Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
Discuss the article on the Forums.

Early menopause and other gynecologic risk indicators for chronic fatigue syndrome in women

Discussion in 'Latest ME/CFS Research' started by jimells, Aug 8, 2015.

  1. jimells

    jimells Senior Member

    Messages:
    1,996
    Likes:
    6,075
    northern Maine
    On Jennie Spotila's blog on CDC funding, Cort has been crowing about the CDC gynecological study from 2011. While looking it up to see how great it is, I found this apparently brandy-new study:

    Can anybody tell me what is so new and wonderful about this latest study? Does it show that the CDC is now taking our illness seriously, and that our complaints about their indifference are no longer justified?
     
    Scarecrow, Gondwanaland and Bob like this.
  2. Bob

    Bob

    Messages:
    9,846
    Likes:
    33,923
    England (south coast)
    rosie26, jimells and mango like this.
  3. Bob

    Bob

    Messages:
    9,846
    Likes:
    33,923
    England (south coast)
    I don't know what the implications of this research are, but it does at least suggest that the CDC has accepted that ME/CFS is not a behavioural disorder or similar. And that their research focus has shifted from e.g. childhood trauma to investigating the real affects that ME/CFS has on patients' lives.

    In my opinion, the CDC have already demonstrated that they are now doing serious research into ME/CFS*, so I'm with Cort on this particular issue. There is still an issue with their cohorts (i.e. this is the Georgia cohort again), but I think the direction that Dr Unger has taken the research program has been transformative. But I'm struggling to convince anyone about this and my opinions seem to be in a minority. They've got a lot of proving of themselves to do, and I understand why people have zero trust in them.

    * Did you see their other recently published (genetic) research? I think it also demonstrates that things have dramatically changed at the CDC. This looks like a serious attempt to investigate the underlying biology of ME/CFS, and it again demonstrates that they aren't looking at a behavioural disorder but are taking it seriously:
    http://forums.phoenixrising.me/inde...nd-inflammation-related-genes-with-cfs.38413/

    The cohort issue won't be a problem for the multi-site study.
     
  4. jimells

    jimells Senior Member

    Messages:
    1,996
    Likes:
    6,075
    northern Maine
    OK. I can buy that, maybe...

    It seems strange to me that they are still publishing research apparently based on Reeve's junky cohorts from ten years ago, while they are promoting their multi-site study.
     
    WillowJ and Bob like this.
  5. jimells

    jimells Senior Member

    Messages:
    1,996
    Likes:
    6,075
    northern Maine
    Thanks for adding this. It looks like I managed to screw up the link to PubMed.
     
    Bob likes this.
  6. Research 1st

    Research 1st Severe ME, POTS & MCAS.

    Messages:
    681
    Likes:
    2,188
    This study is perhaps the usual garbage coming out of the CDC for CFS, which sadly is then pinned on 'ME', via the old CFS/ME tag gag, the British healthcare system blueprinted CFS/ME (literally) without CFS/ME actually existing in coding literature!

    In case no one was aware, the CDC's Dr Unger is on record, stating that CFS and the mind are inextricably linked.

    Dr Beth Unger, CFSAC meeting, October 2010:

    This sounds fine, but then the psych lobby say a virus may have been there initially in CFS, but was cleaned up long ago...still lets read on....

    Dr Beth Unger, CFSAC meeting, October 2010:

    A circle is something that goes round and round a perpetual motion. Keep that in mind with this Gyne study feat Dr Unger because a
    quick look at the conclusions of it, shows the potential psych message in the conclusion:

    The message is saying that women who have gyne symptoms might keep their 'CFS' going, due to having Gyne problems. Well...this looks innocent, (if not illogical), until you understand they are allowing for the psychiatrist to infer that the patient is over focussing on physical symptoms which increases stress, which perpetuates CFS, which is by total coincidence the identical message that CDC promote to doctors is one of the perpetuating factors (abnormal illness beliefs) in CFS patients.

    It is, of course, ludicrous for the CDC to suggest that having Gyne pain is associated to the core pathogenesis of what keeps patients with CFS sick - what they called perpetuating factors. But, the CDC do.

    Look up what the CDC say are perpetuating factors in CFS, and you will see a direct copy and paste of the Mindset of those who say ME doesn't exist -the British psych lobby, mainly a belief in a physical cause, the patients call ME.

    An example of this in Psych theory CFS is a psychiatrist would explain:

    I have chronic headaches, this must be proof there is something wrong in my brain, or in this case, my female genital area pain is proof I must have a mystery inflammation or something wrong and so I will avoid life - what psychs call somatization and what wessely calls ME (ME = Somatization Par Excellence, according to Wessely ,who is Peter White's Colleague (PACE trial), who the CDC reference on their website for GE/CBT 'evidence base' in CFS from St Bart's Hospital, London.

