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

[GodGenghis]

My mother has ME. I have ME. I have seven siblings and two of them have ME as well.

 

[Research 1st]

I have ME/POTS and at least one parent does also, as my mother developed CFS presentation about 20 years after me.

One important issue is because it's taken so long, this is easy to excuse as 'elderly person's' syndrome, yet my mother has classic PEM (delayed onset) and now multiple autoimmune illnesses, my dad too. Of note, it's taken them to become old, for their immune systems to become impaired. They now walk around the house, with a mysterious permanent cold that never goes away - precisely like myself.

Looking back, when I had grandparents still alive, none of them had a mysterious cold that went away, and none of them had PEM or autoimmune illnesses either.

Basically because of my parents age, no one will diagnose them with CFS, but one good thing about this, is no one also recommends CBT/GET as my parents would both laugh at any doctor who said that. This is the only advantage in being older with CFS, is the whole psychiatric idea becomes so absurd to people in their 70's or 80's. Yet when we were young, doctors fully believed we were somatizers, school phobics and malingerers.

 

[knackers323]

I have ME
grandmother has lupus
Brother has crohn's

 

[BeautifulDay]

I have ME/POTS and at least one parent does also, as my mother developed CFS presentation about 20 years after me.

One important issue is because it's taken so long, this is easy to excuse as 'elderly person's' syndrome, yet my mother has classic PEM (delayed onset) and now multiple autoimmune illnesses, my dad too. Of note, it's taken them to become old, for their immune systems to become impaired. They now walk around the house, with a mysterious permanent cold that never goes away - precisely like myself.

Looking back, when I had grandparents still alive, none of them had a mysterious cold that went away, and none of them had PEM or autoimmune illnesses either.

Basically because of my parents age, no one will diagnose them with CFS, but one good thing about this, is no one also recommends CBT/GET as my parents would both laugh at any doctor who said that. This is the only advantage in being older with CFS, is the whole psychiatric idea becomes so absurd to people in their 70's or 80's. Yet when we were young, doctors fully believed we were somatizers, school phobics and malingerers.

Hi Research 1st,

Thank you for participating in the poll. I don't believe you are setup for private messaging. Here are a few follow-up questions. You can respond here or private message me. Thanks for helping with this.

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

Did you do 23andme or any other genetic testing?

Thanks!

 

[antares4141]

I've always attributed my CFS/ME to pesticides and other exposures. Mold drives symptoms and makes me bedridden. Although even when I control for this aspect (mold) It's a roller coaster ride. Unless I push myself than I can predictively expect to crash. I thought gluten drove GI issues but been doing a gluten challenge (posted recently on this) and can't tell weather it's affecting me or not. My fear there is that the symptoms are not readily apparent like allergies. More like being put in a pot of warm water and gradually turning up the temp. I have an appointment for an endoscopy at the end of this month. (oct 2018)

 

[wabi-sabi]

I am the first and only in my family to have ME/CFS. Didn't even know it existed before I got it. Migraines run on my maternal side, but other than that it's just the usual run of first world chronic disease.

 

[Judee]

I have ME/CFS and several family members have auto-immune such as Hashimoto's (sister, mother) or Lupus (Aunt, grand-niece and possibly grand-nephew.)

Edit: Mom and I did 23andme but I'm not sure about the others. My niece mentioned having her kids genetically tested but I'm not sure if she ever did.

 

[jesse's mom]

I might have misunderstood the poll.
My adult son has a touch of Asperger's, he also had major trouble with ADHD my grandson on that side is on the Autism spectrum. Their father was told to get off gluten five years before he died in '05
My daughter got EBV when I was becoming symptomatic, three years after we knew a bit about what was going on with me. many of her joints fold, her thumbs go easily to her wrists as did mine when I was younger. She is double jointed in most of her body.
My half sister has profound autism and Down's syndrome. Our father has a bad back, really bad.
My mom has dementia at 74. Her mother, and my father's mother both died of lung cancer, I never think of that because they smoked cigarettes.
Should I change my answer... duh.

