Discover and read the best of Twitter Threads about #ME

Most recents (24)

MY Family, They mean EVERYTHING to #ME & they can't stand the way many within this movement treat others just for attention or because they refuse to see what is being shown to them ..

So many only use "Family is Everything" as A Catch Phrase because someone else
used it. In reality, those many haters/dividers that use it, they don't care. Because if they truly cared, they wouldn't have started all the crap they did & the ones I #LOVE with my whole heart wouldn't have to put themselves in harms way just to SHOW everyone
WHY they are/have been doing everything they have "ALL FOR A BUCK" ..
It could just me something Natural that is happening right in front of everyone for everyone to finally catch on. Instead, ones chose to hate & divide, one chose to push others away from where they should be.
Read 4 tweets
This is a long statement, probably a bit too long, but interesting and important. My reading is that Ethiopia has not yet decided to abandon the unilateral ceasefire, but that frustration is going, both with the TPLF and their ongoing offensive....
... and with ongoing one-sided diplomatic/media understanding of the Tigray conflict.
The @NYTimes story from @declanwalsh (see below) has become a lightning rod for public and government concerns that Ethiopia is not being listened to or being given due respect internationally.
Read 37 tweets
The full monsoon has now arrived in the #HornOfAfrica. Very intense rain has begun in the Nile Basin and will continue for a week or more.

What will happen in the #MiddleEast is less clear, but it will involve a lot of rain and #ArabianStorms. Today's forecasts follow.
This animation shows the flow of rain bearing clouds heading south west across Pakistan which signals the first phase of an event which will intensify significantly over coming days.
This animation shows under wrapped in pulsating bands of storms headed both East and West. It is this intense period of Monsoon activity which is powering the phenomena that his bringing this rain to Yemen, Oman and Saudi Arabia.
Read 40 tweets
Since the last rainfall forecast bulletin on Saturday, the forecast West Sahara rainfall burst has come and gone, and the forecast #ME/#HoA rainfall burst is now about to commence.

Today's rainfall forecasts for #NorthAfrica, #HornOfAfrica and #MiddleEast follow.
First an update on Western Sahara. The peak of the storms came overnight on Saturday morning. Here we see a 6 hour rainfall animation from 2.30am to 8.30am.
And here we see a wider view following sunrise on Saturday morning. If you are curious as to what was forecast Saturday's rainfall forecast thread is quoted below >>
Read 47 tweets
The next two weeks promise to bring astonishing weather to both sides of the Red Sea & across the Sahara. In this weather bulletin I will explain what the models are forecasting.

Today's #NorthAfrica #HornOfAfrica and #MiddleEast rainfall forecasts follow.
In the image above we see part of Arabia and part of the #NileBasin storms - those which feed the Blue Nile/Abbay and the Tekeze basins the source of most of the Nile's flow.
Below we see:
1. All Nile Basin rainfall as of this evening
2. All of this evenings #ArabianStorms
The rainfall we see on both sides of the Red Sea comes mostly from the same source - the monsoon over the Arabian Sea, India and South East Asia.
A satellite image from this morning shows what we currently think to be the cradle of humanity. Where we all come from.
Read 38 tweets
The whole thing I think (IS) Sic!

When Skateboarders say "Sick", it usually means A good thing. .. Almost like saying, "That was Rad" or "That is so sick" ! .. .

I wonder how many people are going to say this picture is "Evil symbolism" ...
Clowns to the left of me, Jokers 2 Image
The right, Here I Am ....

Stuck in the |WI🦌DDLE| with you. Image
Read 20 tweets
Periode. ✍

Why is it so hard to see?
Why is it ao hard for ones to Understand?

The fathers & mothers out there may understand what it's like to be PROTECTIVE over the ones you love ..
People take it as being "Scolded" the way I interact, when it's truly ne being A mirror
Image & PROTECTING the ones I love!

"A Fathers #LOVE for his Children knows no bounds" ..

