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Eleanor

@eleanoralbaugh.bsky.social
989 followers 1.1K following 5.4K posts

Crafter by necessity to stay occupied whilst dealing with health issues. MCAS PoTS Hypothyroidism (need T3 for life) ME. Please entertain me and let’s connect. In a previous life xcountry skier, hen and beekeeper, keen gardener and HCW. Alt text required.

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Reposted by Eleanor
Kate from Kharkiv @kateinkharkiv.bsky.social · 7h
by destroying our infrastructure. This is just such a low and cruel betrayal that it's hard to wrap my head around...
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Kate from Kharkiv @kateinkharkiv.bsky.social · 7h
essentially becoming sponsors of the Russian invasion of Ukraine. Just a day after a horrific terrorist attack by Russia that killed so many, and just before the winter when the Russian government screams from all the rooftops that they are going to create a humanitarian catastrophe in Ukraine
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Kate from Kharkiv @kateinkharkiv.bsky.social · 7h
So let's get this straight: Russia just murdered over 65 people in Ukraine in less than 48 hours. Crushed a building on top of sleeping families to celebrate Putin's birthday. And today, the U.S. announces that they are lifting sanctions on Russian diesel and planning to buy some,
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Eleanor @eleanoralbaugh.bsky.social · 13h
Just read the case of a ventilated child cared for at home having her vent. turned off by the nurse caring for her. Simply astonishing as the process involves a “Do you want to turn off life support?” message. Described as a mistake and no CPS case so now with NMC. Blimey. From the Liverpool Echo.
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Lorna the Sloven @duffycaramole.bsky.social · 15h
Base Health Visitors and District Nurses there. Foot clinics. Balance clinics. etc etc. Put them in communities where people can access them more readily, reducing travel times and expense. Rocket science? It would appear so.
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Lorna the Sloven @duffycaramole.bsky.social · 15h
Re-open cottage hospitals. Have a couple of 'convalescent' wards for people well enough to leave hospital but not to go home. Have local phlebotomy & xray services there. GP-specialist hub: under-2s, dermatology, etc. GPs on rotation from their base practice.
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Hilary @hilarym.bsky.social · 14h
And end of life and respite care All funded from the Duchy of Cornwall or similar “royal war chest” and named Prince William Centres They’ve got plenty of dosh; these services aren’t mega-expensive Just Do It
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Suffolk Sue @ruralsuffolk.bsky.social · 18h
And they've just ignored everything that came out of the Covid inquiry. In the meantime we're regarded as "anxious" and stupid for worrying about getting infected with a novel, mutating virus that a growing body of evidence shows is having multiple effects on our health 🤦🤬
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Eleanor @eleanoralbaugh.bsky.social · 18h
“When thinking about the miracle cure, we might bother ourselves with Buxton’s law: It is always too early to evaluate a new technology until, unfortunately, suddenly it’s too late.”
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Martin McKee @martinmckee.bsky.social · 20h
Incredible interview on R4 Today “It’s very difficult to get someone to understand something when their income depends on them not understanding it” Upton Sinclair
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Martin Lewis @martinlewis.moneysavingexpert.com · 08/10/2026
Please submit your small ideas for fixing Britain to the Small-Ideas.org website. It’s a new charitable initiative I’ve set up to try and make sure life’s potholes don’t get ignored. Working with two charities and a cross party panel to turn your ideas into policy then try and make it happen.
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Eleanor @eleanoralbaugh.bsky.social · 08/10/2026
The PACE Trial issues explained. One of the reasons #ME is treated as “other” and real medical care withheld still to many of us. Authors still involved in eminence-based medicine rather than actually considering the considerable published work, that shows them as the equivalent of flat earthers.
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Lucibee @lucibee.bsky.social · 07/10/2026
But again you can't compare. Each point on the bimodal scale means you've got worse. On Likert scale, every point >11 means you've got worse. How tf do you compare 2 scores where you've "got worse" each time? And then call that an "improvement" because one worse was slightly less than the other?
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Lucibee @lucibee.bsky.social · 07/10/2026
Well, not really, no. They were the same measures, sure. But very different criteria were used indicate whether a participant had improved or not, and how they assessed the overall outcome of the trial. The protocol is shown below:
10. Measures.
10.1 Primary outcome measures.
10.1.1 Primary efficacy measures.
Since we are interested in changes in both symptoms and disability we have chosen to designate both the symptoms of fatigue and physical function as primary outcomes. This is because it is possible that a specific treatment may relieve symptoms without reducing disability, or vice versa. Both these measures will be self-rated.

