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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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

Pick the first (top) answer that applies to you. Then elaborate below in a post.

  • I have ME, and my child or parent has ME.

    Votes: 16 14.0%
  • I have ME, and my sibling, cousin, aunt, or uncle has ME.

    Votes: 7 6.1%
  • I have ME, and my child or parent has an additional health issue*

    Votes: 21 18.4%
  • I have ME, and my sibling, cousin, aunt, or uncle has an additional health issue*

    Votes: 18 15.8%
  • I have ME, but no close blood relation has ME or an additional health issue*

    Votes: 50 43.9%
  • I don't have ME, but my child or partner has ME, and he/she has a child or parent with ME.

    Votes: 0 0.0%
  • I don't have ME, but my child/partner has ME, & he/she has another family member with ME.

    Votes: 1 0.9%
  • I don't have ME, but my child/partner has ME, & has a child/parent with an additional health issue*

    Votes: 0 0.0%
  • I don't have ME, but my child/partner has ME, & has another family member w/additional health issue*

    Votes: 0 0.0%
  • I don't have ME, and I am not caring for anyone with ME.

    Votes: 1 0.9%

  • Total voters
    114

Snow Leopard

Hibernating
Messages
5,902
Location
South Australia
I chose "I have ME, but no close blood relation has ME or an additional health issue", I had to choose this option as the specifically listed health issues did not apply.

However, a family member has type 2 diabetes, several immediate family members each have one of several different autoimmune disorders, including Type 1 diabetes, Immune thrombocytopenic pupura, Hashimoto Disease.
 
Messages
5
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!


Sorry about the delay . I've only just seen this.

Both Aunt's are my Mum's sisters

No, my family don't have any of those conditions..... and i haven't done anything like 23andme.
 

valentinelynx

Senior Member
Messages
1,310
Location
Tucson
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.
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 just looked at the Amazon page (using your link above) and the book is only free if you sign up for "Kindle Unlimited" which is a subscription service on Amazon that costs $9.99 per month. Otherwise, the book costs $7.99. It is now March 6, 2019. Just thought I'd let you know, if you did intend the book to be free of charge, it isn't (not yet anyway)...
 

wigglethemouse

Senior Member
Messages
776
I just looked at the Amazon page (using your link above) and the book is only free if you sign up for "Kindle Unlimited" which is a subscription service on Amazon that costs $9.99 per month. Otherwise, the book costs $7.99. It is now March 6, 2019. Just thought I'd let you know, if you did intend the book to be free of charge, it isn't (not yet anyway)...
@BeautifulDay has been making the book free for one day only - which would have been Feb 15th. Maybe another day slot can be made available for you. It's an interesting read along similar topic lines as Alan Lights last presentation
https://forums.phoenixrising.me/thr...te-to-cause-me-cfs-with-alan-light-phd.62439/
 

BeautifulDay

Senior Member
Messages
372
I just looked at the Amazon page (using your link above) and the book is only free if you sign up for "Kindle Unlimited" which is a subscription service on Amazon that costs $9.99 per month. Otherwise, the book costs $7.99. It is now March 6, 2019. Just thought I'd let you know, if you did intend the book to be free of charge, it isn't (not yet anyway)...

I can only make it free for 5 individual days total over three months (Amazon doesn't allow me to do any more than that). Whenever anyone asks here for a free day, I put it free for a single day on Kindle. That way, anyone can pick it for free on that specific date.

I've just set it to be free on March 15th. I hope that helps. :snigger: