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valebodi.bsky.social
@valebodi.bsky.social
1.6K followers 1.3K following 4.1K posts
Surviving MyalgicE, AAG & CVID to tell the story, patient & advocate w/ a JD. Into MEdical, Social & Climate Justice & Arts. Human neutrino/ PwME = ME apolide/ Gnarled pacer. MEssLand Worldwide https://www.tandfonline.com/doi/pdf/10.2217/fmb-2022-0031
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valebodi.bsky.social
valebodi.bsky.social @valebodi.bsky.social · Jan 7
#MECFS is such a punishing & invisible illness which has nothing to do with fatigue. It’s a neuro-immuno-MEtabolic systemic dysfunction. It takes so much fortitude, endurance and courage to survive 24/7 on the edge of an abyss. We #PwME are reverse marathoners.
valebodi.bsky.social
Leonard Cohen - Everybody Knows (Official Audio)

Everybody knows that the dice are loaded
Everybody rolls with their fingers crossed
Everybody knows the war is over
Everybody knows the good guys lost
Everybody knows the fight was fixed
The poor stay poor, the rich get rich
That's how it goes
Leonard Cohen - Everybody Knows (Official Audio)
YouTube video by LeonardCohenVEVO
youtube.com
February 12, 2026 at 6:20 AM
valebodi.bsky.social
This is potentially not good for #pwME in light of this possible pathoMEchanism: www.meresearch.org.uk/overview-of-...

Key Pathophysiological Role of Skeletal Muscle Disturbance in PASC & #ME/CFS: Accumulated Evidence
@scheibenbogen.bsky.social et al.
Feb 2025
pubmed.ncbi.nlm.nih.gov/39727052/
Painful Side Effect of Statins Explained After Decades of Mystery
Around 10 percent of people who take statins to lower cholesterol experience mysterious muscle pains, causing many to discontinue these potentially life-saving medicines.
www.sciencealert.com
February 11, 2026 at 10:10 PM
Reposted
tomkindlon.bsky.social
2 of 2

Myalgic Encephalomyelitis: International Consensus Criteria (ICC) - Adult and Paediatric

#PwME #MyalgicEncephalomyelitis
MYALGIC ENCEPHALOMYELITIS – Adult & Paediatric: 8 International Consensus Panel Notes: Neurocognitive impairments, reported or observed, become more pronounced with fatigue. Overload phenomena may be evident when two tasks are performed simultaneously. Abnormal accommodation responses of the pupils are common. Sleep disturbances are typically expressed by prolonged sleep, sometimes extreme, in the acute phase and often evolve into marked sleep reversal in the chronic stage. Motor disturbances may not be evident in moderate cases but abnormal tandem gait and positive Romberg test may be observed in severe cases. C. Immune, Gastro-intestinal & Genitourinary Impairments At least One Symptom from three of the following five symptom categories 1. Flu-like symptoms may be recurrent or chronic and typically activate or worsen with exertion. e.g. sore throat, sinusitis, cervical and/or axillary lymph nodes may enlarge or be tender on palpitation 2. Susceptibility to viral infections with prolonged recovery periods 3. Gastro-intestinal tract: e.g. nausea, abdominal pain, bloating, irritable bowel syndrome (IBS) 4. Genitourinary: e.g. urinary urgency or frequency, nocturia 5. Sensitivities to food, medications, odors or chemicals Notes: Sore throat, tender lymph nodes, and flu-like symptoms obviously are not specific to ME but their activation in reaction to exertion is abnormal. The throat may feel sore, dry and scratchy. Faucial injection and crimson crescents may be seen in the tonsillar fossae, which are an indication of immune activation. D. Energy Metabolism/Ion Transportation Impairments: At least One Symptom 1. Cardiovascular: e.g. inability to tolerate an upright position - orthostatic intolerance (OI), neurally mediated hypotension (NMH), postural orthostatic tachycardia syndrome (POTS), palpitations with or without cardiac arrhythmias, light-headedness/dizziness 2. Respiratory: e.g. air hunger, laboured breathing, fatigue of chest wall muscles 3. Loss of thermostat…
February 11, 2026 at 7:47 PM
Reposted
tomkindlon.bsky.social
Myalgic Encephalomyelitis: International Consensus Criteria (ICC) Adult and Paediatric

