Ysabelle-S
Highly Vexatious
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- 524
Well I'm off to bed. This is way past my bedtime, especially since I'd been going to bed around nine-ish for the better part of this year.
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"Got ME? Just SMILE!" - Media coverage of the SMILE trial…..
- Thread starter charles shepherd
- Start date
NelliePledge
Senior Member
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Err does the BBC article say "a type of brain therapy".......... or am I imagining that?
Esther12
Senior Member
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LOL - that stood out to me too.
NelliePledge
Senior Member
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yep brain therapy that involves getting you to hand your brain over to the "therapist" for washing
daisybell
Senior Member
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- New Zealand
Esther12
Senior Member
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I think it was that those providing SMC were not informed whether participants were in the LP group of not.
NelliePledge
Senior Member
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would that make any difference?
markielock
Senior Member
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- 319
This is disappointing. These are just a collection of heavily bias articles. They read more like a marketing pitch for the Lightning Process.
Considering we just had a CFS/ME symposium that offered up lots of up-to-date research, not to mention many other recent breakthroughs (that were published in the news) and, I don't know, YEARS of academic history and controversy... you'd of thunk the authors would of had many more resources to draw on to create a balanced viewpoint on the subject.
I wish that news outlets would stop jumping the gun and actually focus on what really the core matter/narrative is: no one truly knows what the heck is going on, we're trying to find out, here's how you can help out/contribute/fund the research from the MANY angles it's being looked into and we cannot endorse any treatment without unequivocal evidence that it's working for most people. Is that too much to ask for?
On a side note: does the shadowy figure who has this agenda of undermining CFS research pay extra for authors to comment on how threatening and menacing the sick, mostly house and bed bound people are? In all the articles I've seen, it always reads like a personal, bitter remark by someone: they're scaring away researchers, no one wants to work with them due to the threat of violence, they're like crazed animal rights activists etc. It's pathetic lol. "Please, physically and mentally assault yourself, i'm too debilitated to do it myself".
A good scientist, researcher, problem solver, business owner etc... would look at the criticism as the wheel of the ship they are steering, something to use to change course if it's going in the wrong direction. They don't have to people please, if they could unequivocally prove it was a psychosomatic condition and this certain technique cures most people 100% without any placebo effect or other doubt: fine. But the criticism surrounding the endlessly sloppy execution in their research and how they get their 'discoveries' portrayed in the media should be alarm bells to them if they actually wanted to solve the problem. What's the actual bloody agenda here? lol
Considering we just had a CFS/ME symposium that offered up lots of up-to-date research, not to mention many other recent breakthroughs (that were published in the news) and, I don't know, YEARS of academic history and controversy... you'd of thunk the authors would of had many more resources to draw on to create a balanced viewpoint on the subject.
I wish that news outlets would stop jumping the gun and actually focus on what really the core matter/narrative is: no one truly knows what the heck is going on, we're trying to find out, here's how you can help out/contribute/fund the research from the MANY angles it's being looked into and we cannot endorse any treatment without unequivocal evidence that it's working for most people. Is that too much to ask for?
On a side note: does the shadowy figure who has this agenda of undermining CFS research pay extra for authors to comment on how threatening and menacing the sick, mostly house and bed bound people are? In all the articles I've seen, it always reads like a personal, bitter remark by someone: they're scaring away researchers, no one wants to work with them due to the threat of violence, they're like crazed animal rights activists etc. It's pathetic lol. "Please, physically and mentally assault yourself, i'm too debilitated to do it myself".
A good scientist, researcher, problem solver, business owner etc... would look at the criticism as the wheel of the ship they are steering, something to use to change course if it's going in the wrong direction. They don't have to people please, if they could unequivocally prove it was a psychosomatic condition and this certain technique cures most people 100% without any placebo effect or other doubt: fine. But the criticism surrounding the endlessly sloppy execution in their research and how they get their 'discoveries' portrayed in the media should be alarm bells to them if they actually wanted to solve the problem. What's the actual bloody agenda here? lol
Esther12
Senior Member
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- 13,774
I thikn it's better than having them know. Info on how many participants in each arm did CBT or GET would let us see if it led to SMC being applied to in the same way for those who had LP or not.
