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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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actions on CDC empirical definition

Discussion in 'Action Alerts and Advocacy' started by Finch, Sep 29, 2009.

  1. The Phantom

    The Phantom Member

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    Please sign the petition against the Reeves definition

    I'm starting this thread, because there may be some people who haven't heard of Tom Kindlon's online petition against the Reeves (2005) empiric definition. There are about 1750 signatures on the petition, and it would be great if there were 2000+ by Thursday, the first day of the CFSAC meeting. If you haven't signed, please do. (Link to the petition is at the end of this post.)

    My fear is that Reeves is going to do XMRV testing on the patients he's been studying in Georgia using his definition. Because around 75% of those patients don't have ME/CFS, he will find a much lower percentage of people with XMRV than was found by the group at the Whittemore-Peterson Institute. Although I think WPI will ultimately prove Reeves wrong, it could cost precious time and energy and delay finding the answers about transmission and treatment that we all want and need. So I think it's very important that the CFSAC makes a strong statement against the Reeves definition--something they didn't do at their last meeting. We need to push them!

    In order to get more signatures, I've been emailing old friends, relatives, colleagues, anybody I can think of who might sign. It's actually been a good excuse to get in touch with people. This is what I've sent out, after saying hi & what's up:


    By the way, I'm emailing everyone I can think of to see if anyone is willing to sign a petition about the definition of Chronic Fatigue Syndrome (which I, along with many other people, call Myalgic Encephalomyelitis or ME/CFS). It's a pretty esoteric thing to have to have a petition about, but, unfortunately, it's important. Basically, since there's now a lot of data about infectious and other possible causes for CFS, in 2005 Dr. Reeves of the CDC decided to redefine it (CFS) so it would better fit his theory of a psychological cause. Dastardly! Anyway, there's an online petition against the definition. It's a bit of a slog to get through: there's the petition, then there are references, then there's an explanation, then there are a bunch of additional notices, then there's the place where you "sign". They do want your email address, but you can check a box saying you don't want to be notified about any additional related petitions, and I've never been spammed by them to my knowledge. You can also check a box if you don't want your name showing up on the internet. It only takes a couple of minutes.

    You may have heard about the new data that suggests that ME/CFS may be caused by a retrovirus called XMRV. Given that a retrovirus was suggested as the cause in the early 90's but rejected by the CDC, a lot of people think this is a good time to discuss why the science has been so bad. Hence, the petition. If you want more information before considering whether or not to sign, call, email or shout loudly and I'll be happy to explain further. If you know anyone else who might be willing to sign it'd be great to pass it along.

    Here's the link: http://bit.ly/nYHy5



    If you've seen this post before, I apologize. I've been putting it on threads that seem appropriate. Anyway, if you have the energy to send this to friends, I think it's worth the time.

    Also, please feel free to copy & paste and post this anywhere (Facebook, MySpace, Twitter, other forums, any other places you can think of), and to alter it in any way that works for you. If you hate ME/CFS use another name. My goal is to get as many signatures on that petition as possible.

    By the way, I think Tom Kindlon has forgiven me for describing the petition as "a bit of a slog". It's a great petition. I just want people not to give up reading before they sign. Some people have short attention spans. I know I do at times. If you want to experience a real slog, try reading the original paper on the Reeves definition. Now that's a slog. :eek:

    Here's the link again: http://bit.ly/nYHy5
     
  2. The Phantom

    The Phantom Member

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    I forgot to add: You don't have to be from the U.S. to sign. Tom posted the petition from Ireland. This affects all of us.

    Thanks to Cort for providing this forum and to everyone who contributes. I learn so much here.
     
  3. kamina

    kamina Retired account

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    My faith in online petitions actually achieving anything even marginally significant is nill but I signed it none the less. It can't hurt, anyway.
     
  4. kolowesi

    kolowesi Senior Member

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    I sent it to friends and family

    Maybe some of them will sign. Thanks to all the advocates!

    Kelly
     
  5. Wayne

    Wayne Senior Member

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    Signing Petitions

    Well, I've been putting off signing this because I've never signed an online petition before and didn't know how difficult it would be to figure out. I finally checked it out, and noticed that all you have to do is type in your name and e-mail address at the bottom. Really quite easy.

