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This blog started out as comments on other people's blogs on the report of the Institute of Medicine (IOM)'s new definition for "ME/CFS" and the new name chosen by this committee - SEID (Systemic Exertion Intolerance Disease). Specifically, this began as a comment to Erica Verillo's thoughtful essay, which can be read here:
http://cfstreatment.blogspot.nl/2015/02/the-iom-report-good-bad-and-absolutely.html
The full IOM report itself is available here:
http://books.nap.edu/openbook.php?record_id=19012
(You can download and save it in PDF form for free, but that may require registering as if you were going to buy it, then downloading it for free when given that option. They are charging $50 for the report in hard copy.)
And a new physician's guideline written by the IOM is available and can be downloaded here:
http://www.iom.edu/~/media/Files/Report%20Files/2015/MECFS/MECFScliniciansguide.pdf
I think the IOM Committee meant well, but I think they failed.
The CFSAC (CFS Advisory Committee) is a Congressionally mandated committee charged with advising the Secretary of Health and Human Services (HHS) on issues related to CFS. In 2004, CFSAC asked that HHS adopt the new Canadian Consensus Criteria (2003), created by a committee of clinicians - many from the US. They were ignored. They kept asking.
A decade later, CFSAC asked HHS to sponsor an OPEN workshop of EXPERTS to UPDATE THE CCC. Instead, HHS paid the IOM $1 million to put together a committee to update the name and definition - but say nothing about treatment. The committee was about half specialist, half amateur.
Why did HHS fail to take the advice of the committee charged by Congress to give it advice - CFSAC? The first failure of the IOM committee was in its very existence. HHS should have listened to CFSAC.
The second great flaw is the failure to discuss treatments. That was mandated in the instructions to the IOM. I wonder why.
British psychiatrists have been recommending a combination of Cognitive Behavior Therapy (CBT) and Graded Exercise Therapy (GET) for two decades, and so does the US CDC. It does not really matter what you call it - if it can be cured by CBT/GET, quite obviously it's not really a physiological disorder.
If the committee's conclusions are accurate, CBT is a waste of time as a "cure." In fact, there is a short discussion of the literature on CBT at the very end of the report, in Appendix C on disability, which concludes there is no research providing evidence that CBT can get patients back to work. But that was not in the body of the report, nor the summary provided the media, nor in the physician's guide that the IOM just released.
If the committee's conclusions are accurate, Graded Exercise Therapy can be downright dangerous - especially if administered as a "cure" by those who do not understand the disease. And especially if in tandem with psychotherapy urging the patient to ignore what the body is saying and adopt a "positive attitude." Post-exertional worsening of symptoms is a hallmark of this disease - that's why they named it SEID (Systemic Exertion Intolerance Disease).
But the committee was FORBIDDEN to discuss treatments, and there is nothing to keep CDC and others from continuing to recommend it. Acquiescing to this "remit" will haunt the committee
forever, and it is the most serious problem with the report. But it will make insurance companies happy.
Now for more specific comments:
1. The name SEID (Systemic Exertion Intolerance Disease) is a train wreck. Yes, they gave us "disease" instead of "syndrome" - but I doubt it will make much difference. "Exertion intolerance" will be viewed by most people - including most in the medical profession - as a fancy way to say CFS. And if you had any doubts, in the flow chart to assist diagnosis that is in both the report and the physician's guideline, the top and defining symptom is ... "Fatigue." (P. 7 of the full IOM report)
If you had any more doubts, the report criticizes AND REJECTS numerous studies because the researchers used healthy people as controls instead of people with "other fatiguing" conditions, or diseases, or complexes, or syndromes, or ... Well, you get the idea. Last time I looked, the correct methodology is to contrast the study group with a control approximating the normal population as best as possible. Why add this new criteria - particularly when NOWHERE in this report is there a list of so-called "fatiguing conditions"?
Yes, for a first pass at a diagnosis, if your definition begins with "fatigue" you want to make sure you are distinguishing the fatigue from this disease from fatigue for other reasons. But ... I thought the new definition didn't focus on fatigue as the prime symptom. Guess I was wrong about that.
And if there are studies that have shown statistically significant differences from a sample of the normal population, a scientific report should have included them, whether or not they also used a control group of patients with "other fatiguing conditions." This is a major failing.
The definition and the summary were failures also because you have to read the full report to see that
they recommend CPET scores to measure PEM, NK cell function to measure the severity of the condition, and a tilt-table test (TTT) or an in-office substitute to test for autonomic dysfunction. Instead, there is a plethora of subjective questionnaires offered.
I do give the physician's guide credit for mentioning these, but in the end they suggest ... Subjective questionnaires for diagnosis.
It would make an enormous difference in both the perception, and the real world treatment, of patients with this disease if objective tests were emphasized. But they waffled at the end. I guess they didn't want to tangle with insurance companies.
2. The committee should have included a list of diseases that need to be ruled out because it is important for them to be treated. That includes Hep C, congestive heart failure, hypothyroidism, hypocortisolism, primary mood disorders, and numerous others. However ...
3. Once such a condition is recognized and treated, if the patient continues to meet the definition for the disease, they can still get a diagnosis. Skipping that interim step will do the patients no favors, and possibly result in numerous misdiagnoses.
4. Once treated, however, most conditions should not be exclusionary. The committee is correct in this - just as a person can have both cancer and hypothyroidism, so too can a patient have both "ME/CFS (SEID)" and hypothyroidism. This is a particularly pertinent example, because research that did not make it into the report provides evidence many patients with a diagnosis of ME or CFS have a chronic viral infection. It is known that many herpesvirus infections (EBV, CMV, HHV-6A) can cause Hashimoto's hypothyroidism. To exclude Hashimoto's (a condition where your own antibodies attack your thyroid) would lead to the exclusion of many patients with chronic viral infections.
