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RikkaPik

@rikkapik

Suffering from ME/CFS, turning to art to keep (almost) sane. PTSD survior, broken brain lefty and demiace Gen X.

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25.01.2025
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Latest posts by RikkaPik @rikkapik

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Finally another snack cat. #Caturday #ArtonBluesky #Catandcheese

14.03.2026 09:07 ๐Ÿ‘ 1 ๐Ÿ” 1 ๐Ÿ’ฌ 0 ๐Ÿ“Œ 0
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14.03.2026 09:02 ๐Ÿ‘ 12 ๐Ÿ” 1 ๐Ÿ’ฌ 0 ๐Ÿ“Œ 0
Four-panel comic on a teal background featuring a fluffy black cat with sleepy eyes. In the first panel the cat says, โ€œHuman, maybe it is not about getting everything we want.โ€ In the second panel: โ€œMaybe it is about learning what is worth wanting.โ€ In the third panel the cat continues, โ€œIโ€™ve discovered that good naps, calm days and the company of my favorite humans are already very good things to want.โ€ In the final panel the cat smiles and adds, โ€œAnd snacks!โ€

Four-panel comic on a teal background featuring a fluffy black cat with sleepy eyes. In the first panel the cat says, โ€œHuman, maybe it is not about getting everything we want.โ€ In the second panel: โ€œMaybe it is about learning what is worth wanting.โ€ In the third panel the cat continues, โ€œIโ€™ve discovered that good naps, calm days and the company of my favorite humans are already very good things to want.โ€ In the final panel the cat smiles and adds, โ€œAnd snacks!โ€

12.03.2026 15:02 ๐Ÿ‘ 581 ๐Ÿ” 140 ๐Ÿ’ฌ 5 ๐Ÿ“Œ 8

Best of luck to Lee for Saturday. ๐Ÿ‘

Background information on why Lee is so passionate here:
www.awalkforme.com

I've just donated to his fundraiser here
www.idonate.ie/fundraiser/L...

12.03.2026 21:18 ๐Ÿ‘ 12 ๐Ÿ” 7 ๐Ÿ’ฌ 0 ๐Ÿ“Œ 0

Anytime, I love your art.

12.03.2026 07:10 ๐Ÿ‘ 2 ๐Ÿ” 0 ๐Ÿ’ฌ 0 ๐Ÿ“Œ 0

Another beauty!

11.03.2026 16:05 ๐Ÿ‘ 1 ๐Ÿ” 0 ๐Ÿ’ฌ 1 ๐Ÿ“Œ 0
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And the first giveaway prize of 2026 is Caer for @caerbear.bsky.social ! Congratulations.

Stay tuned, next round coming soon.

#warcraft #warcraftart #draenei #vector #illustration #giveawayprize #giveaway #fantasy

11.03.2026 15:59 ๐Ÿ‘ 38 ๐Ÿ” 13 ๐Ÿ’ฌ 3 ๐Ÿ“Œ 0

Miyamoto Musashi (hope I spelled it right)

10.03.2026 07:06 ๐Ÿ‘ 2 ๐Ÿ” 0 ๐Ÿ’ฌ 0 ๐Ÿ“Œ 0

Yeah, almost beat another infection! Well, almost...

09.03.2026 12:54 ๐Ÿ‘ 0 ๐Ÿ” 0 ๐Ÿ’ฌ 0 ๐Ÿ“Œ 0
Preview
Who receives a diagnostic label for fibromyalgia, chronic fatigue syndrome, and irritable bowel syndrome? A study in the lifelines cohort Functional Somatic Syndrome (FSS) is characterized by persistent bothersome symptoms not fully explained by known medical abnormalities. FSS includes โ€ฆ

Large Dutch study
Who receives a diagnostic label for #fibromyalgia, #chronicfatiguesyndrome, & #IrritableBowelSyndrome?
www.sciencedirect.com/science/arti...

Only 25% with FM,14% with #CFS [Fukuda],& 48% with IBS received a formal diagnosis

I need to read full paper to check their interpretations

02.03.2026 14:45 ๐Ÿ‘ 5 ๐Ÿ” 3 ๐Ÿ’ฌ 1 ๐Ÿ“Œ 0

I am sure you will get this. Sometimes it just takes time to process things. Best wishes to you.

