Discover and read the best of Twitter Threads about #ChronicLyme
Most recents (8)
So many people are so attached to the malingerer narrative. In a BBC 2013 “Great Lives” podcast on Florence Nightingale the museum professional who chose her describes the statistician and sanitary reformer as “someone who it seems to me almost revels in her suffering’ (1/x)
Mark Bostridge, who wrote the 2008 Nightingale biography responds (bless him), “I think that’s unfair, because she was seriously ill and for decades historians and biographers portrayed Nightingale as a malingerer…” (2/x)
Bostridge mentions chronic brucellosis, brings up spondylitis, and both the museum professional and the host express skepticism. (3/x)
That’s exactly right.
It happened to me with #Lyme. I was one of the lucky ones who got the right diagnosis (after 5 months/ 12 docs!) & got better.
Many don’t. #LongCovid #ChronicLyme
It happened to me with #Lyme. I was one of the lucky ones who got the right diagnosis (after 5 months/ 12 docs!) & got better.
Many don’t. #LongCovid #ChronicLyme
I was super healthy. At the prime of my life & music career.
Got a tick bite (likely, in my sleep!) at a wedding in NJ.
Initial flu-like illness lasted 2-3 days. Then I saw rash on shoulder around a tiny bite.
Went to urgent care & they Rx’ed 3 weeks antibiotics.
Got a tick bite (likely, in my sleep!) at a wedding in NJ.
Initial flu-like illness lasted 2-3 days. Then I saw rash on shoulder around a tiny bite.
Went to urgent care & they Rx’ed 3 weeks antibiotics.
I was told I caught the Lyme infection early so not to worry.
I took the antibiotics and felt ok. This was in July. Went on with my life.
Woke up one morn in Oct. & all Hell broke loose. Swollen breast, severe pain, severe arm weakness, severe insomnia/ anxiety/ ahnedonia.
I took the antibiotics and felt ok. This was in July. Went on with my life.
Woke up one morn in Oct. & all Hell broke loose. Swollen breast, severe pain, severe arm weakness, severe insomnia/ anxiety/ ahnedonia.
#1. The Feds on the #TBDWG have controlled every recommendation & every sentence of the Report to Congress for 6 years. This #FAC was THE chance for #lyme truth to be disclosed after 40 YEARS but the Feds’ role was to keep the false controversy going. 2/
#TBDWG & other efforts that R actually controlled by the Feds like #lymeX (it IS #HHS,not a non-profit) recommend new #lyme efforts but it’s recommended all those efforts be controlled by the very agencies (& In Turn individuals) that reversed #lymeDisease facts & made test fail.
#lymeDisease medicine will NOT be allowed to progress until the corrupt & FALSE #lyme controversy is exposed. It was known in the 1980s & 90s that lyme was a serious & disabling illness that causes neurological, immune & neuroimmune illness & an antibody test=false negatives. 4/
PART I: Connective Tissue & Immune System
#LongCOVID is shedding light on long-ignored, physiological aspects of Post-Viral syndromes (e.g. #MECFS)
One fascinating area is the role of connective tissue (and Ehler Danlos Syndrome #EDS) in their pathophysiologies.
1/
#LongCOVID is shedding light on long-ignored, physiological aspects of Post-Viral syndromes (e.g. #MECFS)
One fascinating area is the role of connective tissue (and Ehler Danlos Syndrome #EDS) in their pathophysiologies.
1/
Anyone following conversations in the #LongCOVID community might be surprised by the oversized prominence that #EDS plays.
Take @meghanor piece in @TheAtlantic where #EDS community is described working w/ #MECFS #ChronicLyme communities on LongCOVID...
theatlantic.com/magazine/archi…
Take @meghanor piece in @TheAtlantic where #EDS community is described working w/ #MECFS #ChronicLyme communities on LongCOVID...
theatlantic.com/magazine/archi…
@meghanor @TheAtlantic ... or the discussion that @polybioRF @microbeminded2 has w/ @RuhoyMD about potential link b/w connective tissue laxity & #MECFS.
In this video, the discussion focuses on craniocervical instability as a possible explanation for neurological symptoms.
In this video, the discussion focuses on craniocervical instability as a possible explanation for neurological symptoms.
🚨Attention medics.🚨 An important thread on #MyalgicEncephalomyelitis Forget what you think you know. It is not psychosomatic. These pts are desperately physically unwell, likely with a chronic infection. #MedTwitter #MedEd #TeamGP 🧵 1/
Bedbound & housebound, they make up #millionsmissing. They maybe out of sight, but they are never far from my mind.
Neglect of #ME is the biggest medical scandal of the 21st century. The medical community will soon look back on their treatment of #pwME with horror & shame./2
Neglect of #ME is the biggest medical scandal of the 21st century. The medical community will soon look back on their treatment of #pwME with horror & shame./2
But some Drs maybe forgiven for their ignorance. #ME fails to feature on the UK medical curriculum and as such, awareness & understanding is low.
The condition has also been highly stigmatised & erroneously - but deliberately - labelled psychological./3
The condition has also been highly stigmatised & erroneously - but deliberately - labelled psychological./3
An update as I never properly followed this up: My wife, Marjolein, won her benefits back after losing them last year. With amazing support from a kickass lawyer (who should wear a cape) we challenged @UWVnl & won. The judge found their medical assessment to be "unlawful". #mecfs
And in July 2021, her basic sick pay benefits were restored. However, we decided we don't want to go through this humiliating/ exhausting/ inhumane process again & end up in court every year. We can't do it. So, we appealed for longer term support & go to court in May. Again.
My wife left home three times last year. Her life & its geography is now basically 2 rooms. I directly link the uncertainty, anxiety & stress of this sick pay benefits process to her health worsening. Let me put that another way: the Dutch govt & @UWVnl is harming her health.
“The reality of the Long Hauler - and of all infection initiated chronically ill persons (#MECFS, #POTS, #ChronicLyme, etc.)…includes an external world that inflicts pain onto our already painful internal one." 🧵 & artwork by BP Vice Pres. Lauren Nichols instagram.com/p/CXpM1gErbxR/
The external world of the #LongCOVID patient
In the medical community, #LongCOVID patients are at times fortunate to find doctors and researchers who validate their symptoms and seek answers, while others dismiss or deny their experiences.
Different groups have FOIAed this #Lyme crooks email over the years. On the surface it is appalling, but what does it really mean? “This battle cannot be won on a scientific front...we need reinforcements from outside our field.”
In short, it means they’re guilty. Of what? 🧵
In short, it means they’re guilty. Of what? 🧵
They rigged the #LymeDisease case definition to conform to diagnostics that were designed to detect a small minority of cases that are genetically predisposed to produce a strong antibody response.
Allen Steere had done a ton of research on the association of various HLAs with different antibody responses in #LymeDisease. Everyone knew by the early 1990s that the people with an arthritic knee had a strong immune response but weren’t very sick.
