(Part 1 of 2)
For what it is worth, here is my draft submission. The Word version I'm
sending has underlining, italics, bold, different fonts, etc - if somebody
wants a copy, PM me with your E-mail address and I'll E-mail it (the Word version) as it's easier to read. Don't have time/energy to make it fancy here.
Any comments, typos, etc are welcomed - however this just fits on five pages so it's not easy for me to add more (although I could make the borders
slightly smaller and shrink the font from size 12 Times New Roman if
necessary). One person told me you can't use "sporty" like this in the US so will change that (she suggested athletic - but does that cover the fact that I wasn't just fit but actually played lots of sports?)
If anyone wants to make similar points, feel free!! (It might re-inforce the
points).
I figure loads of people will be making comments about XMRV so didn't say
anything on that (no space).
Tom Kindlon
==========================================================Don't support the Reeves/empirical definition/criteria for CFS?
Sign the petition at: http://CFSdefinitionpetition.notlong.com
==========================================================
(Draft)
Tom Kindlon's Written Testimony: CFSAC Meeting October 2009
My name is Tom Kindlon. I have CFS (or ME or ME/CFS, the terms I prefer)
for over 20 years, having previously been healthy (and very "sporty").
Unfortunately it took me over 5 years to get diagnosed. By the time I was
diagnosed I was virtually bedbound and I have only improved a small bit
since then i.e. I have been housebound with CFS for over 15 years.
I have been on the committee of the Irish ME/CFS Association (formerly the
Irish ME/CFS Support Group) since 1996 and have been Assistant Chairperson
since 1997. I have been active in the ME community internationally in
various ways.
I believe I have a lot of useful knowledge and experience in the area. In
the last twelve months, I have had letters on the subject of CFS published
in four peer-reviewed journals (British Medical Journal, Brain (a neurology
journal), Bulletin of the IACFS/ME and Pain Medicine) and have two more "in
press" (Psychological Medicine and Journal of Rehabilitation Medicine (this
one was co-written with Ellen Goudsmit PhD)).
I want to make three points:
1) I am very concerned about the "empirical" definition (Reeves, 2005) the
CDC has adopted for CFS research in recent years
I set up a petition on the issue on the 15th of April, 2009. This petition
is summarized in 10 words as,
"CDC CFS Research should not involved the empirical definition (2005)"
http://www.ipetitions.com/petition/empirical_defn_and_CFS_research/index.html
The petition
We call on the Centers for Disease Control and Prevention (CDC) to stop
using the "empirical" definition[1] (also known as the Reeves 2005
definition) to define Chronic Fatigue Syndrome (CFS) patients in CFS
research.
The CDC claim it is simply a way of operationalizing the Fukuda (1994)
definition[2]. However the prevalence rates suggest otherwise: the
"empirical" definition gives a prevalence rate of 2.54% of the adult
population[3] compared to 0.235% (95% confidence interval, 0.142%-0.327%) and 0.422% (95% confidence interval, 0.29%-0.56%) when the Fukuda definition was used in previous population studies in the US[4,5].
The definition lacks specificity. For example, one research study[6] found
that 38% of those with a diagnosis of a Major Depressive Disorder were
misclassified as having CFS using the empirical/Reeves definition.
References
[1] Reeves WC, Wagner D, Nisenbaum R, Jones JF, Gurbaxani B, Solomon L,
Papanicolaou DA, Unger ER, Vernon SD, Heim C. Chronic fatigue syndrome--a
clinically empirical approach to its definition and study. BMC Med. 2005 Dec
15;3:19. Link: http://www.biomedcentral.com/1741-7015/3/19
[2] Fukuda K, Straus SE, Hickie I, Sharpe MC, Dobbins JG, Komaroff A. The
chronic fatigue syndrome; a comprehensive approach to its definition and
study. Ann Int Med 1994, 121:953-959.
[3] Reeves WC, Jones JF, Maloney E, Heim C, Hoaglin DC, Boneva RS, Morrissey
M, Devlin R. Prevalence of chronic fatigue syndrome in metropolitan, urban,
and rural Georgia. Popul Health Metr. 2007 Jun 8;5:5.
