"New" study linking CFS to early childhood trauma...

Discussion in 'Fibromyalgia Main Forum' started by bjsmit1, Jan 8, 2009.

  1. bjsmit1

    bjsmit1 New Member

    Many of you have read or heard about these recent findings by the "researchers" at Emory University, in coordination with Bill Reeves from the CDC.

    I wanted to hopefully shed some light on the issue. I'm EXTREMELY upset about this report, the continued failure of an adequate response to the public health crisis that is CFS by the CDC, and most importantly, Bill Reeves. In my strong opinion, he is a megalomaniac, that just "doesn't get it".

    This is absolutely reprehensible; I've commented on Bill Reeves from the CDC in the past, but in my strong opinion, he needs to be ousted now. I am outraged...

    The CFIDS Association of America dealt with this same study in November 2006, and in the latest study, the researchers addressed NONE of the weaknesses that were identified back then.

    The CFIDS Association is actively addressing this recent report with the CDC's Division of Media Relations, especially when other studies regarding physiological issues get little to no recognition.

    The following url details this issue in 2006:


    Brian Smith
    Board of Directors
    The CFIDS Association of America

    [This Message was Edited on 01/09/2009]
  2. bjsmit1

    bjsmit1 New Member

    The following is the text of the previous url, detailing the response to this issue in November 2006.

    Limited Studies of Early-Life Stress Put in Context

    Two studies published in the November 6, 2006, issue of the Archives of General Psychiatry associate trauma in early life with CFS and CFS-like illness. However, each study has important limitations to consider and the authors’ conclusions should not be overgeneralized.

    Both new studies focused on a narrow set of adverse events and excluded others, such as infection, serious injury and malnutrition, shown to be important in other conditions, and that warrant further exploration in CFS as well.

    Adverse events in early childhood have been shown to be predisposing factors in other serious conditions, including cardiovascular disease, diabetes and depression. A report compiled by the National Scientific Council on the Developing Child at http://www.developingchild.net/papers/excessive_stress.pdf summarizes this literature in layman’s terms. No broader discussion of this literature is included in either paper and thus is being overlooked by the media.

    Studies like these that rely solely on unverified self-report of childhood experiences occurring 35-50 years earlier, particularly of people with later-life physical and psychological health issues, have many limitations that are well-documented in the medical literature. Although the mean age of subjects in the Heim study was 50.5 years and subjects in the Kato study were 42 years or older, this limitation is only acknowledged in the Kato paper, as described below.

    Christine Heim, PhD, of Emory University is the lead author of a study titled, "Early Adverse Experience and Risk for CFS: Results from a Population-Based Study." She is no longer affiliated with the Centers for Disease Control and Prevention’s CFS Research Group. Dr. Heim describes the small study of 43 CFS patients as "exploratory" and states that results "should be considered as preliminary." The researchers found that CFS cases reported significantly higher levels of childhood trauma and psychopathology compared to healthy controls. Exposure to childhood trauma was associated with three-to eight-fold increased risk for CFS across the trauma types assessed. The authors state, "our results also clearly demonstrate that not all cases of CFS have a history of childhood trauma."

    The second study, by Kenji Kato, PhD, et al., of the Karolinska Institutet, presents similar findings from a study nested within a Swedish Twin Registry of 19,192 twin pairs born between January 1, 1935, and December 31, 1958. All twins were screened for the symptoms of CFS by telephone, but investigators did not conduct thorough physical and mental status exams to confirm CFS diagnosis. Thus, conclusions are based on "CFS-like illness," and not CFS as strictly defined. In all, 447 subjects fit the description of "CFS-like illness." Study results indicate an association between "emotional instability" and self-reported stress and chronic fatigue/CFS-like illness. In examining differences between twin pairs, the researchers reported that, "certain genetic propensities may ameliorate or exacerbate the effect of stress. At the same time, genetic influences on emotional instability also contribute to the development of fatiguing symptoms." The authors state that "a number of cases might have been misclassified owing to recovery or recall bias by the time of the interview."

    As the November 3, 2006, announcements by CDC director Dr. Julie Gerberding underscore, the important story about CFS is much larger than any single study or pair of studies. The media coverage over the last week, of which only a small fraction relates to these studies, reflects the bigger picture too. That said, all people, including the subset of CFS patients described by these studies, whose lives have been affected by trauma in their childhood years certainly deserve compassion and careful study so that the biological and psychological impact of these early-life events is better understood.
  3. TeaBisqit

    TeaBisqit Member

    What they are doing is taking one symptom of people who are just chronically tired and trying to lump them into our illness. So they deliberately use the term Chronic Fatigue to confuse people and make them think it's the same thing as CFIDS, Chronic Fatigue Immune Dysfunction. They aren't the same thing at all. If you have chronic immune dysfunction, you have a medical condition. If all you have is chronic tiredness, there could be a million and one reasons why you just have that. There are people who are just depressed that are chronically tired, but it's in no way the same thing as what we suffer from. But all these shrinks want to lump us all together and ignore the fact that we have a real biological disease with a million symptoms.
  4. findmind

    findmind New Member

    These are not scientific articles built upon empirical, biologicallly laden testing; they are, instead the steadfast attempt by the CDC to lump anyone with fatigue of any type into the "CFS" label.

