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

jimells

Senior Member
Messages
2,009
Location
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:

Abstract
OBJECTIVE:
This study aims to examine whether gynecologic conditions are associated with chronic fatigue syndrome (CFS).

METHODS:
This study includes a subset of 157 women from a population-based case-control study in Georgia, United States, conducted in 2004-2009. Gynecologic history was collected using a self-administered questionnaire. Crude odds ratios (ORs) with 95% CIs and ORs adjusted for body mass index and other covariates, where relevant, were estimated for gynecologic conditions between 84 CFS cases and 73 healthy controls.

RESULTS:
Cases and controls were of similar age. Women with CFS reported significantly more gynecologic conditions and surgical operations than controls: menopause status (61.9% vs 37.0%; OR, 2.37; 95% CI, 1.21-4.66), earlier mean age at menopause onset (37.6 vs 48.6 y; adjusted OR, 1.22; 95% CI, 1.09-1.36), excessive menstrual bleeding (73.8% vs 42.5%; adjusted OR, 3.33; 95% CI, 1.66-6.70), bleeding between periods (48.8% vs 23.3%; adjusted OR, 3.31; 95% CI, 1.60-6.86), endometriosis (29.8% vs 12.3%; adjusted OR, 3.67; 95% CI, 1.53-8.84), use of noncontraceptive hormonal preparations (57.1% vs 26.0%; adjusted OR, 2.95; 95% CI, 1.36-6.38), nonmenstrual pelvic pain (26.2% vs 2.7%; adjusted OR, 11.98; 95% CI, 2.57-55.81), and gynecologic surgical operation (65.5% vs 31.5%; adjusted OR, 3.33; 95% CI, 1.66-6.67), especially hysterectomy (54.8% vs 19.2%; adjusted OR, 3.23; 95% CI, 1.46-7.17). Hysterectomy and oophorectomy occurred at a significantly younger mean age in the CFS group than in controls and occurred before CFS onset in 71% of women with records of date of surgical operation and date of CFS onset.

CONCLUSIONS:
Menstrual abnormalities, endometriosis, pelvic pain, hysterectomy, and early/surgical menopause are all associated with CFS. Clinicians should be aware of the association between common gynecologic problems and CFS in women. Further work is warranted to determine whether these conditions contribute to the development and/or perpetuation of CFS in some women.

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?
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Can anybody tell me what is so new and wonderful about this latest study?
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.

Does it show that the CDC is now taking our illness seriously, and that our complaints about their indifference are no longer justified?
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.
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
... but it does at least suggest that the CDC has accepted that ME/CFS is not a behavioural disorder or similar.

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.
 

Research 1st

Severe ME, POTS & MCAS.
Messages
768
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:

'Just let me say there has never been any doubt at the CFS programme at CDC that there is a biologic basis for this illness.
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:
It is not codespeak if we talk about a psychosomatic illness, it is a reflection of the mind body connection. I think that this is one of the things our society does not do good job at understanding there is a mind body connection. And when you start understanding how people respond to their illness and how their illness affects them, it is a circle'.

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:

'''Further work is warranted to determine whether these conditions contribute to the development and/or perpetuation of CFS in some women''.

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):

''Gynecologic history was collected using a self-administered questionnaire''.

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:

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Boneva et al. said:
Further work is warranted to determine whether these conditions contribute to the development and/or perpetuation of CFS in some women.
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.
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
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,

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.
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
Sooo, how what does this imply for how the CDC views ME?

Further work is warranted to determine whether these conditions contribute to the development and/or perpetuation of CFS in some women.

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.
 

pattismith

Senior Member
Messages
3,931
the correlation between menopause and altered autonomic nervous system may be another link between menopause and CFS/ME:

"Effect of tibolone administration on heart rate variability and free fatty acid levels in postmenopausal women"

"Result(s): Anthropometric data were unchanged throughout the study. Compared with placebo, long-term tibolone administration was associated with a decrease in plasma levels of low-density lipoprotein cholesterol, triglyceride, and free fatty acid and homeostasis model assessment index. Furthermore, tibolone administration was associated with an increase in RR interval, total power, and high frequency and decrease in low frequency and the low frequency/high frequency ratio. Finally, the δ decrease in plasma free fatty acid levels correlated with δ low frequency/high frequency ratio independently of age, δ body mass index, δ homeostasis model assessment index, and low-density lipoprotein cholesterol levels.

Conclusion(s): Long-term tibolone administration improves the ratio of cardiac sympathetic tone to parasympathetic tone in postmenopausal women."

Estrogen replacement therapy decreases risk for cardiovascular mortality because it decreases low-density lipoprotein (LDL) cholesterol levels, increases high-density lipoprotein (HDL) cholesterol levels, inhibits vasoconstrictor response to norepinephrine, and increases parasympathetic tone.

Because of the strong metabolic link between plasma triglyceride and free fatty acid levels and cardiac sympathetic nervous activity . Elevated plasma free fatty acid concentrations stimulate the cardiac autonomic nervous system in healthy subjects. , tibolone may influence cardiac sympathetic nervous activity through a change in plasma free fatty acid concentration. We therefore assessed the efficacy of long-term tibolone administration (2.5 mg/d for 4 months) on plasma free fatty acid concentrations and on cardiac autonomic nervous activity, as assessed by heart rate variability, in 30 postmenopausal women.
 

pattismith

Senior Member
Messages
3,931
@Mary
here is my last update on Tibolone!

I am currently menopausal, and started to suffer hot flashes and nocturnal sweating a few months ago.
It's a long time since my progesterone decreased, but I still had some estrogen until recently. When it went low, the hot flashes appeared...
So after one year without any mense I started Tibolone three weeks ago, a drug that has some progesterone + estrogen + androgen activity, depending of tissu metabolism. His effect on muscle and brain sounded interesting to me.
This drug quickly made the difference for me, pain has mostly resolved, brain fog and headache are gone, mood is much better, energy is back. It's hard to believe that such a miracle is going to last, but I wish it will!

I think I am lacking progesterone for decades, but had no hot flashes before my estrogen completely dropped.
The strange thing is that I never improved with DHEA nor with progesterone cream. I was also given some oral progestagen and couldn't tolerate it!
Tibolone is the first drug that ever helps me since I struggle with my female hormons as a teen. Note that it's only three weeks since I started, so I am still suspicious whether it will keep working.
Last 7 days, I was able to travel 48 hours and visit a foreign town, push my husband wheelchair and help him walking, and back to work on Monday I was able to cope with a new software at work, working up to ten hours a day….And got no payback, no PEM from all that. I'm still waiting for a bad backlash and can't see it happening.
I though I would need cortisone to cope with this difficult week, but I took none.:woot:

Hello Mary,
unfortunately after one good month it stopped working and I stopped Tibolone. I started bleeding and the pain came back at the same moment, very similar to my ancient dysmenorrhea.
But any good day, or good week I can have are gifts that help me going through the bad days. There was a time (years ago), where I knew only bad days, and I remember how hard it was.
I now know autoimmunity, autonomic nervous system defect and small fiber neuropathy are involved in my disease, so I guess the good days can be either the result of my experiments or the natural variation of the disease; It's hard to say sometimes!

I'm still struggling to find a good hormonal therapy for menaupose.

After stopping Tibolone, I used estrogen gel, which was efficient for hot flashes, but when I added progesterone (intravaginal), I had a bad reaction (as usual!), with fatigue and brain fog....

So I am back to Tibolone (but kept Estrogel), and within a few days felt great again! What the hell this drug is doing, it's just amazing ...:)