It shows how people are influenced by these things
Yes. I'm disappointed. Expected better from her.
Science Media Centre with Holgate/Crawley/McCrone - more anti-patient prejudice? (FITNET)
- Thread starter Esther12
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It shows how people are influenced by these things
Yes. I'm disappointed. Expected better from her.
Daisymay
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I've asked AfME if that comment from Julia Newton relates to FITNET or was it a general quote from the past which they slotted into their article.
Woolie
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Sure, the cause of the emotion could very well be physiological.
I suspect this is EC's way of shifting her stance towards what she may suspect looks like becoming the winning side, given latest biological research, and the exposure of PACE. A political animal to the last I imagine.
ZeroGravitas
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It did! On page 18 of today's (erm... yesterdays) iPaper. Great work by Scott.
OMF and #MEAction Network tweeting it:
Oh right, sorry. Yes of course 63% 'recovery' is meaningless. I guess I took that for granted. But with the criterion being so loose (within 2 SD of controls), I'm surprised more of the usual treatments group weren't also straight into that, on the first review (and why they've been quoting 8% when the graphed data, in follow up report, showed closer to double that.) I kind of assumed that the starting 0% recovered data point is actually just an assumption, that if they are in the trial they are ill, but might involve different measurement criterion to the later assessments, as PACE did. Sorry, didn't manage to digest both those Dutch papers. Definitely a lot of non-true-CFS persons included too, as you say.
I'd would have said that providing advice, support and 'home appointments' are the redeeming factors of this FITNET fiasco. But are you saying these things are already provided (to an extent, in some places)? That's good, if so. And yes, who would want to be a parent in such an impossible situation. Eek. :-\
For me, the whole: 'it's no miracle cure, but this is the best option we have available NOW' rings so empty, when all FITNET actual is, is a fairly modest trial that will take 6 years to report back. That's not 'now', that's not a stop-gap emergency measure, as it will change nothing for almost everyone. How long as that been a argument for psychological interventions in the past, already? Decades? As has been said, I fully expect these new, precise biomarker/causative findings, within the next year or so, will blow a hole right through the FITNET, etc, approach.
Countrygirl
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@Effi
Thank you!
Been working on this all day and now have an impossibly long 1700-word long section on Quickfix ( ah!I mean Fitnet...my brain makes keeps throwing up the name of a local garage) for our letter.
To be fair to NICE, the fatigue should be debilitating and feature post-exertional something-or-other. But Crawley always ignores the post-exertional aspect and characterizes ME/CFS as 3 months of debilitating fatigue. It's a good reason to object to her involvement in selecting patients.
The symptoms of anxiety and OI have nearly complete overlap. The difference is that a patient should experience the feeling of anxiety (provoking the episode) for a diagnosis of anxiety. But quacks tend to ignore that requirement in favor of claiming that OI patients are just repressing their awareness or acknowledgement of their presumed anxiety.
Cheshire
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Jenny TipsforME
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It may be emptybut seems to work on journalists. seems to come across as reasonable.
I think it is reasonable for someone like me to say something like that. In fact on my blog i do say something quite similar eg this is a biological disease but here are a few tips that may help you manage it in the meantime. BUT I'm a lone patient with no power to conduct large scale research to actually get to the root ofthe problem.
EC on theother hand is using something like £1,000,000 of public money on a technique already shown to be ineffective in a trial which will take years (so not a quick, it will do for now strategy) in the context of other rapidly evolving research which appears to be unearthing the actual root cause. This can't be viewed as reasonable. Will the results seem laughable by the time they're published?
Countrygirl
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I don't think the author quite 'gets' it.
He advises that people change their lifestyle to combat the illness, take time to enjoy life, ,promote' sports....................
Thank you Esther for misleading France as well..........................
May we Brits send out apologies to the rest of the world for not being able to control the embarrassing nonsense that spews out the mouths of our BPS proponents and leading your doctors down the garden path once again.................
Molly98
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I have just watched the Dr Bateman Global Progress Report giving an overview of recent developments and scientific research from the two conferences in Sweden and the US-
It is fantastic well worth watching, made me feel very positive and hopeful after 2 days of feeling very frustrated and quite despairing at British media and medical situation.
I think this video is an excellent way of us letting the science do the talking.
I am wondering whether the strategy of each of us consistently commenting on articles, in the Newspapers on social media, with one small sentence and a link to this video may be far better than trying to enter into debate or trying to argue our point, which is seen as just an opinion.
Perhaps a short sentence just pointing out how far behind and backwards this BPS CBT approach is compared to rest of the world and then the link.
Or if people want evidence go to link...
What they fail to tell you - go to link...
or what a waste of tax payers money...
or how deceptive and misleading and public and patients being mislead..
I am going to repost in a couple of other threads just to spread the link and idea more widely. So sorry if you see this repeated.
This is what we need the public and media to see the evidence themselves, it speaks for itself no exhausting arguments needed. Us just keeping it short, consistent and concise, people just need the correct information and we repeat and repeat and repeat ( that's what they do in marketing isn't it!)
