Three ME patients reveal the accusations they have endured https://mol.im/a/7015737 Blamed for wasting doctors' time, branded attention-seekers and told their ailment doesn't even exist: Three ME patients reveal the accusations they have endured during their battle with the crippling condition. It's a controversial condition that has been swept under the carpet for decades But myalgic encephalomyelitis (ME) is physical - and is not made up by patients Millions of lives across the world are being ruined by the unrelenting condition Sufferers are often left house-bound, confined to their beds unable to move far MailOnline has spoken to three long-standing sufferers about their daily ordeals...
Credit to the Mail again for publishing a good article on ME and to ME Association patients and Merryns family for working with them on this.
The status quo is a complete disaster. This has to be hammered relentlessly. Its creators see nothing wrong with it, in fact view it as resounding success, want more of it, reject our raising the alarm consistently over decades as just whining, but it doesn't change the facts: it's a human rights disaster. Those stories are not horror stories, they are the norm, in fact there are even worse ones out there. There is no measurable difference between the UK, the origin point of much of the disaster, and countries that simply do nothing or even those that have similar policies, like Norway and Australia. Disaster is the norm, fueled by systemic discrimination out of health care and social support leading to an abysmal measured quality of life. It is universally disastrous and at this point, beliefs about the cause become irrelevant, millions of lives are willfully abandoned whole. It has to be a main theme of the NICE review and advocacy in general: the situation is disastrous from the perspective of sufferers. It has been consistently so. The only ones claiming success do not suffer from this condition and do not have relevant perspective on it. It's a disaster that writes off millions of lives completely in reckless cruelty. The psychosocial model of ME is an abject failure, verifiably so, and must be ended ASAP. Even worse: it is largely the product of choice, a physician-created and -abetted whole-system failure. Extra kudos for the Daily Mail to publish better journalism than Reuters on this topic. Words that should bring terror to people's spines. That's weird:
BPS must be reassessing their strategy. I expected a huge push back from them during Millions Missing. A few weeks ago is already lost to the fog of memory for me but I don't recall a lot of negative press. It seems they realise that being antagonistic is not going to score them points. I expect they are very much concentrating on issues behind the scene wherever they've decided things matter. So we will be surprised perhaps by someone who previously was supportive withdrawing support due to intense lobbying by BPS group or something like. ETA: And thankfully we are now spared the constant gaslighting that happened everytime a news article came out and absolute trolls would respond in the comments. That hasn't happened for a while now.
I remember the week in March when I was in Venice celebrating our 50th anniversary, spending all the time I was in bed reading the Rod Liddle stuff, about BBC interviewing Michael Sharpe, the Reuters article, writing in the comments section in the Times a reply to George Monbiot who had asked why patients wouldn’t want research. That was a coordinated pushback by BPS. I don’t necessarily mean it’s ended. Maybe they’re pushing all effort into Nice - who knows? I have posted a link to the Mail article on my personal fb page with a comment about the Mail outdoing theGuardian consistently with accurate info about ME, and it does. Not sure my friends who are Guardian readers like it nor have I liked realising it. The Guardian is supposed to be relied on for accuracy. Where else are they misleading us? I “ sat in” in 1968- the only paper reliably reporting what I saw happening was the Guardian. Times have changed. ETA: paragraphing
I don't recall seeing pushback from them during Millions Missing. Maybe I missed it. But that would've been a bad look, I think. They tend to pile on when SMC has something to push (or smear). But it's entirely possible they did this & I'm not remembering correctly. But gaslighting in comments hasn't exactly stopped. Happened just a week ago. Depending on the audience, it happens, to one extent or another, pretty consistently. Not always directly on news items, some of which don't have comments sections. Sometimes on Facebook postings of those items, or Twitter, or Reddit. It did seem for awhile like maybe this was lessening, but then every once in awhile it rears its ugly head. Sometimes it seems coordinated--specifically. The day that stops happening can't come soon enough.
@rvallee Excellent writing as always - don't know if you get any of your writing published - Canadian media is usually blithely, and/or willfully blind to ME - but I do hope your words, and others' reach more public in Canada. About the article - excellent! ME alone can ruin lives, and shatter families. Add in stigma, cruelty, misattribution, defamation, neglect, physical, mental and emotional abuse, all from top to bottom in the establishment, and we have a decades long human rights crisis of epic proportions.
Yes, I hadn't been thinking of anything other than comments after news items. I'm not on facebook or reddit so that could be a different issue.
I liked that they showed a few more realistic photos of patients rather than the usual stock photos of someone yawning.
I don't know if there is a tread on here about this, but it was confirmed this afternoon that Jennifer Chittick - one of the three women featured in the article - passed away yesterday. Shocking.
Here is the article: https://www.meassociation.org.uk/20...gner-beloved-daughter-and-sister-24-may-2019/
Horrible. And nothing will change. People die needlessly and almost nobody cares. And those responsible whine that the people they hurt keep sounding the alarm. This is madness. This has to be brought up to the NICE committee. I know they won't care but it has to be on record, that while they bullshit about exercise and brainwashing with happy thoughts people are dying because of their crap. At least have them respond to it, whatever nonsense they reply may at least haunt them some day.
@Keela Too please bring this to the NICE Committee's attention. I feel sick to my stomach. How can this continue to happen.
This. We need to get as much as possible about this brutal farce and the objections to it onto the formal record, so nobody can say they were not warned.
More importantly: to be on the record again about the consequences that have been profusely warned about with documented consistency for decades. Wessely loves to point out that he's been opposed for all this time, he just doesn't understand that it was for legitimate reasons. They were warned it would be disastrous. Comments against the Australian guidelines and the 2007 NICE committee judicial review were basically laughed at and dismissed with prejudice even though they warned very plainly that the consequences would be disastrous. They need to be on record again that they don't give a damn that it's disastrous for millions as long as they're perfectly happy with their little slice of life that will never bear any of the suffering that we have to endure every damn day. It's all fun and games until people die and evidence is indisputable that millions of lives are wasted over a stupid, ignorant belief system. Well, here we are, those responsible own every inch of this shitstorm and need to certify once more that, yes, they want this disaster, in fact want even more of it and feel really good, on record, about being the harbingers of mass suffering.
I'm finding it hard to imagine how an article like this could get published without someone, somewhere, having decided that the SMC could just go f*** themselves. And that in a national newspaper too. Rather encouraging.
