Discover and read the best of Twitter Threads about #cci

Most recents (24)

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
Tag 3 nach #MEcfsImBundestag

Ich gehöre zu denjenigen, die extrem von den sogenannten #Komorbiditäten betroffen sind, die - das darf bitte nicht vergessen werden - nicht irgendwelche belanglosen Begleiterkrankungen sind, sondern hochgradig quälend. 1/x
Dazu gehören #posturalesTachykardieSyndrom (z.B abnorme Herzraten, Atemnot usw.), die #SmallFiber Neuropathie (z.b ekelhafte Nervenschmerzen, Brennen, Sehstörungen, Gehirn in Flammen, Pochen am ganzen Körper usw.) und das MastzellAktivierungssyndrom. #Dysautonomia 2/x
Allein #MCAS kann zig ekelhafte chronische Symptome hervorrufen.

Alle diese sogenannten #Komorbiditäten können vorkommen sowohl bei #MEcfs #LongCovid als auch #PostVac und - das ist mir ja immer wichtig - in hohem Masse auch bei der Schädigung durch #Fluorchinolone. 3/X
Read 6 tweets
„Von Kopf bis Fuß von einem Tsunami erfasst“
#MEcfsimBundestag

Ich musste mich im Liegen ins Ausland karren lassen, um dort weitere spezielle Diagnostik zu erfahren. In Deutschland weiss man nicht, dass #MEcfs auch mit einer HalswirbelsäulenInstabilität zu tun haben kann. 1/x
In Kombination mit weiteren Triggern, wie jetzt bei #LongCovid, aber auch #EBV #Lyme oder gar #Malaria. Auch toxische Antibiotika gehören dazu, wie die #Fluorchinolone, (haben sehr viele genommen - leider) und ja auch Impfungen #PostVac . 2/x
„Später wird sie in einer Mail schreiben: „Jetzt nach so einem Telefonat: wegen der Belastungsintoleranz und POTS – Herzrasen bis unter die Decke, Luftnot, Zittern, Schwindel, Sehstörungen, irren Tinnitus, Muskelschwäche usw. Das ist das, was viele nicht verstehen, 3/x
Read 5 tweets
#SupremeCourt hearing an application by Google seeking stay of the order by Competition Commission of India requiring extensive changes to the search giant’s Android mobile platform by January 19.

@Google @CCI_India Image
Hearing begins.

Senior Advocate Abhishek Manu Singhvi outlines structure of his arguments.
Singhvi: Lordships rightly said this matter duplication is not required.

Impugned order is a series of non reasons. Based on misapplication of a parliament standing committee report. Where is the law here?

#SupremeCourtofIndia
Read 67 tweets
#MEcfsimBundestag @Karl_Lauterbach

„Es ist ein Armutszeugnis für die Abgeordneten des Bundestags, die sich an diesem Tag hinter den Mauern des Reichstagsgebäudes versammeln. 1/x

berliner-zeitung.de/open-mind/verk…
Selbst für jene der CDU/CSU-Fraktion, die einen Antrag eingebracht haben zum Thema: „Hilfe für Betroffene des chronischen Erschöpfungssyndroms“. Denn ebenjene Parteien waren 16 Jahre lang an der Regierung, hätten längst die nun eingeforderte Hilfe auf den Weg bringen können. 2/x
Die Diagnose ME/CFS, landläufig als Fatigue bezeichnet, existiert nicht erst seit Corona als Folge der Pandemie, sondern ist seit mehr als einem halben Jahrhundert offiziell anerkannt. (…) 3/x
Read 7 tweets
Lieber @StefanGelbhaar!
Sie sitzen für meinen Bezirk im Bundestag.

Am Donnerstag 19.1.23 findet dort eine Debatte zum Thema „Hilfe für #ME/CFS Betroffene“ statt. Gleichzeitig draussen eine stille Installation mit 400 Portraits von SchwerstBetroffenen #Nichtgenesen! 1/x Image
Ich kann nicht mehr zum Bundestag gehen. Liege ohne medizinische Versorgung in Ihrem Bezirk 24/7 zuhause, bitte Sie an der Debatte (19.1,18.10 Uhr) teilzunehmen,für den Antrag zu stimmen. 2018 nach langjähriger Odyssee bin ich an der Charité mit #ME/CFS diagnostiziert worden. 2/x
#MEcfs, bei mir u.a. ausgelöst durch mehrere Infektionen, einem schrecklichen Antibiotikum namens #Fluorchinolone, inzwischen mit einem ‚rote Hand Brief‘ versehen. Dazu gesellen sich noch das Posturale Tachykardie Syndrom (abnorme Herzarten, Schwindel, irrer Tinnitus u.v.m.) 3/x
Read 6 tweets
If you haven't read it
From our newsletter:
$DJI
"Last Friday it managed - just like the $DJT and $IWM - to make a solid upward breakout... did so on high volume... close above the 20, 50, 100 and 200DMA.
All indicates that this will most likely be the way forward for the #SPX"
" #DJT made an excellent breakout and closed above 20 and 100DMA. It closed right at its 50DMA. Bullish action from a leading indicator. $DJT will have to surpass the conjunction of 50DMA and 200DMA next week, in order to validate more upward moves"
It did that yesterday

