Safe Long COVID Rehabilitation a video from Long COVID Physio
Physiotherapists living with Long COVID have produced a short video [5 mins 15] for fellow physios explaining the importance of providing safe rehabilitation for people with LC and ME/CFS.
Excerpts:
Rehabilitation aims to reduce the impact of a health condition on a person’s life by trying to manage, maintain or improve functioning and prevent or reduce experiences of disability.
Rehabilitation must be person centred, goal centred and individualised to people’s symptoms, health challenges and disability.
Some rehabilitation approaches cause harm. Graded Exercise Therapy, a clinician supervised gradual increase in physical activity or exercise over time worsens symptoms and decreases functioning in people with post-exertional symptom exacerbation such as Myalgic encephalomyelitis, Chronic Fatigue Syndrome or long COVID.
To ensure we do no harm in Long Covid rehabilitation we must continuously screen and monitor for post exertion or symptom exacerbation or post-exertional malaise and promote the message of the ME/CFS community to Stop, Rest and Pace.
Some examples of safe rehabilitation include:
providing education about the importance of therapeutic rest and sleep
skills training on pacing to manage activities and energy levels
help to use heart rate monitoring
support developing an activity management plan within energy limits to minimise symptoms
finding ways to respond quickly to flare-ups or relapses
providing equipment and training in the use of equipment to reduce the number and severity of relapses
PEM: Running out of battery & feeling intensely unwell: a carer’s perspective
I guess you’ve probably heard of Myalgic Encephalomyelitis – by its abbreviation ‘ME’.
Maybe you’ve got an idea that it’s about being tired all the time. That would be understandable because some people call it Chronic Fatigue Syndrome (‘CFS’ for short), a name that is despised by most of us who find it so understates and misrepresents our lived experience of the illness.
Actually, I consider it an insult, but NICE, the UK’s National Institute for Health and Care Excellence, has hit on a compromise by calling it ME/CFS, so that’s what I’ll do here.
Fatigue
Sure, ‘fatigue’ is essential to the diagnosis, but not the kind with which most of us are familiar. It is physical and mental, all consuming, overwhelming, and you can’t sleep it off.
Patients say things like:
“I feel like I’ve been hit by a bus!…. like everything’s been sucked out of me….
…as if I’ve just come round after being knocked out in a boxing match…”
But there’s a problem with this emphasis on ‘fatigue’ alone, because there’s much more to ME/CFS than that. ME/CFS is a multi-system illness with multi symptoms to match. Four are needed for a diagnosis in the UK: fatigue; PEM; sleep disturbance; cognitive difficulties. Many more can be experienced.
Post Exertional Malaise – the hallmark feature
The ‘hallmark’ or ‘cardinal’ clinical feature of ME/CFS is Post-Exertional Malaise (PEM). NICE describes PEM as:
the worsening of symptoms after an activity which is “disproportionate to the activity” (i.e. much worse than you’d expect) …
“often delayed in onset by hours or days”, and “has a prolonged recovery time that may last hours, days, weeks or longer” (NG206).
Some prefer the term Post-Exertional Symptom Exacerbation (PESE) , since, as well as an all-pervading and intense feeling of unwellness (‘malaise’), all the person’s symptoms can intensify.
When we mention ‘activity’ and ‘exertion’ here, we’re not talking about running a 10K or climbing Yr Wyddfa, and it doesn’t have to be physical; it could be cognitive or emotional, or a combination.
Activity can be anything
All the examples I give about the triggers and experiences of PEM are based on our family’s lived experience of ME/CFS. For someone with severe ME/CFS, an ‘activity’ could be brushing their teeth – and having to decide whether to do this ‘activity’ today or wash their face, because they can’t manage both.
It might mean, once a week being helped from their bed into the wheelchair and being pushed to the back door to spend 5 minutes feeling the fresh air, wearing ear defenders and an eye mask – but then having to rest quietly without talking for the rest of the day in their darkened, sound suppressed room in the bed where they’ve spent the past 3 years.
