Thursday, 24 July 2014

False Allegations of Child Abuse in Cases of Childhood Myalgic Encephalomyelitis (ME)

A peer reviewed academic article by Jane Colby, Executive Director of the Tymes Trust

July 2014


There is no cure for ME (Myalgic Encephalomyelitis). In its absence, management regimes are prescribed, typically based on cognitive behavioural therapy (CBT) and graded exercise therapy (GET). In the case of children this may involve the application of Child Protection powers to enforce treatment. NICE confirms that patients may withdraw from treatment without effects on future care, but parents who decline, or withdraw children from, management regimes, which may have worsened their illness, can find themselves facing investigation for child abuse or neglect, or have their child forcibly confined to a psychiatric unit. Tymes Trust has advised 121 families facing suspicion/investigation. To date, none of these families has been found to be at fault. Subsuming ME under the heterogeneous term Chronic Fatigue Syndrome (CFS) has confounded research and treatment and led to disbelief over its severity and chronicity. As evidence points to persistent viral infection, recommendations have been made to separate ME from CFS. International consensus criteria for ME emphasise post-exertional deterioration as distinct from fatigue. If the child with ME deteriorates under management regimes, re-diagnosis with a psychiatric condition can mask treatment failure and lead to blame attaching to the parent. A more constructive redeployment of resources away from Child Protection investigations into appropriate practical support for these seriously unwell children, should be developed.

Biographical note

Jane has worked with the All Party Parliamentary Group on ME and the All Party Parliamentary Group on Abuse Investigations in regard to the issues raised in this paper. Jane is a former Head teacher. She was co-author of the largest epidemiological study of ME to date, and prepared the questionnaire for the BBC Panorama ME documentary. She was a member of the Chief Medical Officer’s Working Group on CFS/ME. A former severe ME sufferer, Jane is also the Executive Director of Tymes Trust.

The full article can be downloaded as a PDF file from –

The Tymes Trust -

Monday, 14 July 2014

Disability Benefits

Although not specifically about ME, I thought that the following two rather worrying articles regarding disability benefits might be of interest.

John Niven: How can Cameron sleep when 10,000 people die weeks after being declared fit for work by Atos?

THEY might be on opposite sides of political spectrum but Stalin and IDS have a lot in common says JOHN.

IT has been a long time since I wept with rage over a news story but I wept last week at the utter catastrophe of the latest Atos development.

This was the news that, in 2011, more than 10,000 people died within six weeks of being declared fit for work by Atos – an appalling, unthinkable number.

Many of these people died from existing conditions that meant they should never have been declared fit for work.

People like Linda Wooton, from Essex, a heart and lung transplant patient whose claim for a weekly benefit payment of £108.05 was rejected when Atos declared her fit for work. She died from chronic renal failure just nine days later.

Or Mark Wood, from Oxfordshire, who was found fit for work despite suffering from multiple mental problems including Asperger’s syndrome. After his benefits were slashed he starved to death, weighing just 5½ stone when he died.

Or David Coupe, from Derbyshire, the cancer sufferer who had his benefits reduced after Atos said he could work. He and his wife were living on just £71 a week between them in the last year of his life.

Many others met more violent ends – like Edward Jacques, whose £90 a week in benefits was stopped after he too was found fit for work. Edward had HIV, hepatitis C and a history of self-harm and depression. Financially crippled and terrified, he took a fatal overdose.

The coroner in his case said his medical assessments had been “crude”.

Then there’s Tim Salter, who had his £30-a-week incapacity benefit axed after Atos found him fit for work.

Tim was blind and suffered from agoraphobia. He hanged himself.

The coroner later said: “A major factor in his death was that his benefits had been greatly reduced, leaving him almost destitute.”

I have been in that room. My brother took his own life nearly four years ago.

I remember the sad drift of brown envelopes on his living room table with their hellish contents, the red letters: “If you do not pay by… If you are unable to pay… If you do not contact us…”

Those envelopes are a recurring feature in the tableau of suicide, the footprints left by the most desperate in our society, people who are – literally – at the end of their rope.