5. Instead of offering an unbiased survey of the evidence of chronic viral infections in ME and CFS, the committee stuck to the government line that there are no chronic viral infections except in AIDS. But if you start out by excluding evidence to the contrary, you have created a tautology. Surely they could have examined that evidence, which goes beyond EBV, but added their OPINION - which is what it is - that the disease is not caused by chronic viral infections. Perhaps they should go back and read Popper again on falsifiability and the inability to use statistics to disprove a hypothesis for which it is acknowledged there is evidence, but it is insufficient evidence.
6. Some have called for NMH/POTS and Ehlers-Danlos Syndrome (a hereditary connective tissue disorder) to be exclusionary. But - as the committee correctly noted - there is significant evidence that NMH/POTS and CFS (Fukuda 1994), and NMH/POTS and CCC are correlated. Again, you can treat the NMH/POTS but the patient will still have the disease. The symptoms will be a bit better, however, and it is irresponsible not to try to do something about it. The literature in the correlation goes back to Ramsay's definition of M.E., and a 1995 article in JAMA (the Journal of the American Medical Association). Newer research shows Ehlers-Danlos correlates with NMH/POTS.
7. A patient with depression or anxiety should be treated for depression or anxiety - but if they have the disease, they will still be sick. Furthermore, the incidence of secondary depression is similar to that in MS patients. Of course these patients should be treated!
However, major mood disorders and depression/anxiety are the elephant in the room for this disease. While they are exclusionary for almost every other diagnostic criteria - they are NOT excluded for what is called the "Oxford definition," which consists of six months of debilitating fatigue not caused by a physiological disorder (and was curiously missing from the list of extant definitions.). The Oxford definition underlies a parallel universe of psychiatric papers as numerous as the research on physiological aspects of the disease. These psychiatrists generally do not mention the physiological evidence in their work, and they frequently cite each other, so a novice who is only aware of that research will only know about ... The Oxford definition and the so-called "biopsychosocial" school of British psychiatry.
These psychiatrists peddle CBT/GET as THE cure for what they call "CFS/ME." The CDC's website throws in SSRIs and sleeping pills, but basically echoes the British psychiatric version. That is not a coincidence: leading lights of the British school have all advised the CDC frequently on "CFS" (and often on GWI as well): Simon Wessely, Peter White, Michael Sharpe, Trudie Chalder.
Once again, the failure of the IOM report to directly address the parallel literature in psychiatry, and the problems with CBT and GET, can only be viewed as a great failure. It was nice for them to say "ME/CFS SEID" is not neurasthenia (a diagnosis favored by the British psychiatrists) - but it's a day late and a dollar short.
Most recently, a committee including British "CFS/ME" expert Michael Sharpe succeeded in getting a new condition called "Somatic Symptom Disorder" placed in the new DSM-5, the diagnostic manual of American psychiatry. The definition looks remarkably like a definition for CFS. It starts with complaining about fatigue. And one of the "symptoms" is complaining of four or more physical symptoms! If you weren't careful, a cancer patient could get thrown in this bin.
Therefore, had the committee not been so naïve (I do hope that is the reason), they would have made a strong statement that this disease IS NOT SOMATIC SYMPTOM DISORDER, and IS NOT A SOMATICIZING DISORDER, period. The failure to do so is enormous in the real world of misdiagnoses, mistreatments, patients thrown into mental hospitals against their will, and young people sent to foster care because their "overbearing" parents (and perhaps a "misguided specialist") diagnosed the child with ME or CFS.
8. We ALL - myself included - would prefer for the time being they name the disease after a key researcher such as Melvin Ramsay, or a patient, such as the late, brilliant young Alison Hunter. CDC insists that scientists don't do that any more. So maybe we patients should.
9. When it comes to the disease M.E., which is a distinct illness diagnosed outside the US since 1955 and recognized as neurological by WHO since 1969, the committee did not seem to know what it was. They seemed to think it was a synonym for CFS, just another choice of a name. It is not, and it is not the committee's business to dismiss it. They were charged with examining ME/CFS, but as Leonard Jason eloquently explained in his latest article, that is also a different condition with its own name. (The CCC uses ME/CFS throughout because Canada's version of ICD-10, called ICD-10-CA, placed CFS and M.E. together in the tabular version of ICD-10-CA, adopted by Canada in 2002.). At any rate, I am giving the committee the benefit of the doubt and hoping that these were just typos:
- The committee stated that M.E. and CFS are coded separately in WHO's ICD-10 (p. 27 of the full IOM report). That's not so. That is true of the US version of ICD-10, called ICD-10-CM. It is a major error - period - an error of FACT. ICD-10 codes M.E. in G93.3 in the chapter on neurological disorders (as they have since 1969). If you look at the index (unfortunately unavailable online, but I have a xerox of the appropriate page in the printed index), CFS is also coded to G93.3. Furthermore, André l'Hours of WHO frequently responded in writing to queries from British Parliament as to the proper coding of CFS, stating it belonged in G93.3. (This was during a period when the British psychiatrists were insisting "CFS" was actually neurasthenia and should be coded under psychiatry.). So the committee was FACTUALLY WRONG in stating that WHO's ICD-10 places M.E. and CFS in two different codes.
To be accurate, the US's ICD-10-CM, a clinical modification of ICD-10 due to go into effect in fall 2015, as well as ICD-9-CM, still in effect in the US, both place M.E. under neurology and CFS under "vague signs and symptoms." But that is ONLY in the U.S. It is not the world.
The rest of the world has been using ICD-10 for the past 1-2 decades while the US was still stuck on ICD-9-CM. CFS was never coded in WHO's ICD-9 because shortly after it was adopted on the US, WHO completed their conversion to ICD-10.
- The committee also stated that the Holmes (1988) article introducing CFS and its first definition acknowledged the existence of M.E. (P. 29 of the full IOM report). It did not. You will not find M.E. in the body or the footnotes of the Holmes article.
