Dee
@deepomove.bsky.social
Life on hold. In my last life I was free. Interested in research & discussion on Long Covid, Long Vax, MECFS, MCAS, POTS, CCI, EDS & all things complex illness, science, nature, psychology.
Reposted by Dee
Can any Blue Sky LC researchers help me out please? Desperately looking to source pre-pandemic covid naive biobanked blood and plasma samples from healthy children aged 8-18 (but predominantly 11-18) to act as historical control for a study? Turning out to be trickier than expected.UK based.Thx! x
November 20, 2024 at 9:23 PM
Can any Blue Sky LC researchers help me out please? Desperately looking to source pre-pandemic covid naive biobanked blood and plasma samples from healthy children aged 8-18 (but predominantly 11-18) to act as historical control for a study? Turning out to be trickier than expected.UK based.Thx! x
Reposted by Dee
Another cause of #dysautonomia that there may be lack of appreciation? Pineal region lesions- outside of Parinaud's syndrome, hydrocephalus, autonomic dysfunction can occur
pubmed.ncbi.nlm.nih.gov/38547628/
pubmed.ncbi.nlm.nih.gov/38547628/
November 20, 2024 at 2:55 AM
Another cause of #dysautonomia that there may be lack of appreciation? Pineal region lesions- outside of Parinaud's syndrome, hydrocephalus, autonomic dysfunction can occur
pubmed.ncbi.nlm.nih.gov/38547628/
pubmed.ncbi.nlm.nih.gov/38547628/
Reposted by Dee
Reposted by Dee
People of #bsky, how many of you have or know somebody with #LongCovid or #ME / #MECFS?
Does that lead you to be more cautious about (re-)infections with #Covid?
Thank you kindly for your answers and/or #Signalboost 💛😊.
#disability #publichealth #medsky
Does that lead you to be more cautious about (re-)infections with #Covid?
Thank you kindly for your answers and/or #Signalboost 💛😊.
#disability #publichealth #medsky
November 20, 2024 at 2:16 PM
People of #bsky, how many of you have or know somebody with #LongCovid or #ME / #MECFS?
Does that lead you to be more cautious about (re-)infections with #Covid?
Thank you kindly for your answers and/or #Signalboost 💛😊.
#disability #publichealth #medsky
Does that lead you to be more cautious about (re-)infections with #Covid?
Thank you kindly for your answers and/or #Signalboost 💛😊.
#disability #publichealth #medsky
Reposted by Dee
I treated POTS and ME/CFS in the before times, and was part of one of the first research teams to identify bioenergetic deficits and dysautonomia in people with ME/CFS. I can say ME/CFS screening always has been an unresolved issue in POTS care. There’s a reason exercise works only ~50% of the time.
Feels like a good time for a thread about all things exercise for people living with infection (and exposure)-associated complex chronic illnesses (IACCs) such as #MECFS, #LongCOVID and chronic #Lyme /tick- and vector-borne illness. Let’s start with a trip down memory lane.
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November 20, 2024 at 2:18 PM
I treated POTS and ME/CFS in the before times, and was part of one of the first research teams to identify bioenergetic deficits and dysautonomia in people with ME/CFS. I can say ME/CFS screening always has been an unresolved issue in POTS care. There’s a reason exercise works only ~50% of the time.
Reposted by Dee
Feels like a good time for a thread about all things exercise for people living with infection (and exposure)-associated complex chronic illnesses (IACCs) such as #MECFS, #LongCOVID and chronic #Lyme /tick- and vector-borne illness. Let’s start with a trip down memory lane.
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1/
November 20, 2024 at 11:27 AM
Feels like a good time for a thread about all things exercise for people living with infection (and exposure)-associated complex chronic illnesses (IACCs) such as #MECFS, #LongCOVID and chronic #Lyme /tick- and vector-borne illness. Let’s start with a trip down memory lane.
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1/
Reposted by Dee
Our mere existence is an act of rebellion.
A rebellion against a society, a medical establishment, which denies our experiences and reality.
A rebellion against a capitalist system which removes value from the lives of those who cannot work through no fault of their own.
#MECFS #MillionsMissing
A rebellion against a society, a medical establishment, which denies our experiences and reality.
A rebellion against a capitalist system which removes value from the lives of those who cannot work through no fault of their own.
#MECFS #MillionsMissing
November 20, 2024 at 7:34 PM
Our mere existence is an act of rebellion.
A rebellion against a society, a medical establishment, which denies our experiences and reality.
A rebellion against a capitalist system which removes value from the lives of those who cannot work through no fault of their own.
#MECFS #MillionsMissing
A rebellion against a society, a medical establishment, which denies our experiences and reality.
A rebellion against a capitalist system which removes value from the lives of those who cannot work through no fault of their own.
