From InterAction 107, published spring 2021
Pregnancy can be a minefield, particularly if you have ME/CFS. Dr Katrina Pears tells us how she navigated her journey whilst living with the debilitating effects of the illness.
Deciding to start a family is a big decision, especially if you have ME/CFS. There is a lot to consider; the impact of pregnancy on symptoms, can ME/CFS be passed on to the baby, and how you will care for the baby. Making an informed decision is difficult due to the lack of research and the huge variation in pregnancy experiences.
As a write this article, I am 37 weeks pregnant, so hopefully when InterAction lands on your doorstep I will be holding my baby girl in my arms. Along my pregnancy journey, I have found talking to others about their pregnancy and birth experiences invaluable, and it’s helped me make many informed decisions.
Having a family was a discussion that my husband and I had as part of our wedding preparations, eight years ago. We both really wanted to have children in the future, however, at the same time I contracted flu which I never recovered from. Life circumstances meant that we were not in the position to start a family until now, always hoping that my ME/CFS would improve along the way. We both know that we have to be realistic about how we are going to cope and that we would need extra support. We are lucky to have my parents close at hand, and my husband will have six months off work to take on more of the childcare.
Fertility and M.E./CFS
The biggest and most important factor affecting fertility is age, with women’s fertility peaking in the late teens to the late 20s, after the age of 30 fertility starts to decline, and more rapidly from the mid-30s onwards. With ME/CFS affecting more women than men, and often starting in the childbearing years, age certainly has an effect on fertility within ME/CFS.
Other factors which affect fertility are: previously being able to conceive/previous pregnancy, duration of period when trying to conceive (the longer the less likely to be successful), and the timing and frequency of sexual intercourse. Alongside this, lifestyle factors such as; weight, smoking, caffeine, alcohol, over the counter and recreational drugs and medical conditions all play a part in fertility. Day-to-day stresses have also been shown to lower the chance of pregnancy.
There is very little scientific evidence directly linking fertility and ME/CFS. However, many with this condition have other underlying health problems directly related to fertility, such as irregular periods, endometriosis or a lack of libido which reduces the chance of pregnancy. It is thought that infertility may be higher in people with ME/CFS than healthy couples.
There is also found to be a higher rate of miscarriage in people with ME/CFS compared to healthy controls, but no difference in rates of complications during pregnancy.
My pregnancy journey
Personal experience of ME/CFS can vary dramatically, as does every person’s experience of pregnancy. Whether or not someone has ME/CFS, pregnancy can be tough for some, with debilitating nausea throughout. Others may not have significant symptoms, it’s possible you may even feel better than usual.
Pregnancy is known to be particularly tough in the first trimester especially for those with ME/CFS as fatigue can be particularly exacerbated. Additionally, there are new pregnancy hormones, nausea and vomiting, tender breasts and a constant need to urinate! It’s extra important to listen to your body in the first few weeks and get as much rest as possible.
Speaking from my personal experience I can definitely say that every pregnancy is different. I had a very traumatic pregnancy loss at the start of 2020 (unrelated to ME/CFS), right from the start of that pregnancy my mood became really low and despite it taking six months to get pregnant I did not feel particularly happy about it. From about 10 weeks onward I started to experience a lot of pelvic pain and was constantly uncomfortable.
Luckily, this current pregnancy has been very different from the start, and I became pregnant almost instantly! Unfortunately the sickness and nausea were worse this time round, but mild compared to what others experience.
In some ways I was very fortunate to be on furlough at the time I got pregnant, as I found the first 20 plus weeks incredibly exhausting. I had time to sleep every afternoon with no pressure to do anything else. From about 24 weeks onward, my fatigue was much improved and for the first time in eight years I was able to do a 10 minute walk every day without suffering any post-exertional malaise, although I still have to nap every afternoon. I was well enough at 25 weeks to secure a temporary part-time contract, which will take me up to two weeks before the baby is due. This has given me the mental boost I really needed, and honestly, I have not felt this well in years. I can also say that it’s a really magical experience, especially when you start to feel the baby moving.
ME/CFS in pregnancy
It’s really important to consider the impact on your ME/CFS symptoms when thinking about starting a family. There is a huge divide in experiences in pregnancy with ME/ CFS and published figures vary wildly. In one study, it was proposed that about one-third of people with ME/CFS improve in pregnancy, one-third remain unchanged and one-third have worsening symptoms.
Another study found a 30% improvement in symptoms, 41% with no changes and a 29% worsening of symptoms. As part of writing this article, I was keen to gain an insight into other people’s experiences. In a recent poll I posted on a support group with 95 responses, I found 58% to have had a positive pregnancy experience, 13% experienced no change in symptoms and 29% had negative experiences and worsening of symptoms.
One of my friends from school, Yasmin, has battled with ME/CFS since 2010 after contracting glandular fever. Before pregnancy, her ME/CFS symptoms were mostly in remission and she was living almost a completely unrestricted life. Pregnancy was really tough for her and took a toll on her body, with really bad morning sickness and not being able to stick to a healthy diet which has always helped to keep her symptoms at bay. She was completely exhausted all day, and had to reduce work to one and a half days a week. Yasmin’s little boy is now 15 months old, and sadly she remains bedbound most days. Yasmin has told me to be very realistic when pregnant, rest as much as possible, pace and above anything else, listen to your body.
Medical help during pregnancy
There isn’t any known medical reason why having ME/CFS shouldn’t mean you can’t have a healthy pregnancy. But the health service should put you under consultant care (instead of midwife-led only). This means that you will get to discuss your health issues and needs with a consultant. It is important to make sure that the consultant understands what ME/CFS means to you and what your limitations are, giving you an opportunity to discuss the right birth options for you.
Consultants can also make referrals to other antenatal teams if needed, such as physiotherapy, wellbeing clinics, and make sure you have all the medical help you require. If you remain under consultant care, it means that you will not be able to give birth in a midwife-led only unit or birth centre as it is safest to give birth in a hospital where more expertise is available. It is important to consider how you are going to manage pain which is incredibly draining on energy, and epidurals are not available in midwife-led units.
Having a lock-down baby
Having a baby in a global pandemic is going to come with challenges, when there are rules and restrictions in place, causing isolation and potentially reduced support. However the positives have included more appointments over the phone which minimised travel, waiting times and crowded waiting rooms (however, it is critical to attend appointments in person when directed).
Now, as the days grow brighter and daffodils blossom, the vaccine roll-out has given us hope for a much better 2021. I can’t wait for my new exciting adventure to start, to finally be a Mummy and celebrate new life in our family.
Resources and helpful links
ME/CFS Parents UK, who also have a Facebook group
Pregnancy and Parenting with M.E. Facebook group
BUMPS (Best Use of Medicine in Pregnancy)
Maternity Action offer a maternity rights advice line:
