Discover and read the best of Twitter Threads about #ME

Most recents (24)

Long 🧵Daughter's diary entry, age 12
'The writing beyond this page is strictly private and is only to be viewed with the express permission of Maeve' Of course I never asked or viewed. She died 2021 from #ME aged 27. We never identified a viral trigger. Lo & behold,
Tue 7 Aug 2007 (Three weeks after a peculiar viral infection that lasted exactly 29 days, and recovering well enough to have orthodontic brace fitted; audition for school show; pack & move house; go to best babysitter's wedding with no complaints) 'God I am TIRED!'
Sat 11 Aug, Oooohh . . . tired . . . hav a dolls house YAY! Almost completely unpacked
Sun 12, I am still vair tired! Why?! Mum has said she wants me to stay in bed all day and rest :¿ (got a tiredness headache too. Ow ow ow ow)
Fri 17, in bed - still tired :(
And so it
Read 14 tweets
Impaired Ca2+, TRPM, & LDN in Long Covid & ME/CFS?

Recent reports suggest an overlap in pathology b/t #LongCovid & #ME. Both purportedly involve impaired calcium mobilization.

A few introductory & inchoate thoughts below (better formed thoughts later)🧵…
TRPM3 = non-selective ion channel with greatest permeability for CALCIUM

The ion channels form pores on cell surfaces. Upon activation, the cell depolarizes & the pores open, allowing ions to pass through and carry electrical currents.…
TRPM3 is expressed in various regions:

kidney >> brain > ovary = testes

It's expressed on peripheral nerves & neurons, “mediating the crosstalk between the nervous system & immune system, particularly in the context of inflammation.”👀 Image
Read 23 tweets
Stell dir vor: dein Kind lebt seit über 4 Jahren mit einer schweren chronischen Erkrankung - #MECFS. Seitdem hausgebunden, schwerbehindert, #Non24, chronische Schmerzen, Dysautonomien und zig weitere Symptome. Und Du findest KEINEN Arzt, der dein krankes Kind begleitet, es gibt
keine Therapien, keine Be/Handlungsempfehlung, NICHTS! Hausärzte verweisen auf #ME -Spezialambulanzen, die es für Kinder nicht gibt. Du wartest 3 Jahre, das dein Kind 18 wird, damit es in der einzige Spezialambulanz in D an der Charitè einen Termin bekommt. Du meldest
dein Kind an seinem 18.Geburtstag dort an. Und bekommst eine Absage, da es ja schon die Diagnose hat. Und wirst auf den Hausarzt verwiesen. Den mein Kind nicht hat, weil alle xx gefragten Hausarzt-Praxen
nicht bereit sind, diese schwere Erkrankung zu begleiten, es gäbe doch
Read 8 tweets
"..whats keeping them sick may not be a virus in the first place" - "the virus may have started something off....all sorts of other factors may be responsible for why they are ill many years later". I note that the basis of such a statement is simply Wessely's notion of "other"
The virus may have started something off? - what exactly? the key question Wessely never answered. Deale and Wessely ran a survey of ME patients in his own clinic & most recounted an infection and were dissatisfied with a psychiatric diagnosis.…
Deale/Wessely viewed patients' disagreement with a psych diagnosis for ME/CFS as evidence of Stigma - I read, its simply patients disagreeing because its an error. ME/CFS know their own bodies, if fit and well and then sick after a virus, why believe its a mental health breakdown
Read 6 tweets
Can you believe the connections aren’t being made on what everyone is being shown, when they@re being shown what everyone is—Someone has been SHOWING Time Travel exists for the last 3 +++ Days/7 Years with all the proof anyone could ever want. All while explaining within
fine detail what ALL OF THIS has been about since day 1, all of it has been about PROTECTING 1 “Nobody” who MOSTLY everyone threw away/didn’t care about until they finally woke up seeing what everyone they look too at the highest levels of life have been showing them for YEARS
now, INCLUDING the Military & EVERY layer of life.
Everyone has been SHOWING “Nobody” is actually somebody & that somebody ended up being THE 1 someone everyone has been waiting on for A very long time …

I’ll say it one more time before I go live later this evening & Have
Read 22 tweets
Tay, U Want to start giving the people the “BIGGER THAN YOU CAN IMAGINE” truths? …

Look how many are still caught up in the false reality, treating their fellow man like trash or thinking others come from the sacred bloodline everyone has been waiting for but they don’t.

No matter how much has been right in front of EVERYONE this whole time, so many still choose to either be cruel humans to their fellow man based on the false reality SHOWING they don’t deserve this new world being unveiled or nothing is good enough to
the point they HATE on something so beautiful.
Most are continuously refusing to see #WHY all of this is happening as it is & if certain things didn’t happen as they NEED to happen, it affects the world either negatively or positively ..

