Can ME/CFS run in families?

Discussion in 'Fibromyalgia Main Forum' started by Bunchy, Jun 19, 2009.

  1. Bunchy

    Bunchy New Member

    I have quite bad FM/ME/MCS which developed after Mono and many other infections which I had in quick succession on the lead up to Mono.

    I've been ill for over 20 years but actually became severely ill after the first seven years.

    My sister caught Epstein Barr five years ago and got ME/CFS but a milder version but she only partially recovered. She can work part time (I can't) but has developed chronic vertigo and is having a lot of chest infections. I'm really worried she will end up as bad as me.

    Does this run in families? No-one in either of my parent's families have it except us two sisters.

    Why did we get it when the only thing that runs in our family is arthritis and heart attacks (the heart attacks were caused in one grandfather's case probably by heavy smoking and drinking and in the other grandfather's case was stress induced)???

    Just curious on people's opinions.

    Love Bunchy x
  2. frickly

    frickly New Member

    I beleive that it does run in families but feel it manifests itself in different ways from person to person. My grandmother has fibromyalgia. However, I beleive that when we find the cause to this illness it will show that there are many illness that can result including MS, RA, allergies, asthma and even autism, adhd and related syndromes. If you look at how DAN! doctors are treating autism you will find that it is almost identical to the methylation block treatment for CFS.
  3. ladybugmandy

    ladybugmandy Member

    i believe there is a genetic defect in some people that renders them unable to induce latency of the herpes viruses.

    i have CFS and my sister, at age 7, developed developmental delay (autism spectrum?) and has severe OCD too. she lives in a mental institution. i often wonder if her illness was caused by a virus too.

    bunchy.....has your sister tried antiviral treatment? i often read about people who have just EBV, take valtrex or famvir, and recover completely.

  4. panthere

    panthere Member

    have you being doing just simplified methylation protocol or full yasko one? i started with simplified and once i got my genetics, i slowly added the rest. well, still adding...can you tell me how you are feeling? i have been on it for about 2 months with not much to show other than bad detox!
  5. Bunchy

    Bunchy New Member

    I can't do the methylation as I cannot tolerate synthetic vitamins especially B vitamins and derivatives. I take a good green food supplement though which has all these vitamins in a natural form.

    We can't get docs to prescrive anti-virals here as the UK practise is to refer all patients for GET and CBT and the NHS doesn't offer real treatments.

    I do believe there is an environmental component but I am not sure what my sister and I would have been exposed to in the past that made us vulnerable to these DD's later on.

    None of the rest of my family have anything like these DD's although, yes, there is rheumatoid arthritis in the family so I guess inflammation is hereditary but it still doesn't explain to me the reason why only my sister and I got these DD's or why my central nervous system is completely messed up these days (peripheral neuropathy but ALL OVER) and why my sister who was very healthy cannot recover from her milder case.

    I am grateful for all posters input - thank you.

    Bunchy x
  6. cfsgeorge

    cfsgeorge New Member

    From looking at the history of CFS, I do believe it's both genetics and environmental whether in combination or separately.

    There has to be a genetic component because you cannot deny those who have CFS that runs in the immediate family.

    On the other hand, there must also be an environmental only component as well when you look at the sporadic, epidemic, and GWS cases of CFS.

    Sporadic cases are found in most cases of CFS with no other family involvement. Epidemic cases(ie: incline village) of CFS point to an environmental cause possibly an infectious cause. And the largest group of unrelated PWC are the veterans of the 1991 persian gulf war who "contracted" CFS. I really think studying the GWS veterans is the huge clue to the cause(s) and pathophysiology of CFS. I don't think we've studied them enough.
  7. pitoune

    pitoune New Member

    Both my sister and myself suffer with FM but to different degree. My sister is still working for now but has been getting worse in the last few years. On the other hand, I'm stuck in an electric wheelchair due to DDD and now over 10 herniated discs that they won't fix until I'm paralysed.

    My aunt also suffers from FM. My hubby is showing lots of signs of GWS as he was there during the Golf War. He now receives a Veteran pension for his condition and retired from the Forces after 27 years. My FM started after he came back, within 1 year but I have to say that I had a mega car accident too. I don't know if it's related to what he's got and if he could have brought back something from overthere or if the accident was the starting point for me.

    One way or the other, I do believe that it does run in the family even if none of my parents did have it but dad's sister does. I agree with cfsgeorge that a study of the GWS veterans should be done more closely to look at the cause/pathophysiology of FM/CFS.

  8. Bluebottle

    Bluebottle New Member

    Yes, Dr Jonathan Kerr has been studying the genetics of M.E./CFs; if you search you will find the info here.
  9. cfsgeorge

    cfsgeorge New Member

    pitoune-Is your hubby diagnosed with GWS? What are his symptoms and what does he think of all this? Look into the papers and studies written by Dr Nicholson on GWS and CFS.

    bluebottle- Dr Kerr has done a fantastic job of studying the genetics of ME/CFS. But how do you explain GWS and epidemic(infectious) causes with his genetics model? I think these two groups were purely enviromental causes because of its high rate of infectious CFS among healthy adults who were unrelated.
  10. Bunchy

    Bunchy New Member

    Jam – I tried OLE a while back and whilst it seemed to help slightly at first it stopped doing anything after a while. I might suggest my sister has a go with it though - thanks. You are probably right about inherited inflammatory diseases manifesting in some form or other though.

    CFSGeorge – I totally agree that studying Gulf War veterans would be very useful for all these related DD’s.

    Pitoune – I’m sorry you and your sister also suffer and that your DH is showing signs of GWS. I’m always convinced GWS is caused by a combination of the vaccines (huge hit to the immune system) and the local bugs that they then get in the areas they work in (causing the immune system overload ultimately).