I have tought others how to change diapers, now it's time for others to do exactly that.. I must protect the ones I love because little to no one else will. To many caught up in their own
Little worlds not caring that good men & women are crying out for help, being somewhat ignored All because ones refuse to BE STILL or they need attention posting about all the stupid distractions taking place in the world today..
All these distraction created so little to none
Read 8 tweets
The convective storms over Ethiopia and Sudanese Nile Basins tonight is remarkably intense. Bringing massive amounts of rain across a huge area, including the #Abbay /#BlueNile basin, on the 4th day of #GERD filling.

Today's #HOA #ME and #NorthAfrica rainfall forecasts follow.
In this wider view you can see the full size of today's rain areas which extended deep into Sudan later in the afternoon.
These two images are at sunset the sizes of the two large convective areas, the eastern one extends well north into Eritrea and covers Tigray and the entire #Abbay Basin. The first image provides an idea of size. Each storm area is larger than the UK and Ireland.
Read 29 tweets
Re @bmj_latest article last week ‘moving beyond controversy’ #LongCovid & #MECFS
Article that imho largely added to & repeated controversy & ignored much recent research
For which I was interviewed & quoted

There r things I REALLY need to make clear
I didnt see or review article prior to publication, I solely approved my quote.
During the lengthy interview, on ‘the debate over exercise & what should be happening’ I shared up to date referenced evidence of science behind PEM, potential harms of GET, debunking of PACE
Rather than respond myself, I highly recommend reading responses to the article, inc @DianeOLeary @DecodeMEstudy @MEResearchUK Dr Shepherd @MEAssociation

Though I was glad of opportunity to warn of dangers of PEM, for full thoughts pls see this video
Read 6 tweets
@MBVanElzakker and I are excited that our new paper on biological factors that may contribute to the development of LongCovid/PASC was published today:…
2/ The paper details mechanisms by which RNA #viruses beyond just #SARS-CoV-2 have be connected to long-term health consequences.
3/ It also reviews literature on acute #COVID-19 and other virus-initiated chronic syndromes such as post-#Ebola syndrome or #ME/CFS to discuss different scenarios for #LongCovid/#PASC symptom development.
Read 10 tweets
In a meeting I watched today, microglia priming was mentioned in #LongCovid and #ME/CFS. It’s important to clarify what “microglia priming” means. Microglial priming does not mean that after a trigger has “cleared” microglia remain perpetually activated
2/ Instead, microglia priming goes like this 👉 When microglia or other glial cells detect #infection, injury, or inflammatory mediators, they enter a state of activation in which they change morphology and release their own neuroexcitatory inflammatory mediators
3/ Then, after activating, they retain a “primed” functional state which causes an even more robust response to *subsequent* infectious/immune/#inflammatory challenges. And as cells, microglia live long lives (they are not replaced as often as many other cell types)
Read 13 tweets
Thanks @DrDavidACox for interviewing me for this article on #LongCovid. There’s also great info in the article on research showing #viral RNA in the brains of patients w/ post-SARS syndrome, and viral reservoirs in patients w/ post-Ebola Syndrome:…
2/ The article reads: “Amy Proal, a microbiologist who runs the @polybioRF which studies the causes of chronic inflammatory diseases, believes that small amounts of #pathogens that linger beyond the reach of the immune system in remote pockets of the body...
3/ “...known as reservoirs or anatomical sanctuaries, are at least partially responsible for a whole range of post-infectious syndromes. This includes long #Covid, but also a number of mysterious illnesses which have puzzled scientists for decades, such as chronic Lyme disease..
Read 14 tweets
Well its hard to know where to begin with today's #MiddleEast and #HornOfAfrica rainfall forecasts.