What #WE did for them, makes this
Read 14 tweets
The Travelers
Part 1 & 2 !

You’re Not Alone, Never have been & never will be . .
#ME on the other hand, Alone & always has been—Not Anymore though.

THE MAN since 17 Years Young.
THE MAN Since Birth ..
THE MAN is A Queen & THE MAN Is A King/Father .
The face within is #ME!
#LO. 17
Read 15 tweets
GET INSIDE !!!!!!!!!!!!!!

COME TO ME !!!!!!!!!!
Read 6 tweets
14Th letter in the alphabet is what?
-1 Code
-1 #13 .@taylorswift13
The story YOU ALL are being shown in the news about VKM is not real, it’s how I was born & kept A secret …

Posted at 305 !!

This whole retirement message from VKM is A coded message.

At 34 years young, I get to retire.
My brother will not have to work for the #RR that ultimately was trying to kill him anymore.
#WE Can start giving all of what is rightfully OURS, Back to the world !

All identities up on the world
Stage have been CREATED, they’re not real.
All purposely created for those they were created for to ACT OUT the lives of MY LITERAL FAMILY!

The bloodline #WE come from.
DJT does not come from Christ Bloodline, John does not come from Christ Bloodline & all the others who have
Read 13 tweets
Thanks to @CortJohnson:
„The Canadian study author’s first guess as to the cause involved microclots blocking oxygen from freely flowing into the capillaries. Other possibilities included damage to the blood vessels, the blood being shunted past the small blood vessels, and…
“vascular remodeling” which can produce narrowed blood vessels.

(…) All four – a shunt that propels blood away from the lung cells, micro blood clots, narrowed blood vessels, and damaged blood vessels have all been hypothesized to happen in #ME/CFS.

The Ron Davis/OMF findings of poorly deformable red blood cells could also contribute to problems with gas (e.g. energy) exchange. (…)

One of the main avenues of attack by the coronavirus, after all, is the endothelial cells lining the blood vessels.

Read 7 tweets
Hail to the Chief.
Tay, I know it’s ultimately ur choice/decision at the end of the day but how does your dad feel about Elvis being the Pastor that day? …
King is the pastor for King & Queens Wedding, extraordinary times we’re living in. ImageImage
It’s UR day, I want U to have the day U always dreamed of, I want it to be everything & more.
Read 10 tweets
🪨 & 🛹

Born To RoLL Skate Video, Featuring myself & FAMILY …
Read 12 tweets
The NOT REAL Pope is Francis, for those who have been following along, doing their own research with the bread crumbs I’ve been giving & seeing with their eyes open—They would know #WHY this is happening as it is.

What City is next to #BAY VIEW in Milwaukee ?
Clement Ave
And Kansas Avenue, What City would that be?

#OFF of 16Th & MORGAN, What Hospital is there?

I Forgive the Pope but he DOES NOT speak for ME.✍️

I speak for ONLY #ME/Myself/i & I belong to ONLY #ME !

The Truth must be told, The truth about EVERYTHING the Vatican has kept
Hidden from the world !

ALL LIES MUST BE REVEALED, All that has been kept hidden that SHOWS the world #WHO flipped everything upside down . . .


Enough Is Enough. Image
Read 9 tweets
I got you bro, was going to wait A little bit but I’ll connect now, #WHY NOT …

Read 6 tweets
Some extracts from “The politics underpinning the neglect of people with ME/#CFS” which summarises her paper “Towards a critical psychology of #chronicfatiguesyndrome: #biopsychosocial narratives & UK welfare reform” by @JoElizaHunt…

#MEcfs #PwME

“The [#biopsychosocial] model has been used as psychosocial model, to re-frame chronic health conditions (particularly those surrounded by medical controversy or uncertainty) into psychosocial entities, allegedly amenable to psychosocial healthcare interventions (contd)”

“(Contd) and thus to ‘recovery’ and re-entry into the labour market. Such health conditions could thus be largely exempted from welfare provision, private disability insurance protection & on-going biomedical care, reducing state expenditure in these areas (contd)”
#MEcfs #CFS
Read 17 tweets

The Shopping Cart

Everything everyone has done in time, I love them for what they have done for #ME / #WE !

