Discover and read the best of Twitter Threads about #FIBRO
Most recents (16)
@madeleinedaisyr Alan Steere took out the legitimacy & decades of research & progress for #MECFS & #fibromyalgia in 90s. He had published they & #lymeDisease caused serious neuroImmune illness. For the 1st #lyme #vax, he took all 3 out, saying all were hysterical Womens’ non-illnesses instead 2/
@madeleinedaisyr Why did he (#bigPharma) take out #MEcfs & #Fibromyalgia along with #lymeDisease when the goal was to change #lyme medicine knowledge so they could approve Lyme testing they knew wouldn’t work? Cause all 3 are caused by the same thing. Lyme results in MECFS & #fibro 3/
@madeleinedaisyr A #stanford researcher was looking into markers for #MECFS (2015-2020ish) & was funded & all was good. AS SOON AS he added #lymeDisease into his #MECFS research, he was suddenly taken out in a scandal & I don’t believe he did what accused of. When added lyme-that a coincidence?4/
1/ Long delayed thread on Javid’s resignation + achieving root+branch @DHSCgovuk change, without perpetuating regulatory failure with unnecessary expendable gaps
2/ Unacceptable past conduct and misinformation versus the @DoctorsWithME professional association over the past 18 months and their impact on public health is also addressed
#MECFS #LongCovid
#MECFS #LongCovid
3/ This loooong + frank thread is split into two- but a line in the sand for
a) future assessments of how implementation goes over the years (hopefully flawlessly + without foreseeable gaps) and
b) for the record regarding irresponsible behaviour (in the second thread)
a) future assessments of how implementation goes over the years (hopefully flawlessly + without foreseeable gaps) and
b) for the record regarding irresponsible behaviour (in the second thread)
🧵
“Israeli finding may make hard-to-diagnose #fibromyalgia easy to confirm:The chronic pain condition can be detected based on analysis of gut microbiome,scientists say in peer-reviewed research,potentially paving way for objective diagnosis,treatment”
timesofisrael.com/israeli-findin…
1/
“Israeli finding may make hard-to-diagnose #fibromyalgia easy to confirm:The chronic pain condition can be detected based on analysis of gut microbiome,scientists say in peer-reviewed research,potentially paving way for objective diagnosis,treatment”
timesofisrael.com/israeli-findin…
1/
2/
“Many medical professionals have been eager for an objective diagnostic method [for #Fibromyalgia], both for practical reasons and also to rebuff those who doubt the genuineness of the condition”
#Fibro #FM #FMS
“Many medical professionals have been eager for an objective diagnostic method [for #Fibromyalgia], both for practical reasons and also to rebuff those who doubt the genuineness of the condition”
#Fibro #FM #FMS
3/
“researchers…say they have found biological markers. They report in the peer-reviewed journal Pain that they have identified patterns in the gut that could form the basis of an objective method to diagnose #fibromyalgia”
#Fibro #FMS #FM
“researchers…say they have found biological markers. They report in the peer-reviewed journal Pain that they have identified patterns in the gut that could form the basis of an objective method to diagnose #fibromyalgia”
#Fibro #FMS #FM
I was a clinical sports therapist. My degrees in Sports Coaching and Exercise Science. The Royal Colleges insistent claims that exercise is effective for ME are based on a "deconditioning theory" - Not the actual science that proves #pwME are exertion intolerant.
If graded exercise rehab worked for people with #MECFS then why is the recovery rate only 5%? If I could successfully rehabilitate clients post surgery, after years of immobility, chemo damage and serious injury, then why did the principles of GET leave me severly disabled?
I specialised in reversing chronic injuries and musculoskeletal pathologies not just for elite athletes but for children too. GET took away all available hrs I had on my feet to still do my job. And they claim we are just accessing the wrong services ...
Honestly? Many researchers mainly tap into their own self-sourced ideas. Very few really do the “field work” required to formulate the most interesting and relevant questions. The idea of researching patients without actually listening to patients is bonkers to me.
In reference to:
This is a large part of why the research is so slow. Yes, funding is an issue, but in the #MECFS community, major possible contributors to illness go discussed for 10, 20 years but no researcher touches them. I’m thinking of mold exposure and MCAS as big ones.
#Friday #fridaymood #weekend Kratom Red 🐉 Dragon Powder
krakenkratom.com/buy-red-dragon…
#Reddragonkratom #kratom #kratomreddragon
Kratom Red Dragon helps one feel more serene, tranquil and calm. Its soothing effect also helps you feel as if the remainders of your senses are enhanced.
krakenkratom.com/buy-red-dragon…
#Reddragonkratom #kratom #kratomreddragon
Kratom Red Dragon helps one feel more serene, tranquil and calm. Its soothing effect also helps you feel as if the remainders of your senses are enhanced.
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.
We should take some of the most replicated findings in #MECFS and study them in #longCOVID patients. Some of these findings, if also present in #longCOVID, *could* potentially imply avenues for symptom management or therapeutic treatment.
