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Personality Features and Personality Disorders in Chronic Fatigue Syndrome: A Populat

Discussion in 'Latest ME/CFS Research' started by V99, Jul 28, 2010.

  1. floydguy

    floydguy Senior Member

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    Personally I think it's time to drain the swamp (as Rummy might say) and work towards getting CDC funding slashed. Clearly they aren't helping anyone and just wasting money and creating needless empires and kingdoms. They should be investigated by the Inspector General and perhaps become the focus of entities like Citizens Against Government Waste.

    We should remember that the CDC really exists to prevent pandemics and mass disease. At the heart of their organization is credibility. There must be confidence in the organization so that the sheeple will follow what the CDC tells them to do. If they lose their credibility they will be useless.

    The powers that be won't tolerate the CDC's credibility getting trashed by something like CFS.
     
  2. muffin

    muffin Senior Member

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    Proposed plan of action - please add/comment

    Guys: We must respond to this "stupid as sin study" for one reason: the idiot doctors and public will read it and use it against us. Those with a brain in their head will see it for what it is: a vicious attack against the CFIDS sick by a sociopath and his followers. It's obviously piss-poor science but if one doesn't know or understand the whole situation they may be led to believe the garbage in this "study".

    So we need an Action Plan to counter the damage that this garbage will do to us.

    1) Several of you have agreed to write a measured response to the journal attacking point-by-point Reeves' statements. You guys know to cite and cite like crazy. A smart person went and found those three other articles that refute how crazy CFIDS people are and they should be cited in the study. Not only do those three studies counter what Reeves says, but shows that this little group of nuts did not do any real scientific research - they just threw this crap together from other documents to attack us. Those responding to the study might ask/demand/request that this study be retracted due to its lack of scientific failures/methodologies, etc. (or whatever words work to that affect)

    2) We do need to email the following people and demand that Reeves retract this article since it was written under the CDC label. Also, we need to demand that Reeves be retired from the CDC. Again, calm, measured reasons for why Reeves must be dismissed/retired from the CDC.
    Several months after Reeves was moved to the Shrink side of the house I emailed Frieden and told him that Reeves needed to be retired and gotten out of the CDC because of the damage he was GOING to do to both the CFIDS sick and the CDC (and their credibility and reputation). Well, this study is proof enough that Reeves is making the CDC look foolish and Frieden needs to get Reeves OUT of the CDC NOW. We all got Reeves removed from the CDC/CFS program but now he is in a better position to really make us look like nuts. So, time to email like crazy and demand that Reeves be retired/dismissed, etc from the CDC now. That study should be enough proof that Reeves is now an old, demented, vindictive sociopath. If Frieden can't see that, well, there is no hope for the CDC.

    I would put the study at the bottom of the email so that the person reading the email knows what we are talking about. I have already emailed these people but it would be a much bigger bang if we ALL emailed and complained about the study and Reeves. Fill up those mailboxes and force them to see what the current crisis is with CFIDS and Reeves.

    - Thomas R. Frieden, (CDC Director) ftdh@cdc.gov
    - Kathleen Sebelius, (HHS, owns the CDC) Kathleen.Sebelius@hhs.gov

    3) I did email Elizabeth Unger yesterday and told her that the CDC/CFS website was her responsibility and it needed to be cleaned up. Probably a waste of time since I would bet she's hiding in her office or a broom closet and praying for her retirement date to arrive. But hey, email her if you think it might help or if you want to vent. Be constructive though.

    4) I would NOT make this study public, as Tina pointed out. This stupid study should only be provided to other CFIDS/ME Advocacy orgs so that they too can hit on the CDC. But don't let this study go out into the public where it can be picked up and used against us by idiots. And, if you do see it in an article or blog, respond about how poor the study is and give reasons (see the many outstanding reasons you all wrote about on this thread). Reeves and his band of morons actually made up terms to use, which just blows me away. Attack the methodologies, the contradictions, and refute with the studies that show the CFIDS sick are actually more sane/stable than the general population, etc.

    5) I have made it a point to discredit the entire CDC and not just the CFIDS side. Where possible, I have gone after the hyped Swine Flu and the huge waste of money on the research and the now wasted vaccines (over $500Million worth of vaccines destroyed in the US alone). I hate it, but I do think discrediting the whole of the CDC helps the CFIDS cause. There is a huge amount of waste at the CDC and many, many journalists are going after them for that alone. Point out the lack of credibility that the CDC has with the American public. Sucks, but it is true and it does help further damage anything that comes out of the CFIDS side. (I really would rather see the CDC fixed, but that's not happening with Frieden, yet).

