Discover and read the best of Twitter Threads about #Fibromyalgia

Most recents (24)

@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/
Read 7 tweets
Everything on this image is directly linked to magnesium deficiency. 🧵 a thread, with a link for every single condition in the same order. There's 2 webpages about ADHD & the real cause of autism. (it's from hypothyroidism during pregnancy.) I ended with info for kidney stones.
“Mg deficiency afflicts 90% of all people w/ ADHD & w/ symptoms like restlessness, poor focus, irritability, sleep problems, & anxiety. These symptoms lessen or vanish 1 month after supplementation starts. Mg can prevent or reverse ADHD drug side effects.”
“Nutrient deficiencies have not been shown to cause ADHD in children, but studies in children with ADHD have shown deficiencies in some nutrients such as ★★magnesium and vitamin D★★ [12, 13].”…
Read 20 tweets
#Fibromyalgia has "no known causes"

It affects mostly middle aged women.

It's a relatively recent illness.

There's no cure.

Pain symptoms throughout the body are excruciating when waking up, warding off during the day.
2/3 Stats show that around 66% of #TargetedIndividuals are middle-aged women.

DEW torturers rely on the body's stationary condition while sleeping to perpetrate precise, ruthless attacks on TI bodies

Waking up for TIs feels like what journals describe as #Fibromyalgia symptoms
3/3 If #Fibromyalgia patients were to get screened and test positive for #HavanaSyndrome, the 'mystery' of the former's causes will be solved since #NAS already documented the causes for the latter.

Is fibromyalgia a real illness or the effects of DEW attacks?

Read 3 tweets
@teaze_r @RedactedMom 1-) hEDS can not be detected w/ a genetic test. My child has an EDS gene in which I am positive that I am the one who passed it down. However they dismissed that gene mutation as a Variation of Unknown Significance, (VUS).
However scientists appear to be way ahead of that...
@teaze_r @RedactedMom 2-) ...geneticist because when I looked it up, having 1 copy of that mutated gene CAN cause problems. The mutation that I am talking about is a mutation in the COL12a1 gene.…
@teaze_r @RedactedMom 3-)... My 1st sign of having this mutation was Clinical Carpal Tunnel Syndrome. My 2nd sign was Plantar Facitus, however at the time that I started having those problems I didn't recognize either problem as being a part of something as a whole. The next sign that I can think...
Read 21 tweets
Sneak peek at our latest #LongCovid preprint about microclot detection using imaging flow cytometry

By Simone Turner, Jaco Laubscher, @resiapretorius & @dbkell

These are 1st results from the instrument YOU funded by donating to @givewithkernls


Grey columns are using brightfield microscopy; black are using Thioflavin T

See the difference in size between #LongCovid & control microclots

There were statistically significant differences in mean size, number & other variables

More in the paper!

2/n Image
Why is this important?
Because flow cytometry is already accessible in clinical settings, unlike fluorescence microscopy which is mainly a research tool.

