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traceydooley.bsky.social @traceydooley.bsky.social · 9d

Privatisation = "the drain of resources away from NHS providers" + "profit margins that keep the private sector seeking more NHS-funded work mean that every £1 spent in the private sector delivers LESS value in the form of patient care than the same amount spent in-house NHS services" rb.gy/th6gdq

ICB WATCH: New figures show uneven trends on use of private sector? - The Lowdown

New figures published earlier this month show the extent to which some Integrated Care Boards (ICBs) have increased their use of the private sector since Labour took office last July, and the extent t...

lowdownnhs.info

traceydooley.bsky.social @traceydooley.bsky.social · 13d

TWO years on, very severe M.E. patient Karen Gordon STILL fears for her life due to #NHSfailings — & still needs our help.

Anyone who hasn’t yet, please SHARE & consider signing her petition🙏

rb.gy/12xvic

An update of which is here:

chng.it/CGMQTDVvRb

#SevereME #MyalgicEncephalomyelitis #MECFS

We Can Make an Impact.

Save Karen Gordon from Dying of Malnutrition and Dehydration due to NHS Failings.

chng.it

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traceydooley.bsky.social @traceydooley.bsky.social · 21d

Haha! You got it!

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James Comey @jamescomey.bsky.social · 22d

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traceydooley.bsky.social @traceydooley.bsky.social · 22d

What a difference two months make…

Then, July 2025. Now, Sept 2025.

#naturephoto #nature #photography

Picture of thistle in Summer and then Autumn 2025...

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Robert Reich @rbreich.bsky.social · 23d

The richest man on earth owns X.

The second richest man on earth is about to be a major owner of TikTok.

The third richest man owns Facebook, Instagram, and WhatsApp.

The fourth richest man owns The Washington Post.

See the problem here?

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traceydooley.bsky.social @traceydooley.bsky.social · Sep 16

Agreed. And here's an excellent summary of the (significant) difference between Pope Leo and Elon Musk — the former calling for compassion and inclusion, the latter spreading hatred and division, courtesy of The Times comments section at tinyurl.com/yyyyfvmw

The (significant) difference between Pope Leo and Elon Musk — the former spreading compassion and inclusion, the latter spreading hatred and division.

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Royal Free 1955 @rfh1955.bsky.social · Sep 12

Ayrshire Post and Troon Herald, Scotland, 12th September 1986. Thirty-nine years ago today.

"Exercise should never be undertaken where M.E. is suspected as this worsens all symptoms". #myalgicencephalomyelitis

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traceydooley.bsky.social @traceydooley.bsky.social · Sep 9

Agreed. Medics with a thorough training in M.E. understand that M.E. and 'CFS' are not and cannot be the same. (Although, to help those newly diagnosed with #MyalgicEncephalomyelitis gain access to research, etc, I understand the 'search' term ME/cfs.)

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traceydooley.bsky.social @traceydooley.bsky.social · Sep 9

@steverichards.bsky.social
Thank you for saying, quite rightly, that you're more interested in the decaying #NHS — 'Four in five NHS hospital trusts are failing' — than the not-so-princely Harry on @news.sky.com Press Preview this morning.

traceydooley.bsky.social @traceydooley.bsky.social · Aug 26

This couldn't be more pertinent to what's happening in Trump's USA right now...

"A nation that continues...to spend more...on military defence than on...social uplift is approaching spiritual death." ~Martin Luther King

traceydooley.bsky.social @traceydooley.bsky.social · Aug 26

Yes, contrary to what *some* people say (Farage, I'm looking at you, for one), the ECHR is actually good for us Brits. Why change that. (That's a rhetorical Q, obviously.)

#ECHR

traceydooley.bsky.social @traceydooley.bsky.social · Aug 7

Some findings of the DecodeME DNA Study:

Genes found in:

• immune (fighting infections) -nervous system (chronic pain)
• NONE are related to depression or anxiety.

"This brings ME/CFS in line with other long-term diseases which have genetic components."

#MyalgicEncephalomyelitis #MEcfs

DecodeME @decodemestudy.bsky.social · Aug 6

Our initial DNA results! DecodeME have discovered that people with an ME/CFS diagnosis have significant genetic differences compared to the general population.
-
Summary of our results: shorturl.at/pgsjk
Check out our full preprint paper: shorturl.at/VwN3s

DecodeME: The Results announcement post. The graphic has a blue background with a DNA helix. In the centre of the graphic it says ‘We have released our initial DNA results! We have discovered that your genes contribute to your chances of developing ME/CFS.’ At the bottom left of the graphic is an image of a research paper.

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Tom Kindlon @tomkindlon.bsky.social · Aug 2

Solve ME/CFS Initiative Summer 2025 Chronicle

solvecfs.org/wp-content/u...

#LongCovid #MEcfs

Contents

How COVID and Long Covid Damage
Lung Tissues, and a Drug to Reverse
This Damage. . . . . . . . . . . . . . . . . . . . . . . . . 2

A Genetic Risk Score for ME/CFS. . . . . . 2

Solve M.E.’s Guide to Current
Clinical Trials. . . . . . . . . . . . . . . . . . . . . . . . . 2

Endogenous Retrovirus Activation
in ME/CFS, Fibromyalgia, and a Newly
Discovered, Related Disease. . . . . . . . . . 3

Updating the Long Covid Research
Index — Results from the RECOVERAdult Study. . . . . . . . . . . . . . . . . . . . . . . . . . 3

A Simple Hearing Test to Measure
Cognitive Decline in People
with Long Covid. . . . . . . . . . . . . . . . . . . . . . 4

Chronic Inflammation Raises IL-6
to Drive Neurobehavioral Symptoms
via Dopamine Disruption. . . . . . . . . . . . . . 4

Register for Solve’s ADDRESS-LC Trial
Webinar. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5

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traceydooley.bsky.social @traceydooley.bsky.social · Aug 3

As someone with a DX of both M.E. and fibromyalgia, I wonder whether that explains why I can 'walk' for a few hours 3x pw BUT will suffer great pain and especially cognitive dysfunction more than a typical 'physical' tiredness, if that makes sense.

