Special Report - Online activists are silencing us, scientists say Reuters March 2019

There are some odd little misprepresentations in this piece, eg - describing Tuller as a former journalist, presenting Afflicated as "a docu-series about CFS/ME patients", claiming Racaniello was a "Berkeley colleague", etc. They all serve the interest of Kelland's narrative, but it's difficult to believe she was deliberately misrepresenting things so trivial. Presumably she'll have to make corrections?

 

That's some pretty loud silence happening right now, being able to publish unfiltered disinformation by being gifted an international news organisation as PR representatives while being the recognized experts by governments in several countries.

I'd really love to feel that silence one day, to be able to say what I want uncritically, have it repeated as fact in news reports while being able to influence government institutions into implementing policies despite a complete lack of evidence.

"I am silenced", says the man screaming, alone and unchallenged, in front of a large audience and whose every word is taken at face value. Hmmm... Sure.

I am big fan of science-fiction and one of my favorite authors is John Scalzi. He is continuously subject to torrents of abuse from fans who don't like his politics. The man is a sci-fi author and mostly blogs about cats and burritos and still he gets harassed all the time. Sorry but the bar for having an "abuse" folder is basically as low as it gets and making accusations of guilt by association is pathetic. This is yellow journalism.

 

Yes! Thank you @NelliePledge

 

A "biological condition that can be perpetuated by social and psychological factors".

Has anyone in the PS group said exactly this before? If memory serves, I haven't noted ME being described as "biological" this group.

Are there examples of biological diseases being perpetuated by social and psychological factors?

Is cancer a biological disease perpetuated by social and psychological factors? ALS? MS? Stomach ulcers? Epilepsy?

For example, I don't recall seeing the PS model labeling IBS biological, and then saying it can be perpetuated by social and psychological
factors. I've always seen it portrayed as psychological by PS practitioners.

 

And yet they have an opinion on his work???!! How shocking.


Does one have to meet the Priminster to have an opinion on her impact on people?

How about Trump? Bush? Blair? Michael Jackson?

As the long awaited "hit piece", if that's what its supposed to be, this is just pathetic. It just rolls out the same old same old see through nonsense.

 

Uh, so it does work. Good to know.

AIDS advocates don't think much of HIV deniers either.

That one is just...

Most ME clinicians and researchers said they were told by colleagues to not go into the field, that it's career suicide. So this is correct but completely backwards because ideologues like Fink, Sharpe et al have helped sabotage the field away from genuine researchers.

 

I am not sure that a graduate in Russian and German would be in a position to give a helpful response to such a question.

 

Shame on the editor for publishing a one-sided account.

 

That's some poor journalism overall. Reads more like a high school cliques drama than a serious report on bad research and a large patient population being abused and stigmatized by what amounts to about a dozen ideologues with no evidence for their claims. Basically recycled pablum.

The choice of balance in reporting is frankly ridiculous. The facts are poorly researched and show clear bias, way too much bias to not consider much of it opinion. It basically ignores 90% of the substance and just takes controversial researchers accused of malpractice at their word, as if their words were fact.

I dare say this is a good example of fake news, disguising biased opinion with a clear agenda as a news report. Sad that Reuters fell for yellow journalism.

 

It helps explain why BACME 'chose' Colin Barton's group as their 'new' 'patient group' now AYME no longer officially exists.

 

The timing is so predictable. SMC continuing to act as PR representatives.

 

My heart bleeds for these poor researchers. I have recently been looking into the comments in the David, Wessely, Pelosi paper from 1988 when it was suggested, by these relatively inexperienced registrars, that it was unhelpful for doctors suffering from the illness to be involved in researching it. It transpires that this comment was almost certainly directed at J Gordon Parish, who at the time had thirty years experience in the field, and links to all the leading researchers of the time. What goes around comes around.

 

Meanwhile people died of a manageable disease. Really does not compare.

"These researchers say legitimate criticism is harassment of the worst order and they are offended, offended! Meanwhile these patients died while millions more suffer, who is more abused? We report, you decide."

 

No attempt at balance, but then I'm not exactly surprised given what she has wrote before.

 

Unfortunately I doubt they'll bother. When the last Kelland article was published I sent a very polite email to Reuters, pointing out that it was highly misleading to present Colin Blakemore as a neutral commentator when he was actually involved in green-lighting the PACE trial and consequently could hardly be considered unbiased. I asked them to consider amending the article to make this clear.

Apart from a standard automated response I didn't hear anything back and to date the article hasn't been changed.

 

The propaganda machine is working overtime

Frankly in most cases there is no such thing as balanced reporting, there is facts and there is a narrative or lies we want to manipulate people with. Some exceptions exist but in general "balanced" is a cover for perpetuating reality denial.

 

Yeah the factual errors alone and the laziness of the research really weakens the intent of the piece. This is barely fit for a student newspaper, and it would likely be required to make revisions for the obvious slant and agenda.

Not much to see here, frankly.

 

Thinking of the last Kate Kelland piece on the anticipated Cochrane review withdrawal. I thought in that piece she included enough detail for an astute reader to pick up some concern on the real issues.

And this article too (as I said up thread somewhere) gives strong hints towards an underlying problem. I’m not sure the BPS folk will be as pleased with the article as all that. Sure the headline is all their side, but deeper reading does give readers hints about where to find more about patient concerns.

Mentioning the CDC change is good too. Thinking folk will wonder about that detail.