It is fantastic well worth watching, made me feel very positive and hopeful after 2 days of feeling very frustrated and quite despairing at British media and medical situation.
I think this video is an excellent way of us letting the science do the talking.
I am wondering whether the strategy of each of us consistently commenting on articles, in the Newspapers on social media, with one small sentence and a link to this video may be far better than trying to enter into debate or trying to argue our point, which is seen as just an opinion.
Perhaps a short sentence just pointing out how far behind and backwards this BPS CBT approach is compared to rest of the world and then the link.
Or if people want evidence go to link...
What they fail to tell you - go to link...
or what a waste of tax payers money...
or how deceptive and misleading and public and patients being mislead..
I am going to repost in a couple of other threads just to spread the link and idea more widely. So sorry if you see this repeated.
This is what we need the public and media to see the evidence themselves, it speaks for itself no exhausting arguments needed. Us just keeping it short, consistent and concise, people just need the correct information and we repeat and repeat and repeat ( that's what they do in marketing isn't it!)
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How many participants will be in the FITNET study?
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How many participants will be in the FITNET study?
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JoanDublin
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AfME say 'more than 700 children and young people'
JoanDublin
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Sorry forgot to include link in reply
https://www.actionforme.org.uk/news/new-fitnet-trial-announced-for-young-people-with-me
Large Donner
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As many as they can possibly find that meet the inclusion criteria whilst meeting the recovered criteria at the same time.
AndyPR
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So there will be no record of adverse events then - I expect this to be spun as no evidence of harm from FITNET. Extrapolating, a patient could become bed bound and it doesn't need to be reported. (Image from a post on the IiME Facebook group).
From page 22 of http://www.nets.nihr.ac.uk/__data/assets/pdf_file/0007/170962/PRO-14-192-109.pdf
From page 22 of http://www.nets.nihr.ac.uk/__data/assets/pdf_file/0007/170962/PRO-14-192-109.pdf
I've had a response from the BBC following my complaint. Here it is:
After reading their response you would be forgiven for thinking that I asked them not to report on it. I very specifically did not do that. What I actually did was ask them to make their coverage balanced so that they include people with differing perspectives in the story and so that they include the long-term follow-up on the trial in Holland.
They completely missed the point and/or fobbed me off.
After reading their response you would be forgiven for thinking that I asked them not to report on it. I very specifically did not do that. What I actually did was ask them to make their coverage balanced so that they include people with differing perspectives in the story and so that they include the long-term follow-up on the trial in Holland.
They completely missed the point and/or fobbed me off.
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BBC response to @Cheesus :
"..The BBC cannot ignore stories like this and has reported a broad range of CFS / ME research - including striving to find a biological cause in www.bbc.co.uk/news/health-31644618; the difficulties along the way in www.bbc.co.uk/news/health-15017660; the threats sent to people researching the field in www.bbc.co.uk/news/science-environment-14326514; and why discussing the disease has become so toxic in www.bbc.co.uk/news/health-14883651."
Wow. That response it utterly outrageous. Call themselves journalists? The alleged 'threats' have been debunked in a Court of Law, Appeal Tribunal.
The FITNET study has not actually been done yet. The BBC was not reporting results from Crawleys study, but regurgitating misinformation about much earlier Dutch studies, not reporting the null result at follow up.
The positive media blitz looks more and more like a recruiting drive for the UK FITNET. The study wants 700 participants from the Bristol/Avon/westcountry area.. PACE had trouble recruiting 600 odd nationwide.
Do you have a link to your letter to the BBC, Cheesus?
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BBC response to @Cheesus :
"..The BBC cannot ignore stories like this and has reported a broad range of CFS / ME research - including striving to find a biological cause in www.bbc.co.uk/news/health-31644618; the difficulties along the way in www.bbc.co.uk/news/health-15017660; the threats sent to people researching the field in www.bbc.co.uk/news/science-environment-14326514; and why discussing the disease has become so toxic in www.bbc.co.uk/news/health-14883651."
Wow. That response it utterly outrageous. Call themselves journalists? The alleged 'threats' have been debunked in a Court of Law, Appeal Tribunal.
The FITNET study has not actually been done yet. The BBC was not reporting results from Crawleys study, but regurgitating misinformation about much earlier Dutch studies, not reporting the null result at follow up.
The positive media blitz looks more and more like a recruiting drive for the UK FITNET. The study wants 700 participants from the Bristol/Avon/westcountry area.. PACE had trouble recruiting 600 odd nationwide.
Do you have a link to your letter to the BBC, Cheesus?
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And here is the link again for those who have not yet complained:
https://ssl.bbc.co.uk/complaints/forms/?lang=en&reset=&uid=965457062
There is an option to select you live abroad, so do not assume that just because you are not in the UK that you cannot complain to the BBC. It seems you can.
https://ssl.bbc.co.uk/complaints/forms/?lang=en&reset=&uid=965457062
There is an option to select you live abroad, so do not assume that just because you are not in the UK that you cannot complain to the BBC. It seems you can.