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

[Wonko]

I also noticed listening to the radio programme and reading the papers, we seem to now be quoting 190k people with ME (thought it was 250k?), in the same article as saying 1% of all children. Shame it's not Jeremy Paxman doing the interviewing...he would have spotted that one.

Unless they've been lying to us all along and there are only 19 million people in the UK - or 1.9 million, maths isn't my friend right now.

How would we know, has anyone actually counted?

 

[Orla]

https://twitter.com/i/web/status/910781941892489216

 

[Cinders66]

I know it's been posted before..let's post it again... this is a long thread and this provides context:

http://www.sayer.abel.co.uk/MESNORFOLK/LP.html

LP DOES NOT WORK FOR ME

Thanks, I have been trying to get the real low down on LP for years.

 

[Dx Revision Watch]

Anecdotal only, but when my son first became ill, there were two pupils in a school of 1000 pupils with a firm diagnosis and in receipt of LEA home tuition. I did read of a cluster of 6 or 7 pupils in a secondary school (possibly Norfolk area) but at the time, that was considered an unusually high number.

 

[Dx Revision Watch]

Unless they've been lying to us all along and there are only 19 million people in the UK - or 1.9 million, maths isn't my friend right now.

How would we know, has anyone actually counted?

I don't think Department of Health figures are compiled. I don't recall any Parliamentary Questions responding with compiled figures.

For some years, the figures that used to be quoted for the UK were an "estimated 250,000" of which an "estimated 80-85,000" were children.

Crawley appears to vary the prevalence in children according to which way the wind is blowing. It would be very interesting to compare diagnosis rates in the area for which she is responsible with diagnosis rates in comparable areas of England.

Given the implications for non school attendance and the need for children to be referred for a diagnosis, it should be easier, I would have thought, to collate prevalence rates in children than in adults.

 

[slysaint]

EDIT: is someone able to cache this please?

I've saved it on my harddrive as have some others

 

[RuthT]

Well she'll be quite surprised when a load of polite scientists, researchers, academics and journalists turn up then.

I have checked the #r4today twitter feed and there is no abuse through the morning. I have asked @bbcradio4today to justify the framing of the whole interview in an abuse context without any justification beforehand as evidenced by lack of abusive response. This should have been known to Tom Feilden who was responsible for the piece. I have also raised with Ofcom and BBC DG and Science Editor as inappropriate interview and bad journalism, impugning mecfs patients with no right to reply re science or abuse allegations.

 

[Mrs Sowester]

I've got the highest rated comment under the Daily Mail article, now I'm not sure how I feel about that, kind of icky? A little sullied? Conflicted, so conflicted...

 

[Esther12]

Not as bad as you'd think.

I thought that Action for ME's statement was terrible. They need to shut themselves down.

We are extremely surprised to see that the Lightning Process, described by its proponents as “a training course” that employs tools including “gentle movement, meditation-like techniques and mental exercises” offers improvement for some young people with M.E.

Does it offer improvement? Why would they be surprised that a 'treatment' like this leads to more positive answers on subjective self-report outcomes.

We also consistently advise people to examine with scepticism any treatment, therapy or other approach which claims to offer a cure, has not been subject to research published in respected peer-reviewed journals and requires the payment of large sums of money.

What about when it has been subject to research published in respected peer-reviewed journals?

They've not exactly been 'encouraging' of all the patient advocates who fought to pick apart the bullshit claims made by the PACE trial, that Action for ME helped run.

The fact that people with M.E., and parents seeking treatment options for their children with the condition, even consider a treatment approach that has been ruled by the Advertising Standards Authority as “likely to mislead consumers regarding [its benefits]” shows just how desperate the situation is for these vulnerable patients.

This is due to the fact that there are no treatment approaches that offer reliable and significant improvements for everyone with M.E.

I don't think it is due to that. Lots of conditions have effective and useful treatments which don't offer reliable and significant improvements for everyone. That's not at all suprising. What's unusual about ME is that we've lost so much time and money to junk science like PACE, SMILE, etc, we've got no good evidence that there's a treatment approach that offers reliable and significant improvements to anyone.

Action for ME are not willing to be honest about that. They seem desperate to leave as much room as they can for quackery, while acting as if they're speaking out about it.

 

[Yogi]

W

I have checked the #r4today twitter feed and there is no abuse through the morning. I have asked @bbcradio4today to justify the framing of the whole interview in an abuse context without any justification beforehand as evidenced by lack of abusive response. This should have been known to Tom Feilden who was responsible for the piece. I have also raised with Ofcom and BBC DG and Science Editor as inappropriate interview and bad journalism, impugning mecfs patients with no right to reply re science or abuse allegations.