[4] Reyes M, Nisenbaum R, Hoaglin DC, Unger ER, Emmons C, Randall B, Stewart
JA, Abbey S, Jones JF, Gantz N, Minden S, Reeves WC: Prevalence and
incidence of chronic fatigue syndrome in Wichita, Kansas. Arch Int Med 2003,
163:1530-1536.
[5] Jason LA, Richman JA, Rademaker AW, Jordan KM, Plioplys AV, Taylor RR,
McCready W, Huang CF, Plioplys S. A community-based study of chronic fatigue
syndrome. Arch Intern Med. 1999 Oct 11;159(18):2129-37.
[6] Jason, LA, Najar N, Porter N, Reh C. Evaluating the Centers for Disease
Control's empirical chronic fatigue syndrome case definition. Journal of
Disability Policy Studies 2008, doi:10.1177/1044207308325995.
Further reading: Leonard Jason, Ph.D., DePaul University. Problems with the
New CDC CFS Prevalence Estimates
tinyurl.com/2qdgu4 i.e.
http://www.iacfsme.org/IssueswithCDCEmpiricalCaseDefinitionandPrev/tabid/105
/Default.aspx
-------------------------------------------------------------------
I'm the first to admit that this isn't exactly the "catchiest" petition that
has ever been created. One might think it would be lucky to get a few dozen
responses.
However already 1633 people have signed (at the time
of writing). Many have left comments which can be read on the site:
http://www.ipetitions.com/petition/empirical_defn_and_CFS_research/index.htm
l
[Aside: other people have also left comments but for some reasons the
comments have not gone up].
I believe this shows the depth of feeling there is on this issue.
As I said in my last submission, if one looks at the CFSAC function, it is
clear that the issues relating to the definition are fairly central.
I listed numerous problems regarding the definition in my submission to the
May 2009 CFSAC meeting
(http://www.hhs.gov/advcomcfs/meetings/presentations/kindlon_0509.pdf) so
I'm not going to repeat them now.
I do not believe that Dr Bill Reeves adequately dealt with the concerns
about the Reeves 2005 criteria in the last meeting. He said that the
difference between the prevalence rates they found in Georgia (2540 per
100,000) compared to previous estimates (235 and 422 per 100,000) were down to two issues:
- the different methodology in the Georgia where they brought in people who
did not complain of fatigue on the telephone screening. He said that "20-30
percent of people who did not complain about fatigue endorsed the Fukuda
criteria." However, the paper for which he is the corresponding author
actually gives a lower figure of 11.5% ["In other words, 11.5% of subjects
with CFS would not have been detected in previous studies that queried
participants only for fatigue"]. It should also be remembered that some of
these people might not have satisfied the criteria for Fukuda as it is
normally applied - the Reeves criteria make it easier to satisfy the
criteria. So the real figure could well be less than 11.5%. But even if
one takes the figure of 11.5%, that would only bring the figures of 235 and
422 per 100,000 up to 266 and 479 per 100,000 which are still dwarfed by the
2540 per 100,000 prevalence rate from the Reeves criteria (2005).
- The other point he starts talking about in this section is criteria
regarding major depressive disorder so he may have been trying to make a
point with regard to this. Personally I agree with him and see this as an
important area also! First a quick aside: there are various forms of
depression e.g. dysthymia, atypical depression, etc. In the past, apart
from bipolar, the main one excluded was MDDm (melancholic Major Depressive
Disorder), a severe type of depression. Many people still had depression
but were included as they satisfied the criteria.
With the Reeves (2005) criteria, it says: "Following recommendations of the
International CFS Study Group, only current MDDm was considered exclusionary for CFS." However, part of the specific recommendations of the International CFS Study Group [1] that (Reeves claims his definition is based on) was that MDDm had to have been resolved for more than 5 years:
"The 1994 case definition stated that any past or current diagnosis of major
depressive disorder with psychotic or melancholic features, anorexia
nervosa, or bulimia permanently excluded a subject from the classification
of CFS ... we now recommend that if these conditions have been resolved for
more than 5 years before the onset of the current chronically fatiguing
illness, they should not be considered exclusionary."
