Discover and read the best of Twitter Threads about #PwME

Most recents (24)

#IIMEC15 Dr David Systrom

ME/CFS and Long COVID: Insights from Invasive
Cardiopulmonary Exercise Testing
Invasive CPET - exertional intolerance cause elucidated well by this test

mouthpiece measuring gases

catheters - right internal jugular (important part of the test), left wrist to look at blood pressures, measure lactate & other biomarkers
look at VO2 max, patients with ME and LC mildly impaired 70% of expected. If you stop there, might think you have simple deconditioning, but use of catheters show it's not.

Can rule out pulmonary mechanical limit to exercise. Don't see in ME or LC, unless the LC has been on……
Read 16 tweets
Something I think is super obvious to #pwME (and maybe ME clinicians or researchers) but not to the rest of the people around us is that often we can Do The Thing.


We can Do The Thing once but we can’t repeat Doing The Thing on an ongoing/recurring basis.
Some examples:

I showered today. I didn’t even crash much yet.

But I can’t maintain a daily or even weekly shower routine.

I could spend an hour responding to messages and emails today and probably have only a minor crash mostly resolved with a nap.

But I couldn’t spend an hour responding to messages or emails every day (like, for example, how I would be expected to function at a job).
Read 15 tweets
🧑‍⚕️: #LongCovid ist psychosomatisch.
(gehört zu den funktionellen Körperbeschwerden)

🛌: Nein! Da stimmt körperlich was nicht!

🧑‍⚕️: Was wehrt ihr euch gegen die Tatsache, dass bei Krankheit die Psyche IMMER eine Rolle spielt?
(Depression, Bewältigung, PTBS…)

🛌: *Twittersturm*
Ich glaube, wir müssen das noch ein paar Jahre schreiben, damit es sich auch wirklich einprägt:

Das Problem, wenn #pwME/#pwLC/#pwPV gesagt wird, etwas wäre psychosomatisch, ist nicht, dass wir uns
psychischer Aspekte und Folgen der Erkrankung nicht bewusst wären, sondern, dass es um das Konzept der sogenannten "funktionellen Körperbeschwerden" geht, das weder ethischen Mindestansprüchen genügt, noch logischen Sinn ergibt.
Read 22 tweets
I can’t tweet much just now. I’m aware I haven’t tweeted on ME awareness day&much in general.

I have a very sick child.

But wanted to highlight
- risk of long Covid after 1 infection is 10%
-after reinfection is 20% (1 in 5)
Horrendous statistics
Protect your brain
To read more of spike protein in the brain see here…

To give up mitigations in healthcare when we know spike protein is accumulating in peoples brains? It’s unethical.
See more from @TheWHN on the ethics&dangers of this…
Also watch @M_Heffernan on ‘wilful blindness’ because this is where we are at.…
Read 6 tweets
Link to the Times Radio programme is here:…
Interview is at 02:15:20
I'll be interested to read this report to see whether it tallies with what @WAMESMECFS discovered last year:…
Read 8 tweets
GPCR Autoantibodies circulating the blood triggering neuroinflammation of the autonomic nervous system and small fiber nerves that control the body’s functions for daily living. Breaching Blood Brain Barrier and Gut Barriers to induce more neuroinflammation and dysfunction.
These same autoantibodies triggering microclots to form in some people. The autonomic dysfunction altered the baroreceptor reflex and now the body compensates by either altering blood pressure or heart rate in order to get blood back to the heart.
The dysfunction leads to narrowing of the small vessels and altered red blood cell shape which causes hypoxic conditions in tissues and without proper oxygen perfusion the body cannot maintain proper aerobic metabolism to make a majority of the body’s energy (ATP).
Read 21 tweets
1/ New @patientled paper alert!

Reproductive health issues after COVID are well known among #LongCovid patients but are not adequately studied.