The action is now further north, and west. Here we see the consequences of the first phase of what appears to be becoming a continuous #WesternSaharaPlume.
An bit of a battle us underway between a high pressure system over Northern Erope and the plume which is entering at the bottom left in this image of Jetstream level 250Hpa 11km high winds.
While the model forecasts remain optimistic that an orderly jetstream may eventually appear, so far this has not happened. And in the meantime these winds are picking up moisture in the tropics and taking it in large quantities to places where its not expected.
Read 27 tweets
The #LongCovid community can learn a lot from those suffering with #MECFS. We should welcome their attempts to reach out- it’s in our interest to collaborate. And if #MECFS patients end up getting the recognition & care they deserve due to #LongCovid research- good I say!
I’m not saying the two conditions are identical. LC is heterogenous- however there is a subgroup of LC sufferers with fatigue who exhibit PEM, the cardinal feature of ME. Both conditions can be associated with #MCAS #POTS sensory overload, stimulus hypersensitivity & severe pain
ME suffers have been stigmatised, ignored & abused by the medical profession, media & wider public. The poorly conducted, discredited #PACE trial recommended Graded Exercise Therapy (GET) & CBT- this has harmed and disabled countless sufferers by its inclusion in ME guidelines.
Read 10 tweets
#GlobalPT there are many opportunities to access 🔊🆓🔊education about #LongCOVID. As #COVID19 ⬆️ & ⬇️ in different parts of the world 🌍 Physios should not loose attention on the long term consequences of this 🦠 virus & 👷‍♀️SAFE rehab... here’s a 🧵 on current resources 💙👇
@WorldPhysio1951 made the #WorldPhysio2021 Congress #LongCOVID discussion session 🔊OPEN ACCESS🔊 and 🔊🆓🔊 for all (thank you @WorldPhysio1951 🙏🏻)…
@PhysioplusEd provide access to their 🔊🆓🔊 course on #LongCOVID (thank you 🙏🏻 @physiopedia for your continued support)…
Read 16 tweets
This is an important talk @resiapretorius gave at the @polybioRF Seminar Series. Her early pilot data (~10 subjects) shows that #LongCovid patients have abnormal microclots in their blood samples that are indicative of endothelial + platelet dysfunction:
2/ The microclots in the LongCovid samples contain serum amyloid A, fibrinogen, complement factors, and cytoskeletal kerratin. Dr. Pretorius has already filed a patent for diagnosing #LongCovid using detection of these deposits. She is also writing a paper on her findings.
3/ This is a cool image from her presentation that shows 1) the blood of a patient before #COVID-19 (healthy) 2) microclots in the patient’s #blood during COVID-19 3) microclots in the patient's blood several months later when they had #LongCovid symptoms
Read 5 tweets
Tonight Extremely Severe Cyclonic Storm Tauktae is already a Cat 3 Hurricane equivalent Cyclone, 24 hours ahead of schedule and tearing up the West Indian coastline on its way north.

Today's #ME and #HOA rainfall forecasts follow. Image
Three more views from the image.

The first shows the positioning of this morning's @NASA Modis picture of Tauktae in relation to the coast. Nearly half the central convection area is over India.

The 2nd shows a wider perspective. & the 3rd provides borders for orientation. ImageImageImage
Further west here are four images from today of the #HornOfAfrica, the #NileDelta, the #Levant and #UAE + #Oman. ImageImageImageImage
Read 18 tweets
@JanetDafoe For years, researchers like Drs. Klimas and Younger have used ME/CFS as comparison groups to leverage funding from other areas. Now that we've used this strategy for advocacy, we delivered the single largest financial opportunity to ME/CFS researchers ever: over $1 BILLION… 1/4
@JanetDafoe $1 BILLION that is now available for ME/CFS researchers to continue their work. And, we have another $100m in the works for medical education, data harmonization, and research regarding disparities and access to care. #LongCOVID is the biggest opportunity for #ME research 2/4
@JanetDafoe At the current rate of NIH funding for ME/CFS, it would take 76+ years to reach $1B. Please watch today's hearing. My heart breaks to see the mistrust, suspicion and in-fighting. Even sadder to see our community attacking others with the same symptoms. 3/4
Read 4 tweets
„Akkumulative Wirkung von Antibiotika“ bes. Fluorchinolone. „Collagen wird nicht mehr gebildet“, „Gastroparese“, „Inneres Zittern im Körper“ „Tinnitus, KOPFgeräusche“, Muskelschwäche, Schmerzen etc. 👉 Diagnose #ME 👉 „wie beim Post COVID Syndrom“ Danke Nachtcafé! @SWRpresse 1/
„Bin gar nicht mehr ich selbst“ „Unfassbar fatal, was da passiert, unfassbar fatale Verläufe“ „kein Leben mehr, nicht mehr lebenswert“ ...