    Once again, folks, originally, "CFS" was M.E.; over the past 20 years it has been continously watered down by the CDC until it is now ANY illness that causes fatigue. Incidentally, that includes just about any illness.

    So, if you have cancer, you also have 'CFS'; if you have MS, you also have 'CFS; if you have SLE (lupus), you also have 'CFS'.

    This article by Heim was in today's Science Daily Newsletter also. Now, tell me, how is this "raising awareness" of CFS? Well, it is...but not of CFIDS or M.E.

    Don't be gullible, and start getting ready for this year's so-called "Awareness Day" campaign: we must have advocates that go to our representatives with the alternate theory...that there is CFS and there is CFIDS/M.E, and they need separate funding and a re-integration of the WHO's classification of M.E.into the U.S.'s medical code system.

    The CAA better stop enabling the CDC and get on the true bandwagon: let the shrinks deal with fakey "CFS"!

  5. simonedb

    simonedb Member

    what should we do?
  6. findmind

    findmind New Member

    If you're asking me, I reply thus:

    Start preparing your letter now. It should ask for three things:
    a. Reinstatement of the WHO's classification of M.E. into the U.S. medical coding system.

    b. A separate funding allocation for CFIDS/M.E., which is not CFS.

    c. An investigation into the CDCs use of their funding over the past 20 years, which has only served to obfuscate, deny, and ridicule patients with true CFIDS/ME, the original name of this devastating disease.

    That's it...simple, right? Whoa...not if the CAA uses their legion of "helpers/supporters" to continue helping the CDC do the wrong thing, as stated in (c.) above.

    [This Message was Edited on 01/12/2009]
  7. bjsmit1

    bjsmit1 New Member

    I am way too exhausted and sick to respond to your statement that "The CAA better stop enabling the CDC and get on the true bandwagon: let the shrinks deal with fakey "CFS"!" as well as "That's it...simple, right? Whoa...not if the CAA uses their legion of "helpers/supporters" to continue helping the CDC do the wrong thing, as stated in (d.) above."

    Hopefully, I'll feel better tomorrow to respond, but you could not be further from the truth with regard to The CFIDS Association of America "enabling" the CDC. As someone who is "in the know", I can assure you that the CAA is not a fan of the CDC, their response to CFS, as well as Bill Reeves.

    Like I said, I'm not feeling well, and will provide a much more detailed response regarding this in the near future, but I wanted to let you, as well as others know that your statements regarding the CAA are simply not true.

    I apologize for the short response, and will address your concerns more appropriately soon.

    Brian J. Smith
    Board of Directors
    The CFIDS Association of America
  8. findmind

    findmind New Member

    I am sorry you are feeling so sick.

    Many here are divided about supporting the CAA any longer, so my comments are only my opinion.

    I look forward to hearing your discussion, but I really don't want to argue with anyone. I supported the CAA for over 10 years, and I never got anything for my money. So I tend to be a little uptight about them.

    I feel we are really going backwards and all our energy has gone down the drain. I still can't find a dr. in this city of over 1.5 million that believes "CFS" is anything but depression and inactivity.

    I hope you can rest and get some energy back, and I appreciate your reply.

    [This Message was Edited on 01/12/2009]
  9. outofstep

    outofstep Member

    Reeves has got to go, and we don't have time to wait until karma comes back to bite him in the behind like it did Stephen Straus at the NIH. How do we get rid of him?
    There are psychologists/psychiatrists who are basing their entire careers on their "theory" that ME/CFS is a psychiatric disease and there is a lot of research $ involved, including $ from pharmaceutical companies which Emory faculty members seem to be profiting from. I don't know if these people really believe that ME/CFS is psychiatric, or if they just do the research where the $ is. Either way, they are willfully ignoring the bulk of research that finds otherwise. The question is-how do we wrest this disease from these people? I think that what the WP Institute is doing is a good start by using the Canadian Definition and the name ME/CFS, and so they are not even looking at the same disease as the CDC.
    The release of this "abuse" study while the FDA is deliberating re: Ampligen seems intentional on Reeves' part. Like Brian Smith said, these ridiculous psychiatric studies usually get a lot press (probably because of the controversy involved and because they are easier for the public to understand) while genetic and other biological studies receive very little. I used to think that Reeves was just stupid, but it seems clear now that he is vindictive.
    Brian, thanks for expressing your outrage here. If there is something that the CFIDS Association is organizing or suggesting for us to do to rectify the situation please let us know.

