My poll about family members with ME. I have a small sample showing a pattern. I need more data to confirm.

[taniaaust1]

I see others are adding more info then I did in my post so I'll add more too.

Dad's - him and his brothers who have the ME/CFS children all have celiac disease! Of the ones who are on the Autism spectrum.. I do (officially diagnosed, my dad is (though undiagnosed but his is worst then mine) and my daughter is too. My sister who has ME/CFS has a daughter who clearly is on the autism spectrum too (but she refuses to get her tested as she doesnt want that "label" put onto her).

One of my daughters, the one who is on the spectrum. Im sure she has EDS too as she has all those extended flexiability spots (eg can bend her thumb right back so its touching her arm etc) but I never took her for any diagnoses of that as its not causing her issues.

The ME/CFS and EDs link is quite known and has been talked about by some ME specialists (there was some study done at one point with that subgroup).

My father and me both I suspect have actual mitochrondrial disease of some kind too.. he was half deaf at one point as a boy to the point he had a hearing aid and I too have had some of the stranger symptoms of mito disease during my childhood and on a couple of occassions suddenly found I could not walk.

 

[Hufsamor]

Too late really, but it would have been interesting to include a choice for those who have ME, and who have a person who is in close contact with them, who is not a blood relative, that has also has ME. It isn't unique, just uncommon, but my wife and I both have ME, but our adult daughter does not.

I know a couple in the same position

 

[BeautifulDay]

Too late really, but it would have been interesting to include a choice for those who have ME, and who have a person who is in close contact with them, who is not a blood relative, that has also has ME. It isn't unique, just uncommon, but my wife and I both have ME, but our adult daughter does not.

Wow that would be an interesting future study. While my husband doesn't have ME, he has other health issues which make him low energy. If I need to stay in or skip a party, he's perfectly fine with that.

I wonder sometimes if those of us with ME are more likely to have partners who are like ourselves (that is people who have common interests and similar levels of energy) or at least more partners who are understanding of our need to conserve energy and do less. I would presume that for people with ME who have partners with higher energy levels and whose partners are not understanding of the need for energy conservation, that those relationships would either be short or exhausting from a mental standpoint.

 

[ChrisD]

I have ME/Lyme and my mother has Underactive Thyroid issues. My aunt also used to have ME.

 

[WinterWren]

I chose the second option.

My aunt was diagnosed with ME but after about 15 years she developed lupus, she had always tested negative for lupus before that time buts it’s possible the ME diagnosis was incorrect (I don’t have a lot of the details). Seemed like she had classic ME until other things started up.

There are a lot of autoimmune diseases on that side of the family (MS, meniere’s, celiac, and others).

 

[taniaaust1]

Wow that would be an interesting future study. While my husband doesn't have ME, he has other health issues which make him low energy. If I need to stay in or skip a party, he's perfectly fine with that.

I wonder sometimes if those of us with ME are more likely to have partners who are like ourselves (that is people who have common interests and similar levels of energy) or at least more partners who are understanding of our need to conserve energy and do less.

there are quite a lot of cases where both partners or family members get ME at the same time due to some "virus" or whatever the trigger for ME is as dont forget that this illness also appears in outbreaks eg like the one here in Adelaide Sth Aust which affected hundreds back in the 1950s, so there seems to be some contagious component to it too esp at the start of it.

One CFS book in which is written by someone who both him and his partner caught ME/CFS in which he details his story is called "Chronic Fatigue Syndrome" by Gregg Charles Fisher. This book has a section in it written by Dr Cheney.

 

[BeautifulDay]

I'm in the process of following-up with additional questions to poll participants. If you haven't yet done the poll, please do so now and post details below.

If you participated in the poll, but didn't provide details, please do so now so that I can contact you regarding your experiences with ME and health issues.

Thanks!

 

[pamojja]

Voted 'I have ME, and my child or parent has an additional health issue*', though you probably have to ignore my vote, because the other health issues are just common CVD and cancer.

 

[BeautifulDay]

I have ME and my daughter has IBS.

Also my Mum had RA , my Nan had RA , one Aunt has Lupus and another has MS.

Hi @Elvie

For some reason the system won't let me private message you. So instead I'm putting a few follow-up questions for you here. You are welcome to private message me your answers or to post them here and then we can go from there.

In your Aunt with M.S. and your other Aunt with Lupus – are these Aunts on your mother’s or father’s side of the family?

Do you or any of your family members have any of the following:
- Autism, Autism Spectrum, Aspergers
- Thyroid issues (such as Hashimotto’s Disease)
- Early-Onset Alzheimer’s or Dementia
- Ehlers-Danlos Syndrome (EDS)
- Hodgkin or Non-Hodgkin Lymphoma?

Did you do 23andme or any other genetic testing?

Thanks!

 

[kelly8]

I chose number 4. However my son is only 3 years old so we don't really know if he has any issue yet. He does have gluten sensitivity and some other gut sensitivity that I have not been able to figure out.

On my mom's side of the family we can trace the genetic link. Sister has EDS/pots and mast cell, aunt has ms, aunt has crones, second cousin has marfans. I also had an uncle I never met that could have had autism. At that time they were told he was damaged and he was put in a mental hospital. He had progressed normally for a while before this happened. Which is why I think it may have been autism.

There has been lots of depression and anxiety. Lots of issues with not letting go of physical things sometimes to the point of hoarding.