The 11 item Chalder Fatigue Questionnaire measures the severity of symptomatic fatigue, [27] and has been the most frequently used measure of fatigue in most previous trials of these interventions. We will use the 0,0,1,1 item scores to allow a possible score of between 0 and 11. A positive outcome will be a 50% reduction in fatigue score, or a score of 3 or less, this threshold having been previously shown to indicate normal fatigue. [27] 

The SF-36 physical function sub-scale [28] measures physical function, and has often been used as a primary outcome measure in trials of CBT and GET. We will count a score of 75 (out of a maximum of 100) or more, or a 50% increase from baseline in SF-36 sub-scale
score as a positive outcome. A score of 70 is about one standard deviation below the mean score (about 85, depending on the study) for the UK adult population. [50, 51]

Those participants who improve in both outcome measures will be regarded as overall improvers.
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Lucibee @lucibee.bsky.social · 07/10/2026
The authors', in their reply, claimed that the outcome measures used in the trial analysis were the same as in protocol. www.bmj.com/bmj/section-... But was that the case?
bmj.com
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Lucibee @lucibee.bsky.social · 07/10/2026
Of course, the eligibility criteria and the recovery criteria weren't the only changes from protocol (or pre-protocol). They changed the primary criteria too. Tom Kindlon noticed this, and tried to find out why. www.bmj.com/bmj/section-...
bmj.com
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Lucibee @lucibee.bsky.social · 07/10/2026
The main lump of fudge is how they (mainly Prof Peter White it seems) justified use of the lower recovery criteria of just 60 points on the SF-36 PF subscale. As far as we can tell, this was done very much post hoc, and uses some extraordinary mental and statistical gymnastics. Buckle up!
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Lucibee @lucibee.bsky.social · 07/10/2026
This gives rise to the scenario whereby a participant *could* enter the trial with a score of 65 and be classed as "recovered" with a score of 60 at the end of the trial. To be fair, this never happened. No-one fell into that category. But the fact that it was a *possibility* was a problem.
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Lucibee @lucibee.bsky.social · 07/10/2026
Only, this time, there was another problem. Although the original eligibility criteria for entering the trial was a physical function score of ≤60 (see TMG minutes below), this had been revised upwards to ≤65 to aid recruitment by the time the protocol was being written.
Extract from the PACE Trial Management Group (TMG) meeting on 7 May 2004:

The SF-36 Physical Functioning Sub Score. This scale is rated on a 0-100, 100 representing perfect and healthy functioning. The healthy adult working population score a mean of 90 with a standard deviation of 15. Those who have a chronic disease or depressive illness score 70 with a standard deviation of 20. After much discussion we agreed that patients would need to score 60 or below to enter the trial and a score of 70 or more would constitute a positive outcome. It was agreed that we would use the proportion of participants who had a positive outcome in both their fatigue and physical functioning score as another primary outcome measure. We would then be able to determine the percentage of people who improve on both measures. PACE trial protocol: Final version 5.0, 1 February 2006.

Section 7: Selection of Participants. 

