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darlingems.bsky.social
Mills
@darlingems.bsky.social
66 followers 110 following 61 posts
One day at a time || severely disabled — LC, ME/CFS, POTS || Disability Advocacy
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Reposted by Mills
kristinwrites.bsky.social
Look at that bottom shelf and let that sink in for a minute.

“Get dressed. Eat. Shower.” Out of reach.

Fortunately eating has become not a problem for me. But I cannot change clothes every day (tho more easily than I used to) and I absolutely cannot shower by myself or frequently.
October 30, 2025 at 5:55 PM
Reposted by Mills
tomkindlon.bsky.social
An article on how being ill with ME, particularly severe ME, is psychologically challenging

meglobalchronicle.wordpress.com/2022/09/25/l...

#SevereME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @ludiekje.bsky.social
thought scramble Gepubliceerd op 25 september 2022 This disease chases you day and night. It keeps you awake at night and when you eventually fall asleep it follows you into your dreams. There is no escape. Being bedridden with severe ME/CFS also means that you have a lot of time. Although time is the most valuable currency in the world and I have much of it, it is useless. Finding distractions is hard. Then you just lie there alone with your thoughts. It’s like being in a lockdown. Not in the house or in the room but in your body. Only you and your thoughts. Nothing else. They are always there. Not to think is not possible. If the body doesn’t function any more, you are left alone with your thoughts. You might have suppressed them in the past but that’s not possible anymore. You can’t go out to clear your mind or distract yourself with sports or partying. You must face them. With them comes fear. Fear about the future.
October 9, 2025 at 6:33 PM
Reposted by Mills
tomkindlon.bsky.social
🧵
"The Trouble With Recovery Stories" by Naomi Whittingham @naomiwhitt.bsky.social (with severe ME for decades)

alifehidden.com/2024/11/05/r...

An excellent, articulate article discussing “Recovery Stories” and the complex impressions and impacts they bring about

#MEcfs #CFS #PwME

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The Trouble With Recovery Stories Posted on 5th Nov 2024 Photo of somebody up a tall mountain near the edge
October 4, 2025 at 8:07 PM
Reposted by Mills
tomkindlon.bsky.social
From Helen Connick who posted this as a comment on my FB page:

"Made a guide for the people I live with, for when I'm getting the worst PEM, to help them help me rest, and understand"

#PostExertionalMalaise #MEcfs #LongCovid
 Medical Guidance: Supporting a Person in PEM (Post-Exertional Malaise) Post-exertional malaise (PEM) is a pathological worsening of symptoms following minimal effort. During PEM, even the smallest demand, conversation, light, sound, movement, can prolong the crash and permanently reduce baseline capacity. The role of family or housemates is to actively protect rest and prevent further harm. Clinical Warning When a person is in PEM, any additional activity, even sitting up, walking across a room, or answering one question, can worsen symptoms, reset recovery, and accelerate long-term decline. Rest must be strictly protected as a medical intervention. Recommended Actions Ensure they are lying flat, comfortable, and do not need to move. Keep the environment dark and quiet (eye mask, blackout curtains, noise control). Bring essentials (water, food, medication) to them so they do not get up. Provide safe, simple meals or snacks within reach, respect dietary sensitivities and intolerances. Choose easy-to-digest foods that do not create extra strain. Buffer household noise and interruptions (children, chores, visitors). Believe and trust them, accept when they say it is a crash and wait until they indicate recovery. Use shorthand codes or signals (such as traffic light card, thumbs-up) to reduce verbal demands. Offer reassurance, remind them rest is treatment, not laziness. Actions to Avoid Do not ask questions or start conversation, even one can overload. Do not ask them to explain or justify what they are experiencing. Do not make them sit up, walk, or fetch items. Do not turn on lights or make noise without consent. Do not touch or stimulate if they are hypersensitive. Do not bring unsafe foods or expect them to make food decisions. Do not encourage them to 'push through', this causes harm. Why This Matters Every additional demand risks worsening symptoms, extending recovery time, and lowering long-term baseline. Believing them without questions and using shorthand c…
October 3, 2025 at 1:12 PM
darlingems.bsky.social
Solid info on PEM
tomkindlon.bsky.social Tom Kindlon @tomkindlon.bsky.social · Sep 28
🧵
4-page article from the ME Research UK Breakthrough magazine on an informative 2020 NIH paper on postexertional malaise

