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Fishupahill

@fishupahill.bsky.social
78 followers 150 following 255 posts

Formerly many things. Now missing, but not gone. #pwME, #pwLC and #Lyme.

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Fishupahill @fishupahill.bsky.social · 23/06/2026
Can anyone tell me whether the Oura Ring 4 measures and allows access to raw HRV data measured in ms?
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Susie Dent @susiedentwords.bsky.social · 18/06/2026
I’ve just launched a Substack for anyone who fancies being part of a word community. My first free post is out now. susiedent.substack.com/publish/post...
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Fishupahill @fishupahill.bsky.social · 16/06/2026
#Lyme Can anyone recommend a good Lyme / tick borne infection doctor in the UK?
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Fishupahill @fishupahill.bsky.social · 11/06/2026
#lyme, tick borne infections, UK. I reported 30+ tick bites annually for years to GP, with several already this year - all with significant reactions. Told: nothing available, try cetirizine to quell reactions and if I learn of anything else to report back as ticks are an increasing problem. Sigh.
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Merrydholl @maryeilmicdom.bsky.social · 06/06/2026
merrydholl.wordpress.com/2026/06/06/t... A few words I've penned to mark the 20th anniversary of being a #pwME #MECFS #NEISVOID #MYALGICENCEPHALOMYELITIS #CHRONICILLNESS #DISABILITY
merrydholl.wordpress.com
Twenty Years
I ascribe the onset of my illness to events on 6th June 2006. In truth, it had probably been bubbling up for longer. Nevertheless, today is my chosen anniversary – the 20th one.In our culture…
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Merrydholl @maryeilmicdom.bsky.social · 11/05/2026
Finally holding a copy of our book; the fruit of so much effort. Fitting somehow that it has been delivered on a day I'm unable to make it out of bed, having expended a lot of energy (happily) yesterday. Please buy and share! @pillowwriters.bsky.social Day 11 of #MEAwarenessMonth #MECFS #MedSky
A woman holding a book: What is Myalgic Encephalomyelitis Like? Patient and Caregiver Perspectives.
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Sarah @no1sarah.bsky.social · 24/04/2026
open.substack.com/pub/likeanno...
open.substack.com
Why a Patient Made the Two-Day CPET
How a patient used the scientific process and tools of her discipline to understand her own reality, starting to answer questions no one else had thought to ask.
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Fishupahill @fishupahill.bsky.social · 16/04/2026
In a tiny bit of good news, the Iain Anderson radio show is returning to the air on Sunday 19th April 2026 under their own steam. Hooray. It's a haven. iainandersonradio.online
iainandersonradio.online
About - Iain Anderson - Back on Board
Scottish Music Insights Discover the Heart of Scottish Broadcasting Join Iain Anderson as he takes you on a journey through the rich tapestry of Scottish music and culture. Tune in for engaging discus...
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Fishupahill @fishupahill.bsky.social · 21/03/2026
@crypticblah.bsky.social I've lost my crossword guru and seek wisdom. Everyman 3051 (old), 22D Distinctive smell round the same ancient city (5) Answer: odour, definition distinctive smell. round the same = odo. I can't see why. odo is symmetrical, o is round. I'm puzzled. Ancient city=Ur.
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valebodi.bsky.social @valebodi.bsky.social · 02/03/2026
New & important preprint paper: Search of Lost Volume: The Potential Causes of Hypovolemia in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Klaus J. Wirth #ME/CFS #pwME #Hypovolemia #Vasopressin
preprints.org
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Physios For ME @physiosforme.bsky.social · 05/02/2026
New Survey now out: experiences of people with ME and Long Covid with hyperbaric oxygen / oxygen therapy. Please share widely. For all the info and survey link, head on over to www.physiosforme.com/o2survey