7.2.2 Eligibility Items
3. The participant meets operational Oxford research diagnostic criteria for CFS. 
4. The participant's Chalder Fatigue Questionnaire score is 6 or more.
5. The participant's SF-36 physical function sub-scale score is 65 or less. 
6. The participant will be aged at least 18 years old.
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Lucibee @lucibee.bsky.social · 07/10/2026
However, the physical function criteria of ≥85 meant that virtually no-one met the criteria at the end of the trial, so not only did they drop the concept of 'recovery' for the main trial paper, but they massaged it heavily when it came to the actual 'recovery' paper. ≥85 became ≥60
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Eleanor @eleanoralbaugh.bsky.social · 08/10/2026
I trust Ed Zitron.
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Jules or Τζουλς 🕊️🍉 @katsikajules.bsky.social · 08/10/2026
How can anyone look at this and not feel utterly broken. Yet still today our airwaves our dominated by presenters with their views supporting the country doing this. @lbc.co.uk is like Zionism on steroids.
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BuDS Disability Service @buds-disability.bsky.social · 07/10/2026
Read our full analysis on our website: buds.org.uk/covid-19-ris...
buds.org.uk
Covid-19 Risk Assessment: Week Ending 4 October 2026
The BuDS Covid-19 Risk Assessment for the week ending 4 October 2026
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BuDS Disability Service @buds-disability.bsky.social · 07/10/2026
Covid infection levels in England are rising very steeply, and all the data is pointing in the same way. There is no sign yet of a slowing in the rate of infection or that we are nearing ‘the peak of the wave’. (1/2)
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BuDS Disability Service @buds-disability.bsky.social · 07/10/2026
Influenza (flu) levels in England are also starting to very rapidly increase and there is no doubt that the winter flu wave is starting.
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BuDS Disability Service @buds-disability.bsky.social · 07/10/2026
The Covid wave in England is growing very fast, and the overall Covid risk level has been raised to High. As of 4 October, 1 in every 175 people were infected, up 34% on the previous week. We continue to recommend that Covid-Cautious people take full precautions in ALL indoor places. A thread 🧵
Covid wave rapidly growing in England.
Risk level now High with 1 in 175 infected.
PPE masks recommended indoors.
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Equality Network @lgbtiscotland.bsky.social · 07/10/2026
The Young Women's Movement want to hear from young women and non-binary people, aged 16–30, about their thoughts and experiences of digital violence and its impact in their Status of Young Women in Scotland research survey. Survey closes on the 12th October. youngwomenscot.org/opportunitie...
A hand is holding a megaphone with zigzag lines to indicate loud sound. It says: "Share your views" "Status of young women in Scotland - Digital Violence and its real-life impact."
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valebodi.bsky.social @valebodi.bsky.social · 24/07/2026
October, 2023 Rapid Response: Steps doctors and other medical professionals can take today to improve medical care for people with Myalgic Encephalomyelitis @naomidharvey.bsky.social #ME/CFS #pwME
bmj.com
Steps doctors and other medical professionals can take today to improve medical care for people with Myalgic Encephalomyelitis
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Eleanor @eleanoralbaugh.bsky.social · 07/10/2026
Worse than we thought - admit there s no co-production despite spending a vast amount on exactly that.
benefitsandwork.co.uk
One short call could prevent PIP claims proceeding
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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Eleanor @eleanoralbaugh.bsky.social · 07/10/2026
#POTS services in Scotland Asking for info for someone newly diagnosed and another already Dx and treated about to move to Scotland. If already medicated successfully will this continue without hassle? If needing specialist referral where are the services? Aware of POTsUK discussions.
rightdecisions.scot.nhs.uk
Postural tachycardia syndrome (PoTS) | Right Decisions
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Cornish Skipper #FBPE #RejoinEU 🇪🇺🔶🌹💚💙 @cornishskipper.wsocial.eu · 07/10/2026
Chancellor Healey “rumoured to be looking at higher bank taxes in particular.” The Tories reduced bank taxes costing ‼️£18bn ‼️over 5 years. At least put those back & call out what the Tories did! Reverse the Tory bank tax cuts! #TaxTheBanks www.libdems.org.uk/press/releas...
libdems.org.uk
Conservative giveaway to big banks set to cost taxpayers £18 billion
Hunt slashes Bank Surcharge while raising taxes on struggling families. Conservative cuts to Bank Surcharge and Bank Levy to total £18bn over next 5 years. Liberal Democrat Leader calls for bank tax...
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rax ‘levon honkers’ king @raxkingisdead.bsky.social · 06/10/2026
a little louder for the cheap seats in the back
One of the biggest myths is that men rape by mistake. Like, "Oh, they need consent training." But research is very clear: Sexual violence is not a mistake. It is an intentionally made decision by people who know they don't have consent. They just don't prioritize consent over things like status, power, domination, and sexual gratification.
For my research, I got a certificate of confidentiality from the National Institutes of Health, so my notes couldn't be subpoenaed. One of the reasons I call them perpetrators in my work is because every single person I interviewed confessed in that context. The first question I would ask them was, "When you received that email from Title IX that you were under investigation, did you know what it was about?" Every perpetrator I interviewed said "yes." If sexual assault were a miscommunication, you would be wondering, What have I possibly done wrong? That is not the way that any of them reacted because they knew.
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Pete Fraser @petefrasermusic.bsky.social · 07/10/2026
