The Real McCoy

@rippermd41.bsky.social

2298 Followers 910 Following

My life runs by the Murphy’s Law of illness: If something can go wrong, it will go wrong. Latest one is #MECFS but the laundry list is long. Live in New England

Screenshot of Aranet 4 CO2 monitors CO2 562 ppm (written in green) 41.7 F 30% humidity 755 mmHg
Memorial post from Facebook from Philip Barber • Rest in Peace, Megan, my dear friend [hug emoji, blue heart emoji] Thank you for sharing your journey so transparently and unflinchingly. And most of all, thank you for your kindness. #MillionsMissing #mecfs #MyalgicEncephalomyelitis #pWME Color photograph of a young white woman with blue hair and a nose piercing smiling at the camera. Behind the photograph are illustrations of blue roses and a blue butterfly. Over the photograph text reads: Megan Pendleton Rest in Peace 2025
Screenshot of citations from source at top reads: 12. • Thomas S, Thomas PW, Nock A, et al. Development and preliminary evaluation of a cognitive behavioural approach to fatigue management in people with multiple sclerosis. Patient Educ Couns 2010;78:240-9. doi:10.1016/j. рec.2009.07.001 CrossRef PubMed Web of Science Google Scholar
Screenshot from source linked at top reads: To address these critical gaps, we have developed COVIDEX, a novel, remotely delivered, multimodal rehabilitation programme specifically designed for Long COVID fatigue. COVIDEx integrates patient-centred strategies, including energy conservation techniques, cognitive behavioural approaches and structured pacing principles, to mitigate PEM risks while improving functional capacity. '' The intervention was informed by existing rehabilitation frameworks, which have shown promise in managing chronic fatigue syndromes.12 Our hypothesis is that a structured, individualised rehabilitation approach will improve fatigue and quality of life in Long COVID patients while minimising the risk of symptom exacerbation such as PEM.
Screenshot from source reads: Among the most disabling and defining symptoms of Long COVID is fatigue, which is present in over 50% of cases. A subset of Long COVID patients may experience post-exertional malaise (PEM), which is a pathological condition that may share mechanisms with other post-viral syndromes such as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).3 PEM is a distinguishing feature of Long COVID in which physical or cognitive exertion leads to symptom exacerbation, often lasting days orweeks?
Screenshot from linked protocol reads: Trial design We will conduct a single-centre, randomised two-arm modified Zelen 13 feasibility trial. We will use a 1:1 randomisation ratio, in which patients will be randomly assigned to receive either the COVIDEx intervention or usual care. We chose a modified Zelen design to enhance participation and minimise disappointment effects and biases (ie, contamination bias). 14-16 Participants will be informed that they are participating in an observational study following the natural progression of Long COVID and costs associated with standard treatments. At the end of their study participation, participants will be debriefed about the trial design and asked to provide consent for the use of their data.
Gray cat with black stripes lying on a soft beanbag licking its paws. Underneath the cat is the text “Living life.” Above and to the right there’s a blurry orange and white cat leaping off the kitchen counter to pounce on the gray cat. Underneath is the text “Myalgic Encephalomyelitis (ME).”
Screenshot of tweet from CrunchME @wecrunchme CrunchME has a database of clinical trials with any BPS nonsense stripped out - and if we've missed something, if you flag we will review and remove if appropriate: crunchme.notion.site/clinical-trials We will also be considering a 'near me' feature with location search on our site Image of a gradient from black to white with the text The Evidence & Insight Base To Crunch IACCs Clinical Treatment Trials | Notion From crunchme.notion.site 7:21 AM • Dec 7, 2025 • 560 Views
Screenshot from Visible’s Dec 6, 2025 message on their clinical trials feature reads: Selective removal or inclusion of studies would mean replacing the judgment of the independent review boards responsible for participant safety with our own. If we start removing individual trials, we open the door to decisions that could become subjective or unevenly applied, and it would place us in a role that belongs with established ethics review bodies. That isn't a role we can or should step into.