    Bluebottle – I was part of Prof Puri’s MRI scanning project but I think he ran out of funding as we were then supposed to have blood taken and tested for the genetic research by Dr Kerr as the second part of that particular research trial but it never went ahead. I have tried to get MERGE and the ME Association to help fund him and tried to get him to ask them to help but to no avail. I haven’t heard from him for ages now despite repeated emails to him.

    I’m really worried for my sister – she is not getting better and says she feels almost as bad now as when she first became ill as a result of the vertigo and ongoing chest infection (she doesn’t smoke) and I fear she may be heading for a downward slide :(

    Thanks for the interesting discussion.

    Love Bunchy x
  11. Yogi B

    Yogi B New Member

    Hi Bunchy,

    How are you getting on with Professor Puri's research? You said in you last post he hadn't responded to you for a long time – have you received any response since then? I also was part of his research but haven't received any of the findings or results from this study.

    What is happening with this research study????????????

    Looking fwd to hearing from U !!!!!!!!

  12. Bunchy

    Bunchy New Member

    Wow, I wonder if we were there at the same time!!

    I haven't heard from Prof Puri and after trying MERGE and the ME Association and also telling Prof Puri that they may help with funding, I haven't heard from any of them. To be honest, I've given up as there is only so much I can do :(

    I think he did analyse the results of the neuro-imaging as I read somewhere that he had given a talk about it at some conference in the summer but no, he never contacted me to let me know the results even though I asked him to on numerous occasions.

    I'll try to email him again and if that fails I'll leave a message on his answerphone if he's still around.

    If you google him his email address and tel no come up on one of the websites.

    I hope you have some luck - were you going to get that follow-up bloodwork done as part of Jonathan Kerr's genetic research too?

    Pity it's all gone quiet as I was really excited about that bit - I was 99% sure something would show up on the genetics test!

    Gentle hugs,

    Bunchy x

    PS Where are you in the UK? I'm in Surrey, near London.
    [This Message was Edited on 09/07/2009]
  13. TigerLilea

    TigerLilea Active Member

    Yes, unfortunately CFS and FM can run in families. My S-I-L has FM and it now looks like my 18 year old niece is getting FM after getting an injury at work. I know of a few people with CFS who have a son or a daughter who have later developed it.
  14. deadtired

    deadtired Member

    bunchy, naturally we tend to look at diseases as being inherited, but there are also diseases that can be acquired. The fact that your parents , like mine, do not have this disease makes you wonder if this is acquired. I don't know your age, but I am 56 and I still think the contaminated polio vaccine given to me in 1955-1960 contributed to this disease. The vaccine harbored simian (monkey) retrovirus's (no less than 40, not sure how many). Retroviru's
    target the immune system. Something acquired seems to fit my personal scenario as my husband also has this disease. He had a history or repeated bouts of mono, since childhood. After years of feeling tired and fatique, a mono-like virus in 1988 pushed us into CFS. Our children unfortunately have compromised health, some mildly affected, others more severe. The only relative that I can think of that suffered like us would be my aunt to had rheumatoid arthritis since childhood, and none of her siblings had it. So, there could be some genetic component here. Its just hard to explain why my husband and I are both afflicted when we
    don't have the same genetics, plus his siblings are totally healthy.
  15. Yogi B

    Yogi B New Member

    Hi Bunchy,

    Thanks for responding so quickly. So sorry for taking so long to respond but have had a relapse and been too tired to write back. I know you will understand ;)

    I just wanted to find out what ever happened to the study.

    I thought it was just me – but interested in the fact that other people don't have the results of the scans back either. That's a real shame as people are desperate to find out what comes up in these scans.

    I just wish he would share the results with the 52 volunteers that helped on his study.

    In response to your question – yes i think there was some blood tests involved but he didn't come back to me with testing my blood either.

    Thanks for trying to get MEA and MERGE to help with these studies – I just wish I had the energy to do help out in this way as well.

    I am going to see if luminescentfeeling (who also participated in the study) whether he has received any response from Prof Puri. !!

    Cheers for your help !!!! - Keep in touch if your hear anything from the Prof Puri.


    Yogi B
  16. nah.stacey

    nah.stacey Member

    I am absolutely sure this thing is hereditary.

    My Father has it, but of course back in the day they didn't have a name for it. My mother wasn't too kind about it and thought he was just lazy and making up the fact that he was always sick or didn't feel well enough to go all the places she wanted to go and do. I now realize why he had a little work place in a shed and would go and "hide" in there to get away from it all.
    The sensory overload had to have been pretty bad. I recently spent a week with my mother and she nearly killed me. She would have made a terrible nurse. "Get up" "Lets go" Wake up (at 7:00 am.). Needless to say she divorced my father after 14 yrs of marriage and can only say that as sad as it was he had to be relieved.

    My brother has it and it destroyed his marriage (both of them) and his career.

    My second son has it and luckily he has a night job, but it is still killing him.

    And of course then there's me. I've been sick forever but was truly taken down after an emergency hysterectomy (uterus attached to intestines by adhesions incredible pain). Life has never been the same.

    Yes I truly believe it's hereditary.
  17. Bunchy

    Bunchy New Member

    Still haven't heard anything from Prof Puri - I haven't had the time or energy to try to chase him up again yet.

    I will try again soon and leave a message on his voicemail this time.


    Bunchy x
  18. Bunchy

    Bunchy New Member

    I believe there is a genetic component to this illness definitely and that it can also be hereditary. I believe there are genetic defects in those of us who develop these illnesses.
    I hope research can prove this eventually.

    My sister has mild ME/CFS after contracting EBV several years ago - she is nowhere near as badly affected as me but can only work part time and cannot exercise.

    Hugs to you and sorry for what your family has been through with these DD's.

    Love Bunchy x

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