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
1 of 9
My #SevereME Christmas
* All day mostly alone
* No TV, music or twinkly lights due to extreme sensory sensitivities
* I won’t be able to see anyone except my husband (also my caregiver) as I don’t have enough energy to interact with them. We’ll mostly sign for the things I need …
My #SevereME Christmas
* All day mostly alone
* No TV, music or twinkly lights due to extreme sensory sensitivities
* I won’t be able to see anyone except my husband (also my caregiver) as I don’t have enough energy to interact with them. We’ll mostly sign for the things I need …
Reposted by Something Chronic
Having the reality of your illness denied “is almost as bad as the actual physical symptoms themselves.”
Ed Yong, speaking about #LongCovid patients being disbelieved and dismissed, and how gender and racial bias affect their care.
Ed Yong, speaking about #LongCovid patients being disbelieved and dismissed, and how gender and racial bias affect their care.
September 16, 2026 at 11:35 AM
Having the reality of your illness denied “is almost as bad as the actual physical symptoms themselves.”
Ed Yong, speaking about #LongCovid patients being disbelieved and dismissed, and how gender and racial bias affect their care.
Ed Yong, speaking about #LongCovid patients being disbelieved and dismissed, and how gender and racial bias affect their care.
Reposted by Something Chronic
Master post of each talk re: the Stanford #MECFS Community Symposium: 🧪
Talk 1: bsky.app/profile/exce...
Talk 1: bsky.app/profile/exce...
Todd Davenport from Uni of the Pacific is up first!
September 11, 2026 at 5:32 PM
Master post of each talk re: the Stanford #MECFS Community Symposium: 🧪
Talk 1: bsky.app/profile/exce...
Talk 1: bsky.app/profile/exce...
Reposted by Something Chronic
Attending the Community Symposium on the Molecular Basis of ME/CFS Stanford University.
Ron Davis says this symposium has been "the best meeting I have been to for ME/cfs." The previous days are confidential but today is open to the community. It will be recorded & shared!
@openmedf.bsky.social
Ron Davis says this symposium has been "the best meeting I have been to for ME/cfs." The previous days are confidential but today is open to the community. It will be recorded & shared!
@openmedf.bsky.social
September 11, 2026 at 3:11 PM
Attending the Community Symposium on the Molecular Basis of ME/CFS Stanford University.
Ron Davis says this symposium has been "the best meeting I have been to for ME/cfs." The previous days are confidential but today is open to the community. It will be recorded & shared!
@openmedf.bsky.social
Ron Davis says this symposium has been "the best meeting I have been to for ME/cfs." The previous days are confidential but today is open to the community. It will be recorded & shared!
@openmedf.bsky.social
Reposted by Something Chronic
And now here's a trial of the Lightning Process for Long Covid from Canada's McMaster University. This stuff never ends...
virology.ws/2026/08/22/t...
virology.ws/2026/08/22/t...
Trial By Error: Canada's McMaster University Launches Trial of Lightning Process for Long Covid | Virology Blog
By David Tuller, DrPH McMaster University in Hamilton, Ontario, has launched a clinical trial of the Lightning Process (LP), a well-known “mind-body” interv ...
virology.ws
August 22, 2026 at 5:48 PM
And now here's a trial of the Lightning Process for Long Covid from Canada's McMaster University. This stuff never ends...
virology.ws/2026/08/22/t...
virology.ws/2026/08/22/t...
Reposted by Something Chronic
A study of The Switch, New Zealand's version of the Lightning Process, has generated some meaningless results--yet the paper suggests the findings are so robust that it "could be argued" that no RCT is needed to recommend the intervention. Hm.
virology.ws/2026/09/09/t...
virology.ws/2026/09/09/t...
Trial By Error: A Study of The Switch, New Zealand's Homegrown Version of the Lightning Process, Yields Meaningless Findings | Virology Blog
By David Tuller, DrPH The Switch is a New Zealand variant of the Lighting Process, the so-called “mind-body” intervention created by a Phil Parker, a Britis ...
virology.ws
September 9, 2026 at 1:45 PM
A study of The Switch, New Zealand's version of the Lightning Process, has generated some meaningless results--yet the paper suggests the findings are so robust that it "could be argued" that no RCT is needed to recommend the intervention. Hm.
virology.ws/2026/09/09/t...
virology.ws/2026/09/09/t...
Huge thank you to Jaime, Scientific Director of ME Action, for reporting on the #ME/CFS Stanford Community Symposium live for us all!
If you’re able, you can follow along below for invaluable info about where ME research is currently at!
