Long Covid research and support group.

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This is a good idea. I would love to know those who got covid in the first round,( for want of a better word) what treatment they had if they don't mind sharing.
 
Thanks for creating.

Hopefully we can all agree two fundamental guidelines:

  1. Talk about long covid (LC) not being real - ie being caused by hypochondria etc isn’t welcome - as this is meant to be for support, not debate about its existence.
  2. Debate about vaccines isn’t welcome either as there’s obviously already a thread for that.

With that out of the way, I’ll be interested to keep up to date with this. I don’t have LC myself, but do have a close family friend with it who’s progressing fairly well from where he was. But he still struggles to do much physically. It’s hard to know if he’s as well as he ever will be, or if he can still improve.
 
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Ensay said:
Thanks for creating.

Hopefully we can all agree two fundamental guidelines:

  1. Talk about long covid (LC) not being real - ie being caused by hypochondria etc isn’t welcome - as this is meant to be for support, not debate about its existence.
  2. Debate about vaccines isn’t welcome either as there’s obviously already a thread for that.

With that out of the way, I’ll be interested to keep up to date with this. I don’t have LC myself, but do have a close family friend with it who’s progressing fairly well from where he was. But he still struggles to do much physically. It’s hard to know if he’s as well as he ever will be, or if he can still improve.
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Your post comes across as one trying to moderate? First part I 100% agree with. but the 2nd I don't agree at all due to many people getting covid right after vaccination and so you cannot tell if its a vaccine injury or indeed LC.


In rare cases, coronavirus vaccines may cause Long Covid–like symptoms


Science | AAAS

www.science.org www.science.org




I agree this should not be a vaccine thread but the topic of vaccines will have a place here, surely?

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Notworthy said:
A young brit Tennis player retired this week due to Long Covid 🎃👻spookily underrated 🍂🐈‍⬛ on Twitter: "GB player Tanysha Dissanayake announces her retirement from tennis at age 21 due to long covid 😔💔 https://tattle.life/threads/19920/" / Twitter
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Very sad. it must be so hard to have everything and then lose it in that way. I really hope she recovers enough to have a good and productive life
 
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Sorry, I wasn't trying to moderate, I could just see both those things as being common thread derailers - which we surely all want to avoid.

But, rather than debating among ourselves, @Moderator - can you please give a view on if the guidelines in post 3 are acceptable?
 
I have had long covid for over 18 months. I am MILES better than I was when first unwell (spent 3 months completely bed bound) and I have tried hypnotherapy, CBT, acupuncture, SSRIs, changing my diet and I have had x rays, bloods, eye tests, hearing tests and an MRI.
All of that to say, the only thing they can find evidence of is that I am deficient in iron. Long covid really did a number on me and at only 29 with no previous health problems, being of normal weight and fitness, it was a shock.
 
gardengnome2 said:
I have had long covid for over 18 months. I am MILES better than I was when first unwell (spent 3 months completely bed bound) and I have tried hypnotherapy, CBT, acupuncture, SSRIs, changing my diet and I have had x rays, bloods, eye tests, hearing tests and an MRI.
All of that to say, the only thing they can find evidence of is that I am deficient in iron. Long covid really did a number on me and at only 29 with no previous health problems, being of normal weight and fitness, it was a shock.
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I do think some of the parameters for vitamins and minerals are not particularly evidence based. Different countries seem to have different parameters which I find odd. There are also plenty of things the NHS doesn't test that we need. Things like Manganese, iodine etc. The tests for thyroid can be useless too, my sisters kept coming out as normal but eventually she was diagnosed with Hashimotos
 
