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

arewenearlythereyet

Senior Member
Messages
1,478
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.
I think I've worked out where her figures have come from
According to the office of national statistics in 2015 there were 8,559,540 children in primary and secondary school education.

So if she uses the 85,000 children with ME that sort of works out at 1% or 0.99%

https://www.gov.uk/government/uploa...ent_data/file/552342/SFR20_2016_Main_Text.pdf
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
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)
Not just the UK. Think other places, including Australia. Sign me up, depending on the wording. Keep it factual and short if you want the most numbers to agree to it.
 
Messages
70
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.
I had already (yesterday) found an old article online asked the Readers’ Editor to remove/amend the misleading (2011) headline about death threats in the light of the 2016 FOI Tribunal ruling of lack of evidence of any such threats.
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
Messages
3,061
Location
UK
http://www.meassociation.org.uk/201...an-apology-to-mr-phil-parker-4-february-2011/

NHS National Research Ethics Service issue an apology to Mr Phil Parker,


4 February 2011

This afternoon, we received a further letter from the NHS National Research Ethics Service about the pilot study which aims to compare the Lightning Process with specialist medical care for children with ME/CFS. It contains an apology to Mr Phil Parker for any embarrassment or difficulties caused by previous publication of inaccurate information about his business.


Here is the text of the letter:

Dear Dr Shepherd

Assessing the feasibility and acceptability of comparing the Lightning Process with specialist medical care for Chronic Fatigue Syndrome (CFS/ME) – pilot Randomised Controlled Trial

Further to my letter of 6 January 2011. I would advise you that following the publication of the South West 2 REC Minutes, Mr Phil Parker has contacted NRES to point out an error in the documentation. Whilst it is accepted that the Minutes are an accurate reflection of the discussions held, the consideration of one issue was not accurately presented to the REC for its consideration. The Minutes state that

“3. The Lightning Process (LP) is subject to trading standard and Advertising Standards Authority (ASA) enquiries. Complaints that Mr Parker made unsubstantiated claims of effectiveness have been upheld by the ASA and this is in line with data from the ME society indicating it is effective (or ineffective) or harmful as other therapies. It was noted that the judgement of the ASA was made after the submission of the application to the ethics committee. And corrective action had been taken.”

Mr Parker has confirmed that the complaint that was investigated by the Advertising Standards Authority (ASA) did not concern him but rather an entity called “WithInspiration” with whom he has no financial, employment or other interest. It is a private business managed by a registered Lightning Process Practitioner and he had no ability to influence the day to day management or marketing of this business. The complaint made and subsequent adjudication was not related to Mr Parker and he has never been the subject of any complaint investigated by the ASA or by trading standards.

NRES has verified this information at http://www.asa.org.uk/Asa-Action/Adjudications/2010/6/Withinspiration/TF_ADJ_48612.aspx

NRES would wish to apologise to Mr Parker for any embarrassment or difficulties which may have been caused by this incorrect information. NRES is organising for the SW2 REC to formally process an addendum to their minutes to correct this inaccuracy.

If you have organised any publication of the minutes of the SW 2 REC meeting, NRES would be grateful if you could publish this information, together with the NRES apology, to reflect the correct position.

Yours sincerely

JOAN KIRKBRIDE
Head of Operations, England

--------------------


However, in March 2013....

https://www.asa.org.uk/rulings/phil-parker-group-ltd-a12-210374.html

ASA Adjudication on Phil Parker Group Ltd

27 March 2013

  • Upheld
  • Internet (on own site)
  • 27 March 2013
Ad description

The website www.lightningprocess.co.uk, visited on 9 October 2012, was headed "Lightning Process - Phil Parker's Personal View". Text stated "This is my personal site (for the official one click here) all about the Lightning Process' development and my journey with it from a small clinic in North London to it being practiced across the world. In it you'll find stories of those who inspired me with how they used the mind body connection to get over ME/CFS, MS, Depression, Anxiety, Chronic Pain and Eating Disorders and much more".

Issue
Hampshire Trading Standards challenged whether the references to "ME/CFS, MS, Depression, Anxiety, Chronic Pain and Eating Disorders" misleadingly implied that the Lightning Process could treat or cure those conditions.

Response
Phil Parker Group Ltd said the site was not owned by them but by Phil Parker personally and that nothing was being sold from the site, which was only for discussion and opinions. They said it did not include links to Lightning Process practitioners and their websites, did not provide information about how to take the training with either Phil or the team, did not use the corporate branding and logos which were used on their commercial sites and did not link to the shop where their products were available. They said the site had no commercial intent and was not a marketing communication within the remit of the Code.

They said there was an incredible amount of information about the Lightning Process on the internet, some of which was accurate and some of which was not, and that Phil Parker wanted to provide people with correct information about it. They considered it reasonable that Phil Parker, who had designed the Lightning Process and had qualifications relevant to the treatment of CFS/ME, was allowed to share his views on the Lightning Process in relation to CFS/ME, and other conditions, on his personal website. They said that to prevent Phil Parker discussing his opinions about the Lightning Process on the site would infringe upon his freedom of speech. Nevertheless, the challenged claims were removed from the site in February 2013.

Assessment

Upheld


The ASA noted that Phil Parker Group did not believe that the Code applied to Phil Parker's "personal" website. The Introduction to the UK Code of Non-broadcast Advertising, Sales Promotion and Direct Marketing (the Code) stated that the Code applied to "Advertisements and other marketing communications by or from companies, organisations or sole traders on their own websites, or in other non-paid-for space online under their control, that are directly connected with the supply or transfer of goods, services, opportunities and gifts, or which consist of direct solicitations of donations as part of their own fund-raising activities".

