Something Chronic
@somethingchronic.bsky.social
Mostly bedbound by severe #ME/CFS #POTS #EDS #MCAS + more. Chronically hopeful for better days. Determined to fight against injustice so people with ME + Long Covid are treated with the same belief, respect + kindness as any other serious physical illness
Pinned
Will ‘reframing my beliefs’ cure the muscle atrophy that #severeME has caused? Will it help me get downstairs in my home again after 2 years? Will it help Karen Gordon & @whitneydafoe.bsky.social? Why ignore 1000s of studies with irrefutable evidence #MECFS is physiological? @tessamunt.bsky.social
Reposted by Something Chronic
Masking indoors in public spaces boils down to this for me now:
I love never being sick from airborne infectious diseases.
The last cold I had was in early 2019, with not even a sniffle since. The only thing I don't do is dine indoors in public spaces; a good trade for health.
I love never being sick from airborne infectious diseases.
The last cold I had was in early 2019, with not even a sniffle since. The only thing I don't do is dine indoors in public spaces; a good trade for health.
November 11, 2025 at 11:12 AM
Masking indoors in public spaces boils down to this for me now:
I love never being sick from airborne infectious diseases.
The last cold I had was in early 2019, with not even a sniffle since. The only thing I don't do is dine indoors in public spaces; a good trade for health.
I love never being sick from airborne infectious diseases.
The last cold I had was in early 2019, with not even a sniffle since. The only thing I don't do is dine indoors in public spaces; a good trade for health.
Reposted by Something Chronic
Nowhere in the hysterical pile-on against the BBC in the British press has anyone mentioned that BBC News now has 77 million viewers & listeners in the US and has established itself as the second most trusted news source there.
November 11, 2025 at 8:37 AM
Nowhere in the hysterical pile-on against the BBC in the British press has anyone mentioned that BBC News now has 77 million viewers & listeners in the US and has established itself as the second most trusted news source there.
Do you have a spare room to rent?
Please rent to Anna and you’ll be helping someone in need at the same time!
(see below)
#Neisvoid #MEcfs #LongCovid
#SevereME #DomesticAbuse
#ChronicIllness #JusticeForME #UnitedForME #MutualAid #HomeShare #HouseShare #Melbourne #Australia #SOS
Please rent to Anna and you’ll be helping someone in need at the same time!
(see below)
#Neisvoid #MEcfs #LongCovid
#SevereME #DomesticAbuse
#ChronicIllness #JusticeForME #UnitedForME #MutualAid #HomeShare #HouseShare #Melbourne #Australia #SOS
Won’t someone take me in to escape #abuse?
Can pay a small rent/board, but you could get Carer Pension &/or Allowance if you provide some care.
Can provide meals & have care hours.
I don’t know why this is such a horrible arrangement - to rent a spare room.
www.thecanary.co/global/world...
Can pay a small rent/board, but you could get Carer Pension &/or Allowance if you provide some care.
Can provide meals & have care hours.
I don’t know why this is such a horrible arrangement - to rent a spare room.
www.thecanary.co/global/world...
Nearly a year on and severe ME patient Anna is still trapped in life-threatening domestic abuse
Nearly a year on and severe ME patient Anna is still trapped in life-threatening domestic abuse from Canary on 1 April 2025
www.thecanary.co
November 12, 2025 at 1:41 PM
Do you have a spare room to rent?
Please rent to Anna and you’ll be helping someone in need at the same time!
(see below)
#Neisvoid #MEcfs #LongCovid
#SevereME #DomesticAbuse
#ChronicIllness #JusticeForME #UnitedForME #MutualAid #HomeShare #HouseShare #Melbourne #Australia #SOS
Please rent to Anna and you’ll be helping someone in need at the same time!
(see below)
#Neisvoid #MEcfs #LongCovid
#SevereME #DomesticAbuse
#ChronicIllness #JusticeForME #UnitedForME #MutualAid #HomeShare #HouseShare #Melbourne #Australia #SOS
Reposted by Something Chronic
Pleased to see this getting discussed. There is a total lack of support in the UK for people with Ehlers Danlos Syndrome suffering Craniocervical Instability.
