Write to your MP Write to your MP Substack: https://www.thereforme.uk/ Linktree: https://linktr.ee/ThereForME About #ThereForME #ThereForME is a campaign led by patients and carers, calling for an NHS that’s ther...

docs.google.com/document/d/1...

Done. Please do take a few moments to help #pwME.

Sensory hell and medical harm My sister’s experience of very severe ME in the NHS

This is happening everyday, everywhere.

Read the story of Rosie and Alice.

Everyone who has been hospitalised with ME, knows it.

"Hospitals should be places of healing – but for people with severe ME, they are often sources of harm".

#GreatestMEdicalScandal

www.thereforme.uk/p/sensory-he...

Trump-proof the BBC The BBC is our national broadcaster, we must defend it against those who want to destroy it.

Please consider signing — Trump has threatened to sue the BBC (and therefore the British public, as we are licence-payers of this public service) for $1bn — huge irony considering what that man has done himself www.libdems.org.uk/bbc

Great to hear @matthewstadlen.bsky.social standing up against tyrants such as the Big Fat Orange one, but also Angela Epstein, who went on a nonsensical rant re the BBC (and failed to see the irony of Trump having 1,000s upon 1000s of times spurred out falsehoods, let alone undermining democracy).

#SevereME #MyalgicEncephalomyelitis #MECFS #MillionsMissing

#SevereME #MyalgicEncephalomyelitis #MECFS #pwME

The problem with using the broader “CFS” definitions… is that the study samples “will include cases with many other causes of fatigue, including other organic disease or depression or mental health illnesses. This is not good for research,” said Luis Nacul, MD, PhD.

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...

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

We Can Make an Impact. Save Karen Gordon from Dying of Malnutrition and Dehydration due to NHS Failings.

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

Haha! You got it!

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

What a difference two months make…

Then, July 2025. Now, Sept 2025.

#naturephoto #nature #photography

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?

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

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

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.)

@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.

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

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

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

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

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

Solve ME/CFS Initiative Summer 2025 Chronicle

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

#LongCovid #MEcfs

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

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."

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

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

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...

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....

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. hbaxter@25megroup.org

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

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