Why Women are More Prone to Long Covid (and ME/CFS)

Celandine

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Good piece in the Guardian looking at various theories. Very applicable to ME, as well. One of the things it says is "Some scientists have already begun to describe long Covid as an oestrogen-associated autoimmune disease..." which is very interesting and not something I've seen mentioned before.

I've thought for a long time that cracking the reason why women are so much more prone to getting ME would go a long way to finding solutions. Not at all to minimise the many men who also suffer, of course.

https://www.theguardian.com/society/2021/jun/13/why-are-women-more-prone-to-long-covid
 

Pyrrhus

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I've thought for a long time that cracking the reason why women are so much more prone to getting ME would go a long way to finding solutions.
It would be interesting to gather info on changes in ME associated with around menopause. I wonder how many of us could maybe respond to a poll of some sort.

Unrefreshing sleep really started to take over when I hit around 50 years of age. And the menopause symptoms intensify at that time. So alot of my ME symptoms intensified at that stage.

But I think we don't have a huge cohort of older ones to generate much data from- it would be a good thing to look at in one of the larger bio-sampling studies.
 

Pyrrhus

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Unrefreshing sleep really started to take over when I hit around 50 years of age. And the menopause symptoms intensify at that time. So alot of my ME symptoms intensified at that stage.
I would hope that there would be some research that has looked at ME symptoms before and after menopause.

Does anyone know of any papers?
 

perrier

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Hormones are often very deregulated and very fluctuating in this illness, at least with women, as far as I know. And supplementing has not really brought results that often--for the women I know.
 

Celandine

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It took a long time to find a combination birth control pill that actually suppressed my daughter's periods (most still left her with a lot of breakthrough bleeding) but now that she's found one that works, it's made a big difference with symptoms. She's been on it constantly for a while now and it definitely seems to be a piece of the puzzle that's helped her to function. I guess the pill adds oestrogen, so not sure how that fits in with the theory. Smoothing out the fluctuation of hormones seems to be the more important thing, perhaps.
 

Hufsamor

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RESEARCH INTO GYNAECOLOGICAL AND FEMALE HORMONES
Professor Tony Komaroff and colleagues1 in America examined whether menstrual and gynaecological abnormalities precede the onset of ME/CFS.
They looked at 150 women with ME/CFS and 149 controls and used ques- tionnaires on menstrual, reproductive and medical history. The ME/CFS group reported increased gynaecological complications and fewer premenstrual symptoms. Compared to controls, a greater number reported irregular menstrual cycles, times without periods, and sporadic bleeding between periods.
Factors suggestive of abnormal ovarian function – eg a history of polycystic ovary syndrome (PCOS), excessive hair growth and ovarian cysts were also more common.
They concluded that frequent menstrual cycles without ovulation due to polycystic ovary syndrome, or raised levels of the hormone prolactin, may increase the risk of ME/CFS.
This is through the loss of the potential immunomodulatory effects of the female hormone progesterone in the presence of continued oestrogen production. They also hypothesised that frequent menstrual cycles without ovulation due to PCOS may help to explain the increased reporting of gynaeco- logical complications and lowered premenstrual symptomatology in ME/CFS.
Boneva‘s team in America2 looked at 36 women with ME/CFS and 48 controls using a structured gynaecological history questionnaire. The ME/CFS group reported higher rates of pregnancy, gynaecological surgery, pelvic pain unrelated to menstruation, endometriosis, and times without periods. Menopause occurred about 4.4 years earlier in the ME/CFS group. More women in the ME/CFS group reported having a hysterectomy and ovary removal than controls. These findings stress the need to take a proper gynaecological history from women with ME/ CFS.
Here in the UK, gynaecologists John Studd and Nicholas Pany reported in the Lancet3 that an oestragen patch and cyclical progestogen therapy may help women who have a premenstrual exacerbation of symptoms with low levels of serum oestradiol.
1 Harlow BL et al. (1998) Reproductive correlates of chronic fatigue syndrome. American Journal of Medicine, 105, 94S-99S.
2 Boneva et al. (2011) Gynaecological history in chronic fatigue syndrome. A population-based case study. Journal of Women’s Health, 21 - 28.
3 Studd J and Panay N. (1996) Chronic fatigue syndrome. Lancet, 3478, 1384
 
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Study Finds Link between Early Menopause and CFS
I want to comment- natural Progesterone creme really helped me with the perimenopausal issues. I used it,half a recommended dose, for about 10 years. It reduced hot flashes, my main symptom post meno.