Big thanks to @gezmedinger @HarryLeeming @fearnley_k @Geraint6Jones @clarejdaly @loscharlos @ShaneyWright @j_b_kennedy 3/n
Read 7 tweets
The establishment creates this problem by first denying the disease, creating a vacuum that quickly fills up with untested treatments & questionable cures. Then they go about trashing their victims who desperately need relief, and the doctors who are willing to treat.
#BTDT #Lyme
It is both infuriating & heart wrenching to watch this scene play out again, with some of the same establishment players engaging in narrative control. Go to ~48:00 for IDSA creep Paul Auwaerter’s word salad tossed at Congress, thx to my friend @PowerOfNeo…
That they have denied, conflated & confused for DECADES #LymeDisease #ME #mecfs #cfs #fibromyalgia and passed them off as psychiatric, and now are doing the same with #LongCovid, should tell you all you need to know about #PublicHealth’s intentions.
Read 4 tweets
To those intent on psychologising #LongCovid & #MECFS because ‘there is no biomarker’- let me tell you something as a senior Dr. Many diseases don’t have biomarkers & diagnosis is clinical. Take asthma for example. Symptoms vary between patients. 1/n
Many patients have abnormal exhaled nitric oxide (FeNO) & histamine challenge tests- some don’t. Yet if the patient’s symptoms & signs fit with asthma, we have no hesitation in making the diagnosis. 2/n
There is the well-known example of multiple sclerosis. Many deemed it psychogenic because there was no lab or radiology test that was diagnostic. Until of course the MR scan was invented. 3/n
Read 8 tweets
I am fascinated w/ the potential for sodium bicarbonate in #MECFS + #Fibromyalgia.
Used by athletes + studied for decades + there is OK evidence of weak performance gains
@remissionbiome is interested in myalgia, muscle soreness, DOMS.
1/n Image
Four things have really captured my attention. A new topical delivery version that makes the GI effects a non-issue. 2. Vagal nerve connections. 3. DOMS (delayed-onset muscle soreness) is reduced. 4. direct lactate effects are seen (very common in #MECFS). 2/n
Characterization of the Human Skeletal Muscle Metabolome for Elucidating the Mechanisms of Bicarbonate Ingestion on Strenuous Interval Exercise… 3/n
Read 13 tweets
Brilliant/provocative review proposing unifying view of medically unexplained illness w implications 4 #LongCovid #MECFS and beyond-why this syndrome is NOT MIND OR BODY @VirusesImmunity @fitterhappierAJ @EricTopol @MichaelPelusoMD @CCalabreseDO…
Many medically unexplained diseases #LongCovid #MECFS #Fibromyalgia @SjogrensOrg #Lupus share a common clinical endotype w prominent fatigue/pain/brain fog- as well as increased rates of psychosocial disruption
Brain and immune system are one organ and communication between brain & immune system is a 2 way street where psychologic stress can influence immune response & immune act can influence brain & behavior
Read 13 tweets
1/🧵 Grasping for help in LC

📍as a #LongCovid patient you admitted on embarking to Turkey for pheresis that
📍this Tx was an UN-established long shot
📍but your life w this syndrome had devolved
📍as a scientist you now found yourself willing
📍while others conduct trials
2/ I see your choices in seeking therapy for #LongCOVID as brave & honest w cautious expectations cognitively & physically.

Most importantly, you’re demonstrating hope & a desire never to give up.

Knowing you, @pamelarbishop, and calling you friend is a gift beyond measure.
3/ For anyone who chides a highly intelligent person for pursuing alternative approaches to solving health problems #medicine scoffs at, seek empathy & read these truth-telling books 📚

@DouthatNYT @meghanor are my teachers…

#LongLyme #MECFS #LongCovid #Fibromyalgia
Read 4 tweets
1/🧵 Micro Clots & Endothelial Dysfunction in Long COVID

Plus new Epidemiology in @JAMA_current some say proves #LongCOVID is a hoax⁉️
Truth is…endothelial dysfunction plus inflammation can lead to life-altering brain & body dz.
Let’s explore data

Pic H/T @VirusesImmunity Image
2/ Remember that Vascular flow problems don’t occur in isolation from inflammation.

This new piece by @Jamie_Ducharme balances the discussion well.
It’s time for great studies & NOT immediate widespread treatment with blood thinners that might harm.
3/ The urgency is that people are living w what amounts to newly acquired #dementia.
This WaPo piece starts w “Haze. Slow. Drunk. Lost.”
Our patients are adamant that descriptors like #fatigue & #brainfog don’t do justice to what makes them suicidal.
Read 22 tweets
Added entry about sodium oxybate to treat #fibromyalgia to Wikipedia. Rejection by @FDACBER was based on potential abuse by others (like as GHB) rather than effectiveness of treatment.

