Andrew
Senior Member
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IOM treatment recommendations for CFS
In 2013 the IOM published Gulf War and Health: Treatment for Chronic Multisymptom
Illness (ISBN 978-0-309-27802-7). You can either read it for free online, or you can download a free PDF. Go to this page: http://www.nap.edu/catalog.php?record_id=18253
In this treatment guide is a section about the treatment of chronic fatigue syndrome, presumably because a percentage of GWS patients also suffer from CFS. I previously commented on part of this treatment section. Now I will comment on more, by looking at their references one by one.
1, CDC (Centers for Disease Control and Prevention). 1994. Chronic Fatigue Syndrome: The 1994 Case Definition. http://www.cdc.gov/cfs/case-definition/1994.html (accessed November
13, 2012).
Many of you know this as the 1994 Criteria. In the IOM treatment guide they cite this to support IOM statements that GET and CBT are recommended treatments, and that there is no proof that pacing works. The 1994 criteria (and the page it is found on) says nothing about CBT, GET, or pacing, one way or the other.
2, CDC. Undated. Chronic Fatigue Syndrome: A Tool Kit for Providers. http://www.cdc.gov/cfs/
pdf/cfs-toolkit.pdf (accessed November 13, 2012).
This Tool Kit for Providers offers no citations or evidence to back up its claims.
It is also the same Tool Kit that the CFSAC recommended be completely removed from the CDC website (see the recommendation here: http://www.hhs.gov/advcomcfs/recommendations/06132012.html).
3. Cleare, A. J. 2003. The neuroendocrinology of chronic fatigue syndrome. Endocrine Reviews
24(2):236-252.
The IOM states this study shows improvement in CFS symptoms from exercise. It shows no such thing. The paper is an overview of research that covers the hypothalamic-pituitary-adrenal (HPA) axis in CFS patients. It also reviews other endocrine responses. Most of the studies summarized in this paper never mention exercise. The one study that does, draws no conclusion that CFS symptoms are improved.
4. Harber, V. J., and J. R. Sutton. 1984. Endorphins and exercise. Sports Medicine 1(2):154-171.
http://www.ncbi.nlm.nih.gov/pubmed/6091217 (accessed November 11, 2012).
The IOM uses this study to back up its claims that exercise helps symptoms in CFS patient. The study never mentions CFS patients.
5. Mayo Clinic Staff. 2011. Chronic Fatigue Syndrome: Treatments and Drugs. http://www.mayoclinic.
com/health/chronic-fatigue-syndrome/ds00395/dsection=treatments-and-drugs
(accessed November 11, 2012).
This page offers no citations or evidence to back up its claims.
6. Moldofsky, H. 1993. Fibromyalgia, sleep disorder and chronic fatigue syndrome. Ciba Foundation Symposia 173:262-279.
This document covers what its title says, and it includes many citations. To verify that this is evidence-based, I would have to download and read every study it cites that seems to cover the IOM claim. That is too much for me to take on right now. The IOM uses this study to support its statement that disturbance of restorative or deep sleep might play a part in triggering symptoms of CFS. At this time, I do not dispute or confirm that this is evidence-based.
7. National Collaborating Centre for Primary Care. 2007. Chronic Fatigue Syndrome/Myalgic
Encephalomyelitis (or Encephalopathy): Diagnosis and Management of CFS/ME in
Adults and Children. London: National Institute for Health and Clinical Excellence.
http://www.nice.org.uk/nicemedia/live/11824/36193/36193.pdf (accessed November 11,
2012).
This resource offers no citations or evidence to back up its claims.
8. In addition to the above resources, the IOM includes information that has no bibliographic references. I recognize much of this as statements made on the CDC website. It should be noted that the CDC website has been discredited (see page 16 of the PDF here: http://www.hhs.gov/advcomcfs/meetings/minutes/cfsac_min-11092011.pdf).
One of the reasons for hiring an independent research group is to circumvent entrenched institutional bias. Instead of circumventing it, the IOM rubber-stamped it by uncritically accepting statements on institutional web pages that offered no evidence. The IOM also referenced journal articles with evidence other than what the IOM claims. There is only one sentence in the entire CFS treatment section that possibly points to relevant evidence.
All of the problems mentioned above happened despite the IOM using a hand-selected panel whose work was reviewed by a separate review board, checked by review monitors, and approved by the IOM. In addition to evidence, the review panel is supposed determine if information is within the scope of the project. So if this section is seen something other than part of the evidence-based process, it should have been eliminated..
I testified at the CFSAC meeting about some of the above problems. Nancy Lee, MD, who is the designated federal officer assigned to this meeting, heard my testimony. In other words, the government has been informed. So any failure to pull out of this contract is done with knowledge that IOM has a history of grossly misrepresenting the state of the evidence with regard to CFS research.
