United Kingdom News (including UK wide, England, NI and Wales - see separate thread for news from Scotland)

[rvallee]

While Anita often receives supportive responses to her condition on social media, she says she has faced negative ones in the past being accused of lying or engaging in propaganda.
"If they can't imagine themselves in my position, it's very hard to understand," she says.
"If I see comments online, are they people I would want to engage with day to day in person? The answer normally is no, so I just don't let it bother me."

The big problem here is that 'they' could just as easily apply to trolls, shitposters, bigots, people stuck in conspiracy fantasy communities and... the medical profession. Medical forums that are gated for professionals discussing this only barely rise above this, and only in terms of style, not substance.

I have seen all of those things written or said out loud in those terms by medical professionals, including in the media, hell some of them got a lot of coverage, and this isn't surprising because that's what they've always said, and still say, about us.

Random people on social media mostly say those things because this is what medical professionals have said out loud in public. They don't know anything about it, only look at what medical professionals say and do (nothing) and vibe off of that.

The origin of the problem is clear, and it's also the same people who should be responsible for solving it, except literally no one is. A few days ago Chris Whitty, who was IIRC chief medical officer in the UK at the time of the pandemic, said in the COVID inquiry that the government doesn't have to say anything about LC because it's getting a lot of coverage in the news media.

Coverage which consists almost exclusively of those affected loudly, and rightfully, complaining how it's totally neglected and there is no help. We live in the world that propaganda, lies and fraud have created. Nothing has escaped it.

 

[Chandelier]

Overlapping Illness Alliance

Join the Overlapping Illness Alliance for effective advocacy and support for those with overlapping health conditions.

www.overlappingillnessalliance.org.uk

The Overlapping Illness Alliance (OIA) is a coalition of charities working to improve recognition, care and support for people of all ages living with complex, overlapping conditions.

We are an alliance of charities representing people with Myalgic Encephalomyelitis (ME), Long Covid, Ehlers-Danlos Syndrome (EDS)and Hypermobility Spectrum Disorder, Postural Orthostatic Tachycardia Syndrome (PoTS) and Mast Cell Activation Syndrome (MCAS).

These illnesses often present similar, debilitating symptoms including fatigue, pain, dizziness, brain fog, gut issues and post-exertional malaise. Despite their frequent co-occurrence and shared biological mechanisms, they are still too often treated in isolation, leading to fragmented care and delayed diagnoses.

These conditions are often overlooked and misunderstood. They are frequently underdiagnosed and poorly treated, leaving people feeling stigmatised or invisible in the healthcare system.

Together, we can transform neglect into recognition. We can turn isolation into inclusion.

Let’s build a fairer future where these conditions are recognised, respected, and properly treated.

 

[Jonathan Edwards]

Except that these diseases only seem to overlap in the minds of fringe physicians.
They say nothing about who they are or who has joined up.
I do wish this bandwagon would grind to a halt.
As I mentioned in an email to MERUK today, the constant repetition of this MCAS,EDS,POTS, mantra is a major reason why people with ME/CFS are banned from medical clinics now. The doctors just got fed up with it all.