01.03.2026 10:39 ๐Ÿ‘ 1 ๐Ÿ” 0 ๐Ÿ’ฌ 1 ๐Ÿ“Œ 0
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To Slay the Great Regurgitator

01.03.2026 04:16 ๐Ÿ‘ 8196 ๐Ÿ” 2850 ๐Ÿ’ฌ 68 ๐Ÿ“Œ 17
The Quiet Art of Extending a Life
Notes on Assistive Tools, Capacity, and the Dignity of Support
Abby
Dec 08, 2025

Iโ€™ve been thinking about how we talk about tools. Not the glamorous ones. Not the sleek productivity gadgets or the little conveniences that show up in TikTok hauls with crisp lighting and a soft keyboard soundtrack. I mean the other things. The everyday objects that help a person move, bathe, reach, carry, listen, exist. The devices people hide in closets or delay buying or apologize for needing. And how strange is it that something as simple as a piece of aluminum with wheels can hold so much cultural weight? Itโ€™s almost comical, except it isnโ€™t funny at all.

Maybe itโ€™s the therapist in me, or maybe itโ€™s just being around enough real bodies in real worlds, but Iโ€™ve come to believe we misunderstand these objects completely. Weโ€™ve wrapped them in the wrong story. And the story matters, because stories become the container we place our lives inside.

The story weโ€™ve inherited, often without noticing, is about โ€œpushing throughโ€ and โ€œmaking do.โ€ Itโ€™s a story that whispers (sometimes shouts) that the harder route is the morally superior one. I donโ€™t buy it. Because hereโ€™s the thing: assistive devices, adaptive equipment, whatever term you prefer, theyโ€™re not evidence of decline. Theyโ€™re evidence of a body trying, and of a person choosing to keep living on their own terms.

The Quiet Art of Extending a Life Notes on Assistive Tools, Capacity, and the Dignity of Support Abby Dec 08, 2025 Iโ€™ve been thinking about how we talk about tools. Not the glamorous ones. Not the sleek productivity gadgets or the little conveniences that show up in TikTok hauls with crisp lighting and a soft keyboard soundtrack. I mean the other things. The everyday objects that help a person move, bathe, reach, carry, listen, exist. The devices people hide in closets or delay buying or apologize for needing. And how strange is it that something as simple as a piece of aluminum with wheels can hold so much cultural weight? Itโ€™s almost comical, except it isnโ€™t funny at all. Maybe itโ€™s the therapist in me, or maybe itโ€™s just being around enough real bodies in real worlds, but Iโ€™ve come to believe we misunderstand these objects completely. Weโ€™ve wrapped them in the wrong story. And the story matters, because stories become the container we place our lives inside. The story weโ€™ve inherited, often without noticing, is about โ€œpushing throughโ€ and โ€œmaking do.โ€ Itโ€™s a story that whispers (sometimes shouts) that the harder route is the morally superior one. I donโ€™t buy it. Because hereโ€™s the thing: assistive devices, adaptive equipment, whatever term you prefer, theyโ€™re not evidence of decline. Theyโ€™re evidence of a body trying, and of a person choosing to keep living on their own terms.

๐Ÿงต
"The Quiet Art of Extending a Life: Notes on Assistive Tools, Capacity, and the Dignity of Support"

onelifelivedwell.substack.com/p/the-quiet-...

Another thoughtful post from this OT who specialises in ME/CFS & long Covid

She calls such devices "capacity extenders"

#chronicillness #Spoonie

1/

28.02.2026 22:03 ๐Ÿ‘ 16 ๐Ÿ” 5 ๐Ÿ’ฌ 2 ๐Ÿ“Œ 1

"Rather than holding onto the idea that the only life worth living is one without disease, consider expanding your definition of hope to include connection, purpose, and meaning under any circumstances"

From:
Recap: Coping with Depression & Emotional Overload
batemanhornecenter.org/wp-content/u...

28.02.2026 22:38 ๐Ÿ‘ 24 ๐Ÿ” 6 ๐Ÿ’ฌ 1 ๐Ÿ“Œ 0
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#caturday #artonbluesky #snackcat It seems people really like my snack cats. I got a bunch of ideas that I should try, so I will. The next few caturdays will be full of snacks. This one is inspired by our cat, Kasi, because when she was a wee little kitten she looked a bit like a beagle boy.

28.02.2026 11:35 ๐Ÿ‘ 2 ๐Ÿ” 0 ๐Ÿ’ฌ 0 ๐Ÿ“Œ 0
Long COVID, ME/CFS, and other post-infectious diseases pose new questions for medicine and society. With the long-term data from the NAKO Health Study, Germany now aims to systematically clarify why some infections leave lasting effects and how those affected can be better supported.