    Ideas??? You all know we MUST respond and respond NOW. This was Reeves last parting shot at us for giving him so much grief over the years and then getting him removed from the CDC/CFS program. This move prob. did not help his reputation or his sick little ego. So, this is how he is going to attack us and get even. Reeves really is a vindictive sociopath and he needs to be removed from the CDC.

    I do think we have to go forward with some sort of legal actions against the CDC and maybe even DHHS. We need to find an attorney who will take on a class action against the government (and/or) individuals within the government for deliberate malicious malfeasance or whatever the correct legal terms are. I fervently believe we have to do this. I believe that JustinReilyESQ was looking into this but if others with lawyer family members (or legal backgrounds) could also see what can be done, that too would be great. I think we do need to bring some sort of legal action to force the CDC to show their documents/data and to bring this whole thing to the attention of the public.

    (As an aside) I am not just talking about CFIDS but the Retroviruses that have been discovered by Defrietas and by Mikovits (and others) and covered up by the CDC and then funding removed for 30 years by the CDC and NIH. IF those Retroviruses are indeed as deadly as we/I believe them to be, then the public (US/Worldwide) MUST know about them and force action to be taken. In my guts I believe that XMRV and the other retrovirus(es) may be the cause or a large part of the cause for many different cancers and other diseases. And the CDC/NIH/HHS allowed them all to be out in the public and in the blood supply and blood products for over 30 years. This is a real travesty to everyone. I play this part up big time.

    Sorry about the disjointed writing above. One of my dogs jumped on me this morning and woke me up before my brain was ready to be gotten up. I know you guys are super smart and will understand the gist of what I am trying to say. Please, make comments and also add to what you think must be done about this study. Again, I think we must respond hard and fast to this study before it does get into the public domain and do some very real damage to us. Idiots wrote the study and idiots will read and use the study against us.

    I also sent Frieden and Sebelius the study that came out yesterday on XMRV being considered contagious to humans. I put that study under the Reeves study to show how real science is working versus psychobabble by a demented sociopath. Now that positive study with hard science IS what I would go very public with and spread around the internet. A deadly virus contagious to humans? That is a terrifying situation and one that the media and public would seize upon. I leave out the CFIDS part and just concentrate on the fact that there is a very deadly and contagious virus out in the public and in the blood supply and that 1 in 14 people are carriers (can not remember where I saw this 1 in 14 number).

    Enough rambling from a tired chick. Thoughts please?? Super smart people please correct me and/or add - I don't have a brain anymore.
     
  3. Greggory Blundell

    Greggory Blundell *****

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    Sorry if I missed this earlier, but has the CAA decried this "study"yet? I agree with muffin that we must each speak out with emails, but if our own advocacy organization does not strike back in our name and for our cause and against this sinister nonsense, then I fear our credibility is diminished.
     
  4. taniaaust1

    taniaaust1 Senior Member

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    Wow.. i bet they were highly disappointed at that result. 29% of those who have a serious illness ending up with a personality disorder, isnt a large amount.

    i myself ended up with borderline personality disorder due to something the ME (XMRV?) has done with my brain or how others have traumatised me due to it.. umm probably due to trauma due to the stupid things the CDC puts out there which influences doctors and the public to be bias and negative towards us. (i've been away last couple of days due to the BPD which ended up putting me into a hospital stay again, i made a mess of my arm). How many of us have now got things like BPD (which many think is caused by invalidation and abuse) or post traumatic stress disorder DUE TO the CFS!!

    Pathetic study from the CDC, just the kind of thing I expected from them. Wasting the CFS studies funding once again. They should be held accountable for wasting CFS funding monies and held accountable for how they are making others treat us and hence the mental issues some of us THEN end up with.

    Could the CDC be sued for the issues the crap they put on their site is causing to patients??
     
  5. muffin

    muffin Senior Member

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    I also do agree that the tiny $3Million that the CDC gets for CFIDS needs to be removed from them. The CDC should have nothing further to do with CFIDS at all and in any way. IF the CDC wants to believe that CFIDS is a mental condition then it does NOT belong at the CDC, right? No sense in tracking or dealing with a mental condition. So if Reeves wants to play that game with CFIDS at the CDC, then maybe we should demand that CFIDS research be removed from the CDC. Recognize the consequences of removing CFIDS from the CDC - other Federal orgs might follow and other damage may be done to CFIDS. However, at this point the emphasis is on Retrovirus research - for cancers, diseases and CFIDS. That may make up for the loss of CFIDS at the CDC and other federal health orgs. Might. Don't know.