For @FrontRehSci, we reviewed studies on repro health impacts of Long COVID & associated conditions in women:…
2/ There has been a huge need for this work and we're excited to say it is already the most viewed article published by @FrontRehSci so far in 2023! #LongCovid Four-panel diagram listing ...
3/ Studies show that people with #LongCovid and associated illnesses including ME/CFS, POTS, and CTDs like EDS report multiple menstrual health issues including disabling periods & severe period pain. #pwME #NEISvoid
Read 10 tweets
So Endothelial dysfunction is the culprit for reduced oxygen perfusion to the tissues which in turn leads to dysfunctional aerobic metabolism and fatigue. Image
The Blood Brain Barrier consists of these Endothelial Cells and has been found breached in Covid Long haulers. ImageImage
What regulates the functions of the endothelium? Partly the GPCR receptors of course. Specifically the Sympathetic nervous system which is part of the ANS. Our small vessels are now narrowed due to the endothelium dysfunction.… ImageImage
Read 7 tweets
This week, @scotgovhealth published findings from an analysis of surveys issued to NHS Health Boards in Autumn 2022, to understand existing support for #pwME (or lack of, as we would argue) and implementation of the 2021 NICE guideline.

Thread 🧵 [1/4]…
Pleased to see the publication of the report, & the acknowledgement that the survey was a direct result of #MEAction Scotland's meeting with the then Cabinet Secretary for Health, @HumzaYousaf.

We'll be calling on @MathesonMichael & @jenni_minto to take this work forward. [2/4]
Disappointing to see that 4 Health Boards chose not to respond - @NHSHighland, the largest Board geographically, @NHS_Lothian, one of few identified as having a specific support pathway, @NHSaaa & @NHSGrampian. Also, not all of the 10 who did respond answered all questions.
Read 4 tweets
Seeking #pwME (pre-COVID w/ or wo/ viral trigger OR COVID-triggered) for a £ online questionnaire examining medical stigma & social media use. Info below, direct questionnaire link & unroll @ end of 🧵. Please RT unrolled 🧵#MECFS #myalgicE #LongCovid #pwLC #NEISVoid(1/18)
Compensation: £15 Amazon voucher for full completion (emailed to you) with partial compensation available (2/18)
Eligibility criteria: a) 18 years+, b) View &/or engage with social media content posted by &/or about ME/CFS &/or Long-COVID at least weekly, c) Currently reside in/received diagnosis, & most or all care in UK (3/18)
Read 19 tweets
I'm so tired of being told : you need to change doctors, find someone who will listen to me etc. Do you know know what it's like in reality ?
First of all. There's no one available. They don't take new patients. Appointments are in months or years. Second money. Third if you
have severe mecfs or very severe you can't go and just find a new doctor. 4. i did that for years. No one listened. No one. Or if one did they had no Idea what to do or put me in danger or sent me to other doctors who treated me like not a human. 5. Each travel to another apptmt
undergoing painful exams being gaslit for years and treated like i wasn't sick it was not enough my pain concerns and words never mattered. 6. The crashes after each apptmt. Physical pain. Suffering. Until being bedbound for weeks and months. 7. The mental toll of all of this and
Read 24 tweets
- CBT en GET is not effective with ME(cfs) but harmful.

(It is however useful to separate ME from CFS more in🧵)

It is not effective for many Longcovid patiënts. Because many fulfill ME(CFS) criteria

@nrc @refdag
@Rovers_Chantal (leestip)…
In the past, CBT and GET were studied and recommended for ME/CFS on the basis of the disease theory that “the symptoms and disability of CFS/ME are perpetuated predominantly by unhelpful illness beliefs (fears) and coping behaviors (avoidance [of activity]),”
leading to considerable deconditioning. However, GET and CBT studies have been widely criticized for their methodology, inadequate tracking of harms, and a disease theory that conflicts with the evidence of multisystem biologic impairment.
Read 19 tweets
Today (well, yesterday now) is #MEAwarenessDay. I've been one of the #MillionsMissing since age 16. I turned 23 last week.

