Another good article by Sonia Poulton (daily) mailonline

[Sasha]

There is a comment on there by a Sasha.

Hi Alex - that was me.

I've posted similar comments about that gap in the market on journalists' blogs when the ME story comes up but so far, no one has bitten. These days, I don't think papers have the funding to do proper investigative journalism and just sit at their desks and trawl the internet for five minutes instead. Ironically, the Daily Mail has more resources than most and so other papers often just parrot what they see in the Mail. They can have an influence for good or bad beyond their immediate readership for that reason.

 

[Sasha]

No new comments at all have appeared since 3 pm today - er, that would be yesterday in GMT - it's still the 20th here - just barely.

My comment and everyone else's sat in moderation for ages and then all appeared at once - I don't think they check often and then do a big batch. Hope all your comments get through!

 

[Sasha]

A

My comment and everyone else's sat in moderation for ages and then all appeared at once - I don't think they check often and then do a big batch. Hope all your comments get through!

Additional comments now up on both the Hanlon and Poulton blog.

I've only read the new Hanlon ones - there's a very good one by a Peter Wachtel from Oz encouraging him to talk to scientists.

 

[alex3619]

https://www.facebook.com/permalink.php?story_fbid=10151054102878251&id=216740433250

It seems Simon Wessely has had The Talk with Sonia Poulton! This is so far not confirmed by me with another source.

 

[user9876]

https://www.facebook.com/permalink.php?story_fbid=10151054102878251&id=216740433250

It seems Simon Wessely has had The Talk with Sonia Poulton! This is so far not confirmed by me with another source.

There are some hints on her twitter feed. Pretty sure there was another bit but cann't find it now I think it might have been deleted

Dapper Dan ‏@redfoxcountry
@SoniaPoulton Simon Wessely? I haven't a clue. Was he having a go?
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3h Sonia Poulton ‏@SoniaPoulton
@redfoxcountry But it was a definitive marker of thorn-in-establisment side impact.

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[biophile]

It was also posted by Wildaisy on the other forum:

http://www.mecfsforums.com/index.php/topic,13497.msg141622.html#msg141622

Sonia Poulton (https://www.facebook.com/sonia.poulton)

Woke to find a long e-mail from Professor Simon Wessley...for those who don't know, he is the big State cheese when it comes to ME...for many people his name represents years of their personal misery.

My recent article on ME, effectively, opposes his stance on the illness and I have been repeatedly warned that I can expect a communication from him...well it came...he says I 'may be surprised to discover' that he agrees with most of my article and then he goes on to detail how much of it he actually didn't like at all.

He didn't like me blaming psychiatry for standing in the way of research and treatment...he didn't like that I didn't give him credit for his 'contribution to the debate' and he most definitely did not like the idea that I say graded exercise is detrimental to the patient...oh no! That did not impress him at all.

He said it all in a very nice way but it doesn't take much to pick up the true tone of how someone feels about you...anyway, he invited me to meet him for a coffee to discuss his stance further...I have pointed out to him that I am extremely busy at the moment but I will be back in touch.

The truth is this...I have done my research, and he knows it, and while as a journalist I should always be prepared to hear the other side of the story (I am) there comes a point when you know what you know and no amount of sharp words can change that...

How would Wessely even know that GET and the underlying rationale is safe when there has been little if any evidence of compliance or increased activity from patients in clinical trials?

For a prime example, it seems that GET was relatively safe in the PACE Trial because patients did not really have to increase activity if they did not feel like it, and the threshold for harm was high enough so that even moderate relapses lasting less than 4 weeks were ignored. Also, AFAIK, there was an effort to make sure the patients attended sessions and the therapist kept true to the manuals, but no evidence of compliance in the sense that patients actually increased activity. The dismal walking test scores and lack of returning to gainful employment suggests they did not. Evidence from other CBT trials (which also encourages graded increases in activity) has even refuted objective increases in physical activity, but PACE suspiciously chose to drop actigraphy as an outcome measure.

At best, it can be said that it is relatively (depending on the threshold for harm) "safe" to gently encourage broadly-defined CFS patients to gradually increase activity but allow them to refuse to do so. After about two decades of hype, there is no convincing evidence to support the claim that graded increases in overall activity is safe for ME/CFS. This is a best case scenario from clinical trials, real world consequences are more grim.

 

[currer]

I thought Wessely claimed to have left the ME field long ago.

 

[maryb]

Sonia quote "I have pointed out to him that I am extremely busy at the moment but I will be back in touch"
This made my blinking year, how many people around him don't suck up to this very flawed individual.

 

[SilverbladeTE]

Sonia quote "I have pointed out to him that I am extremely busy at the moment but I will be back in touch"
This made my blinking year, how many people around him don't suck up to this very flawed individual.

LOL, yes a skilled riposte'!
But I kind of preffer something far less refined, like, oh....

"How do you manage to use a phone, with your head so far up your ass?
Have you learned to use your tongue to dial the numbers?"

 

[Sasha]

Just been having a look at Sonia Poulton's previous blogs on other topics and she's posted recently on a number of disability issues, including sticking the boot into the WCA:

http://poultonblog.dailymail.co.uk/...up-for-our-sick-and-disabled-mr-miliband.html

It's interesting that that had 2 comments and she's already up to 124 on her ME post. Michael Hanlon similarly rarely gets comments.

I think that commenting on blogs when ME is mentioned is important. It encourages journalists (a) to keep tackling the subject and, I hope (b) to tackle it responsibly because they will become aware, if they're not already, that they're talking about real, live people who will engage with them if their facts are wrong.