Discover and read the best of Twitter Threads about #Fibromyalgia

Most recents (24)

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
Ich muss thematisieren, was hier m.E. zu kurz kommt.

Obwohl #MECFS seit über 50 Jahren als eigenständige Krankheit von der WHO anerkannt ist, wird sie NICHT anerkannt.

Was ich damit meine :

1/x
Obwohl es sich um eine schwere Erkrankung handelt, die 25% komplett bettlägerig und 60% der Betroffenen arbeitsunfähig macht, erhalten Betroffene keinen Behindertenstatus.

Ausnahme : zusätzliche andere Diagnosen (z.B. psychische, was dazu führt, dass Betroffenen immer
2/x
wieder suggeriert wird, sich auf eine psychische Diagnose "einzulassen" (was einige schlussendlich auch tun. Dass das das Bild noch mehr in Richtung "Psyche" verzerrt, brauch ich nicht mehr zu erläutern).

Ohne Behindertenstatus entfallen Betroffenen Hilfemöglichkeiten.

3/x
Read 20 tweets
Dear World,

Recently a man of much wealth and so undue power & influence, @elonmusk, made a bizarre, senseless attempt to malign a drug, #BUPROPION (aka Wellbutrin/Zyban), which continues to profoundly benefit the lives, the functioning, of myself & others.

1/📜
The potential implications of this must be addressed.

Of all the drugs on the market — some easy to get as candy (alcohol, cigarettes, vaping), others blithely prescribed, often irresponsibly (opioids, broad-spectrum anti-biotics) &

 2/📜
in some cases even seemingly maliciously (opioids, anti-psychotics) — why would he pick one that´s been in use since the ´80s, never had any controversy, helps a lot of people lose weight, and helps a lot of us THINK, PERCEIVE, COMMUNICATE, LEARN, and MOVE ABOUT.

 3/📜
Read 17 tweets
#chronicillness Twitter to doctor advocates
-you’re only speaking out because you’re sick yourself
-now you know what it’s like (implication- all of us neglected & psychologised patients before. NOT true- some of us just did our best within a system stacked against us)
1/n
-you need to mention ‘x’ disease as well. (We’re learning as fast as we can. Remember we are sick too. Some of us are bed-bound lying in darkened rooms. You know how much energy it takes to speak up)
2/n
-don’t dabble in areas you know nothing about. (In my case #Palestine. Being a chronic illness advocate doesn’t make me a one-trick pony. I’ve visited the West Bank & witnessed firsthand the horrors of #IsraeliApartheid. So I will speak up- I’m not here for anyone’s comfort
3/n
Read 5 tweets
What I have learned since being unwell myself has destroyed any faith I had in my profession’s leaders. I used to think that deep down most senior clinicians acted because they had the best interests of the patient, their colleagues & society at heart. That illusion is gone. 1/n
Be it the treatment of those with #MECFS #LongCovid #Fibromyalgia #POTS #MCAS #EDS #HSD #PansPandas #Lyme #FQtoxicity #vaccineinjuries & other so-called invisible illnesses; 2/n
the refusal of senior medics to stand up & protect colleagues, the public & schoolchildren from airborne spread of #SARSCoV2 as they are too afraid to displease those in the ivory towers of infection control, @UKHSA & @NHSE management & @UKgovcomms; 3/n
Read 7 tweets
It has been an honour to walk alongside my friend & colleague of 21 years @BinitaKane & her daughter Jasmin on their courageous & inspiring journey. #LongCovid in adults children is real & serious. There are treatments available- sadly only for a fortunate few #TeamClots 1/n
(Everything I say is with the express permission of @BinitaKane). Jasmin is not the only child with #LongCovid who has been shown to have microclots & hyperactivated platelets. They are a consistent finding in kids & adults who have travelled for treatment to Germany & SA 2/n
Globally 100m are affected by this vile illness. In the U.K. alone this figure is estimated to be 1.8m, with 2/3rds reporting an adverse impact on their daily activities. 1% of primary & 2.7% of secondary school children fulfilled the criteria for #LongCovidKids 3/n
Read 17 tweets
@debbie_seymour I'm so sorry. How can we support you? The #MECFS community is here for you.

Are you aware of the #NEISvoid community for people with chronic illness? We're a great place to ask questions & get support. We're also a repository of life hacks for living with limiting conditions.
@debbie_seymour I don't know if it would help your husband understand, but this vid does a great job of explaining the physiology behind #LongCovid, #MECFS, and #Fibromyalgia:

Read 3 tweets
I’ve just been made aware of a #POTS management clinic run out of @uclh autonomic service. Brace yourself. I’ve had feedback from an attendee and it isn’t good. @UKPoTS you may be aware of this @YorkCardiology @dysclinic it’s awful 1/n
Run by 2 specialist nurses. Some jewels:
“We learn to think in particular ways
These ways may not always be helpful when you have ongoing health issues. Unhelpful thinking can increase symptoms. 2/n
These thoughts are automatic, you may not even be aware of them, until we train ourselves to think differently”
Hypervigilance, particularly of body sensations is a common thinking pattern in PoTS”
The website neurosymptoms.org was recommended for dissociative symptoms 3/n
Read 11 tweets
My biggest lesson after almost losing my life to #Lyme ❤️ failure after 12 dogmatic NYC docs failed to recognize what was wrong, gaslighted me, & implied my serious symptoms were in my head…

NO ONE WILL DECIDE MY FATE.
I was bitten by a tick in my sleep in LBI, NJ, July 4th weekend 2014, there for friend’s wedding.