physiosforme.com
02 Chamber survey | Physiosforme
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Tom Kindlon @tomkindlon.bsky.social · 01/01/2026
Interesting new research from Sweden: Low Vasopressin In Myalgic Encephalomyelitis/Chronic Fatigue Syndrome www.endocrinepractice.org/article/S153... Vasopressin or antidiuretic hormone helps the body hold on to fluid #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
orthostatic intolerance and polyuria-polydipsia typify disabling forms of ME/CFS
•	
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
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chronic down-regulation of vasopressin mimicking central diabetes insipidus may contribute to the core symptoms of ME/CFS
ABSTRACT
Objective
The complex clinical picture of ME/CFS includes orthostatic intolerance with symptoms and signs suggesting abnormal water homeostasis and hypovolemia. Since many ME/CFS patients report polyuria-polydipsia, we conducted an observational study based on series of plasma and urine osmolality (P-Osm and U-Osm) as well as plasma levels of vasopressin (P-VP) or copeptin in consecutive patients diagnosed with ME/CFS according to the International Consensus Criteria.
Methods
P-VP as well as P-Osm and U-Osm were measured in 111 patients after 10 hour overnight fasting and fluid deprivation. Additional 13 patients were assessed for copeptin, when P-VP measurements were no longer available. The clinical routine also included brain MRI and blood chemistry.
Results
P-Osm was abnormally high (>292 mOsm/kg) in 71/124 (57.3 %) and U-Osm below the reference interval (< 750 mOsm/kg) in 82/124 (66.1%) patients. P-VP was below the level of detection (<1.6 pg/mL) in 91/111 (82.0 %) patients. A normal P-VP level compared with their P-Osm was found in 11/111 (9.9 %) patients. Copeptin levels were all within the given reference range, albeit in the lower end in most patients. No indication of relevant pathology in either hypothalamus or hypophysis was present.
Conclusions
Our findings suggest that chronic down-regulation of VP mimicking central diabetes insipidus is an important measurable part of the disease mechanism that potentially contributes to criterial symptoms of ME/CFS.
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Fishupahill @fishupahill.bsky.social · 11/12/2025
I've always treasured the Iain Anderson show on #BBCRadioScot. It's a diamond in the dust and I'd be lost without it. The show has been unceremoniously axed and, yet, it single handedly justifies the licence fee. There's a petition: c.org/FSRvZYVygR
c.org
Can you spare a minute to help this campaign?
Save The Iain Anderson Show – Reverse the BBC Radio Scotland decision
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Merrydholl @maryeilmicdom.bsky.social · 24/10/2025
As if I couldn't love #MarkBonnar any more, here he is giving voice to our experiences. Do listen, even if it's just to hear him speak. #DeptQ #Traitors #CelebrityTraitors #MECFS #pwME
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Astronomer Royal for Scotland | Catherine Heymans @astroroyalscot.bsky.social · 20/10/2025
🔊Announcing a new Physics/Astro PhD scholarship scheme in Edinburgh, for students from a Black heritage, inc mixed Black background. Please help me spread the word. The scholarship covers all tuition fees, living costs & research travel. #blackinSTEM 🔭👩‍🔬⚛️ ℹ️: www.ph.ed.ac.uk/studying/pos...
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Douglas Kell @dbkell.bsky.social · 17/10/2025
Assessing the Health and Functionality of the Microcirculation Using Thermal Imaging. Preprint with @resiapretorius www.preprints.org/manuscript/2... #preprints via @Preprints_org #TeamClots
preprints.org
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Eleanor Fielding @meownersclub.bsky.social · 10/10/2025
#ME #Disability #Psychiatry #Biopsychosocial @meassociation.org.uk @longcovidsupport.bsky.social @thelancet.com @nhsengland.bsky.social @georgemonbiot.bsky.social @profstevegriffin.bsky.social @davidjoffe64.bsky.social @drjoepajak.bsky.social
Title - This Week in Disbelief..

