Lisa Lewis
@lisalewiswilts.bsky.social
Trustee. Freelance Charity Consultant. Ex Charity CEO. Neurospicy. Currently on a Long Covid recovery journey. #LongCovid #MCAS
January 1, 2025 at 7:14 PM
Reposted by Lisa Lewis
Just to bust this myth: PEM is *not* just disproportionate fatigue. This is a huge misconception. PEM/PENE is a systemic, whole body response to over exertion, that involves inflammation, muscle damage, neuroinflammation, immune activation and metabolic dysfunction. It’s never just fatigue #MEcfs
December 9, 2024 at 2:45 PM
Just to bust this myth: PEM is *not* just disproportionate fatigue. This is a huge misconception. PEM/PENE is a systemic, whole body response to over exertion, that involves inflammation, muscle damage, neuroinflammation, immune activation and metabolic dysfunction. It’s never just fatigue #MEcfs
An observation that only someone with chronic fatigue will understand:-
That internal debate monologue in the shower as to whether or not it is worth using an extra pace point / spoon by shaving armpits and legs 🤣 🪒 #LongCovid
That internal debate monologue in the shower as to whether or not it is worth using an extra pace point / spoon by shaving armpits and legs 🤣 🪒 #LongCovid
November 21, 2024 at 12:26 PM
An observation that only someone with chronic fatigue will understand:-
That internal debate monologue in the shower as to whether or not it is worth using an extra pace point / spoon by shaving armpits and legs 🤣 🪒 #LongCovid
That internal debate monologue in the shower as to whether or not it is worth using an extra pace point / spoon by shaving armpits and legs 🤣 🪒 #LongCovid
My constant companion - he’s with me 24/7 and he doesn’t care if I haven’t showered in a week 🥰
#LongCovid
#LongCovid
November 21, 2024 at 10:34 AM
My constant companion - he’s with me 24/7 and he doesn’t care if I haven’t showered in a week 🥰
#LongCovid
#LongCovid
I’m not looking for sympathy since this is my choice, but this is the reality of long term chronic fatigue
2/2
2/2
November 20, 2024 at 2:08 PM
I’m not looking for sympathy since this is my choice, but this is the reality of long term chronic fatigue
2/2
2/2
I truly value my trustee role for many reasons including those of self worth, making a contribution to society, and mental health etc but this is the price that I have to pay for the cognitive effort involved…
That’s a third of my daily pace points used up in a two hour online meeting.
1/2
That’s a third of my daily pace points used up in a two hour online meeting.
1/2
November 20, 2024 at 2:07 PM
I truly value my trustee role for many reasons including those of self worth, making a contribution to society, and mental health etc but this is the price that I have to pay for the cognitive effort involved…
That’s a third of my daily pace points used up in a two hour online meeting.
1/2
That’s a third of my daily pace points used up in a two hour online meeting.
1/2
My personal mantra in order to ensure my acceptance of my current situation / condition.
#LongCovid #CFS #myalgicencephalomyelitis #ME
#LongCovid #CFS #myalgicencephalomyelitis #ME
November 20, 2024 at 1:26 PM
My personal mantra in order to ensure my acceptance of my current situation / condition.
#LongCovid #CFS #myalgicencephalomyelitis #ME
#LongCovid #CFS #myalgicencephalomyelitis #ME
My awesome recovery tribe.
Daily classes provide routine, structure and an online connection to the most amazing support community
#LongCovid #LongCovidRecovery #wellbeing
www.360mindbodysoul.co.uk
Daily classes provide routine, structure and an online connection to the most amazing support community
#LongCovid #LongCovidRecovery #wellbeing
www.360mindbodysoul.co.uk
360MindBodySoul
360 Mind Body Soul are a collective of highly experienced wellbeing instructors offering live and online yoga, pilates, mindfulness and personal training exercise classes throughout the week on our ea...
www.360mindbodysoul.co.uk
November 19, 2024 at 8:17 PM
My awesome recovery tribe.
