Do your children have ME/CFS?

[_Kim_]

coxy, one of our new members, posted:

hi, i'm new. i'm a M.E mum of 4 children, 2 of them also have M.E i'm afraid.

i am really keen to see how many other people on here have more than one family member with this illness, maybe we could run a poll. I feel i'm rather unusual that i got ill AFTER my children, it seems more common the other way around, i could be wrong though, that's why a poll would be useful.

When i first heard of XMRV it was the first time anything had made sense in our situation, although i couldn't understand and still can't, as to why i didn't get me/cfs triggered by glandular fever at 15yrs if XMRV was lying dormant in all our family?????

Would love to hear back from anyone with their thoughts, and especially multiple family members with me/cfs

 

[gracenote]

one sibling

Would love to hear back from anyone with their thoughts, and especially multiple family members with me/cfs

Hi coxy,

I'm so sorry that you are ill and that two of your children are, also. It was VERY hard for me to raise my children while sick with ME/CFS, and I cannot imagine also having children who are sick. My heart goes out to you.

I have three healthy children and three healthy grandsons. I have six healthy siblings, but an older sister who I'm sure now has CFS and FM (she's still trying to find the right doctor for a proper diagnosis). My sister lived with me right before I got sick and we had a lot of contact for a couple of years after. Makes me wonder. I have no other relations who are sick or acquaintances, either (except for the people who I've met already sick).

Just realized that I have a niece, daughter of above sister (one of among oodles of nieces and nephews) who got Mono last year and is still struggling with it. Hopefully it will not turn into something more, but it is a bit worrying.

 

[BEG]

hi, i'm new. i'm a M.E mum of 4 children, 2 of them also have M.E i'm afraid. [/URL][/SIZE][/B][/QUOTE]

Coxy, I'm very sorry about your 2 children who are ill with this dreadful disease. I'm sure it is heartbreaking for you and very difficult to raise 4 children while sick yourself. My only child became ill with CFS before her 30th birthday with sudden-onset ME/CFS. It was very difficult to witness her collapse. She had to be driven home and put to bed immediately. She spent three weeks in bed. When she was able, someone would drive her to the doctor to get answers. Her Epstein-Barre titers were very high which was the only unsual item from the blood tests. Several doctor's suggested CFS. She remains ill today (4 years later). My granddaughter is a healthy, active 8 year old, whom I pray will remain that way. Unfortunately, I don't believe I will see real mainstream, insurance paid treatment for this disease in my lifetime. I would sacrifice that in a heartbeat to bring some healthy years to my daughter and to ensure that my granddaughter never suffers from ME/CFS a day in her life. Good luck to you on your difficult road. Knowing your story, I'm really glad I chose to have only one child. I couldn't bear it if I had passed this on to more offspring. You must be a very strong person.

 

[Countrygirl]

What about household members who are not genetically related?

Kim,

I know it is not applicable to the above poll, but I think it would be useful to know how many non-related members of a household have M.E., or who developed the illness after leaving a house where someone had the illness. I could place a tick in that box. What do you think?

A friend who lived in the same house as me for some years during which time I was severely ill has recently developed M.E late in life. I know of someone else with illness whose live-in help also developed it, and later died of complications caused by the condition.

 

[Melanie]

Thank you for the poll. Its very interesting for me.

Im from germany and my mum and I, we are both have CFS. My mum got it also after me.
In 2004 I got CFS after an infusion, at this time I was 24 years old. 1 year later, my mum got CFS and FMS, but we dont know why. She had no virus or something other illness.

Best wishes,
Melanie

 

[_Kim_]

Hi Melanie

Thank you for the poll. Its very interesting for me.

Im from germany and my mum and I, we are both have CFS. My mum got it also after me.
In 2004 I got CFS after an infusion, at this time I was 24 years old. 1 year later, my mum got CFS and FMS, but we dont know why. She had no virus or something other illness.

Best wishes,
Melanie

Welcome to the forums. Thanks for sharing your story with us. That's exactly what coxy was wondering - if there were other families where the parent got sick AFTER the children. Maybe it's not so rare afterall.

 

[_Kim_]

Kim,

I know it is not applicable to the above poll, but I think it would be useful to know how many non-related members of a household have M.E., or who developed the illness after leaving a house where someone had the illness. I could place a tick in that box. What do you think?

