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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
De kans om Long Covid te krijgen is best groot. Wellicht ken je niemand die het heeft en weet je er dus weinig van? Ik zal proberen uit te leggen wat het is en wat er dan met je leven kan gebeuren
Stel je gaat naar een feestje. Na afloop zijn 8 mensen positief met corona
Stel je gaat naar een feestje. Na afloop zijn 8 mensen positief met corona
Gelukkig zijn de klachten mild, want iedereen is gevaccineerd. Je blijft thuis en snottert wat. Een voor een knapt iedereen op. Bij jou duurt het wat langer dan bij de rest. Na 10 dagen ben je het binnen zitten zat. Je gaat een stukje wandelen. Het voelt heerlijk de zon op je
Gezicht te voelen na 10 dagen!
De dag erna word je wakker en voel je je beroerd. Alles doet pijn, je kan nauwelijks denken en je bent moe. Toch nog niet beter denk je.
Toch moet je weer naar je werk. Je raapt je bij elkaar en stapt op de fiets. Halverwege moet je stoppen
De dag erna word je wakker en voel je je beroerd. Alles doet pijn, je kan nauwelijks denken en je bent moe. Toch nog niet beter denk je.
Toch moet je weer naar je werk. Je raapt je bij elkaar en stapt op de fiets. Halverwege moet je stoppen
I haven’t posted about #Longcovid in a while. The truth is I’ve been getting better in the last 6 months, but I’ve been scared to post about it in case it’s only temporary and I relapse. But now, 2 years and 8 months since I first got covid, I’m doing so much better. 1/
I’ve been working full time for 4 months and I am RUNNING. I’m on week 5 of Couch to 5k 😄 I can go out and see friends, and I don’t have to worry about getting too tired. I have got my life back ❤️ 2/
I still have low-level muscle and joint aches quite often, and I don’t have the energy I used to. I’ve changed careers to accommodate my lower energy levels (I’m now working in data and loving it!🤓). But my fatigue has lifted and my other symptoms have gone. 3/
It’s cute that the HANDI guide by @RACGP prides themselves on claiming they’re “evidence-based” 😂😂 When they still only have one entry for #MECFS and it’s “Graded Exercise Therapy” . 👀 Let’s dive in shall we?
1/ 🧵
#MECFS #StopTheHarm #LongCovidAus
racgp.org.au/clinical-resou…
1/ 🧵
#MECFS #StopTheHarm #LongCovidAus
racgp.org.au/clinical-resou…
First up, this is not targeted at any individual. The (mis)treatment of ME patients in Australia is systemic and institutional - spanning education to guidelines, welfare & insurance.
That said, individuals can make a positive difference. Will you be one of them? #StopTheHarm 2/
That said, individuals can make a positive difference. Will you be one of them? #StopTheHarm 2/
Today let’s look at the HANDI guide - a set of non-pharmacological interventions pby the Royal Australian College of General Practitioners.
It’s a great resource & doctors refer to it for “evidence-based” guidance…
> The only entry for ME/CFS is on Graded Exercise Therapy… 3/
It’s a great resource & doctors refer to it for “evidence-based” guidance…
> The only entry for ME/CFS is on Graded Exercise Therapy… 3/
I reluctantly watched this show and if I had a bingo card for how NOT to treat #longcovid I’d have had a full house. A thread 🧵1/
2/ Steve is unable to complete the first interview as he becomes dizzy and lightheaded. Opportunity to investigate Steve for the condition POTS that commonly overlaps with Long Covid?? No - a quick check on a static BP and HR and this is never mentioned again
3/ The voiceover on the trailer and throughout, along with the comments from @DrPhilCork repeatedly state that he is “de-conditioned” and has a “sedentary lifestyle“. These are presented as causes - yet this has been roundly debunked in the international literature
I have #MyalgicEncephalomyelitis. It’s been 9 days since @MEActNet’s #StillSickStillFighting action + I wanted y’all to have a glimpse of what #PEM is. Post-exertional malaise is the hallmark symptom for #pwME #MECFS, which half of #pwLC #LongCovid have
#NEISvoid (1/18)
#NEISvoid (1/18)
When we push ourselves beyond our energy envelope + don’t #StopRestPace, we end up with #PEM, where we “crash” and get much sicker. (I’m in the front here! We’re used to lying down, but getting up + down, lying on the hot pavement while chanting is really rough for us!) (2/18)
So for this action, we prepared. I got good rest Frid-Sun. I was good about using mobility devices + prioritizing comfort for transit + lodging. I took all my meds (even supplements!) when I was supposed to, put on sunscreen, drank water. Look how rested and ready! (3/18)
#LongCovid update at 5 months: no progress to report - so instead a 🧵on things best not to say to someone with Long Covid:
1: Wow you’ve been housebound for X whole months, how absolutely terrible that you’re missing out on so much.
