1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Join the National PR Campaign for ME: Power to the Patient (P2tP)
Have you had enough of all the neglect and abuse of ME/CFS patients? Gabby Klein says now is the time for a National PR Campaign for ME/CFS to impress a change. Join the Patient Revolution to restore power to ME patients ...
Discuss the article on the Forums.

Reeves questionnaires in clinical settings - CDC marketing them

Discussion in 'Action Alerts and Advocacy' started by shrewsbury, Jul 27, 2010.

  1. shrewsbury

    shrewsbury member

    Messages:
    1,540
    Likes:
    55
    Mary Schweitzer <marymsch@comcast.net> via Co-Cure Moderator to CO-CURE today

    The CDC website for CFS is now marketing the Reeves questionnaires to clinicians to diagnose CFS.

    The questionnaires were problematic when used as research, but researchers could still stick to the strict Fukuda definition or use another definition.

    If they become the chief means of diagnosing patients with CFS, it will have a tremendous and unhappy consequence for the public and medical perception of the disease.

    According to an article published by Leonard Jason, the CDC questionnaires create a data set that, when compared with one created using strict Fukuda, lop off the top 30% of the sickest patients - and that would mean leaving them with no diagnosis at all in the field.

    In their place, the Reeves questionnaires fold in mainly patients with mood disorders such as mild depression or anxiety.

    But since the Reeves questionnaires created an estimate of 4-7 million patients with CFS (as opposed to Jason's estimate, roughly one million today), the exchange is not at all equal.

    The Reeves questionnaires would result in 6-10 patients with chronic fatigue (mainly due to mood disorders) diagnosed with CFS for every patient who would have been diagnosed using the Fukuda definition.

    That means that 83.3-90% of patients seen by the public, by clinics, and by the media as having CFS would have "chronic fatigue" for reasons bearing no resemblance to the CFS diagnosis in the past.

    Those of us with nothing but a CFS diagnosis (as much as we hate the term), would be left with either no diagnosis at all, or a diagnosis once again perceived - THANKS TO THE CDC - as wholly psychogenic.

    The CDC mentions M.E. in passing as being distinct from CFS, but M.E. is not a recognized disease in the U.S. It is definitely not the default option for those who no longer meet the new CFS definition.

    More to the point, when a longstanding CFS patient arrives at a hospital or a clinic with nothing but a CFS diagnosis, the likelihood will increase that those attending them will assume they have a psychiatric problem.

    We had made some headway after years of such prejudice - now CDC is dragging us right back - not openly, but deceptively.

    The danger to public health presented by this development cannot be emphasized strongly enough.

    Something must be done.

    I think it is worth noting that after CDC appeared to acquiesce in the unanimous request of CFS organizations in the US that Dr. Reeves be taken off our case, he's more present than ever. Elizabeth Unger and James Jones also share responsibility for this, as well as the somatization division of Emory University's Department of Psychiatry.

    [No wonder so many patients identified by Reeves appear to have experienced some kind of abuse in childhood - they're not CFS-Fukuda patients at all.]

    Mary M. Schweitzer
     
  2. SOC

    SOC Senior Member

    Messages:
    5,364
    Likes:
    6,445
    USA
    WTF! %$#^&^%$*&^! And then some!
     
  3. Sean

    Sean Senior Member

    Messages:
    1,307
    Likes:
    2,338
    Yep, this is very shabby, and while James Jones in particular is still there things will not likely get any better at the CDC, even if Reeves has been moved on. (Ironically, that faction might now fight even harder & dirtier for their little bit of turf.)

    OTOH, they might be shooting themselves in the foot, again, and setting themselves up for even greater disgrace down the track.

    Real sad thing is that all they (and Wessely, et al) had to do was say we think there is a subset of patients with some similarities to ME-CFS who are being dragged into the Fukuda definition, but who are different, and call them something else. That would have been a reasonable theory. Instead they tried morph ME-CFS into psych-CFS just to fit their somatisation ideology. Everybody could have come out of this looking okay, but they just couldn't find the humility to limit their claims to something more realistic. So stupid.
     
  4. SOC

    SOC Senior Member

    Messages:
    5,364
    Likes:
    6,445
    USA
    Okay....[deep breaths] It is indeed very shabby, but I suspect you're right -- they could very well be shooting themselves in the foot.

    And if their stupid criteria eliminate neuro-immune symptoms and signs of infection (swollen lymph nodes, etc), they might miss most real ME patients anyway.

