Discover and read the best of Twitter Threads about #fibro

Most recents (13)

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 ...
Read 18 tweets
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.
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.
Read 12 tweets
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? 🧵
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.
Read 21 tweets
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…
Read 25 tweets
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…
Read 16 tweets
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 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 understand the relationships between #MECFS #EDS #MCAS #POTS #Fibro, without which we will never be able to get to *prevention*
– every GP/PCP would know each of these diagnoses cold and could refer you to...actual specialists
Read 6 tweets
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...
Read 58 tweets
I was bitten by a #tick in 2011 & it's turned my worle upside down!
I was a practicing trial atty & am now on a walker.
I contracted E. Chaffeensis, Rickettsia of unknown et., & #Lyme.
I wasn't treated for 11 mos. By then, the tick bacteria had invaded my spinal fluid/brain.
Read 12 tweets
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.
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"
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.
Read 9 tweets
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
Read 11 tweets
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
Read 12 tweets
.@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…
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.
Read 26 tweets

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