#PwME #MyalgicEncephalomyelitis

1 of 2
Myalgic Encephalomyelitis: International Consensus Criteria (ICC) Adult and Paediatric ● Clinical and Research Myalgic encephalomyelitis is an acquired neurological disease with complex global dysfunctions. Pathological dysregulation of the nervous, immune and endocrine systems, with impaired cellular energy metabolism and ion transport are prominent features. Although signs and symptoms are dynamically interactive and causally connected, the criteria are grouped by regions of pathophysiology to provide general focus. Compulsory Post-Exertional Neuroimmune Exhaustion – PEN’-Ẹ (A) 3 Neurological Impairments : at least 1 symptom from 3 symptom categories (B) 3 Immune/gastro-intestinal/genitourinary Impairments: at least 1 symptom from 3 symptom categories (C) 1 Energy metabolism/ion Transport Impairments: 1 symptom (D) A. Post-Exertional 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: 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. Post-exertional symptom exacerbation: e.g. acute flu-like symptoms, pain and worsening of other symptoms 3. Post-exertional exhaustion may occur immediately after activity or be delayed by hours or days. 4. Recovery period is prolonged, usually taking 24 hours 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 preillness 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 (meet criteria, significantly reduced activity level), Moderate (an approximate 50% reduction in pre-illness activity level), severe …
February 11, 2026 at 7:43 PM
Reposted
corpsepilot.bsky.social
"Because the world is so full of death and horror, I try again and again to console my heart and pick the flowers that grow in the midst of hell."

Herman Hesse
February 8, 2026 at 3:09 PM
Reposted
drruth.bsky.social
I’ve cared for young women dying of cervical cancer. It’s devastating and largely preventable now with the HPV vaccine.

When a vaccine prevents cancer, the question isn’t whether to re-examine it, it’s why would we hesitate?

#medsky #oncsky #obgynsky
cidrap.bsky.social CIDRAP @cidrap.bsky.social · 2d
CIDRAP Op-Ed: The HPV vaccine prevents cancer. The new ACIP wants to re-examine that.

@jakescottMD

The vaccine has reduced cervical cancer by nearly 90% in women vaccinated as teens and has been studied in >70 randomized controlled trials

www.cidrap.umn.edu/h...

Photo: PAHO
February 10, 2026 at 11:29 PM
valebodi.bsky.social
Dr. Jarred Younger explains E. A. Worthey’s lab latest eye opening research paper: A precision approach to understanding #ME/CFS

Uncovering the genetic architecture of ME/CFS: a precision approach reveals impact of rare monogenic variation
link.springer.com/article/10.1...

@lizworthey.bsky.social
083 - A precision approach to understanding ME/CFS
YouTube video by Jarred Younger, PhD
youtube.com
February 11, 2026 at 6:12 AM
Reposted
levostregc.bsky.social
"I remember the newspapers dying like huge moths."
-*Fahrenheit 451*
February 10, 2026 at 6:39 AM
Reposted
davidwilloughby.bsky.social
Erst kommt das Fressen, Dann kommt die Moral.

Happy Birthday Bertolt Brecht!
February 10, 2026 at 9:04 AM
valebodi.bsky.social
HYPOTHESIS AND THEORY article
Front. Physiol., 01 February 2026
Sec. Striated Muscle Physiology

The potential causes of myasthenia and fasciculations in severely ill #ME/CFS patients: the role of disturbed electrophysiology
Klaus J. Wirth
Klaus J. Wirth, Jürgen M. Steinacker
Frontiers | The potential causes of myasthenia and fasciculations in severely ill ME/CFS patients: the role of disturbed electrophysiology
Patients with severe myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) are bedridden and suffer from hypersensitivities to light and noise, severe ...
www.frontiersin.org
February 11, 2026 at 5:18 AM
valebodi.bsky.social
Uncovering the genetic architecture of #ME/CFS: a precision approach reveals impact of rare monogenic variation

