Harassment claims in the media and social media.

Arvo said:
Off topic but posted for the amusement of readers: I once had a very vivid dream of being killed by overripe, mushy banana: it was slowly being pushed in my ear by a bear.
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Arvo said:
O gods, and I didn't even mention that my mother was there too... :rofl:
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Dx Revision Watch said:
So, tell me about your mother, Arvo.
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Dx Revision Watch said:
I dunno what Freud would have made of that one...
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“Sometimes a banana is just a banana.”

;)
 
Simbindi said:
Well, they stared down the barrel of the gun of repeated Freedom of Information requests, PWME attending their talks and having their work critiqued, so we should respect them as heroes they are.:rolleyes:
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:laugh:Oh God Simbindi, the way you keep bringing in the 'stared down the barrel of the gun' thing, is becoming almost an art form, it is making me laugh so much, every time. :D Thank you so much for your wit, it, & that of others here too, is making all this NICE nonsense much easier to bear.
 
On the harassment point, I think he’s fair to raise it in the way he does - we have to face it that, as a patient group, we have a PR problem. I hesitate to say this next bit but, IMHO, I do sometimes see behaviours that, whilst not necessarily abusive, are not helpful given the reputation we have.
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Now I'm back home and my PEM has subsided I thought I would expand on this point a bit more and give some more context/examples. My post above was and remains on the Tom Chivers article thread but I think this probably belongs more in this one.

As I said in my original post, I am hesitant to bring this up but I think it is important: whilst the caricature of ME patients is often highly unfair, I do see instances where the community acts in counterproductive ways. As I imagine this view may be as welcome as a cup of cold sick I will caveat it with the points I am not trying to make:

  • I approach this with a view of ruthless pragmatism. Thus, I am not arguing about whether it is fair that ME patients are seen in a certain way and thus may have to be careful in the way we engage lest we make that worse, just whether certain actions are counterproductive. That might not be fair but, to be honest, anybody who's contracted ME who still believes life is fair really hasn't been paying attention!
  • Similarly, to head off the argument 'why shouldn't we be angry?', see above. My point isn't 'ME patients are wrong to feel angry', it's 'does an expression of anger help or hinder patients?'. Different question, potentially different answer.
  • I am also not saying that harrassment claims are not often overblown, don't unfairly tarnish an entire patient community, nor that they are used to deflect proper criticism.
So, why do I say that I think that some responses are actively harmful? Here are the things that (all IMHO of course) that I think it's worth us considering - based on a mix of lurking here, following the response to Chivers' article and follow-up, and on conversations I've had with a couple of journalists over the years on this topic:

First, we should acknowledge there is a problem with our image. Mentioning the reputation of ME/CFS activists tends to get a defensive response that it shouldn't have ever been included in the article. For example, the recent Unherd article included:

When I last wrote about ME/CFS, in 2017, one researcher told me that “The last time I said anything public about CFS, I got followed around by an angry mob for about a year, on Twitter and email.
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I personally think that if a researcher tells a journalist that, it is not a failing of the journalist to include it in the piece. If I were a journalist and I got a quote like that, I would definitely include it. It is not a conspiracy or poor journalism to mention it. I know for a fact that there are several science journalists in the UK that won't touch this topic at all because of the reaction they've had in the past ('A series of deranged conspiracy DMs' was how it was described to me and I have no reason to believe the person saying it was making it up). Fair or not, that is a real problem.

Second is the 'Reddit Hug of Death' issue: People who have written about this topic get tonnes of replies telling them they're wrong and, coupled with our pre-existing reputation, this provides proof that getting involved in this topic will lead to a lot of social media grief. For example, if I look at the response to the second Chivers article I see somebody has helpfully posted screenshots from this forum where Jonathan Edwards describes him as 'remarkably naive' - I wonder, will that make him more disposed to come to hear the patients' side of view in future? Similarly, I am uncomfortable when somebody's 'bad tweet' is shared on patient forums so that loads of people can post replies. Sometimes, less is more, and fifty patients all turning up en masse to share the same view is counterproductive and plays into the image of a swarm of angry keyboard warriors. Click on the replies to any tweet on this topic and I think you'll find examples of what I mean.