It might not be important to point this out for definitions for some
illnesses: however if one looks at table 2 of the 2005 paper, 6 of the 16
who are said to have CFS using the "current classification" of CFS, had been
diagnosed with MDDm at a previous assessment which suggests it is important
in this context.
Also Leonard Jason published a study which found that 38% of those who have Major Depressive Disorder but not CFS would satisfy the symptom, fatigue, etc criteria in the Reeves definition.
Also the Nater et al. (2009) study found that 57% had current psychiatric
disorders and 89% had lifetime psychiatric disorders, suggesting the
definition is picking up a group with a lot of psychopathology.
[Aside: A lot of people have made suggestions to me speculating why the CDC
broadened the criteria in the way I have. I do not know the answer. The
most plausible theory to me is the following: The CDC followed patients in
the community in 1997, 1998, 1999 and 2000. Between December 2002 and July 2003, they were brought in for intensive testing. In total, 227 people were invited in, including 70 who had previously been diagnosed with CFS. These people went through very expensive testing - the whole exercise cost $2m. However, unfortunately, only 6 out of the 70 cases of CFS satisfied the
Fukuda definition when they were brought in. Also 4 more of the other
individuals also satisfied the definition. If one only excludes people who
currently have Melancholic Major Depressive Disorder (MDDm) (which was not
the recommendation of the International CFS Study group), one can get the
numbers who satisfy the Fukuda definition up to 16. The CDC admit this in
their paper (Reeves, 2005). However 10 (or 16 if one allows all the MDDm
cases) people with CFS would not be enough for the CDC to publish CFS
studies with a lot of the data they have. For some of the experiments,
people would not have been suitable for one reason or another e.g. they were
on medication. Also, often data is not complete or tests become corrupted
so a percentage is lost. For some of the experiments, gender might make a
difference and one may end up excluding the men as there might not be enough patients. So 10 or 16 CFS patients is not enough to publish CFS papers using this data. But $2m of the CFS fund had been spent on this experiment and it might look like a waste of taxpayers' money if papers were not published. The CDC had already gotten into trouble for misusing the CFS
budget in the past. So the definition of CFS was expanded so that CFS
papers could be published. So that's one plausible theory although one does
not need to accept that to believe that the empirical definition is flawed].
Even if for some reason, the CFSAC do not want to recommend against the
definition, it would be good if you pressed the CDC to make clear in each
and every paper they write that they use the empirical criteria, that they
were used. The reference for the empirical criteria is often not being put
in the list of references. I know the patients were selected using the
empirical criteria because they are part of the 2-day Wichita study cohort
or from the Georgia study but most people reading the papers will not know
this.
--------------------------
2) I think the CDC CFS program should have to cut its ties with Peter White,
according to its own rules regarding external reviewers:
At the May 2008 CFSAC meeting, the following information was given on the
CDC External Peer Review of CFS Program
http://www.hhs.gov/advcomcfs/meetings/minutes/cfsac080505min_pdf.pdf
"CDC plans to conduct an external peer-review of the CFS program in late
summer/early fall 2008. This review will be conducted by a panel composed of
national and international experts that is to include representatives from
the Coordinating Center for Infectious Diseases Board of Scientific
Counselors and CFSAC. CDC is requesting that CFSAC members recommend names of experts with no conflict of interest (direct funding from CDC)"
and
Dr. Miller:
"The panel will be external experts in the field who have no conflict of
interest-they are not receiving CDC funding and ***would not have a direct
impact on the program in its development in stages other than the
recommendations.***"
One of the external review panel (which was small - only 4 people wrote the
report), was Dr Peter White. At the May 2008 CFSAC meeting, Dr Bill Reeves
said: "We talk to Dr. White fairly regularly."
It is unclear who nominated Dr. White to the panel of external reviewers -
perhaps the CFSAC could ask this. It was not the CFSAC as the minutes show. Dr. Reeves talked as if they might have been suggested Dr. White be involved because he was an "expert on autonomic nervous system function." (which is a curious statement to make given Dr White is a psychiatrist, whose
PubMed-listed articles do not suggest he is an expert in this field).
