"Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

[Yogi]

For linking to stories without giving the traffic, I'm not completely sure if this works, but if you archive a page at http://archive.is/ , you are then given a link to share the snapshot created.

I've just tested it on the bbc article. http://archive.is/T1vgy

It's also a good way of capturing pieces before they disappear.

It's very simple to do, just put the address in and then click 'save page', some 'magic' happens and you can choose 'share' and get a link for sharing.

If it works, we can always set up a thread outlining how to do it for others.

Many have been archived at webarchive. Lots of professionals used this.

https://web.archive.org

What is the difference/advantage of the other one?

 

[Yogi]

(It's also why, if I see a tweet/report about ME/CFS that is wrong, I tend not to respond if there are already a couple of well-argued responses underneath. I do sometimes wonder whether it's counterproductive to share 'look at this wrongness'-style tweets because, IMHO, it sometimes looks worse if thirty people respond than if just a few do)

I beg to differ. You cannot expect people to be abused and them keep quiet.

See also my post above of avoiding clicking on clickbait articles.

This is how David Tuller became involved due to number of responses to his article querying the pace fraud.

You need to kick up a fuss.

Educate them about gaslighting at same time. Sometimes banging your head against the door you get lucky.

As the they say the Squeeky wheel gets the oil!

'Why ME patients are critical of the PACE trial'

http://www.meaction.net/wp-content/...atient-view-of-the-PACE-Trial-Controversy.pdf

The Hidden Battle For The Rights Of Chronic Fatigue Syndrome Sufferers
https://theestablishment.co/the-hid...ue-syndrome-sufferers-cd20bef0f13a#.nz06llmkn

 

[BurnA]

A chum of Simon Weasely pours scorn on SMILE & LP (not normally a friend of PWME in the past)

This is interesting - I didnt realise he is a fried of SW.

This saga could really end up backfiring on the BPS.

There isn't a sane scientist who would support the LP and I am sure plenty of the anti-pseudoscience brigade will be inclined to speak out against it. Pseudosciece harms everyone, scientists even much so.

I think it should be very easy to get quotes from scienctists on this.

 

[user9876]

BMJ coverage from Nigel Hawkes (presumably terrible) is behind a paywall and not up on sci hub yet: http://www.bmj.com/content/358/bmj.j4372

I assume he will say that ME patients murder researchers. He seems one of the worst and the BMJ make a point of hiring him to comment on ME and spread hate of ME patients. What happened to the BMJs commitments to patient participation.

 

[TreePerson]

(It's also why, if I see a tweet/report about ME/CFS that is wrong, I tend not to respond if there are already a couple of well-argued responses underneath. I do sometimes wonder whether it's counterproductive to share 'look at this wrongness'-style tweets because, IMHO, it sometimes looks worse if thirty people respond than if just a few do)

I agree it becomes counter-productive. That is such a strong simple dignified statement from Solve ME/CFS. If only all the charities would come together and put out something similar - a strong unified clear statement. I think it would make a huge difference.
Movements need a clear message and leadership.

 

[user9876]

This is interesting - I didnt realise he is a fried of SW.

This saga could really end up backfiring on the BPS.

There isn't a sane scientist who would support the LP and I am sure plenty of the anti-pseudoscience brigade will be inclined to speak out against it. Pseudosciece harms everyone, scientists even much so.

I think it should be very easy to get quotes from scienctists on this.

I think some are feeling confused because they feel they should support SMILE as it shows what they think about ME patients but they don't want to be seen to support the obvious pseudo science. I suspect they will hide behind claims its an RCT but without questioning the methodology.

 

[Esther12]

(It's also why, if I see a tweet/report about ME/CFS that is wrong, I tend not to respond if there are already a couple of well-argued responses underneath. I do sometimes wonder whether it's counterproductive to share 'look at this wrongness'-style tweets because, IMHO, it sometimes looks worse if thirty people respond than if just a few do)

I can see it either way. UK journalists do seem to be pretty appalling at dealing with criticism, but it's not like all comments from patients are consistently amazing. Maybe the more good, cautious and rigorous ones the better? I'm not sure tweets are the best form of communication, but then, I'm not great with brevity.

 

[TiredSam]

In case you (& I) missed it

A chum of Simon Weasely pours scorn on SMILE & LP (not normally a friend of PWME in the past)

https://twitter.com/i/web/status/910767269470457856

Andy Lewis produces the Quackomter blog:

http://www.quackometer.net/blog/about

Worth a look if you are interested in medical quackery

CS

Haven't we already got a chum of Wessely doing this? Ben Goldacre calls himself a quackbuster and has made a name for himself going after soft targets like homeopathy etc but won't touch PACE. How is this Andy Lewis guy any different? I admit I've only looked briefly at his website, but he seems like just another self-appointed quackbuster going after easy targets. LP is an easy target, but it doesn't mean he's about to turn on his chum Wessely.

EDIT: On the other hand, a turf war between the psychosocial club with their GET and CBT and Phil Parker with his LP would be fun to watch, after all they are both furthering themselves by abusing the same patient group and may not want to split the pie. It would leave EC in the middle, but she would probably find a way to take advantage of that.

Filth, the lot of them.

 

[Yogi]

I agree it becomes counter-productive. That is such a strong simple dignified statement from Solve ME/CFS. If only all the charities would come together and put out something similar - a strong unified clear statement. I think it would make a huge difference.
Movements need a clear message and leadership.

