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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
'Some long-covid patients oppose an exercise trial aiming to help them'
'NIH’s RECOVER initiative plans to study exercise as a potential treatment for long covid. Some long-covid patients say exercise does them more harm than good.'
washingtonpost.com/wellness/2023/…
'NIH’s RECOVER initiative plans to study exercise as a potential treatment for long covid. Some long-covid patients say exercise does them more harm than good.'
washingtonpost.com/wellness/2023/…
"Some long-covid advocates, however, say that any exercise trial could be potentially dangerous for long-covid patients with myalgic encephalomyelitis (ME/CFS), also known as chronic fatigue syndrome."
Advocates now worry that long-covid patients with ME/CFS could be similarly harmed if they take part in any exercise study.
Long COVID Justice, a patient advocacy group, started a petition at the end of last year calling for the NIH trial to be stopped. #MEAction, a nonprofit
Long COVID Justice, a patient advocacy group, started a petition at the end of last year calling for the NIH trial to be stopped. #MEAction, a nonprofit
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…
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]
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]
[3/4]
#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
Nature published an article about our communities' (#longCOVID and #MECFS) major concerns about studying exercise therapy for #LongCovid.
#MEAction had numerous conversations with the reporter to explain why treating PEM with exercise therapy is harmful.
bit.ly/3Kp5dis
#MEAction had numerous conversations with the reporter to explain why treating PEM with exercise therapy is harmful.
bit.ly/3Kp5dis
"In a world where there’s hundreds of things to trial, why are we choosing this one thing that we know has the potential to cause harm to a substantial portion of patients?” asks Lisa McCorkell, a co-founder of the Patient-Led Research Collaborative for long COVID. @patientled
#MEAction has sent several letters to RECOVER explaining our concerns about this trial, and why it's imperative that people with PEM are excluded: meaction.net/wp-content/upl…
I just heard someone recovering from acute Covid say that they can't exercise for a month to reduce the chances of developing Long Covid. That's not quite right -- though yay for knowing the link between exertion and LC! Here are some guidelines:
-- Until you feel 100%, stop the moment you think, "I'm a little tired." Not five minutes later. If you can, sit or lie down when you get tired. (Being horizontal helps dysautonomia.)
-- This counts not just for exercise, but for all exertion, physical, mental or emotional.
-- This counts not just for exercise, but for all exertion, physical, mental or emotional.
-- Monitor for feeling worse the next day, either increased fatigue or any other symptom. You might be experiencing post-exertional malaise. So if you feel lousy, consider your previous day's activities and think about if you need to scale back.
TW: death, severe illness
Here to support #DontLetMEDie! Let's talk about severe ME.
ME, usually #MECFS in the US, is a neurological disease initiated by infection ~80% of the time. Because it's neurological, it presents with symptoms in every system. 🧵
Here to support #DontLetMEDie! Let's talk about severe ME.
ME, usually #MECFS in the US, is a neurological disease initiated by infection ~80% of the time. Because it's neurological, it presents with symptoms in every system. 🧵
The quality of life in people with #MECFS is low on the median. 🧵#DontLetMEDie
Severe ME is extraordinarily impairing. Depicted are Merryn Crofts (L) and Whitney Dafoe (R) with severe ME.
Source is: me-pedia.org/wiki/Severe_an….
QOL & symptom survey instruments often aren't designed to capture debility this severe.
🧵#DontLetMEDie
Source is: me-pedia.org/wiki/Severe_an….
QOL & symptom survey instruments often aren't designed to capture debility this severe.
🧵#DontLetMEDie
After 6 weeks in hospital with severe gastro issues and needing my PEJ tube resited. They believed I was drug seeking the first 2 1/2 weeks because I was asking for antiemetics that worked. Even though they saw my PEJ wasn't right, they didn't apologise they booked it in before
the media ran my story which they knew about. Being ignored and then suddenly rushed in on a Saturday night? Erm ... not worrying at all!
So they have got 2 psychiatrists involved regardless of I want them in the background or not. This I was told didn't need my consent!
So they have got 2 psychiatrists involved regardless of I want them in the background or not. This I was told didn't need my consent!