Anyway, the external review panel made the following recommendations:
"The panelists recommend that the CDC program urgently consider intervention studies to help to elucidate the direction of causality in the several pathophysiologies identified by the CDC. This strategy was not articulated clearly. For example, since both cognitive behavior therapy and graded exercise therapies are known to address some of the abnormalities found, and since both these therapies have been shown to be efficacious for CFS, these behavioral interventions should be seriously considered. Collaborations with providers and medical schools practised in randomised controlled trials might provide the best means to achieve this."
A summary of strategic recommendations
[..]
5. Clinical guidelines on management should be developed for use in the USA,
by the CDC team in collaboration with others, and disseminated for CFS.
6. The team needs to consider studies that test the direction of causality
of pathophysiology, such as using interventions."
At the May 2009 meeting, Dr Reeves said:
""Peter White, the psychiatrist that we work with at Emory,"
"We are in the process of planning a cognitive behavioral therapy (CBT) and
graded exercise (GET) trial as part of the provider registry population in
Macon. We're going to do that in collaboration with the providers in Macon,
with Mercer Medical School, ***with the U.K. group***, and with Mayo
Clinic."
- "International Workshop - Research, Clinical, and Pediatric Definitions of
CFS - I would like to try to get together by the winter of 2009. I know the
IACFS/ME is interested in this. We want to include countries such as UK that
have CFS care completely integrated into their healthcare system."
- "Dr. Reeves: An excellent comment. Our focus is obviously on the United
States. There are three important reasons for international collaboration.
One of them I alluded to. There are countries that have put CFS evaluation,
diagnosis, and management into their national health systems. The UK is one
of those. An international meeting provides the chance to learn from another
government that has embraced this illness- perhaps not to the extent that
everybody would like-but is trying to work with it as a national health
service."
Given that the only representative from the UK that the CDC has invited to
its CFS meetings since around 2001/2002 is Peter White, it looks very likely
that they have him in mind for both of these workshops. Also it looks like
he is involved in their Emory research and may be involved in the CBT/GET.
Both for the CDC's reputation and Dr White's, it would be better if the CDC
cuts its ties with him given he took part in the external peer-review.
For what it is worth, here is my draft submission. The Word version I'm
sending has underlining, italics, bold, different fonts, etc - if somebody
wants a copy, PM me with your E-mail address and I'll E-mail it (the Word version) as it's easier to read. Don't have time/energy to make it fancy here.
Any comments, typos, etc are welcomed - however this just fits on five pages so it's not easy for me to add more (although I could make the borders
slightly smaller and shrink the font from size 12 Times New Roman if
necessary). One person told me you can't use "sporty" like this in the US so will change that (she suggested athletic - but does that cover the fact that I wasn't just fit but actually played lots of sports?)
If anyone wants to make similar points, feel free!! (It might re-inforce the
points).
I figure loads of people will be making comments about XMRV so didn't say
anything on that (no space).
Tom Kindlon
==========================================================Don't support the Reeves/empirical definition/criteria for CFS?
Sign the petition at: http://CFSdefinitionpetition.notlong.com
==========================================================
(Draft)
Tom Kindlon's Written Testimony: CFSAC Meeting October 2009
My name is Tom Kindlon. I have CFS (or ME or ME/CFS, the terms I prefer)
for over 20 years, having previously been healthy (and very "sporty").
Unfortunately it took me over 5 years to get diagnosed. By the time I was
diagnosed I was virtually bedbound and I have only improved a small bit
since then i.e. I have been housebound with CFS for over 15 years.
I have been on the committee of the Irish ME/CFS Association (formerly the
Irish ME/CFS Support Group) since 1996 and have been Assistant Chairperson
since 1997. I have been active in the ME community internationally in
various ways.
I believe I have a lot of useful knowledge and experience in the area. In
the last twelve months, I have had letters on the subject of CFS published
in four peer-reviewed journals (British Medical Journal, Brain (a neurology
journal), Bulletin of the IACFS/ME and Pain Medicine) and have two more "in
press" (Psychological Medicine and Journal of Rehabilitation Medicine (this
one was co-written with Ellen Goudsmit PhD)).
