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fishupahill.bsky.social
Fishupahill
@fishupahill.bsky.social
58 followers 140 following 67 posts
Formerly many things. Now missing, but not gone.
#pwME, #pwLC and #Lyme.
Posts Replies Media Videos
Reposted by Fishupahill
tomkindlon.bsky.social
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 • 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.
January 1, 2026 at 1:19 PM
fishupahill.bsky.social
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
Can you spare a minute to help this campaign?
Save The Iain Anderson Show – Reverse the BBC Radio Scotland decision
c.org
December 11, 2025 at 5:06 PM
Reposted by Fishupahill
maryeilmicdom.bsky.social
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
October 24, 2025 at 5:09 PM
Reposted by Fishupahill
astroroyalscot.bsky.social
🔊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...
October 20, 2025 at 3:52 PM
Reposted by Fishupahill
dbkell.bsky.social
Assessing the Health and Functionality of the Microcirculation Using Thermal Imaging. Preprint with @resiapretorius www.preprints.org/manuscript/2... #preprints via @Preprints_org #TeamClots
www.preprints.org
October 17, 2025 at 9:27 AM
Reposted by Fishupahill
meownersclub.bsky.social
#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
October 10, 2025 at 9:38 AM
Reposted by Fishupahill
georgemonbiot.bsky.social
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...
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...
www.benefitsandwork.co.uk
October 8, 2025 at 6:09 AM
Reposted by Fishupahill
georgemonbiot.bsky.social
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...
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
www.theguardian.com
October 8, 2025 at 6:09 AM
fishupahill.bsky.social
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"
October 4, 2025 at 9:47 AM
Reposted by Fishupahill
ph-ph-ph.bsky.social
‘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...
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...
www.cell.com
October 1, 2025 at 2:16 PM
Reposted by Fishupahill
tomkindlon.bsky.social
“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/
September 27, 2025 at 5:01 PM
Reposted by Fishupahill
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 Fishupahill
murtoz.bsky.social
Final day and it's over 10k now!

justice4me.uk
September 27, 2025 at 1:42 PM
Reposted by Fishupahill
invalid-handle.com
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
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...
journals.sagepub.com
September 24, 2025 at 7:46 AM
Reposted by Fishupahill
meownersclub.bsky.social
#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
September 23, 2025 at 6:50 AM
Reposted by Fishupahill
mecentraal.bsky.social
People are dying from ME without a specialist service, please support this important campaign! #Justice4ME
September 19, 2025 at 12:00 PM
Reposted by Fishupahill
helephant.bsky.social
👉 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
ris-law.bsky.social Rook Irwin Sweeney @ris-law.bsky.social · Sep 1
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.
September 20, 2025 at 9:42 AM
Reposted by Fishupahill
stevefifield.bsky.social
🔥♥️ 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
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.
Justice4ME.uk
September 18, 2025 at 11:58 PM
Reposted by Fishupahill
valebodi.bsky.social
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
europeanmealliance.bsky.social European ME Alliance @europeanmealliance.bsky.social · Sep 10
#WorldSuicidePreventionDay
Changing the Narrative on Suicide
Healthcare professionals play key role in suicide prevention for people with #MECFS
Yet risk signs are missed
Recognition, referral, stigma reduction can save lives
www.europeanmealliance.org/news-Q32025-...
#EUHealth 3/3
September 10, 2025 at 6:47 PM
fishupahill.bsky.social
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.
September 10, 2025 at 1:26 PM
Reposted by Fishupahill
swastrosarah.bsky.social
#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.
September 9, 2025 at 11:26 AM
Reposted by Fishupahill
swastrosarah.bsky.social
#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?
September 8, 2025 at 5:29 AM
Reposted by Fishupahill
ris-law.bsky.social
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.
September 1, 2025 at 11:17 AM
Reposted by Fishupahill
valebodi.bsky.social
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
August 31, 2025 at 12:45 PM
Reposted by Fishupahill
swastrosarah.bsky.social
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
www.crowdjustice.com
August 29, 2025 at 6:05 PM