Brian Fog
@uselesspriest.bsky.social
Long COVID, mild, since Apr 2022
ME / Long COVID diagnosed May 2024
ME / Long COVID diagnosed May 2024
Pinned
Brian Fog
@uselesspriest.bsky.social
· Nov 17
ME, whether acquired after COVID or not, is about watching - with perfect discipline and minimal emotion - your life drift away in slow motion.
Reposted by Brian Fog
ME/CFS is a devastating condition that has long been denied, dismissed, psychologised and underdiagnosed. Research is at last starting to catch up with it, with glimmers of hope for those who have been left untreated for so long.
There's a huge BUT coming ...🧵
www.theguardian.com/society/2025...
There's a huge BUT coming ...🧵
www.theguardian.com/society/2025...
Scientists develop first ‘accurate blood test’ to detect chronic fatigue syndrome
Research could offer hope for ME patients – but some experts urge caution and say more studies needed
www.theguardian.com
October 8, 2025 at 6:09 AM
ME/CFS is a devastating condition that has long been denied, dismissed, psychologised and underdiagnosed. Research is at last starting to catch up with it, with glimmers of hope for those who have been left untreated for so long.
There's a huge BUT coming ...🧵
www.theguardian.com/society/2025...
There's a huge BUT coming ...🧵
www.theguardian.com/society/2025...
Reposted by Brian Fog
#MaeveInquest update! All credit to NHS Devon for innovating the first step towards an ME specific NHS pathway. For planned and unplanned hospital admissions, details are now public and available here, www.royaldevon.nhs.uk/services/mya...
NHS Royal Devon | Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS)
www.royaldevon.nhs.uk
December 11, 2024 at 5:08 PM
#MaeveInquest update! All credit to NHS Devon for innovating the first step towards an ME specific NHS pathway. For planned and unplanned hospital admissions, details are now public and available here, www.royaldevon.nhs.uk/services/mya...
Reposted by Brian Fog
The Irish health service has initiated a process to develop a clinical guideline for ME (#MyalgicEncephalomyelitis). I am honoured to be part of its Steering Group
The process so far has been extremely progressive
I am hugely optimistic that a world-leading guideline will be produced
#pwME #MECFS
The process so far has been extremely progressive
I am hugely optimistic that a world-leading guideline will be produced
#pwME #MECFS
Myalgic Encephalomyelitis (ME) - HSE.ie
www.hse.ie
September 9, 2025 at 2:46 PM
Reposted by Brian Fog
As a person with Very Severe ME, I hate how articles describe ME.
“chronic fatigue, some people can’t exercise and work, often people have headaches and nausea”.
I haven’t
* left my bed in 2 years
* spoke in 1.5 years
* heard a human voice in 1.5 years
And that’s how you describe my illness?
“chronic fatigue, some people can’t exercise and work, often people have headaches and nausea”.
I haven’t
* left my bed in 2 years
* spoke in 1.5 years
* heard a human voice in 1.5 years
And that’s how you describe my illness?
March 20, 2025 at 2:03 PM
As a person with Very Severe ME, I hate how articles describe ME.
“chronic fatigue, some people can’t exercise and work, often people have headaches and nausea”.
I haven’t
* left my bed in 2 years
* spoke in 1.5 years
* heard a human voice in 1.5 years
And that’s how you describe my illness?
“chronic fatigue, some people can’t exercise and work, often people have headaches and nausea”.
I haven’t
* left my bed in 2 years
* spoke in 1.5 years
* heard a human voice in 1.5 years
And that’s how you describe my illness?
Reposted by Brian Fog
A Dutch #pwME urgently needs TPN (Total Parenteral Nutrition) because she has gastroparesis and cannot tolerate food or any other form of tube feeding. But the hospital refuses, saying they don’t provide this to pw ME.
Is there anyone in the international community who can help?
Is there anyone in the international community who can help?
August 19, 2025 at 8:07 AM
A Dutch #pwME urgently needs TPN (Total Parenteral Nutrition) because she has gastroparesis and cannot tolerate food or any other form of tube feeding. But the hospital refuses, saying they don’t provide this to pw ME.
Is there anyone in the international community who can help?
Is there anyone in the international community who can help?
Reposted by Brian Fog
Today (Sat 9th) from 6pm on LBC
-Labour is trying to deter small boat crossings and neutralise Farage with scary videos.
- Have ever been told your ME ‘isn’t real’?
