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rippermd41.bsky.social
The Real McCoy
@rippermd41.bsky.social
2.2K followers 910 following 1.7K posts
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
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rippermd41.bsky.social
This is a very unsurprising word cloud 😂

What can I say? I spend a lot of time lying in the dark thinking about myalgic encephalomyelitis
aka #MECFS
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
December 3, 2025 at 2:51 AM
rippermd41.bsky.social
Davenport explained the difference between PESE and PEM further under his original post.

He’s said in the past he also prefers PENE, but uses PEM since it’s what everyone knows
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
November 30, 2025 at 12:12 AM
rippermd41.bsky.social
Here’s how the ICC defines post-exertional neuroimmune exhaustion (PENE) aka PEM

Source: me-pedia.org/wiki/Interna...

#MECFS
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 ICC criteria from MEpedia reads: 3. Postexertional exhaustion may occur immediately after activity or be delayed by hours or days. 4. Recovery period is prolonged, usually taking 24h or longer. A relapse can last days, weeks or longer. 5. Low threshold of physical and mental fatigability (lack of stamina) results in a substantial reduction in pre-illness activity level. Operational notes: For a diagnosis of ME, symptom severity must result in a significant reduction of a patient's premorbid activity level. Mild (an approximate 50% reduction in pre-illness activity level), moderate (mostly housebound), severe (mostly bedridden) or very severe (totally bedridden and need help with basic functions). Screenshot of ICC criteria from MEpedia: There may be marked fluctuation of symptom severity and hierarchy from day to day or hour to hour. Consider activity, context and interactive effects. Recovery time: e.g. Regardless of a patient's recovery time from reading for ½ hour, it will take much longer to recover from grocery shopping for ½ hour and even longer if repeated the next day - if able. Those who rest before an activity or have adjusted their activity level to their limited energy may have shorter recovery periods than those who do not pace their activities adequately. Impact: e.g. An outstanding athlete could have a 50% reduction in his/her pre-illness activity level and is still more active than a sedentary person.
November 30, 2025 at 12:07 AM
rippermd41.bsky.social
Best compliment? Winning this award.

“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."
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.
November 27, 2025 at 2:42 PM
rippermd41.bsky.social
One thing our family learned with #MECFS is if there’s a holiday you enjoy, start it early.

Our energy is limited, but occasionally we can give ourselves more time.

If you zoom into the bottom you’ll see a hand painted portrait of Sarah Josepha Hall, founder of the national Thanksgiving holiday.
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.
November 27, 2025 at 6:22 AM
rippermd41.bsky.social
If anyone wants an update, he responded with a clarification.

First post is the original that upset a lot of people with ME.

Next 3 posts were added today.

I’ll link what he was responding to in the next post.
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 replies on X from Rob Wüst @RobWust • 1h g... 2/n Some information shared publicly about the questionnaire and our collaboration was not accurate. There is no formal partnership or contractual agreement about publication. The posted questionnaire is also not a final tool, it is a standard step in the validation process. Rob Wüst @RobWust •1h 3/n. We obviously won't stop our research into PEM in long covid and ME after this. My goal is to be transparent about the research so misunderstandings like this don't arise again. I remain committed to rigorous methodology, clear communication, and constructive dialogue. Rob
November 24, 2025 at 9:39 PM
rippermd41.bsky.social
KH I don’t want to discourage you from giving feedback (it’s needed). But so you know what you’re walking into this is how he responded to criticism on X 😬

I’m still in shock that he hasn’t deleted it.

This is the post he was responding to:

x.com/oeg_mecfs/st...
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
November 23, 2025 at 8:06 PM
rippermd41.bsky.social
Agreed, his work on muscles was really good.

I hope it was just a temporary overreaction, but it’s still ridiculous to pull this stunt.
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
November 23, 2025 at 3:45 AM
rippermd41.bsky.social
I have inadvertently landed on the non-binary lesbian haircut per my non-binary teen and their LGBTQ+ group chat.

Post shower it’s okay for a day or two, but because I have wavy hair it eventually stands straight up like bride of frankenstein 😂
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.
November 20, 2025 at 3:45 AM
rippermd41.bsky.social
Your last saved meme is your moral philosophy
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
November 17, 2025 at 8:31 AM
rippermd41.bsky.social
He’s the the most active dachshund we ever owned.

We play fetch 2-3 hours a day.

Walks only energize him more.

Of course he had to bond with the person with #MECFS 🤦🏻‍♀️

Ollie on the other hand sleeps all day.
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 2 chocolate and cream dachshunds lying out on the lawn in the sun. In the from is Ollie looking to the left. Behind him is Finn who is looking off to the right.
November 16, 2025 at 8:17 AM
rippermd41.bsky.social
Finn came to us from the rescue with this game. He takes a toy, covers it with the blanket to chew on it and then like a plush toy he destroys it.