#MECFS #MillionsMissing
Reposted by Dee
🌌A bluesky for Bluesky🌌
For some peace for the hurt that people with MECFS & Long Covid receive from pseudo 'allies'
Island Universe, William H Hay,
For some peace for the hurt that people with MECFS & Long Covid receive from pseudo 'allies'
Island Universe, William H Hay,
November 17, 2024 at 7:39 PM
🌌A bluesky for Bluesky🌌
For some peace for the hurt that people with MECFS & Long Covid receive from pseudo 'allies'
Island Universe, William H Hay,
For some peace for the hurt that people with MECFS & Long Covid receive from pseudo 'allies'
Island Universe, William H Hay,
Reposted by Dee
Everyone with PEM/PENE has dysautonomia but not everyone with dysautonomia may have PEM/PENE.
Pass it on.
Pass it on.
November 17, 2024 at 9:55 AM
Everyone with PEM/PENE has dysautonomia but not everyone with dysautonomia may have PEM/PENE.
Pass it on.
Pass it on.
Reposted by Dee
1. Always remember that the institutional resistance to acknowledging Long Covid (and hence treating it properly), and the utter lack of acknowledgement - in the face of solid evidence - of other delayed sequelae of SARS-CoV-2 infection (such as strokes) is rooted in the...
November 17, 2024 at 11:38 AM
1. Always remember that the institutional resistance to acknowledging Long Covid (and hence treating it properly), and the utter lack of acknowledgement - in the face of solid evidence - of other delayed sequelae of SARS-CoV-2 infection (such as strokes) is rooted in the...
Reposted by Dee
We presented a case report recently showing decreased blood flow to the head after exercise during stand testing in a person with ME who also demonstrated PEM/PENE and characteristic decreases in submaximal exercise performance. Kind of makes you think twice about symptom-titration and pacing up.
November 16, 2024 at 9:44 PM
We presented a case report recently showing decreased blood flow to the head after exercise during stand testing in a person with ME who also demonstrated PEM/PENE and characteristic decreases in submaximal exercise performance. Kind of makes you think twice about symptom-titration and pacing up.
Reposted by Dee
Just a gentle reminder that fear of movement doesn’t correlate with cardiopulmonary exercise test results in people with ME/CFS. The cause of exercise/physical activity intolerance in living with PEM/PENE isn’t that they are afraid to move. A 20-year-old study. pubmed.ncbi.nlm.nih.gov/15283620/
Chronic fatigue syndrome: lack of association between pain-related fear of movement and exercise capacity and disability - PubMed
These results indicate a lack of correlation between kinesiophobia and exercise capacity, activity limitations, or participation restrictions, at least in patients with CFS who are experiencing widesp...
pubmed.ncbi.nlm.nih.gov
November 17, 2024 at 1:10 AM
Just a gentle reminder that fear of movement doesn’t correlate with cardiopulmonary exercise test results in people with ME/CFS. The cause of exercise/physical activity intolerance in living with PEM/PENE isn’t that they are afraid to move. A 20-year-old study. pubmed.ncbi.nlm.nih.gov/15283620/
Reposted by Dee
Let’s say this loud and clear:
Exercise is not the goal, recovery is the goal so one can exercise.
Listen to this man - he’s a world leading expert on PEM/PENE
#ME #Longcovid
Exercise is not the goal, recovery is the goal so one can exercise.
Listen to this man - he’s a world leading expert on PEM/PENE
#ME #Longcovid
The thing with clinicians working with patients on “pacing” programs is they may turn into “pacing up” if you’re not disciplined about it. It shouldn’t turn into graded activity by another name. A clear understanding and expectation of the program is required for both the patient and the clinician.
November 16, 2024 at 8:11 PM
Let’s say this loud and clear:
Exercise is not the goal, recovery is the goal so one can exercise.
Listen to this man - he’s a world leading expert on PEM/PENE
#ME #Longcovid
Exercise is not the goal, recovery is the goal so one can exercise.
Listen to this man - he’s a world leading expert on PEM/PENE
#ME #Longcovid
Reposted by Dee
The real challenge is when an acute problem needs early intervention, but experts refuse to act, fearing the risk of an “acute” situation. You’re pushed to the ER, where your condition worsens due to their lack of knowledge. Die or survive more disabled—pick your side. #LongCovid #MECFS
November 16, 2024 at 9:32 PM
The real challenge is when an acute problem needs early intervention, but experts refuse to act, fearing the risk of an “acute” situation. You’re pushed to the ER, where your condition worsens due to their lack of knowledge. Die or survive more disabled—pick your side. #LongCovid #MECFS
Reposted by Dee
Here’s the thing with symptom-titrated exercise in #MECFS, friends:
1. You never get away from the energy robbing nature of this disease
2. Never
3. See #1 and #2
If all your patients miraculously seem to improve in response to your special exercise regimen, they’re probably talking to me instead.
