UK: “Stronger Together” – ME/CFS Alliance 20th Anniversary event, The Pavillion, Winchester Cathedral, 4th March 2026: 10.30-4.00

[Hutan]

We have moved a number of posts related to a thread about paralysis.

 

[Jonathan Edwards]

Did any members attend?

Apart from Ponting the names of speakers don't excite me that much. It would have been good to meet Rob Wüst, but I didn't get a ticket.

 

[bobbler]

I know, because I have sent the BBC (and will again today) letters on prior events. They know that chronic fatigue is a symptom and not the name of the disease and can not be used in titles like this. I have repeatedly complained about this after the past few years as I know have many others. But given I know they know this because I have sent them many letters I also know the dismissing title is wholy intentional on the part of the BBC.

Oh guess yes it’s intentional - the article doesn’t even have that term in it so it has been deliberately super imposed on top of an article using me/cfs throughout it.

I can half imagine the meetings if it’s a separate person/team doing headlines once they get the articles

And the old-fashioned claim of ‘but will they understand it’ being used as an excuse which is weak because every other illness they use the name of the illness eg Alzheimer’s or MS and know people are capable of using Google if that’s a problem and that writing a descriptive term risks being tropey and inaccurate eg even saying ‘memory related illness’ most people know wouldn’t be accurate enough these days.

Maybe those doing it intentionally aren’t aware of their bigotry driving them maybe they are but that’s the only question not whether it’s intentional or whether bigotry from beliefs being cuddled by them are the cause. And of course they’ll have all sorts of excuses to try and tell themselves they aren’t causing harm by doing it - hence the reversal claim of mental health stigma by gerada etc (when nothing is more supportive of those with mental health than keeping those doing their jobs wrong and harming mental health pulled up and called out) .

It’s not even a topic where they can claim they need to attract in those who might have it but not aware of what to look for (like the old ‘this key symptom means you should ask your doctor about y…’ ) as it is about research

Weird as I was drifting off the other day and thinking that a real cause of the misery of added foot on neck disability we’ve all had even when there were times many years ago some might have had a real medic treating them but still then being put under this maltreatment and misery of how others are taught to act towards them of how much of a thing this , all we’ve unnecessarily suffered, is actually driven by a media drive (which then of course might have been pushed by others/other stuff).

I hope the charities have omit a tripe list but together and distributed as part of the style guide to media. But if so it begs the question given how keen bbc would try to be vs even some other vehicles on not being politically incorrect supposedly why this old-fashioned habit is one they won’t/can’t break.

Maybe it is that they can’t understand the difference between symptom and illness and how some with the illness they might know might say ‘having a bad day with chronic fatigue’ (because it’s accepted and understood as a concept) isn’t them mentioning what condition they have (because that’s only certain people’s business). I do think the wellness industry lot being given ears they shouldn’t by certain people (and particularly they shouldn’t for ‘others’ up to them if they want to for themselves choose to spend money listening to gongs) who have what they don’t realise is a disability bigotry because they’ve been misled into thinking that’s ’do-gooding helpful’ not weaponising it is an issue in this too - only based on people I know who work there and impressions from watching the entire organisation like everyone else does over the years.

It’s very disrespectful to pwme and they refuse to understand this coming up with all sorts of straw men . But not helped by how many when newly sick are forced to play this pretending to love meditation duty in order to please all those with power over them - and those with power pretending not to acknowledge that phenomena is therefore falsely coerced and not because everyone needs suddenly thinks it works.

They will pull this stunt next time. It doesn't matter what the title ultimately ends up on, its the title that most people see and read and in todays world that is the first few hours of the article going up. Its disappointing that the BBC still sees fit to minimise this disease.

The way we should be handling it then is taking a screen shot of the before and logging when it changed for each occasion . And here is a great place for that

Then Writing into whatever the name of the programme they have where you write in with issues and saying ‘why is this an ongoing issue’ and citing the dates to say eg it has been at least twenty times in a row of the same thing …. And as it is always changed could someone confirm that rather than ‘doing this dance’ whatever kept causing the issue has been addressed for next time

And seeing what justification or honesty comes back

But yes making it obvious that it’s starting to look to anyone like choice to not learn on that … so why ?