#pwME #MEcfs #fibro #fibromyalgia

traceydooley.bsky.social @traceydooley.bsky.social · Aug 3

This is very interesting:

"Astonishingly, patterns of endogenous retrovirus activation suggested that women diagnosed with both ME/CFS and fibromyalgia may in fact have neither dis- ease, but a different disease altogether (distinct from both ME/ CFS and fibromyalgia). This study appears in eLife."

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M Meerkat @kackbro.bsky.social · Aug 2

Going to have to Update The
Stephen King Book Collection.....

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traceydooley.bsky.social @traceydooley.bsky.social · Aug 2

Yet another life lost to #MyalgicEncephalomyelitis. A totally avoidable loss but for the complete lack of specialist care, research funding, training, and guidelines on treating this cruel and hideous disease.

#pwME #MEcfs

Ralf Wittenbrink @ralfwittenbrink.bsky.social · Jul 13

Triggerwarnung: Tod, Sterbehilfe

„Am Dienstag, den 15. Juli um 10:30 Uhr wird unsere liebe und besondere Leidensgenossin Denise Burgy durch Sterbehilfe aus dem Leben scheiden.
Das Leben mit der schweren, behindernden ME-Erkrankung wurde vor einiger Zeit unerträglich, und Denise …

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EndMalnutritioninME @malnutritionme.bsky.social · Jul 19

Gastrointestinal symptoms are very common among people with #ME and can lead to malnutrition. Yet there is very little research in this area.
#HealthResearch #MedSky
nutritionandmetabolism.biomedcentral.com/articles/10....

Gut inflammation in chronic fatigue syndrome - Nutrition & Metabolism

Chronic fatigue syndrome (CFS) is a debilitating disease characterized by unexplained disabling fatigue and a combination of accompanying symptoms the pathology of which is incompletely understood. Ma...

nutritionandmetabolism.biomedcentral.com

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wamesmecfs.bsky.social @wamesmecfs.bsky.social · Jul 10

Helen Baxter from the 25% Severe ME Group wants to talk to people in the UK of all severities who are taking off label drugs for ME (i.e. those unlicensed for ME), whether they are being prescribed on the NHS or purchased privately. [email protected]

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traceydooley.bsky.social @traceydooley.bsky.social · Jul 21

Yet another life lost to #MyalgicEncephalomyelitis. A totally avoidable death but for the complete lack of specialist care, research funding, training, and guidelines on treating the hideous disease that is #MEcfs.

#pwME

Ben Nevis @bennevis.bsky.social · Jul 20

Bridget O'Shea
February 1, 1978 – July 16, 2025

@Bridget_OShea 🐦✖️🐦
Jul 13 2025
I called my mom. I told her I'm afraid I'm going to die.
Her response?
She hung up. 😫 #MEcfs

www.dignitymemorial.com/obituaries/c...

https://www.dignitymemorial.com/obituaries/chicago-il/bridget-oshea-12458050

https://simonwessely.com/papers-chronic-fatigue-syndrome/

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traceydooley.bsky.social @traceydooley.bsky.social · Jul 21

A tragic loss of life. Avoidable deaths complete lack of specialist care, research funding, training, and guidelines on treating the hideous disease that is #MEcfs.

#MyalgicEncephalomyelitis #pwME

Something Chronic @somethingchronic.bsky.social · Jul 20

💙💙
Two hearts for the two people who I’ve heard about today that have died from ME.

So many don’t realise that ME can be fatal.

RIP

#ME/CFS #SevereME #DontLetMEdie

valebodi.bsky.social @valebodi.bsky.social · Jul 20

In memory of Judith Schossböck. Judith was a scientist, artist, activist and active member of the Burning Man community. She died in December 2024 with #ME/CFS and a combination of insidious chronic diseases.
youtube.com/watch?v=3FBW...
@judyintheskynet.bsky.social #pwME 💙🕯️💙

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traceydooley.bsky.social @traceydooley.bsky.social · Jul 21

Yup, and meanwhile £30 billion per year is lost to fraud by corporations and the very wealthy, etc, evading tax and other forms of non-compliance, 'not taking reasonable care and so on.

ME Foggy Dog @mefoggydog.bsky.social · Jul 20

Let’s bust some myths:
❌ PIP fraud rate? Just 0.2%.
❌ “Economic inactivity”? Most disabled people pay taxes, or did before illness/#disability.
✅ Benefits aren’t wasted. They fuel the economy.
But you wouldn’t know it from the headlines.
www.mefoggydog.org/2025/07/20/l...

#pwME

Labour’s Disability Problem: Cuts, Silencing, and Systemic Bias | ME Foggy Dog

Labour has a disability problem, and the way they’ve handled the so-called "welfare reform" bill proves it.

www.mefoggydog.org

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valebodi.bsky.social @valebodi.bsky.social · Jul 20

A reminder of what the global research output on #MECFS looks like, when compared to other diseases 😳

In the US at least, each of these other diseases now has a lower burden (measured in DALYs) than ME/CFS - and yet ME is barely off the floor.

@rorpreston.bsky.social

#MECFS #LongCovid

x.com

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traceydooley.bsky.social @traceydooley.bsky.social · Jul 21

"If.."?!

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