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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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POLL: ME/CFS patients who caught COVID: did this make your pre-existing ME/CFS permanently worse, or did you recover from COVID without issue?

If you already had ME/CFS and then caught COVID, what was the outcome?

  • COVID did not worsen my ME/CFS in the long-term

    Votes: 6 20.0%
  • COVID made me feel run down for some weeks, but did not worsen my ME/CFS long-term

    Votes: 9 30.0%
  • COVID did not worsen my ME/CFS, but triggered some other long-term health issues

    Votes: 2 6.7%
  • COVID permanently worsened my ME/CFS, moving me down a quarter level on the ME/CFS scale

    Votes: 2 6.7%
  • COVID permanently worsened my ME/CFS, moving me down a half level on the ME/CFS scale

    Votes: 3 10.0%
  • COVID permanently worsened my ME/CFS, moving me down 1 level on the ME/CFS scale

    Votes: 2 6.7%
  • COVID permanently worsened my ME/CFS, moving me down 2 or more levels on the ME/CFS scale

    Votes: 3 10.0%
  • After COVID, my ME/CFS seemed to permanently improve

    Votes: 3 10.0%

  • Total voters
    30

godlovesatrier

Senior Member
Messages
2,545
Location
United Kingdom
Hey Hip,

I speak to a few people on Twitter and one lady who had covid was Suzan Jackson. She's had ME for over twenty years. She's the lady who took Inosine and ldn to essentially get her life back. It doesn't give her insomnia like it does me.

Anyway she got covid 5 months ago and had a really horrible time recovering. She basically spent a lot of time exhausted on her sofa unable to do much of anything. But she's been caring for her elderly parents too so that's a factor she can't get away from in between all that.

I spoke to her last. She says she's back to her pre covid state now. But it did take those 5 months. I believe she suffers from herpes based viruses nothing else. She takes valtrex occasionally and did take it for about 2 months after covid to get things back in place.

Oh yes she said the thing that made a bit difference to her was taking corticosteroids for 5 days. She says this reset her immune system and she feels tons better now. Hopefully it lasts!
 

jann1033

Senior Member
Messages
176
Due to basically being home bound I didn’t get Covid until a couple weeks ago( Sept 2022) . I’m pretty much back to where I was before( moderate) . However the first booster shot permanently put me down about 1/2 a level though, not bedridden but lower than I was.