1. Guest, the 'News in Brief' for the week beginning 30th January 2023 is here.
    Dismiss Notice
  2. Welcome! To read the Core Purpose and Values of our forum, click here.
    Dismiss Notice

Royal College of Physicians article: "Do you really believe in ME?" by Dr Nina Muirhead

Discussion in 'General ME/CFS news' started by Andy, Apr 10, 2019.

  1. Andy

    Andy Committee Member

    Messages:
    18,698
    Location:
    Hampshire, UK
    https://www.rcplondon.ac.uk/news/do-you-really-believe-me
     
    Keebird, ahimsa, TiredSam and 49 others like this.
  2. inox

    inox Senior Member (Voting Rights)

    Messages:
    520
    Location:
    Norway
    Thank you so much, Dr. Nina Muirhead - not many doctors are open about having ME, even less also share their experience. We know the stigma you face, thank you <3

    Just like to highlight this part, it's such a strong statement:

     
    Keebird, Dechi, ladycatlover and 25 others like this.
  3. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    11,851
    Location:
    London, UK
    Nice one.
     
    Simone, Hutan, JaneL and 13 others like this.
  4. MeSci

    MeSci Senior Member (Voting Rights)

    Messages:
    3,841
    Location:
    Cornwall, UK
    What do you think of this statement:

    "The reality is ME/CFS is a serious, heritable, neurological condition and I was shocked to discover subsequently that my grandmother had died from it aged 42."

    I had not heard of it being heritable. I wonder whether it was on her grandmother's death certificate.
     
    DigitalDrifter, Dechi, shak8 and 10 others like this.
  5. Barry

    Barry Senior Member (Voting Rights)

    Messages:
    8,294
    It does seem to run in families, as people here will testify, but of course that does not necessarily mean it is inherited. I hope it isn't.
     
    shak8, ladycatlover, Simone and 6 others like this.
  6. strategist

    strategist Senior Member (Voting Rights)

    Messages:
    4,618
    Speaking of deconditioning. In the last few months I've experimented and intentionally changed my time spent upright patterns. It seems that avoiding sitting and walking for a week is noticable in some bad ways too. It felt like there was a new feeling of lazy tiredness. Is this the terrible deconditioning I heard about? If so, how can anyone think this could be confused with an illness?
     
    Sbag, ladycatlover, JaneL and 5 others like this.
  7. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    11,851
    Location:
    London, UK
    There was a recent report from a very large epidemiological study in the US suggesting that there was a significant genetic component, even if we so far cannot identify specific genes for sure.

    We all carry risk genes for some chronic illness or other and they get resorted by generation so I am not sure genetic factors are any more worrying than ubiquitous environmental factors that may be harder to shake off! Epstein Barr virus shows no sign of being got rid of for instance.
     
  8. Wonko

    Wonko Senior Member (Voting Rights)

    Messages:
    6,374
    Location:
    UK
    Many, many things have a genetic component - being trampled by elephants has several genes involved that determine the risk.

    Genes that determine things like whether or not you're a shark for example ;)

    Then there are environmental factors - living in Manchester decreases the risk of being trampled by elephants considerably.

    A shark living in Manchester....
     
  9. strategist

    strategist Senior Member (Voting Rights)

    Messages:
    4,618
    At least some of the ME/CFS forms are heritable. This is fairly obvious from the many reports of families where more than one person has it. There are even more families where one person has full blown ME/CFS and at least another person has some vague fatigueing illness nobody can diagnose. Presumably that is ME/CFS so mild that it cannot be diagnosed without more accurate tools which we don't have at the moment. Both anecdotal reports and studies have found this.
     
  10. Barry

    Barry Senior Member (Voting Rights)

    Messages:
    8,294
    The UK is infested with sharks, believe me ...
     
  11. Barry

    Barry Senior Member (Voting Rights)

    Messages:
    8,294
    Actually I don't think it is that obvious. Just because people in the same family have the same condition, does not necessarily mean the medical condition itself has been inherited. It could be that some trait has been inherited, which then causes people to share something common to the way they live, their environment, whatever, that might put them at higher risk. As per @Wonko's example of being trampled by elephants. I don't think there is enough proof either way yet.
     
  12. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    11,851
    Location:
    London, UK
    There is a fibreglass one diving in to the roof of a house close to the psychiatric hospital near Headington in Oxford -look it up on the internet.
     
  13. Suffolkres

    Suffolkres Senior Member (Voting Rights)

    Messages:
    1,391
    It has repeatedly said that many with ME are 'atopic', have allergies and intolerances. I think the figure was about 60%. It applies in my family, husband/son.
     
  14. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    11,032
    Location:
    UK West Midlands
    Nice one. I shared it to local Facebook support group and also to my own small collection of Facebook friends. Some of whom are relatives very old friends and the rest former colleagues and a couple of ME folks I have acquired.

    I don’t share much ME stuff generally a handful across the year. It needs to be by a credible person in a credible publication and not too niche or lengthy to make it easy for non-ME person to get their head around. This one is the first one any of my friends has ever shared to their friends. One of my old friends did that and commented about how she’s seen the impact on me. I’m touched.
     
  15. Barry

    Barry Senior Member (Voting Rights)

    Messages:
    8,294
    :D:D:D

    upload_2019-4-10_20-43-24.png

    A night out on the tiles that went wrong maybe.
     
  16. Barry

    Barry Senior Member (Voting Rights)

    Messages:
    8,294
    My wife would fit that.
     
    ladycatlover, Simone and MEMarge like this.
  17. Wonko

    Wonko Senior Member (Voting Rights)

    Messages:
    6,374
    Location:
    UK
    But is it any danger of being trampled by elephants? My argument stands ;)
     
  18. CFS_for_19_years

    CFS_for_19_years Established Member (Voting Rights)

    Messages:
    73
    Location:
    USA
    Were you thinking of this one?
    Mitochondrial DNA variants correlate with symptoms in myalgic encephalomyelitis/chronic fatigue syndrome
    (2016) Maureen Hanson et al, Cornell University
    https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-016-0771-6

    According to 23andme I have mitochondrial (maternal) haplogroup H. In the above study this is associated with "feeling dead" after exercise.
     
    Last edited: Apr 10, 2019
    Simone, JaneL, Barry and 1 other person like this.
  19. Amw66

    Amw66 Senior Member (Voting Rights)

    Messages:
    5,495
    Beautiful day' s book explored haplotype gene associations. Interesting stuff ( my aunt is a J)
     
  20. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    11,851
    Location:
    London, UK
    Only when it gets in the room.
     

Share This Page