(Related: Not a big fan of snitch tagging in general. Is it necessary to tag people like Michael Shape or Simon Wessely into twitter convos that they weren't previously involved in? It all plays into the harrassment image)

Third, any discussion of this topic in the mainstream will be accompanied by comments that see a (unproved) conspiracy that can just as easily be explained by bog standard crapness. I see portrayals of the key BPS players involved in a shadowy conspiracy with the DWP/insurance companies and knowingly putting out bad research. My guess is the truth is more mundane: the researchers genuinely believe they are helping patients, that resistance to their methods is due to patients' unwillingness to accept they are mentally ill, and that all objections are in bad faith. Further, I also think this explains a lot of the crapness of the research: if you genuinely think ME/CFS is down to the placebo effect of a false belief, that will blind you to the need to eliminate placebo effects from your trial design because the place is the treatment. Crapness, not conspiracy.

Finally, and this is probably more a dig at the main charities rather than individual patients, can we please move away from the psychological/physical debate? There are good reasons to believe this is not a psychatric disorder, but even if there weren't then CBT/GET would still be ineffective. I scream every time I see an article that says 'ME patient groups were unhappy that the disease is seen as psychological'.


To reiterate, the above isn't designed to imply 'the BPS researchers are right and we're all just a bunch of unhinged people'. More that we have had a reputation problem for years, it continues to cause real damage, and there are actions we could take (or stop) that would, in my view, be beneficial. I now retire to my bunker...
 
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Hi @Londinium. Thank you for sharing your summary of the situation as you see it. I agree with much of what you say, particularly the concern about charities repeating the unhelpful physical/psychological divide rather than focusing on the fact that CBT/GET don't work and cause harm.

I also agree that it is unhelpful when there is a huge pile on of critical posts on social media, thought I have joined in some twitter threads about media articles too. I try to be polite and make sensible points clearly, and I think it's fair that people alert journalists to their errors and misjudgements. How else will they learn?

A medium like Twitter is inevitably a place where any issue which concerns individuals will attract long runs of post saying similar things. That's more or less what it's designed for - as a place where people are free to have their say to people they would otherwise not normally contact. I rarely use if for that reason - it tends to lead to distortion and pile-ons, not intended by any individual as any sort of harassment, just lots of people eager to have their say.

What I think is unfair is attributing such pile ons on social media, and the inevitable minority of angry posts among them, to a 'community' and in this case laying blame at the door of 'the ME community'. There is no such thing. We are sick individuals who choose independently to participate in social media in ways of our own choosing. We here at S4ME have absolutely no control over or influence on how others behave on Twitter.

Laying blame on the whole patient community and saying it's our fault journalists steer clear of writing about ME, is, I think unfair. It's a bit like a politician saying they won't do anything any more for their constituents because a few individuals angry about some issue direct their anger at the MP on Twitter. The MP doesn't blame their whole community of constituents for the actions of a small minority, or stop looking into the issue because of a bit of anger. They understand that some people feel angry and powerless and want something done. And they also understand that Twitter is also inhabited by a tiny minority or really nasty trolls who take pleasure in disrupting, upsetting and frightening others. Journalists understand this too.

Taking the example you cite on the 'harassment' issue:
When I last wrote about ME/CFS, in 2017, one researcher told me that “The last time I said anything public about CFS, I got followed around by an angry mob for about a year, on Twitter and email.
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I have no problem with a journalist quoting this in an article. But I also think it's fair to point out to that journalist that it would be reasonable to expect them to ask the individual quoted to elaborate on what they meant by 'an angry mob', and to dig into what the concerns were of that 'angry mob', and find out whether the anger was justified, and whether, for example, it was really unjustified anger, or perhaps justified challenges on the validity of their research.

That's the difference between a reporter and an investigative journalist. The reporter takes at face value comments by individuals, and assumes their professorships make them reliable witnesses to their own story. The investigative journalist digs in to find the story underneath.

For example, Michael Sharp seems to spend a lot of time on Twitter making brief comments about his CFS research that imply that anyone who criticises his research doesn't know what they are talking about, and he blocks a lot of people. He has blocked me - yet the only times I have tweeted anything to him has been asking very poiite questions about aspects of his research, which he has never answered. I have never posted anything angry, rude, or the slightest bit threatening. I am sure he counts my tweets as harassment, and me as part of the angry mob following him around. In the Reuters' article a year or two ago, he complained of harassment, but the only tweets directed to him that were quoted were, as far as I remember, quite mild criticisms of his research. He conflates questions and criticisms of his research with harassment. A good journalist would find that out.
 