I mentioned I had ME to the consultant and next thing I have 2 pysch, the head quack actually told me the PACE trial wasn't flawed and that pyschs just wanted to help PwME!! He didn't like that I was a campaigner for those of us living with disabilities! He also told me that I
The World ME Alliance（世界ME同盟）に加盟しました！
加盟団体は、#MEAction のような国際的なネットワーク、The European ME Coalitionのようなヨーロッパの患者団体連合、北米、ヨーロッパ、南アフリカ、ニュージーランドの患者団体です
worldmealliance.org
#筋痛性脳脊髄炎 #MECFS
加盟団体は、#MEAction のような国際的なネットワーク、The European ME Coalitionのようなヨーロッパの患者団体連合、北米、ヨーロッパ、南アフリカ、ニュージーランドの患者団体です
worldmealliance.org
#筋痛性脳脊髄炎 #MECFS
World ME Allianceは、国内および国際レベルで #MECFS 患者に良い変化をもたらすために協力します
WHOは、MEやその他の感染症罹患後疾患の患者に真の変化をもたらす影響力を持っており、ME/CFSのような疾患による生活の質の問題が優先課題だと認め始めるWHOのリーダーが必要です
#筋痛性脳脊髄炎
WHOは、MEやその他の感染症罹患後疾患の患者に真の変化をもたらす影響力を持っており、ME/CFSのような疾患による生活の質の問題が優先課題だと認め始めるWHOのリーダーが必要です
#筋痛性脳脊髄炎
The World ME AllianceはWHOとその加盟国に、MEを「患者の活動を頻繁に制限する、深刻で複雑な多系統にわたる慢性疾患」と認識し、グローバルで協調的な公衆衛生上の対応を提供するための措置を講じること等を求めていきます
#筋痛性脳脊髄炎 #コロナ後遺症 #LongCovid #MECFS
#筋痛性脳脊髄炎 #コロナ後遺症 #LongCovid #MECFS
Washington Post: "For long covid fatigue, a strategy called ‘pacing’ helps, but at a cost"
'Taking a lesson from people with chronic fatigue, many patients with long covid are scaling back daily activity to cope'
washingtonpost.com/wellness/2023/…
'Taking a lesson from people with chronic fatigue, many patients with long covid are scaling back daily activity to cope'
washingtonpost.com/wellness/2023/…
"Experts say the extreme fatigue experienced by many long covid patients has a name: myalgic encephalomyelitis (ME/CFS), a condition previously known as chronic fatigue syndrome. Researchers estimate that about half of people with long covid have developed ME/CFS."
"There is no known cure for ME/CFS, but some experts say a complicated lifestyle change can help manage some of the symptoms."
"How to Get Help for Long COVID in NYC"
'There are care clinics for long COVID, local support groups, and ideas from those living with this illness. Here’s what you should know if you’re trying to navigate chronic symptoms in New York City'
thecity.nyc/2023/1/10/2354…
'There are care clinics for long COVID, local support groups, and ideas from those living with this illness. Here’s what you should know if you’re trying to navigate chronic symptoms in New York City'
thecity.nyc/2023/1/10/2354…
Jenna Bitar, 30, caught COVID in March 2020, just as schools were shutting down. What started as a bad cold “got scary very fast,” said Bitar.
Within a few weeks, they were experiencing a sore throat, debilitating fatigue and a racing heart rate when sitting or standing...
Within a few weeks, they were experiencing a sore throat, debilitating fatigue and a racing heart rate when sitting or standing...
“I would try to water my plants or fold my laundry and have to lay down with a fever,” said Bitar.
Bitar’s symptoms stretched on. “I’ve had to grieve the loss of my brain function, memory, cognition while also losing my relationships, any semblance of independence..
Bitar’s symptoms stretched on. “I’ve had to grieve the loss of my brain function, memory, cognition while also losing my relationships, any semblance of independence..
"What patients find at long COVID clinics: rejection, outdated therapies, and unanswered questions"
Roughly 16M Americans are living with long COVID but many are not getting the right medical care. One way to improve the system is by letting patients lead
popsci.com/health/long-co…
Roughly 16M Americans are living with long COVID but many are not getting the right medical care. One way to improve the system is by letting patients lead
popsci.com/health/long-co…
'My experience is not unique. This summer, the US Census Bureau reported that close to 16 million American adults are living with long COVID, a debilitating condition that lasts at least four weeks beyond an initial coronavirus infection and affects multiple organ systems.
It has been observed in all age groups, and has placed stress on the US healthcare model that relies on short doctor’s visits. Even though high-demand clinics, sometimes called post-COVID care centers, now offer services for the illness, many fail the very patients they have set
An #MEAction Scotland volunteer has shared her thoughts on #MillionsMissing Scotland 2022 and the unseen price that people with ME pay for their attendance:
Millions Missing
Well that was great.
People with ME, partners, friends, dogs.
Wheelchairs, scooters, chairs and a bed
Millions Missing
Well that was great.
