ME/ CFS and breastfeeding

[minkulus]

Hi I am 39 yrs old and have had ME/CFS for many years. I am in a very good place at the moment despite being 26 weeks pregnant!
I was wondering if other mum's with ME/CFS
decided not to breastfeed for fear of 'passing on' propensity for the disease.
I didnt BF my DD as I had NO milk come in at all, but am finding it hard to make a decision with this one if my milk does come in IYSWIM?!
Any advice gratefully received.
Thanks.xx

I don't know quite what you mean by causing a propensity towards M.E.; as far as I'm aware that's possible.

But anyway - am currently breastfeeding my 6month old, am 18 and have been ill for two and a half years. I made my decisions based firstly on the fact that "breast is best" and I wanted to give it a shot, and secondly, after having discussed it with other M.E. mothers, decided it would be much easier if I could manage it, rather than trying to fix a bottle during the night.

He is a hungry baby, but I am still sure I made the right decision - it is easier, as if I am tired, I can just lay him next to me and drift off if I have to. The only difficulty I had at first was supporting his weight to feed, but with time I have got used to that, and as he has got bigger I have started using pillows a lot so I can MN at the same time to save my arms.

HTH.

I was better during my pregnancy than at any other time

I BF for nearly 9.5 months, but I had massive support from DH (who woke with DD, changed her, winded her & got her back to sleep

Good Luck - DD had expressed milk for one feed - DH gave her 16.5oz over 1 hour - so I guess DD was hungry too

Thanks for your replies. I guess what i meant was were you worried you might somehow give the baby ME? probably sounds really daft, but I get so paranoid when my LO gets tired.....she's a normal, healthy, wonderful 5 year old, BUT I FF her. My dilemma is what if I BF this one and he/she 'gets' ME at a later date.
Can you tell the hormones are raging?!

Bless you - logically, you know that is ridiculous, right? M.E. is caused by a part of the brain not functioning correctly, and sending mixed messages through your body, causing the pain / weakness / tiredness / confusion. If s/he did (God forbid) develop M.E. at a later date, it would have nothing to do with you in any way. So put that silly worry from your mind I was very lucky in that I was still technically a child when I fell ill, so was seen by a fantastic paediatric and teen specialist until I turned 18. He reassured me throughout my pregnancy and was absolutely amazing, so perhaps that was why the concern never crossed my mind. He made me feel at ease with my illness.

Will you have your partner around to help you to begin with?

Thank you for the words of sense! I guess I have had this blardy illness for so long it feels like an intrinsic part of me.
I have never had particularly good care from health profession, and have stopped reading info/ asking for help.
My husband is incredibly supportive and I have a good network, so its not really about the amount of work involved, more the blame/guilt thing of being a mum who's not 100%.
Thank you again for the positivity, and I am so glad you are supported well and have had a good health team.
You have a very wise head on such young shoulders. Wish I was a sure of myself at my ripe old age . I worry far too much!

I am so glad you are deciding to BF.

Its a lovely way to get a great bond with your child as well as giving them the best nutrtition. Also the laziest option and no annoying bottles to sterilise. I BF for 6 months, but needed my pain meds back after that.

I also have a chronic illness and came up against health professionals who somehow thought my breast milk must be inferior to a healthy woman's. HOWEVER, this isn't right. Plus you know that your body was HEALTHY enough to bear a child in the first place!??

Yes, we worry about our children having the same illnesses as us. Thats only natural. As the other posters have pointed out, its not neccessarily logical, but fears seldom are. (((BIG HUGS)))

p.s. do check out Disabled Parents Network

www.disabledparentsnetwork.org.uk/cgi-bin/site/site.cgi

Yes, I have a vested interest, as I volunteer, but it has been a great help to me - and many other parents.

I feel that way after two years, so its totally reasonable I hope my post didn't sound patronising or rude Subtlety is unfortunately not my strongest quality, and I was trying to be wryly comforting - but your never know how someone is going to read something!!

I don't pretend to be an expert, but if you want to chat more am happy to give you my FB / email address

OH sirboob, my comment about your age etc was realy and truly meant as a compliment - sorry if I sounded peevish! I think you are very wise and have a great deal of common sense whereas I seem to be in a constant state of stupid dithering!
I have never really accepted the condition and tend to be all gung ho about not needing help or being 'disabled' in any way which means I tend to make my emotional/ psychological life 100 times more difficult than it needs to be!
I would love to chat to you and keep up with your progress.

Ohh you sound just like me But then at the same time I get annoyed when people don't realise / accept I'm disabled . Its like a no win battle with yourself of "I want to be "normal"... But you have to help me!". Before I got ill I was a bit of a high flyer (not trying to blow my own trumpet, just the truth), especially when it came to academia, and adjusting from that to being bed ridden for the first months was horrendous. shudders Every time I get so much as a cold now, I am terrified of going back to the way I was.

But anyway Sorry, mini-rant there! Point I was trying to get to is - this condition is a bit of a bitch, isn't it?!

If you search Erika-Maye on FB, my picture is of a rather chubby baby with a huge smile and a quiff!

SirBoobAlot, you say: "logically logically, you know that is ridiculous, right? M.E. is caused by a part of the brain not functioning correctly, and sending mixed messages through your body, causing the pain / weakness / tiredness / confusion."

However, there are theories that one or more viruses are involved and so some people feel there is a theoretical risk. Different viruses are suspected e.g. XMRV.

You are very definite about what you think causes M.E. but many people would say there are plenty of research studies that would say your model doesn't fit the illness.

I have M.E. and have had it for 9 years. DS is 2.4. I FF fed as I was very worried about breast feeding making me more tired than I already was and then not having enough energy to look after a baby.

I'm not convinced I actually had anything though. I had a go in the hospital at getting DS to latch on. He wouldn't. Midwife tried hand expressing, was there fore ages and only got 1 drop in the syringe. When my milk came in, I didn't leak at all.

Hi. Yes, there is some advice not to breastfeed.

Last year there was some research published in Science, "Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome." The main author is Dr Judy Mikovits. 67% of CFS patients had the retrovirus compared to 4% of controls. www.telegraph.co.uk/science/science-news/6276718/Most-cases-of-chronic-fatigue-syndrome-linked-to-vi rus.html

If I've understood things right, XMRV is the third human infectious retrovirus. The first two are HTLV and HIV.

Dr Mikovits answered a question about breastfeeding in this PDF www.iacfsme.org/Portals/0/pdf/IACFS-Attachment4-April2010.pdf and talks about how not breastfeeding reduced the spread of one of the other retroviruses, HTLV.

"Gammaretroviruses can be transmitted vertically and are transmitted in breast milk. The hormone responsiveness of the virus suggests that lactating moms express more XMRV in breast milk. HTLV 1 was endemic in Japan so simply preventing breast feeding reduced HTLV-1 associated neuroimmune disease and cancer by 40% on one generation."