We've been on this awful journey & fundraised for major neurosurgery in Spain, it saved Liv's life when NHS wouldn't help.
#EDS #CCI
We've been on this awful journey & fundraised for major neurosurgery in Spain, it saved Liv's life when NHS wouldn't help.
#EDS #CCI
September 12, 2025 at 12:37 PM
Reposted by Something Chronic
During Dysautonomia Awareness Month, ME Research UK have been highlighting conditions that are reported to co-occur both with dysautonomia and with ME/CFS, such as Ehlers-Danlos syndrome, a group of connective tissue disorders that can have devastating complications.
tinyurl.com/3cta7fwf
#EDS
tinyurl.com/3cta7fwf
#EDS
October 26, 2025 at 4:30 PM
During Dysautonomia Awareness Month, ME Research UK have been highlighting conditions that are reported to co-occur both with dysautonomia and with ME/CFS, such as Ehlers-Danlos syndrome, a group of connective tissue disorders that can have devastating complications.
tinyurl.com/3cta7fwf
#EDS
tinyurl.com/3cta7fwf
#EDS
Reposted by Something Chronic
A number of UK charities have joined together to create an Overlapping Illness Alliance (OIA).
It will be hosting a drop-in event at the Houses of Parliament on the 25th Nov at 3pm.
Info on how to to write to your MP here:
https://meassociation.org.uk/ttrr
#MECFS #LongCovid #PoTS #EDS #MCAS #OIA
It will be hosting a drop-in event at the Houses of Parliament on the 25th Nov at 3pm.
Info on how to to write to your MP here:
https://meassociation.org.uk/ttrr
#MECFS #LongCovid #PoTS #EDS #MCAS #OIA
Overlapping Illnesses Alliance: Parliamentary Drop In Event - ask your MP to attend - The ME Association
UK charities have joined together to create an Overlapping Illness […]
meassociation.org.uk
November 10, 2025 at 10:26 AM
A number of UK charities have joined together to create an Overlapping Illness Alliance (OIA).
It will be hosting a drop-in event at the Houses of Parliament on the 25th Nov at 3pm.
Info on how to to write to your MP here:
https://meassociation.org.uk/ttrr
#MECFS #LongCovid #PoTS #EDS #MCAS #OIA
It will be hosting a drop-in event at the Houses of Parliament on the 25th Nov at 3pm.
Info on how to to write to your MP here:
https://meassociation.org.uk/ttrr
#MECFS #LongCovid #PoTS #EDS #MCAS #OIA
Reposted by Something Chronic
Systrom: "Many of us in the field..believe that ME/CFS is often, but not always..post-infectious..for not totally clear reasons, there is autoimmunity, which may run amuck on overdrive with associated inflammation...then downstream.those pathways, we think there are some issues with oxygen supply.."
Open Medicine Foundation: 'An Interview with Ron Davis, PhD, and David Systrom, MD: Low Oxygen, Low Energy'
www.youtube.com/watch?v=KILx...
www.youtube.com/watch?v=KILx...
An Interview with Ron Davis, PhD, and David Systrom, MD: Low Oxygen, Low Energy
YouTube video by Open Medicine Foundation - OMF
www.youtube.com
November 11, 2025 at 5:44 PM
Systrom: "Many of us in the field..believe that ME/CFS is often, but not always..post-infectious..for not totally clear reasons, there is autoimmunity, which may run amuck on overdrive with associated inflammation...then downstream.those pathways, we think there are some issues with oxygen supply.."
Reposted by Something Chronic
Trump is attacking the independence of the BBC in the same way that he has threatened and undermined US media.
Trump must not be allowed to interfere in the British media. Sign our petition here:
stoptrump.org.uk/petition-bbc/
Trump must not be allowed to interfere in the British media. Sign our petition here:
stoptrump.org.uk/petition-bbc/
Petition: Defend BBC independence from Trump’s interference
Stop Trump Coalition
stoptrump.org.uk
November 10, 2025 at 2:26 PM
Trump is attacking the independence of the BBC in the same way that he has threatened and undermined US media.