Video of Mark Bonnar looking directly into the camera and asking people to donate to Action for ME as part of the Big Give Christmas Challenge. Bonnar is a white man in his 50s with gray hair and beard. He speaks in a Scottish accent.
Screenshot of tweet from Mark Bonnar @mark_bonnar Please donate between the 2nd and the 9th of December and your donation will be doubled!! Give what you can to help people with ME and Long Covid. Thank you #BigGive #ChristmasChallenge #MECFS #MyalgicEncephalomyelitis 12:40 PM • Dec 2, 2025 • 9,958 Views Includes thumbnail image of a video 1:08 long of Mark Bonnar sitting on a pink couch talking about ME. Full video in next post.
Screenshot of a wordcloud made out of white text on a black background. Most used words: others infection, alttext, called, condition, baseline autism, care, cognitive, mask article school, postexertional autistic link makes pain dysautonomia stop myself pacing decline tried likely head teen malaise medical keep friends gets fatigue symptoms sleep less doctors during risk believe husband mcas hard started exertion chronic conditions illness books mecfs (larger font, bolded as most used) those find patient kids longcovid avoid bedbound call drop crash help health wish patients docs covid doctor rest energy severe criteria emotional research community least talk mins exercise wonder below face symptom tell hope push researchers common body syndrome favorite ridiculous feedback hypermobility, brain, trigger, family, easier, dark, experience, without, wrong
Screenshot of tweet from Todd Davenport @sunsopeningband PESE = symptoms worsen with exertion, says nothing about latency between onset and stressor nor recovery period PEM = delayed symptoms after stressor, prolonged recovery PEM is an energy problem. Signs/symptoms also may coincide with dysfunction in a number of other systems. 3:14 PM • Nov 26, 2025 • 4,060 Views
Screenshot of ICC criteria from MEpedia reads: Postexertional neuroimmune exhaustion (PENE pen'-e): Compulsory This cardinal feature is a pathological inability to produce sufficient energy on demand with prominent symptoms primarily in the neuroimmune regions. Characteristics are as follows: 1. Marked, rapid physical and/or cognitive fatigability in response to exertion, which may be minimal such as activities of daily living or simple mental tasks, can be debilitating and cause a relapse. 2. Postexertional symptom exacerbation: e.g. acute flu-like symptoms, pain and worsening of other symptoms.
Screenshot of text reads: JOHN AND SOPHIA ZASLOW PRIZE The result of the generosity of Stephen L. Zaslow, MD, MED '58, and his wife Francine L. Zaslow, this annual prize is awarded to the graduating student who best exemplifies the qualities of spirit, mind, and heart shown by John Zaslow, MD, (his father) during fifty years of general practice in Brooklyn, New York. Dr. Zaslow was described by his son as "a compassionate healer, an astute diagnostician, and a practical therapist of body and soul. His devotion to his patients embodied Frances Weld Peabody's secret that the care of the patient is caring for the patient." His mother, Mrs. Sophia Zaslow, was a lifelong companion at home and at the office where she was receptionist, secretary, bookkeeper and more. The recipient is selected by a committee composed of the clinical department chairs.
Color photograph of a Christmas tree with white lights. The tree is in a dim room so it looks like it’s glowing. Ornaments are varied and include Star Wars, Hello Kitty, Daffy Duck, Totoro, handmade ornaments and ornaments painted with historical scenes. The walls are a pale yellow and two Huck Gee turtle monk prints are visible behind the tree. The entertainment center at the edge is full of board games.
Screenshot from X. Replies by Rob Wust @RobWust • Nov 22 Dear OG, if you want to argue in public with scientist that are looking for a cure and treatment for your disease, it would be helpful to be supportive. Comments like these are extremely discouraging, and we will stop on Monday with research into ME/CFS if this continues. Danke Next reply Rob Wüst @RobWust • 1h 1/n. I want to clarify my earlier comment. I was annoyed that the patient statement about the questionnaire was not accurate and I was not involved in this patient participation step, which contributed to confusion. I'm sorry for the distress this caused...
