1. Guest, the 'News in Brief' for the week beginning 21st September 2020 is here.
    Dismiss Notice
  2. Welcome! To read the Core Purpose and Values of our forum, click here.
    Dismiss Notice

Covid-19 in ME-patients

Discussion in 'Epidemics (including Covid-19)' started by Kalliope, Mar 22, 2020.

  1. Kalliope

    Kalliope Senior Member (Voting Rights)

    Messages:
    3,345
    Likes Received:
    33,739
    Location:
    Norway
    Thought it could be useful with a thread on stories of ME-patients with Covid-19.

    The newspaper VG has an article about one of the youngest patients that has been hospitalised so far in Norway with Covid-19. She is also diagnosed with ME.
    She was at the hospital for a sinus operation, but deteriorated when she came home and developed sepsis. Back at the hospital she tested positive for Covid-19.
    She says the sepsis was much more worrying for her than the virus infection. She felt very well taken care of. The sepsis is now gone and she was dismissed from hospital on Friday and is now in isolation at home.

    VG: Marielle (28) var innlagt med coronavirus: - Tungt å puste
    google translation: Marielle (28) was hospitalised with corona virus: - Difficult to breathe
     
    inox, Lidia, Anna H and 34 others like this.
  2. Dolphin

    Dolphin Senior Member (Voting Rights)

    Messages:
    2,510
    Likes Received:
    13,163
    I presume rather than "printed" this means she was diagnosed on Friday??
     
    Last edited: Mar 22, 2020
    hinterland, Caesar and Kalliope like this.
  3. Kalliope

    Kalliope Senior Member (Voting Rights)

    Messages:
    3,345
    Likes Received:
    33,739
    Location:
    Norway
    She was dismissed from hospital on Friday. It's called being "written out", and yes, one can say the same thing about printing. Never thought about that before :laugh:
     
    ladycatlover, inox, Anna H and 10 others like this.
  4. Kalliope

    Kalliope Senior Member (Voting Rights)

    Messages:
    3,345
    Likes Received:
    33,739
    Location:
    Norway
  5. It's M.E. Linda

    It's M.E. Linda Senior Member (Voting Rights)

    Messages:
    499
    Likes Received:
    3,821
    Update on Sally (Foggy Dog)

    She has also followed up with a couple of quick films (to save typing) with her symptoms, so you can read the updates on the twitter feed



    Edited to remove personal identifier.
     
    ukxmrv, MEMarge, JaneL and 5 others like this.
  6. JemPD

    JemPD Senior Member (Voting Rights)

    Messages:
    1,430
    Likes Received:
    11,764
    And how is one supposed to get to hospital?
     
  7. Mithriel

    Mithriel Senior Member (Voting Rights)

    Messages:
    1,394
    Likes Received:
    11,219
    I believe you phone the NHS 24 or 111 and they will send out paramedics who will arrange for you to be taken to hospital if you need it.
     
  8. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    5,119
    Likes Received:
    42,421
    Location:
    UK
  9. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    5,119
    Likes Received:
    42,421
    Location:
    UK
    @JohnTheJack
    Hope you are doing OK. do you have everything you need? take care.
     
  10. JohnTheJack

    JohnTheJack Moderator Staff Member

    Messages:
    3,401
    Likes Received:
    15,911
    Thanks, SS. I had (not tested) Covid-19 but mildly. It has left me very tired, but am improving and this week have been out to the shops. Once I feel stronger, I'll post at greater length on my symptoms and experience.
     
    Rosie, Anna H, ukxmrv and 21 others like this.
  11. RuthT

    RuthT Senior Member (Voting Rights)

    Messages:
    190
    Likes Received:
    1,484
    I have mild symptoms: cough, mild respiratory issues, chills/shivers, no temperature. Currently on Day 7. Resting quite a lot.

    Had been feeling rough with poor HRV stats for a week, so already self-isolating. I went to the NHS Coronavirus online help and it said likely Coronavirus. Hoping am nearly through whether that or some other viral ilness. I did have a sense of construction around the ribs, but it passed.
     
    Rosie, Yessica, MSEsperanza and 17 others like this.
  12. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    5,119
    Likes Received:
    42,421
    Location:
    UK
    ‘Seabiscuit’ author Laura Hillenbrand on coronavirus symptoms: It felt ‘like I was breathing through gauze’
    article and podcast with transcript of some of the interview
    https://www.oregonlive.com/coronavi...-felt-like-i-was-breathing-through-gauze.html

    Further discussion of Laura Hillenbrand (the interview, her Covid-19 experience and her ME/CFS) is here:
    Laura Hillenbrand 2020 —Her MECFS has improved and she has Covid-19
     
    Last edited by a moderator: Apr 12, 2020
  13. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    5,119
    Likes Received:
    42,421
    Location:
    UK
    This post as been moved from this thread.


    maybe this is the year that ME Awareness week might actually be able to make an impact?
     