#PostExertionalMalaise #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

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COUNTING THE COST A study from 2020 attempted to capture individuals’ experiences of post-exertional malaise, both in daily life and following exercise testing. Post-exertional malaise (PEM), the cardinal feature of ME/CFS, is profoundly debilitating and often unpredictable, significantly impacting the lives of those affected. Existing definitions of PEM, such as in the NICE 2021 guideline, primarily focus on the worsening of symptoms within a specified timeframe following minimal physical or mental exertion, lasting for days, weeks or longer. However, these clinical definitions lack the depth to truly grasp the nuanced experiences of individuals living with PEM. Quantitative research, which involves the analysis of numerical data, can provide useful information about the underlying mechanisms of PEM, and is crucial in advancing our understanding of ME/CFS. But it does not fully capture a person’s experience of PEM, and qualitative research, in-
September 29, 2025 at 3:21 PM
Reposted by Mills
emilyesfraser.bsky.social
People with mild ME/Long Covid & people who have recovered, please start advocating for the most severe instead of mildwashing the disease & using your story to sell your personal projects while feeding the media narrative of “individual overcoming” 🙏
September 27, 2025 at 8:23 PM
Reposted by Mills
longcovidcollect.bsky.social
New research shows Long COVID isn’t “just fatigue.” Its impact on daily life can be as severe as stroke or Parkinson’s. Worth reading, worth sharing.
Tolerance.ca® - Long COVID is more than fatigue. Our new study suggests its impact is similar to a stroke or Parkinson’s
www.tolerance.ca
September 8, 2025 at 1:42 PM
Reposted by Mills
bhanlon15.bsky.social
Health Rising: “Screaming Immune Activation”: Major Lipkin Study Finds ME/CFS Systems Folding Under the Stress”

“The end product of all these pathological processes, the authors believe, is “systemic inflammation”

www.healthrising.org/blog/2025/09...
"Screaming Immune Activation": Major Lipkin Study Finds ME/CFS Systems Folding Under the Stress - Health Rising
This amazing study shows why so many systems in ME/CFS patient's bodies fold under stress.
www.healthrising.org
September 6, 2025 at 6:24 PM
darlingems.bsky.social
I continue to decline and now I’m dealing with daily neurological issues on top of PEM. It’s an endless gauntlet of bad luck day after day. How do you keep going when you don’t get a break? How do you convince yourself hanging in there is worth it? #pwME #mecfs #pwLC #LC #PEM
August 27, 2025 at 9:52 PM
Reposted by Mills
valebodi.bsky.social
Via @longcovidadvoc.com “And if in fatigue your batteries feel drained, in PEM they’re missing entirely. It’s the annihilation of possibility.” @edyong209.bsky.social
#PEM #ME/CFS #LongCOVID
LONG COVID ADVOCACY “And if in fatigue your batteries feel drained, in PEM they're missing entirely. It's the annihilation of possibility.” ED YONG JOURNALIST
July 3, 2025 at 2:00 AM
Reposted by Mills
tomkindlon.bsky.social
UK research:

Exercise-induced Changes in Microclotting and Cytokine Levels Point to Vascular Injury and Inflammation in People with Long COVID

www.researchsquare.com/article/rs-6...

Screenshot from the Science for ME weekly update

#PASC #LongCovid
Preprint: Research Square Exercise-induced Changes in Microclotting and Cytokine Levels Point to Vascular Injury and Inflammation in People with Long COVID — Callum Thomas et al. "Our findings reveal that submaximal exercise induces a shift in microclot size distribution: specifically, a decrease in the proportion of larger microclots (100–3000 µm²) is accompanied by a relative increase in smaller microclots (> 0–30 µm²) post-exercise." "The patterns demonstrated here suggest that larger microclots undergo fragmentation rather than clearance during exercise"
June 5, 2025 at 1:01 AM
Reposted by Mills
bhanlon15.bsky.social
NL Times: 'Muscles of long Covid patients respond differently to inactivity than healthy people'

'Researchers also saw issues when it came to energy production. This came as a result of malfunctioning mitochondria, which are the energy factories...'

nltimes.nl/2025/05/23/m...
Muscles of long Covid patients respond differently to inactivity than healthy people
The muscles of people who suffer from long Covid or the chronic illness ME/CVS respond differently to a workout after a period of inactivity than the muscles of people with a clean bill of health, a s...
nltimes.nl
May 23, 2025 at 9:04 PM
Reposted by Mills
tomkindlon.bsky.social
In an international survey (n=1534) www.mdpi.com/2075-4418/9/..., 67% of those with ME/CFS reported they never recovered from a crash (that caused postexertional malaise).

Patients & professionals should be informed of this risk.