-Badenoch claims Black & white working class kids are discouraged from applying to Oxbridge & pushed to vocational quals by teachers.
-Labour is trying to deter small boat crossings and neutralise Farage with scary videos.
- Have ever been told your ME ‘isn’t real’?
-Badenoch claims Black & white working class kids are discouraged from applying to Oxbridge & pushed to vocational quals by teachers.
August 9, 2025 at 4:31 PM
Today (Sat 9th) from 6pm on LBC
-Labour is trying to deter small boat crossings and neutralise Farage with scary videos.
- Have ever been told your ME ‘isn’t real’?
-Badenoch claims Black & white working class kids are discouraged from applying to Oxbridge & pushed to vocational quals by teachers.
-Labour is trying to deter small boat crossings and neutralise Farage with scary videos.
- Have ever been told your ME ‘isn’t real’?
-Badenoch claims Black & white working class kids are discouraged from applying to Oxbridge & pushed to vocational quals by teachers.
Reposted by Brian Fog
I am once again contemplating this banger.
August 8, 2025 at 2:21 PM
I am once again contemplating this banger.
Reposted by Brian Fog
Isla's mother has been arrested under suspicion of causing her death from ME last year (heart failure). There was no inquest. Isla's younger sister (15), who also has ME, has been removed from the only people who understand how the disease must be managed. Imagine her fear.
#MEKills #HumanRights
#MEKills #HumanRights
July 31, 2025 at 6:45 AM
Isla's mother has been arrested under suspicion of causing her death from ME last year (heart failure). There was no inquest. Isla's younger sister (15), who also has ME, has been removed from the only people who understand how the disease must be managed. Imagine her fear.
#MEKills #HumanRights
#MEKills #HumanRights
Reposted by Brian Fog
The BMJ has now published my rapid response to Miller et al's Opinion piece.
www.bmj.com/content/389/...
www.bmj.com/content/389/...
May 16, 2025 at 8:58 AM
The BMJ has now published my rapid response to Miller et al's Opinion piece.
www.bmj.com/content/389/...
www.bmj.com/content/389/...
Reposted by Brian Fog
Friends, please follow @meactnet.bsky.social and other #MyalgicEncephalomyelitis #MECFS #LongCovid #IACC orgs and join in #WorldMEDay #MillionsMissing actions in May and beyond ❤️.
#GreatestMEdicalScandal #TeachMETreatME #pwME #SevereME #MEKills #DontLetMEDie #JohnVsJonVsME
#GreatestMEdicalScandal #TeachMETreatME #pwME #SevereME #MEKills #DontLetMEDie #JohnVsJonVsME
April 13, 2025 at 6:38 PM
Friends, please follow @meactnet.bsky.social and other #MyalgicEncephalomyelitis #MECFS #LongCovid #IACC orgs and join in #WorldMEDay #MillionsMissing actions in May and beyond ❤️.
#GreatestMEdicalScandal #TeachMETreatME #pwME #SevereME #MEKills #DontLetMEDie #JohnVsJonVsME
#GreatestMEdicalScandal #TeachMETreatME #pwME #SevereME #MEKills #DontLetMEDie #JohnVsJonVsME
Reposted by Brian Fog
My friend @catofrederiks.bsky.social is launching a fundraiser for her spinal fusion. She has ME/CFS and has severe issues. Please share around, any 5€ is more than welcome 🙏🏻 🙏🏻
In order to (hopefully) at some point live my life with less CCI (and maybe less ME? Pretty please?) I'll need a C0-C2 fusion... and quite a bit of money. If you have some to spare, I'd be eternally grateful
gofund.me/31b04957
gofund.me/31b04957
April 4, 2025 at 4:37 PM
My friend @catofrederiks.bsky.social is launching a fundraiser for her spinal fusion. She has ME/CFS and has severe issues. Please share around, any 5€ is more than welcome 🙏🏻 🙏🏻
Reposted by Brian Fog
This is deeply shocking and disturbing, the opposite of scientific good practice. As I see it, a group of diehards promoting a discredited treatment (exercise "therapy" for ME/CFS patients) are seeking to stifle medical progress - to protect their reputations. And Cochrane has kowtowed to them. 🧵
I never thought a day would come when I would write a post this critical about the Cochrane Collaboration. But today was that day:
absolutelymaybe.plos.org/2025/01/24/w...
#mecfs
absolutelymaybe.plos.org/2025/01/24/w...