Trump must not be allowed to interfere in the British media. Sign our petition here:
stoptrump.org.uk/petition-bbc/
Trump must not be allowed to interfere in the British media. Sign our petition here:
stoptrump.org.uk/petition-bbc/
Reposted by Something Chronic
England homelessness grown by a fifth since 2022, now 300,000.
Successive govts cut local authority funding in real terms, cut real wages/benefits, no curbs on profiteering, lack of social housing.
Cheaper to build social housing than using temporary accommodation.
Misery is a political choice.
Successive govts cut local authority funding in real terms, cut real wages/benefits, no curbs on profiteering, lack of social housing.
Cheaper to build social housing than using temporary accommodation.
Misery is a political choice.
Homelessness figures higher than data suggests, research shows
Official data for England underestimates the scale of the problem, according to research for charity Crisis says.
www.bbc.co.uk
November 10, 2025 at 7:12 AM
England homelessness grown by a fifth since 2022, now 300,000.
Successive govts cut local authority funding in real terms, cut real wages/benefits, no curbs on profiteering, lack of social housing.
Cheaper to build social housing than using temporary accommodation.
Misery is a political choice.
Successive govts cut local authority funding in real terms, cut real wages/benefits, no curbs on profiteering, lack of social housing.
Cheaper to build social housing than using temporary accommodation.
Misery is a political choice.
Reposted by Something Chronic
The IEA is not a charity. it is a right wing malevolent think tank abusing charity laws.
I hope Frosty the Idiot is as successful in running it as with brexit and hence we never hear of the IEA again.
I hope Frosty the Idiot is as successful in running it as with brexit and hence we never hear of the IEA again.
Former chief Brexit negotiator to lead charity
Former chief Brexit negotiator to lead charity
Lord David Frost has retired the Conservative whip to take up his new role
www.thirdsector.co.uk
November 10, 2025 at 9:22 AM
The IEA is not a charity. it is a right wing malevolent think tank abusing charity laws.
I hope Frosty the Idiot is as successful in running it as with brexit and hence we never hear of the IEA again.
I hope Frosty the Idiot is as successful in running it as with brexit and hence we never hear of the IEA again.
Reposted by Something Chronic
🔴 Treasury Criticised by Leading Labour MP for ‘Short-Sighted’ Refusal to Back Rainforest Fund at COP30
Olivia Blake MP warns Government that “what happens in the global south affects the global north” and calls for ministers to prioritise taxing private jets
open.substack.com/pub/bylinesu...
Olivia Blake MP warns Government that “what happens in the global south affects the global north” and calls for ministers to prioritise taxing private jets
open.substack.com/pub/bylinesu...
Treasury Criticised by Leading Labour MP for ‘Short-Sighted’ Refusal to Back Rainforest Fund at COP30
Olivia Blake warns Government that “what happens in the global south affects the global north” and calls for ministers to prioritise taxing private jets
open.substack.com
November 8, 2025 at 8:34 PM
🔴 Treasury Criticised by Leading Labour MP for ‘Short-Sighted’ Refusal to Back Rainforest Fund at COP30
Olivia Blake MP warns Government that “what happens in the global south affects the global north” and calls for ministers to prioritise taxing private jets
open.substack.com/pub/bylinesu...
Olivia Blake MP warns Government that “what happens in the global south affects the global north” and calls for ministers to prioritise taxing private jets
open.substack.com/pub/bylinesu...
Reposted by Something Chronic
Wrote a thing about why it’s probably time to ban X in the UK - substack.com/inbox/post/1...
Time to Ban X in the UK?
Probably.... But How Do You Stand Up to a Trillionaire?
substack.com
November 7, 2025 at 11:59 AM
Wrote a thing about why it’s probably time to ban X in the UK - substack.com/inbox/post/1...
Reposted by Something Chronic
For many of us, the most we can do is shout and advocate on Social Media.
Because… well we’re actually disabled.
And it means we don’t have the time, energy, or capacity to do any more.