My periods were getting heavier abruptly in my late 40s. This happened to my mom and they gave her the hysterectomy. I think progesterone creme (natural, bioidentical made in a lab) can help correct this issue and one can avoid the operation.

Dr. Lee has a book about how to use the creme. Confer with your doctor first.
 
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I don't think I fit this profile. I used to have very heavy periods but going on the pill did the trick and I had none of the other symptoms. I am not sure if menopause has made things worse or just getting on in years! I am on HRT and found I felt better during one short time on increased estrogen, but my gyno isn't happy with the higher risks associated with it. Not sure what to do.
 
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my gyno isn't happy with the higher risks associated with it. Not sure what to do.
...its just a real tangible risk.....I know several females all of whom did HRT or more localized applications and ended up with the more serious breast cancer. the one who used an estrogen ring....etc., too.
 

Abrin

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I thought part of the reason that women were more prone to long covid was because men were more prone to dying of COVID-19 and therefore it would skew the long covid data or did those early theories already change? I know with data on this is changing constantly so I assume I must of missed something.
 

Pyrrhus

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I would hope that there would be some research that has looked at ME symptoms before and after menopause.

Does anyone know of any papers?
RESEARCH INTO GYNAECOLOGICAL AND FEMALE HORMONES
Professor Tony Komaroff and colleagues1 in America examined whether menstrual and gynaecological abnormalities precede the onset of ME/CFS.
They looked at 150 women with ME/CFS and 149 controls and used ques- tionnaires on menstrual, reproductive and medical history. The ME/CFS group reported increased gynaecological complications and fewer premenstrual symptoms. Compared to controls, a greater number reported irregular menstrual cycles, times without periods, and sporadic bleeding between periods.


I just heard of this book:

The Menopause and M.E. (C.F.S) Paperback – February 4, 2013
https://www.amazon.com/Menopause-M-C-F-S/dp/1481031805
For many women suffering from ME/CFS the menopause is approached with a sense of worry and confusion. The list of symptoms for ME and the menopause are very similar leaving women wondering how they are going to cope, how it will affect their illness, their relationships and their lives. This book looks at the experiences of sufferers and how they coped, what they felt worked and what didn't. The women, who completed a survey, show how diverse the menopause can be, just like the illness. Written by a fellow sufferer this book is aimed at women facing this natural stage of their lives (while already dealing with a challenging illness) and hope to help them to be better prepared by reading what others have experienced.


And here is a 2019 epidemiological paper that discusses "hormonal events" and ME:

Onset Patterns and Course of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (Chu et al., 2019)
https://forums.phoenixrising.me/thr...hronic-fatigue-syndrome-chu-et-al-2019.84716/
Although women have discussed amongst themselves premenstrual aggravation of their ME/CFS symptoms for many years, only one other study besides ours has formally surveyed patients. Sixty-seven percent of Clark et al.'s (41) subjects reported worsening of ME/CFS before their periods, close to our figure of 53% (Figure 1).
[...]
Despite the highest prevalence of ME/CFS being recorded in the 40–50 age range (124, 129), no other study has asked about the impact of menopause on symptoms. Menopausal symptoms such as increased fatigue, hot flashes, insomnia, and forgetfulness overlap with those of ME/CFS. This fact combined with the 38% of our peri- and post-menopausal subjects (Figure 1) who felt that menopause exacerbated their ME/CFS should prompt further research.

Are amplified symptoms during this life phase due primarily to the expected changes of menopause, hormonal adjustments on ME/CFS, or a combination of the two? Should ME/CFS be a consideration when women decide whether and for how long to partake of hormone replacement therapy? In contrast, over three-quarters of women expressed no changes in symptoms while taking exogenous female hormones, whether for birth control, menopause, or other medical conditions. Only eleven percent of our subjects and 7–9% of Friedberg's (18) subjects noted worsening or onset, respectively, with hormonal medications.
 
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