People with ME, partners, friends, dogs.
Wheelchairs, scooters, chairs and a bed
The bed for all our friends who can’t be here.
Some sent words, their voices for one moment as loud and clear
As any healthy person.
And MSPs. Wonderful, wonderful,
To see so many and hear their support.
They came, they spoke, they signed the pledge,
They saw and heard us
Some sent words, their voices for one moment as loud and clear
As any healthy person.
And MSPs. Wonderful, wonderful,
To see so many and hear their support.
They came, they spoke, they signed the pledge,
They saw and heard us
Now for the fallout.
Because that was all our energy.
There’s none left for cycling home
Or having a shower or cooking a meal
Or phoning parents or meeting friends.
We’ve all spent many hours in that bed.
The price for today is another sentence
Because that was all our energy.
There’s none left for cycling home
Or having a shower or cooking a meal
Or phoning parents or meeting friends.
We’ve all spent many hours in that bed.
The price for today is another sentence
🧵 Essential scientific publication on ME/CFS
A list of publications you can give your doctor to read to explain what #MECFS is (i.e. papers readily available to non-experts). Including #LongCovid, #PEM, #MCAS, #POTS
Comments/DM are welcome. Scientific publications only.
A list of publications you can give your doctor to read to explain what #MECFS is (i.e. papers readily available to non-experts). Including #LongCovid, #PEM, #MCAS, #POTS
Comments/DM are welcome. Scientific publications only.
NICE guideline [NG206]
Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management
October 2021
nice.org.uk/guidance/ng206
Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management
October 2021
nice.org.uk/guidance/ng206
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Essentials of Diagnosis and Management
November 2021
mayoclinicproceedings.org/article/S0025-…
November 2021
mayoclinicproceedings.org/article/S0025-…
Starting at 1:40 pm ET at IACFS/ME, first panel discussion on COVID-19 related topics.
#CovidIsNotOver #mecfs #LongCovid #iacfsme #COVID19 @itsbodypolitic
#CovidIsNotOver #mecfs #LongCovid #iacfsme #COVID19 @itsbodypolitic
Learning objectives for these talks.
Dr. Boolani -- post-covid ME/CFS, and risk factors for that diagnosis.
URGENT - PLEASE SHARE
This is about Ella Copley, a young woman suffering terribly from Myalgic Encephalomyelitis (ME).
Ella Copley is 17 years old. She has severe ME and is also in intestinal failure. Ella has been a patient in Leeds General Infirmary (UK) for 18 weeks.
This is about Ella Copley, a young woman suffering terribly from Myalgic Encephalomyelitis (ME).
Ella Copley is 17 years old. She has severe ME and is also in intestinal failure. Ella has been a patient in Leeds General Infirmary (UK) for 18 weeks.
People with ME are often not believed and Ella is in severe pain. The pain is so bad that Ella says she wants to die. Even though Ella’s pain is unbearable, Leeds General Infirmary is withholding pain treatment.
We want them to KNOW they are being watched and to give Ella the correct pain relief. Joanne thinks Ella will die soon if she is not given the proper treatment.
“Missed risk: Long COVID threat extends far beyond pandemic” missoulian.com/news/local/mis…
“Teasdale’s post-COVID symptoms match a condition called myalgic encephalomyelitis/chronic fatigue syndrome, or ME/CFS.”
"In January, the journal Infection Control Today compiled other research forecasting more than 8 million Americans would develop long COVID. That’s at least three times the number of people currently diagnosed with ME/CFS (pre-COVID). The journal quoted #MEACTION editor...
I wonder how many realize we have not each touched on the worst-case scenario w/SARS-CoV-2. We're so busy trying to agree on what's happening right now.
You can't predict the future while you're still negotiating the present.
You can't predict the future while you're still negotiating the present.
Look, clear-cut answers aren't easy. But saying, "getting COVID is good b/c it gets rid of COVID anxiety!"; or that COVID is over; or that COVID is like a cold; or that the loss of over a million American lives is nothing... these are deliberately misleading statements.
There's also a kind of ethical undercutting. We are supposed to laugh off a million American lives. Doing so is presented as worldly and grown-up.
We should be grieving.
We should be grieving.
Anybody remember when, in 2016, #MEAction put together this community request to help respond to the @NIH 's RFI on ME?
I was pretty new to the world of advocacy. A long, thoughful 🧵(1/)
meaction.net/2016/06/18/tak…
I was pretty new to the world of advocacy. A long, thoughful 🧵(1/)
meaction.net/2016/06/18/tak…
That summer, I went to the Johns Hopkins Summer Epidemiology Seminar; had a great prof I still talk to now & again.