These were important because if the option of diagnosing M.E. - a separate diagnosis in the US - if the option of diagnosing M.E. had been available and known to the physicians working with cluster outbreaks, they might have chosen THAT diagnosis as more appropriate. The definition of M.E. in Melvin Ramsay's 1986 textbook can be found here (formatted as we are used to seeing definitions, but otherwise unaltered):
http://www.cfids-me.org/ramsay86.html
10. It bears repeating here that another major failing of the report was the frequent criticism of existing studies because they used healthy patients as controls. That is the usual thing to do in medicine. Isn't it? But as much as they said they wanted to downplay fatigue, they insisted that studies of the disease should have compared patients to those with "other fatiguing disorders". They said this about a dozen times, but never listed what they had in mind by "other fatiguing disorders." So once again, methinks they do protest too much.
11. In part because of (10), and in part because of a continuing prejudice in the medical profession against the possibility that a person can have a chronic viral infection (except for AIDS patients), all of the literature on pathogens (except EBV as a possible trigger) and most of the literature on immune system dysfunction was ignored. Did not appear in the report. This amounts to censorship - seriously so, because a finding that a patient has an active viral infection or a serious immune defect can lead to TREATMENT, and in the end, treatment is what these patients need most. Patients do not all test positive for the same conditions (mostly viruses), but there is a considerable body of evidence on chronic infection and this disease. After all, this disease was originally named atypical polio, and it first came to the attention of the public because of a series of cluster outbreaks around the US in the mid-1980s.
The list of pathogens is long, and, to repeat, patients do not all have the same combination: enteroviruses in general, Coxsackie in specific; Human herpesviruses (HHVs): EBV (Epstein-Barr Virus, mono, HHV-4), CMV (HHV-5), HHV-6 Variant A, HHV-7; chlamydia pneumonae; parvovirus; adenovirus; and others. The evidence is there, but because there is so little funding, they tend to be small studies. That they are small, however, cannot be taken to mean they are inaccurate (get your Popper out again, guys). It just means we need more money for research. I think I said that before.
12. There is so much else that is missing - the literature on mitochondria, toxic assaults including molds, and many others. I can't go into them all here - but THEY should have. If there was enough time, they should have said so and still listed the bibliography.
------------------------------------
Sadly, I don't think we can do much about this. It was suggested that we "act up" (a reference to AIDS activism). I think that suggestion was well-meaning, but again, naïve. Several specialists who treat both AIDS and CFS have said that CFS patients are, in general, as sick as AIDS patients are in the last two months of life. The people who were "acting up" were not THOSE patients - they were often the healthy friends and loved ones of dying AIDS patients.
We can't occupy the Capitol building or the Stock Exchange because we can't take the chance of going to jail. For a person with this condition, that could be a medical disaster. So even those who want us to demonstrate are ignoring the nature of this disease as a disability.
(I could also add that AIDS patients did not have to contend with the Patriot Act, or a nation hardened to demonstrations.)
Nobody wanted to pay much attention to us advocates when we wanted to dump this whole exercise - for that matter, nobody paid attention to the Congressionally mandated CFSAC or a letter signed by nearly 50 specialists. I don't think they are going to pay much attention to us now.
The US is in the process of switching over from ICD-9-CM to ICD-10-CM this fall. As a result, there is a coding freeze in place. Unless ordered from above within the government, SEID cannot get a code authorized until October 2016.
So why go through the exercise? Well, it seems to have effectively stymied CFSAC's efforts to have the government sponsor a workshop of specialists to revise the CCC and then for the government to adopt it.
We could always put together our OWN committee and have the results published in a peer-reviewed journal. Of course, the US government may ignore that - but perhaps clinicians and researchers won't. There is a precedent - the Reeves definition (2006) has been ignored by everybody except
CDC, and even CDC uses the Jason prevalence rates on its website, not Reeves'.
In fact, DePaul specialist Leonard Jason just published a new clinical definition that is (in my opinion) better than the IOM's:
http://www.tandfonline.com/doi/abs/10.1080/21642850.2015.1014489
But I think the next move will have to come from the US federal government.
If CDC revamps its website and "toolkit" and gets rid of their recommendation of CBT, GET, antidepressants and sleep aids, I will eat my words and consider the IOM report a success.
If NIH increases spending on our disease from $6 million a year (in the bottom five of all conditions funded by NIH) to something more commensurate with the severity and prevalence (one million adult Americans) of this disease - say, $100 million (still much lower than the spending for MS), I will eat my words and consider the IOM report a success.
If, as I suspect, neither agency will amend their ways with regards to this disease, then all the good intentions in the world won't help. The IOM Report, $1million and the committee's time and effort, will all have been a terrible waste.
The week before the rollout of the IOM report, a lovely young woman named Vanessa Li took her own life because she continued to suffer dramatically from the disease and she saw no hope for a change.
Karina Hansen, only 25, has spent the past two years imprisoned in a Danish psychiatric asylum for the sin of having a diagnosis of M.E. and continues to languish there, unable to see her family.
http://cfstreatment.blogspot.nl/2015/02/the-iom-report-good-bad-and-absolutely.html
The full IOM report itself is available here:
http://books.nap.edu/openbook.php?record_id=19012
(You can download and save it in PDF form for free, but that may require registering as if you were going to buy it, then downloading it for free when given that option. They are charging $50 for the report in hard copy.)
And a new physician's guideline written by the IOM is available and can be downloaded here:
http://www.iom.edu/~/media/Files/Report%20Files/2015/MECFS/MECFScliniciansguide.pdf
I think the IOM Committee meant well, but I think they failed.
The CFSAC (CFS Advisory Committee) is a Congressionally mandated committee charged with advising the Secretary of Health and Human Services (HHS) on issues related to CFS. In 2004, CFSAC asked that HHS adopt the new Canadian Consensus Criteria (2003), created by a committee of clinicians - many from the US. They were ignored. They kept asking.
A decade later, CFSAC asked HHS to sponsor an OPEN workshop of EXPERTS to UPDATE THE CCC. Instead, HHS paid the IOM $1 million to put together a committee to update the name and definition - but say nothing about treatment. The committee was about half specialist, half amateur.
Why did HHS fail to take the advice of the committee charged by Congress to give it advice - CFSAC? The first failure of the IOM committee was in its very existence. HHS should have listened to CFSAC.