Screenshot of post from X by Rob Wüst @RobWust Dear OG, if you want to argue in public with scientist that are looking for a cure and treatment for your disease, it would be helpful to be supportive. Comments like these are extremely discouraging, and we will stop on Monday with research into ME/CFS if this continues. Danke 11:16 AM • Nov 22, 2025 • 1,843 Views
Screenshot of Tweet from Rob Wüst @RobWust Dear OG, if you want to argue in public with scientist that are looking for a cure and treatment for your disease, it would be helpful to be supportive. Comments like these are extremely discouraging, and we will stop on Monday with research into ME/CFS if this continues. Danke 11:16 AM • Nov 22, 2025 • 1,843
Selfie of a 40 year old white woman. Her hair is shorn on the sides with the 4 inches on top standing straight up. Her hair is brown with a prominent gray streak in the front. She’s standing in a bathroom with dark gray tile and a gray towel visible behind her.
A green goblin face peeks out from a shadowed tunnel. Tree roots and greenery cover the roof of the tunnel. Text reads This is who you’re trying to make socialize. Watermark reads @lidapavlova
Color photo of chocolate and cream dachshund with his hind legs on a couch and his front paws on the window sill looking out. He looks alert with his ears perked up. Half the window behind him is painted with shapes of various colors and looks like stained glass.
Color photo of Finn, a chocolate and cream dachshund, standing up on his hind legs to look at a white’s tree frog in a travel terrarium. The frog and dog are staring at each other. The terrarium sits on a blue and black rollator and has a red and green plant inside.
Screenshot of text reads: Today 7:30 pm Your dog got his head stuck in a blanket again
Screenshot from link. Highlighted text reads: The interventions will be tested in a sequential manner for each patient to estimate which intervention has the best effect (accepting the fact that there will be a summative effect of interventions). Rest of text above highlighted area: Design: Exploratory prospective study to develop and test a DMP comprising of a) increased fluid intake b) increased salt intake c) regulate food amount and type and d) optimise physical/ cognitive/ emotional exertion to avoid crashes, e) calf muscle function and e) pharmacological agents in select cases of Postural Tachycardia Syndrome (PoTS) and Orthostatic Hypotension (OH).
An article from THE INDEPENDENT Monday 9 November 1987 titled A year in rough waters Clare Francis talks to Penny Jackson about the loneliness of a mystery illness Blurry photo of Clare Francis a white woman of middle age sitting and smiling CLARE FRANCIS is used to rising to a challenge. Her solitary achievements are the stuff of public acclaim. But, for the last 12 months, the greatest challenge of her life has been fought quietly, day by day, away from the public gaze. Her lost year, as she calls it - even though, two weeks ago, it saw the publication of her third novel - began when a mystery ill- ness struck her, virtually over-night. "I had no warning and, over the period of a week, I was reduced to a state of such exhaustion that I knew something desperate had happened. The best description I can give is that it was like having lead in my veins." Physical tiredness is no stranger to Clare Francis. Two single-handed crossings of the Atlantic as well as skippering a yacht in a round-the-world race, have tested to the utmost her powers of endurance. "People underesti- mate what is needed to cross the Atlantic. The kind of tiredness I experienced, even the moments of fear, bore no comparison with how I felt with this illness. After two weeks, I began to feel this was something I might never recover from. I knew I wasn't going to bounce back." In fact, it was not until 10 months later that she was even given a name for her illness - post-viral fatigue syndrome, in ayman's terms, or rather myalgic encephalomyelitis, now known as ME. Like the many thousands of sufferers, Clare Francis's initial visit to a GP served only to depress her further and increase celings of helplessness. "I knew that this was something that had struck me from outside, something I had no control over, yet my doctor treated me to ques- such as, 'Have you been overdoing it? How is your sex life?' -even though I could barely walk into the surgery. Alt text continued in next image.
