A DWP-backed ‘medical scandal’ could be blown wide open
A contentious Department for Work and Pensions (DWP) funded medical research project – described by an MP as possibly “one of the biggest medical scandals of the 21st century” – is close to being blown wide open. Because a call for a public inquiry into it is now getting the support of numerous MPs.
The DWP and the PACE trial
The PACE trial was a controversial research project. It looked into treatment for people living with myalgic encephalomyelitis (ME). You can read Canary articles on the disease here. The PACE trial claimed that patients could improve their illnesses, and sometimes recover, by having cognitive behavioural therapy (CBT) and by using graded exercise therapy (GET).
The results of the £5m trial, part-funded by the DWP, was originally published in the Lancet in 2011. But it was dismissed by many medical professionals and disabled people alike as damaging and ineffective. US government agencies have either downgraded the reliability of CBT and GET or removed them as recommended treatments altogether.
In the UK, CBT and GET are still the NHS’s approved treatment under guidelines from the National Institute for Health and Care Excellence (NICE). But NICE is undertaking a review of this. Recently, more and more academics, medical professionals, and people living with ME have been actively campaigning against the PACE trial and its results. But this has now stepped up a gear with the involvement of a doctor.
A doctor in the house
Dr Sarah Myhill is a practising doctor, author, and campaigner. She has been a consistent advocate for people living with ME. Myhill has written several books and is a seasoned speaker on the disease. She has also been forthright in her views on the PACE trial. And now, she has taken this to the next level.
Myhill is running a campaign calling for a public inquiry into the PACE trial and what she describes as the “abuse” of ME patients due to its results. It’s called Medical Abuse In ME Sufferers, or #MAIMES.
As she told The Canary, she believes the PACE trial has resulted in the abuse of people living with ME because:
People who are powerless, because they haven’t got the energy to fight, are told by doctors who should know better about treatment that actually makes them worse. This is medical abuse. That’s why I’ve called it MAIMES.
The notion of the PACE trial resulting in the abuse of people living with ME seems a valid one when you look at people’s experiences.
Jessica Taylor-Bearman is one such example. She wrote a book called A Girl Behind Dark Glasses about her experience of severe ME and how the medical profession dealt with her and the disease. In the book, Taylor-Bearman describes how she spent a period of time virtually paralysed in hospital. During this period her experiences included;
- Doctors effectively leaving her to vegetate.
- Sexual assault by a carer.
- Doctors giving her energy drinks as a form of treatment.
One consultant told her:
I want to see a big improvement in you, otherwise I will be sending you back to where you came from and you will never get better. You wouldn’t want that, would you?
But moreover, Taylor-Bearman’s experience of medical professional’s approach to ME is symptomatic of countless other people’s. So many have been disbelieved, stigmatised, given incorrect treatment or ultimately told it’s ‘all in their heads’. Children with ME have also been negatively affected. Myhill and others believe much of this stems from the PACE trial. So, MAIMES aims to do something about this.
A public inquiry
Myhill is calling on people to contact their MPs to get them to officially sign up to support the call for a public inquiry. It needs the support of at least 50 MPs. Currently, it has 38. Then Myhill and the campaign organisers will officially approach the health secretary Matt Hancock. They’ll call on him to launch a public inquiry. You can read full details of MAIMES goals and approach below:
So, this is where the public come in. The MAIMES campaign needs people to contact their MPs. They need to explain about the PACE trial and the campaign. Then they need to ask MPs to officially support it. Myhill and her co-campaigners Craig Robinson and Kathryn Twinn have produced all the resources people need to do this. Contact forms, detailed information, and more are all available here.
As Myhill told The Canary:
This has got to be a patient-driven revolution. We need to start that with a proper public inquiry. And to get that public inquiry we need enough MPs to demand that… When we get enough MPs… then we will have our day. It could change the whole management of ME in this country.
Enough is enough
It’s a bold vision but one that’s needed. Because the PACE trial’s implications have been far-reaching. As Dr Keith Geraghty described in a recent review of the trial, CBT for ME patients is:
an idealised narrative model. It exists as a dogmatic model favoured by model promoters. Our review exposes stark weaknesses, inconsistencies and contradictions, both in its theoretical underpinnings and the research said to prove model validity. Our findings suggest the CBM [cognitive behavioural model] is not fit for purpose, as it poorly reflects the accounts given by patients and it ignores the wealth of evidence showing biological, immune and neurological dysfunction in ME… Given that the CBM is cited as the basis for CBT and GET interventions, there is an urgent need for clinicians, therapists and health providers to review this treatment paradigm.
Carol Monaghan MP thinks that the PACE trial was, in part, a DWP money saving exercise. As she said:
One wonders why the DWP would fund such a trial, unless of course it was seen as a way of removing people on long-term benefits and reducing the welfare bill.
But whatever the reasons behind the PACE trial, one thing is already clear. It was and is flawed. Its treatments can be highly damaging to patients. And as Myhill says, it could be considered a form of abuse. Now is the time for people living with ME and their supporters to redress the balance. And that starts with MAIMES.
- Support Myhill’s MAIMES campaign.
- Find out more about the ME Action Network, the ME Association and Fiightback.
- Support the ME Action Network crowdfunder, and the ME Association’s #GoBlue4ME campaign.
- Read more articles on ME from The Canary.