This is a cartoon in 3 vertical sections - 
 
Section 1 title - "The Most Hated Doctor in Britain" has been appointed by a Labour government as vice-chair of an investigation into whether mental health problems and neurodivergence are being
OVERDIAGNOSED.

Section 2 title - Prof Simon Wessely, the careerist punitive psychiatrist whose views on #MEcfs have led to decades of underfunding, medical ignorance.
unnecessary disability and definitely preventable deaths. seems wedded to these powerful persecutory roles.

Section 3 title - How can we understand this commitment to coercion from a doctor?
Does he perhaps:
• Crave recognition from powerful groups?
• Struggle with unresolved trauma?
• Chase career and social gains?
• Lack self-awareness & empathy?
• Think the ends justify the means?

In the bottom right hand corner is wise Cat who’s saying “Or perhaps he's just a dick?!”

The cartoon maker is #FanningTheFlames
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George Monbiot @georgemonbiot.bsky.social · 08/10/2025
Just as we are beginning to understand the biochemical basis of this horrendous condition, the government appoints the man perhaps most responsible for the mischaracterisation of ME/CFS – Simon Wesseley - to its *overdiagnosis* commission. www.benefitsandwork.co.uk/news/controv...
benefitsandwork.co.uk
Controversial professor to investigate overdiagnosis of mental health and neurodivergence for Labour
Get the benefits you're entitled to: help with personal independence payment (PIP), universal credit (UC), employment and support allowance (ESA),disability living allowance (DLA). Claims, assessments...
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George Monbiot @georgemonbiot.bsky.social · 08/10/2025
ME/CFS is a devastating condition that has long been denied, dismissed, psychologised and underdiagnosed. Research is at last starting to catch up with it, with glimmers of hope for those who have been left untreated for so long. There's a huge BUT coming ...🧵 www.theguardian.com/society/2025...
theguardian.com
Scientists develop first ‘accurate blood test’ to detect chronic fatigue syndrome
Research could offer hope for ME patients – but some experts urge caution and say more studies needed
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Fishupahill @fishupahill.bsky.social · 04/10/2025
Garner, Pedersen, Miller stay true to their cause in a Guardian letter response to the recent #Lyme article. As unscientific and unhelpful as ever.
Denial that chronic Borelia and denial that proven long term antibiotic treatment is effective. BPS nonsense.

"Unfortunately, it seems that Milly’s mind-body approach was implemented in a suboptimal way. This led her to feel responsible for her symptoms, rather than understand that they arise from the body’s natural responses. Such feelings of guilt can hinder recovery, and should have been carefully addressed"
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PH 🕊️🌱😷 @ph-ph-ph.bsky.social · 01/10/2025
‘We analyze the gut microbiome, motor behavior, & gastrointestinal & brain pathologies. We find that diet & bacterial curli alter the microbiome & exacerbate motor performance, as well as intestinal & brain pathologies, but to different extents..’ www.cell.com/cell-reports...
cell.com
Fiber deprivation and microbiome-borne curli shift gut bacterial populations and accelerate disease in a mouse model of Parkinson’s disease
Schmit et al. investigate how dietary fiber deprivation in combination with a bacterial toxin affect PD progression. They point to a translational PD-relevant sequence of events exacerbating disease p...
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Tom Kindlon @tomkindlon.bsky.social · 27/09/2025
“Placebo was considered more effective for functional than non-functional disorders by healthcare professionals, but not by patients” Interesting. Gives information on how professionals view functional disorders. I believe a FND diagnosis => Find New Doctor 1/
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emily fraser 🌿🐌✨ @emilyesfraser.bsky.social · 27/09/2025
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” 🙏
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Michiel @murtoz.bsky.social · 27/09/2025
Final day and it's over 10k now! justice4me.uk
justice4me.uk
NHS care for ME now
Campaigning for ME (Myalgic Encephalomyelitis) to be medically managed safely, to protect families from permanent disability or death from neglect of the illness.
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Hotblack @invalid-handle.com · 24/09/2025
A lot of rightful anger at the harmful anti science happening in the US. But what if I told you there were similar flaws at the heart of the UK and NHS? A flawed study called the PACE trial was conducted on people with ME/CFS in 2010 and the results guide many in the NHS to this day
journals.sagepub.com
Special issue on the PACE Trial - David F Marks, 2017
We are proud that this issue marks a special contribution by the Journal of Health Psychology to the literature concerning interventions to manage adaptation to...
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Eleanor Fielding @meownersclub.bsky.social · 23/09/2025
#ME #Disability #Psychiatry #Biopsychosocial @meassociation.org.uk @longcovidsupport.bsky.social @thelancet.com @nhsengland.bsky.social @georgemonbiot.bsky.social @profstevegriffin.bsky.social @davidjoffe64.bsky.social @drjoepajak.bsky.social
Title - EMINENCE-BASED MEDICINE

This is a cartoon in 3 boxes

In box one someone is giving a lecture to a group of interested people. They’re saying “We've identified some illnesses with NO diagnostic markers or treatments...”

In box two the lecturer is saying 
“..so we're annexing them for psychological + psychiatric research”

In box three a member of the audience is asking “What about the 9000+ papers in
2025* which show these are organic illnesses?”

The lecturer is replying “You really haven't understood the purpose of EMINENCE-BASED medicine have you?”

