allocation of $13 million annually to CFIDS research, when nearly 200 times that much is lost to the federal government annually because this disease is left undiagnosed, untreated, and ignored."