Dan Wyke
@danwyke.bsky.social
M.E. inactivist, person-centred counsellor, recovering poet (Rack & Waterloo Press)
'A Momentary Pause in the Act of Dying'. Hillary Johnson writes about hypovolemic shock and low blood volume in Myalgic Encephalomyelitis.
hillaryjohnson.substack.com/p/a-momentary-…
hillaryjohnson.substack.com/p/a-momentary-…
https://hillaryjohnson.substack.com/p/a-momentary-…
March 14, 2025 at 5:49 PM
'A Momentary Pause in the Act of Dying'. Hillary Johnson writes about hypovolemic shock and low blood volume in Myalgic Encephalomyelitis.
hillaryjohnson.substack.com/p/a-momentary-…
hillaryjohnson.substack.com/p/a-momentary-…
"ME/CFS is a diagnosable sequela that develops at an increased rate following SARS-CoV-2 infection."
link.springer.com/article/10.1...
link.springer.com/article/10.1...
Incidence and Prevalence of Post-COVID-19 Myalgic Encephalomyelitis: A Report from the Observational RECOVER-Adult Study - Journal of General Internal Medicine
Background Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) may occur after infection. How often people develop ME/CFS after SARS-CoV-2 infection is unknown. Objective To determine the inci...
link.springer.com
January 19, 2025 at 8:04 AM
"ME/CFS is a diagnosable sequela that develops at an increased rate following SARS-CoV-2 infection."
link.springer.com/article/10.1...
link.springer.com/article/10.1...
New research paper: 'Abnormal T-Cell Activation and Cytotoxic T-Cell Frequency Discriminates Symptom Severity in ME/CFS'
www.medrxiv.org/content/10.1...
www.medrxiv.org/content/10.1...
Abnormal T-Cell Activation And Cytotoxic T-Cell Frequency Discriminates Symptom Severity In Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a debilitating but poorly-understood disease. ME/CFS symptoms can range from mild to severe, and include immune system effects alongside ...
www.medrxiv.org
January 8, 2025 at 7:54 AM
New research paper: 'Abnormal T-Cell Activation and Cytotoxic T-Cell Frequency Discriminates Symptom Severity in ME/CFS'
www.medrxiv.org/content/10.1...
www.medrxiv.org/content/10.1...
I just had a really interesting conversation about Myalgic Encephalomyelitis with Gemini. It was more knowledgeable (and sympathetic) than any of my registered GPs from the last 15 years.
December 14, 2024 at 2:45 PM
I just had a really interesting conversation about Myalgic Encephalomyelitis with Gemini. It was more knowledgeable (and sympathetic) than any of my registered GPs from the last 15 years.
Thinking about taking mushrooms again to fix the persistent downregulation of my immune system and overexpression of inflammatory cytokines. Can any medically minded mycologists say how long a herx response should last? In the past I've had to give up after two or three days.
December 11, 2024 at 9:21 AM
Thinking about taking mushrooms again to fix the persistent downregulation of my immune system and overexpression of inflammatory cytokines. Can any medically minded mycologists say how long a herx response should last? In the past I've had to give up after two or three days.
Although most doctors accept Post-viral Fatigue is a common medical condition, I'm yet to meet one who can explain its pathophysiology. PVFS has been around for decades so why hasn't it been deeply researched? Surely it would shed some light on Myalgic Encephalomyelitis. 🤨
December 11, 2024 at 9:20 AM
Although most doctors accept Post-viral Fatigue is a common medical condition, I'm yet to meet one who can explain its pathophysiology. PVFS has been around for decades so why hasn't it been deeply researched? Surely it would shed some light on Myalgic Encephalomyelitis. 🤨
Results from the DHSC's ‘Women’s Health – Let’s talk about it’ survey are in the news again today. 100,000 women in England responded. More than 4 in 5 (84%) said they weren't listened to by HCPs and their symptoms weren't taken seriously or dismissed. gov.uk/government/cal…
December 11, 2024 at 8:36 AM
Results from the DHSC's ‘Women’s Health – Let’s talk about it’ survey are in the news again today. 100,000 women in England responded. More than 4 in 5 (84%) said they weren't listened to by HCPs and their symptoms weren't taken seriously or dismissed. gov.uk/government/cal…
It's odd that most drs have no problem accepting Post-viral Fatigue but they respond with a completely different attitude when it develops into a chronic condition like Myalgic Encephalomyelitis. Do they just run out of sympathy or does bps brainwashing kick in?
