Wow, 10/10 no notes. #Care4Complex #Dysautonomia
Thanks to Dr Sanjay Gupta's fb feed for this cartoon. #pwME #LongCovidME
September 29, 2026 at 2:55 PM
Wow, 10/10 no notes. #Care4Complex #Dysautonomia
There is just one never-changing rule for this community: you always end up being abandoned. #mecfs #pais #longcovid #care4complex
February 14, 2025 at 6:19 PM
There is just one never-changing rule for this community: you always end up being abandoned. #mecfs #pais #longcovid #care4complex
#PatientsToo #MedicalMisogyny #Coercion #ODSP #MAiDtrack2 #DignityInLiving #Care4Complex #MillionsMissing
Take a step back and consider why you won't believe us.
Ask yourself if there might be a reason we don't file official complaints.
If there might be a reason they are so hard to win.
Ask yourself why you're more interested in protecting a system than individual lives.
Ask yourself if there might be a reason we don't file official complaints.
If there might be a reason they are so hard to win.
Ask yourself why you're more interested in protecting a system than individual lives.
June 15, 2025 at 10:32 PM
#Care4Complex Rant du jour:
What passes as medical care for complex illness in Vancouver includes “group medical visits” (paid for by MSP!) like:
- Improving Parasympathetic Tone by Group Singing - What's the Science
- Change your Brain: Using Polyvagal theory to regulate the nervous system
What passes as medical care for complex illness in Vancouver includes “group medical visits” (paid for by MSP!) like:
- Improving Parasympathetic Tone by Group Singing - What's the Science
- Change your Brain: Using Polyvagal theory to regulate the nervous system
May 8, 2026 at 1:44 AM
#Care4Complex Rant du jour:
What passes as medical care for complex illness in Vancouver includes “group medical visits” (paid for by MSP!) like:
- Improving Parasympathetic Tone by Group Singing - What's the Science
- Change your Brain: Using Polyvagal theory to regulate the nervous system
What passes as medical care for complex illness in Vancouver includes “group medical visits” (paid for by MSP!) like:
- Improving Parasympathetic Tone by Group Singing - What's the Science
- Change your Brain: Using Polyvagal theory to regulate the nervous system
When I tell you BC medical care is dangerously rife with pseudoscience, especially when it comes to infectious diseases, and post-viral and complex illness, this is what I mean. It is not a safe place to live, and especially not a safe place to get sick. #bcpoli #Care4Complex
My Toronto Star Op-Ed last week pointed the finger at physician thinking & physician culture to explain why they just won't let go of certain beliefs even when drowning in evidence to the contrary.
Today the Globe and Mail provided a tragically shining example, quoting Dr. Srinivan Murthy ...
1/10
Today the Globe and Mail provided a tragically shining example, quoting Dr. Srinivan Murthy ...
1/10
June 4, 2026 at 1:42 PM
When I tell you BC medical care is dangerously rife with pseudoscience, especially when it comes to infectious diseases, and post-viral and complex illness, this is what I mean. It is not a safe place to live, and especially not a safe place to get sick. #bcpoli #Care4Complex
Wow. This article on involuntary MH care I saw via @brishti.bsky.social's newsletter is ...something. I don't even know what to highlight. Read the "Findings" section at minimum. (Also I wish someone would do a study like this on #Care4Complex illness in #BCHealth.) journals.plos.org/plosone/arti...
“Backed into a Corner”: Lived experiences of receiving and providing involuntary psychiatric treatment under British Columbia’s Mental Health Act
British Columbia’s Mental Health Act permits the involuntarily detention and treatment of individuals who meet specific criteria. Over the past 15 years, British Columbia has seen an increasing trend ...
journals.plos.org
August 7, 2026 at 8:36 PM
Wow. This article on involuntary MH care I saw via @brishti.bsky.social's newsletter is ...something. I don't even know what to highlight. Read the "Findings" section at minimum. (Also I wish someone would do a study like this on #Care4Complex illness in #BCHealth.) journals.plos.org/plosone/arti...
A fellow Vancouver #Care4Complex patient who suffered serious harm + whose life is being put at risk yet again by the incompetence + negligence of the BC medical system was on @citynewsvancouver.bsky.social last night. This is the NORM, not an exception. #bcpoli vancouver.citynews.ca/video/2026/0...
Woman suffering from rare disease faces starvation as B.C. denies crucial formula
Lauren Paulsen, a Vancouver woman, says she is facing starvation in slow motion and the province is not helping. She has a rare disease that, coupled with a broken jaw, has left her unable to eat almo...
vancouver.citynews.ca
June 9, 2026 at 6:11 PM
A fellow Vancouver #Care4Complex patient who suffered serious harm + whose life is being put at risk yet again by the incompetence + negligence of the BC medical system was on @citynewsvancouver.bsky.social last night. This is the NORM, not an exception. #bcpoli vancouver.citynews.ca/video/2026/0...
