Discover and read the best of Twitter Threads about #postexertionalmalaise

Most recents (13)

I don't talk a lot about having #PostExertionalMalaise because people just don't take it seriously. People have told me that I'm just making excuses or not trying hard enough. And it's like if I could work harder, I would. But my health just does not work that way.
I have lost people that I thought were friends & followers cause of my PEM. People could not empathize or understand why it takes me so long to respond or why I don't have the energy to respond fast enough to things. They also looked down on me for depending on disability benefit
It's very isolating to suffer from PEM because people just don't understand it. They need you're just being lazy or not trying hard enough. They think you're a leech in society because you either can't contribute at all or not enough in their eyes. And it's so unfair and cruel.
Read 5 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
Guten Morgen, liebe #Follower & solche, die es werden wollen! 😉

Immer wieder passiert es, dass #LongCovidKids #MECFSKids bzw. Eltern in Schulen o. Ämtern Probleme bekommen.
Die Kinder werden trotz deutlicher Symptomatik in den Unterricht gedrängt.

Ein 🧵 von #BildungAberSicher
Für die #MECFSKids #LongCovidKids ist dies höchst problematisch, da sie dann der einzigen bisher bekannten wirksamen #Therapie bzw. #Verhaltensweise, die in diesem Fall sicher angeraten werden kann, nicht nachkommen können:

dem #Pacing!

Unser neuer #Flyer soll hier erste Hilfe geben.
Er kann, darf und soll an #Lehrkräfte, #Erzieher_innen, #Schulpsycholog_innen, #Schulleitungen & Ämter weitergegeben werden.
Er bietet eine erste Information und weiterführende Links.

Read 13 tweets
#MEcfs – Chronic Fatigue Syndrom. Was ist das? Wie wird es behandelt? — Ein leicht verständlicher 🧵 von Neurona, der kleinen Neurone, über die schlimmste Form von #LongCOVID.

(Bildbeschreibung als Text, Credits am Ende) Image
„Hallo! Ich bin Neurona! Ich möchte dir erzählen, was wir heute über ME/CFS wissen. Du & deine Angehörigen können dann besser verstehen, welche Ursachen für ME/CFS wir heute vermuten & wie wir es behandeln. Image
ME steht für Myalgische
Enzephalomyelitis. Enzephalomyelitis bedeutet
Entzündung des Gehirns & des Rückenmarks. Mark, altgriechisch muelos. Gehirn, altgriechisch enképhalos. Myalgie bedeutet
Muskelschmerz. CFS steht für
Chronic Fatigue Syndrome oder chron. Erschöpfungssyndrom. Image
Read 21 tweets
It's been a while since I've been on's why.
It's been over 31 months since I first contracted C19 & my life changed. 31 months since I was able to work in either of the jobs that I loved, been the mum, wife, sister, daughter & friend I once was. 1/
Because of #LongCovid I'm crippled daily by fatigue, pain, brain fog, breathlessness, muscle weakness, tinnitus, nausea, post exertional malaise...list goes on. I'm 60-80% bedbound, unable to drive, when able to go out I use a wheelchair. My husband & daughters are my carers. 2/
I've lost friends because I'm unable to be the crazy, full of life friend I once was & they just don't get how I'm 'still sick' & I'm fed up trying to prove how sick I am to them. I have tried most things to try to help myself including vitamins, herbal medicine, yoga(!) 3/
Read 18 tweets
I began #longcovid rehab today. Buckle up. 🧵

When making the appointment with me, they asked me to be there for 9am.

Not a chance. Even 10am was a push.

I arrived in a large room with 4 tables, each populated with a clinician & a patient, with the 1/
patients rotating around the room to see each MDT clinician. I was asked to sit in a chair at one end of the large room.

A few minutes later I was asked to sit in a chair in the middle of the room to enable the physio to take my BP, HR & SATS. 2/
Then asked to stand and walk to the side for my height&weight to be measured. Then back to the seat in the middle.