The second great flaw is the failure to discuss treatments. That was mandated in the instructions to the IOM. I wonder why.
British psychiatrists have been recommending a combination of Cognitive Behavior Therapy (CBT) and Graded Exercise Therapy (GET) for two decades, and so does the US CDC. It does not really matter what you call it - if it can be cured by CBT/GET, quite obviously it's not really a physiological disorder.
If the committee's conclusions are accurate, CBT is a waste of time as a "cure." In fact, there is a short discussion of the literature on CBT at the very end of the report, in Appendix C on disability, which concludes there is no research providing evidence that CBT can get patients back to work. But that was not in the body of the report, nor the summary provided the media, nor in the physician's guide that the IOM just released.
If the committee's conclusions are accurate, Graded Exercise Therapy can be downright dangerous - especially if administered as a "cure" by those who do not understand the disease. And especially if in tandem with psychotherapy urging the patient to ignore what the body is saying and adopt a "positive attitude." Post-exertional worsening of symptoms is a hallmark of this disease - that's why they named it SEID (Systemic Exertion Intolerance Disease).
But the committee was FORBIDDEN to discuss treatments, and there is nothing to keep CDC and others from continuing to recommend it. Acquiescing to this "remit" will haunt the committee
forever, and it is the most serious problem with the report. But it will make insurance companies happy.
Now for more specific comments:
1. The name SEID (Systemic Exertion Intolerance Disease) is a train wreck. Yes, they gave us "disease" instead of "syndrome" - but I doubt it will make much difference. "Exertion intolerance" will be viewed by most people - including most in the medical profession - as a fancy way to say CFS. And if you had any doubts, in the flow chart to assist diagnosis that is in both the report and the physician's guideline, the top and defining symptom is ... "Fatigue." (P. 7 of the full IOM report)
If you had any more doubts, the report criticizes AND REJECTS numerous studies because the researchers used healthy people as controls instead of people with "other fatiguing" conditions, or diseases, or complexes, or syndromes, or ... Well, you get the idea. Last time I looked, the correct methodology is to contrast the study group with a control approximating the normal population as best as possible. Why add this new criteria - particularly when NOWHERE in this report is there a list of so-called "fatiguing conditions"?
Yes, for a first pass at a diagnosis, if your definition begins with "fatigue" you want to make sure you are distinguishing the fatigue from this disease from fatigue for other reasons. But ... I thought the new definition didn't focus on fatigue as the prime symptom. Guess I was wrong about that.
And if there are studies that have shown statistically significant differences from a sample of the normal population, a scientific report should have included them, whether or not they also used a control group of patients with "other fatiguing conditions." This is a major failing.
The definition and the summary were failures also because you have to read the full report to see that
they recommend CPET scores to measure PEM, NK cell function to measure the severity of the condition, and a tilt-table test (TTT) or an in-office substitute to test for autonomic dysfunction. Instead, there is a plethora of subjective questionnaires offered.
I do give the physician's guide credit for mentioning these, but in the end they suggest ... Subjective questionnaires for diagnosis.
It would make an enormous difference in both the perception, and the real world treatment, of patients with this disease if objective tests were emphasized. But they waffled at the end. I guess they didn't want to tangle with insurance companies.
2. The committee should have included a list of diseases that need to be ruled out because it is important for them to be treated. That includes Hep C, congestive heart failure, hypothyroidism, hypocortisolism, primary mood disorders, and numerous others. However ...
3. Once such a condition is recognized and treated, if the patient continues to meet the definition for the disease, they can still get a diagnosis. Skipping that interim step will do the patients no favors, and possibly result in numerous misdiagnoses.
4. Once treated, however, most conditions should not be exclusionary. The committee is correct in this - just as a person can have both cancer and hypothyroidism, so too can a patient have both "ME/CFS (SEID)" and hypothyroidism. This is a particularly pertinent example, because research that did not make it into the report provides evidence many patients with a diagnosis of ME or CFS have a chronic viral infection. It is known that many herpesvirus infections (EBV, CMV, HHV-6A) can cause Hashimoto's hypothyroidism. To exclude Hashimoto's (a condition where your own antibodies attack your thyroid) would lead to the exclusion of many patients with chronic viral infections.
5. Instead of offering an unbiased survey of the evidence of chronic viral infections in ME and CFS, the committee stuck to the government line that there are no chronic viral infections except in AIDS. But if you start out by excluding evidence to the contrary, you have created a tautology. Surely they could have examined that evidence, which goes beyond EBV, but added their OPINION - which is what it is - that the disease is not caused by chronic viral infections. Perhaps they should go back and read Popper again on falsifiability and the inability to use statistics to disprove a hypothesis for which it is acknowledged there is evidence, but it is insufficient evidence.
6. Some have called for NMH/POTS and Ehlers-Danlos Syndrome (a hereditary connective tissue disorder) to be exclusionary. But - as the committee correctly noted - there is significant evidence that NMH/POTS and CFS (Fukuda 1994), and NMH/POTS and CCC are correlated. Again, you can treat the NMH/POTS but the patient will still have the disease. The symptoms will be a bit better, however, and it is irresponsible not to try to do something about it. The literature in the correlation goes back to Ramsay's definition of M.E., and a 1995 article in JAMA (the Journal of the American Medical Association). Newer research shows Ehlers-Danlos correlates with NMH/POTS.
7. A patient with depression or anxiety should be treated for depression or anxiety - but if they have the disease, they will still be sick. Furthermore, the incidence of secondary depression is similar to that in MS patients. Of course these patients should be treated!
However, major mood disorders and depression/anxiety are the elephant in the room for this disease. While they are exclusionary for almost every other diagnostic criteria - they are NOT excluded for what is called the "Oxford definition," which consists of six months of debilitating fatigue not caused by a physiological disorder (and was curiously missing from the list of extant definitions.). The Oxford definition underlies a parallel universe of psychiatric papers as numerous as the research on physiological aspects of the disease. These psychiatrists generally do not mention the physiological evidence in their work, and they frequently cite each other, so a novice who is only aware of that research will only know about ... The Oxford definition and the so-called "biopsychosocial" school of British psychiatry.
