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

BS3boy

BS3boy

Messages
11
Esther12 said:
He's sharing some okay stuff too. I didn't think his talk at the CMRC was great, but it's worth being cautious [edit] in criticism of those who may not have had time to look into all the details (at least when they're not getting paid for claiming 'expertise').
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Hello Esther12 - I finally get approved on here (!) - thanks; & yes, my talk wasn't perfect at all; but never mind (I *Was* very nervous). I was representing a patient advisory group primarily - though obviously some points (the quips) were my ideas.

Am absolutely not in the business of getting into slagging matches, but (dear Yogi) I refute absolutely that I am any sort of "AfME stooge" ; I am a volunteer, and therefore, impartial, and 100% make my own mind up about things. Additionally, I do know a hell of a lot about the controversy surrounding the illness (I myself was ill 1997 - 2007) , and follow very closely recent developments & research "findings" (including ones that disappoint me massively - ie. SMILE - one of my PWME friends died in 2014 after trying the LP as a last resort. She'd been severe for 20 years. One of the reasons i am back in the ME/CFS world is as a tribute and memory to her short life).

I'm here to do the right thing, and FWIW I have no support for the BPS model of the illness, or any further behavioral trials. I was hoping they'd died down by now (eg. PACE ended in 2011; SMILE was started in 2011... a while ago), but sadly one or two remain. Here's hoping more great biomedical findings can come out of research - it was a privilege to witness some inspiring talks at the CMRC conference last week.
 
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AndyPR

Senior Member
Messages
2,516
Location
Guiding the lifeboats to safer waters.
Screen Shot 2017-09-22 at 20.03.36.png

https://www.facebook.com/SolveMECFSInitiative/posts/10154903210912108
 
Demepivo

Demepivo

Dolores Abernathy
Messages
411
10 year old speaks out against LP in Plymouth newspaper..
Smart girl :)

http://www.plymouthherald.co.uk/news/health/poorly-10-year-old-absolutely-516768.amp

.
A 10-year-old girl from Ernesettle has posted a powerful video criticising an ME treatment which encourages people to think themselves better.

Shannon Tiday has been dealing with ME (Myalgic Encephalomyelitis) for seven years and experiences a variety of chronic symptoms as part of the condition including crushing headaches, sensitivity to light, periods of extreme fatigue, blackouts and disorientation known as brain fog.


As a vocal spokesperson for ME Awareness Shannon decided to speak out after learning of a new treatment know as the Lightning Process which purports to relieve ME with psychological therapy over a three-day period.
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Solstice

Senior Member
Messages
641
Yogi said:
This is the main tweet with 100% responses against SMILE. Somehow this journalist or should I say churnalist still doesn't get it.

Click on the tweet to see all responses.

https://twitter.com/i/web/status/910774752557584384
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That's what was stunning to me. Not one person in a ton of reactions speaks out in favor of smile, esther crawley or his piece. For any sane person that would atleast be grounds to look a little further.
 
Luther Blissett

Luther Blissett

Messages
724
Location
Yorkshire, England
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.
 
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anni66

mum to ME daughter
Messages
563
Location
scotland
Ysabelle-S said:
@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.
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It' s been 250K for 10 years! If Canada is anything to go by it could be significantly more. I don' t know how accurate the " twice the rate of MS " is, but that might give a clue.
 
Dx Revision Watch

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
Messages
3,061
Location
UK
https://www.mstrust.org.uk/a-z/prevalence-and-incidence-multiple-sclerosis

MSTrust

Multiple sclerosis in the UK

There is currently no accurate data on the exact number of people with MS in the UK. A study by McKenzie et al at the University of Dundee worked out a figure based on coding in GP records. This gave a figure of 127,000 people with MS in the UK in 2010. Concerns were raised that this figure may include some records where there was an element of doubt about the diagnosis. If these records were excluded it would give a total of 107,000 people with MS in the UK. The McKenzie study also found that the number of people with MS in the UK is growing by around 2.4% per year, due to people with MS living longer.

A little over 5,000 people are diagnosed with MS each year, roughly 100 a week.

MS registers

There are two MS register projects underway.
  • The UK MS Register (link is external) is a scheme that allows people to upload information about their condition that allows researchers to look at different aspects of the condition across a large number of people. There are almost 15,000 people registered.
  • The Scottish MS Register (link is external) gathers information from records on new diagnoses of MS. This register has been running since 2010. In that time about 430 new cases of MS have been reported each year in Scotland, a lower incidence rate than suggested by the Dundee study.
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MS Society

MS Society briefing on UK prevalence study

https://www.mssociety.org.uk/sites/default/files/MS in the UK January 2016_0.pdf

We estimate that there are over 100,000 people with MS in the UK, and that each year around 5,000 people are newly diagnosed with the condition...

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Londinium

Senior Member
Messages
178
Solstice said:
That's what was stunning to me. Not one person in a ton of reactions speaks out in favor of smile, esther crawley or his piece. For any sane person that would atleast be grounds to look a little further.
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That doesn't matter. If you've been primed to expect criticism from 'unhinged ME activists' then a volume of tweets isn't going to change your mind - it perhaps should do, but it won't. In fact, in some cases the volume makes thing worse. It's one of the most insidious effects of the gaslighting of ME patients: that all criticism is down to anti-science psychotics.

Best thing to do in this case I think is move on. Engaging further just provides more 'proof' that writing about ME 'leads to abuse'.
 
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Londinium

Senior Member
Messages
178
(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)
 
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