Article Independent: ‘As lockdown eases, those of us with chronic illnesses must not be left behind’ June 2020

Sly Saint

Senior Member (Voting Rights)
During this pandemic, we have seen a spotlight shone brightly on chronic illness like never before. That those with pre-existing health conditions and the elderly are most likely to be significantly affected by Covid-19, means we have come together to protect people who previously felt invisible. Covid-related messaging that no societal obligation is worth risking your health for was already part of the chronic illness tool kit, and this reality is now finally being seen.
This week in parliament, Conservative MP Sir David Amess asked the Leader of the House about help for endometriosis sufferers, especially those whose treatments and surgeries have been delayed or cancelled during the crisis
The same goes for a major UK study into Myalgic Encephalomyelitis (ME) announced this week, investigating a widely misunderstood and devastating condition. Worryingly, one of the long-term effects of corona is chronic fatigue symptoms, leaving previously healthy people unable to manage simple daily tasks. ME is thought to be triggered by viral infections, yet the extent of its impact remains underreported, highlighting the crucial need for this study.

When quarantine began, comedian Miranda Hart spoke of the seemingly endless nature of this virus holding a mirror up to the emotions of those with chronic illness, tweeting: “As well as dealing with illness there is daily grief on missing out on the simplest things people take for granted. A café. A walk. A bus ride. Views.” As Miranda eloquently outlines, feeling heard makes a massive difference when someone is trapped under the heavy toll living with a chronic illness takes.

full article here
https://www.independent.co.uk/life-...sses-coronavirus-healthcare-nhs-a9585511.html
 
Back in the 'old days' days we all here remember from not so long ago, any of a number of recent articles like this one would be followed by swift and cutting replies from the BPS brigade. They would follow within a few days and picked up seemingly everywhere at once on social media.

First the trolls stopped posting comments en masse and now it seems the newspapers don't feel a need to quote, throughout the text, the BPSers to frame the story with their particular narrative of our illness. Whatever next.

There's still the possibility of a big spread to come, taking back the 'we are the final solution' 'people with ME hate us for no reason' 'we as researchers deserve better than to have these people seen as deserving of basic respect as human beings'* narrative that they have been so good at in the past.

But so far it's all quiet. A nice reprieve.

*Of course they would deny that blatant framing of people with ME. But as we well know, that's exactly how we've been treated by them despite their protest to the contrary. And they did that by simple not listening to us. By constantly gaslighting.

If we said we did not think our illness was being perpetuated by psychological factors they'd reframe it and tell the world we were disrespecting the mental health community. If anyone dared speak up about poor quality research they were militants who had no business sticking their nose into things they didn't understand. If we pointed out inconsistencies in the narrative we were labelled a powerful lobby group and so on.

All aided and abetted by the news who followed the eminence is always right school of thought.

Just IMO but I don't feel that the press has 'balanced' those years of gaslighting yet. Time for more and better articles on ME.

I know this article was not specifically on ME. But it's so much better than most anything even a year ago in UK news press. And so I'm using it to cheer for a future with less gaslighting by BPS cabal.
 
> Just IMO but I don't feel that the press has 'balanced' those years of gaslighting yet. Time for more and better articles on ME.

i agree with @Snowdrop.


i don't think allowing the event that pwme are still experiencing to pass quietly into unread and uncurated history will do pwme, today's misopathized disease populations, or future disease populations any favors.

pwme are dying. multiply that by the persecuted diseases in general and those that are being groomed for that role.


but it gets worse.

some places in the world as we speak are not doing triage normally or will soon not do so. they will do catastrophic triage. seat of the pants triage. prejudice triage. political triage.

hospitals overwhelmed, everything built up since the age of reason gets thrown out the window.

which populations lose in this case? ones perceived as burdens to society.


and it gets even more bad.

action t4 has to be kept in mind in a world that is a tinderbox. every national, religious, racial, ethnic, ideological, political, dogmatic, you name it group has an axe to grind. outgroups will be sought. no question.


despite this the problem is unknown. nobody thinks about it.

it is there in every age. but it is never named, rarely thought of, still more rarely directly addressed or coherently covered.

it gets mentioned occasionally only. compare to other persecutions and you will see what i mean.


the solution has many parts. just liek the solution to any perecution.
but impunity is one of the biggest problems we face in stopping existing and future persecutions.


why impunity, you ask? can we not just let bygones be bygones? make a few reforms here and there? no need for anything fundamental?

i have already answered that and will answer it again:

---> without consquences to individual perpetrators, the stupendous heights to which a regime of persecution can rise becomes a lower bound for persecutions to come. anything else can be and will be worse. <---

and this is a persecution that has no structure for collective memory. history will repeat.


in this vein what's needed is to use all forms of law, media, and every other channel to impose consequences for persecution of all and any disease populations.
 
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