These psychiatrists peddle CBT/GET as THE cure for what they call "CFS/ME." The CDC's website throws in SSRIs and sleeping pills, but basically echoes the British psychiatric version. That is not a coincidence: leading lights of the British school have all advised the CDC frequently on "CFS" (and often on GWI as well): Simon Wessely, Peter White, Michael Sharpe, Trudie Chalder.
Once again, the failure of the IOM report to directly address the parallel literature in psychiatry, and the problems with CBT and GET, can only be viewed as a great failure. It was nice for them to say "ME/CFS SEID" is not neurasthenia (a diagnosis favored by the British psychiatrists) - but it's a day late and a dollar short.
Most recently, a committee including British "CFS/ME" expert Michael Sharpe succeeded in getting a new condition called "Somatic Symptom Disorder" placed in the new DSM-5, the diagnostic manual of American psychiatry. The definition looks remarkably like a definition for CFS. It starts with complaining about fatigue. And one of the "symptoms" is complaining of four or more physical symptoms! If you weren't careful, a cancer patient could get thrown in this bin.
Therefore, had the committee not been so naïve (I do hope that is the reason), they would have made a strong statement that this disease IS NOT SOMATIC SYMPTOM DISORDER, and IS NOT A SOMATICIZING DISORDER, period. The failure to do so is enormous in the real world of misdiagnoses, mistreatments, patients thrown into mental hospitals against their will, and young people sent to foster care because their "overbearing" parents (and perhaps a "misguided specialist") diagnosed the child with ME or CFS.
8. We ALL - myself included - would prefer for the time being they name the disease after a key researcher such as Melvin Ramsay, or a patient, such as the late, brilliant young Alison Hunter. CDC insists that scientists don't do that any more. So maybe we patients should.
9. When it comes to the disease M.E., which is a distinct illness diagnosed outside the US since 1955 and recognized as neurological by WHO since 1969, the committee did not seem to know what it was. They seemed to think it was a synonym for CFS, just another choice of a name. It is not, and it is not the committee's business to dismiss it. They were charged with examining ME/CFS, but as Leonard Jason eloquently explained in his latest article, that is also a different condition with its own name. (The CCC uses ME/CFS throughout because Canada's version of ICD-10, called ICD-10-CA, placed CFS and M.E. together in the tabular version of ICD-10-CA, adopted by Canada in 2002.). At any rate, I am giving the committee the benefit of the doubt and hoping that these were just typos:
- The committee stated that M.E. and CFS are coded separately in WHO's ICD-10 (p. 27 of the full IOM report). That's not so. That is true of the US version of ICD-10, called ICD-10-CM. It is a major error - period - an error of FACT. ICD-10 codes M.E. in G93.3 in the chapter on neurological disorders (as they have since 1969). If you look at the index (unfortunately unavailable online, but I have a xerox of the appropriate page in the printed index), CFS is also coded to G93.3. Furthermore, André l'Hours of WHO frequently responded in writing to queries from British Parliament as to the proper coding of CFS, stating it belonged in G93.3. (This was during a period when the British psychiatrists were insisting "CFS" was actually neurasthenia and should be coded under psychiatry.). So the committee was FACTUALLY WRONG in stating that WHO's ICD-10 places M.E. and CFS in two different codes.
To be accurate, the US's ICD-10-CM, a clinical modification of ICD-10 due to go into effect in fall 2015, as well as ICD-9-CM, still in effect in the US, both place M.E. under neurology and CFS under "vague signs and symptoms." But that is ONLY in the U.S. It is not the world.
The rest of the world has been using ICD-10 for the past 1-2 decades while the US was still stuck on ICD-9-CM. CFS was never coded in WHO's ICD-9 because shortly after it was adopted on the US, WHO completed their conversion to ICD-10.
- The committee also stated that the Holmes (1988) article introducing CFS and its first definition acknowledged the existence of M.E. (P. 29 of the full IOM report). It did not. You will not find M.E. in the body or the footnotes of the Holmes article.
These were important because if the option of diagnosing M.E. - a separate diagnosis in the US - if the option of diagnosing M.E. had been available and known to the physicians working with cluster outbreaks, they might have chosen THAT diagnosis as more appropriate. The definition of M.E. in Melvin Ramsay's 1986 textbook can be found here (formatted as we are used to seeing definitions, but otherwise unaltered):
http://www.cfids-me.org/ramsay86.html
10. It bears repeating here that another major failing of the report was the frequent criticism of existing studies because they used healthy patients as controls. That is the usual thing to do in medicine. Isn't it? But as much as they said they wanted to downplay fatigue, they insisted that studies of the disease should have compared patients to those with "other fatiguing disorders". They said this about a dozen times, but never listed what they had in mind by "other fatiguing disorders." So once again, methinks they do protest too much.
11. In part because of (10), and in part because of a continuing prejudice in the medical profession against the possibility that a person can have a chronic viral infection (except for AIDS patients), all of the literature on pathogens (except EBV as a possible trigger) and most of the literature on immune system dysfunction was ignored. Did not appear in the report. This amounts to censorship - seriously so, because a finding that a patient has an active viral infection or a serious immune defect can lead to TREATMENT, and in the end, treatment is what these patients need most. Patients do not all test positive for the same conditions (mostly viruses), but there is a considerable body of evidence on chronic infection and this disease. After all, this disease was originally named atypical polio, and it first came to the attention of the public because of a series of cluster outbreaks around the US in the mid-1980s.
The list of pathogens is long, and, to repeat, patients do not all have the same combination: enteroviruses in general, Coxsackie in specific; Human herpesviruses (HHVs): EBV (Epstein-Barr Virus, mono, HHV-4), CMV (HHV-5), HHV-6 Variant A, HHV-7; chlamydia pneumonae; parvovirus; adenovirus; and others. The evidence is there, but because there is so little funding, they tend to be small studies. That they are small, however, cannot be taken to mean they are inaccurate (get your Popper out again, guys). It just means we need more money for research. I think I said that before.