*cf Google Scholar

The cartoon maker is #FanningTheFlames
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ME Centraal @mecentraal.bsky.social · 19/09/2025
People are dying from ME without a specialist service, please support this important campaign! #Justice4ME
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helephant @helephant.bsky.social · 20/09/2025
👉 Please share & donate if you can! Help crowdfund a legal case against the UK government for neglect of ME/cfs - only 8 days to go ✊ #MEcfs #LongCovid #JusticeforME
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Steve Fifield @stevefifield.bsky.social · 19/09/2025
🔥♥️ Please help share the campaign. A specialist NHS service for everyone living with ME, including family carers, regardless of the severity or duration of the illness. Help nudge the total a tiny bit. Every little helps. Can we help reach £9K by Sun evening? 🙏 ➡️ Justice4ME.uk ⬅️ #pwME #Justice4ME
justice4me.uk
NHS care for ME now
Campaigning for ME (Myalgic Encephalomyelitis) to be medically managed safely, to protect families from permanent disability or death from neglect of the illness.
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valebodi.bsky.social @valebodi.bsky.social · 10/09/2025
The brutal & dangerous reality is that #pwME have almost no chance of being referred to knowledgeable therapists, no matter where they live, around the world. Seeking support and care, still come w/ the risks of being misunderstood & even sectioned 🏷️ @bettinagrande.bsky.social @molbaas.bsky.social
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Fishupahill @fishupahill.bsky.social · 10/09/2025
If anyone uses Starlink and hasn't been connected to the internet today then the problem is Starlink's own DNS servers. Switching your router to manual DNS and Cloudflare/google will restore the connection.
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sarah boothby @swastrosarah.bsky.social · 09/09/2025
#Savannah #vsME update. A good MDT which ran over to twice the length of time allocated. Dr Weir and I were both invited, spoke at length and were heard. The absence of NHS ME specialists _anywhere_ in the UK is the biggest probem for every ICB, including Lewisham and Greenwich.
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sarah boothby @swastrosarah.bsky.social · 08/09/2025
#pwME NHS module 3 is everything I feared it would be for very severe ME. Strain is not fit to author a #ME training modules. He presided over #MaeveInquest premature death, & almost killed another very severe ME px less than a year later. Why was he appointed to replace Dr Muirhead?
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Rook Irwin Sweeney @ris-law.bsky.social · 01/09/2025
Our client, supported by #JusticeforME, is crowdfunding for legal advice with the aim of ensuring that specialist health services needed by everyone living with ME/cfs are made available – find out more here: www.crowdjustice.com/case/justice... #MyalgicEncephalomyelitis @swastrosarah.bsky.social
A painting of a woman lying in a bed with a landscape of hills in the background.
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valebodi.bsky.social @valebodi.bsky.social · 31/08/2025
Recent work demonstrates that exercise exceeding the aerobic threshold causes skeletal muscle damage and necrosis in LC patients with #PEM (3). Since the aerobic threshold is pathologically lowered in this group, even minimal daily movements may induce metabolic tissue damage. Necrosis is a
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sarah boothby @swastrosarah.bsky.social · 29/08/2025
I am proud to endorse this initiative, with thanks to the very many people made unwell by medical neglect of #ME who never give up, no matter how difficult it is to continue. This fundraiser goes live 7pm BST 29 August 2025. #Justice4ME www.crowdjustice.com/case/justice... 1/2
crowdjustice.com
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Eleanor Fielding @meownersclub.bsky.social · 22/08/2025
How much evidence will ever be enough?
Two women are on a sofa talking 

The person on the left is saying “SURELTY THESE EMIENT DOCTORS DIDNT PRETEND FOR 30YEARS THAT THE BIOLOGICAL BASIS OF #ME DIDNT EXIST?”

The person on the right is saying “Shockingly they did”

The cartoon maker is #FanningTheFlames
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sarah boothby @swastrosarah.bsky.social · 26/08/2025
Happy Birthday Maeve, you should have been 31 today. Please remember her for who she was, not how she died. Feminist, Writer, Linguist. Wannabe diplomat with her Irish passport, a gift for Russian & a balanced interest in Israel/Palestine. #MEKills #PlanForME #JusticeForME #MaeveInquest
A candle flame at dusk
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Eleanor Fielding @meownersclub.bsky.social · 20/08/2025
#ME #LC #PEM #ChronicIllness #MedicalMadness Here’s a handy phrase for that next appointment which turns into a minefield, and at the end of which you’re meant to believe you’re a psycho and they’re sane.
A ring of flowers circles the words - 

“DOCTORS, Often wrong BUT never in doubt”