Results
Findings revealed marked genetic heterogeneity, including large-effect rare and more common variants. Implicated pathways included ATP generation, oxidative phosphorylation, fatty
Uncovering the genetic architecture of ME/CFS: a precision approach reveals impact of rare monogenic variation - Journal of Translational Medicine
Journal of Translational Medicine - Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a disabling and heterogeneous disorder lacking validated biomarkers or targeted therapies....
link.springer.com
February 11, 2026 at 4:45 AM
valebodi.bsky.social
The German Accident Insurance (Deutsche Unfallversicherung) forces people with #MECFS to undergo diagnostic tests as part of the evidence gathering process for expert opinions, tests that can be extremely harmful to the patients – my exclusive investigation @riffreporter.bsky.social is available ⬇️
February 10, 2026 at 10:14 PM
Reposted
sanctorium.bsky.social
Things are not as easily understood nor as expressible as people usually would like us to believe. Most happenings are beyond expression; they exist where a word has never intruded.

Rilke, Letters to a Young Poet
February 10, 2026 at 4:57 PM
valebodi.bsky.social
In a cohort of 3305 patients, neurological symptoms were reported in 35.4% cases.3 A recent longitudinal study further demonstrated that patients with long COVID may experience heightened neurological risks that remain for 2 years.4 Notably, several of these neurological symptoms resemble those
Choroid plexus alterations in long COVID and their associations with Alzheimer's disease risks
INTRODUCTION Choroid plexus (ChP) enlargement is a neuroimaging biomarker of neuroinflammation and neurodegeneration. However, evidence of ChP structural and perfusion alterations in long coronaviru...
alz-journals.onlinelibrary.wiley.com
February 10, 2026 at 4:13 PM
Reposted
drelke.bsky.social
A harrowing account of applying for care funding for severe ME

#LongCovid
#ME
In my view, a lack of knowledge about ME has also been influential; in particular, a lack of understanding that PEM can lead to long-term deterioration (and has done on several occasions, in James' case). This means that the risks involved in his care and the level of complexity have not been recognised, and nor has the extent of his limitations. Most difficult to read in our most recent rejection was a persistent framing of James' needs as preferences: that he prefers not to verbalise and that he does not like having people in his room with him. Would they say someone with a severe nut allergy does not like peanut butter? That an asthmatic prefers not to breathe?
February 10, 2026 at 10:37 AM
Reposted
lucibee.bsky.social
As Karen points out in her blog, the lack of (or extreme difficulty obtaining) CHC funding for people with very severe ME is another failure of the #MEDeliveryPlan.

The Plan simply does not mention it.

Astounding. 😖
February 10, 2026 at 3:21 PM
Reposted
mprnews.org
Super Bowl viewers Sunday speculated that 5-year-old Liam Conejo Ramos appeared in the halftime show. In fact, he has been in hiding with his family.

“He can’t sleep well at night. He wakes up three or four times a night screaming, ‘Daddy, Daddy,’” Liam's father Adrian Conejo Arias, said.
‘He’s not the same’: Father of Liam Conejo Ramos says 5-year-old continues to suffer
Some people thought they say the 5-year-old during the Super Bowl halftime show. But Liam is still in hiding with his family, after he and his father were detained and then released from a Texas deten...
www.mprnews.org
February 10, 2026 at 1:11 AM
Reposted
propublica.org
1/ ProPublica collected handwritten letters in mid-January from children held at the Dilley Immigration Processing Center, the same facility where 5-year-old Liam Conejo Ramos was taken.

Hundreds of kids are still detained.

We’ll let the children’s words speak for themselves. 🧵
February 9, 2026 at 12:25 PM
Reposted
propublica.org
6/ “When I arrived every night I cried and now I don’t sleep well, I felt that being here was my fault and I only wanted to be on vacation like a normal family.”