    Anyway, I just wanted to mention this in case others are a bit apprehensive about how difficult it might be to figure out how to do it. If I can do it on a day like today, I would think just about could.

    Regards, Wayne
     
  6. IntuneJune

    IntuneJune Senior Member

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    Petition signing

    Done.

    June
     
  7. Dolphin

    Dolphin Senior Member

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    It's up to 1850 now.

    Well done to The Phantom and everyone else doing their bit.

    If people keep signing and some more people write to a few contacts, there's a good chance we'll make 2000 by Thursday (when the meeting starts) or Friday (CFSAC recommendations aren't decided on until Friday afternoon).

    Of course, signatures any time would be good. But at the last CFSAC meeting there was a reference to over 1000 signatures, would be good to be over 2000 this time. I don't make any promises I'll be able to keep pushing the issue for CFSAC meetings after this.
     
  8. Dolphin

    Dolphin Senior Member

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    What % of those with Empiric criteria (Reeves 2005) CFS satisfy the Fukuda definition

    [This is a bit long but the main point is at the top. I also give
    information on the Wichita 2-day cohort (which will also be used to test for
    XMRV, near the end). It isn't the most exciting thing ever but should be
    fairly easy to read if anybody decides to read it i.e. doesn't involve complicated maths or science.]


    Subject: Empiric criteria (Reeves, 2005) and CFS: what do we
    know about the percentage of CFS (empirc) patients who would satisfy the
    Fukuda definition from random number population studies in the US


    [Main point - extract: "Assuming the population is similar one could say that the
    prevalence rate for the Empiric criteria (Reeves, 2005) is 9.69 times the
    Fukuda rate. Put another way, only 10.31% of those who satisfy the
    empiric definition would satisfy the Fukuda definition.
    This is relevant
    for the XMRV testing of the CDC cohort, for example]


    I am often hearing it said that the prevalence of

    - CFS (Fukuda definition) is 1 million adults in the US

    and for

    - the Empiric criteria (Reeves, 2005) (which Reeves says is a version of the
    Fukuda definition so the language is confusing) the prevalence is 4 million,
    or 4 times the rate

    i.e. 1 of 4 of those with the empiric definition would satisfy the normal
    Fukuda definition.


    However, I don't believe that is really correct - I think there is probably
    a much bigger disparity in a random population cohort like the Georgia
    cohort.


    I thought people might be particularly interested in this now, given the
    XMRV testing of the CDC samples.


    Of course, I think it is also relevant for dozens of studies that have been
    published on the Wichita 2-day study and Georgia study since the end of
    2005.


    The prevalence rates found in the three random-number population studies
    were:

    - 235 per 100,000 (Fukuda definition) (95% confidence interval,
    0.142%-0.327%)
    (Wichita - mark 1 - not to be confused with the Wichita samples from the
    2-day study which are almost certainly the ones that will be used for the
    testing along with the Georgia samples) (Reeves, 2003)

    and

    - 422 per 100,000 (Fukuda definition) (95% confidence interval, 290-560 per
    100,00)(Chicago) (Jason et al, 1999)

    vs

    2540 per 100,000 Empiric criteria (Georgia) (Reeves et al, 2007)


    Comments:
    One reason that may explain a lot of the differences between the two
    Fukuda studies (Reeves 2003 and Jason, 1999) is the exclusions the CDC used:


    -------
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC419502/pdf/1471-2377-4-6.pdf

    Sample characteristics

    One subject attending the clinic was dropped from analysis
    because missing data did not permit scoring of any factor
    in the SAQC. Demographic and clinical characteristics
    of the remaining 339 subjects in the sample are shown in
    Table 1 along with the distribution of these characteristics
    by fatigue group. Over half the fatigued subjects (145/
    277, 52.3%) as well as one not fatigued subject had exclusionary
    medical or psychiatric conditions identified during
    the clinical evaluation. Medical exclusions identified
    during the clinic visit included abnormal blood or urine
    tests, abnormal Romberg test, adrenal insufficiency, bladder
    tumor, BMI = 47, cerebral palsy, chronic hepatitis,
    emphysema, heart disease within 2 years of evaluation,
    hypertension, hypothyroidism, inflammatory bowel disease,
    kidney cancer, lupus, melanoma, uncontrolled diabetes,
    rheumatoid arthritis, self-reported sleep apnea and
    narcolepsy, and major surgery within the past year. Psychiatric
    disorders included anorexia or bulimia nervosa,
    bipolar disorder, delusional disorder, and major
    depressive disorder with melancholic features.

