#MEdebate Parliamentary debate on Myalgic Encephalomyelitis, January 2019

Today, Thursday 24 January 2019, there has been a historic debate at Westminster main chamber (The Commons) about specifically the need for investment in biomedical research for Myalgic Encephalomyelitis and an end to Graded Exercise Therapy and CBT as ‘treatments’ for ME. MP Carol Monaghan proposed the following motion:

“That this House calls on the Government to provide increased funding for biomedical research into the diagnosis and treatment of ME, supports the suspension of Graded Exercise Therapy and Cognitive Behaviour Therapy as means of treatment, supports updated training of GPs and medical professionals to ensure they are equipped with clear guidance on diagnosis of ME and appropriate management advice to reflect international consensus on best practice, and is concerned about the current trends of subjecting ME families to unjustified child protection procedures”.

Why this motion? 

As a reminder, these treatments are advised on the assumption that M.E. is a psycho-somatic illness (sometimes referred to as somatisation disorder or functional illness): the muscle deconditioning from ‘too much rest’ is ‘cured’ by gradually increasing exercise and CBT is used to persuade you that you have false illness beliefs and you need to ignore any worsening of symptoms and keep increasing the exercise in small increments no matter what.

Unfortunately, the cardinal feature of M.E. is an inability to tolerate overexertion, so, as Kelvin Hopkins, MP put it today,

‘suggesting more exercise seems to me about as sensible as asking frostbite sufferers to walk about in snow.’

The controversial PACE trial claimed to show that Graded Exercise Therapy gives better results of recovery and is safe, but that has now been debunked by multiple world-renowned scientists and used by a Statistics Journal as an example of how not to do research. Meanwhile, recent research has proven clinically that ME patients have an abnormal physiological reaction to exercise and to overexert is dangerous.

This is the message that patient groups have been saying all the time: Graded Exercise Therapy worsens the Myalgic Encephalomyelitis, and in many cases irreparably damages the patient leading to permanent disability or, in rare cases, death. It should be banned, and now. (For more details on the scientific basis for this, please see my earlier post here.)

Do M.E. patients have the right to refuse Graded Exercise Therapy? 

Although adults technically have the right to decline any NHS treatment such as Graded Exercise Therapy, the DWP have been known to withhold benefits if ME patients do so. And if parents decline the treatment for their children then social services are often called in or the child’s diagnosis is quickly changed to ‘Pervasive Refusal Syndrome’, a psychiatric diagnosis which allows psychiatrists to section children and place them in a psychiatric hospital, often forbidding their parents contact.

Below are some highlights of the debate, and the two interviews I did for Christian radio stations TWR and Premier Christianity about why Christians should care about M.E. patients.

My interviews

“It feels like a massive milestone in terms of getting recognition for the severity of the disease. This is the first major debate in the main chamber for a significant time and it really does feel like there’s a swell of support… I truly believe that if we invest in ME as much as it deserves investing in then we will find the answer.” – Tanya Marlow

My full interview with TWR News can be heard here

“Jesus loves justice and so we should love justice…
Children are in absolute pain and are not only are they denied treatment any treatment for it or any cure but they’re then blamed for their own illness – and in extreme cases, social services are called in because they assume that ME cannot be so severe and so they blame the parents..
All Christians should be getting behind this and helping those children and adults who are being denied medical justice and medical equality” – Tanya Marlow

My interview and web story for Premier Christian Radio is here. 

Highlights of the Parliamentary Debate

The most brilliant summary:

Carol Monaghan MP’s opening statement was brilliant – a clear grasp of the issues and a great summary of why this debate was needed. So grateful for her tireless commitment to people with ME and in securing this debate.

Watch the start of Carol Monaghan’s opening statement here. 

The most heartrending story – ‘B’

This is why we need action now – prepare to be stirred. Superb speech from Carol Monaghan.

Watch Carol Monaghan tell the story of ‘B’.

The Testimony of a Mother Whose Daughter Died of M.E. 

