'Denialism: what drives people to reject the truth' by Keith Kahn-Harris

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I am not at all disturbed about what he wrote. Not at all. None. He is allowed his disease experience and he doesn't have to frame his disease experience exactly how you experience it. He probably took backlash for what he wrote from patients that can't let anyone have thoughts or experiences that are not exactly like theirs. But he wrote nothing wrong or untrue especially for someone mildly impacted. He doesn't have to come here and join the brigade. Writers feel a lot and guess what, one does learn a lot from being ill. Shame it happens but it is true.

If you want someone to start understanding YOUR disease experience, get your book published. And I don't like not wanting people to feel they can't speak about their experience and not still feel welcome by us. Which clearly he doesn't. And you know what, if I was still mildly impacted I would express my experiences the way I wanted to. And I would not want to have to express your disease experience. I have noticed that no one wants to accept those who are mildly impacted and perhaps meet the IOM criteria only because they are not sick like modestly or severely impacted. What happened to him in 2008, I assume, is patients went after him and he still isn't over it. And here you have a widely published writer that could be writing about ME/CFS and who got a whole lot exactly right and you have "issues" with how he expressed himself in a couple of lines. He didn't promote exercise or CBT and came out against it and psychiatry running the disease.

I don't think he was hinting there was a stress model to ME. I think he was trying to reach people that are impacted by life's ups and downs and are then physically impacted but the physical impact is what he always feels no matter what. I read it differently and I believe correctly. He also expressed the idea that life stresses do impact him physically because that happens when someone has a disease, the disease itself can become worse. It isn't the MIND controlling the symptoms and he never said that. He was actually saying how LIFE impacts healthy and sick people.

And you want everyone to call it ME but you don't want them saying anything that isn't severe ME. I think a lot of modestly and severely impacted patients are in denial that the mildly impacted exist and have a different disease experience yet he has the same disease. MS patients all understand one another, caretakers and family of Autism and Asperger patients all understand one another, all the different types of breast cancer and types of ovarian cancer patients all understand one another. My disease experience with ME/CFS is that there isn't allowed to be different experiences and voices telling them unless it is over tv programs or how patients like their pasta cooked.

Or did I read you wrong and get the wrong idea from your carefully crafted post that I should not have read anything more into.

 

I think this articulates a lot of good points. We do seem to tear each other down a fair bit, more than other patients communities.

I didn’t interpret anything untoward in what he said. I’m not sure why there often seems a need to be relentlessly puritan about this kind of stuff. Every patient is entitled to their own experience.

 

Yes. As long as he didn't claim to speak on behalf of the whole ME patient population, which he didn't, I'm ok.

 

Oh god, the woman looks uncannily like a certain scientist.

 

Totally agree.

There's absolutely nothing wrong with wanting to extrapolate meaning from the experience of illness. Personally, I do think there is meaning to be found and it will be different for different people. I actually agree with what he wrote, but even if I didn't, so long as he's not being offensive or untruthful then that's fine with me.

I think it's really important that everyone is allowed to express their illness experience freely and that we don't shut down people who don't speak in the same terms as us. Shutting people down is what Prof Sharpe does and I hope we can do the opposite and encourage an open and free dialogue.

(Btw, @Robert 1973 not saying that you shut him down - I think you were very polite and open and I'm glad that you reached out as you did! I just want to respond to the discussion about speaking our experiences).

 

It would have been interesting to see Dr. Kahn-Harris take on denialism in the ME domain, since it's a kind of interesting dynamic--use of the accusation of denialism as an offensive weapon. The ones charging denialism are the anti-scientific denialists, who are the scientists themselves. But I can understand why he might have stayed way from it.

 

I don't think that was my point at all. The lines I quoted weren't about this person's disease experience. Those lines hinted at a possible view about MECFS causation which might not be helpful to us from an advocacy point of view. That was the concern here, and I mentioned it when I did because folks were getting excited about engaging this writer in advocacy.

It wasn't clear, I could have misinterpreted. All I did in that post was to share my unease at a few lines. I wondered if the lines were hinting at the idea that MECFS is a symptom of the stresses and strains of modern living, and that people need to take a step back from their busy lives to avoid getting sick? To me, that's an unhelpful model of MECFS from an advocacy point of view. Just as is the model that we become fearful of exercise and deconditioned and need CBT/GET to reverse the process.

Noone was saying that this author should be silenced, or had no right to express his views. There are plenty of voices out there that consider stress an important factor in our disease (including patients past and present), and I would never wish to silence any of them. But some of them I wouldn't want to actively promote as voices in advocacy.

 

I question those who say there is no proof that there are people who refuse to accept that there are skeptics who don't believe in denialism.

 

Generally or specifically?