Trish said:
Hi @Londinium.
What I think is unfair is attributing such pile ons on social media, and the inevitable minority of angry posts among them, to a 'community' and in this case laying blame at the door of 'the ME community'. There is no such thing. We are sick individuals who choose independently to participate in social media in ways of our own choosing. We here at S4ME have absolutely no control over or influence on how others behave on Twitter.

Laying blame on the whole patient community and saying it's our fault journalists steer clear of writing about ME, is, I think unfair. It's a bit like a politician saying they won't do anything any more for their constituents because a few individuals angry about some issue direct their anger at the MP on Twitter. The MP doesn't blame their whole community of constituents for the actions of a small minority, or stop looking into the issue because of a bit of anger. They understand that some people feel angry and powerless and want something done. And they also understand that Twitter is also inhabited by a tiny minority or really nasty trolls who take pleasure in disrupting, upsetting and frightening others. Journalists understand this too.
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I don't disagree with the attribution point (hence my caveat about fairness), and certainly don't mean to imply any level of collective guilt. My view was more that I think 'any harassment is wrong, is down to a handful of people rather than all patients and, regardless of its existence, has no bearing on whether the science is correct' is likely a more successful argument than 'harassment doesn't exist' when I've spoken to journalists who have received this stuff in person. I also think it means, fair or not, that we all need to make sure that what we send/write holds up even if interpreted in the most negative light possible. It's also why I think things like GMC complaints are misguided - they will never go anywhere and just make us look aggressive.

I'm not sure the MP example holds up because journalists have far wider latitude in what they choose to write about. An MP has to help constituents that turn up at their surgery; a journalist can easily choose a quiet life by just omitting a couple of topics from their repertoire. (This isn't unique to ME/CFS, I know through friends a couple of political journos who privately will admit they would never touch the trans rights debate or certain other hot-button topics because they don't want the blow-back).

I have no problem with a journalist quoting this in an article. But I also think it's fair to point out to that journalist that it would be reasonable to expect them to ask the individual quoted to elaborate on what they meant by 'an angry mob', and to dig into what the concerns were of that 'angry mob', and find out whether the anger was justified, and whether, for example, it was really unjustified anger, or perhaps justified challenges on the validity of their research.

That's the difference between a reporter and an investigative journalist. The reporter takes at face value comments by individuals, and assumes their professorships make them reliable witnesses to their own story. The investigative journalist digs in to find the story underneath.
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Again I feel that is less likely to be successful an approach than the 'don't tar with the same brush' argument - you only need one intemperate email sender to disprove the entire conjecture.
 
I agree with a lotof what you wrote @Londinium however -

Londinium said:
My guess is the truth is more mundane: the researchers genuinely believe they are helping patients, that resistance to their methods is due to patients' unwillingness to accept they are mentally ill, and that all objections are in bad faith. Further, I also think this explains a lot of the crapness of the research: if you genuinely think ME/CFS is down to the placebo effect of a false belief, that will blind you to the need to eliminate placebo effects from your trial design because the place is the treatment. Crapness, not conspiracy.
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This might have been true 25 or 30 years ago but I simply cannot see anyway that anyone with an intellect of a house plant or above can genuinely not had the curiosity to see what has happened to patients in the long term - the majority of ME patients do not get better.

I completely agree BPS researchers are used to an environment with extremely low standards. However, any researcher worthy of the name when challenged about low standards and hearing about ways in which standards can be improved should be interested in making sure their work is done to the highest possible standards. BPS research seems to constantly seek out the lowest possible standards they can get away with and run with those.

I agree social media has a lot of pile ons and poor behaviour. However that is the nature of social media, I'm afraid. I don't see why ME patients (or anyone else) should find poor behaviour acceptable but I don't see why ME patients behaviour online and elsewhere shoukd have to conform to some higher standard either.

As for journalists having a hard time, I am sure they do. Do journalists who write about climate change, immigration or any other topic where feelings run high get a lot of grief? You betcha.

I think the difference with ME is the narrative of angry, vengeful patients was around long before social media and the instant ability for people to immediately reply to an article via email. So, whereas with other stories journos expect some angry response because of the topic they're exploring, it's likely journos who write about ME are attributing the response to unreasonable ME patients rather than their coverage of a topic where there are lots of opposing opinions and feelings run high.

