More from Science Medica Centre on SMILE

[TiredSam]

“It’s safer to insult the Prophet Mohammed than to contradict the armed wing of the ME brigade”

When @charles shepherd said on the radio recently that the trial should have been conducted on patients with three arms, it did occur to me that this might be open to misinterpretation, but once again the SMC have excelled themselves by deliberately misrepresenting what patient advocates have been saying.

It would be easy to test the above quote by publishing cartoons of M.E. patients in a Danish newspaper, then standing back to see what happens. I'm sure Wessely could provide a few caricatures, before retreating into his bunker with his finger on the panic button. And when nothing happens, he could write in the press about how he spent time in a bunker with his finger on the panic button because of his work in the field of M.E. which he retired from years ago.

Pity he didn't retire from publicly soiling himself about nothing years ago.

 

[BurnA]

I would not blog about ME. I am afraid David is right, judging by the sorts of comments directed at me on other forums. But one can approach the problem other ways.

Yes I agree too.
But if he sticks to exposing the bad science he will get a lot of support.

Coyne manages it because I guess he just doesn't care about it. And he seems to be a viper at times himself so maybe he feels at home.

If he just goes for easy targets, can't see beyond the vexatious patient myth and doesn't want to grow some I find his tweets difficult to get excited about to be honest.

Yeah I think he only got involved now because the LP is another easy target.

He also seems to be trotting out the same line that nobody knows a thing about ME.

Maybe he should be invited to the next iime conference to educate himself. Or maybe he should take a short walk around UCL campus and meet Jo Cambridge and Fane Mensah.

I know the science might be scarce but to say nobody knows anything is wide of the mark.

I don't know if it's worth having another go trying to get him involved.

https://twitter.com/i/web/status/914893742951342080

 

[TiredSam]

Clutching at straw men perhaps.

 

[Orla]

Yes I agree too.
But if he sticks to exposing the bad science he will get a lot of support.

Coyne manages it because I guess he just doesn't care about it. And he seems to be a viper at times himself so maybe he feels at home.



Yeah I think he only got involved now because the LP is another easy target.

He also seems to be trotting out the same line that nobody knows a thing about ME.

Maybe he should be invited to the next iime conference to educate himself. Or maybe he should take a short walk around UCL campus and meet Jo Cambridge and Fane Mensah.

I know the science might be scarce but to say nobody knows anything is wide of the mark.

I don't know if it's worth having another go trying to get him involved.

https://twitter.com/i/web/status/914893742951342080

I tweeted him a bit today and he said he is too busy right now but might do something in a few weeks.

 

[Sean]

Nobody knows where to start so clutching at straws

Really? This is the best modern medical science can do?

Well it would explain a lot.

 

[Luther Blissett]

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.'

 

[Wolfiness]

What would happen if we had a preliminary stage of peer reviews blinded-to-disease? So when you reviewed a trial you took out all the disease-specific cues you could and had people assess only its methodology and conduct as a trial?

 

[Jonathan Edwards]

View attachment 24201

Really? This is the best modern medical science can do?

Well it would explain a lot.

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.

 

[Jonathan Edwards]

I tweeted him a bit today and he said he is too busy right now but might do something in a few weeks.

He might take the SMILE bait. I might get on to him again and see if I can get him interested.

 

[BurnA]

There is some good science but very little and mostly with negative results. We really do not know where to start.

Not even where to start?

I would have thought there are enough clues by now.

Even in the absence of a conclusive place to start, playing video games is unlikely the best place to look.

 

[Jonathan Edwards]

Not even where to start?

I would have thought there are enough clues by now.

I am not sure that any of the clues are robust enough to be sure they will lead to an answer. Many of the proposals we are seeing reflect uncertainty in that they are essentially ways of measuring everything - metabolites, viruses, gut bacteria, antibodies, T cells, brain connections, genes, cytokines.

Thatsaid, I think David may not have dipped in to ME for about five years and may be surprised to see how much better the focus on the problem is.

 

[slysaint]

I am not sure that any of the clues are robust enough to be sure they will lead to an answer.

What about the 'rogue' molecule Ron Davis' team found in the serum?
Are any other scientists trying to identify it/replicate the finding?

 

[Jonathan Edwards]

What about the 'rogue' molecule Ron Davis' team found in the serum?
Are any other scientists trying to identify it/replicate the finding?

Did he find a rogue molecule? I thought various differences were found that needed replication.

 

[slysaint]

Did he find a rogue molecule? I thought various differences were found that needed replication.

around 24:00 to 26:00

 

[JoanDublin]

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

 

[Large Donner]

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.

Sometimes this notion comes from the false premise that:

1 person labelled with ME = 1 person fully tested for all other known conditions causing their given symptoms.

It doesn't.

Its not just the disappearance of a disease called ME under the spurious "CFS" label, its the growth of the brand "CFS", which is often a catch all for an under investigated patient.

When it goes on from there to subjective, badly designed trials, on weakly defined cohorts and then extrapolates the conclusions to anyone with a CFS label, that's a major avenue that could be exposed in itself.

 

[Large Donner]

David Colquhoun @david_colquhoun
well that's one of the problems. There is tons of bad science, but very little good. Nobody knows where to start so clutching at straws

When the bad science is quackery and the quackery is forming policy and the patients are telling you it makes them worse what's stopping skeptics from publicizing that. I'm talking about the PACE trial as well as LP.

We don't know how to fix broken spinal cords but if homeopathy or faith healing or CBT or GET claimed to be curing paraplegics and then it formed health policy would it be worth challenging or not?

 

[Robert 1973]

I would not blog about ME. I am afraid David is right, judging by the sorts of comments directed at me on other forums. But one can approach the problem other ways.

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. I've always considered you to be something of a rock star in the ME/CFS world, and I would be delighted if you were to blog about ME/CFS. You could always disable comments if you were concerned about negative reaction – although, judging by your comments on here, 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.

 

[andyguitar]

This is a good thread. Regarding what NICE, Dr Crawley et al are up to: They are on the back foot now. There is a lot of good evidence to use against them and get a better deal for people with ME. BUT there is a significant problem in that ME is included with CFS. It is not the same thing and this point needs to be hammered home. Constantly.

 

[Daisymay]

[

I was really surprised and sad to read this. I can't believe that you've not come under some pretty intense intense fire from the BPS artillery.

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