12. There is so much else that is missing - the literature on mitochondria, toxic assaults including molds, and many others. I can't go into them all here - but THEY should have. If there was enough time, they should have said so and still listed the bibliography.
------------------------------------
Sadly, I don't think we can do much about this. It was suggested that we "act up" (a reference to AIDS activism). I think that suggestion was well-meaning, but again, naïve. Several specialists who treat both AIDS and CFS have said that CFS patients are, in general, as sick as AIDS patients are in the last two months of life. The people who were "acting up" were not THOSE patients - they were often the healthy friends and loved ones of dying AIDS patients.
We can't occupy the Capitol building or the Stock Exchange because we can't take the chance of going to jail. For a person with this condition, that could be a medical disaster. So even those who want us to demonstrate are ignoring the nature of this disease as a disability.
(I could also add that AIDS patients did not have to contend with the Patriot Act, or a nation hardened to demonstrations.)
Nobody wanted to pay much attention to us advocates when we wanted to dump this whole exercise - for that matter, nobody paid attention to the Congressionally mandated CFSAC or a letter signed by nearly 50 specialists. I don't think they are going to pay much attention to us now.
The US is in the process of switching over from ICD-9-CM to ICD-10-CM this fall. As a result, there is a coding freeze in place. Unless ordered from above within the government, SEID cannot get a code authorized until October 2016.
So why go through the exercise? Well, it seems to have effectively stymied CFSAC's efforts to have the government sponsor a workshop of specialists to revise the CCC and then for the government to adopt it.
We could always put together our OWN committee and have the results published in a peer-reviewed journal. Of course, the US government may ignore that - but perhaps clinicians and researchers won't. There is a precedent - the Reeves definition (2006) has been ignored by everybody except
CDC, and even CDC uses the Jason prevalence rates on its website, not Reeves'.
In fact, DePaul specialist Leonard Jason just published a new clinical definition that is (in my opinion) better than the IOM's:
http://www.tandfonline.com/doi/abs/10.1080/21642850.2015.1014489
But I think the next move will have to come from the US federal government.
If CDC revamps its website and "toolkit" and gets rid of their recommendation of CBT, GET, antidepressants and sleep aids, I will eat my words and consider the IOM report a success.
If NIH increases spending on our disease from $6 million a year (in the bottom five of all conditions funded by NIH) to something more commensurate with the severity and prevalence (one million adult Americans) of this disease - say, $100 million (still much lower than the spending for MS), I will eat my words and consider the IOM report a success.
If, as I suspect, neither agency will amend their ways with regards to this disease, then all the good intentions in the world won't help. The IOM Report, $1million and the committee's time and effort, will all have been a terrible waste.
The week before the rollout of the IOM report, a lovely young woman named Vanessa Li took her own life because she continued to suffer dramatically from the disease and she saw no hope for a change.
Karina Hansen, only 25, has spent the past two years imprisoned in a Danish psychiatric asylum for the sin of having a diagnosis of M.E. and continues to languish there, unable to see her family.
By the report's own admission, a quarter of a million Americans are bedridden or housebound right now as a result of this disease.
We don't need prevarication - we need URGENT ACTION.
What will it take to get that?
Mary Schweitzer, Ph.D.
Incline Village, NV
25 February 2015
Brava, Mary! Thank you for this excellent article. I will be sharing widely.
ReplyDeleteThis comment has been removed by a blog administrator.
DeleteSo some days ago I was on the internet and found a lady complaining of recurrent herpes symptoms and how this has damaged her relationships, also on the post I read about how many people say that herpes has come to stay forever and that there will never be a cure for it. The truth is I am a living proof that there are remedies to herpes, I am 42 this year and I had herpes before and it all went away in 2017 after weeks of having to use a certain herbs medication from an online store naturalherbsremedystore.square.site email ( dr.osojo@gmail.com and dr.osojoherbalcureofalldisease@gmail.com ), my doctor certified the medicine as good to digest and just not less than 3 weeks of using the herbs. I realized the recurrence symptoms were gone and medical results were carried out and confirmed that I no longer had it.
DeleteSo to many people who think this particular herbal remedy is fake or it isn't certified, that is not true, I will urge one of you to try it out and let me know the result too.
[ ] I'm here to testify about the great work Dr Osebor did for me. I have been suffering from (HERPES) disease for the past 5 years and had constant pain, especially in my knees. During the first year,I had faith in God that i would be healed someday.This disease started circulating all over my body and i have been taking treatment from my doctor, few weeks ago I came across a testimony of one lady on the internet testifying about a Man called Dr Osebor on how he cured her from HIV Virus. And she also gave the email address of this man and advise anybody to contact Dr Osebor for help for any kind of sickness that he would be of help, so I emailed him on ( oseborwinbacktemple@gmail.com ) telling him about my (HERPES Virus) he told me not to worry that i was going to be cured!! Well i never believed it,, well after all the procedures and remedy given to me by this man few weeks later i started experiencing changes all over me as Dr Osebor assured me that i will be cured,after some time i went to my doctor to confirmed if i have be finally healed behold it was TRUE, So
Delete- [ ] friends my advise is if you have such sickness or any other at all you can contact Dr Osebor via email. { oseborwinbacktemple@gmail.com }or call or what sapp him on( +2348073245515 )
- [ ] DR osebor CAN AS WELL CURE THE FOLLOWING DISEASE:-
- [ ] HIV/AIDS
- [ ] HERPES
- [ ] CANCER
- [ ] ALS
- [ ] cancer
- [ ] Diabetes
eye problem etc.
Thanks Mary where did you find the following:
ReplyDelete" If the committee's conclusions are accurate, Graded Exercise Therapy can be downright dangerous - especially if administered as a "cure" by those who do not understand the disease. And especially if in tandem with psychotherapy urging the patient to ignore what the body is saying and adopt a "positive attitude." Post-exertional worsening of symptoms is a hallmark of this disease - that's why they named it SEID (Systemic Exertion Intolerance Disease). "
That statement is NOT in the report. I wish it was. They reference the 2-day CPET results, where deconditioned normals scored the same on the second day, but the scores of patients with ME/CFS (Canadian 2003) plummeted. That's in the body of the report. One can take those results and surmise that the whole concept behind graded exercise is a bit screwy for these patients. But the committee was not supposed to discuss treatments, so they never mentioned GET.
