iiinova — where your digital self keeps evolving

That sounds incredible, why the sad face?

As somebody wrote under Dr. Tullers article: the quality of the article seems to be lacking , from what I could gather from the German post linked. And that from the Charité, Berlin. It leaves me shocked.

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Tom Kindlon @tomkindlon.bsky.social · 11/10/2026

ME Research UK: As part of our Symptom Saturday series over the past 2 months, we’ve been exploring research insights into the core symptoms of ME/CFS. For ease of access & sharing, we’ve collated & summarised the info. Follow link for full overview. tinyurl.com/MEcoresympto... #MEcfs #CFS #PwME

ME/CFS core symptoms: Research insights
ME Research UK Symptom Saturday: Research summary compilation
INFORM. INFLUENCE. INVEST. 411% RESEARCH S E0S6942

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RikkaPik @rikkapik.bsky.social · 12h

In my mind the "lost of trust" quest has already been completed. Medical research is an up and down. Practice? Nope. My psychologist was really supportive, but he seems to be an exception, not the rule. Meanwhile the woo-peddlers took the market...

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Tom Kindlon @tomkindlon.bsky.social · 11/10/2026

It has quite often seemed like many proponents of biopsychosocial approaches like GET and graded activity-oriented CBT didn’t want much biomedical research, particularly the type that would challenge their theories e.g. Royal Colleges report on CFS. Not very admirable. #MEcfs #PwME #CFS

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Tom Kindlon @tomkindlon.bsky.social · 16h

Springer Nature Removes Description of "Fatigue" Patients as "Combative" and "Reproachful" - UPDATED by David Tuller virology.ws/2026/10/10/t... Screenshot from latest Science for ME weekly update #MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

Trial by Error by David Tuller Springer Nature Removes Description of "Fatigue" Patients as "Combative" and "Reproachful" - UPDATED
A German paper on chronic fatigue syndrome published by Springer Nature contained derogative language about patients. This resulted into a joint statement with objection from many healthcare providers and scientists. It later turned out the characterisations had been added by a psychiatrist who was responsible editor of the project the paper was part of.
Article l Thread

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RikkaPik @rikkapik.bsky.social · 12h

That is supercool. Keep on sailing, my dear!

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RikkaPik @rikkapik.bsky.social · 21h

Best wishes, dear! And good night...

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Tom Kindlon @tomkindlon.bsky.social · 11/10/2026

Low Vasopressin in Myalgic Encephalomyelitise/Chronic Fatigue Syndrome Vasopressin is also known as antidiuretic hormone www.endocrinepractice.org/article/S153... Screenshot from AMMES October 2026 newsletter #MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

Photo of someone lying, collapsed on sand looking exhausted

With the following text

LOW VASOPRESSIN IN MYALGIC ENCEPHALOMYELITIS/CHRONIC FATIGUE SYNDROME
In a consecutive series of ME-CFS patients, majority had very low vasopressin levels, relatively high plasma osmolality and low urine osmolality, in absence of overt hypothalamic or hypophyseal pathology. Chronic down-regulation of vasopressin mimicking central diabetes insipidus may contribute to the core symptoms of ME/CFS.
Read more here>>

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RikkaPik @rikkapik.bsky.social · 11/10/2026

Wishing you lot of fun and a great day, too. I guess hyperfocus could get one into the flow state, and that is a wonderful place to be in.

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RikkaPik @rikkapik.bsky.social · 10/10/2026

Sometimes it is so hard to decide between two great options!

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Billy Hanlon @bhanlon15.bsky.social · 09/10/2026

George Mason Univ: 'New Study Explores Overlap Between Long COVID and Post-Treatment Lyme Disease' 'Although public attention has shifted away from the pandemic, long COVID remains a significant health concern' science.gmu.edu/news/new-stu...

science.gmu.edu

New Study Explores Overlap Between Long COVID and Post-Treatment Lyme Disease | GMU College of Science

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Tom Kindlon @tomkindlon.bsky.social · 10/10/2026

Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed www.theguardian.com/commentisfre... Screenshot from AMMES October 2026 newsletter #MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

Photo of someone looking pensive with the following text
Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed
I’ve spent my working life covering neglected issues. But few are neglected like the devastating chronic condition ME/CFS (myalgic encephalomyelitis, or chronic fatigue syndrome). In severe cases, the illness shuts down people’s lives almost entirely, causing an extreme loss of energy and a wide range of physical and cognitive symptoms that can prevent patients from working, socialising and, sometimes, even moving or eating. Yet these people have been more or less airbrushed from our minds.
Read more here>>

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RikkaPik @rikkapik.bsky.social · 10/10/2026

I hate my #ME. Either I lay down and my back stops hurting... but then I can't breathe because my asthma kicks in. So I sit up and am able to get oxigen into my body. But them some sadistic mad scientist wraps his homemade chimera of a porcupine and an electric eel around my spine...