December 10, 2024 at 10:26 PM
It's odd that most drs have no problem accepting Post-viral Fatigue but they respond with a completely different attitude when it develops into a chronic condition like Myalgic Encephalomyelitis. Do they just run out of sympathy or does bps brainwashing kick in?
My teenage daughter's fate hangs in the balance. Will her Post-viral Fatigue fizzle out or will it develop into a chronic condition like Myalgic Encephalomyelitis? One thing's certain, the medical profession has nothing to offer her that will prevent the latter from happening.
December 10, 2024 at 8:30 PM
My teenage daughter's fate hangs in the balance. Will her Post-viral Fatigue fizzle out or will it develop into a chronic condition like Myalgic Encephalomyelitis? One thing's certain, the medical profession has nothing to offer her that will prevent the latter from happening.
A commitment by NHS England to review ME services sounds like a way to placate patients and further delay meaningful change. If they were serious about implementing change, they would have done so in 2021, immediately after the release of NICE guidelines.
December 7, 2024 at 11:23 AM
A commitment by NHS England to review ME services sounds like a way to placate patients and further delay meaningful change. If they were serious about implementing change, they would have done so in 2021, immediately after the release of NICE guidelines.
With the release of the ME/CFS Delivery Plan delayed again, it's obvious this government has no intention of providing meaningful support for pwME, despite the lip service paid by various MPs. The government cannot be seen to favour one group of chronically ill patients while persecuting the rest.
December 7, 2024 at 8:57 AM
With the release of the ME/CFS Delivery Plan delayed again, it's obvious this government has no intention of providing meaningful support for pwME, despite the lip service paid by various MPs. The government cannot be seen to favour one group of chronically ill patients while persecuting the rest.
I suspect this government has delayed releasing the Delivery Plan for Myalgic Encephalomyelitis for the same reason ME isn't mentioned in the Get Britain Working White Paper: ministers don't want to acknowledge the high number of chronically ill people eligible to receive benefits.
November 27, 2024 at 9:11 AM
I suspect this government has delayed releasing the Delivery Plan for Myalgic Encephalomyelitis for the same reason ME isn't mentioned in the Get Britain Working White Paper: ministers don't want to acknowledge the high number of chronically ill people eligible to receive benefits.
Teenage daughter has been diagnosed with Post-viral Fatigue Syndrome which is obviously a cause for concern given my medical history. Talking with her GP, what struck me was that nothing has improved since I approached him in a similar situation 14 years ago. 1/2
November 24, 2024 at 8:04 PM
Teenage daughter has been diagnosed with Post-viral Fatigue Syndrome which is obviously a cause for concern given my medical history. Talking with her GP, what struck me was that nothing has improved since I approached him in a similar situation 14 years ago. 1/2
Reposted by Dan Wyke
Dear 🇬🇧,
Where I come from, one medical emergency is all it takes to bankrupt a family and put them out on the street. Don't ever give up on the NHS.
#SOSNHS
Where I come from, one medical emergency is all it takes to bankrupt a family and put them out on the street. Don't ever give up on the NHS.
#SOSNHS
November 16, 2024 at 9:17 AM
Dear 🇬🇧,
Where I come from, one medical emergency is all it takes to bankrupt a family and put them out on the street. Don't ever give up on the NHS.