Ja, das Schicksal von Brigitta Anton erinnert mich auch an meine eigene Geschichte. Danke, dass Sie davon berichten! /2

Seit 2008 warnt FDA vor Nebenwirkungen. In Dtld. gibt es zwar einen „rote Hand Brief“, aber es werden trotzdem noch Menschen in ihr Unglück gerissen.

@jesnspahn wenn Sie sich schon nicht für Schwerst Erkrankte einsetzen, dann nehmen Sie das Gift vom Markt! /3

Read 4 tweets
He's right.

It shouldn't take an Oxford educated, white, middle aged, privileged male pillar of the scientific press to get ill before any patient gets taken seriously, but now that @GeorgeMonbiot has arrived, perhaps at last, we can DO SCIENCE on #MECFS

When we DID SCIENCE (in the rest of the world in the last 2 decades, just not in England) we discovered biomarkers. We discovered findable, physical signs, that show measurable changes are present in multiple systems.

Yes. ME has been found. You didn't know that? Ask why not?
To be explicitly clear here, so you can be in no doubt, the words "immunological, cellular and neurological abnormalities" here tell you what has been found.


Broken things that show up if you look in the right places.

Immune system broken things. Cells. Nerves.
Read 17 tweets
This thread supplementing @GeorgeMonbiot's column is arguably even more compelling.

It shows how bias & protectionism intrude on clinical research, bypassing the peer-review system that is there to protect the public.

Too often eminence, not evidence, carries the day

The "friends-of-friends" network guarantees that influential academic figures can effectively mark their own homework, distorting the scientific record and -- for good measure -- undermining the principle of evidence-based clinical practice

#MEcfs #pwme…
An inherent class system empowers privileged professionals to punch down hard on patients who have the temerity to challenge the quality of their clinical work.

In psych fields, this includes the power to dismiss critics as mentally unwell.

Read 11 tweets
Megathread: 1 Trying to unpick reasons why people disengage from those with #chronicillness such as #ME My thoughts below. Taken a couple of months! Feel free to add #neisvoid #pwme #friendship #relationships #MyalgicE #family #ghosting #carers #Grief #DisabilityTwitter #MECFS
2. Fear. They would rather not contemplate how life can be so suddenly derailed. They cannot bear to think about suffering and don't want to face up to such realities
3. Because they love you they find it too hard to contemplate your suffering so shy away from it
Read 16 tweets

✅over een gebrek aan transparantie bij UWV
✅over de achtergronden van UWV-artsen
✅het kan reuze verschil maken bij welke arts je terecht komt
✅daarover gaat dit draadje
✅en ja, ‘moeilijk te objectiveren’ aandoeningen (zoals #ME #CVS) komen ook aan bod

✅als je een oproep krijgt voor een Ziektewet, WIA of Wajong beoordeling
✅heb je geen idee bij wat voor arts je terechtkomt
✅dat kan bijv. een basisarts zijn, een zij-instromer, een arts in opleiding tot verzekeringsarts, een ‘echte’ verzekeringsarts, een bedrijfsarts

✅keuze heb je niet...🤭
✅zou het niet normaal moeten zijn dat je in elk geval van te voren te horen krijgt bij wat voor arts je bent uitgenodigd
✅of dat je dat gewoon ergens kunt opzoeken
✅op de UWV website bijvoorbeeld
✅ik pleitte daarvoor in mijn proefschrift 👇

Read 11 tweets

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