1. You never get away from the energy robbing nature of this disease
2. Never
3. See #1 and #2
If all your patients miraculously seem to improve in response to your special exercise regimen, they’re probably talking to me instead.
November 16, 2024 at 7:03 AM
Here’s the thing with symptom-titrated exercise in #MECFS, friends:
1. You never get away from the energy robbing nature of this disease
2. Never
3. See #1 and #2
If all your patients miraculously seem to improve in response to your special exercise regimen, they’re probably talking to me instead.
1. You never get away from the energy robbing nature of this disease
2. Never
3. See #1 and #2
If all your patients miraculously seem to improve in response to your special exercise regimen, they’re probably talking to me instead.
Reposted by Dee
This is a key point. I've never had to prescribe an exercise program to encourage someone with ME/CFS or ME-subtype of any other condition to do more. It happens naturally as people feel up to it. People generally do not leave meat on the bone relating to their activities compared to their capacity.
November 16, 2024 at 7:56 AM
This is a key point. I've never had to prescribe an exercise program to encourage someone with ME/CFS or ME-subtype of any other condition to do more. It happens naturally as people feel up to it. People generally do not leave meat on the bone relating to their activities compared to their capacity.
Reposted by Dee
Reposted by Dee
What Are Adrenaline Dumps?
Adrenaline dumps, also called surges or rushes, are intense bursts of the hormone adrenaline that flood your system, usually in response to stress or perceived danger. This is a natural fight-or-flight response, where your body prepares to either face a threat or escape.
Adrenaline dumps, also called surges or rushes, are intense bursts of the hormone adrenaline that flood your system, usually in response to stress or perceived danger. This is a natural fight-or-flight response, where your body prepares to either face a threat or escape.
November 14, 2024 at 2:28 PM
What Are Adrenaline Dumps?
Adrenaline dumps, also called surges or rushes, are intense bursts of the hormone adrenaline that flood your system, usually in response to stress or perceived danger. This is a natural fight-or-flight response, where your body prepares to either face a threat or escape.
Adrenaline dumps, also called surges or rushes, are intense bursts of the hormone adrenaline that flood your system, usually in response to stress or perceived danger. This is a natural fight-or-flight response, where your body prepares to either face a threat or escape.
Reposted by Dee
A list of 600+ people, some of which may be familiar (look in the “About” tab for the list, otherwise you just see all of their posts):
bsky.app/profile/did:...
bsky.app/profile/did:...
October 17, 2024 at 8:55 PM
A list of 600+ people, some of which may be familiar (look in the “About” tab for the list, otherwise you just see all of their posts):
bsky.app/profile/did:...
bsky.app/profile/did:...
Reposted by Dee
I finally found a chart I'd been looking for in prep for @johnvsjonvsme.bsky.social Scary Science!
'Replicated Findings in ME/CFS and Long Covid' by German Association for #MECFS. Reduced cerebral blood flow seen in '92, autoantibodies '03, hypometabolism of CNS '98, etc. #GreatestMEdicalScandal
'Replicated Findings in ME/CFS and Long Covid' by German Association for #MECFS. Reduced cerebral blood flow seen in '92, autoantibodies '03, hypometabolism of CNS '98, etc. #GreatestMEdicalScandal
November 15, 2024 at 1:53 AM
I finally found a chart I'd been looking for in prep for @johnvsjonvsme.bsky.social Scary Science!
'Replicated Findings in ME/CFS and Long Covid' by German Association for #MECFS. Reduced cerebral blood flow seen in '92, autoantibodies '03, hypometabolism of CNS '98, etc. #GreatestMEdicalScandal
'Replicated Findings in ME/CFS and Long Covid' by German Association for #MECFS. Reduced cerebral blood flow seen in '92, autoantibodies '03, hypometabolism of CNS '98, etc. #GreatestMEdicalScandal
Reposted by Dee
Discover the ins & outs of navigating the vibrant community of Bluesky. From accessibility to finding your tribe. This guide has you covered.
🧵adapted to an article so it can be easily shared with individuals & across platforms.
⏳5 min read
www.longcovidadvoc.com/post/navigat...
🧵adapted to an article so it can be easily shared with individuals & across platforms.
⏳5 min read
www.longcovidadvoc.com/post/navigat...
Navigating the Bluesky 101
Discover the ins and outs of navigating the vibrant community of Bluesky. From accessibility to finding your tribe, this guide has got you covered!
www.longcovidadvoc.com
November 13, 2024 at 11:17 AM
Discover the ins & outs of navigating the vibrant community of Bluesky. From accessibility to finding your tribe. This guide has you covered.
🧵adapted to an article so it can be easily shared with individuals & across platforms.
⏳5 min read
www.longcovidadvoc.com/post/navigat...
🧵adapted to an article so it can be easily shared with individuals & across platforms.
⏳5 min read
www.longcovidadvoc.com/post/navigat...