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Secretlonghauler 💙 Profile picture
@Secretlonghaul1
Sep 3, 2020 • 3 tweets • 2 min read • Read on X
1/2 after listening to the first part of the #bmjcovid webinar today then taking part in a focus group with the team working with @trishgreenhalgh on GP interaction with #LongCovid I feel motivated through my exhaustion and brain fog to do more eg setting up a local support group
2/2 anyone else done similar and any tips? Not to replace Facebook/Twitter support, more about local access to services, advocacy etc?
@KateCushing2 I live in the NE too so would be grateful for any tips?!

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More from @Secretlonghaul1

Secretlonghauler 💙 Profile picture
Sep 10, 2020
#LongCovid community. Where am I going wrong? I’m off work (other than doing a small amount of “essential” and thought I was pacing but now having another relapse. This is my diary

Monday
No work
Pilates 1 hour
2,964 steps
Slept 3 hours in the afternoon
9 hours sleep
Tuesday
1.5 hours of work
Swimming 30 minutes
4,088 steps
Slept 1.5 hours
Rested on bed for further 2 hours
Muscle aches, chest pain and heart palpitations
9 hours sleep

Wednesday
1 hour of work
Felt OK
Went for a walk 10,602 steps
Swimming 12 minutes
Went to bed for 10 hours
Thursday
2 hours of work
Exhausted, headache and muscle aches
Bed all afternoon
997 steps
Read 4 tweets
Secretlonghauler 💙 Profile picture
Aug 29, 2020
1/3 #Longcovid #COVID #covidlonghauler
Things I wish Doctors would say to me:
I’m sorry you are feeling like this.
I’m going to explain why I think you are experiencing each symptom and if we don’t yet know why I’ll say that too.
2/3 I’m going to help you consider the treatment available for each symptom where I can
I want to keep track of your recovery so will see you again in xx weeks
I’m going to be researching the latest science and treatments to help you and my other Long Covid patients
3/3
We are here to support and help you, you aren’t alone
How is this impacting on your day to day life? What might help?
I’m going to keep your test results under review as I may want to do further tests in the future as we learn more.
Read 4 tweets

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