    Again, I do believe that Reeves did everything possible to kill off funding for CFIDS real research to hide huge damage. I do believe he expected the budget and research to hit ZERO by the time he retired and then the CDC and other Federal health organizations would not bother anymore with CFIDS. If you aren't bothering with research on something it no longer exists and what ever you are concealing will be concealed forever. Let's look at the UK document that has been locked down for 83 years? What does that tell you? It means that the document and the damaging info it contains will be closed until Reeves, Weasel, White, Sharpe and others involved are long dead and we are dead and can't do a thing about what ever all they have been up to for three decades. The public needs to know about this situation as well. Paranoia does not enter into this one, does it?
     
  6. Dolphin

    Dolphin Senior Member

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    Note: if people want everything (or most things) challenged point-by-point, there could be need for more than one letter. It might be hard to get everything into one letter.
     
  7. muffin

    muffin Senior Member

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    Sorry to Cort, but...I have no use for the CAA. They really are reporters as somone noted and not true advocates. They react instead of going on the offensive. What has been accomplished at Congress for any funding or investigations into the CDC and CFIDS/Retroviruses? Nothing. So, I expect nothing of value from the CAA and know that WE SICK must be the ones to fight our own fights now. Do not bother or look to the CAA, they can't or won't help. I'm sorry to say this since they really were a great group years ago, but not now.

    WE MUST FIGHT our own battles now. Don't wait for others to fight for you. Won't happen. So, get mad and start thinking, writing, researching, etc.
     
  8. Dolphin

    Dolphin Senior Member

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    The CDC and GET, CBT and compliance

    As I have observed before, the CDC CFS team seem to have been taken in that GET and CBT are the treatment strategies to recommend at this time.

    In this paper, they link the findings with personality disorders and bring up the issue of compliance.

    I think this is potentially risky as the treatments are potentially risky. It might mean more pressure is put on patients to do GET and CBT and patients are listened to less if they are non-compliant.

    ============
    Compliance and CBT/GET

    Discussion

    [..]

    [..]

    [..]

     
  9. muffin

    muffin Senior Member

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    Agree Dolphin. You and someone else (can't remember who, but a great thinker/writer like you) should write the first response. Actually, could you please write the first response? Then we do need more outstanding, well researched/cited and written letters that back up your letter and also cover what ever else you left out. But, the first letter must be strong and hit hard in ways that can not be refuted.

    So, who else is up to the task for writing a letter to this journal on this study? Those with a strong science/medical background or understanding would be most valuable. I do think that many good points have been made in this thread so we can grab and use many of those as well.

    Help!?!?! Who else will step up and write a strong response???? I think we need a number of powerful letters.

    I am NOT going to respond to this study as I fear messing it up. I think our best and brightest must take the lead on this. People like me can scream and email but I can not and should not respond to things like this that really require serious analysis and writing. I just can't do this type of analysis anymore. sucks.
     
  10. Dolphin

    Dolphin Senior Member

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    There is no mention whatsoever of this study in the paper.
    CFS isn't really that active an area in terms of the number of studies that are published. This paper appeared on PubMed Nov 2008. I think it should have been mentioned.

     
  11. Tammie

    Tammie Senior Member

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    Well, besides the fact that Merck does not list it as an actual disorder, the CDC "study" stated clearly that they took the personality disorders mentioned from the DSM and as I said, it's NOT in there!....and they also clearly stated that the instruments they used to measure these disorders were based on the DSM, so again if they are not in the DSM, then the instruments could NOT measure this at all.
     
  12. Dolphin

    Dolphin Senior Member

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    A few other random observations:

    Reference 6 doesn't seem to be the correct reference.

    This suggests the instrument could lead to overdiagnosis.

    Unusual phrasing. And 29% isn't that near.
     
  13. Dolphin

    Dolphin Senior Member

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    Thanks but new voices might be better to write letters.
     
