Bring pregnant with ME

Tella

Senior Member
Messages
397
Likes
242
Hi, has anyone had severe ME and was able to go thru pregnancy, labour, looking after the baby with the help of family? It sadly seems to me that if u have many responsibilities already (like other children) and u are severely affected, I don’t know how u can have another baby...

Has it been possible for u? Any tips? When even going to bathroom seems like a marathon, how can u go thru pregnancy/labour etc?

Thank u!
 
Messages
575
Likes
1,809
Location
Missouri
Playing in Google found this,
https://emerge.org.au/diagnosis/managing-symptoms-daily-basis/pregnancy-motherhood-mecfs/


The State of Research
Unfortunately, there has been minimal research on the subject of the effects and risks of pregnancy, childbirth and the postpartum period on women with ME/CFS. The questions of, whether or not the course of ME/CFS changes during or as a result of pregnancy, or whether or not the experience of pregnancy and childbirth is different for women with ME/CFS, have yet to be definitively answered[1].

The most detailed study to date by Schacterle and Komaroff in 2004, of 86 women regarding 252 pregnancies that occurred before or after the onset of ME/CFS, found, interestingly, a number of women with ME/CFS reported a complete cessation of their symptoms during pregnancy (approximately a third improve, a third get worse and about 40% feel no change). The results after pregnancy are similar, if a little lower percentages (about 20%) for those that improve and those that get worse. Some physicians have suggested that the sudden increase in pregnancy-related hormones are most likely responsible for recovery in these cases. However they were unable to identify the factors which influence whether a particular woman will recover or worsen during pregnancy.

The same study, found that the rate of miscarriages (termed spontaneous abortions in the scientific literature) was higher for pregnancies occurring after vs. before ME/CFS (30% vs. 8%), but no differences in rates of other complications. Developmental delays or learning disabilities were reported more often (21 % vs. 8%) in the offspring of women who became pregnant after vs. before ME/CFS. However they concluded: “Pregnancy did not consistently worsen the symptoms of ME/CFS. Most maternal and infant outcomes were not systematically worse in pregnancies occurring after the onset of ME/CFS. The higher rates of spontaneous abortions and of developmental delays in offspring that we observed could be explained by maternal age or parity differences, and should be investigated by larger, prospective studies with control populations.

To unpick that, the women having children after their diagnosis of ME/CFS were of course older than they were when they had their child before they had ME/CFS. This could explain the rates of miscarriage and developmental delays, hence the need for studies with larger sample sizes and control groups.
 
Messages
575
Likes
1,809
Location
Missouri
A find which is a bit ominous, https://www.stuff.co.nz/life-style/parenting/pregnancy/69274772/how-my-pregnancy-cured-me

Chronic fatigue syndrome
Sam Sadie had an amazing pregnancy. The blogger usually suffers from chronic fatigue syndrome/myalgic encephalopathy (CFS/ME), a condition that includes debilitating symptoms such as fatigue, muscle pain and loss of concentration, to name a few of the devastating effects.
But when she fell pregnant in 2010, she enjoyed feeling more energetic and better than she had in years. Expecting a baby was a wonderful change from her normal way of life.
Unfortunately it wasn't a long-term fix; when Sadie's son was 5 months old she began to catch the viruses he inevitable brought home from daycare, and before long she was almost entirely bed-ridden.
But those few precious months were a welcome change for her aching, exhausted body and mind.
 

Tella

Senior Member
Messages
397
Likes
242
Messages
8,036
Likes
19,829
It would be great to hear from/of/about someone who’s actually severely ill who went on to have a child.
The severely ill Gal in Jen's movie, UnRest...(British gal)...recently had a baby which was a huge accomplishment. I'm forgetting her name.

I understand there can be remissions during pregnancy as the hormones change and this may provide a window to improve.

Personally: having "chronic eppstein barr" for what seemed like most of my childhood and life...pregnancy was extremely difficult, I would get extremely ill. I had severe morning sickness that has nothing to do with mornings. This body expected to process toxins from the new Parasite, that just didn't go smoothly. I had two miscarriages. Also could not push babies out. Had to get Swedish vacuum.

I did produce ONE healthy living person. That made all the rest of it worthwhile.
 
Messages
7,643
Likes
21,041
Location
Massachusetts
I had this same question a year or two ago (actually, I still have it but I asked the question here a year or two ago), and got some helpful responses. Here's the thread: https://forums.phoenixrising.me/threads/research-on-me-cfs-and-pregnancy.57296/

@Hip found these resources, which at least gave some information:
And @mari_gold posted this video, which I'm still trying to get up the energy to watch:

And @i-lava-u posted a bunch of videos about parenting with ME/CFS.

I hope this is helpful! You can also do a search for more threads and posts about pregnancy by using the search feature in the top right-hand-corner of the webpage
 
Messages
8,036
Likes
19,829
I just want to see how it was possible for them and if they have any tips.
I was not severely ill, I had a mild version...but the word Mild is a poor term.