Daily classes provide routine, structure and an online connection to the most amazing support community
#LongCovid #LongCovidRecovery #wellbeing
www.360mindbodysoul.co.uk
Daily classes provide routine, structure and an online connection to the most amazing support community
#LongCovid #LongCovidRecovery #wellbeing
www.360mindbodysoul.co.uk
Having a shower & washing my hair took 21 mins & used up 5.4 of my total 27 daily pace points.
That’s 20% of my daily total in 21 mins . Which means I’m basically f*cked for the rest of the day since I haven’t even made it downstairs yet
This is what life with Long Covid / CFS / ME looks like…
That’s 20% of my daily total in 21 mins . Which means I’m basically f*cked for the rest of the day since I haven’t even made it downstairs yet
This is what life with Long Covid / CFS / ME looks like…
November 19, 2024 at 5:24 PM
Having a shower & washing my hair took 21 mins & used up 5.4 of my total 27 daily pace points.
That’s 20% of my daily total in 21 mins . Which means I’m basically f*cked for the rest of the day since I haven’t even made it downstairs yet
This is what life with Long Covid / CFS / ME looks like…
That’s 20% of my daily total in 21 mins . Which means I’m basically f*cked for the rest of the day since I haven’t even made it downstairs yet
This is what life with Long Covid / CFS / ME looks like…
Reposted by Lisa Lewis
Incredible stuff from @jacobcolliermp.bsky.social!
Thanks for standing up so powerfully for your constituent and all those whose lives have been fundamentally changed by ME/Long Covid 🫡
#ThereForME
Thanks for standing up so powerfully for your constituent and all those whose lives have been fundamentally changed by ME/Long Covid 🫡
#ThereForME
November 19, 2024 at 1:16 PM
Incredible stuff from @jacobcolliermp.bsky.social!
Thanks for standing up so powerfully for your constituent and all those whose lives have been fundamentally changed by ME/Long Covid 🫡
#ThereForME
Thanks for standing up so powerfully for your constituent and all those whose lives have been fundamentally changed by ME/Long Covid 🫡
#ThereForME
I’ve realised that it’s now time to find an alternative word for the chronically debilitating exhaustion experienced with #LongCovid
The word “fatigue” just doesn’t work for me anymore.
There isn’t currently an alternative available, so I’m opening up a debate on inventing a new term…
The word “fatigue” just doesn’t work for me anymore.
There isn’t currently an alternative available, so I’m opening up a debate on inventing a new term…
November 19, 2024 at 1:10 PM
I’ve realised that it’s now time to find an alternative word for the chronically debilitating exhaustion experienced with #LongCovid
The word “fatigue” just doesn’t work for me anymore.
There isn’t currently an alternative available, so I’m opening up a debate on inventing a new term…
The word “fatigue” just doesn’t work for me anymore.
There isn’t currently an alternative available, so I’m opening up a debate on inventing a new term…
Reaearch paper on exercise in ME/CFS:
Sedentary people took an average of 2 days to recover, whereas people with ME took an average of 2 weeks.
One person with ME never recovered, even after a year.
#PEM #postexertionalmalaise #ME #CFS #LongCovid
www.mdpi.com/1648-9144/59...
Sedentary people took an average of 2 days to recover, whereas people with ME took an average of 2 weeks.
One person with ME never recovered, even after a year.
#PEM #postexertionalmalaise #ME #CFS #LongCovid
www.mdpi.com/1648-9144/59...
Recovery from Exercise in Persons with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)
Background and Objectives: Post-exertional malaise (PEM) is the hallmark of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), but there has been little effort to quantitate the duration of ...
www.mdpi.com
November 19, 2024 at 12:45 PM
Reaearch paper on exercise in ME/CFS:
Sedentary people took an average of 2 days to recover, whereas people with ME took an average of 2 weeks.
One person with ME never recovered, even after a year.
#PEM #postexertionalmalaise #ME #CFS #LongCovid
www.mdpi.com/1648-9144/59...
Sedentary people took an average of 2 days to recover, whereas people with ME took an average of 2 weeks.
One person with ME never recovered, even after a year.
#PEM #postexertionalmalaise #ME #CFS #LongCovid
www.mdpi.com/1648-9144/59...
November 19, 2024 at 10:57 AM