#ES_F
$QQQ

"A follow up rally is expected to allow it to break out of the Noise Box and break above at least the 20DMA.
On Monday it broke above the Noise Box, yesterday above the 20DMA, today above the 50DMA"

#QQQ #NDX #TradingSignals #bearmarket #SPX #ES_F #trading #SPX
Read 10 tweets
Heute auch etwas über #Fluorchinolone - eine Antibiotika Gruppe, die leider jahrzehntelang leichtfertig verschrieben wurde - immer noch wird - bei jeder „Wald- und Wiesen Infektion“ - taucht nicht auf, in der neuen LL #Müdigkeit, obwohl explizit von #EMA als Folge benannt. Ein 🧵
Liste der schwerwiegenden Nebenwirkungen ist sehr lang. #Müdigkeit ist da bei weitem nicht das schlimmste Symptom. Die verheerenden Nebenwirkungen sollten bei Ärzten eigentlich bekannt sein, sind sie aber leider nicht.
2/x
Die EMA weist seit 2018 (viel zu spät) verstärkt auf Schäden hin, einen Roten Hand Brief gibt es auch – aber es gibt leider keine Entschädigung für die Betroffenen. Stattdessen werden Betroffene verhöhnt (hier auch verzweifeltes #DoctorShopping)

➡️ ema.europa.eu/en/documents/r…
3/x
Read 13 tweets
I don’t understand why every #MECFS & #LongCovid patient presenting with the classic neuro-immune & vascular symptoms, aren’t immediately sent for screening for:
- POTS
- EDS/hEDS
- EBV & HHV reactivation
- Microclots & hyperactivated platelets
- … what else did I miss?
Adding summary from your suggestions:

- Further common co-morbidities:e.g. MCAS

- Further infection-onset disease: e.g. Lyme, Bartonella, tick-borne

- Symptom detail (unlock treatment!): e.g. Chronic Epipharyngitis , Chronic Pharyngotonsillitis

Adding: #MESpine #CCI etc too
Adding the importance of testing and screening for common dysautonomic, neuro-endocrine and autoimmune diseases, including this excellent list here from @Dysautonomia:
#TreatME #TreatLongCovid #LongCovid
Read 3 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.

1/
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.

2/
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.

3/
Read 28 tweets
Many who became a Full-Time #Trader in the last two years would be in a dilemma because of the volatility in this market.

Be a part-time trader instead of leaving it.

This #thread 🧵will be on what all #strategies, I personally use to generate active #income in the market.
We will discuss positional trading and investing in stocks and then about option trading.

In #Stocks, we don't take any leverage, so risk is lesser, whereas in #Options it is a leverage instrument, so risk is high and it can wipe out your capital.
#Investment #Portfolio:

This is basically my long-term portfolio, which I create for a horizon of more than 5 years.
There are certain criteria which I use to filter stocks in #Investment.

Mostly look for the sector where you know something.
Read 20 tweets
I haven’t provided much of an update in my #longcovid #mecfs #pots #mcas picture.

So here it goes… 🧵

For reference, I got Covid June ‘20 and spiraled into #longcovid July-Aug

What I’m working towards right now: tethered spinal cord evaluation by 2-3 surgeons.
Between Aug ‘20 - May ‘21 I was dx’d with: POTS, SIBO, MCAS, ME/CFS.

I also was tested for collagen disorders which came back negative.
Between Dec ‘20 and Aug ‘21 I had a workup around my c-spine because of *pulsatile* tinnitus in my left ear - a ‘whooshing’ sound. It can be an indicator of a vascular issue at the cervical junction (compression).

A CT revealed I had jugular compression.
Read 28 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
Dr. Steven Harris discussing how to evaluate complex #LymeDisease cases.
Steven's father Nick Harris, who recently passed away, was the founder of @igenexlab and founding member @ilads_lyme lymedisease.org/nick-harris-ig… #LymeDiseaseAwarenessMonth
#LymeDisease makes all other diseases more complex (eg Lyme + Babesia is worse than Lyme alone) and other conditions make Lyme harder to treat (eg. Bartonella &/or MCAS) #LymeDiseaseAwarenessMonth
#LymeDisease treatment needs to take into consideration the length of time of the infection(s) and all forms pathogens & toxins, including mold.
Read 4 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
Next speaker
Peter Rowe, MD: Lessons from ME/CFS that can inform Lyme disease as well as Long COVID
Professor of Pediatrics @HopkinsMedicine
#LymeDiseaseAwarenessMonth Image
Peter Rowe, MD
Postural Orthostatic Intolerance #POTS is very common in ME/CFS.
#LymeDiseaseAwarenessMonth ImageImage
Peter Rowe, MD
Common forms of orthostatic intolerance. Frequently the heart rate will be above 120 BPM. #POTS #NMH
#LymeDiseaseAwarenessMonth Image
Read 14 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
#CCI is an indicator which is used in the #stockmarket

This learning thread would be on
"𝙐𝙨𝙚𝙨 𝙤𝙛 𝘾𝘾𝙄"

Also, an investment strategy and trading strategy is shared

If you appreciate this, a Like & Retweet will go a long way in maximizing the reach of this tweet♥️

1/19
Before we start with various strategies, just a brief about Commodity Channel Index (CCI) which is a momentum-based oscillator used to help determine when an investment vehicle is reaching a condition of being overbought or oversold.

