Discover and read the best of Twitter Threads about #myalgicencephalomyelitis
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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 
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.
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
#PEM #MECFS #LongCovid
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)
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
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
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
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)
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)
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)
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)
You'd never guess - from the name - what Chronic Fatigue Syndrome 𝘳𝘦𝘢𝘭𝘭𝘺 is.
A lot of doctors don't know either.
🧵
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
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
#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"?
(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.
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
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
Cal since 1984 @tweetercal
#MillionsMissing
That’s Funding for Biomedical Research & the number of People
#MEAwarenessDay
#MyalgicEncephalomyelitis
#LearnFromME
#MillionsMissing
That’s Funding for Biomedical Research & the number of People
#MEAwarenessDay
#MyalgicEncephalomyelitis
#LearnFromME
Sally since 2006 @Sally_writes
The #MillionsMissing
#MyalgicEncephalomyelitis
#MEAwarenessDay
#LearnFromME
The #MillionsMissing
#MyalgicEncephalomyelitis
#MEAwarenessDay
#LearnFromME
📢 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.
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.
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).
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
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
#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…
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
bit.ly/MMAFH
#MyalgicEncephalomyelitis #LongCovid #MECFS
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.
Cette maladie est imprévisible, sournoise, fluctuante, et réduit considérablement les liens sociaux.
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.
This disease is unpredictable, sneaky, fluctuating, and greatly reduces social connections.
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.
#meawareness
#meawareness
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.
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.
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
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.
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,
He SIGHED. At my list of symptoms. Said that this was "a lot" like I was exagerating, inventing,
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
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.
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.
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
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
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
You can help by liking and/or retweeting this video. This 2017 TED talk features @jenbrea.
#MyalgicE #MyalgicEncephalomyelitis
Day #1
@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.
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This film will give you an introduction to PEM (Post Exertional Malaise).
Once you've understood what PEM is… twitter.com/i/web/status/1…
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… twitter.com/i/web/status/1…
@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"… twitter.com/i/web/status/1…
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"… twitter.com/i/web/status/1…
🧵
May is Myalgic Encephalomyelitis (M.E.) Awareness Month. You can help by liking and/or retweeting this image.
#MyalgicE #MyalgicEncephalomyelitis #Day1
May is Myalgic Encephalomyelitis (M.E.) Awareness Month. You can help by liking and/or retweeting this image.
#MyalgicE #MyalgicEncephalomyelitis #Day1
2/
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
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
3/
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
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
By 1990 in Australia, the 'CFS' title had taken hold, but it was being studied as a disease of the immune system.
GOODBYE YUPPIE FLU: CFS 'NOT IN THE MIND'
Andrew West
Sydney Morning Herald 13 September 1990
#MECFS
#MyalgicEncephalomyelitis
#pwME
Thankyou @ABrokenBattery
GOODBYE YUPPIE FLU: CFS 'NOT IN THE MIND'
Andrew West
Sydney Morning Herald 13 September 1990
#MECFS
#MyalgicEncephalomyelitis
#pwME
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.
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.
In Australia in the 80s #MyalgicEncephalomyelitis (or 'Post-viral syndrome') was being investigated as a disease causing immune dysfunction.
MYSTERY ILLNESS MAY AFFLICT THOUSANDS
Sydney Morning Herald, 17 June 1987
#pwME
#MECFS
Thanks @ABrokenBattery for digging this up!
MYSTERY ILLNESS MAY AFFLICT THOUSANDS
Sydney Morning Herald, 17 June 1987
#pwME
#MECFS
Thanks @ABrokenBattery for digging this up!
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,
@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
@keithgeraghty
@davidtuller1
@b_m_hughes
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
@keithgeraghty
@davidtuller1
@b_m_hughes
@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”
s4me.info/threads/paul-g…
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”
s4me.info/threads/paul-g…
@thepollenberry @liverpoolpost @jlaverick99 @PaulGarnerWoof @keithgeraghty @davidtuller1 @b_m_hughes ☑️
The @liverpoolpost appears to have been Waddelled 😉
#malingering
#misinformation
@ScottishLegal
scottishlegal.com/articles/david…
The @liverpoolpost appears to have been Waddelled 😉
#malingering
#misinformation
@ScottishLegal
scottishlegal.com/articles/david…
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.
1/
No. They had chronic fatigue.
Not to be confused with what I and millions of others have, a debilitating multisystem illness #MyalgicEncephalomyelitis or #MECFS.
1/
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.)
2/
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.)
2/
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.
3/
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.
3/
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)
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)
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)
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)
🧵
"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
Free
mdpi.com/2227-9032/10/1…
I thought this was very good. Will post extracts.
#MEcfs #CFS #MedEd
1/
"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
Free
mdpi.com/2227-9032/10/1…
I thought this was very good. Will post extracts.
#MEcfs #CFS #MedEd
1/