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RikkaPik @rikkapik.bsky.social · 10/10/2026

I love the expressions. Lively colors, too.

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Tom Kindlon @tomkindlon.bsky.social · 09/10/2026

From the US Neurocognitive Indices of Long COVID: Dysregulated Engagement of Inhibitory Control and Oscillatory Slowing www.mdpi.com/2673-4087/7/... Screenshot from latest Science for ME weekly update #LongCovid #NeuroPASC #COVIDBrain #PASC #PwLC #postcovid #postcovid19

Neurocognitive Indices of Long COVID: Dysregulated Engagement of Inhibitory Control and Oscillatory Slowing — White et al
"Taken together, these findings clearly indicate that even mild PASC is associated with significant alterations in cell signaling, characterized by oscillatory slowing."
Article | Thread

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Billy Hanlon @bhanlon15.bsky.social · 09/10/2026

Yahoo Health: 'Research offers a clue to why long COVID can leave people mentally drained' 'Researchers found that people with long-COVID fatigue had slightly lower cerebral blood flow and slower, more variable responses during a 20-minute attention test.' health.yahoo.com/conditions/m...

health.yahoo.com

Research offers a clue to why long COVID can leave people mentally drained

A small Swedish study may now offer a clue about what is happening inside the brain. Researchers found that people with long-COVID fatigue had slightly lower cerebral blood flow and slower, more varia...

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purr.in.ink @purrinink.bsky.social · 09/10/2026

A little good luck for you. 😽😽🤍

A fluffy black cat with enormous round eyes and two tiny fangs holds a pink flower against a turquoise background. White handwritten text on black strips reads: “Rumour has it, this black cat brings good luck. It may also knock something off your table or give you a gentle bite. But mostly, it’s here to bring you good luck.”

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Tom Kindlon @tomkindlon.bsky.social · 09/10/2026

"The survey has identified multiple different ways that psychologists can potentially give that support & help people with ME/CFS" Extract from British Psychological Society ME/CFS Guidelines (September 2026 Update) meassociation.org.uk/wp-content/u... #MEcfs #PwME #CFS #MyalgicEncephalomyelitis

Welcome to the third British Psychological Society ME/CFS Guidelines update. We have been carrying out further analysis of the responses to our survey about what people with ME/CFS want psychologists to know to support both the guidelines and a planned research paper. Participants have said very clearly that the guidelines must recognise ME/CFS is a biological illness that cannot be cured by psychological methods. The role of psychology is support. The survey has identified multiple different ways that psychologists can potentially give that support and help people with ME/CFS:
•
Build trust: by believing people, listening compassionately, respecting lived expertise and taking limits seriously.
•
Support life with ME/CFS: including grief, identity change, loss of autonomy, loneliness, uncertainty, hope and changed relationships.
•
Support pacing: by helping people recognise limits, plan around exertion and reduce guilt, shame, self-blame or pressure to push through.
•
Adapt care: so psychological support is accessible, paced, flexible and appropriate for the person’s severity and energy limits.
•
Support mental health safely: by adapting work on anxiety, depression, trauma or other difficulties so ME/CFS symptoms are not misinterpreted.
•
Work with wider systems: including families, carers, schools, employers, healthcare, benefits, social care and voluntary-sector support to help support and educate others.
•
Reduce harm: challenge psychologization, coercion and patient blaming. Avoid minimising comments and inappropriate pressure to increase activity.
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Help process trauma: disbelief, dismissal, psychologisation, delayed diagnosis, medical gaslighting, coercion and previous harmful treatment can impact mental health.
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Signposting to resources: help with practical problem solving and system navigation, including benefits, social care, mobility aids, workplace adjustments, education, housing and finances where appropriate.

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RikkaPik @rikkapik.bsky.social · 08/10/2026

(aerosols), they called it "unspecific irritants", but I also get allergic asthma, and problems with exercise (when I was active, I had a longer warm up period). Asthma reacts very negatively to lying down. ME did not seem to impact lung function all that much (last time that was checked was in May)

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RikkaPik @rikkapik.bsky.social · 08/10/2026

intercostal muscles as you said, I remember telling the doctor way back when that I felt like my chest had been wrapped in banded iron. But as I said, I also have phlegm. As per usual asthma tends to get worse between 4:00-6:00. I am also reacting negatively to damp weather, cold, heat and wind

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RikkaPik @rikkapik.bsky.social · 08/10/2026

I think a bit additional information is in order: I was first diagnosed with asthma in 1987 (ME came after my dance with covid in 22 but took some time to be diagnosed). I experience asthma as phlegm (I hope I am right with the words, non-native here), and I would say it is a stiffness in the

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RikkaPik @rikkapik.bsky.social · 08/10/2026

Asthma really bites me there. I absolutely can't lie down after sleep, that is a programmed asthma attack. I have to sit as much as possible... Asthma and ME really don't play nice together. It does help me to sit cross-legged all day, though, to keep my legs on one level... Chairs are horrible.