(I can’t at mo but will come back to read when I’m able!) 💙
If you’re able, you can follow along below for invaluable info about where ME research is currently at!
(I can’t at mo but will come back to read when I’m able!) 💙
Wearing my Hope Springs Eternal shirt as we head into the Stanford Community Symposium. See you there!
September 11, 2026 at 4:39 PM
Huge thank you to Jaime, Scientific Director of ME Action, for reporting on the #ME/CFS Stanford Community Symposium live for us all!
If you’re able, you can follow along below for invaluable info about where ME research is currently at!
(I can’t at mo but will come back to read when I’m able!) 💙
If you’re able, you can follow along below for invaluable info about where ME research is currently at!
(I can’t at mo but will come back to read when I’m able!) 💙
Reposted by Something Chronic
This one trick eugenicist asshole is so farcical - or he would be if he wasn't so fucking vile.
Our government's reliance upon him so. fucking. blatant.
He did exactly the same when toxic gas was released at heathrow over 20 years later.
He was just as wrong, but the article is still up ofc.
Our government's reliance upon him so. fucking. blatant.
He did exactly the same when toxic gas was released at heathrow over 20 years later.
He was just as wrong, but the article is still up ofc.
September 11, 2026 at 12:46 PM
This one trick eugenicist asshole is so farcical - or he would be if he wasn't so fucking vile.
Our government's reliance upon him so. fucking. blatant.
He did exactly the same when toxic gas was released at heathrow over 20 years later.
He was just as wrong, but the article is still up ofc.
Our government's reliance upon him so. fucking. blatant.
He did exactly the same when toxic gas was released at heathrow over 20 years later.
He was just as wrong, but the article is still up ofc.
Reposted by Something Chronic
🧵
Impact of cognitive dysfunction in ME/CFS from ME Research UK
Careers are impacted, cherished hobbies become exhausting, and relationships grow strained.
www.meresearch.org.uk/the-experien...
#BrainFog #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
#MyalgicE #CFSME
1/
Impact of cognitive dysfunction in ME/CFS from ME Research UK
Careers are impacted, cherished hobbies become exhausting, and relationships grow strained.
www.meresearch.org.uk/the-experien...
#BrainFog #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
#MyalgicE #CFSME
1/
September 6, 2026 at 3:48 PM
🧵
Impact of cognitive dysfunction in ME/CFS from ME Research UK
Careers are impacted, cherished hobbies become exhausting, and relationships grow strained.
www.meresearch.org.uk/the-experien...
#BrainFog #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
#MyalgicE #CFSME
1/
Impact of cognitive dysfunction in ME/CFS from ME Research UK
Careers are impacted, cherished hobbies become exhausting, and relationships grow strained.
www.meresearch.org.uk/the-experien...
#BrainFog #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
#MyalgicE #CFSME
1/
Reposted by Something Chronic
"While caring for a husband with early-stage dementia they pushed through relentlessly & ended up totally bed-bound.Their message to the group was to respect your own limits & stay tuned in to your body,because the cost of caregiving can be losing the very capacity to help"
#PostExertionalMalaise
1/
#PostExertionalMalaise
1/
September 4, 2026 at 11:42 PM
"While caring for a husband with early-stage dementia they pushed through relentlessly & ended up totally bed-bound.Their message to the group was to respect your own limits & stay tuned in to your body,because the cost of caregiving can be losing the very capacity to help"
#PostExertionalMalaise
1/
#PostExertionalMalaise
1/
Reposted by Something Chronic
A big ask, no pressure & I know people have better things to do but if about 15-20 people buy this from Blackwell's in the next few hours it's likely I'd have the number 1 & 2 books in their chart & that might be enough to finally persuade an American publisher to get my books out over there...
2000+ Americans have bought this book on import from the UK. Many of them have told me they love it.
Meanwhile, the UK publishing industry: "I am sorry. We can't sell this book to an American audience. They will find it too British."
FREE worldwide delivery here:
blackwells.co.uk/bookshop/pro...
Meanwhile, the UK publishing industry: "I am sorry. We can't sell this book to an American audience. They will find it too British."
FREE worldwide delivery here:
blackwells.co.uk/bookshop/pro...
September 4, 2026 at 6:36 PM
A big ask, no pressure & I know people have better things to do but if about 15-20 people buy this from Blackwell's in the next few hours it's likely I'd have the number 1 & 2 books in their chart & that might be enough to finally persuade an American publisher to get my books out over there...
Reposted by Something Chronic
1) A new paper on ME/CFS is getting media attention: it's about how the chromosomes containing our DNA are folded. These 3D structures can influence the expression of genes.
