Trial By Error: And Another Prebuttal…

[Snow Leopard]

Thanks, I suspected as much.

So Reduced Reassurance is

aka Cognitive Restructuring

aka Brain Washing

No, "reduced reassurance" relates to the reduction of a specific behaviour, namely seeking reassurance during situations that generate anxiety.

In the context of health psychology, it would be about reduced seeking of medical opinions related to health anxiety.

 

[Snowdrop]

On the question of revolution Camus' description in The Rebel is worth recalling. The revolutionary merely wishes to replace the old-guard with himself and his friends. The rebel wishes to assert a change in values.

I was thinking something along those lines. And feeling whimsical.

Since the Thatcher days onward growing numbers of people in Britain seem to be needing health services. It cannot hold. Some clever sort comes along and says lets lump them all into on large category and lets not pander to this growing need but lets change/streamline the process. Brilliant they all cry. And the clever fellow sees a way of becoming BFF to all the important people and maybe even the Queen and King. And get invited to all their tea parties.

But there was another and different tea party afoot . . .
(this one is filled with rebels not revolutionaries)

 

[Andy]

MEAction's suggested response if and when we see this article, https://www.meaction.net/wp-content...tive_erroneous-press-about-ME-Feb.-2019-2.pdf

 

[MSEsperanza]

MEAction's suggested response if and when we see this article, https://www.meaction.net/wp-content...tive_erroneous-press-about-ME-Feb.-2019-2.pdf

https://en.wikipedia.org/wiki/Archive.today

 

[Barry]

Just a thought, @Adrian, is there any way to create a sub-forum where posts are hidden from the normal web-ratings mechanisms? I'm guessing not, but would be interested to know. It just feels like if we could not discuss anything in here then a kind of isolationism might occur. But to be clear, I do agree with MEAction's suggestion.

 

[Alvin]

MEAction's suggested response if and when we see this article, https://www.meaction.net/wp-content...tive_erroneous-press-about-ME-Feb.-2019-2.pdf

I agree to a point. If no one shares it and it buries itself that is a great result.

But if we don't share it but it gains traction on its own then we should switch to a different strategy.
The points mentioned are great and i would even refute it with the PACE suppression efforts that are being documented on the new MEPedia article (in addition to the ones mentioned here).

We should tailor our strategy to the situation for maximum effect.

https://en.wikipedia.org/wiki/Archive.today

After another article a while back where one of the references was deleted i had started a thread about backing up references to the Internet Archive. I think it was the prospective study that was cancelled once it became widely known. That one was luckily already archived and not lost but most are not.
I don't think we came up with a solution but with the new MEPedia article i archived what i could, but its not something i can do regularly and only a percent of what Dr Tuller references is being automatically archived.

https://www.s4me.info/threads/backing-things-up-to-the-internet-archive.3792/

 

[Andy]

Just a thought, @Adrian, is there any way to create a sub-forum where posts are hidden from the normal web-ratings mechanisms? I'm guessing not, but would be interested to know. It just feels like if we could not discuss anything in here then a kind of isolationism might occur. But to be clear, I do agree with MEAction's suggestion.

Members-only areas are not seen by Google, or any other search engine.

 

[Barry]

Members-only areas are not seen by Google, or any other search engine.

OK, then we could potentially discuss it that way then, unless there were other reasons not to. But strictly moderate any discussion in non-member areas.

Maybe.

 

[Trish]

Just a thought, @Adrian, is there any way to create a sub-forum where posts are hidden from the normal web-ratings mechanisms? I'm guessing not, but would be interested to know. It just feels like if we could not discuss anything in here then a kind of isolationism might occur. But to be clear, I do agree with MEAction's suggestion.

While Andy is right that the members only areas here are not able to be found on search engines, and are only visible to members, if you put a link in a members only thread to an outside site, like a blog, the blogger's stats will show how many times it has been viewed using that link here.

I found that out when I posted a link to my blog on a members only thread here. I can see on my blog stats not only how many times it was accessed from here, but also the name of the thread.

I assume the same may apply to media articles - the media company will be able to see how many times their article is accessed from here.

 

[chrisb]

@Andy I find that MEAction link rather strange. Is there any further context to it? It is not clear whether it is addressed to their members or whether there is some expectation that others will follow. It rather feels as though an anonymous group seeks to impose their views on all.

I do find all those capitalised "NOTs" rather unpersuasive.

Whilst there is, no doubt, some merit in the arguments propounded, there seems to be no indication of counter arguments or how the relative merits might have been judged. The points which are raised seem to cover a very narrow area of the possibilities for response, judging from what we have learned about the enquiries made.

We simply cannot know, in advance of publication, what the best response might be, but it must be assumed that there is some strategic or tactical purpose to influence opinion of people other than ourselves. It may well be that the response the author would most favour would be the absence of widespread criticism or rebuttal. Is there any reason to derogate to MEAction the choice of response?