    -----

    I believe many clinicians would find it strange to exclude people from the
    diagnosis of CFS if they have an abnormal Romberg test - I have heard
    clinicians say they use it to help confirm the diagnosis! Other exclusions
    seem questionable e.g. hypertension.


    So as I say, the exclusions may explain the difference between the two
    Fukuda studies.


    So possibly the easiest comparison is between the two CDC studies i.e. 235
    vs 2540.
    The second number is 10.8 times the first!


    Technically, it is possibly the Wichita study missed a few people. The
    Georgia study also brought in some unwell people who didn't look like they'd
    fit the criteria on the phone interview but did fit the criteria eventually.
    They said this would increase the prevalence rate by 11.5%. We do not know
    if we would get such a jump with a stricter definition.
    But if we used those figures, the prevalence for the Fukuda definition would
    jump to 262 per 100,000.


    In other words, the Georgia prevalence rate is 9.69 times the Wichita rate.
    Assuming the population is similar one could say that ***the prevalence rate
    for the Empiric criteria (Reeves, 2005) is 9.69 times the Fukuda rate***.


    Put another way, ***only 10.31% of those who satisfy the empiric definition
    would satisfy the Fukuda definition***.


    If we decide to use an (unweighted) average from the Chicago and Wichita
    samples, and increase it by 11.5%, then the prevalence rate per 100,000 is
    1.115*(235+422)/2=366.28.


    So the prevalence rate for the Empiric criteria (Reeves, 2005) is 6.93 times
    the Fukuda rate. Put another way, only 14.42% of those who satisfy the
    empiric definition would satisfy the Fukuda definition.


    And of course, many people think that the Fukuda definition itself isn't
    perfect and for example, does not have a specificity close to 100% (i.e.
    somebody could satisfy it and not have "ME" or "ME/CFS" (Canadian criteria)
    or "proper" CFS).


    Tom Kindlon

    --------
    Appendix 1:
    In the 2005 paper that defined the Reeves empiric definition, we were told
    that 16 satisfied the Fukuda definition and 43 satisfied the empiric
    definition.

    It might be tempting to use these numbers to estimate the percentage of
    those who would satisfy the Fukuda definition in an empiric definition
    cohort.

    However, I don't believe one can do it.

    For a start, there are question marks over 6 out of the 16 who satisfied the
    Fukuda definition: Reeves said these were previously excluded for having
    Major Depressive Disorder with melancholic features (MDDm) at some point in
    their lives (see Table 2: "Recruitment and Current Classifications of 190
    Subjects; 37 participants with medical or psychiatric exclusions other than
    melancholic depression excluded"). The Fukuda criteria when published in
    1994 said this was an exclusion if somebody ever had it in their lifetime.
    The International study changed this to it had to have been resolved for
    more than 5 years before the onset of the current chronically fatiguing
    illness. Each of these 6 individuals had CFS or ISF on or before 2000, so
    the MDDm would have had to have been resolved on over before 1995 (i.e. from
    1995 to 2003 at a minimum). It is very doubtful that in all cases this was
    the case. Indeed it seems quite possible it wasn't the case in any of the 6
    cases.

    So one doesn't know if 10, 11, 12, 13, 14, 15 or 16 in the cohort really
    satisfy the Fukuda definition (it's 10 if one says they could never have
    MDDm). This is of course still a useful figure as it means that if the
    samples from the Wichita 2-day study are used for XMRV testing, between
    23.26% (10/43) and 37.21% (16/43) of the samples would be from
    Fukuda/International definition patients
    .