DeleteGET/CBT was not in the scope of the IOM report. http://www.tubechop.com/watch/5205482 via @tubechop
DeleteGiven the history and politics of the disease, it was a mistake to acquiesce to that.
DeleteThanks Mary a shame it wasn't as it should have been
Deletei am amazed that CBT & GET were not included in the report. From my own experience and the knowledge of other sufferers experiences I can categorically state that CBT is NOT a treatment for ME/CFS- it is a questionnaire to test your perceptions of life. GET is probably the worst thing Patients can undergo. If someone is able to do some exercise with ME/CFS they will undoubtedly suffer repercussions from anything up to 72 hours later Post Exertional Malaise is the ONE thing that can prove someone has the disease. The cause is malfunctioning Mitochondria which fails produce energy sufficiently causing profound fatigue which will last until the Mitochondria produces sufficient energy again. What the Danish Authorities are doing to Karina Hansen [and it's happened in the UK as well] is the cruellest way anyone can treat an ME/CFS sufferer. Sophia Mirza died in 2005 because of the way she was treated in the UK- very similar to that of Karina! Under NO CIRCUMSTANCES should exercise be used as a treatment for ME/CFS
DeleteI have been suffering from (HERPES SIMPLEX VIRUS) disease for the past four years and had constant pain. During the first year, I had faith in God that i would be healed someday.This disease started circulating all over my body and i have been taking treatment from my doctor, few weeks ago i came on search on the internet if i could get any information concerning the prevention of this disease, on my search i saw a testimony of someone who has been healed from Herpes Simplex Virus by this by Dr voodoo and she also gave the email address of this man and advise anyone to contact him for any kind of problem that he would be of help, so i wrote to Dr voodoo telling him about my (Herpes Virus) he told me not to worry that i was going to be cured!! Though i never believed it,, well after all the procedures and remedy given to me by this man few weeks later i started experiencing changes all over me as the Dr voodoo assured me, after some time i went to my doctor for test and it confirmed that i have be finally healed behold it was TRUE, So friends if anyone have such problem and need help contact Dr voodoo on his email: voodoospelltemple66@gmail.com Add Dr voodoo on whatsApp +2348140120719
DeleteThank you for this blog Mary. I have shared it widely with the following comment...
ReplyDelete"Interesting roll out on the scandalous IOM report. I think Mary was being a bit diplomatic in her critique. How could two of the committee members, Bateman and Klimas, come up wirh such a foreign name and criteria to which they signed their name to just 4 years ago? The IOM report is night compared to the day light the International Clinical Consensus provided. To date, I have not seen either of them offer any acceptable evidence for such a complete change of position. For me, their professional ethic as researchers has to be questioned."
I know many patients and their friends and family are asking tge same question. I know my physcians will also have the same questions. They all have been provided copies of the ICC from me.
What a comprehensive and informative article. I love the blog name as well!
ReplyDeleteMary,
ReplyDeleteThank you for writing this blog post. You expressed so many of the questions and comments that I had rolling around in my head.
Your experience and skills as a writer, and a long time patient and advocate for this illness, is an important voice to be heard by others when weighing their own thoughts and opinions about the I.O.M. Report.
Susan Kreutzer
Wow, this is the best, most comprehensive critique of the IOM report. I live in Canada and although my ME Dx has been confirmed by specialists, 13 years after starting this illness, I diagnosed myself (I am an RN) using the CCC. Why has the IOM gotten so far away from the ICC and CCC? They may have some inaccuracies and need updating but they are far more pertinent than what the IOM has laid out. Very disappointed.
ReplyDeleteI do not know how I came upon your blog as I opened many pages at the same time. How do I sign up for your blog?
A very exciting study has just been published by the Lipkin team at Columbia in cooperation with a number of respected specialists in the disease. The study offers concrete evidence of inflammation in the first years of the disease, and suggests that in later stages this aspect of the immune system collapses.
ReplyDeleteThe full article is available here:
http://advances.sciencemag.org/content/1/1/e1400121
What is being suppressed as a possible cause of SEID is:
ReplyDelete1. Biological warfare; the disease (ME/CFS/SEID) created in laboratories e.g. in 1993 by Dr Shyh-Ching Lo, senior researcher at the Armed Forced Institute of Pathology USA who has PATENTED several virulent strains of mycoplasma. He stated that in his own patients same cause chronic fatigue syndrome. Biological warfare is part of experiments to SLOWLY debilitate the public, but not to kill quickly.
2. VACCINATION: That same is spread (or triggered) by tainted vaccines / vaccination against influenza - and strains of flu! People report getting very sick after flu shots; their immune systems begin compromised; breaking down; and they get extremely weak and start dropping, unable to function normally, like flies. Children who are subjected to the regimentation of immunization display autism. Who benefits? The pharmacol industry making huge profits - in 2002 selling 286 million doses of the vaccine from British suppliers such as Acambis.
It's actually another form of modern BIOWARFARE resulting in the slower culling (population reduction) of the human race. Same is DEBILITATING and affects every system of the human body - endocrine; brain (cognition); neurology - not enabling humans to function normally in work or in day to day activities/ limiting their ability to think (brain fog) and work. All of this is suppressed/ignored. Non-relevant patient treatments such as CBT and GET are advanced. Neither address the problem within the body's mitochondria - within the energy production cells of the human body where energy is not made/released...) and sleep does therefore not restore the body to a refreshed state as it should. GET also saps whatever energy a person has in an already critical non-energy producing state and can make the post-exertion phase - up to 72hrs later, a living hell/nightmare for the sufferer. It would appear that the human herd is about to be culled in spectacular fashion.
Thank you So Much, Mary! Your profound writing speaks for us all who live with this exhaustingly under appreciated and accepted disease. Please keep up your efforts for us...we Need you!