Put the survey together (with the help of Paige) and we got 1800+ responses to questions around patient research priorities in ME/CFS. (2/)
Put the survey together (with the help of Paige) and we got 1800+ responses to questions around patient research priorities in ME/CFS. (2/)
I was in a flurry... I remember I had clips from pertinent articles splayed out all over my living room carpet and there was a SYSTEM. Vicky Whittemore kindly gave me an extension when I asked. Then Ben HsuBorger saw the behemoth I'd produced and said, "JAIME. JAIME NO." (3/)
"Millions of people continue to suffer from exhaustion, cognitive problems & other long-lasting symptoms after a coronavirus infection."
Striking visual journalism by @joshkellerjosh for @nytimes in "How Long Covid Exhausts the Body."
Thanks for the link to our #StopRestPace!
Striking visual journalism by @joshkellerjosh for @nytimes in "How Long Covid Exhausts the Body."
Thanks for the link to our #StopRestPace!
"Some long Covid patients meet the criteria for ME/CFS (also known as chronic fatigue syndrome), which often starts after a viral infection. Researchers have found that ME/CFS patients also suffer from a lack of oxygen triggered by circulatory problems." #longCovid #MECFS
"Another research group found that long Covid may significantly reduce the amount of blood that reaches the brain, a finding that has was also seen in patients with a related chronic condition, ME/CFS, before the pandemic."
Great video interview with #MEAction's Director of Scientific & Medical Outreach Jaime Seltzer @exceedhergrasp1 with Frank Diamond of @ICT_magazine.
"We expect the number of people with ME/CFS to triple or quadruple due to the pandemic alone."
#pwME
infectioncontroltoday.com/view/getting-a…
"We expect the number of people with ME/CFS to triple or quadruple due to the pandemic alone."
#pwME
infectioncontroltoday.com/view/getting-a…
Transcript is available under the video.
"We have so much history—recent history as well as 100 years ago—to tell us that it would be incredibly unusual and atypical if SARS-CoV-2 were the only viral infection that did not lead to post-viral complications."
#longCovid #pandemic
"We have so much history—recent history as well as 100 years ago—to tell us that it would be incredibly unusual and atypical if SARS-CoV-2 were the only viral infection that did not lead to post-viral complications."
#longCovid #pandemic
"...when long COVID became a big deal & a headline on the international stage, researchers at very impressive institutions with very impressive roles first became interested in post-viral disease...that’s wonderful...we all welcome them to the field, & we hope that they’ll stay."
Adriane Tillman at #MEAction writes, "Long COVID is not a new phenomenon—there are millions of Americans who got sick with a virus & never recovered before the pandemic & developed ME/CFS. The only difference is that we are seeing this happen now in real time on a massive scale.”
"Advocacy groups for those with long COVID and ME/CFS want the NIH to include research in ME/CFS as part of the agency’s $1.15 billion RECOVER initiative, and Tillman writes that “ample research [already] exists on post-viral illness.” #pwME #LongCovid #MECFS
“And yet, we continue to see amnesia and inaction from the NIH when it comes to building off the post-viral knowledge that already exists. Researchers with little experience in long COVID and no experience before COVID-19 are directing NIH-funded initiatives; this means people...
#MEAction launched our #StopRestPace campaign in 2020 knowing there was an urgent need to reach the people who had #LongCovid & who are showing symptoms of myalgic encephalomyelitis (ME). That need has grown increasingly urgent as the pandemic has become a mass-disabling event.
In 2020, researchers were predicting 10-12% of those who caught COVID19 would develop ME/CFS. Almost 2 years into the pandemic, we now have preliminary studies showing that nearly half of Long COVID patients are meeting the diagnostic criteria for ME/CFS.* meaction.net/long-covid-me-…
The chronic illness community saw it coming and did our best to prepare folks. #MEAction had a coordinated response. But the chronic illness community is not a public health agency, and cannot coordinate a response on the level necessary to educate the public as a whole. (1/7)
We're told patients should ensure researchers study #MECFS rather than CDC/NIH ringfencing funding. At the public health level, we were left to do our best to educate about the potential for post-viral chronic complex diseases like #LongCOVID. I'm not sure how many heard. (2/7)
I mean, I'm still hearing that #LongCOVID is a 'mystery' & "who could've predicted--?" & I'm VERY worried about who has been identified as an expert in the #LongCOVID space who is not a patient. They largely have no experience with post-viral disease before COVID. (3/7)