A friend who lived in the same house as me for some years during which time I was severely ill has recently developed M.E late in life. I know of someone else with illness whose live-in help also developed it, and later died of complications caused by the condition.

Hi Countrygirl,

I deleted the duplicate post.

I think your point is interesting and would make a great poll question. I tried to find a logical way to add it to this one, but considering it was coxy's question (I just helped put her poll up), I think we'll leave this one alone.

Would you like to start another poll? I don't believe we can have too many. I'll help.

 

[Melanie]

Thank you Kim.
Theres also one thing, thats wondering for me. When I read, that a parent and a child (or children) have CFS, the parent is the mother. I cant remember, that a father is the parent. Did someone else has read or heard it?

 

[_Kim_]

Thank you Kim.
Theres also one thing, thats wondering for me. When I read, that a parent and a child (or children) have CFS, the parent is the mother. I cant remember, that a father is the parent. Did someone else has read or heard it?

Good question Melanie.

Let's ask: Has anyone known a family where the father had ME/CFS as did his child/children?

 

[coxy]

hi kim, i'm happy to add the other questions others have asked about, the more info the better. Please could you add the questions for me though.
thanks again.
It's aklready looking very interesting isn't it?

 

[Lesley]

I became ill gradually in 2005. My daughter became ill gradually at 10 (in 2007) with the onset of puberty, and recently became worse following the flu. She was able to manage school last year, but after the flu missed 30 days last semester. She managed to keep up at home and made fantastic grades, but the stress of constantly being behind was horrible. It may be time to consider alternatives, but her dad (my ex), who only sees her when she is well, doesn't believe she is sick. He recently suggested a psychologist.

Glad to find some other parents who have been through having a sick child. I would love to hear more about your experiences, but right now it's past my bedtime.

 

[_Kim_]

Hi Leslie

Welcome to the forums.

I'm sorry to hear that your daughter is also sick. It was coxy's hope in setting up this poll to connect with other families that had kids with ME/CFS. I hope that you find some support here with the others who are dealing with such challenges with your children.

Retro mad: Grrrrrr!! <----- to your ex!! :Retro mad

 

[flybro]

I'm not voting my DX says FM & MCS, I have the many CFS sypmtoms.

This might seem daft but I don't want to put it out there that I definately 100% think either of my girls have this.

 

[bakercape]

I voted that both of my children do not have ME/ CFS but they do both have high functioning autism.

 

[coxy]

HI, bakercape, perhaps i should of included other illnesses such as autism especially in the light of the XMRV connection. Nice to meet you.

 

[bakercape]

Coxy
It's a great quiz. Much needed. Nice to meet you too.

I was afraid to have children because I had CFS. But my wife is healthy and we really wanted children so we proceeded. I would not change anything as I love my Kids just the way they are but I do feel guilty that my illness caused there disabilities. Although there is no proof of this I really feel like it is too coincidental to be bad luck.

They are very high functioning. One does A work in school . THe other is needing more assistance but has kept up with modified amount of work and is in sixth grade.
Interestingly many of there symptoms of anxiety, difficulty concentrating and dizziness in one seem to mirror many of my symtoms. One has been diagnosed with a math disorder and I have lost a lot of my ability to do math since CFS onset.

Anyway there is an overlap in symptomology between myself and my boys. I sumetimes wonder if the only difference is I developed normally until I was seventeen and they were born with there disabilities it seems.

 

[Julia Rachel]

Hi Kim:
I have CFIDS (HHV-6A,EBV,CMV and Micoplasma) and my son Blake has CFIDS (HHV-6A and EBV). I have had this since around 1977 and Blake became ill at the age of 14. He has been bedridden on/off for 6+ years with this illness. I am afraid more children have this than we know of.
Blessings,
Julia

 

[Julia Rachel]

Hi Lesley:

Yes....there are "other" parents out there...I am one of them. We have been through what you are going through.
Blessings,
Julia
http://vlgonvalcyte.wordpress.com/

 

[Lesley]

Kim,

I would love to have a place for discussion of issues relating to pediatric CFS/ME. The poll is a start, but it's kind of hidden here under "Lifestyle Management". I could start a thread on a number of issues I am dealing with, but I have no idea where to put it. Any thoughts?

Lesley

 

[creekfeet]

We all got sick at the same time, my two kids and I. One of my kids is bedridden, I'm 90% housebound, and the other kid pushes herself past low energy and a low immune system to go to school anyhow but I can see by her exhaustion and pains that she's at best borderline.