    I'm still afraid for those of us whose idiot doctors wouldn't see a neuro-immune symptom if it kicked them in the... face. Or whose docs who think a very high EBV,HHV-6, etc titre and symptoms of the illness still doesn't mean you're sick because "nobody reactives those unless they're immune impaired and you're not". And they never test their statement "and you're not". :rolleyes:
     
  5. muffin

    muffin Senior Member

    Messages:
    940
    Likes:
    5
    USA!
    The CDC is running scared. This was prob. Reeves last shot at us and a desperate attempt to cover his butt. HE knows what's coming and he knows how that's going to crush him and the CDC.
    Reeves thought he could retire from the CDC and the CDC/CFS program would be gone. No funding, dead, gone. The sociopath did not count on WPI, NCI and others finding that Retrovirus. He thought that the CDC and NIH killed it off way back in the late 1980's only to see that virus raise its ugly head up once again.

    We will nail the CDC for all of their disinformation. They have all their new CYA stuff on the website (21 July 2010) for all to see when the NIH and FDA studies come out. CBT and GET as therapies for a virus? Right.
    For now we will let the CDC use all that rope to hang themselves when it all finally comes out - and it will. Have faith but also keep screaming and spreading the damage that the CDC is doing to the American public in keeping a deadly and highly contagious virus from the public and out in the blood supply and blood products. I suggest not discussing CFIDS and sticking to the cover-up of XMRV, a deadly and highly contagious virus that the CDC has covered up. THAT should get the public mad and scared. Also, prostate cancer should also get the attention of the public big time.
     
  6. Sean

    Sean Senior Member

    Messages:
    1,307
    Likes:
    2,338
    They are going to have to explain why they have altered the criteria so radically since Holmes (1988), or even Fukuda (1994). If the original group of patients that were used for the Holmes definition turn out to be XMRV +ve, then the CDC have a very serious problem on their hands. You cannot just arbitrarily and endlessly redefine a medical disorder to suit your own ideology.

    Even if they end up with a group of patients who are what they say they are (XMRV -ve, psych patients), they still have to explain why the other patients (XMRV +ve, ME patients), the original patients, were left behind.

    They have painted themselves into a corner. At some point they will have to answer for this. I do not see how they can come out of it clean.

    Like I said, all they had to do was say we think there are two different groups of patients being selected by the Holmes or Fukuda criteria, and they would have got away with it. But they wanted to cram all the patients into their somatisation model. Arrogant morons.
     
  7. judderwocky

    judderwocky Senior Member

    Messages:
    327
    Likes:
    3
    Apparently I wouldn't qualify for a single one of his studies.... UGH.

    They're playing politics with this... they're betting they can get these out to a number of clinicians before the damage by the studies is done.... they can turn around and say... "well apparently their are some sick people, that have been misdiagnosed with CFS over the years" .... they're just going to tell us... after they have an answer that we were never really sick with CFS... they will "discover" a new disorder and give that to us.

    I wish we had some money to play around with advertising of our own like this....

    What sucks is they are spending money they should be doing on RESEARCH to basically ADVERTISE to physicians about their crappy definition of the disorder.

    I'm sorry, but I don't have a comprehensive list of curse words to use in a situation like this. You will have to use your own imagination.
     
  8. Robyn

    Robyn *****

    Messages:
    180
    Likes:
    0
    xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
     
  9. CBS

    CBS Senior Member

    Messages:
    1,378
    Likes:
    312
    Western US
    I strongly agree.

    A large majority of the CAA's constituency was just redefined by the CDC
    .

    One million neuro-immune patients dismissed (not that this is new) and millions of new depressed and tired 'CFS' patients to represent.

    The CAA needs to make a very clear statement about who they are representing, who they are enrolling in their studies, the ramifications of this change for patients and the million plus people that the CDC has been trying to sweep under the rug for over 25 years.

    The time is now (not three weeks from now)!
     
  10. George

    George waitin' fer rabbits

    Messages:
    846
    Likes:
    44
    South Texas
    I agree, who's PM Jspotila and who's e-ing the CAA. I'll write up a bit on the "non-diagnostic" diagnostic test and send that to both but someone else has to pitch the witch about the questionnaires. And dang it I'm slow so I need a few days to write my up. K????
     
  11. Robyn

    Robyn *****

    Messages:
    180
    Likes:
    0
    xcxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
     
  12. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

    Messages:
    1,008
    Likes:
    553
    Noosaville, Aust
    CAA might have to change their name.
     