Well done for that. Keep us posted.

 

[RuthT]

Again apols if this has been posted already.

I notice EC can be heard on record as saying that in children CFS (sic) '.. is more genetically heritable'. I am not aware of any science that underscores this assertion. I think she needs to prove that this is so.

http://www.bbc.co.uk/programmes/p05gsrnk

Chronic fatigue: A new approach?


EDIT: is someone able to cache this please?

W


Well done for that. Keep us posted.

Not likely to hear further, but have been petitioning BBC PM for fair coverage, also analysis of the science by Dr Adam Rutherford, Inside Science and/or Tim Harford, More or Less. Also asked them to apologise to Stephanie Flanders for ambush/set up interview.

 

[arewenearlythereyet]

I've got the highest rated comment under the Daily Mail article, now I'm not sure how I feel about that, kind of icky? A little sullied? Conflicted, so conflicted...

Dirty is how I describe it

 

[slysaint]

Q: If part of the LP is to deny symptoms how can any of the responses on the questionnaires be regarded as reliable?

 

[NelliePledge]

I've got the highest rated comment under the Daily Mail article, now I'm not sure how I feel about that, kind of icky? A little sullied? Conflicted, so conflicted...

no no no it is great like a resistance agent infiltrating the enemy

and very sad to say that the DM is doing a lot better on ME issues than the so called liberal Grauniad

my Dad will be turning in his grave he brought me up to be a Grauniad reading leftie but they have let us down very badly

 

[TreePerson]

Anecdotal only, but when my son first became ill, there were two pupils in a school of 1000 pupils with a firm diagnosis and in receipt of LEA home tuition. I did read of a cluster of 6 or 7 pupils in a secondary school (possibly Norfolk area) but at the time, that was considered an unusually high number.

Likewise during the time that my three children were at a similar sized secondary school – there were only two cases that they reported to me. Their time there spanned 10 years.

 

[lilpink]

I've saved it on my harddrive as have some others

Just so long as she can't deny she said it.

 

[lilpink]

I have checked the #r4today twitter feed and there is no abuse through the morning. I have asked @bbcradio4today to justify the framing of the whole interview in an abuse context without any justification beforehand as evidenced by lack of abusive response. This should have been known to Tom Feilden who was responsible for the piece. I have also raised with Ofcom and BBC DG and Science Editor as inappropriate interview and bad journalism, impugning mecfs patients with no right to reply re science or abuse allegations.

Excellent. They should be held to account for this sloppy and prejudicial 'journalism'.

 

[Jenny TipsforME]

Press release from #MEAction:

FOR IMMEDIATE RELEASE: 21/09/17

CONTACT: press@meaction.net

#MEAction Rejects the Findings of the SMILE Trial of The Lightning Process for Chronic Fatigue Syndrome

Trial Uses Flawed Methodology That Can Lead To False Positives

Following the release of the results of the SMILE trial, Ben HsuBorger of ME Action said: “The SMILE trial of the Lightning Process, a known quack treatment, for ME/CFS, used unblinded treatment coupled with subjective, self-report outcomes. It illustrates that such serious design flaws can produce an apparently positive result for almost any treatment approach. It comes as no surprise that this trial was conducted by the same team that promotes the use of graded exercise therapy and CBT for ME/CFS, based on the same flawed trial practices. ME/CFS is a serious neuro-immune disease as highlighted by the work of Ron Davis, Naviaux, Montoya, Mark Davis and others. It cannot be treated effectively by behavioural interventions. We reject all three treatments and reiterate our call for biomedical research.”

#MEAction is an international network of patients empowering each other to fight for health equality for Myalgic Encephalomyelitis.

 

[Snowdrop]

no no no it is great like a resistance agent infiltrating the enemy

and very sad to say that the DM is doing a lot better on ME issues than the so called liberal Grauniad

my Dad will be turning in his grave he brought me up to be a Grauniad reading leftie but they have let us down very badly

Organise.

I know a few people in the UK who would be willing to sign a statement calling out the Guardian for their poor reporting on ME (possibly depending on the wording of such)

Lots of people saying the same thing to them might at least cause them to pause for a moment and consider.

PS I know how naughty I am. I suggest other people do stuff. Alas, that's almost all I can do. I know that's true for others too.

 

[alex3619]

Rather worrying actually. I hate it when I get the nature of time wrong and forget when I am.

I have no time sense. Its all one big Dreamtime for me. I have to pay attention to clocks and calendars to get it right.