Post-infectious diseases are on the rise. Infections such as COVID-19 can lead to chronic conditions such as Long COVID or ME/CFS months or even years later, affecting hundreds of thousands of people in Germany.
As part of the National Decade Against Post-Infectious Diseases, the Federal Ministry of Research, Technology, and Space (BMFTR) is investing approximately 500 million euros over the next decade to systematically research causes, disease mechanisms, diagnostics, and therapies and to improve care.
The NAKO Health Study, with 200,000 participants, provides crucial long-term data and enables a rare before-and-after comparison with data and biosamples from before, during, and after infection.
The aim of research is to determine the actual prevalence of post-infectious diseases more accurately, to better understand the underlying biological processes, and to effectively support those affected through targeted interventions in the future.

Long COVID, ME/CFS, and other post-infectious diseases pose new questions for medicine and society. With the long-term data from the NAKO Health Study, Germany now aims to systematically clarify why some infections leave lasting effects and how those affected can be better supported. Post-infectious diseases are on the rise. Infections such as COVID-19 can lead to chronic conditions such as Long COVID or ME/CFS months or even years later, affecting hundreds of thousands of people in Germany. As part of the National Decade Against Post-Infectious Diseases, the Federal Ministry of Research, Technology, and Space (BMFTR) is investing approximately 500 million euros over the next decade to systematically research causes, disease mechanisms, diagnostics, and therapies and to improve care. The NAKO Health Study, with 200,000 participants, provides crucial long-term data and enables a rare before-and-after comparison with data and biosamples from before, during, and after infection. The aim of research is to determine the actual prevalence of post-infectious diseases more accurately, to better understand the underlying biological processes, and to effectively support those affected through targeted interventions in the future.

Exciting to read about some of the expensive ME/CFS & long Covid research planned in Germany (using some ofโ‚ฌ500 million budget) including that using long-term samples which allow comparisons of samples before and after developing the conditions

www.helmholtz.de/en/newsroom/...

#LongCovid #MEcfs

27.02.2026 16:57 ๐Ÿ‘ 31 ๐Ÿ” 14 ๐Ÿ’ฌ 1 ๐Ÿ“Œ 0

Speakers include Christopher Armstrong, Chris Ponting @cgatist.bsky.social , Oystein Fluge, David Putrino @putrinolab.bsky.social , Carmen Scheibenbogen @scheibenbogen.bsky.social , and many other ME/CFS experts.
#MEcfs #LongCovid

25.02.2026 18:09 ๐Ÿ‘ 25 ๐Ÿ” 15 ๐Ÿ’ฌ 0 ๐Ÿ“Œ 0

Included are details of discussions on the DHSC Delivery Plan, Research Case Definition for ME/CFS, the Danny Altmann Rosetta Stone study, the Jackie Cliff HHV-6 and Electrophysiology studies as well as Carolineโ€™s Retirement Plans.
#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

25.02.2026 01:38 ๐Ÿ‘ 7 ๐Ÿ” 4 ๐Ÿ’ฌ 0 ๐Ÿ“Œ 0
UK MEA announce funding for study into biological markers in ME/CFS and Long Covid
Based at the UK Dementia Research Instituteโ€™s Fluid Biomarker Laboratory at UCL the 12-month research project will analyse proteins linked to the immune system and the brain in people with ME/CFS and Long Covid. It will use samples from the UK ME/CFS Biobank and the UCLH STIMULATE ICP Long Covid study and compare them to healthy controls.
โ€œThe project will use ALAMAR Bioscienceโ€™s NULISA platform, a next generation technology with extremely high sensitivity. It can detect more than 300 proteins involved in immune function and central nervous system processes โ€” including many that cannot be measured using standard immunoassaysโ€
Website | PDF | Thread

UK MEA announce funding for study into biological markers in ME/CFS and Long Covid Based at the UK Dementia Research Instituteโ€™s Fluid Biomarker Laboratory at UCL the 12-month research project will analyse proteins linked to the immune system and the brain in people with ME/CFS and Long Covid. It will use samples from the UK ME/CFS Biobank and the UCLH STIMULATE ICP Long Covid study and compare them to healthy controls. โ€œThe project will use ALAMAR Bioscienceโ€™s NULISA platform, a next generation technology with extremely high sensitivity. It can detect more than 300 proteins involved in immune function and central nervous system processes โ€” including many that cannot be measured using standard immunoassaysโ€ Website | PDF | Thread

MEA announce funding for study into biological markers in ME/CFS and Long Covid

meassociation.org.uk/2026/02/new-...

meassociation.org.uk/wp-content/u...

