It’s 2024, and yet there’s still no general election for ‘ME’

It doesn’t really matter who gets elected during this years general election for the 1.9 million people living with long Covid or the hundreds of thousands living with myalgic encephalomyelitis (ME/CFS) in the UK.

Why…?

Well, imagine having pretty good health, then suddenly becoming unwell.

You go to your doctors and they do some tests.

The tests come back and nothing is found to be the cause.

So your doctor tells you that either your not eating properly or you must have poor mental health and you are simply just overdoing it.

You then change your diet and even try to exercise more. But it actually makes you feel worse.

You again go back to your doctor who not only dismisses you as they have done their tests already, but is now starting to question your sanity.

You are then left with treatments of cognitive behavioural therapy (CBT) and graded exercise therapy (GET) that have been proven to be harmful, almost like the use of alchemy for medical treatments in medieval times.

Yep, seriously, and this is 2024’s reality for people living with ME or long Covid.

This reality, regardless of who is in power, doesn’t seem to be changing anytime soon. Because not one party has mentioned ME or long Covid during this election, ignoring over two million chronically ill and disabled people.

So, what are ME and long Covid?

Myalgic encephalomyelitis (ME) as the Canary has repeatedly reported is often a post-viral illness that can be defined by the hallmark symptom of post-exertional malaise (PEM). Around 50% of people living with long Covid also meeting the criteria for ME.

With an increase of global pandemics and a decrease in post viral research funding, this figure is growing along with the charities bank balances that proclaim to support these patients. Although stated as “Chronic Fatigue Syndrome” by the NHS with no known cause or cure, many world-renowned doctors such as Dr Sarah Myhill and Dr William Weir have spent their careers trying to prove its existence only to be repeatedly shut down by a psych lobby that has profited from these claims.

Some would even argue that their theories and approaches to this condition has allowed themselves to make money while at the same time saving the NHS, DWP, and insurance companies billions.

So why are politicians ignoring ME and long Covid?

With millions affected globally, in its severest form ME can leave patients in conditions that are worse than some cancers and yet it is still being ignored. It’s the same for long Covid.

Yet neither are even in anyone’s general election manifestos.

But unfortunately this isn’t new, and that the history of medical neglect towards people living with post-viral illnesses goes a lot further back than the global pandemic that saw us all in lockdown. It has been rife throughout my entire life time, and I’m not that young.

Do you remember the outbreak of “Yuppie Flu” in the 80’s…? Thatcher’s government along with the mainstream media dismissing huge amounts of city workers that became unwell, many after catching Glandular fever or the EBV virus?

Or maybe you remember the famous, part-funded by the DWP, PACE trial in the noughties, that is now commonly used among scientists as an example of how not to conduct a randomised clinical trial, as it blatantly botches results in favour of the desired outcome.

It would be laughable if the results stating that GET and CBT helped people with ME wasn’t then implemented as NICE guidelines for the next decade-or-so, causing serious harm to patients. Or even if after the guidelines were finally changed in the 2021 there wouldn’t only be 30% of NHS hospitals choosing to follow them.

But with millions affected with ME globally, this really is no laughing matter and seeing the exact same things happen to people with long Covid, I want to know why is this never on anyone’s agenda?

The greatest medical scandal of the 21st century

You would think that once something has been stated in parliament as one of the “biggest medical scandals of the 21st century“, that it would at least be on someone’s manifesto in the general election. With millions also affected globally, the potential cost to the NHS, DWP, and insurance companies, it’s almost as if there is a collective interest in keeping this post-viral condition labeled as a psychomatic.

I mean, if this really was just a mental health condition then it wouldn’t effect things like giving blood, would it?

OK, so why can’t people with ME or long Covid give blood if this is just “fatigue”?

Maybe because this is a post viral condition, not a mental health disorder. And given the fact that poor mental health is rising under 14 years of austerity and a cost of living crisis you would think that medical funding for mental health should be used for actual mental health issues, not for proven post-viral conditions that are still being psychologised in the 21st century.

It’s almost like the medical equivalent of the Post Office scandal, but instead of going to prison you are sectioned, and instead of losing your job you lose your children, yet no one is doing anything to highlight, stop, or change this in this years general election.

Not on word in one manifesto.

Nothing on ME and long Covid.

Nothing.

Featured image via Envato Elements and the Canary