Several Atos whistleblowers have spoken of how their work was essentially “quota driven”. They were urged to meet targets, to find a certain number of people were fit for work.

I am reminded of another place that ran on the quota system – Stalin’s Russia, a place where unthinkable numbers of deaths became absolutely routine.

Stalin was the man who famously said that while one death might be tragedy, a million was a mere statistic.

Ah, those on the right will say, but the state just cannot afford the continually rising numbers of unemployed, of people who are content to live a life on benefits.

Just as the state cannot afford huge bills for public sector workers, just as we cannot afford the increasing pensions burden.

But we can afford Trident.

We can afford to take a flippant attitude towards big corporations engaging in tax evasion on a monumental scale.

We can afford bailouts for greedy, irresponsible bankers.

Remember, Atos are not bogeymen who materialised from nowhere.

They were hired by our Government, by the Department for Work and Pensions, by Iain Duncan Smith, who thought, “This is a good thing. Practically, morally, this is a good way to go.”

We are not at a critical juncture of political disagreement so much as we are at a critical juncture of philosophical disagreement. Where are we headed? What do we think it is right to spend our money on? How should we treat people? Glib as it sounds, what do we believe in?

I believe we can afford people like Linda, Tim, Edward, David and Mark.

I believe our current Government thinks of people like them in terms of “collateral damage” in their crusade against benefit fraud.

I believe this is an insult to the dead and their families.

Here’s what I struggle to believe – that the idiotic crusade of reducing benefit fraud is worth a single human life. That we have a Prime Minister who can look at cases like these and still sleep at night.

We could have helped Tim, Linda, Edward, David and Mark and thousands of others like them.

I repeat their names here to remind us who they were, to remind us that the phrase “thousands of others like them” is, of course, an insult.

Because, contrary to Stalin, a million deaths are not a statistic.

A million deaths represent, at the very least, a million tragedies. Think of all the other lives affected by premature death and suicide, the fathers and mothers, sons and daughters, brothers and sisters.

There is a cemetery near my house. I sometimes walk my daughter to school through it.

There is an old gravestone there with the inscription: “To the world you were one of many. To us you were all the world.”

For the people close to Tim, Linda, Edward, David and Mark there were not “thousands of others like them”

They were indeed all the world.

We should remember them too.

Jobcentre Manager: “There Are Now Targets For Bullying Claimants Off ESA”

Many thanks to Benefits And Work for their very useful summary of a very important article.

Earlier this month Benefits and Work reported that there had been a massive and unexplained rise in the numberof ESA sanctions, with the total quadrupling in the course of a year.  The Guardian’s Polly Toynbee, however, has interviewed an anonymous jobcentre manager who claims that they now have targets for bullying claimants off ESA.

Polly met the jobcentre manager, in secret, who told her how the sick are treated and what harsh targets she is under to push them off benefits.

“I just met a jobcentre manager. It had to be in secret, in a Midlands hotel, several train stops away from where she works. She told me how the sick are treated and what harsh targets she is under to push them off benefits. A high proportion on employment and support allowance have mental illnesses or learning difficulties. The department denies there are targets, but she showed me a printed sheet of what are called “spinning plates”, red for missed, green for hit. They just missed their 50.5% target for “off flows”, getting people off ESA. They have been told to “disrupt and upset” them – in other words, bullying. That’s officially described, in Orwellian fashion, as “offering further support”. As all ESA claimants approach the target deadline of 65 weeks on benefits – advisers are told to report them all to the fraud department for maximum pressure. In this manager’s area 16% are “sanctioned” or cut off benefits.

