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

fivetowns said:
Anyone know how to archive tweets? I've already made a screenshot of Sharpe's tweet. I think it might be useful reference for any IPSO complaints people are planning.
The tweet has already changed as Kate Stein has deleted her replies to Sharpe.

Edit: Made a mess of embedding the tweet
Edit 2: Made a mess of embedding again so took the tweet out of my post. I think you probably know which tweet I was on about anywho.
Edit 3: Correct spelling mistake.
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Could you make use of ThreadReaderApp?

https://techcrunch.com/2018/01/04/thread-reader-app-twitter/
 
rvallee said:
If CBT and GET worked, there actually would not even have been a need to develop them since the vast majority of us tried that naturally, in most cases pretty much the first thing we tried other than severe patients.
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Bang on. When my wife went to see a specialist we were lucky, because (I only much later realised) he had no hidden agenda, just doing what all clinicians are supposed to strive for - whatever is best for their patient. After spending a lot of time talking things through with my wife (she had already had the exclusions investigations done), he basically told us that there was nothing he could do because my wife was already doing what he would have advised anyway. He offered that advice very kindly and respectfully I would add. There is absolutely no doubt in my mind, that if ME could be cured by pwME pushing themselves hard but within sane limits, then my wife would have been fully cured a long time back. And from what I see from people here, she is pretty typical.
 
large donner said:
Surely paranoid psychosis is a symptom of a neurological condition. Just as you alluded to in a post early today about chronic fatigue not being a diagnosis isn't the same true in the example of paranoid psychosis?
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I think the mistake is to think that a condition is either psychiatric or neurological. By definition all psychiatric conditions are also neurological.

And paranoid psychosis is not a symptom. It is a recognised pattern of disordered brain function manifest as patterns of behaviour, just as diabetes is a recognised pattern of metabolic dysfunction. In the absence of any known neurological basis it is treated pragmatically in terms of the pattern of dysfunction. And it is the diagnosis, in as much as 'a diagnosis' is a clearly defined category. The symptom (or sign), if you like, is paranoia and paranoia also occurs in dementia and other contexts.

You make fair points though and I guess the ultimate message is that all these concepts are slippery. We just have to be careful not to use them in ways that do not help.
 
If CBT and GET worked, there actually would not even have been a need to develop them since the vast majority of us tried that naturally, in most cases pretty much the first thing we tried other than severe patients.

I also think this is very cogent. One thing PACE probably tells us (and SMILE) is that whether or not any of these approaches help, it does not matter a jot which way you do it. So it seems pretty certain that people could have done it for themselves.
 
Cheshire said:
But that does not change anything to what I said.
"Because ME sufferers have been hurt by a bunch of bad psychiatrists, that doesn't mean we should throw the baby with the water. For many, many patients, psychiatry has been a life saver."
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Absolutely. It is, as always, far too easy to tar everyone with the same brush, when many are truly decent dedicated and highly competent professionals. I would have thought they might find much of this deeply embarrassing, or at least will one day once the realise what is going on.
 
JaimeS said:
Yes -- and that's why we said in the letter that it isn't about "mental vs physical" but about "good science vs poor or misleading science". Jonathan E is right to say that it's common to frame the argument in the first way, but I argue we should not.

Mental illness is embodied. It has physical signs & symptoms. (Yes! It has cytokines, NKC effects, stuff that shows up on brain scans.) So to say a mental illness contrasts with a physical one is imprecise bordering on incorrect.

I also fear when we use this argumentation that we are attempting to be seen as "good patients" with "real problems" -- as opposed to those "bad patients" with "no real problems". But patients with mental health issues have a real illness. And I don't like the ethics of booting another patient group under the bus, and more pragmatically... it's a bad look for us.

Let's stick to "treatments based on those philosophies don't work" (true) "there are no long-term effects on follow-up or people are actually worse off" (true). "The data had to be fudged to make it appear to work". There is a lot we can say before we say "but our disease is real".

