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

[Dx Revision Watch]

Nothing in The Times print edition or online edition, yesterday, nor this morning, so perhaps The Times is not covering.

Today's New Scientist print edition won't arrive until later this morning, but nothing that I can see in the NS online edition.

 

[ladycatlover]

Nothing in The Times print edition or online edition, yesterday, nor this morning, so perhaps The Times is not covering.

Today's New Scientist print edition won't arrive until later this morning, but nothing that I can see in the NS online edition.

I imagine it won't be in print edition till next week.

 

[lilpink]

Following my letter to Tom Feilden (Science Editor at BBC R4) yesterday the MEA was given a right of reply on BBC R4 Today at 6.50am this morning (Friday)

I had to get up at 5am this morning to go to the BBC studio in Glos at just before 6am!

As it's BBC R4 Today they would not do this on the phone and the BBC satellite van that normally comes to my home address here in the wilds of the Cotswolds wasn't available this morning

I was also told that I would have the (approx) 10 minutes slot before the 7am news but was then informed that I would only have about 3 or 4 minutes to get my points across!

I had a very difficult conversation with a senior producer on Today last night - who had clearly swallowed the message that we were being pretty horrible in opposing a clinical trial which had demonstrated that the LP could help to get kids with ME better and back to school

And I think Stephanie Saunders was going to go down that route as well - which is why I decided to just push on and say what I wanted to say before being chopped at 6.55

Time for breakfast…

Is there a listen again facility for this?

 

[lilpink]

Useful blog from Peter Kemp illustrating the (well known to us) fake claim of LP being curative for Esther Rantzen's daughter's ME which wasn't. Short and sweet and useful to share and tweet:

https://peterkempblog.wordpress.com/2017/09/22/the-lightning-process-coercion-and-placebo/

 

[slysaint]

Is there a listen again facility for this?

http://forums.phoenixrising.me/index.php?posts/909624/

 

[lilpink]

http://forums.phoenixrising.me/index.php?posts/909624/

Thanks..just listened. I must say Stephanie doesn't seem to want to apply an even hand to this subject does she? But then it is the BBC...

 

[lilpink]

https://twitter.com/i/web/status/910955949388701697

 

[lilpink]

https://twitter.com/i/web/status/910883665617539072

 

[Luther Blissett]

I had to get up at 5am this morning to go to the BBC studio in Glos at just before 6am!

As it's BBC R4 Today they would not do this on the phone and the BBC satellite van that normally comes to my home address here in the wilds of the Cotswolds wasn't available this morning

I was also told that I would have the (approx) 10 minutes slot before the 7am news but was then informed that I would only have about 3 or 4 minutes to get my points across!

In reference to how you were treated:

Equality Act
From Section 20: Duty to make adjustments

Explanatory notes

82.This section defines what is meant by the duty to make reasonable adjustments for the purposes of the Act and lists the Parts of the Act which impose the duty and the related Schedules which stipulate how the duty will apply in relation to each Part. The duty comprises three requirements which apply where a disabled person is placed at a substantial disadvantage in comparison with non-disabled people. The first requirement covers changing the way things are done (such as changing a practice), the second covers making changes to the built environment (such as providing access to a building), and the third covers providing auxiliary aids and services (such as providing special computer software or providing a different service).

83.The section makes clear that where the first or third requirements involves the way in which information is provided, a reasonable step includes providing that information in an accessible format.

84.It sets out that under the second requirement, taking steps to avoid the disadvantage will include removing, altering or providing a reasonable means of avoiding the physical feature, where it would be reasonable to do so.

85.It also makes clear that, except where the Act states otherwise, it would never be reasonable for a person bound by the duty to pass on the costs of complying with it to an individual disabled person.

http://www.legislation.gov.uk/ukpga/2010/15/notes/division/3/2/2/8

Just in case you would like to mention it in any correspondence.

 

[Yogi]

MEAction Press release

http://www.meaction.net/2017/09/20/...py-as-treatment-for-chronic-fatigue-syndrome/

 

[AndyPR]

It's probably been mentioned before but with the lack of evidence for the "abusive patient activist" meme, might it not be worthwhile investigating a complaint to the proper authority (whoever that might be)? Given the defamation towards patients, might it not be under the heading of hate speech? I know nothing about the intricacies in this kind of area so happy to be corrected.

 

[Yogi]

https://twitter.com/i/web/status/910995410759618560

They should also put a statement out on website not just face book

 

[Yogi]

It's probably been mentioned before but with the lack of evidence for the "abusive patient activist" meme, might it not be worthwhile investigating a complaint to the proper authority (whoever that might be)? Given the defamation towards patients, might it not be under the heading of hate speech? I know nothing about the intricacies in this kind of area so happy to be corrected.

Well all the charities if they truly represented patients would produce a joint statement and act up on it.