We supervise to avoid harm, but no matter how many toys we get he goes back to this.

Here’s Finn with one of our frogs.
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.
November 16, 2025 at 8:17 AM
rippermd41.bsky.social
I needed a laugh today then my husband sent this text.

For context Finn is a sweet, slightly derpy dachshund with a penchant for destroying blankets.

The blankets end up looking like swiss cheese.

Hence his ability to get his head stuck in one.
Screenshot of text reads: Today 7:30 pm Your dog got his head stuck in a blanket again Color photo of a chocolate and cream dachshund holding a white ball with his tongue hanging out. He’s wearing a teal collar with a name tag that says Finn. He sits on a gray pillow with someone in a gray sweatshirt in the background.
November 16, 2025 at 8:17 AM
rippermd41.bsky.social
Hold up, is it just my brain fog or does the “sequential manner” mean they’re increasing fluid and salt intake separately?
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).
November 15, 2025 at 12:15 AM
rippermd41.bsky.social
Full article with Alt Text

A Year in Rough Water from The Independent 9 Nov 1987.

#MECFS
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. Alt text continued from previous article: He had no medical explanation and, in effect, offered no treatment other than to prescribe a course of anti-depressants. I took them for three days and felt so terrible that fortunately I had the strength of mind to throw them away." If, in the main part, that characteristic strength of personality helped her through the worst moments of the illness, it also militated against her. Her friends were unused to a Clare not able to cope. Sitting with Clare Francis in her elegant Kensington home, it is easy to have some sympathy with her friends who underestimated the extent of her sickness. Petite, betraying her early years as a ballerina, and surprisingly fragile looking, she nevertheless seems an advertisement for glowing health. "Because I needed so much sleep, and was also eating very healthy food I looked bloom-ing. It was impossible to convey, even to close friends, how ill I was feeling, and one even suggested I should see a psychotherapist." For years ME has been dis-missed, particularly in women, as hysteria, even though sufferers have many symptoms in common. "At one stage, I was sent to a neurologist because I was having such terrible pain in my neck. I couldn't hold my head up prop-erly. Then I was sent to a special-ist. He did explain that I was suffering from a virus, but said there was no treatment: I would recover in time. It was at that point I really did wonder whether I could carry on. There have been suicides among ME sufferers, and I can understand why." Hanging over Clare Francis like the sword of Damocles, throughout the long months, was her unfinished book, Wolf Winter, an adventure story, set in Arctic Norway. She had fortunately done her field research and the first draft. The final version and the epilogue were to prove a daunting task. "I forced myself to put in one hour, then, as time went on, two hours' work, before retiring to bed. Alt text continued in next image Alt text continued: At one stage I thought I would have to sell the house. I just had to push on, then when the book was finished I could afford to take a rest." The profound sense of isolation caused by having what seemed an undiagnosable illness was perhaps the hardest thing to live with, says Clare Francis. Far, far lonelier than working on a book or sailing the Atlantic. She lives alone with nine-year-old Tom. and even with the support of a nanny, found the strain unbearable at times. "Many days, I couldn't manage to walk to the end of the road. And even talking to Tom, let alone playing with him, was too much, because my laws ached so much." Research has shown up muscle abnormalities in sufferers, which in severe cases can lead to paralysis. Clare Francis found her vision and hearing deteriorated. "I was taken to see a film to cheer me up, but I left the cinema not having understood a word of the dia-loguc." Her conviction that there must be some help available, came from a friend's mother, a sufferer for 30 years. She put her in touch with a doctor who prescribed her nystatin, an anti-fungal drug which relieved her symptoms. After two months of treatment, Clare Francis feels she has turned the corner. "But you can never entirely rid yourself of the dis-ease. It's there for life, which is why it is vital not to overdo it. Even a cold can cause a relapse." The dark days of feeling as though she were heavily drugged, of being unable to remember simple words and jumbling her sentences are in the past. "I am now taking on work again. I would never do that if I felt I couldn't do the job properly." She wants the full weight of her experience to be used to prevent others having to undergo the additional torment of being medically "written off" But Clare Francis need only look to Wolf Winter for inspiration. Her efforts to complete it have carried it straight in as number four on the bestseller list. • ME Association, PO Box 8, Stanford le Hope, Essex SS17 8EX.
November 11, 2025 at 5:38 AM
rippermd41.bsky.social
While this mostly focused on #MECFS Davenport highlighted that a similar problem is now occurring in #LongCovid

Exercise studies that don’t separate those with and without PEM in LC will only cause confusion in the literature as it has for ME.

www.medscape.com/viewarticle/...
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."
October 31, 2025 at 7:04 PM
rippermd41.bsky.social
This is Maggie.

We dressed her as Cerberus one year and she won “Scariest Dachshund.”