  13. Mya Symons

    Mya Symons Mya Symons

    Messages:
    866
    Likes:
    182
    Wyoming
    I am nervous about all this. I know I have neurological systems (twitching and jerking, balance problems, fingers move by themselves, sometimes can't feel my arms, losing memory, dizziness, etc.), but, none of my doctors have ever seen these happen and my MRI came out normal. Most of my symptoms happen right after I get up or right before I go to bed. Further, the swollen lymph nodes and the fevers come and go. How will I convince any doctor not to lump me into the group of "psychological" CFS patients? I guess the only hope I will have of this not happening is getting a positive on the XMRV test.
     
  14. judderwocky

    judderwocky Senior Member

    Messages:
    327
    Likes:
    3

    i definitely feel you... im in the same boat :(
     
  15. CBS

    CBS Senior Member

    Messages:
    1,378
    Likes:
    312
    Western US
    This is why a statement from the CAA is so important. I was in the same boat until 2-3 years ago. Now my neuro immune issues are florid and I've been treated in the ER and admitted to the Heart/Lung unit for "life threatening" infections. "CFS" patients need appropriate care and support before they develop these types of symptoms. Being a CDC "CFS" patient for 13 years and waiting for symptoms to get so bad that my paperboy could diagnose the neurological and immune issues is unacceptable.
     
  16. Forbin

    Forbin Forbin

    Messages:
    278
    Likes:
    317
    This was somehow predictable.

    Next Step: If you are XMRV+, you are excluded from a diagnosis of CFS.
     
  17. George

    George waitin' fer rabbits

    Messages:
    846
    Likes:
    44
    South Texas
    Folks keep saying that but I don't see it. There are too many scientist who have gone through the trouble of finding out what CFS is and are conducting research regarding XMRV as it relates to CFS patients. Plus there are studies going back 20 years that use the CFS moniker, plus there are actually doctors who can and do diagnose CFS based on bio-markers. I don't see that "CFS moniker" is just going to up and disappear, no matter how much the CDC want's it to. (grins)

    Re-branding is a difficult and expensive process. The scientist, like Alter, Coffin, Goff, Lo, Chow, and dozens of others are looking at XMRV in CFS and trying to understand what the fiddle do, ya know. It's going to be a real pisser if some big wig in HHS jumps up and says oh, we have to change all the papers now and call it XAND and study people who have XAND but since we don't know who those people are we just have to test everybody????? I don't think so. Money, money, money! Nah, they'll look at XMRV in CFS populations it's cheaper in the long run.

    I think a lot of the problems on the CDC website are just the stuff left over that's been there for years. So now's as good a time as any to start nit-picking it. If everyone get's on their high horse about one part or another my guess is we can get it changed. I doubt very seriously if Elizibeth Unger who is only the "interim director" really gives a rat's whats on the website. Lot's of interim folks don't really want to be were they get stuck and maybe she's not really driving the bus. So maybe we make a big fuss and nothing gets done till a new director get's picked. (shrug) but I'm going to give it a shot anyway.

    The biggest problem with the CDC- CFS stuff is the fact that all the study's are CDC study's, they completely ignore any outside work. That in my opinion is absolutely incestuous and is the main thing that needs to be fixed. The CDC needs to work with the community of Medical experts not in spite of it.
     
  18. Forbin

    Forbin Forbin

    Messages:
    278
    Likes:
    317
    Geroge, I understand what you're saying about the term "CFS" being too widely used to be easily re-defined - but, from the CDC's point of view, their "CFS" has always been the true "CFS."

    In 1992, the CDC, as represented by Reeves et al., explicitly said [in a rebuttal to Dr. Komaroff's paper in the Annals of Internal Medicine], that 259 extensively studied patients from the Lake Tahoe outbreak of 1984/1985 did not have CFS.

    My guess is that the CDC's stance is going to be that it is not their fault that physicians and researchers have been misapplying the term "CFS" for the last 20 years. It comes down to who controls the definition. Clearly the CDC believes that they do.
     
  19. V99

    V99 *****

    Messages:
    1,471
    Likes:
    1
    UK
    Ok we need a campaign, how about, 'Release CFS from the CDC'. Demand they have nothing to do with the disease?
     
  20. Sean

    Sean Senior Member

    Messages:
    1,307
    Likes:
    2,338
    So what did the CDC base their 1988 CFS definition on, if it wasn't those patients? I don't see how he can claim the patient group that was used to formulate the original definition didn't actually have the disorder! That is a total non sequitur, and proves he is just making shit up, based on little more than personal ideology. Effectively what he is saying is that he already knew what CFS was, independent of that original defining patient group.
     

See more popular forum discussions.

Share This Page