#SOSNHS
Where I come from, one medical emergency is all it takes to bankrupt a family and put them out on the street. Don't ever give up on the NHS.
#SOSNHS
Reposted by Dan Wyke
Hi
Looking to connect (and reconnect) with people who understand very severe ME, when health allows. Woman of few words (not by choice). Appreciate follows.
Looking to connect (and reconnect) with people who understand very severe ME, when health allows. Woman of few words (not by choice). Appreciate follows.
November 14, 2024 at 3:38 PM
Hi
Looking to connect (and reconnect) with people who understand very severe ME, when health allows. Woman of few words (not by choice). Appreciate follows.
Looking to connect (and reconnect) with people who understand very severe ME, when health allows. Woman of few words (not by choice). Appreciate follows.
Reposted by Dan Wyke
✨This petition will close TOMORROW, Nov 15!✨ We're over 7k-- next stop 10k!
In this political climate, it's more important than ever to tell NIH that we need to fund infection-associated chronic illnesses.
Sign & share widely!
US signers: lnkd.in/e99rsvdT
International signers: lnkd.in/e3TpjnTE
In this political climate, it's more important than ever to tell NIH that we need to fund infection-associated chronic illnesses.
Sign & share widely!
US signers: lnkd.in/e99rsvdT
International signers: lnkd.in/e3TpjnTE
November 14, 2024 at 2:54 PM
✨This petition will close TOMORROW, Nov 15!✨ We're over 7k-- next stop 10k!
In this political climate, it's more important than ever to tell NIH that we need to fund infection-associated chronic illnesses.
Sign & share widely!
US signers: lnkd.in/e99rsvdT
International signers: lnkd.in/e3TpjnTE
In this political climate, it's more important than ever to tell NIH that we need to fund infection-associated chronic illnesses.
Sign & share widely!
US signers: lnkd.in/e99rsvdT
International signers: lnkd.in/e3TpjnTE
Reposted by Dan Wyke
This will be my start to use this platform. I’d like to start by introducing my new photo project of documenting my life living with severe #MECFS.
I have thought about ways to advocate, and doing it through photography is the best way for me. 1/7
I have thought about ways to advocate, and doing it through photography is the best way for me. 1/7
November 14, 2024 at 8:14 AM
This will be my start to use this platform. I’d like to start by introducing my new photo project of documenting my life living with severe #MECFS.
I have thought about ways to advocate, and doing it through photography is the best way for me. 1/7
I have thought about ways to advocate, and doing it through photography is the best way for me. 1/7
Reposted by Dan Wyke
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 Dan Wyke
When you’re chronically ill - your baseline is everything. You will protect it at all costs.
Non disabled people can’t understand how much independence and autonomy means to us. Whatever small amount we have left - is priceless.
That’s why we don’t take necessary risks. We know what’s at stake.
Non disabled people can’t understand how much independence and autonomy means to us. Whatever small amount we have left - is priceless.
That’s why we don’t take necessary risks. We know what’s at stake.
November 13, 2024 at 6:47 AM
When you’re chronically ill - your baseline is everything. You will protect it at all costs.
Non disabled people can’t understand how much independence and autonomy means to us. Whatever small amount we have left - is priceless.
That’s why we don’t take necessary risks. We know what’s at stake.
Non disabled people can’t understand how much independence and autonomy means to us. Whatever small amount we have left - is priceless.
That’s why we don’t take necessary risks. We know what’s at stake.
Reposted by Dan Wyke
It is crazy that patients are still being pushed into therapy that will make them worse. Please sign the petition.
chng.it/mXFzY79BQZ
chng.it/mXFzY79BQZ
Sign the Petition
Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review
chng.it
November 11, 2024 at 5:14 PM
It is crazy that patients are still being pushed into therapy that will make them worse. Please sign the petition.
chng.it/mXFzY79BQZ
chng.it/mXFzY79BQZ
Reposted by Dan Wyke
I saw a patient last week with ME who in 2023 was told by the MECFS service to ‘get back to the gym’. She did 20 minutes, collapsed and hasn’t walked since. The advice is still out there, still wrong and the harm is real.