Pushing beyond these tiny limits can induce a worsening of all their symptoms – that is Post-Exertional Malaise.
ME, the disease where pushing harder can make you sicker
What PEM feels like
When people with ME/CFS try to describe PEM they often say
“I feel like I’ve been poisoned”.
They talk about an awful heaviness:
“I feel like I’ve got heavy weights attached to my body…
like I’ve got liquid lead running through my veins instead of blood…
as if I’m an alien who’s landed from another planet which has less gravity…”
“I feel that I can’t support my body, even when I’m lying down.”
Body pain increases and other disturbing sensations:
“I get a lot of different sorts of pains, all over my body – sometimes in my limbs, my hands and feet… and burning sensations – sometimes my whole body is hurting… I get pain in my face and a real weakness, a heavy feeling, in my jaw and cheeks.”
“It makes me open my mouth because I haven’t got enough energy to keep it shut – and my tongue… I mean, you’re not usually aware of it… but I become aware of it… how weak it is…”
“During the night I wake up with vertigo and coloured flashing lights going off behind my eyes. When that happens I have to keep the light on and my eyes open until I can fall asleep again”.
Physical coordination and speech can be affected:
“One day, someone actually asked me if I was drunk, because as I get worse, my speech becomes impaired and I lose my balance and bump into things…
“When I was in the hairdressers recently, the hairdresser had to keep straightening me, pushing me upright – because it’s hard to sit up for a long time and I was tilting to one side!”
“I can only keep up with a conversation for a short time, then I start to lose track and get more and more confused…”
People with severe ME/CFS can become reliant on a wheelchair, or be confined to bed, lose the ability to speak, eat and drink:
“We had a list of things like ‘Do you want a wee?… a drink?… the window open? And he would squeeze my finger when we got to the right one. Sometimes he could whisper a few words and we would try to piece together their meaning… He was fed by naso-gastric tube in a hospital bed for 18 months”.
Cognitive and sensory symptoms increase:
“I can’t look at a screen especially if there’s much movement, and I have to stop trying to read… I can’t focus my eyes, and have to keep looking away… it’s like I’ve become dyslexic… and I can’t get any meaning from the text…
If I push myself to keep going, it starts to affect me all over… I get pains in my arms and legs which is crazy because what have they got to with reading?! I become more and more sensitive to light and sounds…”
Dysautonomia is common:
“Pain in my heart is often an indicator that I’ve done too much…I get palpitations… missing beats… dizziness and a feeling of near collapse – I’ve had this a lot when standing up to do something, like doing the washing up – and a feeling of not being able to get enough oxygen (this is nothing to do with anxiety, by the way)…”
PEM stops you functioning:
“My whole body just feels like its slowing down, like it’s running out of battery… and the more I try to push against that, the worse my symptoms become…
The only thing I can do is to stop… my body isn’t working, my brain isn’t working… I try to resist going to bed because I want to do stuff, but I just have to stop and rest”
“For most people ‘resting’ could men sitting down and watching telly, or reading a book, but that’s ‘activity’ for me and would make things worse when I’m getting PEM… I have to stop completely and lie in the dark…
I’ve had to learn how to do ‘deep rest’… this means making my mind completely blank… I can’t think, imagine or bring things to mind, because even this will make me worse…”
Post-Exertional Malaise is the most debilitating feature of ME/CFS, because it stops people from doing the things they want to do: being able to study, hold down a job, enjoy leisure and social activities that most of us take for granted, look after their families or, in the most severe cases, undertake their own personal care.
ME/CFS takes away people’s lives
A desperate need for research
Because of a historic lack of biomedical research, there are, as yet, no effective treatments. In 2009, US Prof Dr Nancy Klimas drew this stark contrast:
“My HIV patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested.
Many of my ME/CFS patients, on the other hand, are terribly ill and unable to work or participate in the care of their families.