We noted that the website's URL was "www.lightningprocess.co.uk"; that there was an active link to the official Lightning Process website (www.lightningprocess.com); that the official Lightning Process website was headed "Phil Parker Lightning Process® - the mind-body connection training"; and that the content of the website was almost exclusively about the Lightning Process. We considered that Phil Parker was inextricably linked with the Lightning Process brand and that the content on the website would, as far as it related to the Lightning Process, be understood by consumers as a promotion by Phil Parker of his commercial proposition, in which he had a financial interest. We therefore considered that that content was directly connected to the supply of goods and services and was subject to the Code.

We noted that the home page of the website referred to Phil Parker's "journey" with the Lightning Process and to the stories that consumers would find within the site about those who had used the "mind body connection" to "get over ME/CFS, MS, Depression, Anxiety, Chronic Pain and Eating Disorders and much more". We considered that visitors to the website would infer from the home page that the Lightning Process could be effective in treating each of the conditions listed.

We had previously considered a complaint about the official Lightning Process website which made claims about the use of the Lightning Process in the treatment of various medical conditions, including ME/CFS, MS, depression, anxiety, chronic pain and eating disorders. In our adjudication we concluded that we had not seen a suitably robust body of evidence to demonstrate the efficacy of the Lightning Process in the treatment of any of those conditions. We also concluded that references to medical conditions, for which medical supervision should be sought, including MS, depression and eating disorders, had breached the Code, because of the risk that they might discourage readers from seeking essential treatment for those conditions. Phil Parker Group had said Phil Parker was a registered hypnotherapist, osteopath and psychotherapist and, while we noted that he might be qualified to treat conditions such as depression, we also noted that the official Lightning Process website (which was linked to from the home page of the "personal" site) was intended to direct prospective customers to find their local Lightning Process practitioner, who need not be similarly qualified.

Because we considered that the website was subject to the Code, and because we had not seen evidence to show that the Lightning Process could treat ME/CFS, MS, depression, anxiety, chronic pain and eating disorders, we concluded that the website was likely to mislead consumers regarding the benefits of the Lightning Process in the treatment of people with those conditions. Furthermore, because the mention of MS, depression and eating disorders could discourage readers from seeking essential treatment under the supervision of a suitably qualified health professional, we concluded that the reference to them was misleading for that reason also.

The website breached CAP Code (Edition 12) rules

3.1 (Misleading advertising), 3.7 (Substantiation) and 12.1 and 12.2 (Medicines, medical devices, health-related products and beauty products).


Action

The claims must not appear again in their current form. We welcomed the decision to remove the claims. We told Phil Parker Group not to make claims on websites within their control that were directly connected with the supply of their goods and services if those claims could not be supported with robust evidence. We also told them not to refer to conditions for which advice should be sought from suitably qualified health professionals.

CAP Code (Edition 12)
12.1 12.2 3.1 3.7
 
Last edited:

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
Messages
3,061
Location
UK
I'm confused.

My brain says that what your post says is that the NHS have apologised to PP for saying that something happened which it appears did in fact happen?

hence my confusion

edit - aha, that timey wimey thing again, pesky stuff, it seems they apologised in 2011 for something that didn't in fact happen until 2013 (legally).


Yes, the letter from JOAN KIRKBRIDE is dated 2011, the ASA Ajudication is 2013.

I'll highlight the dates in colour.
 

Countrygirl

Senior Member
Messages
5,491
Location
UK

Hutan

Senior Member
Messages
1,099
Location
New Zealand
Which begs me to ask, yet again: MEA ... stop this CMRC nonsense please???
They read to me like they were distancing themselves from this Creepy Crawley-ness.

At the very very least, is it not time for a new Vice-Chair of the CMRC?

(Hmm, Vice-Chair, sounds so close to the Naughty Chair)

I mean, it's normal in committees for the people in charge to change from time to time. Is there not someone else who could have a turn? Is there any democratic process in the CMRC for selecting its leaders?

EC gets a lot of credibility from holding a position in the CMRC - maybe enough members are embarrassed with what is essentially an endorsement of her work that they might decide it's time for a change.
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
Messages
3,061
Location
UK
For those not aware, Parker is working on a PhD thesis on addiction (London Metropolitan University School of Psychology):

https://www.philparker.org/so-grateful/

and has an addiction recovery business:

https://www.philparker.org/addiction-recovery-clinic/

The Rediscovery Process (TRP) is a ‘non 12-step’ programme designed to make getting your life back, for good, simpler and easier than ever before.

Based on Phil’s PhD research it has already helped many become free from their long-term addictions to:
  • Cocaine and Crack
  • Heroin and other opiates
  • Cannabis
  • MDMA
  • Crystal Meth
  • Alcohol
For full details on how it works, success stories and pricing please visit TRP website.

------------

"Based on Phil’s PhD research" reads as though he might already have been awarded a PhD, but I don't think he has yet.
 

Wonko

Senior Member
Messages
1,467
Location
The other side.
Based on the little on the website it looks a just little bit familiar, but if he can "cure" people from the clutches of M.E. using these "techniques" then crack should be easy.

Of course if he can't then rather than dealing with a load of brainwashed disabled physically limited people he could be dealing with a load of crackheads in withdrawal - which should be fun, for some of those involved anyway.