#mecfs
When Journal, Scientific Society, and Community Values Clash - Absolutely Maybe
A process I’ve been involved with at a journal recently exploded. It was meant to resolve a controversy about a publication, not…
absolutelymaybe.plos.org
January 29, 2025 at 8:57 AM
This is deeply shocking and disturbing, the opposite of scientific good practice. As I see it, a group of diehards promoting a discredited treatment (exercise "therapy" for ME/CFS patients) are seeking to stifle medical progress - to protect their reputations. And Cochrane has kowtowed to them. 🧵
I'm impressed by this handout on PEM. This is attached along with the information every GP needs to register patients with the Long COVID clinics in the Netherlands.
I will put the salient text below in thread.
I will put the salient text below in thread.
January 4, 2025 at 4:09 PM
I'm impressed by this handout on PEM. This is attached along with the information every GP needs to register patients with the Long COVID clinics in the Netherlands.
I will put the salient text below in thread.
I will put the salient text below in thread.
“We’re getting by, but we’re … Jesus, I don’t know. We’re probably going to have to tap into our retirement funds. It’s really impacted our life financially, medically, just everything.”
www.hrdive.com/news/employe...
www.hrdive.com/news/employe...
Employees with long COVID face pushback in the workplace, research finds
From having accommodation requests rejected to struggling to afford care, many of those with long COVID see a dearth of employer support.
www.hrdive.com
January 4, 2025 at 1:36 PM
“We’re getting by, but we’re … Jesus, I don’t know. We’re probably going to have to tap into our retirement funds. It’s really impacted our life financially, medically, just everything.”
www.hrdive.com/news/employe...
www.hrdive.com/news/employe...
So bookmarks aren’t a thing over here?
January 4, 2025 at 12:20 PM
So bookmarks aren’t a thing over here?
Reposted by Brian Fog
#NEISvoid in the Netherlands:
Does anyone in NL know of a facility that could provide tube feeding and also accommodate the needs of severe ME (even the stimulation of a home visit is causing crashing)?
CC @uselesspriest.bsky.social
Does anyone in NL know of a facility that could provide tube feeding and also accommodate the needs of severe ME (even the stimulation of a home visit is causing crashing)?
CC @uselesspriest.bsky.social
January 2, 2025 at 11:16 PM
#NEISvoid in the Netherlands:
Does anyone in NL know of a facility that could provide tube feeding and also accommodate the needs of severe ME (even the stimulation of a home visit is causing crashing)?
CC @uselesspriest.bsky.social
Does anyone in NL know of a facility that could provide tube feeding and also accommodate the needs of severe ME (even the stimulation of a home visit is causing crashing)?
CC @uselesspriest.bsky.social
Reposted by Brian Fog
Shared research agenda setting in #LongCovid. Grateful to colleagues for being a part of this important open access work: "Priorities for Research, Education, Clinical Practice, and Policy From the Long COVID Physio International Forum." @longcovidphysio.bsky.social journals.lww.com/cptj/pages/a...
Priorities for Research, Education, Clinical Practice, and... : Cardiopulmonary Physical Therapy Journal
litation.
Methods:
We conducted an international consultation on priorities for long COVID and rehabilitation with people living with long COVID, clinicians, researchers, and other key interest-hol...
journals.lww.com
December 27, 2024 at 8:33 PM
Shared research agenda setting in #LongCovid. Grateful to colleagues for being a part of this important open access work: "Priorities for Research, Education, Clinical Practice, and Policy From the Long COVID Physio International Forum." @longcovidphysio.bsky.social journals.lww.com/cptj/pages/a...
Reposted by Brian Fog
Anyone has any experience with StadHolland or DSW? My therapist has reached an agreement with them so without my #Restitutiepolis I need to go with either to continue (paid) care, but I don’t know them and I’m very overwhelmed.
#NEISVoid #Nederland #Zorg #Zorgverzekering #Combinatiepolis #Help
#NEISVoid #Nederland #Zorg #Zorgverzekering #Combinatiepolis #Help
December 19, 2024 at 6:48 PM
Anyone has any experience with StadHolland or DSW? My therapist has reached an agreement with them so without my #Restitutiepolis I need to go with either to continue (paid) care, but I don’t know them and I’m very overwhelmed.
#NEISVoid #Nederland #Zorg #Zorgverzekering #Combinatiepolis #Help
#NEISVoid #Nederland #Zorg #Zorgverzekering #Combinatiepolis #Help
Reposted by Brian Fog
HELP! Huishoudelijke hulp via de #WMO.
