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Wasn't sure where to post the following, but since IOM currently has a (secret) contract with VA to define chronic multisymptom illness (1) and since VA already describes "CFS" as a CMI (2), I thought I'd list the following here, in the ME/CFS IOM forum.
Lyme (neuroborreliosis) came up in another thread today, and this reminded me of a recent Swedish State healthcare document which "updated" (i.e. maintained) Sweden's controversial Lyme (neuroborreliosis) diagnostic-and-treatment policies (3).
In this document, State researchers state that symptoms which remain after two-weeks antibiotic treatment (PLDS - post Lyme disease syndrome) may be related to psychiatric problems; Of course, the ME/CFS community is familiar with such claims.
The 2009 study cited to support this view is "Psychiatric comorbidity and other psychological factors in patients with 'chronic Lyme disease'" (4). I don't have access to this document, but the abstract includes the following, (emphasis added):
"There is no evidence of current or previous Borrelia burgdorferi infection in most patients evaluated at university-based Lyme disease referral centers. Instead, psychological factors likely exacerbate the persistent diffuse symptoms or "Chronic Multisymptom Illness" (CMI) incorrectly ascribed to an ongoing chronic infection with B. burgdorferi. The objective of this study was to assess the medical and psychiatric status of such patients and compare these findings to those from patients without CMI... CMI patients had higher negative affect, lower positive affect, and a greater tendency to catastrophize pain (P <.001) than did the comparison group."
Perhaps others have already seen Lyme / chronic Lyme described (in writing) as a CMI?
Also of cause for concern is a statement from Columbia University's Lyme and Tick-Born Disease Research Center which advises graded-exercise therapy as treatment (5). Since Lyme (neuroborreliosis) -once treated - is a post-infection state (ME = PVFS = PIFS), it concerns me that PENE isn't named as a possible concern for some patients.
Re "treatment" for damage/ongoing symptoms and from Columbia (5):
"Ongoing attention to the problem of "deconditioning" needs to be addressed. Because patients with chronic Lyme Disease often experience dramatic fatigue (much akin to patients with Chronic Fatigue Syndrome), they spend much time in bed and so their muscles lose tone over time. This can lead to an ever worsening syndrome in which patients get tired after exercise and so avoid it. Further deconditioning results such that even less exercise the next time leads to considerable post-exertional fatigue. To counter this cycle, a very gradual but progressive exercise regimen needs to become a daily part of the patient's routine for a maximal return to health." (Emphasis added.)
On this page - (6) - however, there is brief mention of "exercise intolerance" in the work of Dr Satish Raj (Vaderbilt U), as mentioned in a 2010 conference.
(1) http://www8.nationalacademies.org/cp/projectview.aspx?key=49546
(2) http://www.publichealth.va.gov/exposures/gulfwar/medically-unexplained-illness.asp
(3) http://www.folkhalsomyndigheten.se/...agnostik-av-borreliainfektion-2013-101-28.pdf
(4) http://www.ncbi.nlm.nih.gov/pubmed/19699380
(5) http://www.columbia-lyme.org/patients/ld_treatment.html
(6) http://www.columbia-lyme.org/research/scientific.html
Lyme (neuroborreliosis) came up in another thread today, and this reminded me of a recent Swedish State healthcare document which "updated" (i.e. maintained) Sweden's controversial Lyme (neuroborreliosis) diagnostic-and-treatment policies (3).
In this document, State researchers state that symptoms which remain after two-weeks antibiotic treatment (PLDS - post Lyme disease syndrome) may be related to psychiatric problems; Of course, the ME/CFS community is familiar with such claims.
The 2009 study cited to support this view is "Psychiatric comorbidity and other psychological factors in patients with 'chronic Lyme disease'" (4). I don't have access to this document, but the abstract includes the following, (emphasis added):
"There is no evidence of current or previous Borrelia burgdorferi infection in most patients evaluated at university-based Lyme disease referral centers. Instead, psychological factors likely exacerbate the persistent diffuse symptoms or "Chronic Multisymptom Illness" (CMI) incorrectly ascribed to an ongoing chronic infection with B. burgdorferi. The objective of this study was to assess the medical and psychiatric status of such patients and compare these findings to those from patients without CMI... CMI patients had higher negative affect, lower positive affect, and a greater tendency to catastrophize pain (P <.001) than did the comparison group."
Perhaps others have already seen Lyme / chronic Lyme described (in writing) as a CMI?
Also of cause for concern is a statement from Columbia University's Lyme and Tick-Born Disease Research Center which advises graded-exercise therapy as treatment (5). Since Lyme (neuroborreliosis) -once treated - is a post-infection state (ME = PVFS = PIFS), it concerns me that PENE isn't named as a possible concern for some patients.
Re "treatment" for damage/ongoing symptoms and from Columbia (5):
"Ongoing attention to the problem of "deconditioning" needs to be addressed. Because patients with chronic Lyme Disease often experience dramatic fatigue (much akin to patients with Chronic Fatigue Syndrome), they spend much time in bed and so their muscles lose tone over time. This can lead to an ever worsening syndrome in which patients get tired after exercise and so avoid it. Further deconditioning results such that even less exercise the next time leads to considerable post-exertional fatigue. To counter this cycle, a very gradual but progressive exercise regimen needs to become a daily part of the patient's routine for a maximal return to health." (Emphasis added.)
On this page - (6) - however, there is brief mention of "exercise intolerance" in the work of Dr Satish Raj (Vaderbilt U), as mentioned in a 2010 conference.
(1) http://www8.nationalacademies.org/cp/projectview.aspx?key=49546
(2) http://www.publichealth.va.gov/exposures/gulfwar/medically-unexplained-illness.asp
(3) http://www.folkhalsomyndigheten.se/...agnostik-av-borreliainfektion-2013-101-28.pdf
(4) http://www.ncbi.nlm.nih.gov/pubmed/19699380
(5) http://www.columbia-lyme.org/patients/ld_treatment.html
(6) http://www.columbia-lyme.org/research/scientific.html
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