More from Science Medica Centre on SMILE

[Jonathan Edwards]

I was really surprised and sad to read this. I must be hanging out in different places because I've never read a bad word said about you. You could always disable comments if you were concerned about negative reaction – although I had always got the impression that you were fairly immune to such things. I can't believe that you've not come under some pretty intense intense fire from the BPS artillery.

It is saddening but there are people in the ME 'advocacy' community who say obscene things about anyone who does not like their pet idea. Some of the xmrv brigade could be pretty unpleasant and there are others hurling insults on other sites as I write, I suspect. In contrast I have never had any abuse from the BPS crowd, except to the extent that I am presumably included in the anonymous category of 'climate change deniers' or 'borderline psychopaths'. I am completely immune to any of this but David Colquhoun may have felt his time was wasted on the sort of people who I have had insults from.

 

[Jonathan Edwards]

[


Jonathan, can you be sure these negative responses are from PWME and not trolls stirring up the vexatious ME brigade meme?

They are definitely from people who believe they have ME. Some of them used to be on PR. Pretty much all of them have gone, although there seemed to be some suggestion that they might be invited back recently.

 

[Invisible Woman]

....and I've heard it said that we're a tough crowd

ETA - crossed with Jonathan's last post.

 

[Wolfiness]

Jonathan, can you be sure these negative responses are from PWME and not trolls stirring up the vexatious ME brigade meme?

Oh please. We aren't saints. We have our fair share of bruisers. I just wish people would recognise it as justified desperation.

 

[Wolfiness]

Re Colquhoun, no one is asking him to contribute to ME research. I was asking him to contribute to quackbusting. Maybe start with the £5m white elephant in the room or indeed SMILE because if this was any other condition, from anxiety on downwards, people would be saying, "Hang on, NLP?!"

 

[Jonathan Edwards]

I just wish people would recognise it as justified desperation.

In many cases I agree, but in some cases it is just plain malice I am afraid - same as anywhere.

 

[Jonathan Edwards]

I've just checked on Twitter and Im also blocked by David Colquhoun. I never followed him, never tweeted him and have had no interaction at all that I ever remember. It seems like he is probably trawling hashtags and blocking lots of PWME. Idiot

Do you think this is an indirect effect of some general protection mechanism he has employed that has nothing to do with PWME in fact?

 

[Luther Blissett]

I'm not on twitter, but I believe there are mechanisms for blocking people that involve blocking all their followers as well.

So, you can be blocked without ever having interacted with someone, especially when this method is used as a time saver.

It doesn't mean that you have upset someone personally, just been caught up in a rough and ready way of making twitter usable.

 

[Stukindawski]

Oh please. We aren't saints. We have our fair share of bruisers. I just wish people would recognise it as justified desperation.

Anyone with a keyboard can comment and make posts about ME/CFS, patient or otherwise.

Everything is controversial on the internet and everything is public. I think a lot of people deeply embedded in Scientific and Journalistic careers have experienced a culture shock because the level of access the general public has to what they are doing has increased exponentially and redefined their careers to include a much heavier public relations workload.

The world has changed from where the patient would have to subcribe to medical journals and write letters by hand to have any level of interaction with Scientists.

It's not really an MECFS issue, it's a now issue.

 

[Wolfiness]

In many cases I agree, but in some cases it is just plain malice I am afraid - same as anywhere.

Exactly, same as anywhere. I think we have an average amount of malicious idiots and a higher than average amount of desperate clamouring. Probably exactly the same as any other marginalised and oppressed minority.

 

[thegodofpleasure]

Added a comment to the blog (waiting for moderation), with the hope it might cause some more curious readers to have a look around after the excellent comment from 'scary vocal critic.'

Don't hold your breath @Luther Blissett the SMC don't seem to be in any hurry to publish comments on this article.

My comment still hasn't passed moderation over 24 hours after I posted it:

Fiona Fox says:
“Our remit is to encourage and support good scientists to speak out openly and honestly about science in all its guises including the uncertainties, mistakes, poor standards, changes in evidence.”

and yet, in the case of the PACE trial, the SMC has (to date) sided entirely with the trial’s investigators in the face of what has proven to be entirely justified criticism. Even more, they have propagated a false narrative about intimidation and death threats towards ME/cfs researchers which has ramped up the toxicity of the debate. After such claims were exposed as being grossly exaggerated (by none less than the Information Commissioner) their failure to correct that wrong speaks volumes about the bias in SMC coverage of the topic.

Fiona Fox also writes:

“We are pro science, pro evidence and pro the scientific method. If a good quality, well-designed study were published, which overturned previous findings on any of these subjects the SMC would publicise it with the same enthusiasm as ever.”

but anyone who has followed the progress of biomedical research into ME/cfs (as I have) will tell you that this is patently not true.

Ms Fox’s piece carries all the hallmarks of a rallying call to friends to run to the defence of a sinking ship. I hope the damage is terminal.