I want to make three points:
1) I am very concerned about the "empirical" definition (Reeves, 2005) the
CDC has adopted for CFS research in recent years
I set up a petition on the issue on the 15th of April, 2009. This petition
is summarized in 10 words as,
"CDC CFS Research should not involved the empirical definition (2005)"
http://www.ipetitions.com/petition/empirical_defn_and_CFS_research/index.html
The petition
We call on the Centers for Disease Control and Prevention (CDC) to stop
using the "empirical" definition[1] (also known as the Reeves 2005
definition) to define Chronic Fatigue Syndrome (CFS) patients in CFS
research.
The CDC claim it is simply a way of operationalizing the Fukuda (1994)
definition[2]. However the prevalence rates suggest otherwise: the
"empirical" definition gives a prevalence rate of 2.54% of the adult
population[3] compared to 0.235% (95% confidence interval, 0.142%-0.327%) and 0.422% (95% confidence interval, 0.29%-0.56%) when the Fukuda definition was used in previous population studies in the US[4,5].
The definition lacks specificity. For example, one research study[6] found
that 38% of those with a diagnosis of a Major Depressive Disorder were
misclassified as having CFS using the empirical/Reeves definition.
References
[1] Reeves WC, Wagner D, Nisenbaum R, Jones JF, Gurbaxani B, Solomon L,
Papanicolaou DA, Unger ER, Vernon SD, Heim C. Chronic fatigue syndrome--a
clinically empirical approach to its definition and study. BMC Med. 2005 Dec
15;3:19. Link: http://www.biomedcentral.com/1741-7015/3/19
[2] Fukuda K, Straus SE, Hickie I, Sharpe MC, Dobbins JG, Komaroff A. The
chronic fatigue syndrome; a comprehensive approach to its definition and
study. Ann Int Med 1994, 121:953-959.
[3] Reeves WC, Jones JF, Maloney E, Heim C, Hoaglin DC, Boneva RS, Morrissey
M, Devlin R. Prevalence of chronic fatigue syndrome in metropolitan, urban,
and rural Georgia. Popul Health Metr. 2007 Jun 8;5:5.
[4] Reyes M, Nisenbaum R, Hoaglin DC, Unger ER, Emmons C, Randall B, Stewart
JA, Abbey S, Jones JF, Gantz N, Minden S, Reeves WC: Prevalence and
incidence of chronic fatigue syndrome in Wichita, Kansas. Arch Int Med 2003,
163:1530-1536.
[5] Jason LA, Richman JA, Rademaker AW, Jordan KM, Plioplys AV, Taylor RR,
McCready W, Huang CF, Plioplys S. A community-based study of chronic fatigue
syndrome. Arch Intern Med. 1999 Oct 11;159(18):2129-37.
[6] Jason, LA, Najar N, Porter N, Reh C. Evaluating the Centers for Disease
Control's empirical chronic fatigue syndrome case definition. Journal of
Disability Policy Studies 2008, doi:10.1177/1044207308325995.
Further reading: Leonard Jason, Ph.D., DePaul University. Problems with the
New CDC CFS Prevalence Estimates
tinyurl.com/2qdgu4 i.e.
http://www.iacfsme.org/IssueswithCDCEmpiricalCaseDefinitionandPrev/tabid/105
/Default.aspx
-------------------------------------------------------------------
I'm the first to admit that this isn't exactly the "catchiest" petition that
has ever been created. One might think it would be lucky to get a few dozen
responses.
However already 1633 people have signed (at the time
of writing). Many have left comments which can be read on the site:
http://www.ipetitions.com/petition/empirical_defn_and_CFS_research/index.htm
l
[Aside: other people have also left comments but for some reasons the
comments have not gone up].
I believe this shows the depth of feeling there is on this issue.
As I said in my last submission, if one looks at the CFSAC function, it is
clear that the issues relating to the definition are fairly central.
I listed numerous problems regarding the definition in my submission to the
May 2009 CFSAC meeting
(http://www.hhs.gov/advcomcfs/meetings/presentations/kindlon_0509.pdf) so
I'm not going to repeat them now.