Screenshot from linked article reads And the same issue is likely affecting long COVID research as well, Todd Davenport, PT, DPT, PhD, professor and chair of the Department of Physical Therapy at the University of the Pacific, Stockton, California, told Medscape Medical News. "The observation of ME in long COVID has brought renewed importance to the need to use specific case definition criteria in intervention studies. My preliminary work with students has identified a similar trend in long COVID exercise studies as Wormgoor has found in ME/CFS. The mixing of participants who may and may not respond normally to physical loading is probably also now confounding results in long COVID literature."
Black and white photo of a black and tan dachshund with 2 plushie black and tan dachshund heads sewn to her harness. It makes her look like a 3 headed dog.
Bar graph from Crunch ME. Title: Post-Exertional Malaise (PEM) seems under-represented in both the ME/CFS and Long COVID scientific literature X axis is years 2020-2024, y axis is % publications mentioning PEM. Long Covid is in red, ME/CFS is in blue. 2020 Long Covid (LC) is 0.0% ME/CFS is 8.21% 2021 LC 0.68% ME/CFS 7.99% 2022 LC 0.89% ME/CFS 10.1% 2023 LC 1.52% ME/CFS 14.12% 2024 LC 2.14% ME 12.85% Data Source: PubMed | Licensed Under CC BY 4.0 Note: Up-to-date clinical case-definitions require PEM for ME/CFS diagnosis, and PEM is present in roughly half of Long COVID cases
Screenshot from article in quote post reads: According to Laura Malone, MD, PhD, the doctor who treated Lucas for long COVID, the most common symptoms pediatricians should watch for are profound fatigue and post-exertional malaise, also known as post-exertional symptom exacerbation. This is a debilitating and hallmark symptom of long COVID, where even minor physical or mental effort results in a severe crash, often delayed by hours or days, that can leave a patient bedridden.
Figure from linked paper showing mean scores and breakdown for different severities of ME. Subcategories include: B Walking / Moving around C Being upright D Activities in the home E communication F Activities outside your home G Reactions to light and H Concentration total score A Personal hygiene / Basic Healthy controls score at or just below 6. >Mild scores between 4 and 6 Mild scores between 3 and 5 Moderate scores 2 to 4 Severe scores 0.5 to 3 Very Severe scores 0 to 2 Not included in image but text under figure in paper: Figure 1. Round 5. Mean (+−1 SD) A to H sub-scores and total scores on the FUNCAP55 questionnaire for ME/CFS (n = 1263) respondents and healthy controls (HC, n = 178) according to ME/CFS severity degree which was as follows: very severe (n = 19), severe (n = 136), moderate (n = 733), mild (n = 360), better than mild (n = 15).
Graphic from linked article on pediatric post acute Sequelae (PASC) aka Long Covid in children. Circled area reads: Mental Health/Behavioral Symptoms • Decreased school performance • Brain fog/cognitive difficulties • Low mood • Difficulty with concentration Memory problems • Suicidal behavior • Irritability • Impulsivity • Somatization Emotional lability Conditions • Anxiety • Depression • Posttraumatic stress disorder • Stress and adjustment disorders • Attention-deficit/ hyperactivity disorder • Eating disorders
Screenshot from Beyond All Reason by Julia Doubleday reads: But Long COVID can happen to anyone. We keep saying it. Nobody listens. For convenience I continue to separate "those with Long COVID" who must avoid another infection from those without- who can afford some mystery number of infections. But it's possible your next infection may disable you too. It is for yourself, as much as for others, that COVID is worth avoiding. The "unreasonable" of wearing a mask indoors does not compare to the "unreasonable" of Long COVID plus the "unreasonable" of scrambling to avoid another infection while the still-well-enough people sniff that doing anything to mitigate the virus is simply asking too much of them.
Color photograph of 2 large supplement organizers. One is purple and blue (blue side isn’t visible in this photo) and one is rainbow colored. Both are empty except for Thursday and Friday. The organizers are sitting on a grayish purple sheet.