This is so, so important - another fantastic study proving the role of antibodies and autoimmunity in a cohort of Long Covid. Just like other forms of post-viral neuro disease, this means for this patient phenotype, there is an excellent likelihood of responding to immunotherapy. #Care4Complex
Wonderful day for a new #LongCOVID paper! Thanks to an incredible collaboration with @VirusesImmunity and brilliant work done by @keylas3, we studied the effects of injecting antibodies taken from people with LC into mice compared with what happened
www.sciencedirect.com/science/arti...
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www.sciencedirect.com/science/arti...
1/
May 29, 2026 at 3:17 AM
This is so, so important - another fantastic study proving the role of antibodies and autoimmunity in a cohort of Long Covid. Just like other forms of post-viral neuro disease, this means for this patient phenotype, there is an excellent likelihood of responding to immunotherapy. #Care4Complex
Sooo…. was it one of you who asked the question to Dr. Goodman on the zoom tonight about #NeuroSjogrens vs. #MECFS?? Whoever it was, BLESS YOU. ⭐️ I wish I had been recording that Q+A. So important - I wish we didn't have to wait 3 weeks to get the video! #Care4Complex
April 10, 2026 at 1:06 AM
Sooo…. was it one of you who asked the question to Dr. Goodman on the zoom tonight about #NeuroSjogrens vs. #MECFS?? Whoever it was, BLESS YOU. ⭐️ I wish I had been recording that Q+A. So important - I wish we didn't have to wait 3 weeks to get the video! #Care4Complex
The perils of oversimplification is such an important concept, especially when assessing the failures in #Care4Complex illnesses. Most humans love simple answers, but they often do not work for complex problems - we can, and must be willing to, do better.
A good diagnosis covers a lot of ground, citing multiple variables. Then a detailed roadmap for fighting the problem can be drawn.
Reducing complexity to one variable will likely create blind spots, reducing the possibility of successful recovery.
derekberes.substack.com/p/the-single...
Reducing complexity to one variable will likely create blind spots, reducing the possibility of successful recovery.
derekberes.substack.com/p/the-single...
The single cause fallacy
Simple answers rarely address complex problems
derekberes.substack.com
March 16, 2026 at 6:01 PM
The perils of oversimplification is such an important concept, especially when assessing the failures in #Care4Complex illnesses. Most humans love simple answers, but they often do not work for complex problems - we can, and must be willing to, do better.
Everything I predicted 5 years ago is finally being proved. It was obvious to most patients and doctors already in this space pre-Covid, but the wider medical and even patient communities have been resistant to the idea that this is heavily autoimmune. #Care4Complex
"Autoantibodies implicated as drivers of long COVID in new study"
"What is really striking," say both co-leads of the study, "is that three independent research groups have recently reported similar findings..."
medicalxpress.com/news/2026-03...
"What is really striking," say both co-leads of the study, "is that three independent research groups have recently reported similar findings..."
medicalxpress.com/news/2026-03...
Autoantibodies implicated as drivers of long COVID in new study
A growing body of evidence suggests that long COVID (or post-COVID syndrome), a condition affecting more than 10% of people after a SARS-CoV-2 infection, may be driven by the immune system turning aga...
medicalxpress.com
March 24, 2026 at 4:50 PM
Everything I predicted 5 years ago is finally being proved. It was obvious to most patients and doctors already in this space pre-Covid, but the wider medical and even patient communities have been resistant to the idea that this is heavily autoimmune. #Care4Complex
More negligence! Diagnosed w/MECFS despite high ANA (SSA-neg so they say no Sjogren’s, which is 🤦♀️), low Complement, clear features of autonomic neuropathy, low HPA/hypocorticolism. Responds to immunoadsorption but doesn’t get IVIG, + no cortisol replacement. Gets sicker and does #MAID. #Care4Complex
Severe ME/CFS Leading to Assisted Suicide in a Patient in Her Late 30s: A Case Report
cureus.com/articles/487...
A case report detailing the failure of medical care in a young Swiss woman, that resulted in the patient deteriorating to an extremely severe level of ME/CFS.
#MEcfs #CFS #PwME
cureus.com/articles/487...
A case report detailing the failure of medical care in a young Swiss woman, that resulted in the patient deteriorating to an extremely severe level of ME/CFS.