Unfortunately, I don't think this study warrants all the attention...
Unfortunately, I don't think this study warrants all the attention...
September 4, 2026 at 7:59 AM
1) A new paper on ME/CFS is getting media attention: it's about how the chromosomes containing our DNA are folded. These 3D structures can influence the expression of genes.
Unfortunately, I don't think this study warrants all the attention...
Unfortunately, I don't think this study warrants all the attention...
Reposted by Something Chronic
latest update at justice4me.uk
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
September 4, 2026 at 3:37 PM
latest update at justice4me.uk
Reposted by Something Chronic
“Trial By Error: Patient Advocate Anil van der Zee @anilvanderzee.bsky.social Receives Dutch Royal Distinction” By David Tuller @davetuller1.bsky.social
virology.ws/2026/09/02/t...
#MyalgicEncephalomyelitis #MEcfs #CFS #PwME #SevereME
virology.ws/2026/09/02/t...
#MyalgicEncephalomyelitis #MEcfs #CFS #PwME #SevereME
September 2, 2026 at 11:26 AM
“Trial By Error: Patient Advocate Anil van der Zee @anilvanderzee.bsky.social Receives Dutch Royal Distinction” By David Tuller @davetuller1.bsky.social
virology.ws/2026/09/02/t...
#MyalgicEncephalomyelitis #MEcfs #CFS #PwME #SevereME
virology.ws/2026/09/02/t...
#MyalgicEncephalomyelitis #MEcfs #CFS #PwME #SevereME
Reposted by Something Chronic
Edzard Ernst @edzard.bsky.social , a German professor emeritus of Complementary Medicine, has written a short and critical article on his blog about a planned study in Canada on the alternative method Lightning Process as LC-treatment
edzardernst.com/2026/08/the-...
#LongCovid #MEcfs
1/
edzardernst.com/2026/08/the-...
#LongCovid #MEcfs
1/
September 1, 2026 at 7:23 PM
Edzard Ernst @edzard.bsky.social , a German professor emeritus of Complementary Medicine, has written a short and critical article on his blog about a planned study in Canada on the alternative method Lightning Process as LC-treatment
edzardernst.com/2026/08/the-...
#LongCovid #MEcfs
1/
edzardernst.com/2026/08/the-...
#LongCovid #MEcfs
1/
Reposted by Something Chronic
September 1, 2026 at 12:44 PM
Reposted by Something Chronic
Former Bournemouth MP and Veterans Minister Tobias Ellwood believes he was “directly lied to” by officials at the Ministry of Defence about its secret programme of human radiation experiments.
Here’s What They Don’t Want You To Know:
whattheydontwantyoutoknow.substack.com/p/ex-tory-mi...
Here’s What They Don’t Want You To Know:
whattheydontwantyoutoknow.substack.com/p/ex-tory-mi...
Ex-Tory minister tells of 'shame' over his role in Nuked Blood Scandal
Police expand their major crime review into cover-up allegations as former defence minister Tobias Ellwood says officials 'directly lied' to him
whattheydontwantyoutoknow.substack.com
August 24, 2026 at 1:41 PM
Former Bournemouth MP and Veterans Minister Tobias Ellwood believes he was “directly lied to” by officials at the Ministry of Defence about its secret programme of human radiation experiments.
Here’s What They Don’t Want You To Know:
whattheydontwantyoutoknow.substack.com/p/ex-tory-mi...
Here’s What They Don’t Want You To Know:
whattheydontwantyoutoknow.substack.com/p/ex-tory-mi...
Reposted by Something Chronic
These graphs show the scale of the neglect. In the 20 years before the pandemic, Sky News found just 2,007 new scientific publications on ME/CFS compared with nearly 45,000 on psoriasis and 114,000 on Parkinson’s.
August 28, 2026 at 12:13 PM
These graphs show the scale of the neglect. In the 20 years before the pandemic, Sky News found just 2,007 new scientific publications on ME/CFS compared with nearly 45,000 on psoriasis and 114,000 on Parkinson’s.
Reposted by Something Chronic
oh, NO
I really feel like it should be bigger news that fibreglass is in IV saline bags in the US.
This isn’t a situation where you might get a little sick.
Fibreglass going directly into your veins will kill you.
IV saline is used for almost every medical procedure.
This is unconscionable:
This isn’t a situation where you might get a little sick.
Fibreglass going directly into your veins will kill you.
IV saline is used for almost every medical procedure.