Came back to nyc, woke up w crushing head/ neck ache. Little did I know “summer flu” is usually #Lyme.

Few days later, was feeling a bit better but saw bite & rash on shoulder.
Walked to urgent care. They said it was #Lyme, told me not to google it 😑, & that with 3 weeks of doxycycline, I would be 💯 fine.

My gut feeling said something was very wrong. But I wanted to believe.

I followed up w an @IDSAInfo doc from NYU to be sure.
Read 32 tweets
This #InternationalWomensDay I’d like to remind my doctor colleagues that medicine has an androcentric history that may impact upon women patients. That woman isn’t « difficult », she’s under-researched and we know less (and even less has been translated to practice). 🧵
We can do Better. Women are also represented less in medical and anatomical textbooks. Here are some papers for further information.
Androcentricity in medicine:

onlinelibrary.wiley.com/doi/full/10.11…
Misogyny in medical research:

croakey.org/the-unattracti…
Read 21 tweets
If you cannot access an #MECFS doctor, following are suggestions to treat possible co-morbidities & get your symptoms documented in your medical record:

1) Ensure thorough work-up for causes of fatigue. Your primary care provider can order most of these tests: /1
This is a great resource for tests to request or check to see if you've had done to evaluate for underlying causes of fatigue: /2

batemanhornecenter.org/wp-content/upl…
2) CARDIOLOGY to evaluate for POTS (Tilt Table Test) or NASA Lean Test can be done in office; at home test: an increase >30 bpm heart rate from supine to standing in adults may indicate POTS.

Treatment for POTS may improve some symptoms but need to find cardio aware of POTS. /3
Read 21 tweets
THREAD: Bring it down safely! ↘️💊

1/6 6⃣tweets about our new TI Therapeutics Letter 134: Finding the lowest effective dose for non-opioid #analgesics

👉🏾 Full Letter: ti.ubc.ca/letter134

#MedEd #medsafety #prescribing #BetterPrescribing Image
2/6 Consistent evidence that minority of pts get clinically meaningful pain relief from any dose of:
#Cyclobenzaprine (at best 1/4)
#Duloxetine (at best 1/6)
#Gabapentin / #Pregabalin (at best 1/6)

👉🏾ti.ubc.ca/letter134

#MedEd #ptsafety #BetterPrescribing #prescribing Image
3/6 Gabapentin, pregabalin, duloxetine:

A 2021 Canadian systematic review found NNT (numbers needed to treat) of 6-7 for "clinically meaningful benefit" (defined as ≥30% reduction in pain or pain & function)

👉🏾ti.ubc.ca/letter134

#MedEd #BetterPrescribing #deprescribing Image
Read 7 tweets
With chronic conditions such as persistent pain, fibromyalgia, CFS, ME and more recently Long Covid, people are still dismissed when their tests show nothing of note.

Cont… 👇 #LongCovid #MECFS #Fibromyalgia #pain #thepaincoach Image
The idea that a negative test (or tests) means that there is nothing wrong is ignoring the plain fact that there is something wrong.

👇
The person has just explained how they are feeling. Have they been heard? Many haven’t and that is unacceptable. Even some doctors have not been believed by other doctors!

👇
Read 7 tweets
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.
Read 9 tweets
In a Letter to the Editor published yesterday by the Journal of Translational Medicine, I describe my hypotheses about a key source of pain and inflammation in #MECFS that may also play a role in post-exertional malaise (#PEM). 1/ …nslational-medicine.biomedcentral.com/articles/10.11…
My hypotheses are grounded in experience as a caretaker for my daughter with hypermobility Ehlers-Danlos Syndrome (#EDS), #MECFS, #POTS, #Chiari malformation, and #craniocervical instability and my reading of the #MECFS and #lipedema literatures. May also apply to #LongCovid 2/
In a nutshell, my hypothesis is that vascular damage and/or endothelial dysfunction causes interstitial fluid to leak from blood vessels of people with #MECFS, leading to formation of adipose tissue that becomes fibrotic, causing inflammation, hypoxia & widespread pain. 3/
Read 18 tweets
#MedStudents, #Residents, #Fellows, and #Research Trainees - I recently had both a resident and fellow ask me how I got involved in research and published when I was a #trainee. I thought I would share my tips and advice in this thread. #MedTwitter #ACGME #MedStudentTwitter
1. Ask yourself👉what you want from this? To pursue research as career? To boost application for #residency #fellowship #employment? To get a recommendation letter? Regardless, aim for #publication (most value). Conference talks are cool, but publications stay on CV forever!
2. Basic science research=⬆️time+lab training vs clinical research. Study designs: RCTs, prospective, retrospective, case reports, review papers. Publishing case reports+review papers are most feasible endeavors during training! Best way to boost #publication numbers.
Read 22 tweets
This is a reminder to ask my friends here, please take Omicron seriously.