 

[jesse's mom]

Do we know what the autism connection is?

 

[Hufsamor]

https://www.omf.ngo/2017/10/19/treating-autism-and-mecfs-could-one-drug-do-both/

I hope this might help?
But I don't know if you read this much?

I don't understand the explanation given...
So I can't explain or give you the main points..

 

[jesse's mom]

interesting.

 

[tinacarroll27]

I have ME, IBS, and SIBO and possible MCAS though not diagnosed as yet but I fit the criteria for MCAS. My mum had allergy and severe asthma which caused her death at 24. My gran had RA and IBS.

 

[kafka]

I haven't read the entire thread yet....

I have ME - both my daughters have ME
Some auto immune disorders in my two brothers - one has Ankylosing Spondylitis (my son shows some very mild signs of this - but no diagnosis) and the other adult onset Type 1 Diabetes
My father had non hodgkins Lymphoma, and my mother Thyroid issues
My husband and his mother have Macular Degeneration...

My daughters and I have done 23 and me testing

@BeautifulDay I read your book though most of it went right over my head...

Edited to add - parents info and DNA testing

 

[gbells]

The bad thing about this survey is that it doesn't account for people who live alone. This will wreck its useability.

 

[anni66]

My daughter has ME. Glandular fever was trigger though there were signs of poor immune function, issues with herpes virus ( shingles age 10) and phase 2 detox issues prior to this.

My maternal aunt has ME, developed around 3-4 years ago, trigger unknown ( postulated as being effect of multiple vaccinations for trip to India after low immune function for a number of years) . She also had hepititis when young and partial thyroidectomy.

Bith aunt and daughter had stressful incidents immediately prior to ME. Bullying and suicide of family member.

Maternal cousin ( male) has lupus.

 

[jen1177]

I have ME and IBS, celiac disease, Hashimoto's, Graves', endometriosis, migraines, fibromyalgia, adrenal insufficiency, interstitial cystitis, and something is wrong with my muscles--keep getting injured and taking forever to heal. I also have MCS, and apparently chronic shingles, and possibly something wrong with parathyroid function.

My mom has IBS, fibromyalgia, migraines. My dad has mild IBS, migraine syndrome without headache, sensitivities to some foods.
My mom, brother and grandmother and myself all have celiac disease, but I seem to be the overall sickest.
Everyone in the family is emotionally sensitive and tends to overreact to things, as well as to environmental stimuli especially sound/noise. Like we all have a tendency towards being on the autism scale, but none of us has autism or aspergers. Although, I am so highly sensitive to everything, I used to wonder if I had mild aspergers.

All my family members were able to live their lives in a normal fashion except for me. I became disabled by ME and chronic illness at age 32.

 

[knackers323]

@BeautifulDay when are the results due?

 

[BeautifulDay]

Good morning @knackers323

I’m sorry you missed it. The results were too extensive with too many references to put in a post. I wrote a book about the results and made it free to people here when it first came out. I want to make sure you get a copy, so I’ve made the book free for anyone on February 15th, 2019. If you are interested, please pick up a copy then.

If you are not familiar with Kindle’s e-book, you don’t need a Kindle to download and read books. You can download the Kindle reader for free on a computer or smart phone. Here is the link to download the Kindle Reader.
https://www.amazon.com/gp/help/customer/display.html?nodeId=GZSM7D8A85WKPYYD

Here is a link to the book. Please wait until February 15th when it’s free to pick it up.
https://www.amazon.com/dp/B07KWC61F7

I’m working on a version for non-science oriented readers. The book that I put out first was written for researchers.

 

[Rufous McKinney]

My mother and I share intestines (IBS-d type); psychology (depression) and I get insulin resistance from both parents. I know numerous deficiencies here are genetic, but not via testing.

 

[Navid]

@BeautifulDay

Did you share book with Ron Davis' team?