🙁 No reminder necessary
1: Wow you’ve been housebound for X whole months, how absolutely terrible that you’re missing out on so much.
🙁 No reminder necessary
2. It’s so unlucky that you got this new illness, it’s so very rare.
#LongCovid isn’t rare. ~3% of the UK population are currently dealing with this chronic illness. Many argue it’s not even new with people suffering with #MECFS (very similar to LC), ignored for decades.
#LongCovid isn’t rare. ~3% of the UK population are currently dealing with this chronic illness. Many argue it’s not even new with people suffering with #MECFS (very similar to LC), ignored for decades.
3. I know you’ll be better any day now.
Sadly the statistics say otherwise - published in Nature, a study of 1000 #LongCovid patients found 85% still had symptoms 1 year after the initial infection.
nature.com/articles/s4146…
Sadly the statistics say otherwise - published in Nature, a study of 1000 #LongCovid patients found 85% still had symptoms 1 year after the initial infection.
nature.com/articles/s4146…
🧵 It’s #DisabilityPrideMonth and we’re seeing another wave of COVID globally, so here’s a list of reasons why you should watch the Netflix documentary ‘Unrest’ and educate yourself on #MECFS and #LongCovid
ME/CFS, also known as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome is a multisystem, physical disease that can be identified by its cardinal symptom, PEM (Post Exertional Malaise), in which after activity, the individual experiences a delayed worsening of symptoms. 1/
These symptoms are debilitating and leaves sufferers after activity, even on the mild end of the spectrum, with migraines, light/noise sensitivity, vertigo, nausea, vision changes, widespread muscle/joint pain, weakness, orthostatic intolerance and at its worst, paralysis. 2/
1/7“The cardinal symptom of ME/CFS – PEM or post exertional exacerbation of symptoms.
……the fact that by definition, patients with ME/CFS are made more ill by aerobic exercise.
This has been unequivocally and repeatedly demonstrated by several research groups and confirmed by"
……the fact that by definition, patients with ME/CFS are made more ill by aerobic exercise.
This has been unequivocally and repeatedly demonstrated by several research groups and confirmed by"
2/7"major govt. bodies in the US: the National Institutes of Health, the Center for Disease Control and the National Academy of Medicine.” #MECFS #LCME #ExertionIntolerant #EnergyLimitingConditions #PostExertionalMalaise #StopRestPace
dialogues-mecfs.co.uk/films/graded-e…
dialogues-mecfs.co.uk/films/graded-e…
3/7 #pwME "need a level of discipline at least as high as the average Olympic athlete to control and restrict all their activities so completely for years." #MECFSWarriors
#StopRestPace
#Baseline #FineLine
#ProlongedOverExertionKills
#SelfCompassionIsKey
hfme.org/adrenalinesurg…
#StopRestPace
#Baseline #FineLine
#ProlongedOverExertionKills
#SelfCompassionIsKey
hfme.org/adrenalinesurg…
A story about ME.
In the late winter of 2004, I caught a nasty virus—perhaps SARS-CoV, perhaps not—and since then my life has been a series of shrinking options and forced limits. Take too many steps? Bed. Cook a meal? Bed. Mental stress? Bed. Hangout? Bed. Enjoy the beach? Bed.
In the late winter of 2004, I caught a nasty virus—perhaps SARS-CoV, perhaps not—and since then my life has been a series of shrinking options and forced limits. Take too many steps? Bed. Cook a meal? Bed. Mental stress? Bed. Hangout? Bed. Enjoy the beach? Bed.
In 2011, I was diagnosed with Myalgic Encencephalomyelitis—ME—but not before the push-crash cycle left me unable to work, unable to lead a normal life. PEM, a racing pulse, breathlessness, sleep disorders, OI, heat/cold/sound/light sensitivities—sounds fun, right?!
#pwME
#pwME
But interestingly, elevated liver enzyme levels were some of the first diagnostic results to raise a red flag after infection. The levels have bounced around, but have remained too high since my fateful trip to Europe in 2004. In early 2017, I was also diagnosed with NAFLD.
