Discover and read the best of Twitter Threads about #myalgicencephalomyelitis

Most recents (24)

Wondering about the terms PEM or pacing? Seen #StopRestPace & were curious as to what it referenced? Been in our community a long time & want easy ways to explain these concepts? Perhaps you have seen pacing misused & want to clear that up. We hope this thread helps! #pwME #PwLC A helpful thread on PEM, pa...
Post-exertional malaise (PEM) is the cardinal symptom of ME/CFS. PEM is a flare of symptoms and/or the appearance of new symptoms after exertion, often presenting 24 hours after the triggering event. Physical activity, cognitive overexertion, & sensory overload can trigger PEM. What is PEM? Post-exertiona...
Sometimes exertion is misunderstood as exercise. Exertion is defined here as anything that stresses or strains the system. No trigger can be controlled all of the time. The goal of pacing is to MINIMIZE post-exertional malaise rather than eliminate it.
#PEM #MECFS #LongCovid Exertion does not equal exe...
Read 7 tweets
So many people are so attached to the malingerer narrative. In a BBC 2013 “Great Lives” podcast on Florence Nightingale the museum professional who chose her describes the statistician and sanitary reformer as “someone who it seems to me almost revels in her suffering’ (1/x)
Mark Bostridge, who wrote the 2008 Nightingale biography responds (bless him), “I think that’s unfair, because she was seriously ill and for decades historians and biographers portrayed Nightingale as a malingerer…” (2/x)
Bostridge mentions chronic brucellosis, brings up spondylitis, and both the museum professional and the host express skepticism. (3/x)
Read 15 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
1/ I don’t know which medic needs to hear this, but post-exertional malaise (#PEM) is NOT fatigue.

Short explanatory 🧵

#MedEd #MedTwitter #TeamGP #ME #LongCovid
2/ Patients with #MyalgicEncephalomyelitis and approximately 50% of patients with #LongCovid experience Post-Exertional Malaise (#PEM), also called, Post-Exertional Symptom Exacerbation (#PESE)
3 #PEM or #PESE is a worsening of symptoms after any form - physical, cognitive, emotional - exertion.

#PEM or #PESE is NOT fatigue.
Read 8 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
2023 #MEAwarenessDay

A 🧵 of people with #MyalgicEncephalomyelitis for DECADES

Lives on pause
QoL drastically changed
Whether mild/moderate/severe/very severe ME
We have all been affected

No treatment
No cure
Is this FAIR?

#RingFenced funding needed for #BiomedicalResearch ImageImage
Read 8 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
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
Avec le #CovidLong & l'#EncephalomyeliteMyalgique j'ai appris que je ne peux plus rien prévoir à l'avance.
Cette maladie est imprévisible, sournoise, fluctuante, et réduit considérablement les liens sociaux. Imageje ne peux plus rien prévoi...
With #longcovid & #MyalgicEncephalomyelitis I've learned that I can't plan anything in advance.
This disease is unpredictable, sneaky, fluctuating, and greatly reduces social connections. With #CovidLong & #MyalgicE...Image
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
These results are what I was expecting.

I asked the question because that night I started reading the original papers from the 50s & they made me open to the possibility of the answer being no. 1/8
What I read didn't sound like the #MECFS that I know. There're many possible reasons for that. Maybe the disease morphed into something more similar after the original case reports. Maybe issues like PEM were actually there, but they didn't know to look for them. 2/8
Maybe since they originally thought it was poliomyelitis they ended up looking for signs & symptoms that come from that. 3/8
Read 8 tweets
May is Myalgic Encephalomyelitis (ME) Awareness Month.

You can help by liking and/or retweeting this video. This 2017 TED talk features @jenbrea.

#MyalgicE #MyalgicEncephalomyelitis

Day #1 Image
@jenbrea 2/

May is Myalgic Encephalomyelitis (ME) Awareness Month.
You can help by sharing and/or liking this video. It is 3 minutes 5 seconds long.

This film will give you an introduction to PEM (Post Exertional Malaise).

Once you've understood what PEM is……
@jenbrea 3/
May is Myalgic Encephalomyelitis (ME) Awareness Month.

You can help by sharing and/or liking this video (9 minutes) This is ME (2020) "A short film exploring 'Spoon Theory' told through the eyes of a young woman struggling with ME/Chronic Fatigue Syndrome"……
Read 20 tweets
May is Myalgic Encephalomyelitis (M.E.) Awareness Month. You can help by liking and/or retweeting this image.

#MyalgicE #MyalgicEncephalomyelitis #Day1 Image
May is Myalgic Encephalomyelitis (M.E.) Awareness Month.

You can help by retweeting and/or liking this image.

Day #2
#MEcfs #CFS #MyalgicE #MyalgicEncephalomyelitis #ChronicFatigueSyndrome Image
May is Myalgic Encephalomyelitis (M.E.) Awareness Month.