#MEcfs #CFS #PwME
Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Leading to Assisted Suicide in a Patient in Her Late 30s: A Case Report
A patient in her late 30s developed severe myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) following an Epstein-Barr virus infection. No distinct autoimmune or autoinflammatory disorder co...
cureus.com
June 1, 2026 at 1:01 PM
More negligence! Diagnosed w/MECFS despite high ANA (SSA-neg so they say no Sjogren’s, which is 🤦♀️), low Complement, clear features of autonomic neuropathy, low HPA/hypocorticolism. Responds to immunoadsorption but doesn’t get IVIG, + no cortisol replacement. Gets sicker and does #MAID. #Care4Complex
#NeuroSjogrens #Dysautonomia
#Care4Complex ....
Gestern bin ich "gestolpert".
Ich sah einen Post einer Expertin, die einen "Account" auf einen Fehler aufmerksam machte.
Nein, man hat sich nicht über die Klarstellung gefreut 😭
Jetzt wurde ich blockiert.
Mein Hinweis
"okay, vielleicht weißt
#Care4Complex ....
Gestern bin ich "gestolpert".
Ich sah einen Post einer Expertin, die einen "Account" auf einen Fehler aufmerksam machte.
Nein, man hat sich nicht über die Klarstellung gefreut 😭
Jetzt wurde ich blockiert.
Mein Hinweis
"okay, vielleicht weißt
January 9, 2025 at 9:55 PM
#NeuroSjogrens #Dysautonomia
#Care4Complex ....
Gestern bin ich "gestolpert".
Ich sah einen Post einer Expertin, die einen "Account" auf einen Fehler aufmerksam machte.
Nein, man hat sich nicht über die Klarstellung gefreut 😭
Jetzt wurde ich blockiert.
Mein Hinweis
"okay, vielleicht weißt
#Care4Complex ....
Gestern bin ich "gestolpert".
Ich sah einen Post einer Expertin, die einen "Account" auf einen Fehler aufmerksam machte.
Nein, man hat sich nicht über die Klarstellung gefreut 😭
Jetzt wurde ich blockiert.
Mein Hinweis
"okay, vielleicht weißt
Und es ist immer klarer messbar, von Gefäßschaden etc ganz abgesehen.
Wissenschaft wird nicht durch Masse besser sondern durch Fokus
@DaniBeckman
“ME patients had elevated levels of lactate, #LongCovid patients had lowered levels of total choline”
x.com/arianek/stat...
Wissenschaft wird nicht durch Masse besser sondern durch Fokus
@DaniBeckman
“ME patients had elevated levels of lactate, #LongCovid patients had lowered levels of total choline”
x.com/arianek/stat...
ArianeK 💜 #Care4Complex (she/her) on X: "More evidence reminding us not to conflate ME and LC, despite the overlapping symptoms and comorbidities. Neuroscientist @DaniBeckman’s talk reviewing her research findings - there are neurological changes in both ME and LC, but it’s different, they are not the same changes. https://t.co/OHCmHMqjV3" / X
More evidence reminding us not to conflate ME and LC, despite the overlapping symptoms and comorbidities. Neuroscientist @DaniBeckman’s talk reviewing her research findings - there are neurological changes in both ME and LC, but it’s different, they are not the same changes. https://t.co/OHCmHMqjV3
x.com
November 7, 2025 at 4:30 PM
Und es ist immer klarer messbar, von Gefäßschaden etc ganz abgesehen.
Wissenschaft wird nicht durch Masse besser sondern durch Fokus
@DaniBeckman
“ME patients had elevated levels of lactate, #LongCovid patients had lowered levels of total choline”
x.com/arianek/stat...
Wissenschaft wird nicht durch Masse besser sondern durch Fokus
@DaniBeckman
“ME patients had elevated levels of lactate, #LongCovid patients had lowered levels of total choline”
x.com/arianek/stat...
Great #Care4Complex thread on (autoimmune) antibodies in post-viral and complex illness, with bonus mentions of Sjogren’s and HLA variants!
A thread today about Immunoglobulin G (IgG) antibodies to various pathogens and why they seem to be elevated a lot in people with #LongCOVID, #MECFS, chronic #lyme/tick- and vector-borne illnesses and other complex chronic illnesses. First, let's start basic: what is IgG?
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June 13, 2026 at 12:32 PM
Great #Care4Complex thread on (autoimmune) antibodies in post-viral and complex illness, with bonus mentions of Sjogren’s and HLA variants!
I think we #Care4Complex patients need to start refusing to fill in leading, biased anxiety/depression/pain questionnaires. Asking a sick person if they’re concerned about their future or their illness affects their functioning, then psychologising their illness is abuse.
May 6, 2026 at 7:56 PM
I think we #Care4Complex patients need to start refusing to fill in leading, biased anxiety/depression/pain questionnaires. Asking a sick person if they’re concerned about their future or their illness affects their functioning, then psychologising their illness is abuse.