The cartoon maker is #FanningTheFlames
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sarah boothby @swastrosarah.bsky.social · 11/08/2025
Prusty's new pre-print is out. Please somebody apply for MRC funding to test this in a replica study. We know from observation the mitochondria are affected. This . . . could be how. #Research #ME #PlanForME www.medrxiv.org/content/10.1...
medrxiv.org
ME/CFS and PASC Patient-Derived Immunoglobulin Complexes Disrupt Mitochondrial Function and Alter Inflammatory Marker Secretion
Autoimmunity is a key clinical feature in both post-infectious Myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) and Post-Acute Sequelae of COVID (PASC). Passive transfer of immunoglobulin...
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sarah boothby @swastrosarah.bsky.social · 10/08/2025
no paywall full story full story archive.is/2025.08.09-2...
archive.is
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sarah boothby @swastrosarah.bsky.social · 10/08/2025
Thanks to Emily Dugan and the Sunday Times for exposing this aspect of how Maeve died from ME. A Devon County Council cover up. Maeve was taking them to judical review, dying in the attempt. Devon County Council may have learnt nothing from the inquest. I have learnt a lot about them. 1/4
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sarah boothby @swastrosarah.bsky.social · 09/08/2025
Looking at 7pm tonight, Saturday 9 August, LBC radio with Natasha Devon.
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maritskotheim.bsky.social @maritskotheim.bsky.social · 07/08/2025
This 👇🏻
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Tom Kindlon @tomkindlon.bsky.social · 08/08/2025
If you'd like to support the researchers behind #DecodeME with other projects eg #SequenceME www.clinicalresearchnewsonline.com/cln/pressrel..., here's donation link www.decodeme.org.uk/support-us/ Alternatively donate directly to Prof Ponting's #MECFS research donate.ed.ac.uk/support/ME-C... #CFS
Help us build on the work of DecodeME by supporting future research into ME/CFS.
Together, we can work towards a future where we understand the genetic causes of ME/CFS and can identify treatments.

All gifts will go towards furthering our understanding of the disease through collaborative research projects.

Donations will be managed by Action for ME and used towards research projects delivered in partnership with the University of Edinburgh, such as the Genetics Centre of Excellence and Sequence ME and Long Covid.

Donate here
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Tom Kindlon @tomkindlon.bsky.social · 08/08/2025
Cognitive Dysfunction in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome—Aetiology and Potential Treatments www.mdpi.com/1422-0067/26... Screenshot from AMMES July email newsletter #PwME #MEcfs #CFS
Cognitive Dysfunction in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome—Aetiology and Potential Treatments

Cognitive dysfunction in ME/CFS could result from low-grade persistent inflammation associated with raised pro-inflammatory cytokines. This may be caused by both infectious and non-infectious stimuli and lead to altered regional cerebral blood flow accompanied by disturbed neuronal function. Immune dysregulation that manifests as a subtle immunodeficiency or the autoimmunity targeting of one or more neuronal receptors may also be a contributing factor. Efforts to reduce low-grade systemic inflammation and viral reactivation and to improve mitochondrial energy generation in ME/CFS have the potential to improve cognitive dysfunction in this highly disabling condition.
Read more here>>
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sarah boothby @swastrosarah.bsky.social · 07/08/2025
"This is important, this is big actually"
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sarah boothby @swastrosarah.bsky.social · 31/07/2025
Isla's mother has been arrested under suspicion of causing her death from ME last year (heart failure). There was no inquest. Isla's younger sister (15), who also has ME, has been removed from the only people who understand how the disease must be managed. Imagine her fear. #MEKills #HumanRights
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Rene Sugar @renesugar.bsky.social · 19/06/2025
Effective management of atherosclerosis progress and hyperlipidemia with nattokinase: A clinical study with 1,062 participants #MECFS #LongCovid pubmed.ncbi.nlm.nih.gov/36072877/
pubmed.ncbi.nlm.nih.gov
Effective management of atherosclerosis progress and hyperlipidemia with nattokinase: A clinical study with 1,062 participants - PubMed
Nattokinase (NK), known as a potent fibrinolytic and antithrombotic agent, has been shown to have antiatherosclerotic and lipid-lowering effects. However, data on human clinical studies are limited. I...
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sarah boothby @swastrosarah.bsky.social · 28/12/2024
25 February 2025 ARTE 22:35 "Chronically ill; chronically ignored" 90 minutes. Featuring @sibylledahrendorf.bsky.social @doctorasadkhan.bsky.social Save the date & share to other platforms 🙏
montage of images from forthcoming feature length documentary about chronic ignorance of #ME
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