And for some they can’t even do this. Doesn’t mean they’re bad people.
Because… well we’re actually disabled.
And it means we don’t have the time, energy, or capacity to do any more.
And for some they can’t even do this. Doesn’t mean they’re bad people.
November 7, 2025 at 10:33 AM
For many of us, the most we can do is shout and advocate on Social Media.
Because… well we’re actually disabled.
And it means we don’t have the time, energy, or capacity to do any more.
And for some they can’t even do this. Doesn’t mean they’re bad people.
Because… well we’re actually disabled.
And it means we don’t have the time, energy, or capacity to do any more.
And for some they can’t even do this. Doesn’t mean they’re bad people.
Thank you #JusticeForME! Please see the update via the link for more:
“… it was the positive response we were asking for. Without making any promises, the need for seamless NHS provision fit for meeting the needs of all people living with ME, regardless of disease severity, was recognised.“
#MEcfs
“… it was the positive response we were asking for. Without making any promises, the need for seamless NHS provision fit for meeting the needs of all people living with ME, regardless of disease severity, was recognised.“
#MEcfs
NHS care for ME now
Campaigning for ME (Myalgic Encephalomyelitis) to be medically managed safely, to protect families from permanent disability or death from neglect of the illness.
www.crowdjustice.com
November 7, 2025 at 10:28 AM
Thank you #JusticeForME! Please see the update via the link for more:
“… it was the positive response we were asking for. Without making any promises, the need for seamless NHS provision fit for meeting the needs of all people living with ME, regardless of disease severity, was recognised.“
#MEcfs
“… it was the positive response we were asking for. Without making any promises, the need for seamless NHS provision fit for meeting the needs of all people living with ME, regardless of disease severity, was recognised.“
#MEcfs
Reposted by Something Chronic
The review is open to everyone. Provide your evidence here. Strongly recommend every family persecuted by social workers too lazy to read NICE G206 make their voices heard. www.gov.uk/government/c...
November 6, 2025 at 8:57 AM
The review is open to everyone. Provide your evidence here. Strongly recommend every family persecuted by social workers too lazy to read NICE G206 make their voices heard. www.gov.uk/government/c...
Seems to be a theme for the current government; make a plan but don’t back it with any meaningful money for it to actually work…
People have been knowingly dying of ME for decades & nothing is being done. There isn’t one specialist service in the NHS
#SevereME #JusticeForME #FundThePlan #LongCovid
People have been knowingly dying of ME for decades & nothing is being done. There isn’t one specialist service in the NHS
#SevereME #JusticeForME #FundThePlan #LongCovid
That the UK - one of the architects of this fund, designed to save the world’s forests - is now refusing to put any money into it is frankly shameful. Starmer’s claim that he still continues to back the fund is meaningless without resources - so much for climate leadership
November 6, 2025 at 12:54 PM
Seems to be a theme for the current government; make a plan but don’t back it with any meaningful money for it to actually work…
People have been knowingly dying of ME for decades & nothing is being done. There isn’t one specialist service in the NHS
#SevereME #JusticeForME #FundThePlan #LongCovid
People have been knowingly dying of ME for decades & nothing is being done. There isn’t one specialist service in the NHS
#SevereME #JusticeForME #FundThePlan #LongCovid
Reposted by Something Chronic
Gotta love Private Eye.
Always cuts through the crap.
Always cuts through the crap.
October 31, 2025 at 7:38 PM
Gotta love Private Eye.
Always cuts through the crap.
Always cuts through the crap.
Would you like to make a difference to people’s lives today?
Please donate to David Tuller’s crowdfunder!
David’s been a courageous voice for people with #MEcfs & #LongCovid across the world for over a decade
We’re too sick to properly advocate for ourselves & need support!
#SevereME #UnitedForME
Please donate to David Tuller’s crowdfunder!
David’s been a courageous voice for people with #MEcfs & #LongCovid across the world for over a decade
We’re too sick to properly advocate for ourselves & need support!