It is terrible that some of the charities take all our cash (especially AFME +MEA) but then don't do anything and patients are let down and have to fight this abuse and smear campaign by Esther Crawley (and those 2 charities are in the tent with her in a huge conflict of interest).

 

[charles shepherd]

It is terrible that some of the charities take all our cash (especially AFME +MEA) but then don't do anything and patients are let down and have to fight this abuse and smear campaign by Esther Crawley (and those 2 charities are in the tent with her in a huge conflict of interest).

Have you not noticed what the MEA has been doing this week re the NICE guideline and SMILE trial?

CS

 

[Luther Blissett]

Many have been archived at webarchive. Lots of professionals used this.

https://web.archive.org

What is the difference/advantage of the other one?

The difference is that websites can ask for content to be removed from archive.org, enabling things to go 'missing'.

 

[Yogi]

Have you not noticed what the MEA has been doing this week re the NICE guideline and SMILE trial?

CS

Of course I have noticed.

I have noticed your same reaction nearly every year for over a decade. I am bored it is a bit like a broken record - I am sorry to be so abrupt but I have to be honest.

I am just not gullible enough to believe it to have any impact. I don't think ME patients should swallow this nonsense any longer.

You have been out manoueverd by Wessely, Sharpe, White, for two decades and now even Crawley. That is the truth and the MEA have let patients down.

You know what to do to stop this abuse of ME patients and the lack of biomedical treatment. But you decide not to for some unknown reason.

However instead of that you have colluded with Crawley!

 

[Wonko]

@Yogi

I'm not really aware of what your gripe is with @charles shepherd , it seems to be based around the fact that the MEA has shared a platform with EC and is involved with the same oversight authority?

I assume you are aware of the political reality that people/organisations with completely opposing views often have to share the same platform and sit committees to get anything done, and/or try and minimise the damage the other does?

edit - okay your last post helps explain your position, I'm not commenting about how valid it may be as I don't know the specifics re: CS, but it seems to me that none of the the charities have made a lot of headway from a patient perspective, I'm not convinced this is their fault however, it's more the fault of the ones that have sold us out, AfME for instance, than MEA, and because the BPS lobby has such a strong, well organised political foothold.

I may add to this or repost later - sorry - knackered

 

[Yogi]

The difference is that websites can ask for content to be removed from archive.org, enabling things to go 'missing'.

Interesting. Thanks for that. Can they not get things removed from this other website?

 

[AndyPR]

It is terrible that some of the charities take all our cash (especially AFME +MEA) but then don't do anything and patients are let down and have to fight this abuse and smear campaign by Esther Crawley (and those 2 charities are in the tent with her in a huge conflict of interest).

I respect that this is your opinion but I don't agree that the MEA do nothing. It's probably known that I am one of many who would like to see them leave the CMRC but there is plenty else that they do that I support.

But equally that is just my opinion, everybody is free to make their own minds up on it.

 

[Yogi]

@Yogi

I'm not really aware of what your gripe is with @charles shepherd , it seems to be based around the fact that the MEA has shared a platform with EC and is involved with the same oversight authority?

I assume you are aware of the political reality that people/organisations with completely opposing views often have to share the same platform and sit committees to get anything done, and/or try and minimise the damage the other does?

I have explained above. They need to change tactic and become proactive rather than just reactive as for decades they have been ignored and ME patients have lost while the BPS have won. PACE, FINE, SMILE, MAGENTA, FITNET etc etc- All on MEAs watch.

Instead of this he colludes with Esther Crawley against ME patients while doing this reactive firefighting press responses every few months when the BPS and Crawley set the patient community back with their dodgy trials.

 

[Wonko]

Instead of this he colludes with Esther Crawley against ME patients .........

That's a fairly strong thing to say, given @charles shepherd is not actually in a position to change or even influence the actions of either EC or the BPS mob (as far as I know).

"Firefighting" is AFAIK all he can do. If no one is prepared to listen I'm not sure what he can do apart from keep chipping away.

 

[Snowdrop]

It would be good if ME advocacy groups could begin to set the agenda rather than putting out fires. I guess the issue is how this would be done.
A clear coherent strategy needs to be in place. And money I expect.

 

[Yogi]

That's a fairly strong thing to say, given @charles shepherd is not actually in a position to change or even influence the actions of either EC or the BPS mob (as far as I know).

"Firefighting" is AFAIK all he can do. If no one is prepared to listen I'm not sure what he can do apart from keep chipping away.

Of course. He gives her the cover of ME patients support. If MEA put out a strongly worded statement condemning Crawleys abuse of disabled ME patients and stopped colluding on CMRC then we would be in a stronger position. They weaken all our positions. But they continue to collude and then do this regular show of shock and displeasure about the latest research.

Join the dots.

 

[Wonko]

It would be good if ME advocacy groups could begin to set the agenda rather than putting out fires. I guess the issue is how this would be done.
A clear coherent strategy needs to be in place. And money I expect.

It'd be great, the problem is I would imagine after all this time they've probably tried every approach they can think of, so other than the firefighting approach, of pointing out the problems with the "research" then, given it looks like they don't have the resources to shove posters etc up everywhere, like was done for MS 30 odd years ago, what else can they do?

Seriously

edit - removed a comment meant generally, not at @Snowdrop