ReplyDeleteThis comment has been removed by a blog administrator.
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ReplyDeleteNote the number of deleted posts - I am getting spammed here by people who are confused between "herpes" (Herpes simplex 1 and 2, which create blisters) and the herpesviruses as a category, such as EBV (epstein-barr, or mono, or glandular fever) and CMV (cytomegalovirus). If anybody knows how to get them to stop spamming this blog I'd be grateful.
ReplyDeleteThis comment has been removed by the author.
ReplyDeleteJust finding now that you are posting often, which is great. I differ from you on the IOM work. They responded to a request by multiple federal agencies, and I think did a good job. Their main result is to issue a simple guidance for all those doctors who do not diagnose M.E./CFIDS, or SEID, for what whatever reason. I have left the link to that report with two doctors I saw in finding a new primary care physician. Both said they never saw a person with this disease, and clearly knew nothing about it, except to hold back their scorn of me overtly. They let it show in their absence of proper response to my need for a pcp, not for specialist. The second doctor agreed to write some prescriptions for me based only on the long line of doctors, now retired, who early on diagnosed me or saw me for a particular symptom. He never once touched me in a 45 minute session that should have been a physical. That doctor and the one I wholly rejected both need very basic information on this disease, and somehow shed their sense that acknowledging a patient with this disease will get them rejected from the doctor's gold league, or whatever it is they fear.
ReplyDeleteI now am upset that my primary care physician for 25 years retired so abruptly and without referring me to another doctor, as I learned after the fact that I needed a referral. After nearly 27 years of this illness, I feared that knowledge of and respect for the disease had fallen among doctors, but I was disappointed to be proven correct. Long away from the doctors who saw me fall into disease and disability, I am sicker yet must work harder to gain minimal respect, much less minimal treatment for non M.E./CFIDS situations.
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ReplyDelete1. HIV&AIDS
2. ASTHMA/HSV 1,2,3
3. HAND FOOT AND MOUTH DISEASE
4. ALS/LUPUS
5. SKIN EFECTION/SICKLE CELL
6. IMPOTENCE/STD
7. BARENESS/INFERTILITY
8. DIARRHEA/DIABETICS
9. PENIS ENLARGEMENT.
10. DIABETES TYPE1,TYPE2,TYPE3...etc
please i want every one with this virus to be free, that is why I will be dropping his email address,
Dr.ituafelice@gmail.com call or Whatsapp him on +2347086722395.
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ReplyDelete
ReplyDeleteI am glad with the invention of natural herbal permanent cure for herpes. Sometimes last year i was checking for permanent solution to this offensive infection i got from boy friend then i came across a testimony shared by someone who got cured already and i applied The herbal doctor called me to ask if i actually needed the cure, i ordered and he sent me the herbs which i used for two weeks then i was totally relieved of all symptoms. Now i completely test negative to HSV11. You can reach the doctor through his email: drijahosolutioncenter@gmail.com if you also want cure for your HSV 1 and 2 .the doctor says he also as cure for CANCER and DIABETES.
i was diagnosed of herpes in 2015 and I tried all possible means to get cure but all to no avail until i saw a post in a health forum about a herbal doctor from Africa who prepare herbal medicine to cure all kind of diseases including herpes virus, at first i doubted if it was real but decided to give it a try, when i contact this herbal doctor via his email i bought the herpes herbal medicine and received it through DHL within 7 days and used it as prescribed, i tested negative to herpes virus within 3 weeks of usage, Do not loose hope too soon contact him If you need his help you can Email him @drwilliamobohspellhome@gmail.com
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ReplyDeleteYou can also WhatsApp him on +2349044680467
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So some days ago I was on the internet and found a lady complaining of recurrent herpes symptoms and how this has damaged her relationships, also on the post I read about how many people say that herpes has come to stay forever and that there will never be a cure for it. The truth is I am a living proof that there are remedies to herpes, I am 42 this year and I had herpes before and it all went away in 2017 after weeks of having to use a certain herbs medication from an online store naturalherbsremedystore.square.site email ( dr.osojo@gmail.com and dr.osojoherbalcureofalldisease@gmail.com ), my doctor certified the medicine as good to digest and just not less than 3 weeks of using the herbs. I realized the recurrence symptoms were gone and medical results were carried out and confirmed that I no longer had it.
ReplyDeleteSo to many people who think this particular herbal remedy is fake or it isn't certified, that is not true, I will urge one of you to try it out and let me know the result too.
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ReplyDelete[ ] I'm here to testify about the great work Dr Osebor did for me. I have been suffering from (HERPES) disease for the past 5 years and had constant pain, especially in my knees. During the first year,I had faith in God that i would be healed someday.This disease started circulating all over my body and i have been taking treatment from my doctor, few weeks ago I came across a testimony of one lady on the internet testifying about a Man called Dr Osebor on how he cured her from HIV Virus. And she also gave the email address of this man and advise anybody to contact Dr Osebor for help for any kind of sickness that he would be of help, so I emailed him on ( oseborwinbacktemple@gmail.com ) telling him about my (HERPES Virus) he told me not to worry that i was going to be cured!! Well i never believed it,, well after all the procedures and remedy given to me by this man few weeks later i started experiencing changes all over me as Dr Osebor assured me that i will be cured,after some time i went to my doctor to confirmed if i have be finally healed behold it was TRUE, So
ReplyDelete- [ ] friends my advise is if you have such sickness or any other at all you can contact Dr Osebor via email. { oseborwinbacktemple@gmail.com }or call or what sapp him on( +2348073245515 )
- [ ] DR osebor CAN AS WELL CURE THE FOLLOWING DISEASE:-
- [ ] HIV/AIDS
- [ ] HERPES
- [ ] CANCER
- [ ] ALS
- [ ] cancer
- [ ] Diabetes
eye problem etc.
Natural herbs have cured so many illness that drugs and injection cant
ReplyDeletecure. I've seen the great importance of natural herbs and the wonderful
work they have done in people's lives. i read people's testimonies online
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