I have posted about this before on other threads but I have a friend who has been severely unwell with long covid since around May/June last year. She has suffered from severe fatigue, heart issues, liver issues. She lost a lot of her cognitive function and had to relearn how to read and write. She lives in a top floor flat and for most of the last year she has been unable to leave it. She's in her early 30s, probably wasn't in the greatest of health (overweight, had treatment for early stage cervical cancer in her 20s), so potentially would have been classed as more vulnerable to covid. It's been heartbreaking to watch her go through it but thankfully in the last few months she is really starting to make improvements and is looking to return to work in the new year - although she isn't sure if she'll be able to do her old job in the same way she could before. She has to use a stick to walk, and can only walk about five minutes at a time before she needs to rest. She got married just before the pandemic hit so basically the whole first two years of their marriage has been lockdown or long covid. It's really affected her whole life (and her husbands) but she has been able to be involved in a number of research studies and pilot programmes so hopefully her experience will have some positives in helping understand long covid.

I also had some mild long-covid which was mainly fatigue and an ongoing eye-twitch which took around five months to shift. I still feel the fatigue but it is nowhere near as bad as it was, and nowhere near as bad as my poor friend has experienced it.

gardengnome2 said:
I have had long covid for over 18 months. I am MILES better than I was when first unwell (spent 3 months completely bed bound) and I have tried hypnotherapy, CBT, acupuncture, SSRIs, changing my diet and I have had x rays, bloods, eye tests, hearing tests and an MRI.
All of that to say, the only thing they can find evidence of is that I am deficient in iron. Long covid really did a number on me and at only 29 with no previous health problems, being of normal weight and fitness, it was a shock.
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Glad you are feeling better now gardengnome2. I hope you continue to improve.
 
gardengnome2 said:
I have had long covid for over 18 months. I am MILES better than I was when first unwell (spent 3 months completely bed bound) and I have tried hypnotherapy, CBT, acupuncture, SSRIs, changing my diet and I have had x rays, bloods, eye tests, hearing tests and an MRI.
All of that to say, the only thing they can find evidence of is that I am deficient in iron. Long covid really did a number on me and at only 29 with no previous health problems, being of normal weight and fitness, it was a shock.
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I'm so glad you are feeling a bit better and so sorry that you've been going through this for so long. It's quite unnerving to go from being very healthy, fit young etc. to bed bound and super unwell. I was 25 when I got covid and subsequently long covid and it really has been hell. Luckily I've made improvement the last month but there's no obvious reason for it! I finally managed to get an MRI on my heart which showed heart inflammation which is still active so I'm about to have treatment for that, as well as high ACNH (might have remembered that wrong) and low cortisol. Other than that everything has been "normal" and none of my other symptoms have been explained. Looks like there are a number of trials starting to take place though which seems promising!

kazizzle said:
I have posted about this before on other threads but I have a friend who has been severely unwell with long covid since around May/June last year. She has suffered from severe fatigue, heart issues, liver issues. She lost a lot of her cognitive function and had to relearn how to read and write. She lives in a top floor flat and for most of the last year she has been unable to leave it. She's in her early 30s, probably wasn't in the greatest of health (overweight, had treatment for early stage cervical cancer in her 20s), so potentially would have been classed as more vulnerable to covid. It's been heartbreaking to watch her go through it but thankfully in the last few months she is really starting to make improvements and is looking to return to work in the new year - although she isn't sure if she'll be able to do her old job in the same way she could before. She has to use a stick to walk, and can only walk about five minutes at a time before she needs to rest. She got married just before the pandemic hit so basically the whole first two years of their marriage has been lockdown or long covid. It's really affected her whole life (and her husbands) but she has been able to be involved in a number of research studies and pilot programmes so hopefully her experience will have some positives in helping understand long covid.

I also had some mild long-covid which was mainly fatigue and an ongoing eye-twitch which took around five months to shift. I still feel the fatigue but it is nowhere near as bad as it was, and nowhere near as bad as my poor friend has experienced it.


Glad you are feeling better now gardengnome2. I hope you continue to improve.
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Sending love to your friend, that sounds like she has had such a horrible time. I'm sorry you've had unpleasant long lasting symptoms too, the fatigue is hard to manage x
 
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