    But the main problem with using the data in the 2-day cohort is that they're
    not a random population group at all.
    "This population-based case control study enrolled 227 adults identified
    from the population of Wichita with: (1) CFS (n = 58); (2) non-fatigued
    controls matched to CFS on sex, race, age and body mass index (n = 55); (3)
    persons with medically unexplained fatigue not CFS, which we term ISF (n =
    59); (4) CFS accompanied by melancholic depression (n = 27); and (5) ISF
    plus melancholic depression (n = 28)."

    Approx 1/4 of them had previously been diagnosed with CFS (Fukuda
    definition):

    So if one can't really tell anything about what percentage of Fukuda cases
    one would find in the Georgia cohort using the Wichita 2-day study.
     
  9. Dolphin

    Dolphin Senior Member

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    Reeves criteria - Congratulations to all those who put the issue on the map

    [I thought I'd get value out of this post which I wrote for another list. It doesn't have much new information in it, except to point out that the CFSAC criticised the CDC's empiric definition in one of its recommendations which most people here probably know about anyway. Well done to all the people on this forum who got behind the issue and Cort and his team for the forum facility. Tom]


    As many people will be aware, at the CFSAC meeting at the end of October, the committee passed a motion along the lines of the following:


    "Recommendation 3:
    The CFSAC objects to CDC's continued use of the inadequate and inappropriate 2005 "empiric" research definition for CFS. It recommends that CDC abandon the empiric case definition and the fundamentally incorrect conceptualization of chronic unwellness as being equivalent to CFS incorrect."
    (source: http://www.cfids.org/cfidslink/2009/110401.asp ).


    (I was going to wait till the last recommendations officially came out but
    I've to put my head down now for a couple of weeks to work on a newsletter)


    As people may or may not be aware, the CDC have used these criteria for
    dozens of studies since the end of 2005: All the studies from the Georgia
    cohort and all but one from the Wichita 2-day study*. This includes the
    Pharmacogenomics studies in 2006 and also the CAMDA studies.


    This issue has largely been ignored by the research community until recently. I'm open to correction but I believe that the only two references in the literature are two studies involving Prof. Lenny Jason:


    Jason LA, & Richman JA ( 2008). How science can stigmatize: The case of CFS. Journal of Chronic Fatigue Syndrome, 14, 85-103.
    http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0810C&L=CO-CURE&P=R4166&I=-3&m=11343

    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. 2009.


    So well done and thanks to those five individuals for their work in the
    area.


    But in the last 6-7 months, I believe there has been a much greater
    awareness of the issue.


    I would like to think that is partly due to the petition that was set up last April after I heard the CDC was putting together a 5-year plan:
    "Petition CDC CFS research should not involve the empirical definition
    (2005)" http://bit.ly/nYHy5 i.e.
    http://www.ipetitions.com/petition/empirical_defn_and_CFS_research

    This petition would probably win prizes in a category for "most obscure"
    petition!


    But over 2000 people signed it and I think this has helped to build momentum
    to challenge the definition.


    So thanks to everyone who signed it and particularly anyone who signed it and who also encouraged other people to sign it or supported it in some ways e.g. linked to it. It's probably bad to mention names as people will be left out but two people who got behind the petition early were Mary Schweitzer and Kasper Ezelius - they had both previously recognised problems with the criteria as of course had some other patient advocates. (I know others in more recent times have plugged the petition heavily on some forums but full names were not given)


    One thing that probably focused a lot of minds on the criteria the CDC were
    using was the XMRV research so thanks to everyone who brought that
    breakthrough about.