[Edit: I was replying as I read the thread; I see a lot have said basically this. Can we shift this narrative as a group? People follow an example. And yes, I've been asking #MEAction folk not to frame it this way as well.]
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For me it is really not complicated. Applying clinical treatments to an illness, on the basis that it is a different illness (deconditioning perpetuated by unhelpful beliefs, in our case), is just plain wrong, full stop. Anything else is just a distraction from this.
 
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JaimeS said:
I also fear when we use this argumentation that we are attempting to be seen as "good patients" with "real problems" -- as opposed to those "bad patients" with "no real problems". But patients with mental health issues have a real illness. And I don't like the ethics of booting another patient group under the bus, and more pragmatically... it's a bad look for us.
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100% this. Also, if we give the impression of stigmatising mental illness it opens us to the charge of opposing BPS-based treatments because we ourselves don't want that stigma. There should be no stigma or shame in mental illness; my objection to BPS approaches is solely due to lack of efficacy. If, for example, somebody demonstrated tomorrow that anti-psychotics would remove all of my ME/CFS symptoms, I'd neck them like candy and be thrilled doing so.
 
What on earth is going on?

Dr Mark Porter now has a piece in The Times: https://www.thetimes.co.uk/article/...ue-syndrome-is-a-complicated-matter-28f7xcsgt

Anyone fancy a game of whack-a-mole?

I've reached my article limit, so can't access it.

Treatment for chronic fatigue syndrome is a complicated matter

Few terms are as emotive as chronic fatigue. Those complaining of it often feel marginalised and labelled. Their doctors, in the absence of an easily identifiable and treatable cause, feel impotent. Scientists are wary of studying it for fear of invoking a backlash from those who disagree with their findings and conclusions. And, as I have learnt, anyone writing on the subject needs a thick skin to cope with the feedback.

Little wonder that chronic fatigue has become an area around which everyone — with the exception of those affected — tiptoes. However, it’s something that I cannot avoid in my day-to-day practice. It is a very real and common complaint that can exact a considerable toll on those affected, and one that requires a caring and…
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What a bland article written in a well-meaning but clueless tone. Doesn't distinguish between chronic fatigue / chronic fatigue syndrome. A few excerpts to give the flavour:

If you think you are missing something, the next step is invariably more investigations and/or referral to specialist colleagues such as rheumatologists. Another is to consider a psychological cause.
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At the end of the investigative process there will be many patients who will be left without a clear explanation, or a diagnosis such as ME. However, labelling someone in itself isn’t much good unless you can offer them a clear, evidence-based method for alleviating their symptoms, and herein lies the problem.
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However, I am concerned for the future. Prominent researchers, such as Professor Michael Sharpe of Oxford University, have left the field because of what they describe as internet stalking and toxic trolling. Some ME campaigners might regard that as no loss, but it’s the impact on the next generation of scientists that worries me more. If they are put off tackling the challenge, how are we going to make progress?
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● Regular rest is important. Try to have five minutes’ rest every hour throughout the day. Don’t doze, just lie down and chill out (reading or watching your favourite TV programme do not count as proper rest).

● While it may be tempting to lie in if you feel tired, too much sleep can prolong chronic fatigue.
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Ok, I'll try to have five minutes' rest every hour, and avoid the temptation of having a lie in if I feel tired. Thanks.

I hope an article worth reading doesn't turn up in the Times this week because I've used up my two free articles now. Somehow I don't think it's going to be a problem.
 
So according to Mark Porter anyone writing on the subject needs a thick skin to cope with the feedback. Ye Gods!* How are all these people so unaware, so satisfied with pontificating about subjects on which they can't even be bothered to find out more. And it's not about them and their thick skins or lack of them! Nobody, not one journalist has bothered to talk to anyone except Sharpe and people on his safe list.

* I'm fumbling about in the very bottom of the swear bag to avoid being moderated. eta din't know ye gods was in there!
 
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