ME/CFS: nothing has changed in decades as new campaign shows

Monday 12 May is ME Awareness Day – for myalgic encephalomyelitis (ME/CFS). Historically, it has been marked with patients sharing stories online, and campaigning for improved treatment and research. However, this year one group is taking the fight for patients directly to Westminster, and the Canary is proudly supporting it. Us and the group want to show that in decades, nothing has changed for people with ME – thanks to government, the medical profession, and not least the media.

#StillTheSaME

On Monday 12 May, the Canary and Not Recovered UK will be at Westminster. We will be protesting outside both the Department of Health and Social Care (DHSC) and parliament, starting at 12pm at Old Palace Yard (opposite parliament) and lasting until around 2pm. It is over what Not Recovered UK has branded things being #StillTheSaME.

We’ll be there with banners and placards like this:

However, the most important part of the protest is for people house-or bed-bound to be able to get involved online. So, we’ll be livestreaming what we’re doing onto our X (Twitter) account. And, we want people with ME, their families, and advocates to get involved too.

The campaign is centred around newspaper headlines from decades ago; ones like this:

The Cambridge Evening News, England. 7th April 1990. #cfsme #mecfs #myalgicencephalomyelitis #myalgice pic.twitter.com/9OcMD2smE6

— Royal Free 1955 (@RFH1955) April 7, 2025

In 2025, ‘top experts’ are still probing the disease – yet patients lives are no better. So, this is why Not Recovered UK is using #StillTheSaME – because so little has changed. And the group and the Canary will be asking politicians why.

If you’re following the protest at home, we want you to tag your MP and ask them why things are #StillTheSaME. We also want you to make some noise about why nothing has changed for people with ME in so many decades. You can tell your stories if you wish. Ultimately, we want to get both #MEAwarenessDay and #StillTheSaME trending. Not Recovered UK will be providing a resource pack with images and comments for people to be able to easily put together social media posts.

Where’s the funding?

Part of the problem is research funding. For example, a 2016 report highlighted that ME research represented approximately 0.02% of all active awards from major UK funding agencies. Additionally, the research spend per patient for ME/CFS was just £40 between 2006 and 2015, compared to £320 for rheumatoid arthritis and £800 for multiple sclerosis.

So, Not Recovered UK and the Canary will be trying to speak to politician and civil servants – particularly from the DHSC – to ask why the new ME Delivery Plan contains no money for research funding:

But overall, ME is a controversial disease – if you believe what you read in some of the media and listen to some medical professionals – although it really shouldn’t be.

ME/CFS: complex, or made complicated?

Myalgic encephalomyelitis (ME/CFS) is a complex and debilitating chronic illness characterised by extreme fatigue that is not relieved by rest and is worsened by physical or mental exertion. The exact cause of ME remains unknown, and it is believed to result from a combination of factors, including infections, immune system abnormalities, hormonal imbalances, and genetic predisposition.

A hallmark of ME is post-exertional malaise (PEM), where even minor physical or cognitive activity leads to a dramatic worsening of symptoms, often lasting days or longer and all too often with a permanent worsening for the patient.

Other major symptoms include profound fatigue, unrefreshing sleep, cognitive impairments (commonly described as “brain fog”), orthostatic intolerance (difficulty standing upright, often resulting in lightheadedness or fainting), muscle and joint pain, severe gastrological disruption, and sore throat or tender lymph nodes without clear infection. Symptoms vary in severity and can fluctuate unpredictably.

The illness significantly impairs quality of life, with many patients unable to maintain employment, education, or social activities. In severe cases, individuals may become housebound or bedbound. At its worst, ME has killed people.

Despite decades of research, there is no definitive cure for ME, and treatment focuses primarily on symptom management. Common strategies include pacing (to avoid overexertion), medications for pain and sleep disturbances, and supportive therapies such as cognitive behavioral therapy (CBT) or graded exercise therapy (GET)—though the latter is controversial and rejected by patients and doctors due to evidence that it worsens symptoms.

Patients and advocates often express frustration and distress at the lack of progress in understanding or treating ME. Several reasons contribute to this perception:

Historical stigma and disbelief: ME has long been dismissed as psychosomatic, leading to underfunding and a lack of scientific inquiry.
Biological complexity: The illness affects multiple systems—neurological, immune, metabolic—making it hard to study and diagnose.
Diagnostic challenges: There is no single biomarker for ME, and diagnosis relies on clinical criteria, which can vary.
Limited funding: Research into ME has historically received significantly less funding than diseases of similar prevalence and impact.

The same old trickery

Spoiler alert: the entire section above was written by AI. We did this to make a point: that a bot can write something more robust and accurate on ME/CFS than a lot of the media and some medical professionals can.

A good example of this is a Mirror article from 1998 – where notorious quackery-peddler ‘Sir’ Simon Wessely was about to release a new book. It and him were seemingly claiming that exercise/activity could cure ME – with the Mirror peddling it unquestioningly:

The Daily Mirror, UK. 9th April 1998.

An article about a book that was about to be released by Simon Wessely.#myalgicencephalomyelitis #cfsme #myalgice #mecfs pic.twitter.com/gsGC11QYu8

— Royal Free 1955 (@RFH1955) April 9, 2025

Of course, this was as much of a lie then as it is now – yet some medical professionals still push this. Moreover, the corporate media is a fair-weather friend when it comes to ME, too:

Either The Guardian got Covid a few too many times & forgot 4 years of their previous articles, or they have been captured by individuals with nefarious agendas. pic.twitter.com/OUzYusYGYw

— Laura Miers (@LauraMiers) September 12, 2024

And of course, this applies to chronically ill and disabled people more broadly. For example, the Times is up for an award for its coverage of ME – largely due to the death of Maeve Boothby O’Neill, journalist Sean O’Neill’s daughter. Sadly, the Times would throw chronically ill and disabled people under the bus for anything else – unless they’re middle class and don’t claim benefits (obviously):

But ultimately, the corporate media is just a mirror on the real problem: a system that refuses to give people with ME (and chronically ill and disabled people more broadly) the dignity and respect they deserve.

ME/CFS: cruel

So, Not Recovered UK and the Canary will be outside the DHSC and parliament asking why nothing has changed in decades – and what the UK government is going to do about it.

We want you to join us in person if you can. You can DM the Canary or Not Recovered on X for details – or just show up at Old Palace Yard at 12pm. Alternatively, get involved on X from 12pm with the livestream with a view to getting the hashtags trending.

The cruel treatment of people with ME, and the terrible state governments, medical professionals, and the media have left them to live in, is utterly unacceptable and always has been. It should not be #StillTheSaME – and its time to remind the world of this.

Featured image and additional images via Not Recovered UK