This is incredibly important. I feel deeply that curbing sexual violence will come from raising social expectations of men, not from ‘educating’ them. I fear this is an unpopular view, because people are afraid to face up to the scale of the issue.
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Ian Denton @iand777.bsky.social · 06/10/2026
Greenfinches. When these birds start to bathe seriously, you know the camera lens is going to get a soaking. Their furious wing flapping can be heard at a distance. Field Maple and plenty of shallow bathing is the way to attract them. @dorsetbirdclub.bsky.social @btogbw.bsky.social
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Dr Dean Burnett @drdeanburnett.bsky.social · 06/10/2026
"By using AI, tasks like essays that used to take hours can be completed in minutes!" Sure, like how if I arrive at the gym and immediately go for a shower, my workout is done in record time. And if I throw my sandwiches straight in the bin, I can finish my lunch in under 10 seconds.
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BladeoftheSun @bladeofthes.bsky.social · 06/10/2026
The UK's 117 day long streak of somewhere having at least 20c every single day has ended today. This record trashes any previous year and proves beyond any doubt that the UK is suffering serious Climate Change.
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Tom Kindlon @tomkindlon.bsky.social · 06/10/2026
8/ Impact of fatigue in ME/CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #fatigue #chronicfatigue #chronicallyfatigued #fatigued #spoonie #spoonies #spoonielife
Impact of fatigue in ME/CFS 
"...My hobbies went one by one, friends disappeared. Cooking, eating, showering, cleaning the house have all been reduced over time. I can rarely cook from scratch now, it's exhausting. I rarely go out and can't go far when I do, I can't drive far any more...." 
Response from ME Research UK Symptom Saturday Fatigue Survey 
hel% RESEARCH UK SCO369.42 
INFORM. INFLUENCE. INVEST.
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Andrea Is Sick of Long Covid @andreastudiescovid.bsky.social · 05/10/2026
It can still disable you. Forever. People had a hard time when restaurants closed for a few weeks. It was seemingly the worst thing that had ever happened to them. Imagine being so sick that you have to stay home for five years. And you're still sick, and there's no treatment, there's no cure. 😷
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Oliver @oliver48.bsky.social · 06/10/2026
via Meg Graham
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Farrukh @implausibleblog.bsky.social · 05/10/2026
Conservative Helen Whateley, "Tax cuts have to be funded.. I'm doing work on what is the right way to bring down the welfare bill" My view: Why is the answer always more hardship for people who are already struggling, while vast wealth can be hoarded almost untouched?
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CiCi @cici6923.bsky.social · 04/10/2026
BBC Scotland is so shit and bias it will be a joy to see it dead. www.youtube.com/watch?v=k7sc...
youtube.com
The Armando Iannucci Shows - Except for viewers in Scotland
YouTube video by alanmarsden
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Tony @antonyillahiwarren.bsky.social · 04/10/2026
I snubbed the BBC after their Breakfast news said there was shooting around Al Shifa Hospital. I turned over to Al Jazeera and they're livestreaming Israeli forces blowing up the hospital and shooting anyone they see.
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Disability Rights UK @disrightsuk.bsky.social · 05/10/2026
"Social care for Disabled adults is in as much crisis as support for elderly people – so why is the government silent about it?" Read the @guardian story here: www.theguardian.com/commentisfre...
theguardian.com
Social care for disabled adults is in as much crisis as support for elderly people – so why is the government silent about it? | John Harris
Working-age adults such as my son, who is autistic, face an unreliable system, yet ministers talk only of a national care service for older people, says Guardian columnist John Harris
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Eleanor @eleanoralbaugh.bsky.social · 05/10/2026
#Hypothyroidism In UK it takes 3 miscarriages to get a full #Thyroid profile and iron panel in NHS? (According to guidance). Most potentially treatable common cause with a full test costing very little. Also #ME and #OI #POTs have no real UK-wide specialist diagnostic and treatment service in NHS.
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Eleanor @eleanoralbaugh.bsky.social · 05/10/2026
Fantastic! This is how the pelvis is meant to move - looking at you gents.
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Ian Betteridge @ianbetteridge.com · 04/10/2026
So basically five muppets with a couple of vans is enough to see the US withdraw bombers from Europe? If the USSR had known that, the Cold War might have turned out quite differently. www.bbc.co.uk/news/article...
bbc.co.uk
US removes all bombers from RAF Fairford back to home stations
A statement says all bombers deployed to RAF Fairford have been "re-deployed to their home stations" in the US.
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Andy Lewis @andylewis.bsky.social · 05/10/2026
What I suspect has happened is that they've run out of bombs, and there's no point in forward deploying your most expensive aircraft if there's nothing to hang on them. It'll suit the USAF to cite "security concerns" at Fairford, rather than say their magazine's empty or their logistics are shit.-
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Doug Parr @dougparr.bsky.social · 05/10/2026
4. And the unequivocal 'go ahead for Heathrow 3rd runway' says they aren't that interested in humans. The govts Impact Assessment says the Net Present Value for UK residents ranges from -£23.4 bn to -£62.5 bn over 60 years It's bad for people, because of -£58-82bn in noise, air pollution etc
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Safe Air Schools UK @safeairschoolsuk.bsky.social · 04/10/2026
3/3 Find the open letter here: www.safeairschools.org/campaigns/ Find the clip and full proceedings on our YouTube channel here: youtu.be/bPJXmmLjvj0?...
youtu.be
Barry Gardiner MP on Indoor Air Quality and the Need for Action (2026)
YouTube video by Safe Air Schools UK
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