#SevereME #UnitedForME
With several days left to go, the current Berkeley crowdfunder for Trial By Error has received 400 donations! The support is greatly appreciated!!
crowdfund.berkeley.edu/project/47768
crowdfund.berkeley.edu/project/47768
David Tuller's Trial by Error Fall 2025
Help UC Berkeley raise $68,000 for the project: David Tuller's Trial by Error Fall 2025. Your gift will make a difference!
crowdfund.berkeley.edu
November 5, 2025 at 3:53 AM
Would you like to make a difference to people’s lives today?
Please donate to David Tuller’s crowdfunder!
David’s been a courageous voice for people with #MEcfs & #LongCovid across the world for over a decade
We’re too sick to properly advocate for ourselves & need support!
#SevereME #UnitedForME
Please donate to David Tuller’s crowdfunder!
David’s been a courageous voice for people with #MEcfs & #LongCovid across the world for over a decade
We’re too sick to properly advocate for ourselves & need support!
#SevereME #UnitedForME
Reposted by Something Chronic
Notable in today's YouGov that the centre/left bloc - Lab/Green/LD/SNP are on 54%. With Reform/Tories on 43%. That's the biggest differential in a long time.
I think useful to track blocs given instability between parties at the moment.
I think useful to track blocs given instability between parties at the moment.
November 4, 2025 at 10:23 AM
Notable in today's YouGov that the centre/left bloc - Lab/Green/LD/SNP are on 54%. With Reform/Tories on 43%. That's the biggest differential in a long time.
I think useful to track blocs given instability between parties at the moment.
I think useful to track blocs given instability between parties at the moment.
Reposted by Something Chronic
A total and utter hero
November 4, 2025 at 11:08 AM
A total and utter hero
Reposted by Something Chronic
Adam Fare 🖤🤍💜
If someone is unable to work…
They’re unable to work.
No amount of “support” or “punishment” will change that.
Taking away or reducing disability benefits won’t change that.
All it’ll do is kill them.
If someone is unable to work…
They’re unable to work.
No amount of “support” or “punishment” will change that.
Taking away or reducing disability benefits won’t change that.
All it’ll do is kill them.
November 3, 2025 at 8:57 AM
Adam Fare 🖤🤍💜
If someone is unable to work…
They’re unable to work.
No amount of “support” or “punishment” will change that.
Taking away or reducing disability benefits won’t change that.
All it’ll do is kill them.
If someone is unable to work…
They’re unable to work.
No amount of “support” or “punishment” will change that.
Taking away or reducing disability benefits won’t change that.
All it’ll do is kill them.
Reposted by Something Chronic
Nigel Farage to promise business deregulation.
Translation - Human, employment, consumer, environmental rights will be thrashed. Real wage cuts. Corporate abuses, profiteering unchecked.
Pledge to cut govt spending - cut pensions/benefits. impose austerity. Don't be old, poor, sick, disabled.
Translation - Human, employment, consumer, environmental rights will be thrashed. Real wage cuts. Corporate abuses, profiteering unchecked.
Pledge to cut govt spending - cut pensions/benefits. impose austerity. Don't be old, poor, sick, disabled.
Nigel Farage to promise business deregulation in economic policy speech
Reform UK leader to set out ‘pro-entrepreneurship’ agenda while rowing back on tax cuts pledge
www.theguardian.com
November 3, 2025 at 8:50 AM
Nigel Farage to promise business deregulation.
Translation - Human, employment, consumer, environmental rights will be thrashed. Real wage cuts. Corporate abuses, profiteering unchecked.
Pledge to cut govt spending - cut pensions/benefits. impose austerity. Don't be old, poor, sick, disabled.
Translation - Human, employment, consumer, environmental rights will be thrashed. Real wage cuts. Corporate abuses, profiteering unchecked.
Pledge to cut govt spending - cut pensions/benefits. impose austerity. Don't be old, poor, sick, disabled.
A horrible thing about these benefits cuts proposals, is that we end up in a situation where the best possible case scenario is that nothing changes and we continue with the grossly unfair, harmful system…
We can never even consider true equity.
We can never even consider true equity.
November 3, 2025 at 8:55 AM