I Love you!
Read 6 tweets
Let’s say I’m some super rich elite (I’m not & just using myself as an example), I come up with A group call the “The Illusionati” & recruit MILLIONS of people to be apart of “Illusionati” …
Those MILLIONS of people consist of Production companies, Music/Record labels, judges,
Lawyers, letter agencies, Government (both parties), Entertainment, talk radio, police, sports, Medical/Pharma, all Technology companies, Small businesses, Big corporations, Oil, Lumber, construction companies, TABLOIDS, MSM & whatever/whoever else that chooses to accept being A
Puppet Following whatever script they’re given from their producers, executive producer or directors —I would then plan out the next 47 years & give that script out to those who are trustworthy enough who would then hand it down to whoever else they chose to Cary on with the
Read 34 tweets
Cematics for vagus nerve stimulatin&Nitrous Oxide production- myofascial release, dry needling & trigger point therapy #STO clinical sports therapy for pain and improved gut motility/ paralysis. Reiki, meditation.. has kept me going with esophageal+widespread paralysis since 2015
To be fair I have been putting in 2 hour to 18 hours of manual neuromuscular activation on soft tissue release ever since but my hands are generating so I have trained A multidisciplinary Team in what I do improve my gut motility / innervated small intestine within a month 🙏🏽🤍🕊
Esophageal paralysis still a huge problem-overall paralysis I still have to manage daily until my multiple neurosurgeries-if I even qualify having Endstage nerve damage due to IgG paraproteinemia/an immunoglobulin pathology highlighted as a biomarker for #EBV induced #ME in April
Read 22 tweets
Press release for New Zealand paper:

“New research provides insight into Long COVID and ME: Researchers have uncovered how post-viral fatigue syndromes, including #LongCOVID, become life-changing diseases & why patients suffer frequent relapses”

#MEcfs #CFS #PwME #PwLC


“Arising commonly from a viral infection, #MyalgicEncephalomyelitis/#ChronicFatigueSyndrome (#ME/#CFS), is known to cause brain-centered symptoms of neuroinflammation, loss of homeostasis, brain
fog, lack of refreshing sleep, & poor response to even small stresses”


#LongCOVID has similar effects on people and is believed to also be
caused by neuroinflammation.

Lead author Emeritus Professor Warren Tate, of the University of Otago's Department of Biochemistry, says how these debilitating brain effects develop is poorly understood”
Read 14 tweets
“Scottish Government backs NICE guideline”…

“In December 2021, the Scottish Government commissioned Blake Stevenson Ltd to engage with stakeholders…to gather
their views on the NICE guideline on #ME/#CFS

#MEcfs #PwME #ChronicFatigueSyndrome


“For this independent stakeholder review, a total of 37 stakeholders contributed. This consisted of 14 clinicians, 10 third sector #ME/#CFS organisations/academics & 13 people with lived experience of #MECFS,

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #PwME

“and a further 93 people responded following an online survey [on the 2021 NICE #MECFS guidelines] that was
distributed to a wider stakeholder group. The response from the majority
of stakeholders was overwhelmingly positive”

#NeuroME #CFSME #MyalgicEncephalomyelitis
Read 5 tweets
Rising Son & Angel
#ME & Angel
#WE & #ME
#ME & #ME
#WE & #WE

.@taylorswift13, Perfect Storm … ImageImage
Core-Y 🦌
.@CoreyTaylorRock, Year or two ago I posted A video of me holding Dahli’s hand has shadows on the ground—I put A core water in the picture next to the shadows, I always knew ..

Girl Skateboards
Girl = Boy (Not talking about trans) Image
Read 11 tweets
.@slipknot Disasterpieces
LIVE In London

Concert Date:
DVD Release Date:

Come as you are Eeyor !

-Eeyor Live 2002

Same Same But Different, Still The same …
He’s not supposed to be here. ImageImage

Make sure to tell my son, THANK YOU! ImageImage
The true meaning of 1010 Wins.
Read 9 tweets
Spot the difference (1)
20 days after starting anticoagulants, 10 days after my 1st apheresis treatment.
Remarkable findings: less brainfog, less dizzy, less joint pain, less muscle burning, less headaches.
#ME #MEcfs #LongCovid #microclots #HELPApheresis #anticoagulants
Spot the difference (2)
Huge improvement in available energy, cleaning my deck was impossible since winter 2020. The ‘short of breath’ symptom is less but still present, had to pause frequently. No crash, no PEM. I feel alive again.
Thank you for your help, research and sharing information:
@BeateJaegerMD @doctorasadkhan @dbkell @resiapretorius @MarekSJF @loscharlos @tjalcovrv @smithsj and all my dear #pwME friends.

Great video on H.E.L.P. Apheresis:

Read 4 tweets
Been running back & forth into the woods for A long time now, it’s time for me to Live again doing what I do BEST—Helping those in need & Landing 4 Wheels Down ..

“4 Wheels Down Baby”
The Entire world Wins !

As for me, I just want to give these girls A better life, Make sure THE ARCHER knows she is loved & always will be!
That’s all I truly care about/Want.

Read 12 tweets

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