So I had my daughter, who was generally healthy and wonderful. However, I feel like I should make some more comments. Watching her with the NEW Grandaughter..I see huge differences in health and vigor there.

My daughter was healthy as a baby but got numerous ear infections which made no sense to me.

What makes more sense now, is that she had a compromised immune system initially, and couldn't fight things off well. I likely did NOT provide a strong immune system via the intestine, nor thru the breast milk.

She also had some mild asthma, and still has occassional issues with that. I was all organic, she was breast fed, no day care, no reason to keep coming down with this crap. And then needing antibotics causing us more distress. My daughter also only received 4 total vaccinations...So utltimately: she is a relatively healthy adult and has few issues to be worried about and I'm so grateful.

now this grandbaby: hasn't gotten so much as a snivel. My daughter had like five ear infections already by this time...The grandbaby has gotten several vaccines (I tried so hard to prevent, delay delay). (delay mainly). They don't seem to phase her.

There is definately a difference here...some difference I feel it.
 

Tella

Senior Member
Messages
397
Likes
242
I was not severely ill, I had a mild version...but the word Mild is a poor term.

So I had my daughter, who was generally healthy and wonderful. However, I feel like I should make some more comments. Watching her with the NEW Grandaughter..I see huge differences in health and vigor there.

My daughter was healthy as a baby but got numerous ear infections which made no sense to me.

What makes more sense now, is that she had a compromised immune system initially, and couldn't fight things off well. I likely did NOT provide a strong immune system via the intestine, nor thru the breast milk.

She also had some mild asthma, and still has occassional issues with that. I was all organic, she was breast fed, no day care, no reason to keep coming down with this crap. And then needing antibotics causing us more distress. My daughter also only received 4 total vaccinations...So utltimately: she is a relatively healthy adult and has few issues to be worried about and I'm so grateful.

now this grandbaby: hasn't gotten so much as a snivel. My daughter had like five ear infections already by this time...The grandbaby has gotten several vaccines (I tried so hard to prevent, delay delay). (delay mainly). They don't seem to phase her.

There is definately a difference here...some difference I feel it.
Thank you for sharing!
 

Tella

Senior Member
Messages
397
Likes
242
The severely ill Gal in Jen's movie, UnRest...(British gal)...recently had a baby which was a huge accomplishment. I'm forgetting her name.

I understand there can be remissions during pregnancy as the hormones change and this may provide a window to improve.

Personally: having "chronic eppstein barr" for what seemed like most of my childhood and life...pregnancy was extremely difficult, I would get extremely ill. I had severe morning sickness that has nothing to do with mornings. This body expected to process toxins from the new Parasite, that just didn't go smoothly. I had two miscarriages. Also could not push babies out. Had to get Swedish vacuum.

I did produce ONE healthy living person. That made all the rest of it worthwhile.
I’m sorry about your miscarriages.
 

Tella

Senior Member
Messages
397
Likes
242
I had this same question a year or two ago (actually, I still have it but I asked the question here a year or two ago), and got some helpful responses. Here's the thread: https://forums.phoenixrising.me/threads/research-on-me-cfs-and-pregnancy.57296/

@Hip found these resources, which at least gave some information:


And @mari_gold posted this video, which I'm still trying to get up the energy to watch:

And @i-lava-u posted a bunch of videos about parenting with ME/CFS.

I hope this is helpful! You can also do a search for more threads and posts about pregnancy by using the search feature in the top right-hand-corner of the webpage
Thank u so much! I was so sick and unable to walk in my pregnancies without ME so can’t fathom how I would do it now that I’m bedridden with ME.
 

Tella

Senior Member
Messages
397
Likes
242
I had this same question a year or two ago (actually, I still have it but I asked the question here a year or two ago), and got some helpful responses. Here's the thread: https://forums.phoenixrising.me/threads/research-on-me-cfs-and-pregnancy.57296/

@Hip found these resources, which at least gave some information:


And @mari_gold posted this video, which I'm still trying to get up the energy to watch:

And @i-lava-u posted a bunch of videos about parenting with ME/CFS.

I hope this is helpful! You can also do a search for more threads and posts about pregnancy by using the search feature in the top right-hand-corner of the webpage
Sorry, where do I find the videos about parenting with ME? A bit lost still on this forum. Thanks
 

Tella

Senior Member
Messages
397
Likes
242
I had this same question a year or two ago (actually, I still have it but I asked the question here a year or two ago), and got some helpful responses. Here's the thread: https://forums.phoenixrising.me/threads/research-on-me-cfs-and-pregnancy.57296/

@Hip found these resources, which at least gave some information:


And @mari_gold posted this video, which I'm still trying to get up the energy to watch:

And @i-lava-u posted a bunch of videos about parenting with ME/CFS.

I hope this is helpful! You can also do a search for more threads and posts about pregnancy by using the search feature in the top right-hand-corner of the webpage
Sorry, found them!