There remain few, if any, effective treatments for fibromyalgia. 1/…
managed to get the main reference. Hard to do on phone. If anyone able to help FDA rejection at… .. any number of places regarding paucity of effective treatments for fibromyalgia.

If anyone with spoons able to help add these, appreciated. 2/
My psychiatrist was quite put out when he read the data from the trials. It has as good or better evidence as any approved treatment.

Sodium oxybate is used to treat excessive daytime sleepiness, with prescribing and distribution tightly controlled. 3/
Read 5 tweets
Its my 20 month vaccine anniversary today.

I now take: ketotifen, sodium, statins, anticoagulants, antiplatelets, H1 and H2 antihistamines, plus vits/mins to address deficiencies and high needs, and some supplements

I still feel like crap

#postvacsyndrome #LongCovid
These meds address:
😞Mast cell activation syndrome
😞My inability to produce aldosterone (endocrine dysfunction)
😞Endothelial damage
😞Platelet activation
😞Unexplained hyperhomocysteinaemia (i.e. no MTHFR variant)
Luckily for me, people believe me. But some only seem to believe me because I agree with them about other things, because i take issue with the same people they take issue with, because i havent gone on media they dislike

And that is a HUGE bias we need to overcome
Read 11 tweets

I'm analyzing some surveys. Could you please help clarify a result?

For those w/ #LONGCOVID, have VAGAL NERVE STIMULATORS helped your symptoms?

Ex: MedFit, Dolphin, Sensate

#MECFS #fibromyalgia #Lyme #MOLD: see SEPARATE polls below
For those with #MECFS, how have VAGAL NERVE STIMULATORS (examples: dolphin, MedFit, Sensate) helped your symptoms?

For #Lyme #Mold & #fibromyalgia, please see next two tweets.
For those with #LymeDisease or #mold exposure, how have VAGAL NERVE STIMULATORS (ex: Dolphin, MedFit, Sensate) helped your symptoms?

For #Fibromyalgia, please answer poll in NEXT tweet.
Read 6 tweets
🧵Dentro hilo para contar lo que hemos hecho hoy en el Congreso de los diputados, desde la Plataforma Ciudadana "Movilización Persistente" en defensa de los derechos constitucionales a la atención sanitaria y a la protección en caso de enfermar (Arts 39, 41 y 43) @DefensorPuebloE ImageImage
Artículo 43
1. Se reconoce el derecho a la protección de la salud.
2. Compete a los poderes públicos organizar y tutelar la salud pública a través de medidas preventivas y de las prestaciones y servicios necesarios. La ley establecerá los derechos y deberes de todos al respecto. Image
Art.43.3 : "Los poderes públicos fomentarán la educación sanitaria (...)"
Pero qué presupuesto del gobierno de @sanchezcastejon se está destinando para investigar el #CovidPersistente justo un año después de su descripción por la OMS
@DefensorPuebloE ? Image
Read 13 tweets
#MECFS never gets easier to accept.

Every Fall/Winter my health declines significantly. In the Spring/Summer, my health improves a bit.

Each year though, my overall baseline declines.

It feels like dying slowly and painfully. Never knowing when your body will just quit.

And no. I’m not depressed or anxious. (Though it would certainly be understandable if I was.)

In fact, I continue to be in awe of myself and my community’s emotional strength in the face of this relentless physical suffering.

Any one of the typical #MyalgicEncephalomyelitis symptoms, turned up to an 8/10 intensity, would be difficult to live with after awhile. It would wear you down.

By the time you get to 3-4 of these symptoms, it’s debilitating.

Imagine getting to 100-200 daily symptoms.

Read 28 tweets
🧵 #LivingLongCovid

Some maybe already know me probably% and maybe my story.

I am a #HealthCareWorker and since before and at the beginning of #COVID19 I have worked in the #ICU saving lives and learning about #IntensiveCare

I've had #COVID19 3 times so far this pandemic.
I developed #LongCovid from my 2nd contagion that was serious at the time, I required hospitalization in #ICU and oxygen therapy.
Since Dec 2020 I have lived with #LongCovid since then and when I understood the Multi-organic gravity of #LongCovid
And I still do it daily.