In 2013 the IOM published Gulf War and Health: Treatment for Chronic Multisymptom
Illness (ISBN 978-0-309-27802-7). You can either read it for free online, or you can download a free PDF. Go to this page: http://www.nap.edu/catalog.php?record_id=18253
In this treatment guide is a section about the treatment of chronic fatigue syndrome, presumably because a percentage of GWS patients also suffer from CFS. I previously commented on part of this treatment section. Now I will comment on more, by looking at their references one by one.
1, CDC (Centers for Disease Control and Prevention). 1994. Chronic Fatigue Syndrome: The 1994 Case Definition. http://www.cdc.gov/cfs/case-definition/1994.html (accessed November
13, 2012).
Many of you know this as the 1994 Criteria. In the IOM treatment guide they cite this to support IOM statements that GET and CBT are recommended treatments, and that there is no proof that pacing works. The 1994 criteria (and the page it is found on) says nothing about CBT, GET, or pacing, one way or the other.
2, CDC. Undated. Chronic Fatigue Syndrome: A Tool Kit for Providers. http://www.cdc.gov/cfs/
pdf/cfs-toolkit.pdf (accessed November 13, 2012).
This Tool Kit for Providers offers no citations or evidence to back up its claims.
It is also the same Tool Kit that the CFSAC recommended be completely removed from the CDC website (see the recommendation here: http://www.hhs.gov/advcomcfs/recommendations/06132012.html).
3. Cleare, A. J. 2003. The neuroendocrinology of chronic fatigue syndrome. Endocrine Reviews
24(2):236-252.
The IOM states this study shows improvement in CFS symptoms from exercise. It shows no such thing. The paper is an overview of research that covers the hypothalamic-pituitary-adrenal (HPA) axis in CFS patients. It also reviews other endocrine responses. Most of the studies summarized in this paper never mention exercise. The one study that does, draws no conclusion that CFS symptoms are improved.
4. Harber, V. J., and J. R. Sutton. 1984. Endorphins and exercise. Sports Medicine 1(2):154-171.
http://www.ncbi.nlm.nih.gov/pubmed/6091217 (accessed November 11, 2012).
The IOM uses this study to back up its claims that exercise helps symptoms in CFS patient. The study never mentions CFS patients.
5. Mayo Clinic Staff. 2011. Chronic Fatigue Syndrome: Treatments and Drugs. http://www.mayoclinic.
com/health/chronic-fatigue-syndrome/ds00395/dsection=treatments-and-drugs
(accessed November 11, 2012).
This page offers no citations or evidence to back up its claims.
6. Moldofsky, H. 1993. Fibromyalgia, sleep disorder and chronic fatigue syndrome. Ciba Foundation Symposia 173:262-279.
This document covers what its title says, and it includes many citations. To verify that this is evidence-based, I would have to download and read every study it cites that seems to cover the IOM claim. That is too much for me to take on right now. The IOM uses this study to support its statement that disturbance of restorative or deep sleep might play a part in triggering symptoms of CFS. At this time, I do not dispute or confirm that this is evidence-based.
7. National Collaborating Centre for Primary Care. 2007. Chronic Fatigue Syndrome/Myalgic
Encephalomyelitis (or Encephalopathy): Diagnosis and Management of CFS/ME in
Adults and Children. London: National Institute for Health and Clinical Excellence.
http://www.nice.org.uk/nicemedia/live/11824/36193/36193.pdf (accessed November 11,
2012).
This resource offers no citations or evidence to back up its claims.
8. In addition to the above resources, the IOM includes information that has no bibliographic references. I recognize much of this as statements made on the CDC website. It should be noted that the CDC website has been discredited (see page 16 of the PDF here: http://www.hhs.gov/advcomcfs/meetings/minutes/cfsac_min-11092011.pdf).
One of the reasons for hiring an independent research group is to circumvent entrenched institutional bias. Instead of circumventing it, the IOM rubber-stamped it by uncritically accepting statements on institutional web pages that offered no evidence. The IOM also referenced journal articles with evidence other than what the IOM claims. There is only one sentence in the entire CFS treatment section that possibly points to relevant evidence.
All of the problems mentioned above happened despite the IOM using a hand-selected panel whose work was reviewed by a separate review board, checked by review monitors, and approved by the IOM. In addition to evidence, the review panel is supposed determine if information is within the scope of the project. So if this section is seen something other than part of the evidence-based process, it should have been eliminated..
I testified at the CFSAC meeting about some of the above problems. Nancy Lee, MD, who is the designated federal officer assigned to this meeting, heard my testimony. In other words, the government has been informed. So any failure to pull out of this contract is done with knowledge that IOM has a history of grossly misrepresenting the state of the evidence with regard to CFS research.
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