  14. Tammie

    Tammie Senior Member

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    definitely interested
     
  15. muffin

    muffin Senior Member

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    Dophin is dead-on correct - there is a trend in what the CDC/CFS/REEVES is doing now

    The CDC and GET, CBT and compliance -

    They have a new strategy to nail us and we have picked up on where they are trying to go with this.
    First change the website so the public/doctors can see the new stupidity that the CDC/CFS/REEVES are pushing. This includes the ultra dangerous GET and the worthless and wasteful CBT. Next, put out a study right after changing the website and tell people that the CFIDS sick are mentally ill, don't follow doctor's instructions (per their website), and rebelious, which when added to the mentally ill part makes us look like dangerous nuts. So, will the US follow the UK and put us all in psych wards instead of treating our very real illnesses and symptoms?

    Before I forget- We also need to push to get the NIH and FDA studies published ASAP and without government intrusion (NO CDC/NIH damage to those documents). So, let's not allow these studies to fall away - push on getting them published until they are published with no instrusion/damage.
     
  16. muffin

    muffin Senior Member

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    Tammie
    View Profile View Forum Posts Private Message View Blog Entries View Articles Add as Contact

    Senior Member

    --------------------------------------------------------------------------------

    Join Date:Sep 2009
    Location:Woodridge, IL
    Posts:590
    Originally Posted by CBS
    Hi Dolphin,

    I am talking about a proper letter to be published as a commentary. Let's talk. And anyone else who is interested.
    definitely interested

    THANK YOU GUYS!!!!!!!!!!!!
     
  17. jspotila

    jspotila Senior Member

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    Muffin, I have a lot of respect for your enthusiasm, your persistence, and your fighting spirit. I also respect your right to your opinion. But I do have to say that comments like this do NOTHING to encourage the engagement of the Association with this message board.

    Back on topic.

    I was curious about the info at the bottom of the abstract that "Part of these analyses have been presented at the 67th Annual Meeting of the American Psychosomatic Society." I found the abstract book for the meeting here: www.psychosomaticmedicine.org/misc/abstracttext2009v2.pdf

    Several interesting things stand out. First, the abstract presents data for CFS vs. well individuals. The 264 subjects with insufficient fatigue, including in the article, were not included here. This makes me wonder if that was one of the revisions required by the journal ("Received: August 9, 2009 Accepted after revision: January 5, 2010"). If so, this begs the question of why the authors selected the ISF group instead of the MS group from the 2003 study. Second, I added emphasis for the obvious question we've already asked: are the results of the study indicative of risk factors or the outcome of chronic illness.


    There were two other abstracts on CFS presented at the meeting, and I've copied them below in case anyone is interested in those:

     
  18. SOC

    SOC Moderator and Senior Member

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    Has anybody read Tina's post at (post #91)http://www.forums.aboutmecfs.org/sh...their-desperate-cover-up!&p=106252#post106252

    [my bolding]

    We're getting all het up about this latest Personality Disorders paper (and rightfully so, in most respects), but the CDC is apparently planning to claim that they were never talking about us in this paper. Us meaning those with neuro-immune symptoms and signs of infection, those who were not included in their community based surveys......
     
  19. Tammie

    Tammie Senior Member

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    Actually if I am interpreting what you mean correctly, it is not so random as one might be led to believe......they chose an area of Georgia that was of low socioeconomic status and paid them to particapite if they reported feeling "unwell" for a month or more (so some incentive for one thing that could skew the results)....... & not to stereotype, but people living in the area where this was done are most likely stressed, possibly working more than one low paying job (so tired!), and probably not eating well or exercising a lot, not typically very healthy or mentally healthy, and not able to afford good health care or mental health care (like I said I don't like stereotypes, but these are some things that otehr studies have shown tend to be true of poorer socioeconimc status).....if this were actually random, they would not have limited it to this area of the population
     
  20. muffin

    muffin Senior Member

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    Dolphin; It is a fair amount of work to refute but

    We do have the points already in this thread, many of which YOU made.
    I guess if I printed out this entire thread and copied/pasted the comments something might come together.

    Please: We do need to respond to this study. Please everyone, step up to the plate and gin up a letter - not long - but STRONG and get it off to these people.

    Also, bang on Freiden and Sebelius.

    As for GAO, the Investigator Generals (IGs), I have emailed and filled out forms but nothing has come of it. Maybe if others added their requests to the pile something might be done.

    We can not let the CDC get away with this. Now we have entered into a very deadly situation. Even when the positive XMRV studies come out, the CDC/CFS/Reeves/Weasel types will still find a way to damage us and put us into little boxes.
     

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