Telegraph Tomorrow - Exercise and positivity can overcome ME

[sillysocks84]

.

@sillysocks84 ..... I don't think 'conspiracy'.. I think AFME thinks that featuring Martine McCutcheon as a kind of AFME representative is a crowd pleaser. Uninformed or naive members think its 'good' that ME gets more publicity via celebrities, regardless of how uninformed or damaging the public messages of celebrities can be.

To me it feels they don't give two $h!*$. If I didn't have this disease I'd think me doesn't deserve much funding based on this.

 

[Sean]

http://www.thelancet.com/cms/attachment/2039587082/2053187360/gr2_lrg.jpg

If those slopes are maintained then APT and SMC will probably outperform CBT and GET at the 5 year follow up.

How are they going to spin that?

 

[sillysocks84]

http://www.dailymail.co.uk/tvshowbi...ring-chronic-fatigue-syndrome-depression.html

She's a bleeping joke @Wildcat ! @ least how this article reads.

 

[user9876]

http://www.thelancet.com/cms/attachment/2039587082/2053187360/gr2_lrg.jpg

If those slopes are maintained then APT and SMC will probably outperform CBT and GET at the 5 year follow up.

How are they going to spin that?

They should have the data so they will probably just not publish.

 

[ukxmrv]

 

[alex3619]

Let's hope Coyne does his homework as to the history of this issue and especially the role of the pro-PACE "researchers" in the whole debacle.

This is something I have been concerned about. Its very hard to see unless you dig deep into the history. Pervasive spin and hype, backed by institutions and media reports, is an exemplar of Zombie Science, or science promoted by politics, bureaucracy and special interests regardless of merit.

 

[skipskip30]

Since when is CBT called 'positivity' anyway?

 

[TiredSam]

http://www.telegraph.co.uk/news/hea...gue-Syndrome-away.-Im-the-terrible-proof.html
the telegraph printed a balancing article

Not a bad article, followed by comments from horrible trolls.

 

[A.B.]

Part of the tactic used by them is to feed the prejudices of others and to smear patients in subtle ways while giving some superficial appearance of professionality.

The discrepancy between patient experience and the picture of the illness they want to promote is so large, the moment patients are taken seriously they're in trouble. So they have to make sure that patients are disbelieved.

Someone should publish the horrendous experiences patients had doing CBT and GET. That would be a real eye opener for many.

 

[eafw]

Part of the tactic used by them is to feed the prejudices of others and to smear patients in subtle ways while giving some superficial appearance of professionality.

Yes, plausible deniabilty along every step of the chain. No-one taking responsibility for what others are saying and more smoke and mirrors around the central problem which is the disgrace that is PACE, the PACE researchers and the SMC.

 

[sarah darwins]

A bit bloody late.

Re the "balancing article".

Indeed, a bit bloody late. And, of course, the op ed piece is written by a freelance writer who normally writes about books, whereas the article that has done the damage was written by the paper's Science Editor (who, as I said earlier, appears not to be a scientist of any description).

The result? I spoke to my father at lunchtime. He happened to be calling in on me anyway. He's a lifelong Telegraph reader. Fortunately, I happened to have talked to him a lot about the illness of late and he's fairly well informed. He asked me about it, and I explained the background re PACE. He was quite taken aback, not by what I was telling him but that 'his' Telegraph would print that article at all. He said, and I quote, "That's very surprising, because the article gives the impression that science has settled the issue of whether the illness is all in the mind. It seemed quite definitive."

Indeed. That's exactly the impression it gives, and was designed to give. And that's exactly the impression most readers of the paper will now carry away from this.

I doubt that the author of that original article has any sweet clue of how much damage she has done.

 

[Large Donner]

I'm interested as what he will say, as right now on twitter he is pleading the case that Sharpe et al are poor innocent lambs who have been dreadfully misrepresented by the news reports.

If that's the case Sharpe and co should be as disgusted by the media headlines as we are and should be issuing statements to that effect with immediately and perhaps even going on youtube to place their own sentiments on record about how appalling the media accounts are and how their study has been misrepresented. Surely with all the clout the SMC has this would be a piece of cake......

Waiting.....................!!!

 

[TiredSam]

I'm interested as what he will say, as right now on twitter he is pleading the case that Sharpe et al are poor innocent lambs who have been dreadfully misrepresented by the news reports.

He could be right in a way, if the journalist was a Lightning Process fan who was trying to help the cause but over-did it.

 

[eafw]

their study has been misrepresented

It's a quite deliberate misrepresentation by the press, of a quite deliberate misreprentation by the PACE researchers, of a horribly flawed study that they continue to milk for their own ends, and to the the detriment of people with ME.

 

[duncan]

Where does misrepresentation end and fraud, or malfaecance, since it was paid with public funds, begin? How is that distinction made and by whom?

 

[skipskip30]

The papers and the people behind the 'study' are to blame. The difference is you expect better from supposed medical professionals.

 

[Large Donner]

@ Charles Shepherd

It's a quite deliberate misrepresentation by the press, of a quite deliberate misreprentation by the PACE researchers, of a horribly flawed study that they continue to milk for their own ends, and to the the detriment of people with ME.

Very true.

My thoughts are, - as the MEA always contacts such awful journalists after such awful reporting perhaps its time for a change of tactic and both Sharpe and the Telegraph should be sent the same email asking them to comment on how there is such a contrast between the claims in the newspaper and the study "findings".

They need to be pitted against each other in a public arena. Either Sharpe would have to comment directly on the claims in the paper and say how they do not represent whats in the study or he would have to dig a deeper hole.

The journalist would also be put in the position to comment on how she came up with such claims.

 

[Valentijn]

http://www.telegraph.co.uk/news/hea...gue-Syndrome-away.-Im-the-terrible-proof.html
the telegraph printed a balancing article

How the f*** is an anecdotal patient report balancing out the horrific spin of medical research? If they want balance, they need to publish something on par with the Tuller article.

 

[TiredSam]

How the f*** is an anecdotal patient report balancing out the horrific spin of medical research? If they want balance, they need to publish something on par with the Tuller article.

Fortunately more people are persuaded by anecdotal / emotive stories than by facts and statistics, so it may not be all bad.

Edit - sorry, misread your post. The Tuller article would indeed be a perfect response.

 

[user9876]

How the f*** is an anecdotal patient report balancing out the horrific spin of medical research? If they want balance, they need to publish something on par with the Tuller article.

They need to withdraw the first article and give a correction of equal prominence since even Sharpe says they are wrong. It would be interesting to hear what the science editor was told in interviews and the press conference by Sharpe.