If you don’t know of Merryn Crofts, she died at age 21 after suffering horrifically from very severe M.E. The cause of death was officially M.E. Liz McInnes MP tells how her mother witnessed Merryn’s deterioration after undertaking Graded Exercise Therapy – and attributes it directly to her worsening condition and eventual death. This is why we’re here today.

Watch Liz McInnes’ short but powerful contribution here.

The Medical Perspective 

Dr Philippa Whitford MP gave a great speech on the need for better research from a medical viewpoint. She did a great job of explaining why the PACE trial (which claimed Graded Exercise can effectively treat ME) was so poor, and a round-up of the different biomedical research options that seem promising.

‘I think it is quite sinister that some of the funding for that trial [the PACE trial] was from the Department for Work and Pensions; that added to the implication of malingering, despite the fact that 90% of sufferers were working before they were diagnosed…the NICE website still promotes CBT and GET. There should be a red warning, saying, “Don’t follow this. We are looking into it.”’

Watch her speech here. 

The Former Immunologist’s Perspective 

‘When I was a young undergraduate in human bioscience, studying immunology, I heard this [ME] referred to in the labs as “Multiple Excuses”, and that was not so long ago. ‘

He hints at the need for genuine research that isn’t trying to prove a positive answer but is prepared to discover a negative one – perhaps a dig at the PACE trial?

Watch Darren P Jones’ short speech here.

And… the bit where you need your tissues:

But  this – this was the standing ovation moment, and the only time I actually cried. Thank you, Stephen Pound MP for putting heart and passion into saying what our hearts have been longing to hear for decades.

‘I want to say to all those people out there who are suffering from ME; all those people suffering from chronic fatigue syndrome; all those people who have been ignored, belittled and, in many cases, insulted: “This House recognises the reality of your condition. This House will not sit idly by while you suffer. This House will not ignore you. This House will devote its intelligence and resources to research and ultimately resolve and cure this terrible condition, because we respect you, we understand you and we give credit and credibility to what so many people have for far too long denied.” ME sufferers the world over must know that this House and this nation are finally speaking for them.’

Watch the end of Stephen Pound’s speech here

In the debate, the following facts came out: 

• At least 250k (probably more) people in the UK have ME
• 25,000 children in the UK have ME and it’s the leading cause of long-term school sickness absence
• 1 in 5 families with children with ME have been investigated by social services
• The cost of ME to the UK economy is £3.3bn
• Research into ME represents just 0.02% of all grants given to agencies, which was regarded as a pitiful amount
• ME affects more people than the terrible Parkinson’s disease and multiple sclerosis combined.
• 95% of people with ME do not recover (this statistic is from Leonard Jason et al’s study, though others estimate it as 75%, and of course there are those misdiagnosed with ME who recover from something else)
• The UK has not funded any biomedical research since 2012.
• There are no services at all for young people with ME in the entire north-east.

With major thanks to all who contributed to the debate – all the people who wrote to their MPs, all those MPs who came, the charities like ME Association, ME Trust, Action for ME and above all ME Action Network UK who provided an amazing briefing. I’m especially grateful for the behind-the-scenes work of Sarah Reed and others in preparing the superb briefing for parliament and for Jen Brea, whose Unrest film was shown last year to MPs, two of whom cited it as the reason they’d got involved. I am privileged to stand with them.

Over 3000 letters were sent to MPs and more than 40 MPs were there for the debate, which was a good number – in fact, the time limits for speeches had to grow shorter and shorter in order to give everyone their say. This may not seemingly change much immediately (the response of the minister Stephen Brine was disappointing) but it feels like there’s growing pressure on NICE to change their guidelines sooner rather than later. Let’s hope.

You can watch the full 90-minute parliamentary debate here or if you prefer to read there is the full official Hansard transcription here. 

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P.S. I got to the end, put up this post, breathed out, and started sobbing. There’s so much emotion – loss, anger, thankfulness, fear, hope – and it takes its toll. Having chronic illness on days like this means I’m emotionally exhausted too. Thank you to everyone who has supported this debate. Now let’s pray it makes a real difference and turns things around. Maybe this is the tipping point we’ve been waiting for.