Sound like quarter blinding, maybe.
(The dog is for morale, comrades.)
the dog would be a better therapy dogs behaviour nearly always puts a smile on my face a genuine smile not one that has been forced on me by charlatans.
(The dog is for morale, comrades.)
BBC actually ok: https://www.bbc.com/news/amp/health-41336384
Although
You could have knocked her down with a feather.
Although
You could have knocked her down with a feather.
Cinders66
Senior Member
- Messages
- 494
Isn't the problem here
0 It is defined as generalised fatigue causing disruption of daily life, persisting after routine tests and investigations have failed to identify an obvious underlying cause.11 A minimum of 3 months of fatigue is required before the diagnosis can be made.12 On average, those affected miss a year of school overall and half are bedbound at some stage.13 14
How many of us recognise this as a description of ME?
I don't see how acceptance of two different ideas of CFS and ME/CFS running at the same time can continue in uk.
Crawley does the whole abuse thing again
But a minority of activists and campaigners who feel CFS is being categorised as a psychological illness are deterring scientists from research and doctors from going into the field to treat people who desperately want to get better. Crawley was attacked for launching the latest trial, as she has been in the past.
“At medical school people are told not to go into [CFS]. As researchers they are told not to go into it because you get so much abuse,” she said. “We still have a condition which is really common and really disabling and children begging for treatment and begging for answers, but people won’t go into it.
“When I think about leaving, which I do a lot, I think about the children who come to my clinics who have miserable lives because current treatment is not effective enough. We have to do research.”
I don't think ME charities should be working in any collaborative way with the likes of Crawley and I think walking from the collaborative is the right course of action, the CMRC is being used as a fig leaf for doing nothing anyway.
I think charities like those in forward ME should go it Alone with trying to improve research and make clear that EC, the BACME etc are just about fatigue and hindering the effort for those with complex disease
0 It is defined as generalised fatigue causing disruption of daily life, persisting after routine tests and investigations have failed to identify an obvious underlying cause.11 A minimum of 3 months of fatigue is required before the diagnosis can be made.12 On average, those affected miss a year of school overall and half are bedbound at some stage.13 14
How many of us recognise this as a description of ME?
I don't see how acceptance of two different ideas of CFS and ME/CFS running at the same time can continue in uk.
Crawley does the whole abuse thing again
But a minority of activists and campaigners who feel CFS is being categorised as a psychological illness are deterring scientists from research and doctors from going into the field to treat people who desperately want to get better. Crawley was attacked for launching the latest trial, as she has been in the past.
“At medical school people are told not to go into [CFS]. As researchers they are told not to go into it because you get so much abuse,” she said. “We still have a condition which is really common and really disabling and children begging for treatment and begging for answers, but people won’t go into it.
“When I think about leaving, which I do a lot, I think about the children who come to my clinics who have miserable lives because current treatment is not effective enough. We have to do research.”
I don't think ME charities should be working in any collaborative way with the likes of Crawley and I think walking from the collaborative is the right course of action, the CMRC is being used as a fig leaf for doing nothing anyway.
I think charities like those in forward ME should go it Alone with trying to improve research and make clear that EC, the BACME etc are just about fatigue and hindering the effort for those with complex disease
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The BBC article - 'brain therapy' aside - isn't too bad. Whereas, based on the sound of my wife shouting at the radio in the shower, it appears the R4 Today Programme segment is pretty awful!
(Edit - the main segment on this is at 0750. Appears it will include Prof Crawley and 'Catherine' who 'suffered from CFS and is doing research into the condition')
(Edit - the main segment on this is at 0750. Appears it will include Prof Crawley and 'Catherine' who 'suffered from CFS and is doing research into the condition')
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Cheshire
Senior Member
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- 1,129
I can nearly ear the sound of Phil Parker rubbing his hands with glee.
Cheshire
Senior Member
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- 1,129