Screenshot from latest Science for ME weekly update

#LongCovid #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

25.02.2026 01:46 ๐Ÿ‘ 11 ๐Ÿ” 3 ๐Ÿ’ฌ 0 ๐Ÿ“Œ 0
artist's impression of life: with 5 sections: before ME; mild ME; moderate ME; severe ME; very severe ME

artist's impression of life: with 5 sections: before ME; mild ME; moderate ME; severe ME; very severe ME

M.E.: "How it can shrink one's world, bit by bit" by Kornelia Paulsen (who no longer appears to be on X or IG).

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #SevereME

23.02.2026 22:48 ๐Ÿ‘ 91 ๐Ÿ” 41 ๐Ÿ’ฌ 1 ๐Ÿ“Œ 2

You, too!

23.02.2026 12:02 ๐Ÿ‘ 1 ๐Ÿ” 0 ๐Ÿ’ฌ 0 ๐Ÿ“Œ 0
Austria
The Long Covid outpatient clinic planned at the psychiatric department of Vienna General Hospital will not be approved, the hospital announced. There has been strong criticism from experts of the proposed treatment concept, which was seen as equating Long Covid too closely with depression.

Austria The Long Covid outpatient clinic planned at the psychiatric department of Vienna General Hospital will not be approved, the hospital announced. There has been strong criticism from experts of the proposed treatment concept, which was seen as equating Long Covid too closely with depression.

The Long Covid outpatient clinic planned at the psychiatric department of Vienna General Hospital will not be approved

Google English translation
wien-orf-at.translate.goog/stories/3342...

wien.orf.at/stories/3342...

Screenshot from latest Science for ME weekly update

#LongCovid #NeuroPASC

23.02.2026 02:06 ๐Ÿ‘ 14 ๐Ÿ” 6 ๐Ÿ’ฌ 1 ๐Ÿ“Œ 2

More power to you and best wishes, my dear. ๐Ÿ’œ

22.02.2026 09:23 ๐Ÿ‘ 1 ๐Ÿ” 0 ๐Ÿ’ฌ 1 ๐Ÿ“Œ 0

Relationships are the most precious thing... and I guess that game is very much "no risk, no gain". The thing I am most happy about is, that it did not spoil relationships for me forever, I didn't get bitter. You don't seem to, either, so another plus. This way it is easy to be grateful.

22.02.2026 07:15 ๐Ÿ‘ 2 ๐Ÿ” 0 ๐Ÿ’ฌ 1 ๐Ÿ“Œ 0
Press Release from Fibro Winnipeg
Winnipeg & Montrรฉal โ€” January 2026
The Fibromyalgia Support Group of Winnipeg is proud to announce a $40,000 investment over one year to support a new fibromyalgia research project led by Dr. Alain Moreau, Professor at the Universitรฉ de Montrรฉal (Faculty of Dentistry and Faculty of Medicine) and Researcher at the Azrieli Research Center, CHU Sainte-Justine.
This funding supports a focused research effort to better understand why people living with fibromyalgia experience severe pain, fatigue, and symptom crashes after even mild physical or emotional effortโ€”one of the most disabling and least understood aspects of the condition.
Why This Research Matters to Patients
Many people with fibromyalgia feel as if their body reacts too strongly to everyday activities. Simple tasks like walking, concentrating, or dealing with stress can trigger days of increased pain, exhaustion, and brain fog. Yet routine medical tests often show nothing abnormal, leaving patients without clear answers.
This research aims to identify a measurable biological process in the blood that may act like a pain amplifier, turning small stresses into major symptom flares. By understanding this mechanism, the study could:
โ€ข Help validate fibromyalgia as a real, biological illness
โ€ข Lead to objective blood tests that explain post-exertional symptom worsening
โ€ข Open the door to new treatment options, including medications that already exist but have never been tested for fibromyalgia
For patients, this means replacing doubt with understanding - and symptoms with explanations.
Patients as True Partners
Members of the Fibromyalgia Support Group of
Winnipeg will be actively involved in the project, participating in regular progress meetings and helping guide communication of results. This partnership ensures the research stays aligned with the real needs and priorities of people living with fibromyalgia.
A Strong Commitment to Progress
By investing $40,000 over one year, thโ€ฆ

