Update from Haukeland on the genetic predisposition project

[halcyon]

In our case, no one on any side of the family, including grandparents, has this illness.

Same here. Nobody in immediate or distant family that has ever had ME as far as I know.

 

[Sushi]

I can also anecdotally confirm the familial clustering.

Me too--my Mom.

 

[JaimeS]

The only explanation I can think of is we're not crazy and it's real or that were so insane we can communicate with each other telepathically.

Even supposing we were all meeting up in PR in a secret chatroom to make sure all our symptoms match, there's that pesky bloodwork.

-J

 

[JaimeS]

Heritability isn't a straight line, though. The study states that you are several more times likely to get ME if you have a family member with ME. But if your chance of having ME in the general population is, say, 1/100, then tripling this is still a 3/100 chance.

Just 'listening' to you guys, though, it seems like the odds are way higher. Maybe we're attracting lots of people with family members with ME because of the title of the thread.

Welll, also, I have plenty of family members who DON'T have ME. It's important to keep that in mind, statistically speaking.

-J

 

[rosie26]

Exciting stuff.

 

[Skippa]

Yep, upwards and sideways family members here.

But once again correlation !== causation.

It is perfectly reasonable to suspect close family members were all exposed to the same pathogen, lived in the same mouldy house, suffered the same traumas, learned the same false illness beliefs (heh)... so it doesn't necessarily point to genes.

 

[justy]

Family affected here too:
Mother - @Skippa - I was adopted and did npot grow up with her, but we BOTH have M.E, although she is more mildly affected. Maternal cousin and daughter. FI myself and my daughter are positive for Lyme disease as well.

 

[user9876]

Yep, upwards and sideways family members here.

But once again correlation !== causation.

It is perfectly reasonable to suspect close family members were all exposed to the same pathogen, lived in the same mouldy house, suffered the same traumas, learned the same false illness beliefs (heh)... so it doesn't necessarily point to genes.

But many families share the same traumas and live in the same mouldy house and don't get ME so these reasons would seem insufficient without additional factors.

 

[Marco]

Its doubtful that any genetic disposition is going to be easy to tease out with small samples and I wouldn't assume that a familial predisposition will always result in the same syndrome or diagnosis.

 

[Skippa]

But many families share the same traumas and live in the same mouldy house and don't get ME so these reasons would seem insufficient without additional factors.

I agree. And I suspect genetics plays a role. Just inconclusive at present...

 

[Sea]

Its doubtful that any genetic disposition is going to be easy to tease out with small samples and I wouldn't assume that a familial predisposition will always result in the same syndrome or diagnosis.

I agree. In my family my father had Myasthenia Gravis, 2 of my daughters have POTS (one severe and one mild) and my third daughter has major depression with severe fatigue.

 

[justy]

But many families share the same traumas and live in the same mouldy house and don't get ME so these reasons would seem insufficient without additional factors.

see my answer immediately BEFORE yours - my genetic mother and I, and a maternal cousin all have M.E. I was separated from my mother at birth and adopted, so we did NOT grow up in the same moldy house etc. Perhaps we are interesting for a research study?

edit - I think I misread your post - sorry!

 

[Sally's]

Hi, I am a Kiwi who has suffered chronic fatigue symptoms since my daughter was born 24 years ago. They have worsened with menopause. I thought I had found my answer when my B 12 was found low, but supplementation didn't help. Then my thyroid functions changed to abnormal, with thyroid antibodies. I started on levothyroxine a year ago and my symptoms got worse, more brain fog, more fatigue, insomnia and more joint pain. These can be side effects of levothyroxine for some patients. After researching on the net I discovered that some genetic deficiency of deiodinase enzymes exists in some people, and can be turned on by pregnancy or viral illness. My Mum developed ME in her fifties before me, so this seemed a possibility. This causes inadequate conversion of thyroxine into the active hormone T3, blood thyroid functions can appear normal. Porcine thyroid extract being a good treatment. I hunted for a GP who would prescribe this and started six weeks ago. My brain fog cleared immediately, my joints stopped aching within a week and my energy levels are improving in leaps and bounds. I wonder how many people have this condition. (I am only guessing that this is my problem as I haven't had the gene test). There is a genetic test for these genes now available in UK (google deiodinase genetic test). I don't know if this correlates with this study. I wonder if some diagnosed with ME may have this genetic deficiency.