Be have been offered: Veade, Origin Zorg, Tzorg and Wens je zorg.
Does anyone have any experience with them or advice?
We need to choose but we have zero knowledge and really need the help and that they mask, since I am high risk for COVID.
#Thuishulp #NEISVoid
Be have been offered: Veade, Origin Zorg, Tzorg and Wens je zorg.
Does anyone have any experience with them or advice?
We need to choose but we have zero knowledge and really need the help and that they mask, since I am high risk for COVID.
#Thuishulp #NEISVoid
December 21, 2024 at 1:27 PM
HELP! Huishoudelijke hulp via de #WMO.
Be have been offered: Veade, Origin Zorg, Tzorg and Wens je zorg.
Does anyone have any experience with them or advice?
We need to choose but we have zero knowledge and really need the help and that they mask, since I am high risk for COVID.
#Thuishulp #NEISVoid
Be have been offered: Veade, Origin Zorg, Tzorg and Wens je zorg.
Does anyone have any experience with them or advice?
We need to choose but we have zero knowledge and really need the help and that they mask, since I am high risk for COVID.
#Thuishulp #NEISVoid
Survivalism but it's just a person with chronic illness.
December 29, 2024 at 9:37 AM
Survivalism but it's just a person with chronic illness.
I set up a GFM for Long COVID research. Everything will go to PLRC. gofund.me/cc9ab16a
Donate to Owen's Birthday Fundraiser For Long COVID Research, organized by Owen White
Please help me raise funds for Long COVID research! All funds will go to… Owen White needs your support for Owen's Birthday Fundraiser For Long COVID Research
gofund.me
December 22, 2024 at 2:25 PM
I set up a GFM for Long COVID research. Everything will go to PLRC. gofund.me/cc9ab16a
A common response in my experience is, “I know someone who got Long COVID and they recovered.”
I don’t think this one is cognitive dissonance so much as it’s an “unfortunate” reflection of the fact that many people did recover from transient sequelae.
I don’t think this one is cognitive dissonance so much as it’s an “unfortunate” reflection of the fact that many people did recover from transient sequelae.
Reasons people say they don’t know anyone with Long Covid:
They don’t listen when someone tells them
They’ve shown themselves to be unsafe so people choose NOT to tell them
They have Long Covid and are in deep denial
You know someone with Long Covid. We all do.
They don’t listen when someone tells them
They’ve shown themselves to be unsafe so people choose NOT to tell them
They have Long Covid and are in deep denial
You know someone with Long Covid. We all do.
December 22, 2024 at 10:18 AM
A common response in my experience is, “I know someone who got Long COVID and they recovered.”
I don’t think this one is cognitive dissonance so much as it’s an “unfortunate” reflection of the fact that many people did recover from transient sequelae.
I don’t think this one is cognitive dissonance so much as it’s an “unfortunate” reflection of the fact that many people did recover from transient sequelae.
Reposted by Brian Fog
Yes, I’m definitely #ThereForME. Too many #pwME live with darkness. We’re all poorer for it. It’s time for @DHSCgovuk and @NHSuk to finally give #ME & #LongCovid the response they deserve.
Tessa Munt is #ThereForME in parliament! @tessamunt.bsky.social is @libdems.org.uk MP for Wells & Mendip Hills and has been a staunch ally.
Her message: “Let’s get people with ME into the light in 2025! Tessa x”
#PatientSafety #pwME #pwLC #ThereForME
Her message: “Let’s get people with ME into the light in 2025! Tessa x”
#PatientSafety #pwME #pwLC #ThereForME
December 21, 2024 at 8:30 AM
Yes, I’m definitely #ThereForME. Too many #pwME live with darkness. We’re all poorer for it. It’s time for @DHSCgovuk and @NHSuk to finally give #ME & #LongCovid the response they deserve.
Everything is on the patient. Everything. Finding out how the illness works. Finding out you need to pace (despite what you're told). Deciding how to much risk to take with infection. Finding out how to mitigate infection. Deciding how much risk to take with treatment.
December 21, 2024 at 10:27 AM
Everything is on the patient. Everything. Finding out how the illness works. Finding out you need to pace (despite what you're told). Deciding how to much risk to take with infection. Finding out how to mitigate infection. Deciding how much risk to take with treatment.