Steve Topple: The media is waging a coordinated war against chronically ill and disabled people

Andy

Andy

Senior Member (Voting rights)
The UK is currently in the grip of Brexit. But amid this chaos, there is another, more sinister story brewing. It’s that of a group of chronically ill and disabled people, and the all out war against them being waged by medical professionals and the media.

This is the first of three stories. This part deals with the media. The second will deal with the ‘whys’ of the situation. The third will deal with the real-world implications for chronically ill and disabled people.

Myalgic encephalomyelitis
As I previously wrote for The Canary:

Myalgic encephalomyelitis, commonly referred to as ME, is a chronic systemic neuroimmune disease. It affects an estimated 17 million people worldwide and around 250,000 people in the UK. While symptoms vary for every person, people living with it often experience:

  • A worsening of symptoms brought on by physical activities, mental activities, or both. Often referred to as post-exertional malaise.
  • Flu-like symptoms.
  • All-over pain.
  • Sleep disturbance / problems.
  • Cognitive impairments.
  • Impairments of the body’s autonomic systems, such as nervous, digestive, and endocrine.
  • Hypersensitivity.
But ME has been fraught with controversy. For decades (and often still to this day), the medical profession has not properly recognised it. People living with ME have been disbelieved, stigmatised, given incorrect treatment, or told it’s ‘all in their heads’.
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https://mrtopple.com/2019/03/18/the...-against-chronically-ill-and-disabled-people/
 
It's a pretty good piece covering the main PACE/Sharpe/DWP issues. He knows his stuff on this topic.

He talks about his partner's illness in one of the links he gives.

https://mrtopple.com/2019/02/10/why-im-giving-up-writing/

The one reservation is Steve's background formerly writing for the Canary. Whilst I support many of the issues it covers, it often sensationalises stories and gets facts wrong.

That said, he is using his audience to get out the story out to a wider public and is to be commended.

Also looking forward to a piece from the Guardian's Frances Ryan. :)

UPDATE: when I had a bit more time & less brain fog I read the later articles. They do get increasingly more ranty and go into conspiracy theory territory.
 
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This is the second in three articles. You can read the first one here, and the third one will be out in a few hours.

The war continues…
As I discussed in the first article, there is currently a coordinated media war against chronically ill and disabled people who live with myalgic encephalomyelitis (ME, ME/CFS, chronic fatigue syndrome). This is because of patients and supporters’ objections to PACE trial – a study which defined treatment for them.

As I said in the first piece, the ME story has many threads to it. And one of them, detailed below, has far-reaching implications for people outside the ME community. It also shows why, in part, the media have waged this war. Because there’s a lot at risk if it loses.
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https://mrtopple.com/2019/03/18/the...d-war-on-chronically-ill-and-disabled-people/
 
I think it is generally good, but that the history does not go back nearly far enough. The time that needs looking at in detail is 1993 when Peter Lilley brought in John LoCascio, and "sang" his little song to the party conference.
 
This is the third of three articles on the subject of myalgic encephalomyelitis (ME, ME/CFS, chronic fatigue syndrome) and a current media campaign which is targeting patients. You can read the first one here and the second one here.
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But there are effects of the PACE trial on chronically ill and disabled people that are not often discussed. They can be absolutely devastating.

Diagnostic chaos
Firstly, I think the issue of misdiagnosis by medical professionals is a massive one. As I’ve previously written, my girlfriend Nic was parked with a fibromyalgia diagnosis for years. But I don’t think she’s alone.

Research shows that between 2001 and 2013, diagnoses of ME/CFS fell by nearly five percentage points. During the same period, diagnoses of fibromyalgia increased by nearly six percentage points, sharply increasing around the time PACE trial was introduced
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https://mrtopple.com/2019/03/18/don...e-war-on-chronically-ill-and-disabled-people/
 
I just read the first one, and there were some good and interesting bits in there, but I thought there were also some counter-productive sections.

I think it's probably a bad idea to bring up Kelland's other reporting unless you've really had time to go through, check the evidence, and find areas where she was wrong. There's a possible narrative of her just being an instinctive shill for various bodies with money, power and influence... but was her work on those areas misleading?

Kelland seemed to assess Tuller's work not by checking whether he got things right or wrong, but by thinking he was some sort of shill for the unreasonable patients who he'd crowd-funded from (even though his work on this topic long pre-dated any crowd-funding). She didn't point to errors in his work, but spun a narrative. It's a cheap way of working imo, and shouldn't be applied to Kelland any more than Tuller.

I think that speculations like these are really unhelpful with any writing around PACE:

Not least among these, in my opinion, is the notion that it is part of a wider pandemic of chronic illnesses worldwide. I’m convinced ME has its roots in virology/immunology. I am also certain it is catastrophically under-misdiagnosed. And I’m also convinced the degradation of our bodies via soil depletion, air pollution, poor diet and more is making humans more susceptible to diseases and illnesses than ever before.
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The best way to challenge the unfounded assumptions of others is to stick closely to the evidence imo.
 
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Estherbot said:
He talks about his partner's illness in one of the links he gives.

https://mrtopple.com/2019/02/10/why-im-giving-up-writing/

:)
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"My partner Nicola is chronically ill, as many of you know. Before we got together she had previously been told her illnesses were ‘all in her head’ and mental health-related, even to the point that professionals sectioned her under the Mental Health Act when she was desperate for support."
 
Sly Saint said:
I've not had much luck getting C4 interested in the PACE trial scandal (not from a health news perspective anyway, or Dispatches) and I am not entirely sure how twitter works but Jackie Long is their social affairs reporter and there is this on her twitter feed;


just wondering if someone feels it worth replying and linking to Mr Topples blogs as certainly the history is very relevant.
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When Frances Ryan publishes her Guardian piece, it might be worth contacting Jackie Long & other relevant journalists.

Essentially you're leveraging content in the "mainstream media" to generate more.

That's what happened with Kelland's Reuters piece, it stimulated similar pieces elsewhere. (no doubt abetted by the SMC)
 
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Estherbot said:
When Frances Ryan publishes her Guardian piece, it might be worth contacting Jackie Long & other relevant journalists.

Essentially you're leveraging content in the "mainstream media" to generate more.

That's what happened with Kelland's Reuters piece, it stimulated similar pieces elsewhere. (no doubt abetted by the SMC)
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I tried interesting Channel 4 News, both with Jackie Long and Cathy Newman, but no luck. Cathy passed it on to the science correspondent and he said nothing to see here, move along.
 
Estherbot said:
Steve has also been accused of anti-Semitism too for his past Tweets.

https://www.thejc.com/news/uk-news/...tisemitic-conspiracy-theory-theories-1.473575

Whilst we appreciate his work on ME, critics will bring up articles like this one to condemn him.
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Yeah I mean he’s been accused of antisemitism and goes on Russia Today...not a great track record.

It’s difficult isn’t it. I think if it was any other subject I’d distance myself from someone like that ASAP, but we don’t really have the pick of the bunch :/
 
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