Discover and read the best of Twitter Threads about #pwME

Tess Falor (Ale Frost), Ph.D. | @RemissionBiome

@tessfalor

#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… twitter.com/i/web/status/1…

Read 16 tweets

Rachel Bean, dauer formation

@colocha_rachel

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.

Once.

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.

#MEcfs

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

Kerstin Wollec

@KWollec

🧑‍⚕️: #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.

https://twitter.com/SabineHammer24/status/1663569643624095744

Read 22 tweets

Dr Claire Taylor

@drclairetaylor

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

erictopol.substack.com/p/the-brain-an…

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

whn.global/scientific/the…

Also watch @M_Heffernan on ‘wilful blindness’ because this is where we are at.

ted.com/talks/margaret…

Read 6 tweets

Lucibee 🌻

@_Lucibee

Link to the Times Radio programme is here: thetimes.co.uk/radio/show/202…
Interview is at 02:15:20

https://twitter.com/actionforme/status/1663081494405959684

https://twitter.com/ABrokenBattery/status/1663099050915160064

I'll be interested to read this report to see whether it tallies with what @WAMESMECFS discovered last year: wames.org.uk/cms-english/ni…

Read 8 tweets

Brad

@Bradgolf1216

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

Patient-Led Research Collaborative

@patientled

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: doi.org/10.3389/fresc.…

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

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

Brad

@Bradgolf1216

So Endothelial dysfunction is the culprit for reduced oxygen perfusion to the tissues which in turn leads to dysfunctional aerobic metabolism and fatigue.

The Blood Brain Barrier consists of these Endothelial Cells and has been found breached in Covid Long haulers.

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. news-medical.net/whitepaper/201…

Read 7 tweets

#MEAction Scotland

@meactionscot

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]
gov.scot/publications/m…

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.
[3/4]

Read 4 tweets

Emma Portch

@e_portch

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

In the abyss. v severe #mecfs fighter (+9 years)

@AbyssPearl

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

leonline

@leonline007

- 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)

mayoclinicproceedings.org/article/S0025-…

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

Thisbe (she/they)🧑‍🦽🦓🏳️‍🌈🎶✒️

@BeesBattle

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)

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

Patients with Power

@PtsWithPower

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.

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

Leon

@leowmya

#MEAwarenessDay
(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

Dt. Ges. für ME/CFS

@dg_mecfs

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
👇
mecfs.de/koalitionsvert…

.@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.
mecfs.de/aktionsplan/

@LongDeutschland Im Oktober 2022 haben LCD und DG ME/CFS den Aktionsplan geupdatet und einzelne Konzepte vorgelegt für

🏥 Versorgung: mecfs.de/wp-content/upl…

🔬 Forschung: mecfs.de/wp-content/upl…

📣 Aufklärung: mecfs.de/wp-content/upl…

Read 10 tweets

Action for M.E.

@actionforme

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.

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

Action for M.E.

@actionforme

📢 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.

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

Action for M.E.

@actionforme

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.

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

Action for M.E.

@actionforme

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).

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: ow.ly/zylC50Ojf3Y

Read 4 tweets

#MEAction Network

@MEActNet

#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 millionsmissing.org.

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 press@meaction.net )
meaction.net/event/millions…

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
bit.ly/MMAFH

#MyalgicEncephalomyelitis #LongCovid #MECFS

Read 4 tweets

Discover and read the best of Twitter Threads about #pwME

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Discover and read the best of Twitter Threads about #pwME

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