Here are a few that might be interesting:
1️⃣Low serum carnitine: me-pedia.org/wiki/Carnitine
2️⃣ Low natural killer cell function: me-pedia.org/wiki/Natural_k…
3️⃣ Elevated lactate (blood, brain): me-pedia.org/wiki/Lactic_ac…
4️⃣ Cerebral hypoperfusion: me-pedia.org/wiki/Brain#Blo…
1️⃣Low serum carnitine: me-pedia.org/wiki/Carnitine
2️⃣ Low natural killer cell function: me-pedia.org/wiki/Natural_k…
3️⃣ Elevated lactate (blood, brain): me-pedia.org/wiki/Lactic_ac…
4️⃣ Cerebral hypoperfusion: me-pedia.org/wiki/Brain#Blo…
I deeply relate to this. After almost dying of ❤️ failure from #Lyme & being told by 11 “top” docs that in spite of my tick bite, bullseye, & classic symptoms, I could not poss still have it after a short course of doxy. Well, I did. 1/
And after the 12th doc saved my life (thx @StevePhillipsMD), I wrote my story in @HuffPost. I didn’t think anyone would care. But they did. The editor called & asked me to keep writing about this scandal as so many ppl were reading my story. 2/ huffpost.com/entry/how-11-t…
So I kept writing and began hearing from people all over the world, including a nurse from Ghana, who used my story to guide them back to health. I even interviewed celebrities who had gone through it like Daryl Hall. 3/ m.huffpost.com/us/entry/us_11…
If I could wave a magic wand:
– we would prove that intracranial hypertension (as measured by ICP bolt) is common in our pt populations, more often than not w/ normal LP opening pressures, w/o papilledema
– we would prove that occult tethered cord is common and runs in families
– we would prove that intracranial hypertension (as measured by ICP bolt) is common in our pt populations, more often than not w/ normal LP opening pressures, w/o papilledema
– we would prove that occult tethered cord is common and runs in families
– we would learn whether we should untethether these kids as kids, if that might help them avoid the hell to come
– we would prove that you can get recurrent leaks that imaging will never catch
– we would prove that you can get recurrent leaks that imaging will never catch
I have been engaging with some people with functional neurological disorder (FND) diagnoses. FND is the new name for conversion disorder. They were upset about this thread and how it might stigmatize people with FND.
The last thing I would ever want to do is stigmatize other patients or disabled people. However, it's challenging to figure out how to talk about FND in a way that is not stigmatizing when misdiagnosis is *rampant* and *harmful.*
Furthermore, after digging into FND Hope’s website and list of symptoms (fndhope.org) I can only conclude that if these symptoms are being framed as FND symptoms and differential diagnoses of #MECFS, #EDS, #MCAS, #POTS...
1/This care partner's tale in 9 tweets.
Son 35 yrs. Undetected spondylolysthesis and other musculoskeletal issues uncovered at 13 yrs due primarily to onset of pain during a period of rapid growth.
Son 35 yrs. Undetected spondylolysthesis and other musculoskeletal issues uncovered at 13 yrs due primarily to onset of pain during a period of rapid growth.
2/ First emergency spine fusion at 15 yrs after 2 yrs of medical profession denying that kids have pain. Teens are an invisible health care population.
Columbine happened in this period.
Every teenage boy in America had a target on their forehead.
Pain became 'kid wants drugs"
Columbine happened in this period.
Every teenage boy in America had a target on their forehead.
Pain became 'kid wants drugs"
3/ Fusion failed. #FailedBackSurgerySyndrome
Blame the kid for failure to heal. Medical message: Shift the blame. Teach the kid that cure is his fault.
Teenage cutting, self-harm distracts from daily pain.
Back into surgical revision2 @ 16.
Blame the kid for failure to heal. Medical message: Shift the blame. Teach the kid that cure is his fault.
Teenage cutting, self-harm distracts from daily pain.
Back into surgical revision2 @ 16.
This study looked at 270 people with #fibro, a condition that receives even less funding than #mecfs and is still ridiculed by many MDs. 46% had spinal stenosis and 20% had Chiari malformation!! #Nightingales link.springer.com/article/10.100…
The authors conclude: “We recommend detailed neurological evaluation of patients with #fibromyalgia in order to exclude cervical myelopathy, a potentially treatable condition.” #Nightingales
There is a strong case right here that medicine is massively failing these patients by denying access to diagnosis and care *that it is already quite capable of providing.* #Nightingales
I’m starting a new hashtag, #Nightingales, specifically to connect people with #EDS #hEDS #MECFS #POTS #MCAS #FIBRO. However, all are welcome!
Why these diagnoses? The thesis is that they share either an underlying biological relationship (genetic, environmental, pathophysiological or otherwise) OR a nosological one: they are actually different but often confused for each other. #Nightingales
It’s my hope that by communicating across community, we can all become better informed advocates and allies; help each other find more accurate diagnosis and effective treatment; and discuss science + clinical approaches from an interdisciplinary perspective. #Nightingales
.@SarahbaxterSTM's argues that #fibromyalgia, #mecfs, #lupus, #depression, self-harming and #anorexia are caused by female ambition and fragility.
What's c. 1880 is new again.
thetimes.co.uk/article/kirsty…
What's c. 1880 is new again.
thetimes.co.uk/article/kirsty…
This is just so silly. In the 19th century, there was a panic in the medical profession (and among social commentators) about women becoming ill with neurological and "nervous" conditions because they were overworking their brains/nerves, which were naturally weaker than men's.
This “fact” was used to bolster the argument in favor of stopping women's formal education after age 16 and most certainly not letting them enroll in university.