I do not believe that Dr Bill Reeves adequately dealt with the concerns
about the Reeves 2005 criteria in the last meeting. He said that the
difference between the prevalence rates they found in Georgia (2540 per
100,000) compared to previous estimates (235 and 422 per 100,000) were down to two issues:
- the different methodology in the Georgia where they brought in people who
did not complain of fatigue on the telephone screening. He said that "20-30
percent of people who did not complain about fatigue endorsed the Fukuda
criteria." However, the paper for which he is the corresponding author
actually gives a lower figure of 11.5% ["In other words, 11.5% of subjects
with CFS would not have been detected in previous studies that queried
participants only for fatigue"]. It should also be remembered that some of
these people might not have satisfied the criteria for Fukuda as it is
normally applied - the Reeves criteria make it easier to satisfy the
criteria. So the real figure could well be less than 11.5%. But even if
one takes the figure of 11.5%, that would only bring the figures of 235 and
422 per 100,000 up to 266 and 479 per 100,000 which are still dwarfed by the
2540 per 100,000 prevalence rate from the Reeves criteria (2005).
- The other point he starts talking about in this section is criteria
regarding major depressive disorder so he may have been trying to make a
point with regard to this. Personally I agree with him and see this as an
important area also! First a quick aside: there are various forms of
depression e.g. dysthymia, atypical depression, etc. In the past, apart
from bipolar, the main one excluded was MDDm (melancholic Major Depressive
Disorder), a severe type of depression. Many people still had depression
but were included as they satisfied the criteria.
With the Reeves (2005) criteria, it says: "Following recommendations of the
International CFS Study Group, only current MDDm was considered exclusionary for CFS." However, part of the specific recommendations of the International CFS Study Group [1] that (Reeves claims his definition is based on) was that MDDm had to have been resolved for more than 5 years:
"The 1994 case definition stated that any past or current diagnosis of major
depressive disorder with psychotic or melancholic features, anorexia
nervosa, or bulimia permanently excluded a subject from the classification
of CFS ... we now recommend that if these conditions have been resolved for
more than 5 years before the onset of the current chronically fatiguing
illness, they should not be considered exclusionary."
It might not be important to point this out for definitions for some
illnesses: however if one looks at table 2 of the 2005 paper, 6 of the 16
who are said to have CFS using the "current classification" of CFS, had been
diagnosed with MDDm at a previous assessment which suggests it is important
in this context.
Also Leonard Jason published a study which found that 38% of those who have Major Depressive Disorder but not CFS would satisfy the symptom, fatigue, etc criteria in the Reeves definition.
Also the Nater et al. (2009) study found that 57% had current psychiatric
disorders and 89% had lifetime psychiatric disorders, suggesting the
definition is picking up a group with a lot of psychopathology.
[Aside: A lot of people have made suggestions to me speculating why the CDC
broadened the criteria in the way I have. I do not know the answer. The
most plausible theory to me is the following: The CDC followed patients in
the community in 1997, 1998, 1999 and 2000. Between December 2002 and July 2003, they were brought in for intensive testing. In total, 227 people were invited in, including 70 who had previously been diagnosed with CFS. These people went through very expensive testing - the whole exercise cost $2m. However, unfortunately, only 6 out of the 70 cases of CFS satisfied the
Fukuda definition when they were brought in. Also 4 more of the other
individuals also satisfied the definition. If one only excludes people who
currently have Melancholic Major Depressive Disorder (MDDm) (which was not
the recommendation of the International CFS Study group), one can get the
numbers who satisfy the Fukuda definition up to 16. The CDC admit this in
their paper (Reeves, 2005). However 10 (or 16 if one allows all the MDDm
cases) people with CFS would not be enough for the CDC to publish CFS
studies with a lot of the data they have. For some of the experiments,
people would not have been suitable for one reason or another e.g. they were
on medication. Also, often data is not complete or tests become corrupted
so a percentage is lost. For some of the experiments, gender might make a
difference and one may end up excluding the men as there might not be enough patients. So 10 or 16 CFS patients is not enough to publish CFS papers using this data. But $2m of the CFS fund had been spent on this experiment and it might look like a waste of taxpayers' money if papers were not published. The CDC had already gotten into trouble for misusing the CFS
budget in the past. So the definition of CFS was expanded so that CFS
papers could be published. So that's one plausible theory although one does
not need to accept that to believe that the empirical definition is flawed].