  10. outofstep

    outofstep Member

  11. findmind

    findmind New Member

    Thanks for reminding us of the WP Institute and their use of the Canadian criteria for their studies of CFidS/ME. That is important for us to keep in mind.

    I wonder, though...if they find the abnormalities and a treatment, the CDC would probably have to approve it too, wouldn't they? I mean, they are who the doctors are listening to, not the true researchers.

    I despair, I guess, that the CDC will ever appoint someone who is dedicated to doing the review of all the research already done and then continuing on until they give us some answers and treatment options beyond CBT and GET.

    Isn't Dr. Vernon a previous employee of the CDC, and is now medical director at the CAA? Maybe, hopefully, she learned what was going on over there and will be instrumental in changing the course of the CAA to a more stringent and strident research course. I hope.

    Hope is all I have left...
  12. outofstep

    outofstep Member

    I do think that it is possible for the CDC to change, because the NIH had a track record that was almost as bad and as soon as Stephen Straus "departed" their research changed for the better. And I do agree that the CDC will have to change their viewpoint as soon as they look foolish, ie. when everyone else stops looking for a psychological cause, regardless of what Reeves thinks. This could be quite soon-but in the interim it seems ridiculous that they are receiving money to conduct this useless and damaging "research" when those funds could be better used anywhere else. I also agree with you that their chronic misuse of funds needs to be very severely dealt with-maybe this will be Reeves' downfall? I am extremely suspicious of his motives for working with Emory's psychiatric dept. as well, especially when their former director received $$$ from drug companies and did not disclose it until asked.

    I give Dr. Vernon a lot of credit for leaving the CDC to work for the CFIDS org.-I don't know her reasons but can speculate, and can only conclude that she is on our side. And I do understand why the CFIDS org. has tried to work with govt. agencies when they are the ones receiving millions of dollars for research. Sometimes you can infiltrate agencies and make them work for you-it looks like that's what the CFIDS org. attempted and was foiled by Reeves and the culture at the CDC. But the CFIDS org. is currently funding relevant research-none of it psychiatric-and have been lending support to other things like the "Viruses in ME/CFS" conference that presented a lot of cutting-edge research. I give them props.

    I do think that there will be a huge breakthrough in the near future. It's really hard to wait though, especially when these psychiatric studies keep coming and getting press. My big concern with the timing of this latest Reeves psychiatric study is that the FDA is supposed to make their decision re: Ampligen on Feb. 25th, and it seems unlikely that the WP Institute will present their study results before then. The FDA has a lot of reasons to approve Ampligen regardless and hopefully they'll do the right thing.

    The WP Institute gives me tons of hope-both with their approach and their solid funding. I do think that we have a lot of reasons to be hopeful.
  13. SDD

    SDD New Member

    I agee with Brian Smith. The CAA is not a fan of the CDC :

    CFIDS Association of America CEO Calls CDC Chief "Shameful"


    [This Message was Edited on 01/12/2009]
  14. bjsmit1

    bjsmit1 New Member

    Sorry for the delay in responding to your post -- I was in bed most of the weekend.

    I'm not here to argue either; I apologize if my post came across that way. I'm just one person who is trying to help conquer CFS. I was, and am, outraged about the latest "research", as well as Bill Reeves' involvement.

    I also get kind of tired of defending The CFIDS Association to individuals who are absolutely uninformed, or posting things about the CAA that are completely not true. I'm not directing this at you, I'm just speaking in general. If individuals have an issue with the CFIDS Association, it is very easy to spend 5 minutes on the web researching, and then drawing their own conclusion. Again, I'm not directing this at you, and I apologize in advance if it seems that way.

    I'm not sure why you feel that The CFIDS Association of America is enabling the CDC. You stated, "The CAA better stop enabling the CDC and get on the true bandwagon: let the shrinks deal with fakey "CFS"!" I have addressed this in other posts, but hopefully I can shed some light on the subject.

    Also, you stated that a solution to the problems with the CDC, etc. is, "c. An investigation into the CDCs use of their funding over the past 20 years, which has only served to obfuscate, deny, and ridicule patients with true CFIDS/ME, the original name of this devastating disease."

    You then stated that in order to achieve your point "c.", the CAA would need to stop helping the CDC do the wrong thing. You state, "That's it...simple, right? Whoa...not if the CAA uses their legion of "helpers/supporters" to continue helping the CDC do the wrong thing, as stated in (c.) above."

    I'm assuming that you think that the CFIDS Association of America is "enabling" the CDC because they have tried to establish and maintain a good working relationship with them in the past.