I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses, I would rather have HIV.”
Take part in ground-breaking research
DecodeME will use small differences in the DNA of people with ME/CFS to look for biological causes of the disease.
If you, or a family member, or a friend, have been diagnosed with ME/CFS (there were an estimated 13,000 in Wales before long COVID), please join the world’s largest research study into the genetics of this illness, Decode ME. Edinburgh University has been awarded £3.2m to analyse the genetic samples of 25,000 patients. Healthy people also needed. It’s easy to take part from home.
Video: Post Exertional Malaise – triggers, symptoms, management
Post Exertional Malaise is the hallmark symptom of ME/CFS and is also common in Long Covid. This short video from Broken Battery explains the abnormal response to exertion – triggers, symptoms and management.
This year for World ME Day people living with ME want to make post-exertional malaise (PEM) visible.
What is post-exertional malaise, and why are we focusing on it?
Post-exertional malaise (PEM) is something that everyone with ME experiences.
It is when symptoms become worse after:
physical, mental or emotional exertion
sensory overload (light and sound)
This is the hallmark symptom of ME.
Symptoms can become more severe for days, weeks, or permanently. The symptoms typically begin to worsen 12 to 48 hours after the activity or exposure.
When it comes to ME, it’s crucial to understand that pushing harder can make you sicker. You cannot exercise your way out of ME but also for many people even simple activities like taking a shower or having a conversation can cause a flare-up of symptoms. The more severely affected may have to choose between brushing their teeth or washing their face as both activities could be too much.
This is the aspect of the disease that people living with ME want you to understand. Although there is no cure, there are management strategies which can help to minimise the effects.
ME: the disease where pushing harder can make you sicker
Long COVID means millions more are experiencing post-exertional malaise
Before the COVID-19 pandemic hit, there were between 17 and 30 million people living with ME worldwide. But now there are 65 million people living with long COVID, and half of those individuals are experiencing post-exertional malaise. (The population of the UK is estimated to be 68,890,500 in 2023!)
This means the number of people living with ME has likely doubled over the past 3 years.
Find out more from WAMES and the World ME alliance
New factsheet about ME in many languages including English here and Welsh here and English easy format here.
Call-to-action: Video yourself for World ME Day 2023!
Follow Holly’s example and tell the world what happens when pushing harder makes you sicker, for World ME Day on May 12th.
ME, or Myalgic Encephalomyelitis, is a debilitating disease that affects millions of people worldwide. One of the most debilitating symptoms of ME is post-exertional malaise (PEM) – where pushing harder can make you sicker.
WAMES is joining with other members of the World ME Alliance in inviting people with ME to share your experiences of post-exertional malaise (also called post exertional symptom exacerbation, PESE) by recording short videos of yourselves in your native language. Sharing true stories from lived experience is incredibly powerful.
Take action in 5 steps!
Take a video of yourself
Start by saying “I live with a disease where pushing harder can make me sicker…”
Tell the camera what happens when you push through
Share your video to social media, using the hashtags #WorldMEDay and #LearnFromME
Tag @WorldMEAlliance and @wamesmecfs so we can repost your video
By sharing your story, you can help raise awareness of this disease and the impact it has on your life, and that of millions of others around the world.
Sharing your experience can also help to educate others about the reality of ME. All too often, people with ME are dismissed or not believed when they talk about their symptoms. By sharing your story, you can help to break down the misconceptions surrounding ME and help others understand this disease.
Not sure what to say?
If you’re not sure what to say about your experience, here are a few prompts to help you get started:
What triggers your post-exertional malaise?
How does post-exertional malaise affect your daily life?
What does it feel like when you experience post-exertional malaise?
How long does post-exertional malaise last for you
What do you want the world to know about ME this World ME Day?
Get help to make a video
We’ve also put together this short guide to taking a high quality film using your smartphone. And #MEAction have storytelling training happening this year too.