ME/CFS severity Impact on Patients Life Scale 0 - No symptoms 0-2 - Mild Loss of up to 20% pre ME/CFS baseline function Symptoms start to affect their quality of life Able to: • Be mobile and perform self-care activities independently •Hold a full time job • Participate in social and family activities • Engage in most actrvities. May or not be able to: • Intense Cardiovascular Exercise (due to PEM) Not able to • Be active all day everyday 2-4 Moderate Loss of up to 40% pre ME/CFS baseline function Reduced mobility, and limited activities Needs frequent rest periods Able to: •be mobile and pertorm self-care activities independently • Engage in activities that don't involve moderate cardiovascular exercise May or not be able to: • Hold a part-time job • study part time Not able to: • Hold a full time job or study full time Severe 4-6 loss of up to 60% pre ME/CFS baseline function Mostly house bound Limited to minimal activities of daily living (e.g., face washing, showering) Able to: • Be mobile and perform most self-care activities independently. • Do minimal activities of daily living and basic chores Not able to: • Hold a job or study • Engage in any cardiovascular activity Very Severe loss of up to 80 % pre ME/CFS baseline function Mostly bedridden Able to: • Do Very Minimal activities of daily living • Take care of themselves (use the bathroom/ wash) • Speak or write Not able to: • Leave the house • Do basic chores Extremely Severe continued in next image
Bar graph from Crunch ME titled ME/CFS has one of the worst health-related qualities of life of any disease Above the graph says Health-Related Quality of Life by Disease X axis is name of the condition, y axis is the mean score of EQ-5D 3L ME/CFS 0.47 Bleeding Ulcer 0.63 COPD 0.65 Muliple Sclerosis 0.67 Chronic Renal Failure 0.68 Rheumatoid Arthritis 0.69 Lung Cancer 0.69 Stroke 0.71 Diabetes Type lI 0.72 Colon Cancer 0.74 Diabetes Type I 0.74 Breast Cancer 0.75 Prostate Cancer 0.79 General Population 0.85 Data Source: Hidberg et al. (2015) 'The Health-Related Quality of Life for Patients with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) | CC BY 4.0
Post on X from #MillionsMissing Deutschland @MMissingGermany May 18, 2025 7:47 AM § Auto-translated from German by Grok "Changes in Skeletal in Post-COVID Syndrome and ME/CFS" | Dr. Rob Wüst • Brief Summary Post-Exertional Malaise (#PEM) is the characteristic hallmark of #MECFS and is increasingly described as a central feature inLongCOVID. However, in Dr. Rob Wüst's study, all examined patients met the Canadian Consensus Criteria (CCC), including PEM. The so-called "Long-COVID cohort" differs from the ME/CFS cohort solely in the known trigger - in this case, SARS-CoV-2. Pathophysiologically, however, there are no fundamental differences, suggesting that this is a shared condition with different triggers.
Slightly blurry color photograph of a chocolate and cream dachshund lying like a human in bed with the blankets pulled up over his lower half and tucked under his front paws. He’s asleep and lying on a heating pad on the bed. The sheets are purple and the duvet a dark teal.
Color photograph of a pink and purple frog condo that attaches to the wall of the tank. It has 2 levels and a purple pool. An Australian tree frog is sitting in the pool with his from arms over the railing looking at the camera. In the terrarium you can also see the other frog to the side sitting on an egg hide, multiple vines, a red and green leafed plant and a brown mushroom ledge.
A large Australian green tree frog with a large belly sitting on a brown ledge and leaving up against the glass or the terrarium. She has both of her from pads up against the glass and you can see each toe. In the foreground is the white plastic lid of a Tupperware container.
Screenshot from Dr Copeland’s talk at RECOVER-TLC Text reads: Beneficent Action Reducing exertion: • More capacious framework for time allotment, while acknowledging trial urgency • Use of mobile phlebotemy and at home tests • Requiring PPE at testing sites, and proper ventilation An ASL interpreter is visible on the right hand side. A young white woman with brown hair is frozen mid sign.
