ME Association Website Survey: Why are we asking about premenstrual syndrome (PMS) and ME/CFS? | 01 August 2018

August 1, 2018


Dr Charles Shepherd, Hon. Medical Adviser, ME Association.

The premenstrual syndrome (PMS) is a collection of physical and psychological symptoms that many women experience every month around the time of menstruation.

Some of these symptoms also occur in ME/CFS – especially fatigue, cognitive problems, headaches and emotional lability.

So, it’s not surprising to find that a significant proportion of women with ME/CFS also notice an exacerbation of some of their ME/CFS symptoms at this time.

In fact, NICE suggest that ME/CFS should be considered when making a diagnosis of PMS.

There hasn’t been any research into PMS and female hormone status in ME/CFS – apart from a small study that was commented on in the Lancet in 1996:

Two gynaecologists from London – John Studd and Nicholas Panay – reported on a small series of 28 premenopausal women with ME/CFS who had a premenstrual exacerbation of symptoms. They had a premenstrual exacerbation of fatigue, headaches and loss of concentration.

22/28 had a severe premenstrual syndrome. Eleven of the group reported post-natal depression and nine reported that they had been ‘very well’ during pregnancy.

Interestingly, a random female hormone profile of the 28 showed a low level of plasma oestradiol – the main natural female oestrogen with a normal level of follicle stimulating hormone (FSH). Five of these patients also had low bone density (i.e. osteoporosis) involving the spine and hip.

Studd and Panay concluded that a sub-group of women with ME/CFS have chronic oestrogen deficiency, which may well improve during pregnancy when oestrogen levels are high. They also reported that 80% of this group had improved when treated with an oestrogen patch and cyclical progestogen therapy.

However, they also noted that these results would need to be repeated in a proper clinical trial before any conclusions could be made. But no other clinical trials have taken place to try and confirm these observations about PMS and ME/CFS.

Reference: Studd J and Panay N. Chronic fatigue syndrome, Lancet 1996, 348, 1384.

New Information Leaflet

The results from this website survey, along with any ‘patient evidence' on treatments that work, or don’t work for PMS, will be used to help prepare a new ME Association information leaflet on ME/CFS and PMS.

It will summarise what we currently know about PMS, how it can overlap with ME/CFS, and the various drug and non-drug treatment options that are available.

Treatment options will include a special section on alternative and complementary approaches and supplements – because there is some interesting research evidence to show that non-drug treatment options like vitex agnus cactus, calcium and vitamin D supplementation and saffron can be helpful in reducing some of the symptoms of PMS.

Get in touch

So, please let us know if you have any helpful tips if you have (or have had) PMS and ME/CFS – either here on the website in the comments below, or on our Facebook page, or by contacting the ME Association direct via email (please title ‘PMS and ME/CFS’).

You can locate the website survey half-way down the homepage of our website

Image copyright: andreypopov/123RF Stock Photo.

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