Lindsay Skipper @LindsaySkipper

📌 Pinned Tweet 2.0 (meant to be shared) #UniteToFight2024 Largest global #LongCovid & #MECFS Conference ✅ Free access ✅ 100% online ✅ Inclusive and interactive 📅 Date: 15th-16th of May 2024 9:00 am-7:15 pm (CEST) More than 35 speakers from all over the world 🌍 More…

📢PHYSIOTHERAPISTS IN SHETLAND📢 Genuinely covid cautious business, cool use of CO2 monitors to air out rooms between treatments until they are at outside levels. Great work @YaspShetland . Keep sending in places you know safeinside.co.uk/massage-physio…

ONS LONG COVID DATA: I’m still working through the raw data released yesterday by ONS revealing the prevalence of Long Covid in England & Scotland. Some interesting (& concerning) data points are emerging so I wanted to do a quick thread on what it reveals for CHILDREN… 🧵

Office for National Statistics (ONS) @ONS

3 days ago

ONS LONG COVID DATA: I’m still working through the raw data released yesterday by ONS revealing the prevalence of Long Covid in England & Scotland. Some interesting (& concerning) data points are emerging so I wanted to do a quick thread on what it reveals for CHILDREN… 🧵 https://t.co/nv40KG7m4t

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👀 We need research into “long long covid”. In a significant proportion of people this condition goes on for YEARS.

Long Covid SOS @LongCovidSOS

3 days ago

👀 We need research into “long long covid”. In a significant proportion of people this condition goes on for YEARS.

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🧵The @ONS have published #LongCovid prevelence data from the Winter CIS England+Scotland only ❗️2 million (3.3%) have #LongCovid ❗️1.5 m adversely affected ❗️381k severely impacted ❗️71.1% have had symptoms a year or more ❗️51.3% 2 years + ❗️30.6% 3 years + 600k people 1/3

Long COVID symptoms adversely affected the day-to-day activities of 1.5 million people (74.7% of those with self-reported long COVID). 381,000 (19.2%) reported that their ability to undertake their day-to-day activities had been “limited a lot”.

@eskabadu There are cognitive, emotional, and environmental triggers, maybe more. What do they have in common? A need for energy to accommodate "loading." For example, the brain is an energy-hungry structure. Maladaptation to cognitive stress fits with PEM as deficient energy metabolism.

@eskabadu There are lumpers and there are splitters. The splitters happen to be winning the scientific literature right now. Now back to the idea of stressor.s I'm a physio and an exercise scientists, so you're going to hear a lot about physical activity as a stressor. But that's not all.

@eskabadu Cognitive dysfunction? PEM. Gastrointestinal disturbances? PEM. Dysautonomia? PEM. Immune hyper- or hypofunction? PEM. Etc, etc, etc. The point is that looking at each symptom individually potentially misses an important "big picture."

@eskabadu Anyway, the upshot of PEM/PENE is that all the individual signs and symptoms people like to track on ME and Long Covid in cross-sectional studies might well be PEM. Soul-crushing fatigue times infinity? PEM. Sleep disturbance? PEM. Palpitations? PEM. Shortness of breath? PEM.

@eskabadu At the risk of making this thread too long, the best characterization of PEM isn't even called PEM. It's called post-exertional neuroimmune exhaustion, but the term never caught on, so I still call it PEM, which I don't totally like either. Words are hard. pubmed.ncbi.nlm.nih.gov/21777306/

@eskabadu That last part is important and a lot of smart people get it wrong all the time: PEM itself is not a symptom. It is a whole host of symptoms and signs that occurs following some kind of exertion (more on that soon, I promise), reflecting a complex multi-system pathology.

@eskabadu Not only do we see differences in metabolism and work rate between CPETs, but people with ME/CFS also have signs and symptoms of PEM, so we know those two things are going together. As you point out, PEM itself is *not a symptom.* A common mistake clinicians and researchers make.

@eskabadu The difference between the first and second test reflects changes associated with PEM in people with ME/CFS, as well as "ME-subtypes" of other health conditions. We don't expect big differences between tests. ME/CFS is the only one we see a big difference reliably, during PEM.

@eskabadu My expertise involves two-day CPETs. In this methodology, a first CPET is used as a physical stressor (more on stressors in a minute) to *induce* PEM. A second CPET 24 hours after the first one is then used to measure the physiology of the post-exertional state.

@eskabadu Thanks for this interesting question and set of observations. I appreciate you sharing them, as I also appreciate the chance to share. In the first part of the thread, you asked whether I think CPET measures PEM or the energy deficit associated with it. I think it is the latter.

Excellent information and set of infographics from @YaleSPH Thank you for sharing your knowledge These should be seen by as many people as possible H/t @fitterhappierAJ Individual images in 🧵

People with Long Covid regularly ask 'how will reinfection with Covid affect me?' We & @LongCovidKids addressed this in our 2022 reinfection survey but we need new data to understand it as SARS-CoV-2 evolves We welcome @visible_health new reinfection study, take part if you can

Visible @visible_health

6 days ago

People with Long Covid regularly ask 'how will reinfection with Covid affect me?' We & @LongCovidKids addressed this in our 2022 reinfection survey but we need new data to understand it as SARS-CoV-2 evolves We welcome @visible_health new reinfection study, take part if you can

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These are the people who treat the people with Long Covid. This is how they meet indoors right now. Because THEY SEE and THEY KNOW, and they're not in denial about the nature of the disease.

Rehabilitation Science Research Network for COVID @UofTCOVIDRehab

a week ago

These are the people who treat the people with Long Covid. This is how they meet indoors right now. Because THEY SEE and THEY KNOW, and they're not in denial about the nature of the disease.

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@LindsaySkipper @UofTCOVIDRehab @DrMark_Faghy @LongCOVIDPhysio Well done to all! Absolutely wiped today 😴 One day I will follow my own advice regarding cognitive rest and pacing 🙈 It is just so difficult sometimes. Sending solidarity and healing vibes from another person having a horizontal day. Really not a fan of gravity these days!😴🫠