Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Evidence for a Heritable Predisposition to Chronic Fatigue Syndrome

Discussion in 'Latest ME/CFS Research' started by eric_s, May 28, 2011.

  1. eric_s

    eric_s Senior Member

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    It seems there's a new study out. Some of the authors might not be very popular anymore among some parts of our community... Nevertheless, i think it might be interesting. But it shouldn't distract from HGRV, in my opinion.
    But who knows, maybe it will all be part of the explanation, genetic predisposition, HGRV and coinfections and other factors like toxins, lifestyle, vaccinations, etc. Just speculating, of course.

    Delete, if there's already a thread.

    Here's the link:
    http://www.biomedcentral.com/1471-2377/11/62

     
  2. mellster

    mellster Marco

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    Thanks - I do beiieve there is a strong likelyhood for heritable predisposition (as there is for so many other conditions), it would be foolish to dismiss it just because one doesn't like it. This would also make sense of the cluster outbreaks - probably with one or more viral factors at play - within families. On the positive side it shoud make additional predisposition for other illneses/conditions in other than a temporal/transient context less likely and makes it - once the contributing factors are identified - treatable. This is for obviously for CFS, it might not apply for ME.
     
  3. Live And Let Die

    Live And Let Die Senior Member

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    I'm 100% sure there is a heritable predisposition. Two of my fathers cousins have chronic Lyme, one of their kids caught mono twice, my sister caught mono once and I have cfs.
     
  4. eric_s

    eric_s Senior Member

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    Why do you think so?

    I don't know how much it matters they say "CFS" here. In the end what makes the difference is what criteria where used for the selection of the subjects. I have not looked at the paper yet (and ususally don't) and right now, i need a break.
     
  5. mellster

    mellster Marco

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    Here's why: One or multiple viral causes/triggers are very likely at this point. If you believe in the cluster outbreaks, then you have to assume that the participating viruses are far more contagious than for example HIV. So you can assume viral triggers and opportunisitc infections at play that do not affect the majority of the current population, assuming they all come in contact with those pathogens at some point in time but the immune system usualy fends off the pathogens without going haywire. That leaves predisposition (or simply bad timing) as a very high likelyhood. With every condition that comes along with predisposition, there are also those who develop it without predisposition. I cannot verify their numbers but I have no reason to believe they are fake and statistics seem to indicate some sort of predisposition.
     
  6. In Vitro Infidelium

    In Vitro Infidelium Guest

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    Nicely summarised - a paragraph that anyone struggling to grasp the intracacies of M.E/CFS would do well to ponder over.

    IVI
     
  7. eric_s

    eric_s Senior Member

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    Thanks mellster. I was a bit unclear, i would have liked to know how you come to this conclusion:
    It was a tough day, so i wasn't really clear.
     
  8. Cort

    Cort Phoenix Rising Founder

    I agree - great summary. It appears that SARS is also a risk factor for CFS; that means a wide variety of pathogens appear to be able to trigger CFS in a subset of people who become infected....this suggests some sort of genetic predisposition to being unable to deal effectively with these pathogens either because they become entrenched or because they some sort of change is initiated early on in the infection.

    The authors want to now do genetic studies on families with high incidences of CFS. They should, I would think, be able to determine rates of other co-morbid illnesses (my mother died of an autoimmune disorder and she had a distant cousin with MCS), and then hopefully at some point down the road, match up immunological and pathogenic test results with their findings showing that X genes are associated with say, low natural killer cell functioning or herpesvirus activation, etc...

    I think this is a great foundation for further studies.
     
  9. mellster

    mellster Marco

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    Eric, this was just a guess, but a predisposition for CFS - if found through gene expressions - would clearly separate it from other hereditary markers that are responsible for predisposition for other conditions. It would also help to design treatments consisting of new technologies (like CVAC) and supplements + natural - if necessary - manufactured antivirals tailored to the individual and their degree of genetic expression and hormonal/enzymatic dysfunction vs just throwing antidepressants + psychotherapy at them. For example I read that Pete Sampras has Thalassemia (genetic disorder which impairs athletic function and blood volume), but somehow he managed to get into such great athletic shape to become the Men's number 1 tennis player for years - this cannot be achieved without carefully crafted tailored supplemental and medical therapy and is utterly amazing.
     
  10. eric_s

    eric_s Senior Member

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    Yes, but how would you fix something like that? Can you fix a genetic problem?

    Well, ok, it might be possible to fix the effects or contain the problem somehow. But i'm just guessing, i have no idea of these things.

    It could be helpful for prevention, certainly.

    I still hope HGRVs will provide a quicker and easier "solution".
     
  11. eric_s

    eric_s Senior Member

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    Wow, yes, so it's certainly possible to treat certain such problems...
     
  12. mellster

    mellster Marco

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    I also think that - while some of the "recovered" celebrities never might have had CFS in the first place - that some of the athletes or other famous people with CFS that seem to be doing amazingly well are not lying about their condition, but simpy benefit from advanced medical, tailored, treatment (24/7 care) and thorough examination/testing since they are famous, important, and mostly because they have a boatload of money. A "normal" person with CFS needs to do their own research, push/educate their doctors and more carefully ponder expensive treatments.
     