I could have qualified for the EDS when I was younger, but now my body is too broken to do those things. I was an ice skater and did ballet and gymnastics probably because I could get into all those weird positions so easily.

I've got ME, fibromyalgia, chronic Epstein Barr infection, LS, ocular migraines, food sensitivities, IBS, an adrenal tumor and occasionally I get pots like symptoms. I also have periods of anxiety and depression. (I wonder why? LOL.) I was diagnosed with mast cell disorder but I am questioning that diagnosis because as we've worked at fixing my gut my mast cell issues have not been as bad. Occasionally though I still get random hives.

My parents have been ok thus far. However, I'm not so sure they don't have some of the symptoms. My dad has Lyme that he refuses to treat and my mom had a pretty serious case of shingles that has not resolved very well. They both complain of exhaustion all the time but I don't think they would ever do anything about it.

My mom has had some gut issues and is asking me for help so hopefully I can do something to help her.

So totally mother's side.

 

[Heartl]

I have ME and I think my father has it also. He doesn’t know he does, he is 85 and has Multiple Myeloma that has been gradually worsening. Since I have learned I had it about 25 years ago I started noticing some of the same symptoms that I have he has had. His was not as noticeable as mine. He worked hard his whole life but always complained about mental fatigue and rested on weekends so he could work all week. He also has ADD very bad that has gotten worse.
Most of my family can’t handle gluten.
Most of my family suffer from anxiety.
Leukemia runs in my dads side of the family

 

[Dechi]

I have ME but nobody else in my family has it or other diseases you mentioned in your post. Hope I answered right.

 

[robson]

I have ME and Hashimoto's. My dad has early(-ish) onset of Alzheimer. My aunt has severe thyroid issues.

 

[Learner1]

Voted 'I have ME, and my child or parent has an additional health issue*', though you probably have to ignore my vote, because the other health issues are just common CVD and cancer.

I had my blood drawn by Ron Davis' group and they told me there is a cancer subset. Both my parents and I habe had cancer, so I find it hard to ignore.

 

[BeautifulDay]

I have ME and Hashimoto's. My dad has early(-ish) onset of Alzheimer. My aunt has severe thyroid issues.

Hi @robson

For some reason the system won't let me private message you. You are the second person I've run into with this. Maybe you are setup to not get messages. So instead I'm putting a few follow-up questions for you here. You are welcome to private message me your answers or to post them here and then we can go from there.

When did your dad first start showing signs of Alzheimer’s (at what age)? How severe is he now and how old? I’m looking at age and severity over time. The more details you can give, the better.

Do you or any of your family members have any of the following:
- Autism, Autism Spectrum, or Asperger’s
- Ehlers-Danlos Syndrome (EDS)
- Hodgkins or Non-Hodgkins Lymphoma
- Multiple Sclerosis
- Lupus
- Crohn’s
- Gastroparesis?

Did you do 23andme or any other genetic testing?

Thanks!

 

[BeautifulDay]

I had my blood drawn by Ron Davis' group and they told me there is a cancer subset. Both my parents and I have had cancer, so I find it hard to ignore.

Great insight. Thanks @Learner1

 

[robson]

Hi @robson

For some reason the system won't let me private message you. You are the second person I've run into with this. Maybe you are setup to not get messages. So instead I'm putting a few follow-up questions for you here. You are welcome to private message me your answers or to post them here and then we can go from there.

When did your dad first start showing signs of Alzheimer’s (at what age)? How severe is he now and how old? I’m looking at age and severity over time. The more details you can give, the better.

Do you or any of your family members have any of the following:
- Autism, Autism Spectrum, or Asperger’s
- Ehlers-Danlos Syndrome (EDS)
- Hodgkins or Non-Hodgkins Lymphoma
- Multiple Sclerosis
- Lupus
- Crohn’s
- Gastroparesis?

Did you do 23andme or any other genetic testing?

Thanks!

He was ca 65 years old at onset.
He is now 76 years old.
He is now moderate in a mild/moderate/severe Alzheimer severity ratings scale.
His degeneration is very slow, but steady.

Neither me or my family has any of the other diseases/conditions you mention.

I have not done 23andme or any other genetic testing at any time in my life.

Hope this helps. Good luck with your project.

 

[Mary]

@robson - you are set up to send and receive private messages now. There's a short "probation" period for new members before they are allowed all the privileges of membership, and that's over now for you.

 

[BeautifulDay]

Thank you everyone for your responses. If anyone wants to be part of the poll and add your information, there is still time.

 

[taniaaust1]

Just saw your post to the other.. If you are looking at a link between Alzheimers and ME.. I think I did not put in my post that my 23andME test said I have the gene for Alzheimers, so at increased risk for this.

My grandmother I believe had Alzhemiers but died of blood poisoning before it was diagnosed but we as a family had been wondering what to do with her as she was refusing to see doctors and very obviously had over a couple of years been suffering from Alzhemiers to the point that a retirement home we were going to put her into, said they would not take her due to her Alzemiers symptoms already being there. She got the symptoms in her mid 80s.

........

https://www.smh.com.au/national/riddle-of-the-quiet-killer-20020504-gdf907.html "Jeremy's girlfriend, who is now recovering, has also suffered with CFS, which began after both came down with glandular fever five years ago. But those facts have sparked not a sniff of interest from local researchers, Jim Chambers said"

(posted that as some dont seem to be aware how common it is for both in a couple to get the illness.. but Ive heard of many cases where both do but then of cause genetic links may still be involved when both people develop something from the same trigger)