 

[Esther12]

Don't hold your breath @Luther Blissett the SMC don't seem to be in any hurry to publish comments on this article.

My comment still hasn't passed moderation over 24 hours after I posted it:

People can tell me off for being too critical about everything, but I'd be cautious on some of this stuff, eg:

Fiona Fox says:
“Our remit is to encourage and support good scientists to speak out openly and honestly about science in all its guises including the uncertainties, mistakes, poor standards, changes in evidence.”

and yet, in the case of the PACE trial, the SMC has (to date) sided entirely with the trial’s investigators in the face of what has proven to be entirely justified criticism. Even more, they have propagated a false narrative about intimidation and death threats towards ME/cfs researchers which has ramped up the toxicity of the debate [we can't know that there were never any genuine death threats or intimidation, although it seems clear that legitimate actions by concerned patients were being wrongly presented as part of a campaign of 'harassment' and 'abuse' - 'exaggerated' may have been better than 'false']. After such claims were exposed as being grossly exaggerated (by none less than the Information Commissioner) [it was an Information Tribunal ruling which stated claims were grossly exaggerated, although the Information Commissioner's legal representative was also very critical of how 'activists' were portrayed] their failure to correct that wrong speaks volumes about the bias in SMC coverage of the topic.

I think that it's often best to claim less rather than more, especially when so much important evidence is on our side, although I know I can often slip into posting too loosely... especially after reading something as irritating as that blog!

It is saddening but there are people in the ME 'advocacy' community who say obscene things about anyone who does not like their pet idea. Some of the xmrv brigade could be pretty unpleasant and there are others hurling insults on other sites as I write, I suspect.

There were a few people who went a bit loopy about XMRV. I'd assumed that they'd realised they were bad at thinking, and so faded away to just watch TV or something.

The harm that can be done to advocacy efforts by just a handful of idiots is annoying.

There was one person who went around everywhere posting that 'ME/CFS is HIV- AIDS', and even though it was just one person doing this, I saw 'skeptic' sorts making snide comments about how the ME community were now obsessed with the idea that they had HIV- AIDS. Grrrr.....

 

[Daisymay]

Oh please. We aren't saints. We have our fair share of bruisers. I just wish people would recognise it as justified desperation.

I never said PWME were saints, it surely goes without saying any group would have it's fair share of "bruisers".

 

[Daisymay]

In many cases I agree, but in some cases it is just plain malice I am afraid - same as anywhere.

I'm sorry you, or anyone has had to deal with any aggro but as you say, it's unfortunately the same as anywhere, not specific to PWME.

 

[Snowdrop]

Oh please. We aren't saints. We have our fair share of bruisers. I just wish people would recognise it as justified desperation.

When I belatedly set up a twitter account I followed many people with ME. I know from here and from twitter the type of communicating being described. And I do agree with above. I completely sympathise with their plight, fear, desperation. I know where it comes from. But I also think it needs to be reigned in. It is counterproductive. I stopped following them. Venting is one thing but eventually you need to pull yourself out and engage in a way that will actually help produce the results we so desperately desire.

 

[Large Donner]

I'm not on twitter, but I believe there are mechanisms for blocking people that involve blocking all their followers as well.

I have one of those for facebook and twitter, its not that technical it just involves NEVER GOING ANYWHERE NEAR EITHER OF THEM!!

 

[Sean]

I think this probably is the best we can do. I agree with David. There is some good science but very little and mostly with negative results. We really do not know where to start.

Is the problem here a failure of imagination in the medical research community? Or is it a failure to fund enough physiological research to generate hypotheses?

(No disrespect to those researchers doing the best they can in a very hostile funding and political environment.)

 

[Barry53]

Added a comment to the blog (waiting for moderation), with the hope it might cause some more curious readers to have a look around after the excellent comment from 'scary vocal critic.'

Interesting. So Scary vocal critic's comment must have got through moderation too.

 

[Barry53]

Oh please. We aren't saints. We have our fair share of bruisers. I just wish people would recognise it as justified desperation.

No, I think you may be missing what is being said here. People in desperate situations, as so many PwME are, will and do say some pretty desperate stuff sometimes, that will no doubt get pretty bad sometimes. But there are others who go beyond that, and just get downright vile and deeply deeply abusive which normal people don't resort to no matter where they are at.

 

[Jonathan Edwards]

Is the problem here a failure of imagination in the medical research community? Or is it a failure to fund enough physiological research to generate hypotheses?

(No disrespect to those researchers doing the best they can in a very hostile funding and political environment.)

The problem is that ME is very very difficult to crack. There are no leads of the sort there are with other diseases. But harder problems become tractable when you have practice with easier ones. There needs to be a shift of gear that involves clearer hypothesis making and more careful methodology. It is happening, but like everything in science, people have to struggle to get something new done. New things can be done with virtually no money if you are not tied down by bureaucracy, but the current environment is very bureaucratic. Swings and roundabouts as they say.