You can help by re-tweeting and/or liking this image.

Day #3

#MEcfs #CFS #MyalgicE #MyalgicEncephalomyelitis
#ChronicFatigueSyndrome MUSCLE Myalgic Encephalomye...
Read 5 tweets
By 1990 in Australia, the 'CFS' title had taken hold, but it was being studied as a disease of the immune system.


Andrew West
Sydney Morning Herald 13 September 1990


Thankyou @ABrokenBattery
New research into the chronic fatigue syndrome (CFS) has exploded the long-held misconception that it is a psychiatric condition.

There is now evidence showing CFS is a true physical ailment, affecting people genetically predisposed to certain environmental conditions.
The thesis by Sydney doctor Andrew Lloyd, of Prince Henry Hospital was supervised by three leading immunologists professors John Dwyer (the AIDS expert), Denis Wakefield and Clem Boughton of NSW University.
Read 15 tweets
In Australia in the 80s #MyalgicEncephalomyelitis (or 'Post-viral syndrome') was being investigated as a disease causing immune dysfunction.


Sydney Morning Herald, 17 June 1987


Thanks @ABrokenBattery for digging this up! Image
A disease of the immune system may be responsible for symptoms once attributed simply to hypochondria. PETER QUIDDINGTON reports
A STRANGE affliction of the human immune system - not unlike a mild form of AIDS is thought to affect thousands of people in NSW, though most people do not know what they suffer from. Nor, in most cases, do their doctors. There is no simple diagnostic test for the disease,
Read 23 tweets
@thepollenberry @liverpoolpost @jlaverick99 @PaulGarnerWoof ☑️

Garner had post viral fatigue in March’20 and was scuba diving abroad a few months later.

Short #LongCovid is not #MyalgicEncephalomyelitis

Garner is a #Gaslighting troll
A disgrace to #academia
A charlatan

@b_m_hughes  Garner had post viral fati...
@thepollenberry @liverpoolpost @jlaverick99 @PaulGarnerWoof @keithgeraghty @davidtuller1 @b_m_hughes ☑️

Garner is a confused character who fell under the influence of Professor Sir Simon Wesley

”It is only human for doctors to view the public as foolish, uncomprehending, hysterical or malingering”…
Read 3 tweets
Had someone message me to say that they cured themselves with exercise so they are happy to see these studies.

No. They had chronic fatigue.

Not to be confused with what I and millions of others have, a debilitating multisystem illness #MyalgicEncephalomyelitis or #MECFS.

One is a symptom of MANY conditions. (Chronic fatigue.)

One is a serious and complex multisystem illness that leaves us in a terrible state with up to 100+ symptoms and several comorbidities. (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.)

The name CFS causes confusion regularly. 😞

It leads to more confusion (and significant harm) when researchers new to #MECFS don’t understand the difference and include people with only the *symptom* of chronic fatigue in their studies.

Read 30 tweets
Do ppl understand that ppl die from #MECFS?
Common cause is starvation as the stomach shuts down.

We're now seeing trend amongst #LongCovid patients; where many of those severely ill are seeing huge rapid weight loss. I'm begging parents to take action early if your child 1)
Has the signs of #LongCovidKids.
Majority of ppl who become severe do not start out that way. Rather they steadily decline.
Common cause of decline is pushing through PEM.This is why we talk about the importance of early diagnosis. Promise you as a parent if your child becomes 2)
Severely ill w LC, you'll need to know you've done everything to care for them from the start. There are many parents out there w sick children who
a) dont know its LC because they aren't educated about LC
b) are in denial.
Those children likely to become more sick as they 3)
Read 8 tweets
"What Primary Care Practitioners Need to Know about the New NICE Guideline for #MyalgicEncephalomyelitis/#ChronicFatigueSyndrome in Adults" (Dec 2022)

2 of 4 authors are MDs


I thought this was very good. Will post extracts.
#MEcfs #CFS #MedEd
1/ Screenshot of abstract

My overview:

Paper has lots of useful points & also helpful overall to show how the NICE guidelines for ME/CFS have changed dramatically in the UK from the 2007 version, with the updated approach being much more sympathetic regarding helping patients.

#MyalgicE #PwME #CFSME

“The new NICE guideline for ME/CFS…recognis[es] the prejudice and stigma that people with ME/CFS often experience in the absence of any specific diagnostic test.”

#mecfs #cfs #neurome #cfsme #myalgice #pwme
Read 26 tweets

Related hashtags

Did Thread Reader help you today?

Support us! We are indie developers!

This site is made by just two indie developers on a laptop doing marketing, support and development! Read more about the story.

Become a Premium Member ($3.00/month or $30.00/year) and get exclusive features!

Become Premium

Too expensive? Make a small donation by buying us coffee ($5) or help with server cost ($10)

Donate via Paypal Become our Patreon

Thank you for your support!