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RikkaPik @rikkapik.bsky.social · 08/10/2026

Sounds great! Have a beautiful day!

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purr.in.ink @purrinink.bsky.social · 07/10/2026

⚔️🐾🤍..

A little black cat with large, round eyes wears silver armour and holds a shield and a raised sword. It sits on green grass beneath a softly blended pink, purple and blue sky. White handwritten text above reads: “I will fall, but I will get up. I will fail, but I will try again. I might be scared sometimes, but there’s a brave little heart in me.”

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Tom Kindlon @tomkindlon.bsky.social · 07/10/2026

New CDC study Characterizing Pediatric Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Symptom Burden, Functional Impairment, and Comparison With Adults www.jpeds.com/article/S002... #MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

Objectives
To characterize the clinical, functional, and educational characteristics of adolescents with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and compare selected illness domains with adults in the Multi-Site Clinical Assessment of ME/CFS (MCAM) study.
Study design
Baseline cross-sectional data from adolescents aged 10–17 years enrolled in MCAM were analyzed. Standardized measures included the Short Form-36 (SF-36v2), CDC Symptom Inventory (CDC-SI), Multidimensional Fatigue Inventory (MFI-20), and selected domains of the DePaul Questionnaire. Descriptive statistics characterized the pediatric cohort and bivariate analyses compared adolescents with adults enrolled in MCAM.
Results
Forty adolescents (mean age 15.3 years; 52.5% female) were included. Mean illness duration was 4.0 years. Educational disruption was substantial: 64% received homebound or homeschool instruction, 89% missed school because of illness, and participants missed a mean of 10.8 school days during the preceding month. Physical health-related quality of life was substantially impaired. Persistent post-exertional malaise (PEM), unrefreshing sleep, fatigue, and neurocognitive symptoms were common. Compared with adults (n = 595), adolescents had shorter illness duration and better physical functioning, vitality, and social functioning, whereas mental health scores were similar. Adults reported greater burden across several physical symptom domains although many between-group differences were small.
Conclusions
Adolescents with ME/CFS experience substantial multisystem symptom burden, impaired physical functioning and educational disruption. Many core clinical features were similar to those in adults, supporting the need for early recognition and appropriate clinical and educational support.

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Tom Kindlon @tomkindlon.bsky.social · 07/10/2026

Recording of the 24 September 2026 ME Support webinar featuring Chris Ponting @cgatist.bsky.social is up: www.youtube.com/watch?v=UJYU... #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

THE UNIVERSITY of EDINBURGH
upport - uest Speaker nt with Chris Ponting
ME: ME/CFS & biomarker udies ME Support
Navigating ME/CFS and Long COV.

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Tom Kindlon @tomkindlon.bsky.social · 06/10/2026

Norway Demonstration scheduled for 28th October www.facebook.com/events/18087... www.me-foreldrene.no/markering-pa... Screenshot from latest Science for ME weekly update #MEcfs #PwME #CFS #MyalgicEncephalomyelitis #LongCovid @meforeningen.bsky.social

Norway Demonstration scheduled for 28th October at 3:00 PM
Three patient organisations — The Norwegian ME Association, The ME Parents, and the Norwegian Covid Association — are organising a demonstration outside the Norwegian Parliament demanding a stop of the planned clinical guidelines for fatigue and ME. They ask for a separate guideline and expertise in healthcare for ME and post-infectious illness with PEM. Digital participation will be possible.
Facebook event (Norwegian) l "The ME Parents" website (English translation) l Thread

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RikkaPik @rikkapik.bsky.social · 07/10/2026

Framing matters, after all. (I think I made it this time. Character limit and brain fog don't always play nice).

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RikkaPik @rikkapik.bsky.social · 07/10/2026

decribed (while researching the Royal Free outbreak in 1955) PEM as cardinal feature of the disease (something that was overlooked in later research, but it is still the core of ME). If we could have a medical professionals name as part of the disease, doctors might be able to take it more seriously

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RikkaPik @rikkapik.bsky.social · 07/10/2026

diseases called Morbus (name of the doctor first discribing it). That is not used in English, but (name of doctor first describing it)'s disease is used. So Morbus Crohn in German is Crohn's disease in English. I would propose "Ramsays disease" (or "Morbus Ramsay" here). Melvin Ramsay had first

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RikkaPik @rikkapik.bsky.social · 07/10/2026

part and parcel of a whole bunch of diseases and disorders. There have been tries to find a better discription of the symptoms, but most of them are... not really fitting, mostly concentrating on part of the condition, and the most misunderstood part at that. In German there is a whole bunch of

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RikkaPik @rikkapik.bsky.social · 07/10/2026

Okay, starting again. #ME/CFS is not like as a name for our condition. Doctors don't like the ME part, because it does not decribe the condition correctly. The CFS part is so unspecific I know of people who got their depression labed as CFS (because is sounds better then burnout?) and fatigue is

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RikkaPik @rikkapik.bsky.social · 07/10/2026

does not react the same, one does not move the same way. So I had thought that ME should be called Morbus Ramsay in German. That is not done in English, typically, but I just read that "X's disease" is uses, like what we'd call Morbus Crohn is called Crohn's disease.