This is unconscionable:
Baxter Issues Voluntary Nationwide Recall for Two Lots of 0.9% Sodium Chloride Injection Due to Potential Presence of Particulate Matter
FOR IMMEDIATE RELEASE – AUG. 25, 2026 – DEERFIELD, Ill., Baxter International Inc. (NYSE:BAX) is voluntarily recalling two lots of 0.9% Sodium Chloride Injection due to the potential presence of parti...
www.fda.gov
August 28, 2026 at 12:20 PM
oh, NO
Reposted by Something Chronic
Pacing is not a true treatment, but rather an attempt to limit further deterioration - and anything but wellness. It frequently means adopting the most severe restrictions to one’s ADLs to avoid further rolling #PEM and a lowering of your baseline. #PwME must sacrifice their quality of life in
August 22, 2026 at 2:57 PM
Reposted by Something Chronic
Because the dwp isn't for *disabled people*
It's for keeping costs down.
It's for social murder & eugenics of the useless eaters
And unfortunately it is quite good at its job.
It's for keeping costs down.
It's for social murder & eugenics of the useless eaters
And unfortunately it is quite good at its job.
Why does the DWP keep imposing additional barriers that prevent disabled people from being able to positively engage with it?
The DWP is not accessible to many – defeating its own purpose
Why does the DWP keep imposing additional barriers that prevent disabled people from being able to positively engage with it?
www.thecanary.co
August 20, 2026 at 3:05 PM
Because the dwp isn't for *disabled people*
It's for keeping costs down.
It's for social murder & eugenics of the useless eaters
And unfortunately it is quite good at its job.
It's for keeping costs down.
It's for social murder & eugenics of the useless eaters
And unfortunately it is quite good at its job.
Reposted by Something Chronic
Casual reminder that the myth of “pulling yourself up by your bootstraps” is a cruel hoax designed to convince poor people from all walks of life that the injustices they face are a result of their own actions, rather than an oppressive system rigged against them.
August 18, 2026 at 11:01 PM
Casual reminder that the myth of “pulling yourself up by your bootstraps” is a cruel hoax designed to convince poor people from all walks of life that the injustices they face are a result of their own actions, rather than an oppressive system rigged against them.
Reposted by Something Chronic
I am happy to announce that I have become a patron of @transactualuk.bsky.social
August 19, 2026 at 8:47 AM
I am happy to announce that I have become a patron of @transactualuk.bsky.social
Reposted by Something Chronic
Now that @tessamunt.bsky.social
(chair of the APPG for #ME) has sent this initial letter to JamesFrith MP she plans to follow up with a series of letters on specific issues. She is working incredibly hard on behalf of #pwME and I’m so grateful.
(chair of the APPG for #ME) has sent this initial letter to JamesFrith MP she plans to follow up with a series of letters on specific issues. She is working incredibly hard on behalf of #pwME and I’m so grateful.
Congrats to James Frith MP, newly appointed as the Minister for Health Innovation, with responsibility for ME.
I’ve written to him on ME emphasising that given the numbers, and the length and extent of suffering, ME represents a significant burden at personal level, to society and to our economy.
I’ve written to him on ME emphasising that given the numbers, and the length and extent of suffering, ME represents a significant burden at personal level, to society and to our economy.
August 19, 2026 at 8:45 AM
Now that @tessamunt.bsky.social
(chair of the APPG for #ME) has sent this initial letter to JamesFrith MP she plans to follow up with a series of letters on specific issues. She is working incredibly hard on behalf of #pwME and I’m so grateful.
(chair of the APPG for #ME) has sent this initial letter to JamesFrith MP she plans to follow up with a series of letters on specific issues. She is working incredibly hard on behalf of #pwME and I’m so grateful.
Reposted by Something Chronic
“On BPS [BioPsychoSocial] & disease causation: George Davey Smith’s cautionary tale” by Prof Chris Ponting @cgatist.bsky.social
mecfsresearchreview.me/2026/08/11/o...
#MEcfs #PwME #CFS
mecfsresearchreview.me/2026/08/11/o...
#MEcfs #PwME #CFS
August 15, 2026 at 8:52 PM
“On BPS [BioPsychoSocial] & disease causation: George Davey Smith’s cautionary tale” by Prof Chris Ponting @cgatist.bsky.social
mecfsresearchreview.me/2026/08/11/o...
#MEcfs #PwME #CFS
mecfsresearchreview.me/2026/08/11/o...
#MEcfs #PwME #CFS
Reposted by Something Chronic
Just lodged a complaint about this. www.bbc.co.uk/contact/comp...
August 15, 2026 at 10:53 PM
Just lodged a complaint about this. www.bbc.co.uk/contact/comp...