-
Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
To become a member, simply click the Register button at the top right.
"You and yours" BBC phone in on "chronic fatigue" -26 sept
- Thread starter Chrisb
- Start date
ladycatlover
Senior Member
- Messages
- 203
- Location
- Liverpool, UK
Suspect her bit recorded earlier as she said "Good morning" whereas any fule know after 12 it's afternoon. Of course St Esther may well be that fulish. (going all Nigel Molesworth here)
slysaint
Senior Member
- Messages
- 2,125
Well they did it again, 'let people have their say' then get bl**dy Esther Crawley to have the last word with a load of BS.
@charles shepherd your bit was very good...........did they tell you EC was going to be talking?
@charles shepherd your bit was very good...........did they tell you EC was going to be talking?
'Urk' - I like that.
Does she know anything about OMF research, Naviaux, Fluge and Mella??
@charles shepherd
You did as well as the BBC would allow. Did they insist when setting up the program that EC should be given the last word, that Lightning process would only be discussed after conclusion of your contribution and that you should have no opportunity to question what is involved in the Lightning process?
This was not a properly balanced expression of the case.
You did as well as the BBC would allow. Did they insist when setting up the program that EC should be given the last word, that Lightning process would only be discussed after conclusion of your contribution and that you should have no opportunity to question what is involved in the Lightning process?
This was not a properly balanced expression of the case.
Yes, thank you @charles shepherd - excellent stuff. Good interviews with patients too.
Shame they levered in an extended advert for LP at the end..
Shame they levered in an extended advert for LP at the end..
I think overall it was a good program for the UK.
The remit was to talk about updating the NICE Guidelines and concentrated hugely on which treatments people had got on the NHS.
Most callers and Charles got good information across. Yes it was a shame that Charles had no chance to counter EC on LP.
However the fact that this was the greatest number of calls/emails/texts etc that the presenter remembers should mean it is on the BBC radar.
The remit was to talk about updating the NICE Guidelines and concentrated hugely on which treatments people had got on the NHS.
Most callers and Charles got good information across. Yes it was a shame that Charles had no chance to counter EC on LP.
However the fact that this was the greatest number of calls/emails/texts etc that the presenter remembers should mean it is on the BBC radar.
slysaint
Senior Member
- Messages
- 2,125
It certainly is; but they keep thinking the U-boat that's going around sinking every 'patient ship' in sight and protecting the good ship PACE is 'one of ours'.
Mrs Sowester
Senior Member
- Messages
- 1,055
EC doing her Princess Di voice, ewww.
slysaint
Senior Member
- Messages
- 2,125
now available to listen again:
http://www.bbc.co.uk/programmes/b095ptl7
http://www.bbc.co.uk/programmes/b095ptl7
It wasn't bad until the last 1/4 hour. Why can't BBC journalists and presenters not ask the obvious questions? When EC said very plainly that changing behaviour could change our biology she should have been asked to point to poof of that. Also she implied that the LP worked by changing sleep patterns and that participants physiology was subsequently altered during sleep and that had a knock-on effect on their health. Now afaik there is nothing in the SMILE protocol that suggests that any of the participants were part of a sleep study which measured these physiological changes at all.. so she's just using lies and sleight of hand to insinuate that the LP trial was more than just a quack brainwashing exercise with only subjective outcomes on people who have been told to only give positive answers.
Mrs Sowester
Senior Member
- Messages
- 1,055
Notice how it's never the child patient who calls to say that LP or GET worked for them?
It is always a parent who sings its praises.
It is always a parent who sings its praises.
Jenny TipsforME
Senior Member
- Messages
- 1,184
- Location
- Bristol
Yes it sort of makes out that patients just don't understand the complexity which is patronising. I've studied Health Psychology and some PsychoNeuroImmunology but I don't accept GET or CBT or LP as treatments for ME.
However, getting decent sleep is obviously physically beneficial and influenced by psychological state. Makes it sound like we're objecting to that and therefore very ignorant! Everyone with ME wants healthy sleep and has probably put a lot of effort into achieving it (including standard sleep hygiene techniques which aren't usually sufficient for us).
But overall I thought the programme was excellent progress
Even having the annoying 'BBC balance' bit at the end is progress from starting with that (and so making patients sound aggressive when they have to oppose initial ideas).
We've definitely seen progress in UK advocacy, despite the SMILE distraction (which could even turn out to be a blessing in disguise).
However, getting decent sleep is obviously physically beneficial and influenced by psychological state. Makes it sound like we're objecting to that and therefore very ignorant! Everyone with ME wants healthy sleep and has probably put a lot of effort into achieving it (including standard sleep hygiene techniques which aren't usually sufficient for us).
But overall I thought the programme was excellent progress
Even having the annoying 'BBC balance' bit at the end is progress from starting with that (and so making patients sound aggressive when they have to oppose initial ideas).We've definitely seen progress in UK advocacy, despite the SMILE distraction (which could even turn out to be a blessing in disguise).
snowathlete
Senior Member
- Messages
- 5,374
- Location
- UK
thanks @charles shepherd you do a lot of important media work that helps us a great deal I feel, as without you it would be much worse.
Thank you @charles shepherd for your voice on YouandYours today.
I also appreciated that you used Myalgic Encephalomyelitis as the name of ME.
All in all the programme was a good one. I was pleased it was noted that there had also been a lot of emails from patients saying to avoid the Lightning Process, so perhaps the promo of LP at the end was not so bad afterall.
I also appreciated that you used Myalgic Encephalomyelitis as the name of ME.
All in all the programme was a good one. I was pleased it was noted that there had also been a lot of emails from patients saying to avoid the Lightning Process, so perhaps the promo of LP at the end was not so bad afterall.
DoggerFisher
Senior Member
- Messages
- 152
I think it was ok on balance thanks to @charles shepherd for ongoing work. it is certainly a different conversation from 20 years ago even if it is one we don't want to be having. more male callers next time!!
Large Donner
Senior Member
- Messages
- 866
One good thing is that Crawley admitted she deals in "brain training" teenagers who have been staying up to late to get more sleep and she thinks she is dealing with a physical illness. Its not ME then Esther just leave that to real scientists. Oh and another thing, this idea that outside of the Western world they, "don't separate the mind and body," is just an insult to other countries.
There are just as many quack believers in the West, as there are in the East, who make claims way outside of their OWN data using obviously flawed measurements, criteria and results.
Crawley is one of them.
When people fall on their own methods its really about time journalists learned to ask obvious questions.
There are just as many quack believers in the West, as there are in the East, who make claims way outside of their OWN data using obviously flawed measurements, criteria and results.
Crawley is one of them.
When people fall on their own methods its really about time journalists learned to ask obvious questions.
Last edited:
Large Donner
Senior Member
- Messages
- 866
Except when it came to her trial she only used one cohort, tired teenagers, then extrapolates her "results" to Myalgic Encephalomyelitis and used no objective measures of recovery whilst the LP is forcing children to say they are better otherwise they wont get better.
If the U.K. mE organizations don't take the PR seriously, we will never move forward.
I heard this and I can tell the psy are not even close to giving up. They are reframing the story, if you do not know how to handle properly ( with a formal campaign of somebody that knows what they are doing), I see the next 30 years the same. We have an opportunity to move forward but the psy are too organized, and too trained on PR compared to the ME associations. My 2 cents.
I heard this and I can tell the psy are not even close to giving up. They are reframing the story, if you do not know how to handle properly ( with a formal campaign of somebody that knows what they are doing), I see the next 30 years the same. We have an opportunity to move forward but the psy are too organized, and too trained on PR compared to the ME associations. My 2 cents.