2/19

investopedia.com/terms/c/commod….
#CCI is freely available indicator on all charting platforms. I have added CCI indicator on @tradingview.

There are three important numbers in CCI which are -100, 0 and +100.

Shaded region marks range from -100 to +100.

3/19
Read 19 tweets
So it appears there is some association with positive SARS-CoV-2 pre-op in kids with appendicitis -- including kids who tested positive but were asymptomatic. A story about how this relates to #MECFS (1/6)
#LongCovidKids #LongCOVID

bmcinfectdis.biomedcentral.com/articles/10.11…
My own story is that I had LRQ pain and was taken to the ER as a kid. It was baby's first medical gaslighting: they made us wait in the ER for hours, never scanned for anything, said I had probably eaten something bad (like I was 1 instead of 8) and sent me home. (2/6) #MECFS
Then, in graduate school, the same pain started up again, this time lasting weeks. Experience is a hard teacher. I did everything I could on my own, too much to list here. My efforts made a dent, and after 1-2 months, it died down to a dull roar. (3/6) #MECFS
Read 9 tweets
So excited to watch this interview between @polybioRF s @microbeminded2 and @MS_SouthNassau’s @RuhoyMD that I’m going to live tweet it. Dr. Ruhoy is a neurologist with a Ph.D in environmental medicine who works with #longCOVID #mecfs #EDS patients.
Ruhoy describes her long-standing interest in integrative medicine, natural approaches, and environmental medicine. She’s even a certified medical acupuncturist! She now helps lead a neurosurgery practice. 😍😍😍
Ruhoy: “I was an environmentalist from when I was very young and I believe that the world around us plays a role in our health. Even before I was a doctor, I would always try to find ways of living a healthier life. I saw no reason why I couldn’t combine it.”
Read 58 tweets
I'm so dissapointed in the doc who has been my best PCP for years #NEISvoid #DisabilityTwitter #EhlersDanlosSyndrome I have cci and it got significantly worse the last 2 months. I've tried to deal with it myself, but its been a major issue for pain, mobility & neuro symptoms #eds
that nothing helps. we changed from a pain patch to an injection because it give me more relief, but my symptoms persist & cause serious limitations i didn't have before. my PCP told me I had to do PT to get scans. I said okay, because this has happened before. I need 6 weeks
to get scans, which is a lot. my 1st pt was terrible [and I posted about it earlier] and my next pt is somebody I've never been with, so idk if they know eds. the only PT who I know, like, and who knows eds is booked through December. I called insurance to ask about getting scans
Read 16 tweets
In 2020, I underwent 2 neurosurgeries that 2gether greatly improved my quality of life. Before surgeries, I was in permanent decline, regardless of rest. I was full-time electric wheelchair user & often bedridden. A year later, surgeries have given me back a piece of life. #MECFS
The surgeries: a chiari decompression with laminectomy in May 2020 and a tethered cord release with two laminectomies in October 2020. In this thread I’ll discuss my journey. I share this in the hope that it may help someone who sees themselves in my story.
This thread would be unruly if I dove into every intricacy, nuance, failed attempt, dead end, test result, not-so-nice doctor etc. I’ll try to hit the high points. The best way to learn more is to join the ME/CFS+ Brain and Spine Facebook groups. #MESpine
Read 26 tweets
The virality of this tweet hearts my heart a little but I am glad we are at least (re)-learning what infections (**not only SARS-Co-V2**) can do.
I deeply, deeply hope we can get provide resources to #longCOVID patients EARLY such that we can 1) not exacerbate their symptoms via misguided treatments (e.g., GET) and 2) prevent surgery for those who develop surgical pathologies.
I also hope the huge crush of patients developing #MECFS #POTS #MCAS #CCI etc in the wake of SARS-Co-V2 can help spur a wave of research and healthcare infrastructure investment to help all the people whose life-changing infection came 2, 3, 4, 5, 10, 20, 30, 40 years ago.
Read 4 tweets
When you counsel ICU patients (>65yo)/their proxies before receiving a tracheostomy (‘trach’) and a gastrostomy (‘PEG’), what do you estimate to be the cohort’s 90-day mortality (day 0 = hospital admission)?
When you counsel ICU patients (>65yo)/their proxies before proxies before receiving a tracheostomy (‘trach’) and a gastrostomy (‘PEG’), what do you estimate to be the median number of hospital free days out of 90days in this cohort?
A🧵:When I was a fellow, we had to do rotations through a unit at MGH called the RACU - the Respiratory Acute Care Unit – basically a chronic vent unit after patients got trach/PEGs. @galbamd and @almoskow remember the heartbreak and drama in this unit all too well
Read 17 tweets

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