Article: All in the Family: A Real Disorder After All? the Albright CFS Heredity Study

Article: All in the Family: A Real Disorder After All? the Albright CFS Her

You can view the page at http://forums.phoenixrising.me/content.php?522-All-in-the-Family-A-Real-Disorder-After-All--the-Albright-CFS-Heredity-Study

 

This is great news! I'm one of those who suspects a genetic component to ME/CFS. My family has 3 members diagnosed with ME/CFS and persistent herpesvirus infections. And those are just the ones that have been diagnosed; I suspect at least one other. We've also had Hodgkin's Lymphoma in several generations. So it seems reasonable to me that a subset (at least) of ME/CFS patients have a genetic issue that affects our ability to handle herpesviruses. I'm thrilled that someone is finally looking into the possibility of genetic abnormalities in PWME. It may not answer all our questions, but it might give some better directions to investigate.

Thanks, Cort, for this interesting article.

 

This is great news! I'm one of those who suspects a genetic component to ME/CFS. My family has 3 members diagnosed with ME/CFS and persistent herpesvirus infections. And those are just the ones that have been diagnosed; I suspect at least one other. We've also had Hodgkin's Lymphoma in several generations. So it seems reasonable to me that a subset (at least) of ME/CFS patients have a genetic issue that affects our ability to handle herpesviruses. I'm thrilled that someone is finally looking into the possibility of genetic abnormalities in PWME. It may not answer all our questions, but it might give some better directions to investigate.

Thanks, Cort, for this interesting article.

Really interesting, SOC. That's alot of members in your family. In my family my mother sticks out her autoimmune disorder and she had a distant relative with MCS. Other than that we're pretty clean I think. I thought Dr. Lights suggestion that a single mutation may be causing CFS in some people was really intriguing. It makes me think he has some unpublished data that's indicating that (?).

In any case - the study was good news and it was good news to have Dr. Albright involved - she is one busy and apparently quite well-known researcher. I hope they can get more funding.

 

Really interesting, thanks Cort.

 

I'm about to post an article on the Clauw talk at the Conference. The genetic connections to FM are really strong. Its interesting that they're strong in autoimmune disorders given the speculation that ME/CFS might be one. I wonder if the genetic underpinnings of all these disorders will end up being somewhat similar (???)

 

Excellent interview, thanks Cort.

 

Very interesting. Both my mum and I have m.e. I'm severe, my mum is moderate. My cousin, my mum's niece, has fibromyalgia.

 

Personally very interesting too Cort - my brother (miles away) about the same time diagnosed with certain viruses (he's a Doc) and we have always thought immune dysfunction from shared genetics. Still thinking that some "insult" tipped the balance from weak immune system to non-functioning/autoimmune.....we were both in our 60s at onset and symptoms classic ME. His diagnosis (US) now includes autoimmunity.

Another nice piece of the jigsaw Cort.

 

Thanks Cort. Good to hear there are researchers interested enough to make grant applications.

The Albright et al CFS study is available for free at: http://www.biomedcentral.com/1471-2377/11/62

 

Personally very interesting too Cort - my brother (miles away) about the same time diagnosed with certain viruses (he's a Doc) and we have always thought immune dysfunction from shared genetics. Still thinking that some "insult" tipped the balance from weak immune system to non-functioning/autoimmune.....we were both in our 60s at onset and symptoms classic ME. His diagnosis (US) now includes autoimmunity.

Another nice piece of the jigsaw Cort.

Thanks Enid - interesting about the auto-immunity issue. It turns out at least in women there is a section of the X (?) chromosome I think it is that researchers are very interested in. I wonder if the same section will show up in CFS as well (wouldn't that be exciting )

I have a twin - he doesn't have CFS but he does have problems with incorporating stimuli and depth perception at times.

 

Interesting! We have 4 cases in the family: my grandfather ('50-'70), my father ('80-now), a cousin ('90 - now) and myself (90-now). My youngest son of 7 suffers PEM already ...
I just went to a genetic specialist and awaiting the results to see if they find something "suspicious" that could explain the "CFS" symptoms.

 

Interesting! We have 4 cases in the family: my grandfather ('50-'70), my father ('80-now), a cousin ('90 - now) and myself (90-now). My youngest son of 7 suffers PEM already ...
I just went to a genetic specialist and awaiting the results to see if they find something "suspicious" that could explain the "CFS" symptoms.

Four cases dating back to your grandfather with both males and females involved. You guys are ripe for a study! Let us know if they turn up anything...

 

I really like this article and study! Thanks. But the title is insulting, "A real disorder after all?" ... yeah we can wade through the corpses and see that is, in fact, the case. Pretty sure it's real. However, besides my rant on the title, it is a very promising study.

 

I wonder if these genetic studies of ME/CFS running in families take into account and control for the possibility that, as well as sharing genes, family members living together for many years may also share viruses. If a chronic viral infection is only slightly contagious, it may not very easily spread to individuals from outside the family home, but over years of household contact, such a virus may spread to many family members in the home.

The late Dr John Richardson, a GP from the Newcastle area in England, spent 40 years taking comprehensive notes on his observations of enteroviruses spreading among family members that attended his practice, the virus giving one family member perhaps ME/CFS, and another member heart problems, and another perhaps some autoimmune condition, and so forth.

 

Many years ago I was in the second round of a study into CFS genetics (they were not using an ME definition). They had found a family with many members with CFS, and identified a defect in cortisol binding globulin. I was part of the follow up to find out if many CFS patients had the gene. We did not. There may be many specific gene problems that result in ME-like symptoms. I can only hope they find something and its treatable. I wonder how many ME patients have been tested for genetic defects in cortisol binding globulin? I think it possible several would be PR members, even if its quite rare, and probably none of them know it. Its good to have this kind of study because over time we can identify more and more problems, and those who have that particular problem can get specific treatment. Meanwhile as more and more genes are implicated we might get a better understanding on ME generally. Bye, Alex

 

I wonder if these genetic studies of ME/CFS running in families take into account and control for the possibility that, as well as sharing genes, family members living together for many years may also share viruses. If a chronic viral infection is only slightly contagious, it may not very easily spread to individuals from outside the family home, but over years of household contact, such a virus may spread to many family members in the home.

They probably do. But there are also cases, like my family, where some of the people who are ill never lived in the same household and were rarely even in the same room together.