    Alternatively, lets ignore the CDC and consider the actual core factors of disease perpetuation in ME and observe, they are not Gynaecological at all, we all knows this, they are:

    1) Metabolic (Mitochondrial Dysfunction, Increased brain lactate, Lung function impairment etc).
    2) Neurological (Poor Brain Function, Brain Wave Changes, Loss of IQ, Confusion, Seizures)
    3) Immune (Immune Dysfunction, Autoimmunity, Immune Supression - NK Cell defect to fighter viruses etc)
    4) Circulatory (Reduced Blood Flow to the brain and heart)
    5) Muscle Dysfunction - reduced stroke volume/cardiac output in upright position etc.
    6) Neurological (Autonomic Nervous System Dysfunction).
    7) Haematological (Low blood volume/Hypovolemia, increased blood viscosity, misshapen RBC).
    8) Allergy (potentially lethal) and drug sensitivity meaning it's hard for patients to tolerate medications to reduce symptoms.
    9) Cancer - fatal in many.
    10) Multiple forms of Infections that mirror those in Lyme and AIDS. (HHV-6, Chlamydia Pneumoniae, Mycoplasma, Enteroviruses, Coxsackie Viruses, Parvovirus, CMV, EBV, TIck Borne illnesses etc).
    11) Hormonal - Increased Prolactin, Adult Growth Hormone deficiency, secondary hypocortisolemia - blunted reaction to Synacthen provocation test, low testosterone in males. Early menopause in females (CDC covered this single finding of all my points).

    THESE FACTORS IN BOLD CLEARLY PERPETUATE ME. We all know this, but he CDC is in complete denial of ME. Nothing on the CDC literature will even reference ME. They are very clever never to mix the two.

    ME as CFS, is not a 'Woman's Problem' (as the Americans see it, placing CFS research in 'Women's Health' (utterly sexist). We know ME is a disease process affecting both sexes. Gyne pain, no matter how disturbing to women (and it can be), is nothing to do with maintaining a severe, potentially fatal, chronic neuroimmune disease, instead it may be a hallmark of one!

    For the CDC CFS researchers to suggest that Gyne dysfunction could ''perpetuate'' a chronic neurological disease, is utterly preposterous, but totally predictable,due to their past and current failure to do a single thing to control the disease process for over 25 years, by refusing to adopt a new diagnostic criteria (E.g. ME-ICC or CCC CFS) that selects patients with signs of ME and symptoms of ME, e.g. not Unexplained Chronic Fatigue diagnosed without any tests - Fukuda CFS, aka, CDC CFS.

    Time and time again we see this BS from the CDC since the early 1990's, but it's part of the game when you diagnose people with uselessly weak diagnostic criteria (Fukuda CFS) as then any researcher can then play god with presumptions of correlation as causation, perfectly innocently... of course, because we 'were only looking at chronic fatigue', not ME. Nice banker that one for the future when the cause of ME is proven. The CDC has never produced a single study on ME whilst claiming CFS is biological and recommending psych therapy. Think about why.

    To this day, the CDC still refuses to acknowledge ME. Nowhere do they ever refer to ME, the same as the British tactic. The British openly state the ME, is a name that patients prefer on their NHS website, in other words, ME doesn't exist. The CDC just says nothing over ME, sensibly when trapping Americans with ME, inside CFS anyway - even smarter.

    Someone with even a vague interest in medicine, would see that Gyne disorders are a sign of INFECTION, immune dysfunction, AUTOIMMUNITY and ALLIED INFLAMMATION. Yet instead of recognising this, the CDC conclude that experiencing Gyne pain, may 'perpetuate'' the disease process of CFS. Huh?!

    What silliness and a great way to insult women as well.

    As for checking if the CDC interviewed well screened ME patients, they didn't. Observe they are using the old questionnaires technique (favoured by British Psychiatrists) again to verify claims by the patient they medically have X,Y,Z.

    This isn't medicine and who exactly is a CFS 'patient' over a telephone? Legitimate data? No medical work up? No Clinical Appointments? Of course not, that would lead to some actual accuracy):

    I despair sometimes at such research as 'proof of physical in CFS' (which always ends in mental health get out clause), but then I remember independent researchers (away from state control) examining real ME patients with system disease signs observed and diagnosed by a doctor (not talking to people with self reported chronic fatigue over the phone as the CDC do) and are making some good pathogen discoveries, but are yet to publish, but will in time.

    With future quality pathogen based research it may make more sense why so many PWCFS have gynecological problems with the infection and autoimmunity being the perpetuating factor, not the mind-body connection.
     
    Last edited: Aug 8, 2015
  7. Bob

    Bob

    Messages:
    9,846
    Likes:
    33,923
    England (south coast)
    I hadn't spotted that line. It's not great. The CDC aren't ready to drop their pursuit of 'fatigue' yet. It will be interesting to see how they eventually respond to the IOM criteria.
     
    Kyla, Valentijn and mango like this.
  8. Dolphin

    Dolphin Senior Member

    Messages:
    10,557
    Likes:
    27,562
    This used the empiric criteria (Reeves et al., 2005) which found a prevalence of 2.54%. I think these criteria are rubbish (much worse than the Fukuda) and have little faith in any results involving them.
     
    Kyla, Scarecrow, Valentijn and 2 others like this.
  9. jimells

    jimells Senior Member

    Messages:
    1,996
    Likes:
    6,075
    northern Maine
    Thank you for your analysis. This is exactly what I hoped to solicit by starting the thread. So this study is worse than useless, because it ends up promoting psychobabble while maybe appearing not to.
     
  10. Snowdrop

    Snowdrop Rebel without a biscuit

    Messages:
    2,803
    Likes:
    9,208
    Toronto
    Sooo, how what does this imply for how the CDC views ME?
     
  11. jimells

    jimells Senior Member

    Messages:
    1,996
    Likes:
    6,075
    northern Maine
    It can't be any plainer that they intend to continue their non-research even while conducting the multi-site study which has yet to produce a single paper, as far as I know.
     
  12. daisybell

    daisybell Senior Member

    Messages:
    1,566
    Likes:
    7,055
    New Zealand
    jimells and Never Give Up like this.

See more popular forum discussions.

Share This Page