Even if for some reason, the CFSAC do not want to recommend against the
definition, it would be good if you pressed the CDC to make clear in each
and every paper they write that they use the empirical criteria, that they
were used. The reference for the empirical criteria is often not being put
in the list of references. I know the patients were selected using the
empirical criteria because they are part of the 2-day Wichita study cohort
or from the Georgia study but most people reading the papers will not know
this.
--------------------------
2) I think the CDC CFS program should have to cut its ties with Peter White,
according to its own rules regarding external reviewers:
At the May 2008 CFSAC meeting, the following information was given on the
CDC External Peer Review of CFS Program
http://www.hhs.gov/advcomcfs/meetings/minutes/cfsac080505min_pdf.pdf
"CDC plans to conduct an external peer-review of the CFS program in late
summer/early fall 2008. This review will be conducted by a panel composed of
national and international experts that is to include representatives from
the Coordinating Center for Infectious Diseases Board of Scientific
Counselors and CFSAC. CDC is requesting that CFSAC members recommend names of experts with no conflict of interest (direct funding from CDC)"
and
Dr. Miller:
"The panel will be external experts in the field who have no conflict of
interest-they are not receiving CDC funding and ***would not have a direct
impact on the program in its development in stages other than the
recommendations.***"
One of the external review panel (which was small - only 4 people wrote the
report), was Dr Peter White. At the May 2008 CFSAC meeting, Dr Bill Reeves
said: "We talk to Dr. White fairly regularly."
It is unclear who nominated Dr. White to the panel of external reviewers -
perhaps the CFSAC could ask this. It was not the CFSAC as the minutes show. Dr. Reeves talked as if they might have been suggested Dr. White be involved because he was an "expert on autonomic nervous system function." (which is a curious statement to make given Dr White is a psychiatrist, whose
PubMed-listed articles do not suggest he is an expert in this field).
Anyway, the external review panel made the following recommendations:
"The panelists recommend that the CDC program urgently consider intervention studies to help to elucidate the direction of causality in the several pathophysiologies identified by the CDC. This strategy was not articulated clearly. For example, since both cognitive behavior therapy and graded exercise therapies are known to address some of the abnormalities found, and since both these therapies have been shown to be efficacious for CFS, these behavioral interventions should be seriously considered. Collaborations with providers and medical schools practised in randomised controlled trials might provide the best means to achieve this."
A summary of strategic recommendations
[..]
5. Clinical guidelines on management should be developed for use in the USA,
by the CDC team in collaboration with others, and disseminated for CFS.
6. The team needs to consider studies that test the direction of causality
of pathophysiology, such as using interventions."
At the May 2009 meeting, Dr Reeves said:
""Peter White, the psychiatrist that we work with at Emory,"
"We are in the process of planning a cognitive behavioral therapy (CBT) and
graded exercise (GET) trial as part of the provider registry population in
Macon. We're going to do that in collaboration with the providers in Macon,
with Mercer Medical School, ***with the U.K. group***, and with Mayo
Clinic."
- "International Workshop - Research, Clinical, and Pediatric Definitions of
CFS - I would like to try to get together by the winter of 2009. I know the
IACFS/ME is interested in this. We want to include countries such as UK that
have CFS care completely integrated into their healthcare system."
- "Dr. Reeves: An excellent comment. Our focus is obviously on the United
States. There are three important reasons for international collaboration.
One of them I alluded to. There are countries that have put CFS evaluation,
diagnosis, and management into their national health systems. The UK is one
of those. An international meeting provides the chance to learn from another
government that has embraced this illness- perhaps not to the extent that
everybody would like-but is trying to work with it as a national health
service."
Given that the only representative from the UK that the CDC has invited to
its CFS meetings since around 2001/2002 is Peter White, it looks very likely
that they have him in mind for both of these workshops. Also it looks like
he is involved in their Emory research and may be involved in the CBT/GET.
Both for the CDC's reputation and Dr White's, it would be better if the CDC
cuts its ties with him given he took part in the external peer-review.