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

Snowdrop

Rebel without a biscuit
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2,933
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

I'm not affiliated with, or even a contributor to any of the ME charities, I don't even know much about them apart from that AfME is on the other side (as a charity), but there is a man here, trying to help, regardless of results he probably doesn't deserve to be lambasted.

I didn't lambaste anyone. Mine was a general comment. A wish if you like.

I don't think all avenues of improving advocacy in the UK have been explored/exploited though. There is room for thinking about what can be done more effectively still. IMO.
 

Wonko

Senior Member
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1,467
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The other side.
I didn't lambaste anyone. Mine was a general comment. A wish if you like.

I don't think all avenues of improving advocacy in the UK have been explored/exploited though. There is room for thinking about what can be done more effectively still. IMO.
Yes, I agree, you didn't, mine was also a general comment, not aimed at anyone in particular, which just happened to be tagged onto a response to your post - my apologies.

I hope you are right and that a eureka moment will occur, after this amount of time it seems unlikely to me, but I suppose they do mainly occur after everything obvious/conventional has been tried and has failed.
 

Londinium

Senior Member
Messages
178
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 100% agree. :)

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/uploads/2015/05/MEAction–patient-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

I'm interested in what's effective. I'm an engineer by training and a ruthless pragmatist. So the questions I ask myself:
  1. Would being the 37th person to comment under this tweet achieve anything where the first 36 haven't?
  2. Even if I think an article is dreadful, would replying 'you're a crap journalist' / 'your story was awful' help or hinder getting across the point that ME patients have valid scientific concerns and are not the raging psychos that we've been portrayed?
  3. Is using unpleasant language like 'collusion' against ME charities a good use of time, a good thing to do, and in any way helpful?
 

Countrygirl

Senior Member
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5,669
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UK
21766631_10155755817386880_7677113245767034733_n.jpg


Stumbled across this little devil. Thought it worth sharing :)
 

Cheshire

Senior Member
Messages
1,129
This poorly 10-year-old is absolutely raging about a new way to treat ill people

"Do you think we don't want to go to school? What's wrong with you?" Shannon says to camera.

"It just makes me so mad to hear that from people. They say to raise your hand out and say, 'Stop.' Don't you think I tried that?

"It hurts to know people think you're putting it on. But that's their fault, they don't know what it's like. We've got this illness, we just have to keep rising above it."

Her mum Sharon added: "It's damaging to children by almost saying to them, 'If you don't get better, blame yourself.'

"There are stupid accusations coming out in the media about the Lightning Process and how it can improve ME because ME sufferers want to be ill, they can apparently think themselves better. My amazing daughter Shannon has a powerful message to them."
http://www.plymouthherald.co.uk/news/health/poorly-10-year-old-absolutely-516768
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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UK
Under Health News Round Up

FT Health (Financial Times)

https://www.ft.com/content/b61e8026-9f7e-11e7-9a86-4d5a475ba4c5

Very brief, mentions Campaign groups disagree (links to BBC Health News), mentions NICE revising its guidelines for treatment, (given the juxtaposition, some readers may infer that NICE is revising in response to paper's apparent findings), includes link for "new documentary Unrest gaining plaudits".
 

Solstice

Senior Member
Messages
641
Yes, I agree, you didn't, mine was also a general comment, not aimed at anyone in particular, which just happened to be tagged onto a response to your post - my apologies.

I hope you are right and that a eureka moment will occur, after this amount of time it seems unlikely to me, but I suppose they do mainly occur after everything obvious/conventional has been tried and has failed.

Best thing we can do atm is point everyone we know who'd give a damn to good research being done, plugging iime, meruk, omf etc. And getting as many people as possible to donate.

I've informed my GP about the upcoming possible treatments like rituximab, filgotinib, the other cancer drug.

I've informed the doctor's assistants about what is going on with me and when they have trainee's I try to inform them as best as I can. About how exercise makes 50 to 75 procent of us worse, about PEM etc.

That and my family is as far as my reach goes atm. But when I get a bit better I plan to do more.
 

slysaint

Senior Member
Messages
2,125
@charles shepherd

On the question of ethics (which the BBC 'grilled' you about quoting the ethics procedure etc) maybe you could use this quote (which I have finally found) which Coyne used in his blog:

"Esther Crawley has said “If the Lightning Process is dangerous, as they say, we need to find out. They should want to find it out, not prevent research.”

I would like to see her try out that rationale in some of the patient safety and human subjects committee meetings I have attended. The response would not likely be very polite."

https://www.coyneoftherealm.com/blo...l-of-quack-chronic-fatigue-syndrome-treatment
 

slysaint

Senior Member
Messages
2,125
Don't know if this article has been posted:
http://skepdic.com/lightningprocess.html
(from 2015)
"
Daniel Clark, who has expressed concerns about Crawley's work before, has some concerns about this study:

....the Lightning Process RCT being carried out by Esther Crawley changed it's primary outcome measure from school attendance to scores on a self-report questionnaire. Given that LP involves making claims to patients about their own ability to control symptoms in exactly the sort of way likely to lead to response bias, it seems very likely that this trial will now find LP to be 'effective'. One of the problems with EBM is that it is often difficult to reliably measure the outcomes that are important to patients and account for the biases that occur in non-blinded trials, allowing for exaggerated claims of efficacy to be made to patients. "

"a common explanation for long-term fatigue given by LP folks is something called the “Physical Emergency Response,” which seems to be a repackaging of Hans Selye's General Adaptation Syndrome. Chronic fatigue is the body's reaction to stress. My correspondent describes the theory: "When a stress-causing stimulus produces the “fight or flight” response a number of hormones are released and if these higher than normal hormone levels remain high for extended periods, one can suffer from restlessness, insomnia, fatigue, poor immune response and other symptoms." The LP folks maintain that people who are chronically fatigued are stuck in a physiological Catch-22 that continually puts stress on the body causing their lethargy.

But it is unlikely that in the short period of time that LP is performed that any continual monitoring of hormones is done. The explanation sounds like backdrop that may or may not be true but is irrelevant to the treatment, which seems to be standard cognitive behavioral therapy (CBT)."

Also includes a good step by step (or should that be stop by stop) description of the LP course.

 

Revel

Senior Member
Messages
641

slysaint

Senior Member
Messages
2,125
The Swedish study below also used questionnaires to gather their data on fatigued adolescents with poor school attendance and came to a very different conclusion as to the cause (and not a mention of CFS in sight):

https://www.sciencedaily.com/releases/2017/09/170915164815.htm

Well yes they report the same over here in the UK:
https://www.theguardian.com/educati...chool-lack-of-sleep-deprivation-mental-health

It's Crawley who's linking it all to CFS, ME, chronic fatigue, CDF(chronic disabling fatigue), fatigue....
 

lilpink

Senior Member
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988
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UK
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