Physio then said that once I’d been assessed medically, we’d do a 6min walking test.

“Indeed we won’t” I replied. 3/
Read 9 tweets
1/ According to latest ONS figures, 2M people in the UK now have Long Covid. Between 50-70% meet diagnostic criteria for #MyalgicEncephalomyelitis, a serious condition notoriously neglected & misunderstood by medical professionals.

Medics, read on for important information 🧵
2/ Thank you @AnilvanderZee for making this video. I want medics watching to understand that although Anil looks in good health, I can assure he is not. The exertion used to make this video will have triggered a ‘crash’
3/ I have experienced this for myself. Prior to covid I was a fit and healthy 35yr old, no comorbidities, regularly working 12hr+ shifts all day on my feet.
Read 26 tweets
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"
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…
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
#Baseline #FineLine
Read 8 tweets
(1/15) PEM explained
When I woke up the day after jogging, I felt terrible, although terrible is probably an understatement. It is a feeling that healthy people can hardly imagine. It feels like having a flu, a hangover and a jetlag at the same time.
(2/15) At that time I wasn’t able to make the connection between yesterday's jogging and the terrible feeling the next morning.
Today I know that I experienced my first PEM back then.
(3/15) What is PEM?
PEM stands for Post External Malaise and refers to the worsening of symptoms after minor physical and/or mental exertion.

PEM occurs immediately after a performed activity or with a latency of approx. 12 to 48 hours thereafter and may persist for several
Read 15 tweets
🧵1/9 Psychologist
"We think your symptoms are psychological." I couldn't get this sentence out of my head. How could my symptoms be psychological? Bulls**.

But what if he was right? I couldn't get rid of the thought & followed the doctors advice & went to see a psychologist.
2/9 It was an old man, around 75. After I have told him about everything, he asked me what bothered me. "My symptoms" I said. “But there has to be something that burdens you mentally” he answered. The following conversation went something like this:
3/9 "Did you have a bad experience in your childhood?"
- "No"
Did you lose a close family member?"
- "No"
Are your parents divorced?
- “No”
He was desperately trying to find something in my past and I was getting more and more confused.
Read 9 tweets
What is ME/CFS?
In short, in its severe stage, it is the worst non-fatal physical disease you can have.

ME/CFS is a severe, physical and complex disease, usually caused by a viral infection. Because so little research has been done on it, scientists are not sure about the
underlying cause yet.
An incorrect response of the immune system to an infection is likely which then, as in a chain reaction, leads to a dysregulation of the immune system, the nervous system, the endocrine system, the energy metabolic system and the cardiovascular system.
The disturbed immune regulation also leads to a sustained T-cell activation and a reduced function of natural killer cells.

Who is prone to develop ME/CFS is also still unclear. There are probably two factors:
-An infection at the time of high physical activity or stress load
Read 9 tweets
On the top picture, you see me.  
Back then I enjoyed life and did not worry about the future. I had just finished school and couldn't wait to see what life had in store for me. I was a very sociable person and loved having people around me. I lived a very active life and there Image
was hardly any party I missed. Photography and travelling were my great passions. 
On the picture below, you see M.E.  
A severe and utterly frightening disease that hardly any research has been done on. This disease is to blame for the fact that I have lost everything about my
old life. Here I am getting another infusion because I am in such a bad general condition again. 
So, what happened between the two pictures? 
I developed Myalgic Encephalomyelitis / ”Chronic Fatigue Syndrome” after a mild virus infection. (hard to pronounce, even harder to
Read 8 tweets
Young & healthy folks: I know the media has told you that you need to be safe to protect the high-risk around you from #COVID19 . But please, you must protect *yourself* also. Here's why – a thread:
6 years ago, I was a young, healthy, active person when I got a virus. 1/8
The virus itself wasn’t a severe case. I was never hospitalized from it. 2/8
#postCOVID19 #MyalgicEncephalomyelitis
Read 9 tweets

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