 

[2kidswithME]

Definitely a family history with us, my mother, sister, and niece all have had variations on the theme, along with two of my children. However, we can't blame the house as my kids and niece grew up in other countries so had a completely different environment. (In Asia, in cities that regularly make the top ten list of most polluted cities in the world-- which may have contributed to them falling ill.) I missed getting it but about 16 years ago I was diagnosed with Hashimoto's Thyroiditis, which I gather is an auto-immune disease. A few years ago my mother was diagnosed with hypothyroidism; my niece is taking natural thyroid supplement, but that hasn't helped her energy levels, in fact a few months ago she crashed to a lower level, after years of being mildly affected.

 

[msf]

Even supposing we were all meeting up in PR in a secret chatroom to make sure all our symptoms match, there's that pesky bloodwork.

-J

This is why (or one of the reasons why) the psychosomatic ´explanation´ was never even a contender. Since they came up with it before the internet had taken off, and before ME was well publicised, how did they think the patients were all coming up with the same (or a similar) list of symptoms?

Answer: they never listened to the patients´ symptoms.

Yup, that´s some good medical science...

 

[JaimeS]

This is why (or one of the reasons why) the psychosomatic ´explanation´ was never even a contender. Since they came up with it before the internet had taken off, and before ME was well publicised, how did they think the patients were all coming up with the same (or a similar) list of symptoms?

Answer: they never listened to the patients´ symptoms.

Yup, that´s some good medical science...

News reports of hysteria, dontcha know. We all read about the people in Incline Village and then immediately worked on generating those symptoms (which were described in perfect and medically-accurate detail in the reports, of course.)

According to other sources, we all chose symptoms where it was difficult to prove or disprove dysfunction -- thus dizziness, fatigue, etc. Luckily, since all of us had MDs and PhDs before we became sick, we all immediately knew what was provable by the medical science of the time, and were able to arrive at these informed decisions. Or else, we knew instinctively, through the part of our brain that controls 'illness beliefs' just what would be debilitating enough to confine us to our beds, but ephemeral enough that it would be nearly impossible to be taken seriously.

What I don't get is that now that there are more objective means of measuring (neuro)inflammation (Igs, cytokines, MRI more common), why we haven't switched to new symptoms. We need to get on finding some symptoms that have no objective measures, guys, we've been laying down on the job.

...wait.

-J

 

[msf]

Oh, it makes perfect sense now. As you said, the media do such a good job of explaining what the ´yuppie flu´ is.

 

[eastcoast12]

News reports of hysteria, dontcha know. We all read about the people in Incline Village and then immediately worked on generating those symptoms (which were described in perfect and medically-accurate detail in the reports, of course.)

What I don't get is that now that there are more objective means of measuring (neuro)inflammation (Igs, cytokines, MRI more common), why we haven't switched to new symptoms. We need to get on finding some symptoms that have no objective measures, guys, we've been laying down on the job.

...wait.

-J

lol, good point. Next time I'm at the docs I'll tell them that my illness belief has become a bullshit belief. It's a lot more accurate

 

[Hutan]

News reports of hysteria, dontcha know. We all read about the people in Incline Village and then immediately worked on generating those symptoms (which were described in perfect and medically-accurate detail in the reports, of course.)

I first met an Indonesian colleague in late 2014 (I was living in Australia and I and my two children had developed ME/CFS in 2013 - yes, I was still working part-time which involved international travel for a week or so at a time....) After a few months I found out that her son had symptoms that exactly matched ours.

He had initially been admitted to hospital with suspected appendicitis in 2013 and had had his appendix out, which turned out to be fine. My daughter had been admitted to hospital with suspected appendicitis in 2013 but after 3 days it was decided that it wasn't that and she came home. My son and I had had a similar gastroflu/stomach pain thing about two weeks later.

After having his appendix out, the Indonesian boy (aged 14, the same age as my son) then had exactly the same issues with joint pain, with standing upright, with fatigue, sore throats, headaches, gastro issues that we developed after our severe stomach pain.

This boy has minimal English language capability. I don't think he had been reading reports of Incline Village and thinking - ah, this sounds like a good lark.

Or else, we knew instinctively, through the part of our brain that controls 'illness beliefs' just what would be debilitating enough to confine us to our beds, but ephemeral enough that it would be nearly impossible to be taken seriously.

So this possibility seems more plausible.

I personally like the idea of cross-cultural telepathy, where different languages are no constraint combined with a masochistic tendency to want to lose much of what we loved about our lives and have people think we are lazy/crazy. This would neatly cover all those post-Ebola people in African countries also experiencing ME/CFS-like problems.

Edited to add: My daughter, who was first to get the severe stomach pains in our family had spent a couple of weeks in a fairly obscure Indonesian town staying with a colleague of mine, about a month before she became ill. It just so happens that that was the very same town that the Indonesian boy now with ME/CFS symptoms, the son of another colleague of mine, comes from... Although, my daughter has never met the Indonesian boy.