Screenshot reads We've talked about the pros and cons of different types of Al before, mostly because I want them to know what they're using. Their least favorite Al is generative Al. They don't like that it takes the artwork and music of artists without asking and without paying them. If Suno Al has a different business model that might help ease their ethical concerns.
White hand holding an iPhone in a purple case. The middle and ring fingers sit under a black strap with the pinkie on top of the strap. The index finger is braced against the side of the phone.
Screenshot reads Engagement Signals While Bluesky doesn't publicly detail all ranking factors, our analysis suggests these engagement signals significantly impact content distribution: 1. Reply-to-like ratio: Posts with active discussions tend to receive wider distribution 2. Repost rate: Content that gets frequently reposted reaches more users 3. Time spent viewing: Posts that users spend more time reading appear to receive preferential treatment 4. User affinity: The algorithm seems to favor content from accounts with whom you regularly engage
Back of purple iPhone case a black silicone band runs through the camera cutout down to the charging cutout. The purple is rubbed off where a hand would fit under the strap.
Photograph of sinjimoru phone strap in its packaging. A black strip is visible along with a photograph of a white hand holding the phone using the strap. The 2nd and 3rd fingers are looped through the strap.
Color photo of a light skinned leg lying on a bed with an aircast on the lower half of the leg. Lighting is dim and red tinted. The sheets are gray, duvet teal green and an air conditioner with gray curtains is visible in the background.
Screenshot of tweet reads Mark S. Zaid @MarkSZaidEsq Follow Abbe Lowell and I represent @CDCgov Director Susan Monarez. Contrary to govt statements, Dr. Monarez has neither resigned nor yet been fired. We have issued the following statement: Screenshot of statement reads Mark S. Zaid & Abbe David Lowell Counsel for CDC Director Susan Monarez August 27, 2025 - 7:03 pm ET First it was independent advisory committees and career experts. Then it was the dismissal of seasoned scientists. Now, Secretary Kennedy and HHS have set their sights on weaponizing public health for political gain and putting millions of American lives at risk. When CDC Director Susan Monarez refused to rubber-stamp unscientific, reckless directives and fire dedicated health experts she chose protecting the public over serving a political agenda. For that, she has been targeted. Dr. Monarez has neither resigned nor received notification from the White House that she has been fired, and as a person of integrity and devoted to science, she will not resign. 7:12 PM • Aug 27, 2025
Screenshot from her lawyers on Twitter Mark S. Zaid & Abbe David Lowell Counsel for CDC Director Susan Monarez August 27, 2025 - 7:03 pm ET First it was independent advisory committees and career experts. Then it was the dismissal of seasoned scientists. Now, Secretary Kennedy and HHS have set their sights on weaponizing public health for political gain and putting millions of American lives at risk. When CDC Director Susan Monarez refused to rubber-stamp unscientific, reckless directives and fire dedicated health experts she chose protecting the public over serving a political agenda. For that, she has been targeted. Dr. Monarez has neither resigned nor received notification from the White House that she has been fired, and as a person of integrity and devoted to science, she will not resign.
Screenshot of poll by me on Twitter @TheRealMcCoy aka Meghan @RipperMD41 If you answered "yes" PEM lowered your baseline, did it ever recover? If yes, reply with how long it took your baseline to recover. If no, how long have you been at your lowered baseline? #MECFS #LongCovid Yes 24.4% No 57.8% Show Answers 17.8% 90 votes • Final results 9:54 PM • Aug 20, 2025
Screenshot of poll from me on Twitter @TheRealMcCoy aka Meghan @RipperMD41 If you have #MECFS or #LongCovid did post-exertional malaise (PEM) ever lower your baseline? Yes 82.5% No 6.6% Show Answers 10.8% 212 votes • Final results 9:53 PM • Aug 20, 2025
Poll from me @TheRealMcCoy aka Meghan @RipperMD41 on Twitter Out of curiosity, do your healthcare practitioners know what post-exertional malaise is? #MECFS #LongCovid Yes 8.7% Yes (b/c | taught them) 18.5% No 62% Show Answers 10.9% 92 votes • Final results 8:29 PM • Aug 15, 2025
Screenshot of Chapter 4: Post-exertional malaise (PEM) from Bateman Horne Clinical Care Guide: Managing ME/CFS, Long Covid and IACIs. Highlighted text reads: multiple studies have shown GET can trigger severe PEM episodes and potentially cause lasting functional deterioration in ME/CFS patients.