Press Release from Fibro Winnipeg Winnipeg & Montrรฉal โ€” January 2026 The Fibromyalgia Support Group of Winnipeg is proud to announce a $40,000 investment over one year to support a new fibromyalgia research project led by Dr. Alain Moreau, Professor at the Universitรฉ de Montrรฉal (Faculty of Dentistry and Faculty of Medicine) and Researcher at the Azrieli Research Center, CHU Sainte-Justine. This funding supports a focused research effort to better understand why people living with fibromyalgia experience severe pain, fatigue, and symptom crashes after even mild physical or emotional effortโ€”one of the most disabling and least understood aspects of the condition. Why This Research Matters to Patients Many people with fibromyalgia feel as if their body reacts too strongly to everyday activities. Simple tasks like walking, concentrating, or dealing with stress can trigger days of increased pain, exhaustion, and brain fog. Yet routine medical tests often show nothing abnormal, leaving patients without clear answers. This research aims to identify a measurable biological process in the blood that may act like a pain amplifier, turning small stresses into major symptom flares. By understanding this mechanism, the study could: โ€ข Help validate fibromyalgia as a real, biological illness โ€ข Lead to objective blood tests that explain post-exertional symptom worsening โ€ข Open the door to new treatment options, including medications that already exist but have never been tested for fibromyalgia For patients, this means replacing doubt with understanding - and symptoms with explanations. Patients as True Partners Members of the Fibromyalgia Support Group of Winnipeg will be actively involved in the project, participating in regular progress meetings and helping guide communication of results. This partnership ensures the research stays aligned with the real needs and priorities of people living with fibromyalgia. A Strong Commitment to Progress By investing $40,000 over one year, thโ€ฆ

Well done to the Fibromyalgia Support Group of Winnipeg for its donation of $40,000 to new research project led by Dr Alain Moreau ๐Ÿ‘

Would be great to see more money being raised privately for fibromyalgia research

fmswinnipeg.com/events-fundr...

#Fibromyalgia #Fibro #FMS #FM

21.02.2026 21:23 ๐Ÿ‘ 19 ๐Ÿ” 6 ๐Ÿ’ฌ 2 ๐Ÿ“Œ 0
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If you can catch dawn at low tide, it's a truly magical experience - all big sky and endless reflections. It feels like you're walking on clouds. Here's one of the shots I've taken recently at West Shore #Llandudno #photograph #landscapephotography

21.02.2026 09:04 ๐Ÿ‘ 2930 ๐Ÿ” 280 ๐Ÿ’ฌ 70 ๐Ÿ“Œ 15

I came down with ME/CFS in the wake of the pandemic. As a High Schooler I spend a year in Canada (Nova Scotia). I would love to see the world, but I am confined to my bedroom (well, it does have a nice view, I am lucky), still, thank you for being a window to more places, even if I can't go myself.

21.02.2026 12:04 ๐Ÿ‘ 1 ๐Ÿ” 0 ๐Ÿ’ฌ 0 ๐Ÿ“Œ 0
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#Caturday #cat #artonbluesky So, going for something drawn this caturday. It was inspired by something that happend... the cat was okay. The popcorn was, too. Mostly.

21.02.2026 10:12 ๐Ÿ‘ 4 ๐Ÿ” 0 ๐Ÿ’ฌ 0 ๐Ÿ“Œ 0
Multimodal imaging suggests potential immune-vascular contributions to altered regional brain perfusion and oxygen metabolism in Post-COVID-19 Syndrome โ€” Martins et al.
"this study demonstrates that PCS is associated with regionally specific alterations in cerebral perfusion and oxygen metabolism. These findings support a dual process model in which hippocampal hypermetabolism seems to reflect compensatory adaptation, while ACC neurovascular uncoupling might derive from neuroimmune disruption." "findings identify the ACC as a metabolically vulnerable hub in PCS"

Multimodal imaging suggests potential immune-vascular contributions to altered regional brain perfusion and oxygen metabolism in Post-COVID-19 Syndrome โ€” Martins et al. "this study demonstrates that PCS is associated with regionally specific alterations in cerebral perfusion and oxygen metabolism. These findings support a dual process model in which hippocampal hypermetabolism seems to reflect compensatory adaptation, while ACC neurovascular uncoupling might derive from neuroimmune disruption." "findings identify the ACC as a metabolically vulnerable hub in PCS"

From ๐Ÿ‡ฌ๐Ÿ‡ง

Multimodal imaging suggests potential immune-vascular contributions to altered regional brain perfusion and oxygen metabolism in Post-COVID-19 Syndrome

www.sciencedirect.com/science/arti...

Screenshot from latest Science for ME weekly update

#LongCovid #NeuroPASC #COVIDBrain #postcovid19

21.02.2026 01:49 ๐Ÿ‘ 11 ๐Ÿ” 8 ๐Ÿ’ฌ 0 ๐Ÿ“Œ 0