 

[Andy]

@EspeMor posted this in the closed Facebook group, MEAction in the UK.

Hello all,

As you may have heard, it appears that a major news organisation in the UK is planning to publish an article about ME that is likely to be negative about the impressive work by David Tuller, DrPH that has exposed flawed ME research, and may also paint advocates with ME negatively.

The article has NOT been published yet so we don’t actually know its final content, however, #MEAction UK volunteers have been discussing our response to this article once published, and we feel that the best response is NOT to engage. We want to get across the message that this narrative is no longer worth our attention and that we are not going to promote it as valid by debating its blatantly erroneous premise.

We're sharing our strategy with the #MEAction UK community in closed groups - not a public announcement - to get the community on board with the goal to NOT give this article social prominence when it is finally published.

Please read more about this here:

and then a link to the above document. Other than this, I know no more.

 

[Skycloud]

Is there any reason to derogate to MEAction the choice of response?

MEAction aren't the boss of anyone and I don't think they're trying to be either.
As I see it each individual is going to make their own decision about any response, whether to join MEAction in this stance. People always do. However, I think the MEAction thingy is a useful contribution which might help some people decide what their response might be. I agree with it but it doesn't preclude other responses depending on what develops.

 

[Barry]

It's going to be really tricky, because I do agree it is always best to not feed trolls, which this will amount to. Unless there would be some way to dump the content elsewhere in a members-only area so accesses to it did not register. But that itself might be a tricky one.

 

[dave30th]

I really appreciate MEAction's suggestion that people be restrained in their responses, and that they focus on key scientific points debunking PACE and this body of research. My own feeling about the article, beyond the prebuttals I felt I should write, has been just to wait and see what it says, assuming it does appears. I can't specifically agree with the idea not to share it, since I have no idea what will be in it. It's possible what I wrote slowed the timeline or otherwise triggered some recalibrating, and it's possible it didn't. And you can never be 100% sure something will appear until it's actually published. My main concern is that any responses to the article--when/if it appears--be based solely on the science.

 

[chrisb]

Let us hope that the article, if and when it appears, restricts itself solely to the science. It can then be rebutted on the science.

There's a first time for everything.

 

[Alvin]

I really appreciate MEAction's suggestion that people be restrained in their responses, and that they focus on key scientific points debunking PACE and this body of research. My own feeling about the article, beyond the prebuttals I felt I should write, has been just to wait and see what it says, assuming it does appears. I can't specifically agree with the idea not to share it, since I have no idea what will be in it. It's possible what I wrote slowed the timeline or otherwise triggered some recalibrating, and it's possible it didn't. And you can never be 100% sure something will appear until it's actually published. My main concern is that any responses to the article--when/if it appears--be based solely on the science.

I agree with you but i think that list of PACE intimidations could be very valuable if the situation calls for it.

Let us hope that the article, if and when it appears, restricts itself solely to the science. It can then be rebutted on the science.

There's a first time for everything.

Prepare for the worst and hope for the best.
The tide has not yet turned, but it will eventually. Its only a matter of time but if we can help it along without causing backfire we should imo.

 

[TiredSam]

We have got pretty good at responding to such articles on the science and avoiding fulfulling the cliche of the rabid activist. Public utterances of the BPS brigade of late have usually been own goals which win us new friends, and if this article is another such opportunity there's no reason not to take it. Ranking on social media is only one factor, and not necessarily a negative one. I'd say the best strategy is to wait and see what happens and respond accordingly, keeping all options open until we've seen the article.

 

[Snowdrop]

We could here at S4ME if we agree, nominate a few people to have a look and see what's what when it shows up. that way the gist could be described without the rest of us having to go and look. I don't plan to connect to the link if it's just another assassination piece.

Though I expect that it's natural most people will want to judge for themselves though I appreciate MEaction's attempt to take a stand against mud-slinging press (should it prove to be such).

 

[Jonathan Edwards]

I think it may be quite interesting to see what lame arguments are raised. Whatever the piece says if it is criticising David it will be an own goal. Criticising a journalist for having said something that a founder member of Cochrane is now endorsing seems a pretty dumb thing to do. Investigative journalists are supposed to be ahead of the game. Doing so without doing due diligence in terms of sounding out relevant sources would add to the incompetence.

 

[Andy]

I think one potential positive response is to share accurate articles widely if and when this potential hatchet job comes out, as happened when the news of Sharpe trying to get articles "corrected" and/or retracted came out. The Julie Rehmeyer article in Stat, the Lubet one in The Conversation, any of David's blogs but particularly the open letters with hundreds of signatures, latest one to the Lancet here, and most recently, Hilda Bastian's blog.