Once you’ve made your video, remember to post it to social media on May 12th using the hashtags #WorldMEDay and #LearnFromME.
Tag @WorldMEAlliance and @wamesmecfs so we can repost your video!
We understand that sharing your story can be difficult, but know that your voice matters. By sharing your experience, you can help to make a difference and raise awareness of this often-misunderstood disease.
We encourage everyone to listen to the stories shared on World ME Day and to take the time to learn more about this debilitating disease. Together, we can work towards a better understanding of ME and a brighter future for those living with this disease.
The Open Medicine Foundation (OMF) in the US invites you to help speed up the research process!
StudyME is a participant registry which will connect those who want to participate in research studies (wherever you live) to the researchers who conduct them.
Signing up is easy and takes less than five minutes.
All you need to do is:
provide your contact details and
specify your areas of interest.
Once you’ve done this, you’ll be sent email notifications whenever there are research opportunities that align with your interests to potentially participate in surveys, laboratory studies, or treatment trials.
STAND UP AND BE COUNTED
Let’s show the world how many people want a cure
StudyME wants to enrol 100,000 participants, comprising of individuals afflicted with #MECFS, #LongCOVID, #Fibromyalgia and related post-infection illnesses, as well as healthy volunteers.
StudyME makes recruiting faster, promotes global collaboration and will help make it easier for researchers to get grants with a large and diverse pool of participants.
Anna Redshaw invites you to join her on Sunday 14 May to meet up online while enjoying tea and cake (or whatever your delicate digestive systems can manage) and donate what you can to ME charities and causes.
Anna began her Blue Sunday Tea Party in 2013. The idea caught on and on Sunday 14 May 2023, people from all over the world will meet up online to chat and leave comments on each other’s posts. You can join in:
Dig out your best cups and saucers
Wear something blue (pyjamas count!)
If you’re able to, invite your family and friends to enjoy tea and cake with you, in-person or via video call
Donate the price you’d pay in a cafe – Select your own charity to donate to, or choose a research charity she has listed – Donate to WAMES through PayPal, Bank transfer, Dontsendmeacard or send a cheque/postal order to the Treasurer.
Post a photo to social media – You can share your photos in the Blue Sunday 2023 Facebook Event or on Twitter and/or Instagram using the hashtags #TeaPartyForME2023 #BlueSunday2023
Join others online as they do the same
We are so often excluded from events because our symptoms can make it so difficult for us to leave the house, let alone spend an hour or two at an event. That’s why the Tea Party For ME has always had an online/virtual element running alongside any Real Life tea parties.
The Medical Research Council (MRC) invites applications from researchers that address 1 or more of the research areas identified by the ME/CFS Priority Setting Partnership for ME/CFS research:
post-exertional malaise
use of existing drugs for other conditions
diagnosis
autoimmunity
ME/CFS sub-types
post-infective cause
neurological symptomology
genetics
severe ME/CFS
mitochondrial dysfunction
oxygenation dysfunction
The MRC will usually fund up to 80% of a project’s full economic cost.
Demonstrate the reality of living with ME for World ME Day 2023 on May 12th 2023.
Let’s make post-exertional malaise visible
Share the reality of how pushing harder can make you sicker. WAMES and fellow World ME Alliance members are calling on all people with ME and carers to demonstrate the reality of living with ME for World ME Day 2023.
When it comes to ME, it’s crucial to understand that pushing harder can make you sicker. This is a fundamental aspect of the condition that is often misunderstood by those who are not familiar with it.
Post-exertional malaise, which is a hallmark symptom of ME, means that even simple activities like taking a shower or having a conversation can cause a flare-up of symptoms that can last for days or even weeks.
The custom poster maker launched by the World ME Alliance is an important tool for raising awareness about the reality of post-exertional malaise and the need for understanding and support for those with ME.
By creating and sharing posters that reflect the experience of living with ME, we can help to educate the public about the impact of this disease on people’s lives.