DWP ARCHIVE =
DWP OUTRAGE = “Starving man deemed ‘fit to work’ at just 6st dies” + archive
UPDATE 08 May 2019 – INSANE: DWP decisions continue to defy belief
https://www.thecanary.co/uk/analysis/2019/05/07/dwp-decisions-continue-to-defy-belief/ #DWP #justice #UC #UniversalCredit #PIP #ESA #Corruption
See the archive:
Friday, 11 January 2019
SHOCKING: “Hungry children ‘eating from school bins’ in Morecambe, Lancs” + SCANDALOUS DWP FAILINGS ARCHIVE
HOW £MUCH DOES THE GOVT. GIVE TO THE #ARMS TRADE HERE + ABROAD CONSTANTLY? DESPICABLE! and note judges have just had a huge pay rise: “Rise would see their pay jump from £181,500 a year to £240,000. Judges could reportedly be in line for an annual pay rise of almost £60,000 in a move which could spark fury among public sector workers. 12 Oct 2018 – Judges ‘in line for £60,000 pay rise’ The Independent
Hungry children ‘eating from school bins’ in Morecambe, Lancs BBC News
Siobhan Collingwood said children are arriving at school with empty lunchboxes
A cross-party group of MPs has called on the government to appoint a Minister for Hunger to deal with “food insecurity” especially among children.
Siobhan Collingwood, head teacher of the school in Morecambe, Lancashire, said one in 10 of its pupils came from families using foodbanks.
“Unfortunately I’ve got the faces behind the statistics,” she added.
The Environmental Audit Committee highlighted 2017 Unicef figures showing 19% of children under 15 in the UK live with adults who struggle to buy food.
The government said the number of children living in workless households is at a record low.
Ms Collingwood said there were currently 35 children at her school whose families are supported by foodbanks, adding: “It’s probably higher because they are the ones we know about.”
“When children are food deprived it alters their behaviour and they do become quite food obsessed, so we have some children who will be stealing fruit cores from the bins,” she added.
“We have children who have nothing in their lunch boxes and children who are just fixated upon food.”
- MPs want hunger minister role introduced
- Fighting holiday hunger in Birkenhead
- Poor pupils ‘filling pockets with food’
The head teacher said it was “heartbreaking” and added that parents had been “arriving at school literally bursting into tears telling me they have no means of feeding their children”.
Ms Collingwood said she had noticed more problems since the introduction of Universal Credit.
“Families are coming in telling me they are routinely loaning food to each other, my day-to-day experience is telling me this is a growing problem.”
A Department of Work and Pensions spokeswoman said that, since 2010, one million people had been lifted out of absolute poverty – including 300,000 children.
She added: “We already provide support through free school meals and our Healthy Start Vouchers.”
MUST SEE LINKS! “Revealed: DWP’s secret, ‘financially devastating’ proposals for benefits appeals” + “Terminally ill Northampton woman has appeal over disability benefits refused” + “Former DWP ministers could face police investigation over fit-to-work tests + MORE
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“Former DWP ministers could face police investigation over fit-to-work tests” + BOURNEMOUTH SURGERY FAILING PATIENTS + WAGING WAR ON THE SICK AND DISABLED + more
“Stop Universal Credit” day is 01 December: “The DWP is facing the wrath of thousands of people this week”
November 27, 2018by
The DWP is facing the wrath of thousands of people this week Steve Topple 26th November 2018 0 0 comments https://spkt.io/a/149301 SPONSORED BY CASUMO The Department for Work and Pensions (DWP) is facing the wrath of potentially thousands of people this week. … Continue reading
UNIVERSAL CREDIT FAILS: May’s DWP claims at PMQs were debunked before she began 25 Oct. ’18 + archive
October 25, 2018 by
May’s DWP claims at PMQs were debunked before she began AUDIO: LISTEN to this article: https://spkt.io/a/128181 At Prime Minister’s Questions (PMQs) on Wednesday 24 October, Theresa May made some bold claims about the Department for Work and Pensions (DWP). Sadly … Continue reading
SCRAP “UNIVERSAL CREDIT”!: The DWP is now facing the wrath of five million workers 18 Sept. 18 + archive
SCANDALOUS! “The DWP just revealed the eye-watering millions it paid out to private companies” [don’t forget the highly questionable “Prospects Workfair”] – JULY 26TH, 2018 + archive
The DWP sneaked out a damning admission just before parliament closed for the summer – The Canary 26 July 2018 + archive
DWP WRONG AGAIN: “The #DWP just admitted a court case it lost will affect thousands of people” AUDIO + ATOS + SANCTIONS DEATHS + archive
SHOCKING: “Hundreds losing disability benefits in Personal Independence Payments shake-up” + The DWP has been caught trying to ‘coerce’ GPs into saying their patients are fit-for-work – 29 May 2018
DISGRACEFUL: “The DWP left one man so ‘destitute’ that the police had to step in to help him” – The Canary
The DWP is in court again and it could ‘open the floodgates’ for countless disabled people – the Canary
OUTRAGEOUS: The DWP has been caught trying to ‘coerce’ GPs into saying their patients are fit-for-work – the Canary – PEOPLE ARE DIEING
Desperate disabled gran attempted suicide after brutal DWP cuts left her fearing she would lose her home 18 Nov 17 D. Mirror + MUST SEE LINKS
Revealed: DWP’s secret, ‘financially devastating’ proposals for benefits appeals 0 By John Pring on April 21, 2016 Benefits and Poverty Listen The Department for Work and Pensions (DWP) has drawn up secret plans…