  13. eric_s

    eric_s Senior Member

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    I doubt that you can "fix" ME/CFS with enough money. I mean even at Stanford or Harvard they don't seem to know how to do it (at least that's my impression). And the same seems to be true for the other famous ME/CFS docs like Bell, Peterson, Cheney, Klimas, Lerner etc. Do you have any numbers for their success rate? I don't, but i don't think it's very high. I know that in some subgroups they have good successes though. I once heard Dr. De Meirleir in a video say that in a person younger than 30 years he's not happy if he can't achieve a 90% recovery. I mean i hope he's right, but i can't believe he achieves this more often than not. Also look at Andrea Whittemore for example. They have enough money, but she did not recover, i think. Dr. Deckoff-Jones even said from her emails she gets the impression the people with less treatment are doing better. That's only one person and you don't know why she said that, but i don't believe that at this moment there are doctors that can get a majority of patients back to near normal and they then stay this way.
     
  14. mellster

    mellster Marco

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    Yeah it's defintely very tough, and I would also differentiate between ME and CFS, I think as of now CFS has a higher chance of recovery. It seems that most people in treatment with the topnotch speicalists on this forum do get better though, albeit slowly. I have no numbers but I think most of the topnotch doctors claim around 60-80% success rates (that is getting better, not complete recovery), which is not bad.
     
  15. Graham

    Graham Senior Moment

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    What if the cause of ME was viral but one that is difficult to pass on? Wouldn't that necessarily cause clustering in families? An indication would be if "living-in" sons-in-law and daughters-in-law were more likely than usual to pick up the disease, and something niggles at the back of my brain that some study found such a trend (but do I trust my memory?). This is pretty much like the nurture/nature debate on IQ that was all the rage in the 60s and 70s. The only real test is with identical twins, separated at birth and brought up in very different environments. There isn't much of that about, so it is very hard to come to clear conclusions. In the meantime, we beat ourselves up about being responsible for our children getting it.

    One observation about it being a virus that is hard to pass on is that teachers and medical workers seem to be more prone to it than other professions (I don't have any data to back that up though, so it could be rubbish). If it were true, there's nothing like children and ill people for spreading viruses effectively. I used to teach, and although I wasn't related to any of the kids in my classes, I'd end up sharing a lot of their germs.

    All of us are different in our genetic makeup, so always some of us will be more predisposed to some things than others. There's nothing unusual about that. I'm not convinced that we will be able to glean much from this, and like the IQ studies, I think it will fizzle out. After all, the key question in both cases is how can we improve things, and, sadly, a move to thinking it could be largely genetic could well discourage more research. There's nothing that motivates politicians more than the fact that it could affect them.

    Have I earned my cynicism spurs yet?
     
  16. eric_s

    eric_s Senior Member

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    Yes, that's really not bad. On the other hand, it depends of what "getting better" means, of course. I didn't have any treatment so far and would say my trend has also been upwards, but slowly. And the same seems to be true for other untreated people as well. I'm not saying doctors can't help, i'm sure they can and there's also scientifc data that shows this. But i wish we had more studies and clinical trials. Rather than having to guess from what we hear others tell us. Also how are they supposed to treat you successfully, if they don't even really know what ME/CFS is? So i would put more emphasis on research.

    How do you differentiate between ME and CFS? There are multiple definitions for both, i think. I still believe it's one and the same thing, but under the CFS label there are a lot of people who have nothing or something else. It's a horrible name of course that should be abandoned (CFS). And some of the CFS definitions are crap and should not be used. Also Fukuda is not perfect at all, but if this was the worst definition that has ever been used, we would probably be much better off.
     
  17. eric_s

    eric_s Senior Member

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    Don't Brits already get born with them? Lol, sorry, i'm only making fun, maybe i spent too much time arguing with Brits lately.
     
  18. Tulip

    Tulip Guest

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    They didn't even get the history of the illness right!. The term CFS was invented in 1988, it didn't come to attention in the 1980's it had been recognised since 1934 as M.E.. It was medically explained back in the 1980's as the youtube video "cdc cover up of cfs" clearly shows through the MRI brain scans that Cheney and Peterson did with their own money, clearly showing the brain scans of patients at the Incline Village outbreak were almost identical to the brain scans of AIDS patients - it was an outbreak of M.E. Seriously these factually incorrect "studies" ping me off bigtime.
     
  19. Graham

    Graham Senior Moment

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    Thanks eric. I'm not sure that I was born with them, but they were welded on at an early age (I grew up in a Scottish steel town in the middle of England). I reckon it's great that we still have the attitude to argue and the humour to accept it all - ME can so easily grind people down.

    My son has had ME since 1989: I have had it since 1999. My mum doesn't think there's anything in this hereditary aspect, because he got it first! She is in her eighties, and it's a challenge to explain it.
     
  20. Cort

    Cort Phoenix Rising Founder

    Several MRI studies were done...and the brain scans were not determinative..if they were the name and future of this disorder would have changed dramatically. The MRI studies showed increased profusion of white spots, I think they were, but they weren't localized and were often found in different areas in different patients brains. Plus some healthy people have the same spots...if the Brain studies had show localized deficits consistently across the patients - that would have changed things. Unfortunately while people with CFS had increased incidence of these white spots it was hard to figure out what they meant.

    They said chronic fatigue syndrome came to 'attention' in the 1980's not that it was created then. ME never came to attention....that was the whole problem, yes there was a paper ever now and then but neither the research world nor the media ever gave it much attention....
     

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