    Thanks to Marly Silverman of PANDORA (www.pandoranet.info) who submitted the petition to the CFSAC:
    ( http://www.youtube.com/watch?v=OLnBPGA3Lb4 at around 4.24)

    "I am delivering to you a petition by Tom Kindlon, a CFS patient advocate.
    As of today, there are 1893 signatures in this petition. The comments are an
    eye-opening account of the diversity found within the patient community. It
    could be a tool for potential CFS research"



    Thanks to all those who testified. Unfortunately I have not seen or heard
    all the testimonies but I know Dr Joan Grobstein brought the issue up in her
    memorable testimony:
    http://www.youtube.com/watch?v=WUDyby8A7tI&feature=related where she coined the phrase, "Reeves Disease", to describe those who satisfy the Reeves (or "empiric") criteria but not other CFS or ME/CFS criteria. Staci Stevens gave a two-paragraph statement from Dr Eleanor Stein (psychiatrist) criticising the definition:
    http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0911a&L=co-cure&T=0&F=&S=&P=4214


    And thanks to the members of the Patient Care Committee for highlighting the
    issue as well of course as everyone on the CFSAC.


    Fingers crossed that with enough pressure no new studies by the CDC will be
    produced using the definition and that eventually the criteria will be so
    discredited that any studies using the definition will have low status. But
    we're not there yet.


    Bye for now,


    Tom Kindlon


    * It looks like for the Tilt Table study "Orthostatic instability in a population-based study of chronic fatigue syndrome" (Jones JF, Nicholson A, Nisenbaum R, Papanicolaou DA, Solomon L, Boneva R, Heim C, Reeves WC. Am J Med. 2005 Dec;118(12):1415 published the same month empiric definition came out) that they called the patients CFS patients if they had been diagnosed with CFS in 1997-2000 but didn't mention that at the time of the tilt table testing, most of the individuals didn't satisfy the CFS criteria (they talk about more than 43 patients which is more than any of the other studies)]
     
  10. markmc20001

    markmc20001 Guest

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    thanks Tom

    thanks for all the hard work Tom. I signed both the petition this time around to the CFSAC, and the one earlier in the year that you mentioned.

    I also sent in a "write in testimony" to the CFSAC about my story and battle with CFS. THose write in testimonies are available by navigating thru the website of HHS. It is hard to navigate to, but they are there.

    I do whatever I can to help out.

    Let's not relax now and keep the heat on!

    Best Regards,
    Mark
     
  11. Dolphin

    Dolphin Senior Member

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    Thanks.

    That's great.

    A direct link is:
    http://www.hhs.gov/advcomcfs/meetings/presentations/091029.html

    That's great. I just replied to somebody there a few minutes ago who asked was I still looking for signatures - I said I was.

    But there will be need to do other things. I'm not the sort of person who usually thinks a petition will solve everything but feel it has a value in this case, in a situation where the problem was being ignored.
     
  12. kolowesi

    kolowesi Senior Member

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    testimony not there

    I guess it's probably a good thing my testimony wasn't in there, but maybe some others were missed that would have been a good addition.

    Also, I wish the comments on the petition had worked for everyone, mine and several in my family's were the gray boxes. But at least we got the message out and I feel good about it.

    Tom, I hope you get some well-earned rest.

    Kelly
     
  13. Dolphin

    Dolphin Senior Member

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    One can ask for it to be put up.
    I know one person whose testimony wasn't up who has had it confirmed that there submission was circulated. Mine wasn't up for the last meeting initially but I wrote in and now it's up.

    Yes, it is very frustrating and something that hits me every time I look at the new signatures. I'm not sure if I mentioned this above but it is something I am frustrated by. And would like to know of other petition sites for the future (although am in now particular rush to do another one myself).

    Thanks. Won't be for a while. Am writing a newsletter at the moment which I need to get finished relatively quickly as we sell Christmas/Holiday cards and need to get the forms out there (although did send the forms with the Autumn newsletter already).

    Bye.
     
  14. shrewsbury

    shrewsbury member

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    ensure CDC uses appropriate defn and samples for xmrv research

    I have been trying to clear out my backlog of info from co-cure and came across the following that Tate Mitchell posted to co-cure on Nov 26 09.

    I think the reminder to contact all our agencies to ensure the CDC uses appropriate definitions and to offer samples is a good one. I hadn't done it before seeing this.

    And I love the list of emails. Its incredibly useful. Thank you Tate!