I would also point out that David Tuller had someone try to nobble his career, his credentials misrepresented and his integrity smeared. He reported those facts as they are without resorting to smearing all ME researchers, or even all BPS researchers.

Edit to break up a paragrap & spelling - also originally wrote journos with ME & corrected to journos who write about ME
 
I am probably repeating myself here, sorry.

I agree that the researchers may have started believing what they say but they have not acted in good faith for years. It might have been Chalder, one of the women, who was on an afternoon show where she said that people with cancer and heart disease accept CBT but people with ME would not. Shaking of heads.

Yet she knew that the CBT of ME is to convince people they are not ill while that for other diseases is supportive for those who feel they need help. Not to mention it is not the only treatment offered for other diseases.

So we were accused and belittled deliberately by someone who knew she was distorting the truth to induce a certain effect in the audience.

Just one example of hundreds which show these people are well aware of what they are doing.

It is just possible that they think that they have to lie to get us to take our medicine, in fact I think something like that was said explicitly at one point, but it is totally unacceptable.

We have seen the disasters when psychologists and psychiatrists have decided that they know best. Lobotomies and using ECT to make a clean slate of the mind to help anxiety may be the worst but even their lesser efforts have left disaster in their wake.

As we listen to the BPS busily denying they ever used GET where you carried on even if you felt bad we need not give them any benefit of the doubt.

Even those much further down the line who could be said to be trying to follow best practice as it is shown to them are not blameless. I like to think if I was using a treatment that patients claimed caused great harm I would at least ask the community about it.

The nurses in the FINE trial needed support because the patients were so against them. They complained about ungrateful patients but never stopped to ask why it was happening just accepted that people with ME are horrible. Totally unacceptable in a profession where you treat the handcuffed prisoner with the same care as the kindly old nun.
 
Regarding the claim that ME/CFS researchers are harassed, a great collection of quotes:
Lou B Lou said:
These quotes are from a Comment by Carol Binks (collated by Carol) to a Times article last year:



The ME/CFS Biobank:

“We do not comment on other's work except via academic publications, but are always happy to talk to the media, both about our own biomedical research and about the amazing kind community of #pwme [ME patients] who our nurses see every week, and who oversee our work through our Steering Group”



ME Research UK:

'Harassment of researchers'

“Our charity has been funding biomedical ME research studies for 17 years, and has supported projects in the UK and overseas. In that time none of our researchers has complained to us of campaigns of harassment, whether from patients or anyone else.
Robust individual exchanges of views may occur from time to time, but these are part of the terrain when people feel passionately about an issue; they may even be welcome as a valuable addition to the scientific debate”



Professor Chris Ponting, Deputy Chair of UK ME/CFS Research Collaborative stated publicly on 12/5/2019 (at #MillionsMissing Glasgow 2019)

“Can I state categorically that ME scientists are not being harassed by the ME community. We are listening to legitimate questions and concerns about science.”




Derya Unutmaz MD, Immunlogist, researches T cells:

“On the contrary, #MECFS patients are very supportive of our research. They provide us with great insights into this disease and even give new ideas. I personally learned a lot from the ME/CFS community. The interactions also provide us with the motivation we need – science is hard!”



Nicola Clague-Baker, Chartered Physiotherapist, 'PhysiosforME' org, has publicly stated:

“I am an #ME researcher and I have never been harassed by #pwme [people with ME]. I find #pwme the most helpful, informative, enthusiastic and caring people I have ever worked with”
@PhysiosforME



'The 2016 FOI Tribunal - QMUL v the Information Commissioner + Matthees (PACE Trial) - ruled that the assessment of 'ME activist' behavior was “grossly exaggerated” and that the only actual evidence was that an individual had heckled Professor Chalder at a Seminar.

These overblown claims of 'harassment' have been used for years by researchers who don't like their work being legitimately criticised, and subsequently by some journalists looking for a juicy story.'



'Sir, The announcement of a £3.2 million of funding for a genetic study into ME is a massive step forward, but until there is proper recognition among healthcare professionals that ME is physiological not psychological, and that graded exercise is harmful, those living with ME will continue to suffer at the hands of some well-meaning healthcare professionals.
Carol Monaghan, MP (SNP)
Chairwoman, All Party Parliamentary group on ME.
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