There are so many things I could say about life with #SevereME, so many alarming statistics & horrifying, heartbreaking stories. (1/8) Image
But I don't have the physical or cognitive capacity to. So if there's just one thing you take away from this thread, whoever you are, please know:

We were and are people. We had lives, and often still have big hopes & dreams despite being mostly or completely bedbound. (2/8)
Most of us cannot tolerate basic sensory input so we must live in darkness, silence, isolation. Many are unable to speak and/or communicate due to neurological effects. Some cannot tolerate a comforting hug, a gentle touch – and this disease happens to children too. (3/8)
Read 8 tweets
You'd never guess - from the name - what Chronic Fatigue Syndrome 𝘳𝘦𝘢𝘭𝘭𝘺 is.
A lot of doctors don't know either.
According to current research, #MyalgicEncephalomyelitis (ME/CFS), otherwise known as "Chronic Fatigue Syndrome," is a neuro-immune condition with fluctuating physical and cognitive symptoms. The gloved hands of a scien...
Some people get ME/CFS after a virus, but in others it develops gradually without a known trigger.
The symptoms can range from mild to severe, it’s often highly disabling, and it is not rare. The exact causal mechanisms haven't been nailed down yet, but research is getting closer
Read 12 tweets
(1/8) If someone had told a few years ago that I will suffer from an illness called "chronic fatigue syndrome", I would never have estimated its severity. I might have thought of people getting tired a little faster.
What do you think of when you hear "fatigue"?
(2/8) The feeling after a long day at work or after exercising, right? #ME(CFS) couldn't be further away from this feeling. The first time you heard "CFS", did you think of a serious illness like end-stage cancer or AIDS? Probably not.
(3/8) However, the level of suffering is similar for the most severely affected people with "#MECFS".
People know the feeling of #fatigue & therefore falsely draw the conclusion of being able to suspect what the illness feels like.
Read 8 tweets
Vor etwa anderthalb Jahren hat die aktuelle 🚦-Regierung ihren Koalitionsvertrag abgeschlossen und sich darin vorgenommen, für #MECFS und #LongCOVID ein deutschlandweites Netzwerk an Kompetenzzentren zu schaffen. #MECFSAwarenessDay #MEAwarenessDay
👇… Zitat aus Koalitionsvertrag...
.@LongDeutschland und die DG ME/CFS haben infolgedessen einen Nationalen Aktionsplan ausgearbeitet, der darlegt wie der Aufbau der Kompetenzzentren, der Ausbau von Forschung, sowie die Aufklärung der Ärzt*innenschaft und Öffentlichkeit gelingen kann.
@LongDeutschland Im Oktober 2022 haben LCD und DG ME/CFS den Aktionsplan geupdatet und einzelne Konzepte vorgelegt für

🏥 Versorgung:…

🔬 Forschung:…

📣 Aufklärung:…
Read 10 tweets
Post-exertional malaise (PEM) is something that everyone with M.E. experiences.

PEM can have a profound impact on the daily lives of individuals with severe and very #SevereME. World ME Day. Sensory overl...
For people with #SevereME, sensory overload, such as bright lights, loud noises, and strong smells can severely exacerbate #MECFSsymptoms, including triggering PEM, which can last for days, weeks or even permanently.
#pwSevereME need to take critical measures to prevent sensory overload from causing PEM. For example, they may need to limit exposure to triggering stimuli, use earplugs or noise-cancelling headphones, wear sunglasses, and reduce exposure to screens and technology.
Read 5 tweets
📢 Today is #WorldMEDay, a day dedicated to learning about, raising awareness of, and campaigning around #MECFS.

This year, the @WorldMEAlliance campaign aims to ensure the harmful effect of pushing harder is the first thing that comes to mind when someone hears about M.E. Quote from Sonya Chowdhury:...
For #pwME, PEM can be a devastating consequence of trying to engage with the world, significantly limiting their ability to participate in daily life. The impact can be so severe for some that it can result in a loss of independence, requiring them to receive full-time care.
It's now estimated that 17-30M people worldwide live with M.E., but it's believed to have doubled since the #COVID19 pandemic began. Shockingly, there are now 65M people living with #LongCOVID, with 50% meeting the diagnostic criteria for M.E. & a growing number experiencing PEM.
Read 4 tweets
When it comes to M.E., it’s crucial to understand that pushing harder can make you sicker. This is a fundamental aspect of the condition that is often misunderstood by those who are unfamiliar with it.