Certain charties sit around and when the damage is done they make superficial statements how shocked they are and don't agree with such and such.

They should use the joint statement to respond to all the media organisations who defamed pwME and spread Esther Crawley's disability hate speech.

However it comes back to the infamous tent that some are sharing with the EC who is responsible for the abuse and defamation and disability hate speech.

 

[Ritto]

Thank you @charles shepherd. You managed it very well and handled her brilliantly.

 

[Stewart]

At this point I am going to write to the people at Today to thank them for giving me the opportunity to make a correction and explain (very briefly!) why we opposed the trial taking place

I then want to be positive and explain a few of the other things that are happening at the moment - in particular UNREST and the parliamentary reception at the Speaker's residence that we are organising

CS

@charles shepherd

Charles,

Thanks very much for being willing to jump through so many hoops - getting up so early, travelling to Gloucester - in order to get just three minutes to explain some of the issues with SMILE. If I were in your shoes I'm not sure I would have pushed myself for such a small amount of airtime at so early an hour - but I'm extremely glad that you're made of stronger stuff than I am.

I hope that as well as writing a note of thanks to the BBC, you'll be sending a strongly worded email to Stephen Holgate complaining that the Vice-Chair of the CMRC has very publicly bad-mouthed a member of the Collaborative by intentionally misrepresenting the MEA's objections to SMILE. You should not have had to get up at 5am this morning to correct the record. Speaking as someone who supports the MEA's continued involvement with the CMRC, I don't see how the Collaborative can have any viable future if it's Vice-Chair is determined to go on smearing people and organisations who make legitimate criticisms of her work. Through her actions and words she continues to deliberately undermine the collaborative approach that the CMRC supposedly exists to promote.

If Holgate had acted when David Tuller complained about Crawley slandering him four months ago, she would probably have been more circumspect in her comments about the MEA yesterday morning. But unfortunately Holgate did nothing and he therefore bears a large measure of responsiblity for the fact that the Vice-Chair continues to act in a way that undermines the CMRC's integrity. If he's still not prepared to act and censure Crawley in some way for her remarks - what will it take?

As Holgate knows, many patients are already deeply suspicious of the CMRC and its agenda. If he fails to act against Crawley in a meaningful way this time he will share Crawley's responsibily for the inevitable collapse of the whole endeavor - something that I'm sure he doesn't want.

 

[Cheshire]

@charles shepherd
While I really appreciated your intervention on the BBC this morning, I also think something should be done by all ME associations to protest vigourously against the "coordinated campain of ME activists" theory.

This kind of speech can be assimilated to racism and is pure discrimination.
It is seriously undermining our voice, despite no proof of it being true (quite the contrary according to the tribunal).

IMO it is one of the most important things that should be adressed now.

 

[Sean]

I have big issues with executive function these days. I can plan, but not initiate action.

Much the same story here.

But is that a direct pathology, or the body's management response to pathology?

Does the ME body manage it's acquired physical inability to carry out intentional plans (or the cost of doing so, i.e PEM,) by disrupting the executive processes in order to prevent or limit the activation of the physical actions required for the plan to be carried out?

 

[Sean]

Well all the charities if they truly represented patients would produce a joint statement and act up on it.

IMO it is one of the most important things that should be adressed now.

Couldn't agree more. The 'harassing abusive anti-psych anti-science undeserving-of-sympathy bastard minority of patient-activists who just won't take their damn medicine and are scaring off good researchers and depriving the other 99% of patients from treatment ' meme need to be killed stone cold dead, and its proponents and propagandists exposed for the hypocritical defaming self-serving cowards that they are.

One thing in our favour is that when the general public finally do get the real story, they are not going to have much sympathy for the perpetrators. Few things scare and anger the public more than abuse of power. Because they figure it might be them next.

 

[Mithriel]

Hate crimes are defined as ones which do not just impact the people involved but cause alarm and distress to a whole community. I presume hate speech is similar. If so, these things definitely come into that category. I feel sick and ill everyday but then I will be watching TV or looking at a newspaper and suddenly come across something that makes my stomach turn over.

I have felt bad all week knowing what was coming. You'd think that over the years I would have got used to it, but it hurts more every time, maybe because I have no physical resources left.

I feel personally threatened and afraid for myself and for the future of my family.

 

[Ysabelle-S]

@Sean If there really are 250K of us, that's potentially 250K stories of what's happened to us at the hands of the medical profession. And 250K stories of what it's like to be on the end of anti-ME ableist abuse by the media. We might not control the media, but we sure as hell have social media to tell our stories. And I do think the media will be forced to change their tune when the story finally breaks. And yes, what happened to us at the hands of these abusive people could and will happen to others. We only have to see the MUPS narrative and the other illnesses they're targeting. The public need to understand sooner or later that it could be them, their child, or another member of their family being treated to disability denial and withholding of treatment and proper research. No one is safe from these so-called health professionals.