Exertion has ruined some people's health

#MEcfs #CFS
Table 6. Duration of PEM, illness course, and functioning (N = 1534). Items %(n) Length of prolonged, unpredictable recovery period 95.2 (1460) Within 24 h Between 1 and 2 days Between 3 and 6 days Between 1 week and 1 month Between 1 and 6 months Between 6 months and 1 year Between 1 and 2 years Over 2 years Crash that has never resolved 14.1 (216) 38.9 (596) 58.0 (890) 46.7 (717) 30.3 (465) 13.6 (209) 9.8 (151) 12.3 (189) 67.1 (1029)
May 10, 2025 at 1:48 PM
Reposted by Mills
thesicktimes.org
Games can be sense-making tools, allowing players to vicariously experience the risks of contracting COVID-19, recognize #LongCOVID’s most challenging symptoms, and connect with others amid an ongoing public health crisis.

Read more from @kaatefishman.bsky.social: bit.ly/4iQhmuE
A graphic titled: “Long COVID Mode, Real-world Long COVID symptoms translated into in-game effects.” Below the text, a video game character is shown hunched over, as though struggling to manage a symptom. Energy bars above his head indicate that he is facing reduced vitality, cognitive dysfunction, and reduced stamina. At the bottom of the image, the graphic shows that this mode was created for Elden Ring, The Witcher, and Minecraft, through collaboration with Long COVID Europe. The text reads, “The Sick Times. “Long COVID Mode”: Seeing the crisis through games. By Kate Fishman.” T THE SICK TIMES: "If a bad outcome will only happen if you roll a one, that doesn’t mean it’s not gonna happen." - Zoyander Street, Artist and designer based in the United Kingdom
May 8, 2025 at 3:09 PM
Reposted by Mills
tomkindlon.bsky.social
From ME Research UK:

Having “CFS/ME” deeply impacts “experience of adulthood & relationships, and the consolidation and formation of identity” finds a small Australian study. “People not understanding” was identified as "the biggest struggle" with having the disease

More: tinyurl.com/mr3rr8nx
#CFS
"The biggest struggle with having CFS.... I would love to say it's the fatigue, but honestly, it's not. I can deal with the fatigue. I've dealt with it for so long now... It's people, really, people and doctors and it's people not understanding"
May 6, 2025 at 3:01 PM
Reposted by Mills
tomkindlon.bsky.social
🧵
It would be great if friends of people with ME/CFS or long COVID would take the time to read this. These conditions are very socially isolating and lonely and patients would love to maintain friendships

www.emerge.org.au/how-to-suppo...

#LongCovid #MEcfs

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How to support your friend who lives with ME/CFS or long COVID Home / MECFS Information / How to support your friend who lives with ME/CFS or long COVID Emerge Australia has put together this guide to help you understand what someone with ME/CFS may be experiencing, and to provide some tips to help support them to stay connected.
April 25, 2025 at 6:46 PM
Reposted by Mills
bhanlon15.bsky.social
SciTech Daily: 'Scientists Discover Drug That Could Finally End Long COVID Suffering'

'WEHI scientists discovered a drug that blocks long COVID in mice and may improve acute treatment options beyond current antivirals like Paxlovid.'

scitechdaily.com/scientists-d...
Scientists Discover Drug That Could Finally End Long COVID Suffering
WEHI scientists discovered a drug that blocks long COVID in mice and may improve acute treatment options beyond current antivirals like Paxlovid. WEHI researchers have developed a drug compound that p...
scitechdaily.com
April 20, 2025 at 1:38 PM
Reposted by Mills
me-cfs.bsky.social
There’s a deeply unfair cruelty in ME/CFS, in that the more severe you are, the less you can control the amount of PEM you get. Which means you have less power to stop further worsenings.

The further down you fall in the hole, the more you struggle to find ledges to hold onto.
April 19, 2025 at 4:05 PM
Reposted by Mills
tomkindlon.bsky.social
How I treat my patients with Myalgic Encephalomyelitis, Chronic Fatigue Syndrome (ME/CVS), fibromyalgia or “long COVID” by Prof. Frank Comhaire (in Belgium)

jcimcr.org/pdfs/JCIMCR-...