    Last edited by a moderator: Apr 13, 2020
    MEMarge, JaneL, Yessica and 6 others like this.
  14. ahimsa

    ahimsa Senior Member (Voting Rights)

    Messages:
    1,173
    Likes Received:
    8,828
    Location:
    Oregon, USA
    Here's a news article about a woman with fibromyalgia and chronic fatigue syndrome who got a bad case of COVID-19.

    ‘I’m Begging People To Listen’: Newton COVID-19 Survivor Shares Story

    https://boston.cbslocal.com/2020/04/22/coronavirus-survivor-newton-woman-shares-story-coma/

    Weirdly, the video says she has "fibromyalgia, but is otherwise healthy." The text of the article says she has "fibromyalgia and chronic fatigue syndrome, but is otherwise healthy."

    Ignoring the weird "otherwise healthy" comment (folks REALLY think these illnesses are no big deal, right?) I don't know whether this contradiction is an omission in the video or a mistake in the text.
     
    Last edited by a moderator: Apr 29, 2020
  15. Justy

    Justy Senior Member (Voting Rights)

    Messages:
    193
    Likes Received:
    1,930
    Hi everyone, not sure if anyone remembers me. I've not been around for two years now. I still have M.E and i'm currently still recovering from a (highly suspected) covid infection. I've been very ill but stayed out of hospital. Im now on day 44 and still having relapses of symptoms and it has stirred up some old M.E symptoms. I've been having to use the wheelchair in the house again a bit - at first i was bedbound and couldnt even tolerate being in the wheelchair. Thats not normal for me. I had severe light and sound sensitivity so that for the first ten days all i could do was lay in bed and stare at the wall or out of the bottom half of the window with the blinds down a fair way.
    I have spoken to lots of non M.E covid patients from UK and US who are experiencing a very prolonged covid recovery - they all think they might have pvs - which is ironic for me because i already have M.E!

    GP was not that helpful - just told if you cant breathe call an ambulance. I DIDNT have a fever because my body doesnt do that and so NHS 111 said i couldnt have covid. I had all the other symptoms. My husband also had it and my daughter had it but very mildly. I have no idea how long it is going to take to recover, but its similar to M.E - any increase in activity causes the symptoms to come back - including coughing and shortness of breath and chills even if they had been gone for a week or more. My husband and others are also experiencing this cycling of symptoms and relapses.

    I am absolutely horrified that despite having dx of:
    ME, Mast cell activation disease (only 10 foods for three years and no know safe medications), EDS, mitral valave prolapse, asthma, lung fibrosis (from repeated pneumonias) and housebound wheelchair user for ten years i am not classed as 'vulnerable' enough to get on the govt list or get access to delivery slots from supermarkets. My husband and daughter had been shielding with me and before we knew we had it even my PA refused to go shopping for me in case she caught it at the shops.

    Anyway, thats my rant and basic experience. Nice to pop in and say hi - ive missed people here. Just to say i had been working with DNRS for two years and had a lot of improvements - not cured by any means but improved from being bedbound and unable to stand up and waiting to die to able to walk a little outside, volunteer for a charity from home part time including running a team of people, stand up for prolonged periods and do gardening etc again. Still housebound, but much improved QOL. sadly most of that lost now due to coronavirus and might take me a couple more years to get back to where i was.
     
    MeSci, Yessica, Marky and 29 others like this.
  16. Wonko

    Wonko Senior Member (Voting Rights)

    Messages:
    4,026
    Likes Received:
    29,779
    Location:
    UK
    Yessica, Simbindi, Rosie and 7 others like this.
  17. Justy

    Justy Senior Member (Voting Rights)

    Messages:
    193
    Likes Received:
    1,930
    Hey :) thanks for the welcome! if im to get back to DNRS then i may have to duck out again soon - just felt the need for my ME buddies during this WEIRD time :emoji_mask:
     
    merylg, MeSci, Yessica and 13 others like this.
  18. Trish

    Trish Moderator Staff Member

    Messages:
    25,901
    Likes Received:
    126,976
    Location:
    UK
    Welcome back, @Justy. Good to hear you had some improvement, but so sorry it's all gone backwards with Covid. I hope it won't go on for so long.
     
    merylg, Yessica, Simbindi and 8 others like this.
  19. Justy

    Justy Senior Member (Voting Rights)

    Messages:
    193
    Likes Received:
    1,930
    Thanks Trish :) Good to see you !
     
    merylg, JaneL, Simbindi and 5 others like this.
  20. TiredSam

    TiredSam Moderator Staff Member

    Messages:
    8,306
    Likes Received:
    40,057
    Location:
    Germany
    Nice to see you again @Justy. I never forget a good pun, and your "knight in shining Omar" was a classic.
     
    merylg, Yessica, rainy and 8 others like this.

Share This Page