For #pwSevereME, PEM can be particularly devastating. Quote by Carole: "Havi...
Individuals with #SevereME are usually housebound or bedbound and some require round-the-clock care. Activities of daily living like using the toilet, eating, or brushing your teeth can exacerbate the already extreme & debilitating symptoms that these people live with every day.
Carole, who has had #SevereME for 30 years, shared her experience with PEM.

For #WorldMEDay, we want to raise awareness and advocate for greater representation for #pwSevereME and very severe M.E.
Read 5 tweets
If you’re a researcher & interested in making a difference in the field of #MECFS, then this opportunity could be for you.

In 2022, the @PSPforMECFS, led by #pwME, their carers & clinicians, identified the top 10+ research priorities, including post-exertional malaise (PEM). black and white photo of ma...
The @The_MRC which co-funded the ME/CFS Priority Setting Partnership, is looking to encourage high-quality funding applications to any of their research board grant or fellowship opportunities.
Building a portfolio of #MECFS research has been a priority for the MRC for several years.

They'd particularly welcome proposals that address 1 or more of the research areas identified by the ME/CFS Priority Setting Partnership.

Read about these here:
Read 4 tweets
#MEAction is hosting a demonstration at the Washington Monument on May 12th! Join us there in person or show your support from home! Together, we will make our voices heard so we can command the attention of the government and the press. Find out more at
The art installation will be at Washington Monument (northeast side) from 9 am to 3:30 pm ET.

The press conference will be held at 2 pm ET in DC & also livestreamed via our social media & on our page. (Press question, Email )…
We have an Activism from Home Toolkit for everyone joining in the critical effort of making sure our #MillionsMissing stories & effort are shared far & wide. #pwME #pwLC

#MyalgicEncephalomyelitis #LongCovid #MECFS
Read 4 tweets
What I mean is that they saw me before. They saw me sick. They saw me moderate, mild, severe. They heard and witness the dozens of symptoms accumulating for years. They saw it. I didn't know what was happening to me. I checked SO MANY OF the mecfs symptoms for YEARS.
doctors even diagnose me orthostatomic hypotension, orthostatic intolerance, then pots. the raynauds, like a lot of these conditions. But they did nothing about it. "It will disappear" Guess what ? It got worse. i even had a test for an illness that causes red blood cells to not
be able to transport the oxygen through the body. like they all saw that something was wrong but it was "nothing"

Of course they kept blaming the fact that I was sick and getting worse on me. "I wasn't doing enough" while I was overworking and probably in crashes all the time.
Read 7 tweets
My doctor dismissed me, my wordsw my symptoms, for 10 years (20 if you take the rest) then didn't see me for a few years.
Fast forward i'm very severe ME almost dying. He came because i've been almost dying for months. After YEARS.

He did ask me why he hadn't see me these past
few years.
Well I became housebound then completely bedridden, bedbound, because they didn't listen to me.

This was such an insult.

When I gave him (again) the list of symptoms I've been having and complaining about for 10 years, the reply was so insulting.
I was 100% bedridden. For weeks, months. At this point. In the dark. No energy. Difficulty breathing and speaking. Out of breath. Hurting like hell. Lost a lot of weight. Dehydrated.

He SIGHED. At my list of symptoms. Said that this was "a lot" like I was exagerating, inventing,
Read 7 tweets
There's a lot of people with severe and very severe ME. Please consider them. Don't forget about them, about us. It's not just 10 people. It's millions of us. Missing. Here but not really here
We do exist. There's so many of us

#MyalgicEncephalomyelitis #MECFS #severemecfs #pwME
the representation lacks a lot of the reality of the numbers, the %, the reality of severe and very severe people with #MECFS
Those who are bedridden. Almost paralysed. Who can't go protest. Who do not have carers. Can't express themselves. Are kept isolated.
Who can't draw on pillow cases.
We, you, need to include those in your fight. And realize that's they're not rare cases. We're millions.
Read 6 tweets

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