A few days ago I had a 2nd #InfarctionSilent a year ago I had a multiorgan failure accompanied by #infarctionSilente

We know that #COVID19 can cause #myocarditis and that is possibly the case, I don't know yet.

I tell you now.
Read 19 tweets
„Goebel et al. gehen davon aus, dass #Fibromyalgie, #MECFS und #longcovid Autoimmunerkrankungen sind, die durch lokale (keine systemische) Entzündungen gekennzeichnet sind.“
Goebel et al. injizierten Mäusen #IgGs von an #Fibromyalgie erkrankten Patienten. Es dauerte 2 Tage bis sie überempfindlich gegenüber Druck, Kälte und Schmerz wurden und sich ihre Griffkraft verringerte. (Kontrollgruppe: IgGs gesunder Probanden > 🐭 blieben gesund)
Read 8 tweets
11 super interesting facts about the PAIN NEURO MATRIX that everyone should know:
👇 follow the thread 👇
#1 ... is a matrix of brain structures🧠that process and regulate pain information
#2 ... includes various nuclei in the brainstem, the amygdala, hypothalamus, thalamus and areas of the cerebral cortex
Read 13 tweets
“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”…

“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
“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
Read 11 tweets
Criticism of the new #Fibromyalgia coding for ICD-11:

Concerns about the taxonomy, definition and coding of fibromyalgia syndrome in ICD-11: the potential for negative consequences for patient care and research, Häuser, Clauw, Wolfe et al:

Free text:…
To submit comments on ICD-11 coding for Fibromyalgia:

First register with the ICD-11 development platform, here:…
Read 7 tweets
🧵 It’s #DisabilityPrideMonth and we’re seeing another wave of COVID globally, so here’s a list of reasons why you should watch the Netflix documentary ‘Unrest’ and educate yourself on #MECFS and #LongCovid
ME/CFS, also known as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome is a multisystem, physical disease that can be identified by its cardinal symptom, PEM (Post Exertional Malaise), in which after activity, the individual experiences a delayed worsening of symptoms. 1/
These symptoms are debilitating and leaves sufferers after activity, even on the mild end of the spectrum, with migraines, light/noise sensitivity, vertigo, nausea, vision changes, widespread muscle/joint pain, weakness, orthostatic intolerance and at its worst, paralysis. 2/
Read 14 tweets
This is the kind of paternalistic, unscientific nonsense that #MECFS #Lyme #Fibromyalgia #HSD #POTS #MCAS #Pandas #Pans #EDS #VaccineInjured #FQtoxicity patients have endured for decades. Now it’s the turn of #LongCovid
I’m going to make an offer to our colleague. Hopefully @DrKGregorovic can convey this message as I am blocked. Happy to have a Zoom coffee with both of you. We can examine
-the paper @awgaffney has tweeted & discuss the flaws
-the evidence for biomedical causation in #MECFS & LC
-the evidence for the ‘false sickness beliefs’
-the quality of the studies advocating exercise & talking therapies
-studies looking at the outcome of exercise in #MECFS & #LongCovid populations
-cardiovascular & other outcomes in #LongCovid

I think that is fair? Let me know
Read 6 tweets
1. If you’ve enjoyed/found my threads useful and have some disposable income would you consider donating to OMF? They fund research that will help those of us with #MECFS #LongCOVID #PTLDS & #fibromyalgia.
2. My life has basically been on hold for over a decade since I first developed ME/CFS. It took me until 2020 to get a diagnosis. Delayed diagnoses like mine are common because there are currently no labs that doctors can order to definitively diagnose ME/CFS.
3. Diagnosis is by process of elimination where doctors run tests for other possible diseases and rule them out to narrow it down to ME/CFS.
Read 8 tweets

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