 

It could one, or the other... or both. But I'm not locked into that.

 

You win the internets today, sir.

 

It could be read like that, I agree. But I understood it differently for instance.

One of my first thoughts was, after getting the diagnosis, that ME challenges the belief system of today: Work hard, earn good money, get up early, don't sleep too much (because otherwise you're lazy), push through, find a fulfilling job, be active etc etc.

ME forces you not to do it. It forces you to listen to your body and respect your limits. It goes against nearly everything that many people value. Maybe, some people are even envious: there is a majority who doesn't view their job as fulfilling; they would like to have an excuse for not having to work, too.* (I don't say that's what I think, and ME certainly is nothing worth of envy. But people normally don't link disability, isolation and poverty to ME; they would in case of HIV/AIDS I think although today, HIV/AIDS treatment is much better.) That's maybe another reason why people with ME are discriminated, maybe even more than other sick people.

So ME could teach society to question widely held values.

*Edit: This doesn't mean I critisize that, to the contrary.

 

"So ME could teach society to question widely held values."

Yes, for sure.

 

ME forces you to step back from life's stress, because this stress can worsen ME. Even if you like a certain kind of stress. It is the same with other diseases, most get worse under stress (at least temporarily). That's not saying stress is the cause of ME - although I know the BPS group does so. (As many know, I don't believe in this BPS model or other such things, so I can't ever mean the psyche causes ME.)

With ME you have to create another life, a life that is very different to the lives of many other people.

ME makes you think (as do many other diseases, too, maybe). That is quite normal. Although I know there are people who don't start thinking philosophically when getting a chronic disease; that's also normal.

That's just my personal experience.

 

and wearing a blue gilet too

 

Unfortunately, you seem to have made a number of inferences which do not reflect my views. If that was my fault for expressing myself badly, I apologise.

I hope that posting on this forum helps us all to understand each other’s experiences. As it happens, my book was published in 2003. Since then I’ve written a number of articles and letters about ME, including those published in The Times, Nature and The Lancet this year – all of which have been discussed on S4ME.

I agree.

Not true. I am not at all attached to the ME label (see: https://www.s4me.info/threads/micha...hnthejack-on-twitter.3464/page-102#post-87766) and I would never seek to silence anybody, regardless of how their views or experiences may differ from mine. Similarly, I hope that your post was not intended to silence me.

I don't have enough knowledge to know if that's true or not, but I suspect things may have been very different when women with MS were being diagnosed with "female hysteria".

Nor should you have to, but I hope you would agreed that we all have a duty to be mindful of how our words and actions may impact upon others.

I can't speak for anyone else, but please be assured that I am in no way sceptical or unsympathetic towards people who are mildly affected, and I apologise if my comment implied such feelings. This forum has greatly helped my appreciation and understanding of those who are affected in different ways to me, and I fully concur with those who have suggested that “mild” is a inappropriate and misleading description of the level of suffering and disability that many people endure.

However, that does not detract from the fact that it has been a frequent source of frustration and concern to me that so often people seem to misunderstand how I am based on what they have read or heard about or from others. Again, that is not to try to silence anyone or to invalidate anybody else’s experience. It is merely to acknowledge that people with the same diagnosis can be affected differently, and that it is important for us all to try to acknowledge and understand those differences.

In addition to the uncertainties I expressed in my post, there was much that I agreed with in Dr Kahn-Harris’s article. I would be surprised and concerned if he was upset or offended by anything I have written. There has been a small number of occasions when I have been quite deeply hurt by hostile comments I have read in response to things I have written (not on here) and I would hate to be guilty of any such insensitivity myself.

Thank you!

Absolutely.

On further reflection, I’m not sure that we know enough to know if this is true or not. It may be that there is a continuum, and that the point where the illness is defined is a point on that line (as with type 2 diabetes).

I question those who question those who say there is no proof that there are people who refuse to accept that there are skeptics who don't believe in denialism, but I will defend to the death your right to question them!

 

August 19 CBC radio interview with Keith Kahn-Harris:

https://www.cbc.ca/radio/thesundaye...y-so-many-people-practice-denialism-1.4788057

I understand Kahn-Harris' theory to be describing what humans do in many circumstances. He says it's not always acceptable in our modern society to reveal what our real motives are for doing something, so we create a whole new science to deny the truth, and deem as good, what we are doing. With this new "science", we can deny the truth about the situation, group of people etc.

This "science" also serves to rationalize the behaviour for those who have developed it: drinking one's own bathwater.

For example, our real motive may be hate, or greed etc. Instead of telling others that, we create a whole story or science about the situation, other group of people etc., in order that we can do what we want. Another example, "people with cfs are the undeserving sick". Propagating the myth they are malingerers, benefit scroungers, layabouts etc.