    In the late 90’s, the CFIDS Association, basically driven by the efforts of Kim McCleary alone, uncovered a huge accounting scandal revealing the misappropriation of nearly $13 million by the CDC. The money had been earmarked by Congress for CFS research within the CDC, and when Kim McCleary began following the money, and investigating the progress of the supposed CFS research, the CFIDS Association discovered that in reality, many researchers were using the earmarked funds for their pet projects that had nothing to do with CFS research. An audit by the GAO followed, and the CDC was ordered to pay back the misappropriated funds from 2000 – 2005. Because of this payback period, there was an infusion of funds for CFS research at the CDC during this time, and in 2006 the CDC launched a huge CFS Public Awareness Campaign. It appeared that the CDC was taking CFS seriously: Dr. Suzanne Vernon established the CFS Computational Challenge (C^3), which produced an unprecedented 14 journal articles in Pharmacogenomics in the spring of 2006.

    Like I said, it appeared that the CDC was finally starting to “get it”; they are the largest and most resourceful entity in the world to tackle CFS, so it only makes sense that the CFIDS Association would try to maintain a working relationship with them, and hopefully be able to convey to them the issues of the CFS patient community. At the time, the CDC also had a Provider Education course on their website for healthcare practitioners to learn more about CFS, and to earn CME credits. Last year, the CDC lost the contract for the Provider Education program; the CFIDS Association established a new program, which is now available through Medscape, and offers continuing education credits. It was launched in October 2008, and within its first three months at Medscape, 13,404 healthcare providers have completed the module for credit. During the four years that the module was available through the CDC, only 1533 healthcare providers completed the course.

    If agency “XYZ” had millions of dollars every year, directed specifically for CFS research, I would do just about anything to gain their favor, and to be in a position to influence them.

    In your post, you suggested, “c. An investigation into the CDCs use of their funding over the past 20 years…” I think this is a great idea; this is exactly what The CFIDS Association has been doing for years. They have been policing the CDC’s funding and spending, and to be honest, without Kim McCleary and the CFIDS Association, the $13 million misappropriation that occurred ten years ago would have never been uncovered. And without McCleary and the CAA’s continued policing of the CDC, spending irregularities would have never been uncovered in October 2008. The url’s describing this are the following:



    In 2007, the CDC budget for CFS research was $4.7 million, and the NIH budget was $4 million. Of that, no quality research was performed. With Kim McCleary’s testimony at the October 2008 CFSAC meeting, it appears why quality research has not been performed, and the individual(s) responsible for this lack of research. But again, this irregularity in research at the CDC was uncovered by the CFIDS Association – so when I say that your statements are absolutely not true, regarding the CAA “helping” or “enabling” the CDC, this is one example of why they are incorrect.

    In November 2007, the CFIDS Association hired Dr. Suzanne Vernon, PhD as their full-time Scientific Director. In early 2008, The CAA announced the “Campaign to Accelerate CFS Research”, with the goal of raising $1 million in 2008, specifically directed to research. Against many odds, the CFIDS Association hit the $1 million milestone at the end of August, and last month announced six new studies that they are now funding. Dr. Vernon has been instrumental in this process; she has identified gaps in research, built collaborations among researchers, etc. Before this, she spent almost 18 years at the CDC; her last 10 years at the CDC was dedicated to CFS research, so not only is she extremely knowledgeable about the science of CFS, but she is able to tap into a whole network of scientists, as evidenced last spring by the tremendous response from researchers worldwide to the CAA’s research initiative. More can be read about the CFIDS Associations research program, as well as the six new studies they are funding, at the following url’s:



    Finally, you can read some of my other posts about all the other responsibilities that The CFIDS Association of America is tasked with, and the many steps they are taking to help the CFS patient community. The following are url's to these posts:




    I hope I have provided you some info to make a more “balanced” assessment of the CAA. If you’re still unclear about any issues, please feel free to ask.

    Brian Smith

    [This Message was Edited on 01/12/2009]
  15. bjsmit1

    bjsmit1 New Member

    findmind, I sense that you're frustrated; and with good cause. I too can not find a local physician to treat me, in a city of 1 million, and 2 university research hospitals. I travel to NYC 2-3 times a year to see a physician, who then kind of "quarterbacks" my care with my local physician.

    I am frustrated almost every day -- it is what keeps me going. When CFS knocks me down, my anger and frustration regarding CFS, the failed response by our government, the lack of understanding --these all empower me to get back up, and to keep fighting. I know I am not depressed, and I refuse to let CFS define who I am.

    If you have time, take a look at video of my testimony before the CFSAC in May 2008. It summarizes my frustration due to CFS pretty well. The url for it is:

  16. Rafiki

    Rafiki New Member

    I just saw your testimony and you were fantastic!


    Well done, you!
  17. bjsmit1

    bjsmit1 New Member

    Thanks for the feedback regarding my testimony. I just hope that it furthers our cause.

    Brian Smith