    (my bolds and bullets)
     
  15. starryeyes

    starryeyes Senior Member

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    Excellent post IF and thanks for making this easy for us to do by putting it all in one place. Uno! :O)

    We must make sure that we've done everything we can so when the (you know what) hits the fan we will know we tried our best. Who knows, we may really have an effect too.

    Could we construct a template letter here for all of us to use? and if so, IF, can you put the sample template letter into your first post here and change it as you see fit? Pretty please? (tee bats her eyelashes). :)

    PS. Don't you think the CAA should have been on this already? What do they do for those ginormous salaries they make? (Yes Cort, I've read your lists and there's some good stuff there but they should be on top of stuff like this!) :mad:

    Come to think of it, all of these organizations we're supposed to be emailing about this here should already have template letters in place and should already be pushing us to contact the right parties. I'm madder than mad!

    tee
     
  16. gracenote

    gracenote All shall be well . . .

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    check out this other thread

    This is already being discussed in a thread in General ME/CFS News: "Kim McCleary: Open letter to CFS community" starting around post 36. There is an extensive continuing discussion. Just one of the earlier posts.

    Post 38:
     
  17. fresh_eyes

    fresh_eyes happy to be here

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    Having read the other thread, I have not gotten the impression that the CAA is prepared to make any pre-emptive statements about what would constitute a bad or good replication effort.

    Does anyone have a different impression?

    If they are not going to do it, we need to draft a statement ourselves, under our own imprint. I'm hoping that the site I'm starting, CFSOUT, can serve as a platform for those kinds of efforts, by providing a sense of organizational validity to our grassroots efforts.
     
  18. jspotila

    jspotila Senior Member

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    CFIDS Association is advocating on this

    Thanks, gracenote, for linking in the information from the other thread. At the risk of repetition, here is what the Association has been saying since October about replication studies:

    As I stated in another thread, my understanding is that the CDC replication work is part of the HHS XMRV Working Group effort, and will be using samples from WPI.
    http://forums.aboutmecfs.org/showpost.php?p=26602&postcount=69
     
  19. Dolphin

    Dolphin Senior Member

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    The CDC CFS team loves to see its research as superior because it uses random samples from the population. It seems strange if they don't use the samples that cost a lot of money to collect - it would possibly mean they are admitting that the empiric/Reeves criteria are not the Fukuda criteria - they usually say they are a version of them. I know a proper replication might use the Canadian criteria also but I think some studies won't do this.

    Anyway, I am not at all convinced that they won't use the samples from their registry, the Georgia study, the Wichita 2-day study, etc (last two cohorts are empiric/Reeves criteria and presumably the registry samples are also as they say the empiric/Reeves criteria are the current criteria the CDC uses).

    And of course if they don't use them, it is perhaps admitting that the samples aren't Fukuda criteria samples. But not sure they won't test them given the statment at the CFSAC, etc.

    A problem would be if they mixed different samples together e.g. some blood from "proper" CFS patients and then other blood from the Reeves/empiric criteria patients most of whom almost certainly don't have CFS.
     
  20. shrewsbury

    shrewsbury member

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    Hi Jennie,

    I hope I'm not asking you to repeat yourself. Haven't been able to follow this as closely as I'd like to.

    Has the CAA sent a formal request to the HHS XMRV Working Group Effort clearly asking:

    1. that they follow the same procedures that WPI did, including only using samples that meet the same definiton, the FUkuda and the Canadian - NOT the Reeves adapted FUkuda

    This could be supported with research that shows that the definitions are not the same. And also the fact that no international respected research has used the Reeve's definition.

    2. that they do NOT use the samples that the CDC has as they do not meet the definition

    3. Also, I don't know if the CAA has any samples. If so, you could offer them samples to use. It also might be very useful to supply them with a list of everyone whom you know that has valid samples, along with contact info of course. Even better to contact those agencies first and indicate which would be willing to supply them with samples.

    I think including the transcripts and perhaps video of the Klimas /Miller interaction from the CFSAC meeting would help support your message.

    I strongly believe that you need to be on record NOW both advising them of the problems with the CDC's definition and samples, and showing that they can obtain valid samples.

    Reacting after the fact would accomplish little. If you do this now, it could accomplish a lot.
     

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