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RikkaPik @rikkapik.bsky.social · 07/10/2026

we don't really distinguish between fatigue as part of physical conditions and the feeling of exhaustion that comes with depression. I have had depressions for all my adult life and since 22 there is fatigue and I would witness to any court: they are not the same thing. They don't feel the same, one

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Tom Kindlon @tomkindlon.bsky.social · 05/10/2026

I was one of a number of patient scientists and advocates who was interviewed for this sympathetic, open access paper "Patient's knowledge, doctor's ignorance: The production of knowledge about myalgic encephalomyelitis" www.sciencedirect.com/science/arti... #MEcfs #PwME #epatient #epatients #CFS

Abstract
It is usually assumed that patient and doctor know strictly different things: the patient knows the phenomenological aspects of their illness, and the doctor knows its medical aspects. I present a case study, that of myalgic encephalomyelitis, wherein, due to severely dysfunctional institutional knowledge production and transmission mechanisms, the medical aspects of the illness are on the whole better understood by sick people than by their doctors. Indeed, lay scientists within the patient community disseminate and produce science on their disease, ensuring that patients as a whole have reliable knowledge about their disease. By contrast, systemically produced and systemically maintained ignorance on the part of medical professionals is the norm, and may be beyond the specific case study I present.

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RikkaPik @rikkapik.bsky.social · 07/10/2026

I had people give me my diagnosis (not not possible there any more, lack of funds) and they were really understanding. The rest of the medical experts I saw just played hot potato with me and claiming it was my PTSD acting up, it could never be anything else.

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RikkaPik @rikkapik.bsky.social · 07/10/2026

Good night and sweet dreams. Greetings from the already Wednesday people.

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RikkaPik @rikkapik.bsky.social · 07/10/2026

Wishing a good rest for you.

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Billy Hanlon @bhanlon15.bsky.social · 05/10/2026

Tri-City Herald (WA): 'Guest Opinion: COVID-19‘s long-haulers are suffering and need our support' 'our elected officials need to come together in a bipartisan effort to help these unlucky few whose bodies were negatively affected long-term.' amp.tri-cityherald.com/opinion/opn-...

amp.tri-cityherald.com

Guest Opinion: COVID-19‘s long-haulers are suffering and need our support

It’s time to find answers for the unlucky people dealing with continuing effects of COVID-19

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RikkaPik @rikkapik.bsky.social · 06/10/2026

Oh, that reminds me of the last Kings Quest Game I ever played... and KQ II was the first game that was not a textadventure or pong that I have played... Time does fly!

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RikkaPik @rikkapik.bsky.social · 05/10/2026

Floofy power of power-floof?

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Billy Hanlon @bhanlon15.bsky.social · 05/10/2026

July 2020, Cleveland: 'A mild case of COVID-19 is not a mild case of the flu: Long-haulers’ symptoms linger for months, and lasting effects are still a mystery' “Anyone can be a long hauler...we don’t know why this is happening.” - Dr. Christopher Babiuch www.cleveland.com/coronavirus/...

cleveland.com

A mild case of COVID-19 is not a mild case of the flu: Long-haulers’ symptoms linger for months, and lasting effects are still a mystery

COVID-19 patients who call themselves “long haulers" are defined as patients with persistent symptoms that last more than two weeks.Symptoms include extreme fatigues, shortness of breath and brain fog...

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RikkaPik @rikkapik.bsky.social · 05/10/2026

Is it the floof of power or the power of floof?

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RikkaPik @rikkapik.bsky.social · 04/10/2026

Oh, very elegant claws on you! Looks awesome once again. Love the expressions so much, especially Naruto.

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Billy Hanlon @bhanlon15.bsky.social · 04/10/2026

Science Alert: 'Brain Scans of 24 People With Long COVID Reveal Signs of Injury to Dopamine Neurons' "Our findings provide compelling evidence that long COVID involves the loss of dopamine-releasing neurons" www.sciencealert.com/brain-scans-...

sciencealert.com

Brain Scans of 24 People With Long COVID Reveal Signs of Injury to Dopamine Neurons

Scientists have discovered a distinct change in the brains of people with long COVID that might explain some of the illness's most debilitating symptoms.

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