Screenshot of poll I ran on Twitter on Aug 20, 2025 If you answered "yes" PEM lowered your baseline, did it ever recover? If yes, reply with how long it took your baseline to recover. If no, how long have you been at your lowered baseline? #MECFS #LongCovid Yes 24.4% No 57.8% Show Answers 17.8% 90 votes
Screenshot of tweet from me The Real McCoy aka Meghan @rippermd41 Some PEM I recovered from, others eroded my baseline bit by bit. Pre-ME my FUNCAP score was 5.67 out of 6 Fall 2019 - 5.11 Winter 2020 - 4.81 April 2021 - 4.55 Jan 2022 - 3.74 May 2023 - 1.96 Sep 2024 - 1.8 Today - 1.7 #MECFS 10:01 PM • Aug 20, 2025 • 799 Views
Screenshot of a poll I performed (@rippermed41) on Twitter from Aug 20,2025 If you have #MECFS or #LongCovid did post-exertional malaise (PEM) ever lower your baseline? Yes 82.5% No 6.6% Show Answers 10.8% 212 votes • Final results
Screenshot of a poll from me on Twitter posted Aug 15, 2025 Out of curiosity, do your healthcare practitioners know what post-exertional malaise is? #MECFS #LongCovid Yes 8.7% Yes (b/c | taught them) 18.5% No 62% Show Answers 10.9% 92 votes • Final results
Screenshot of tweets from Todd Davenport @sunsopeningband Maybe it's just another day ending in "y" around here but l'll volunteer we can never do enough to educate health care practitioners about PEM— the thing that breaks all the rules. We simply can never have enough caution and clarity surrounding PEM, particularly how to do no harm. 8:48 PM • Aug 15, 2025 • 8,530 Views Next tweet reads In trying to understand this confusing phenomenon, l've spent more times wrong than right. After all, as a researcher all your best ideas are still just hypotheses and as a clinician the best you'll ever do is still considered practicing. The greater pursuit isn't to be right...
Bar chart from Crunch MElooking at Post-Exertional Malaise (PEM) seems under-represented in both the ME/CFS and Long COVID scientific literature. Long Covid (LC) is red and ME/CFS blue. Y axis is % publications mentioning PEM. In 2020 LC is 0, ME/CFS is 8.21 % 2021 LC is 0.68 %, ME/CFS is 7.99% 2022 LC is 0.89% ME/CFS is 10.1 % 2023 LC is 1.52%, ME/CFS is 14.12% 2024 LC is 2.14%, ME/CFS is 12.85% Underneath reads Data Source: PubMed | Licensed Under CC BY 4.0 Note: Up-to-date clinical case-definitions require PEM for ME/CFS diagnosis, and PEM is present in roughly half of Long COVID cases
Screenshot of ICC from above linked source Postexertional neuroimmune exhaustion (PENE pen’-e): Compulsory A. This cardinal feature is a pathological inability to produce sufficient energy on demand with prominent symptoms primarily in the neuroimmune regions. Characteristics are as follows: 1. Marked, rapid physical and/or cognitive fatigability in response to exertion, which may be minimal such as activities of daily living or simple mental tasks, can be debilitating and cause a relapse. 2. Postexertional symptom exacerbation: e.g. acute flu-like symptoms, pain and worsening of other symptoms.