#MEcfs #CFS
Abstract Common to Myalgic encephalomyelitis, chronic fatigue syndrome and so-called long Covid is the panoply of complaints, with Post Exertional Malaise (PEM) as the most typical symptom. Added to that are permanent feeling of fatigue, decreased capacity to concentrate, so-called brain fog, non restorative sleep, diffuse pain, and – in case of long Covid – respiratory distress. Several recent studies have confirmed my original hypothesis that poor metabolism and energy production by the mitochondria are responsible for the majority of these phenomena. I have suggested that inhibition of Pyruvate dehydrogenase (Pdh) activity is the major reason for this. Pdh inhibition is probably caused by the excess of the phosphatase: Pyruvate Dehydrogenase Kinase (PDK). The latter results from “Systemic Immune Disorder” (what I called “SID”) and inflammation. Based on this hypothesis I have applied oral and infusion treatment modalities which were successful in approximately 80% of 130 consecutive patients. The pivotal substances are sodium dichloroacetate, that reduces PDK, Meldonium, that facilitates intracellular glucose metabolism, and low dose Nalexone, that optimises the function of microglia.
April 18, 2025 at 5:43 PM
Reposted by Mills
bhanlon15.bsky.social
SCV News: 'April 17: Public Health Town Hall on Long COVID'

The Los Angeles County Department of Public Health will host a Town Hall on Long COVID where public health experts & community partners will answer questions on the long-term effects of COVID-19

scvnews.com/april-17-pub...
April 17: Public Health Town Hall on Long COVID - SCVNews.com
The Los Angeles County Department of Public Health will host a Town Hall on Long COVID where public health experts and community partnerswill answer questions on the long-term effects of COVID-19.
scvnews.com
April 15, 2025 at 12:42 AM
Reposted by Mills
me-cfs.bsky.social
What psychobehaviouralists don’t get about ME/CFS is that we desperately wish it was in our head and we just had to push ourselves and we’d get our life back; wish all we had to do was exercise and we would be cured.

But it doesn’t work that way. We tried and tried and now we’re worse off for it.
April 11, 2025 at 7:25 PM
Reposted by Mills
tomkindlon.bsky.social
"'It’s like torture': The tilt table test could be risky for many people with Long COVID" [and ME/CFS] by @jewstein3000.bsky.social in @thesicktimes.bsky.social

thesicktimes.org/2025/04/08/i...

Contains quotes from patients and also some experts in the field

#LongCovid #MEcfs #POTS
Key points you should know: The tilt table test (TTT), commonly given to diagnose postural orthostatic tachycardia syndrome (POTS), a type of dysautonomia, can be dangerous for some people with Long COVID, especially those who experience post-exertional malaise (PEM). It is well-known that the TTT can provoke fainting and even a temporarily stopped heart, but the medical literature doesn’t reflect how many patients can experience debilitating PEM after the exam. Alternative tests, including the NASA lean test and active stand test, are becoming more commonly used because of their safety and accessibility, though there are debates about whether they are as reliable as the TTT. Clinicians also debate whether the POTS diagnostic criteria are too strict in terms of determining who should be treated. For patients who have no choice but to have a TTT, there are methods for mitigating the possible harm, including saline infusions and ample rest and recovery before and after.
April 8, 2025 at 10:52 PM
Reposted by Mills
bhanlon15.bsky.social
Pulse Today: 'Long Covid and ME patients report delays in diagnosis and low satisfaction'

'The parallels seen in the experiences of those with ME/CFS and long Covid suggest ‘significant improvement’ is needed in how patients are diagnosed and cared for'

www.pulsetoday.co.uk/news/clinica...
Long Covid and ME patients report delays in diagnosis and low satisfaction
Patients with ME and long Covid face significant delays in diagnosis and report low satisfaction with specialist services.
www.pulsetoday.co.uk
April 7, 2025 at 12:58 PM
Reposted by Mills
longcovidcollect.bsky.social
According to a new study, people with Long Covid feel they must “prove” their illness is physical to be taken seriously. This pressure is not just exhausting—it’s harmful.
We deserve care that acknowledges the whole truth:
Long Covid is real. And support should never depend on how convincing we are.
Study finds long COVID patients feel pressure to prove their illness is real
People living with long COVID often feel dismissed, disbelieved, and unsupported by their health care providers, according to a new study from the University of Surrey.
medicalxpress.com
April 6, 2025 at 10:35 AM
Reposted by Mills
paulkeeble.co.uk
A tiny little local newspaper vastly outperforms the big guys by describing ME/CFS including a lot of the optional symptoms and just informs people without any spin. Its probably one of the best straight forward "disease you don't know about" articles.

www.getsurrey.co.uk/news/health/...
Little-known condition that makes you 'tired all the time'
The long-term condition has no known cure say the NHS
www.getsurrey.co.uk
April 1, 2025 at 2:12 PM