Cochrane is stubbornly refusing to withdraw the 2019 review recommending exercise therapy for ME/CFS despite being supplied with ample evidence that it doesn't work and causes harm for #pwME with post exertional malaise.
Please sign the petition:
chng.it/zTZ7vX9Czd
Please sign the petition:
chng.it/zTZ7vX9Czd
Can you spare a minute to help this campaign?
Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review
chng.it
November 11, 2024 at 9:25 AM
I saw a patient last week with ME who in 2023 was told by the MECFS service to ‘get back to the gym’. She did 20 minutes, collapsed and hasn’t walked since. The advice is still out there, still wrong and the harm is real.
Reposted by Dan Wyke
Karen wore both her day job hat and her campaign hat for this piece on narratives surrounding ME and Long Covid. Please read!
#ThereForME
#pwME
#pwLC
open.substack.com/pub/therefor...
#ThereForME
#pwME
#pwLC
open.substack.com/pub/therefor...
From ‘yuppie flu' to ’anti-recovery activists’
Why narratives around ME and Long Covid matter – and how to change them
open.substack.com
November 12, 2024 at 4:37 PM
Karen wore both her day job hat and her campaign hat for this piece on narratives surrounding ME and Long Covid. Please read!
#ThereForME
#pwME
#pwLC
open.substack.com/pub/therefor...
#ThereForME
#pwME
#pwLC
open.substack.com/pub/therefor...
Reposted by Dan Wyke
For the newbies, one of the great features on here is that when someone has tried to quote-post dunk on you, hit the … and select “detach quote” and nobody will see the post or who wrote it and they will look like an asshole. (Blocking works like this too.)
November 10, 2024 at 2:31 AM
For the newbies, one of the great features on here is that when someone has tried to quote-post dunk on you, hit the … and select “detach quote” and nobody will see the post or who wrote it and they will look like an asshole. (Blocking works like this too.)
Reposted by Dan Wyke
I have started a Starter Pack for ME and Long COVID. 💙
It includes some mutuals with other packs but also some new faces too. :)
Please let me know if you want to be added. I know I still have about a million wonderful people to add. 💙
go.bsky.app/6R7bqc7
It includes some mutuals with other packs but also some new faces too. :)
Please let me know if you want to be added. I know I still have about a million wonderful people to add. 💙
go.bsky.app/6R7bqc7
November 12, 2024 at 4:23 AM
I have started a Starter Pack for ME and Long COVID. 💙
It includes some mutuals with other packs but also some new faces too. :)
Please let me know if you want to be added. I know I still have about a million wonderful people to add. 💙
go.bsky.app/6R7bqc7
It includes some mutuals with other packs but also some new faces too. :)
Please let me know if you want to be added. I know I still have about a million wonderful people to add. 💙
go.bsky.app/6R7bqc7
Reposted by Dan Wyke
For those newly joining Bluesky:
Here is a starter-pack with many patients and allies from the #LongCovid #MECFS #ComplexChronicIllness community.
Not comprehensive, but maybe helpful to get you started.
go.bsky.app/LciucLP
Here is a starter-pack with many patients and allies from the #LongCovid #MECFS #ComplexChronicIllness community.
Not comprehensive, but maybe helpful to get you started.
go.bsky.app/LciucLP
November 12, 2024 at 3:57 PM
For those newly joining Bluesky:
Here is a starter-pack with many patients and allies from the #LongCovid #MECFS #ComplexChronicIllness community.
Not comprehensive, but maybe helpful to get you started.
go.bsky.app/LciucLP
Here is a starter-pack with many patients and allies from the #LongCovid #MECFS #ComplexChronicIllness community.
Not comprehensive, but maybe helpful to get you started.
go.bsky.app/LciucLP