9-year-old Maria Antonia Guerra Montoya, detained on her way to Disney World, spent 113+ days at Dilley.
Page 1 of a child’s handwritten letter, written in pencil in Spanish. Colorful doodles of a rainbow and hearts are found throughout the page. Translation: “I am Maria Antonia Guerra Montoya and I have been 113 days in detention I miss my friends and I feel they are going to forget me. I am bored here. I already miss my country and my house, I came on vacation for 10 Days and they took me into an ice office an officer interrogated me 2 hours without my mom, I was traveling with flight attendant because my mom lives in new york, they only wanted to arrest my mom, because my mom didn’t have documents to live in U.S.A., I always traveled with my tourist visa but ice used me to catch my mom and now I am in a jail and I am sad and I have fainted 2 times here inside. When I arrived every night I cried and now I don’t sleep well, I felt that being here was my fault and I only wanted to be on vacation like a normal family.” Page 2 of a child’s handwritten letter, written in pencil in Spanish. Translation: “They don’t give me my diet I am vegetarian, I don’t eat well, there is no good education and I miss my best friend julieta and my grandmother and my school I already want to get to my house. Me in dilei [Dilley] am not happy please get me out of here to colombia.” Below the text is a drawing of the girl and her mother in the government-issued gray sweatsuits of the detention center.
February 9, 2026 at 12:38 PM
Reposted
lareviewofbooks.bsky.social
"Addressing these legacies is, we believe, essential not just for the health and well-being of patients and providers but for the credibility of medicine itself." https://lareviewofbooks.org/article/medical-education-yale-university-american-eugenics-society-legacies/
February 9, 2026 at 10:18 PM
Reposted
nicholasgrossman.bsky.social
“Collection of Handwritten Letters from Children in Detention Center” sounds like an exhibit in the Holocaust Museum.
propublica.org ProPublica @propublica.org · 3d
1/ ProPublica collected handwritten letters in mid-January from children held at the Dilley Immigration Processing Center, the same facility where 5-year-old Liam Conejo Ramos was taken.

Hundreds of kids are still detained.

We’ll let the children’s words speak for themselves. 🧵
February 9, 2026 at 6:31 PM
Reposted
cidrap.bsky.social
New analysis links flu vaccination to 18% lower odds of heart attack

The findings of the meta-analysis draw on data from more than 23 million people.

www.cidrap.umn.edu/i...
February 9, 2026 at 10:18 PM
valebodi.bsky.social
This appointment took place in 2021. Looking back, the situation infuriates me. I cannot comprehend how, at nineteen years old, I was expected to eloquently articulate an experience which often lies beyond the powers of language. Havi Carel, a philosopher who studies illness through a
Articulating Pain: Online Support Groups and Chronic Illness
Years of chronic illness left Eve McDonald frustrated by the lack of language available to describe her pain. Rather than submitting to suffering in silence, she chose to piece together a new langu…
thepolyphony.org
February 9, 2026 at 10:14 PM
Reposted
abrokenbattery.bsky.social
FOI response shows uptake of ME/CFS e-learning from the government delivery plan:

• Intro: 371
• Community care: 101
• Severe ME: <50

From a workforce of ~188k doctors & ~423k nurses

This is the problem when training is “promoted” and not mandatory.
lucibee.bsky.social Lucibee @lucibee.bsky.social · 3d
About a month ago, I made a FOIA request to the NHS England Learning Hub about their new learning modules on ME/CFS...

🧵 1/n
Email sent to NHS elearning enquiries on 12 January 2026. Subject - Request for information. Dear NHSE elearning hub, I am making a freedom of information request (FOIA 2000) for the following data. In 2024/5, the NHS England elfh e-learning hub introduced 3 new modules on ME/CFS: 1. An introduction to ME/CFS (May 2024). 2. ME/CFS: guidance for community-based healthcare practitioners (January 2025). 3. Managing Severe ME/CFS (September 2025). Please can you tell me how many people have completed each module to date (from date of introduction), and what the breakdown is for logins by NHS staff (nhs.uk), and those in government (gov.uk), academic (ac.uk), and social care sectors (if available). I am happy for your response to be sent to this email address. Many thanks for your help, Lucy B
February 9, 2026 at 5:30 PM
Reposted
julialmv.bsky.social
This study is so well done and I can't wait to see the results.

Highly encourage people with ME and those who provide health care for them to participat:
restandmecfs.com
February 9, 2026 at 6:33 PM