“Of course it’s not written down anywhere, but it’s in the development plans of individual advisers or “work coaches”. Managers repeatedly question them on why more people haven’t been sanctioned. Letters are sent to the vulnerable who don’t legally have to come in, but in such ambiguous wording that they look like an order to attend. Tricks are played: those ending their contributory entitlement to a year on ESA need to fill in a form for income-based ESA. But jobcentres are forbidden to stock those forms. These ill people’s benefits are suddenly stopped without explanation: if they call, they’re told to collect a form from the jobcentre, which doesn’t stock them either. If someone calls to query an appointment they are told they will be sanctioned if they don’t turn up, whatever. She said: “The DWP’s hope is they won’t pursue the claim.”

“Good advisers genuinely try to help the mentally ill left marooned on sickness benefit for years. The manager spoke of a woman with acute agoraphobia who hadn’t left home for 20 years: “With tiny steps, we were getting her out, helping her see how her life could be better – a long process.” But here’s another perversity: if someone passes the 65-week deadline, they are abandoned. All further help is a dead loss to “spinning plates” success rates. That woman was sent back to her life of isolation: she certainly wasn’t referred for CBT. For all this bullying, the work programme finds few jobs for those on ESA.”

Read Polly Toynbee’s full article in the Guardian here

Tuesday, 8 July 2014

My faith has found a resting place

It seems a long time since I last posted a favourite hymn - so here is one of them.

My faith has found a resting place,
From guilt my soul is freed;
I trust the Ever-living One,
His wounds for me shall plead.

I need no other argument,
I need no other plea;
It is enough that Jesus died,
And that He died for me.

Enough for me that Jesus saves,
This ends my fear and doubt;
A sinful soul I come to Him,
He’ll never cast me out.

My heart is leaning on the Word,
The written Word of God,
Salvation by my Saviour’s name,
Salvation through His blood.

My great Physician heals the sick,
The lost He came to save;
For me His precious blood He shed,
For me His life He gave.

Eliza Edmunds Hewitt, 1851-1920

Wednesday, 2 July 2014

NI Assembly Business: Public Petition: ME: Full Adoption of the Canadian Consensus Criteria

It's encouraging to see this happening here in Northern Ireland; I can't imagine the same thing occurring at Westminster!

Northern Ireland Assembly Business: Public Petition: ME:  Full Adoption of the Canadian Consensus Criteria

Session: 2013/2014

Date: Monday, 30 June 2014

Mr Speaker: Mr Bradley has sought leave to present a public petition in accordance with Standing Order 22.  The Member will have up to three minutes to speak on the subject.

Mr D Bradley: Go raibh míle maith agat, a Cheann Comhairle.  Caithfidh mé a rá go bhfuil mé thar a bheith buíoch díot as an deis seo a fháil chun an achainí seo a chur faoi do bhráid agus faoi bhráid an Tionóil.  Thank you very much, Mr Speaker, for the opportunity to present this petition on behalf of Newry and Mourne ME/Fibromyalgia Support Group to you and the Assembly.  As you know, both of those conditions are extremely serious.  They leave the sufferers in great pain and devoid of energy.

For many years, the Newry and Mourne ME group has been working hard to inform people about the illnesses and to provide advice and support to them.  For the most part, the work is carried out by volunteers, who, largely, are patients who suffer from ME and fibromyalgia.  I have great admiration for people who use their own time and resources to help others who suffer from the same illness.  Today's petition asks the Minister of Health to adopt the Canadian consensus criteria on ME and fibromyalgia.

The criteria have been agreed by a plethora of experts in Canada and other countries throughout the world.  The Newry and Mourne support group and many others believe that they offer the best option for sufferers to find relief from the illness and, ultimately, to be cured of it.

As I said, Mr Speaker, I am honoured to present the petition to you on behalf of the group.  It has been signed by hundreds of people.  The group has done amazing work in promoting it.  I am sure that our Health Minister will read the petition and the documentation contained in the file very carefully.  I hope that his response will be a positive one.  On that note, Mr Speaker, it only remains for me to thank you very much.

Mr D Bradley moved forward and laid the petition on the Table.

Mr Speaker: I will forward a copy of the petition to the Minister of Health, Social Services and Public Safety and to the Chair of the Health Committee, Maeve McLaughlin.