As someone who has dealt with having chronic illness for years that are nearly identical to long COVID symptoms; it is really really hard

Quality of life is something you don't appreciate until it's lower
I have #fibromyalgia and some days I can't physically get out of bed, and that's because of pain, or fatigue.

My pain comes in 2 types:
Phantom Sunburn
Torture Compression

The 1st feels identical to like an Arizona sunburn, except no skin color and putting on aloe doesn't help
The crushing feels like having rubber bands on your limbs that keeps getting tighter and tighter and you can't take them off.

Sometimes I imagine a steamroller crushing my legs is how it feels.

And these are not my worse symptoms

The fatigue is what kills me.
Read 8 tweets
This thread outlines my hypotheses on how leakages from microangiographic blood vessels contribute to pain, inflammation and post-exertional malaise in people w/ #MECFS and #LongCOVID. This mechanism is most pronounced in people with a connective tissue disorder. 1/
The core of my hypotheses is that COVID-19 or other viruses cause damage to endothelial cells in blood vessels, which increase their permeability, leading to the release of interstitial fluid which floods affected tissue, creating hypoxic conditions that trigger inflammation. 2/
The increased interstitial fluid eventually forms subcutaneous adipose tissue, which becomes fibrotic and painful to touch, leading to additional inflammation that releases mast cell mediators that cause further endothelial damage, in a worsening spiral. 3/
Read 26 tweets
1/ Just listened to @BBCWomansHour talking to ‘Carla & Brendan’ about living with #Fibromyalgia (find it at 35.25) thanks @fmauk for flagging, this is where I started & gradually more & more drugs were added until I was unrecognisable, 25 stone
bbc.co.uk/sounds/play/m0…
2/ and living in my armchair, I never went out except for medical appointments & my wife @Trewern_K became my full-time carer which she did not begrudge for a second but it did limit her life too! The cocktail of drugs meant I couldn’t stay awake during the day, was awake at
3/ night & dozed off during video calls with my grandson 🥲 I was in crippling amounts of pain despite being on an EMD morphine dose of 320mg a day! We are all different but I believe coming off #opioids (UNDER MEDICAL SUPERVISION) literally saved my life!
Read 8 tweets
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
1/🧵For months I’ve been grappling with what seemed like a real gap in conversations about #LongCOVID.

Here in @STATnews, I introduce you to 30 references & 3 #COVID survivors – Ray, Pam, and Carolyn – who taught me a lot. I hope you think so, too…

bit.ly/2Zb9S2J
2/ "I feel like I'm getting the silent treatment & it's killing me," #LongCOVID pt Pamela Bishop confided in me about her months-long interactions as she tried to get answers about a strange array of symptoms that have plagued her since recovering from #Covid19.

Pam then & now…
3/ Up to1 in 3 COVID survivors report experiencing #longCovid symptoms 3 to 6 months later. Their stories give me an extreme case of déjà vu because this is playing out similarly to the problem of long-term survivorship after non-COVID critical illness.
 
bit.ly/3vzcIdn
Read 26 tweets
Trigger Warning: Trauma and Self harm for thread
@nolan_syreeta @manijadegarcia @BlackInMH

Today is my first trauma anniversary of the most severe medical trauma I have dealt with in my life in a critical period of my academic journey. Really, I could be in graduate school
1/
right now. My applications to my 7 planned programs could have been so strong. This medical trauma happened 2 months before the deadlines to my graduate school programs. I had just gotten to the point where I was ready to fill out the applications that acceptance would have
2/
meant leaving my medical teams, but I was prepared to make that change. This medical trauma was the worst 2 hours of my life to a consent that really wasn’t a full consent, to have my pain dismissed, to have wheelchair support to leave denied, to have a resident speak with
3/
Read 25 tweets
Being Black & #disabled has been a journey for me to process being seen as a strong Black woman yet it juxtaposes against disability seen as weakness in our society. It has felt disallowed at points to be proud of my disabilities or to even recognize disability beyond visible 1/
disabilities. I am so grateful for everything that I have learned over the past few years that have helped me to come to this place I am in now and all the amazing people who have been there for me along the way like @Tinu, @manijadegarcia, the @DisInHigherEd team and
2/
so many more that I could stream together. Being bisexual and Christian has been hard like hiding something I am proud of because I know how the Christian community feels about the LGBTQIA+ community with exceptions for accepting churches. The conflict that lies inside of me 3/
Read 7 tweets

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