Using the poster maker is easy
choose from a range of pre-designed templates
add your photo
write about your experience of post-exertional malaise.
Then download the poster and share it on social media with the hashtags #WorldMEDay and #LearnFromME.
To make the most impact, share a poster on May 12th itself, as well as in the run up to the day.
Following a request from WAMES the Welsh Ambulance Services NHS Trust has updated the information page on ME/CFS on the NHS 111 Wales website ME/CFS, to take account of the 2021 NICE guideline. WAMES is grateful for their willingness to do this.
Symptoms
The page now acknowledges the 4 symptoms needed to diagnose the condition as:
Fatigue
Post-exertional malaise
Problems sleeping
Cognitive difficulties
Diagnosis
Information about diagnosis is taken from NICE:
all 4 of the main symptoms should be present for a minimum of 6 weeks in adults and 4 weeks in children and young people
AND
the person’s ability to engage in occupational, educational, social or personal activities is significantly reduced from pre-illness levels
AND
symptoms are not explained by another condition.
Management
The help that people can expect with management comes from the NICE guideline and includes referral to a ME/CFS specialist team, where available, who will:
Carry out and record an assessment… to confirm the person’s diagnosis and also to help in future management.
Develop and agree a personalised care and support plan.
If your symptoms are severe, your doctor should ask a specialist for advice.
Your management plan should be reviewed regularly.
The page advises against resting completely and taking up vigorous unsupervised exercise but it does say “an exercise plan may be suitable for some people living with CFS /ME, but exercise programmes such as graded exercise therapy (GET) are no longer recommended for everyone with ME/CFS”.
CBT is mentioned as an option which “may help you manage your symptoms but is not a cure… by changing the way you think and behave”. The free online mental health service, Silver Cloud, based on CBT, is recommended.
The biggest disappointment is that the definition of PEM in NICE was not included. Instead the description simply says:
“This is where exercise makes the symptoms worse. Sometimes the effect is delayed and you’ll feel exhausted a few hours after you’ve exercised, or even the next day.”
Unfortunately the NICE guideline doesn’t appear to be accepted in its entirety by the Clinical Advisors Group who have to authorise the text.
What do you think?
Does the page give an accurate introduction to ME/CFS?
Is it ‘Healthcare you can trust – 24/7″ as their logo says?
Does the Welsh translation communicate the same information?
NHS 111 invite your comments at the bottom of the web page. They assure us they read them all.
“We value your feedback. Click here to complete our online survey”
The page is long but if you feel well enough, why not read it (pace yourself!) and give them your comments. If lots of readers highlight the same problems, they will hopefully reconsider…
Maybe you’ve got an idea that it’s about being tired all the time. That would be understandable because some people call it Chronic Fatigue Syndrome (‘CFS’ for short), a name that is despised by most of us who find it so understates and misrepresents our lived experience of the illness.
Some prefer the term Post-Exertional Symptom Exacerbation (PESE) , since, as well as an all-pervading and intense feeling of unwellness (‘malaise’), all the person’s symptoms can intensify.
“I feel like I’ve got heavy weights attached to my body…
“One day, someone actually asked me if I was drunk, because as I get worse, my speech becomes impaired and I lose my balance and bump into things…
“My whole body just feels like its slowing down, like it’s running out of battery… and the more I try to push against that, the worse my symptoms become…
It is when symptoms become worse after:
By sharing your story, you can help raise awareness of this disease and the impact it has on your life, and that of millions of others around the world.
Tag @WorldMEAlliance and @wamesmecfs so we can repost your video!
StudyME is a participant registry which will connect those who want to participate in research studies (wherever you live) to the researchers who conduct them.
The Medical Research Council (MRC) invites applications from researchers that address 1 or more of the research areas identified by the ME/CFS Priority Setting Partnership for ME/CFS research:
Following a request from WAMES the Welsh Ambulance Services NHS Trust has updated the 