In person the color match between the plushies and her coat was perfect.
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.
October 30, 2025 at 4:11 AM
rippermd41.bsky.social
Would I like more research on PEM?
Definitely.

Both #MECFS and #LongCovid patients say PEM is one of their more disabling symptoms.

It is for me.

Keep in mind 1/2 of LC patients have PEM.

So why does our research landscape look like this? 🤔
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
October 30, 2025 at 2:10 AM
rippermd41.bsky.social
This is the full quote.

@medscape.com doesn’t mention
ME/CFS once in the article.

How this should read instead: Post-exertional malaise (PEM) is the hallmark of #MECFS, a condition found to affect at least 50% of those with #LongCovid.

Why this matters🧵
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.
October 30, 2025 at 2:10 AM
rippermd41.bsky.social
I pair my breakdown with this figure from the original FUNCAP paper.

It shows how different severities of #MECFS scored on the FUNCAP.

It’s from a small sample size, but it’s helpful to see the visual representation.

Source: pubmed.ncbi.nlm.nih.gov/38930014/
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).
October 27, 2025 at 10:26 PM
rippermd41.bsky.social
When you dig into it what the teachers complain about relates to memory, executive dysfunction, impulsivity, emotional regulation, etc.

Check out the area I circled in the graphic on organ system involvement in PASC aka pediatric #LongCovid

Source: publications.aap.org/pediatrics/a...
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
October 16, 2025 at 8:27 PM
rippermd41.bsky.social
Excellent piece.

Every time this discourse rolls around they treat those of us that mask like we’re hypochondriacs.

No we’re the ghosts of infections past.

We plead with you so that you can avoid our fate. In return you mock us.

#MECFS #LongCovid
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.
October 15, 2025 at 8:50 PM
rippermd41.bsky.social
Realized I mostly notice the passage of time because of my supplement organizers.

When every day is the same, it’s hard to know it’s Thursday.

#MECFS #NEISvoid
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.
October 10, 2025 at 12:43 AM
rippermd41.bsky.social
But the bottom can drop out even further with #MECFS

Very Severe ME is often likened to living on the edge of death.

Whitney Dafoe wrote about his experience and created this severity chart www.mdpi.com/2227-9032/9/...

He adds a new level of Extremely Severe 🧵
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 Continued alt text of Whitney Dafoe’s severity chart for ME/CFS Extremely Severe 8-10 Loss of up to 100% of pre-ME/CFS baseline function Extremely Severe A Completely bedridden (possible exception: bathroom) Able to do some or all: • Sit up for extended periods • Work on crafts or projects independently • Communicate via text, computer, social media • Watch TV and listen to music • Tolerate human presence • Pantomime and get spoken response • Listen to speech, read some Not able to: • Speak or write • Process much input, e.g., colors, symbols, labels, sounds Extremely Severe B Completely bedridden (possible exception: bathroom) Able to do some or ali: • Sit up for longer periods • Work on crafts or projects for short periods • Scroll around on phone or computer • Watch short videos and listen to music • Tolerate human presence for longer periods • Pantomime • Listen to speech, read a little Not able to: • Speak or write, text or type • Process much input, e.g., colors, symbols, labels, sounds Extremely Severe C Completely bedridden (possible exception: bathroom) Able to: • Move in bed throughout the day May or may not be able to: • Sit up for short periods • Tolerate human presence for brief periods • Pantomime and interpret pantomime: Not able to: • Work on crafts or projects independently • Communicate on phone, computer, social media • Touch any keys on electronics, text, type • Speak or write • Listen to speech, read • Process input, e.g., colors, symbols, labels, sounds Alt text continues in next image Alt text continued of Whitney Dafoe’s ME/CFS severity chart Extremely Severe D Completely bedridden (possible exception: bathroom) Must hold completely still for parts or all of the day or risk crashing May be able to: • Move to do basic things like use urinal or scratch an itch Not able to: • Move a muscle for parts or all of the day. • Engage in any activity or work while in bed. • Tolerate human presence. • Use any electronics. • Speak, write, pantomime, or communicate in any way. • Listen to speech, read, or interpret pantomime. • Process any input, e.g., colors, symbols, labels, sounds Extremely Severe E Completely bedridden Unable to: • Get out of bed, not even to go to the bathroom. • Move on their own; any attempt results in a crash. • Perform any task independently. • Tolerate any human presence, as it leads to a crash. • Speak, pantomime, write, or communicate in any way. • Listen to speech, read, or interpret pantomime. • Process any input, e.g., colors, symbols, labels, sounds.
September 29, 2025 at 11:42 AM
rippermd41.bsky.social
#MECFS has one of the worst qualities of life

Some diagnostic criteria require at least a 50% reduction in functionality to diagnose ME.

That’s considered “mild” ME on some scales.

And it only gets worse.

By severe you’re housebound and bedbound.

🧵
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
September 29, 2025 at 11:42 AM