"Millions of people have already developed long COVID; many of them... have not recovered. This is the challenge of chronic illness: When people join its ranks, they do not always exit. With each new case of long COVID, the virus’s burden balloons." theatlantic.com/health/archive…
"To date, experts have yet to find any demographic that has been spared from the condition, despite persistent myths that certain groups, particularly kids, are somehow immune...Every iteration we’ve encountered so far, Omicron included, seems capable of causing long COVID."
"To this day, most countries do not keep a running tally of long-COVID cases. But ballparks of the burden are staggering. Some 2% of all U.K. residents—not just those with documented infections—might currently have long COVID, according to the Office for National Statistics."
Two years ago today that I contracted a mild case of #CV19, before vaccines, before masks, before lockdowns. My life has been turned upside since by #longcovid with waves of frightening, debilitating symptoms, desperation and deterioration in mental and physical health 1/12
From March 9th 2020 my health went downhill - constant crushing chest compression and pain, a constant feeling of suffocation (covid strangle), joint and muscle pain, fever, dizziness, cognitive impairment, ruinous insomnia, terrible gastro-intestinal issues (nausea, reflux) 2/12
The worst being the claustrophobic chest compression (like an anvil on my chest) and inability to breathe properly, or get a proper lungful of air for every second of every day, 24/7, for close to a year. Fuck me I will never forget how that felt. It’s traumatising. 3/12
"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."
Historical quotes on the importance of rest for people with ME:
“Premature activity should be avoided because of the danger that relapse might be provoked.”
/Compston, Epidemic at Royal Free Hospital, 1956.
#StopRestPace #pwME #MEcfs
“Premature activity should be avoided because of the danger that relapse might be provoked.”
/Compston, Epidemic at Royal Free Hospital, 1956.
#StopRestPace #pwME #MEcfs
“Rest proved the sheet-anchor in the management of the acute stage. (...) The evil effects of premature exertion, even a prolonged neurological examination, became apparent to all.”
/The medical staff of the Royal Free Hospital, “An outbreak of encephalomyelitis”, 1957.
#pwME
/The medical staff of the Royal Free Hospital, “An outbreak of encephalomyelitis”, 1957.
#pwME
“The importance of rest, as early in the disease as possible, and as absolute as practicable, is stressed by many authors.”
/Acheson, The clinical syndrome variously called benign myalgic encephalomyelitis, Iceland disease and epidemic neuromyasthenia, 1959.
#StopRestPace #pwME
/Acheson, The clinical syndrome variously called benign myalgic encephalomyelitis, Iceland disease and epidemic neuromyasthenia, 1959.
#StopRestPace #pwME
#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-…
Exercise duration by itself is not an appropriate functional outcome measure for #pwme and patients with #LongCovid. If we wouldn’t stress test a diabetic with a candy bar, we shouldn’t stress #pwme and patients with #LongCovid using bike and treadmill “exercise-for-time” tasks.
Formalized exercise testing to determine metabolic, cardiac, and pulmonary functioning has its place for diagnosis and to characterize disability for #pwme and #LongCovid, including the appropriate caveats and safeguards. Six minute walk test and cycle/walk for time aren’t it.
People with post exertional symptom exacerbation enter anaerobic metabolism earlier during maximal exercise than deconditioned people. Exercise tasks and tests that are submaximal for people with a normal functioning aerobic energy system may be supramaximal for people who don’t.
1/ Our association has written an open letter to the French health authorities to warn about the risk of myalgic encephalomyelitis from Covid, asking for:
- recognition, care & biomedical research
- notice of caution on exercise therapy
👉 cloud.millionsmissing.fr/s/6Ak6t4wQnHj9…
#pwME #MECFS
- recognition, care & biomedical research
- notice of caution on exercise therapy
👉 cloud.millionsmissing.fr/s/6Ak6t4wQnHj9…
#pwME #MECFS
2/ Among the 92 recipients of this letter : @MinSoliSante (cabinet of the Minister of Health @olivierveran), @AlerteSanitaire, @SantePubliqueFr, @HAS_sante (High Authority of Health), @hcsp_fr
We reached out to MPs working on #LongCovid bills incl. @MIRALLESMP @TrastourIsnart
We reached out to MPs working on #LongCovid bills incl. @MIRALLESMP @TrastourIsnart
3/ The current situation of the 300K+ ME patients in France is unacceptable:
- no recognition despite its classification as a neurological disease by @WHO
- a routinely prescribed iatrogenic treatment
- severe disability w/o help
- barely a handful of specialists treating it
- no recognition despite its classification as a neurological disease by @WHO
- a routinely prescribed iatrogenic treatment
- severe disability w/o help
- barely a handful of specialists treating it
