Today, 24th January 2019 is the Parliamentary Debate on ME

[Roy S]

https://twitter.com/i/web/status/1088472677252321280

 

[Countrygirl]

Here is the link to the transcript of the debate:

https://www.theyworkforyou.com/deba...3_n3K1RhnaRbC3x5PkMEHS0twLU_qvBGnLfkNzTRMUFLg

(Carol Monaghan MP) I shall have to keep going. I apologise, but a great many Members want to speak.

The psychological view of ME led to the controversial and now debunked PACE trial—PACE is “Pacing, graded Activity, and Cognitive behaviour therapy; a randomised Evaluation”. The researchers reported that with cognitive behavioural therapy and graded exercise therapy—in which patients were encouraged to attempt increasing levels of exercise—approximately 60% of patients “improved” and 22% “recovered”. The treatments were labelled safe. Patient groups, however, were saying the opposite. Many who were able to walk when they embarked on a course of graded exercise dropped out of the treatment in wheelchairs or bedbound. Furthermore, patients were pressurised to describe improvements that they did not feel. As the trial progressed and the results did not meet the authors’ expectations, they simply lowered the threshold to define improvement. In some cases, those whose condition had deteriorated were classed as “recovered”. That is simply not good science.

The recommendation of graded exercise has caused untold physical damage to thousands of people. In fact, a 2018 survey found that 89% of ME sufferers experienced worsened symptoms after increasing activity. If graded exercise were a drug, it would have lost its licence.

The blatant ongoing refusal to accept ME as physiological doubtless explains the lack of proper research. Of course it is the Medical Research Council that allocates funds, but the Government can demonstrate their true commitment to improving the lives of ME sufferers. The Scottish Government have committed £90,000 for a PhD scholarship to support research into the causes, diagnosis and treatment of ME, and I would ask that the UK Government follow this lead.

During the debate in June, the Minister for public health, Steve Brine, who is in his place, said that £2.62 million had been spent on ME research since 2011. Let me be very clear: this money was spent on behavioural studies. We need money to be spent on biomedical research, and we are looking for a solid commitment from the Minister.

Until we have developed effective treatments, however, we must ensure suitable care plans are in place to respond to patients’ varying needs. Many US agencies are now removing their recommendations for graded exercise. However the National Institute for Health and Care Excellenceguidelines continue to advocate this, despite patient surveys consistently indicating its harm. The risks are not acknowledged in the guidelines, undermining patients’ ability to give informed consent, and some patients are being threatened with being sectioned if they do not commit to a programme of graded exercise.

C

arol MonaghanShadow SNP Spokesperson (Armed Forces and Veterans), Shadow SNP Spokesperson (Education)
Yes. The statistics are terrible, but I want to describe one such case, which is really quite harrowing. It involves a girl, B, whose name cannot be disclosed. B became ill at the age of eight. A diagnosis of probable ME was made, but it was suggested that the underlying issues were psychological. To show willing, her parents took her to a child psychiatrist, who then involved social services. B’s parents were warned that if they did not fully comply, child protection proceedings would be initiated. Social services specified graded exercise, despite being warned of the dangers. As a result, B deteriorated rapidly until she became wheelchair-bound. Under threat of court action, B’s parents were then forced to take her to a children’s hospital, having been warned that they were “not under arrest just yet.”

B’s parents found what they presumed to be a safer option in an ME unit run by a consultant who appeared to view ME as an organic illness, but this was disastrous. B arrived wheelchair-bound but still able to sit upright and read and write, but under the activity programme, she deteriorated. Her mother was banned from visiting, but other parents in the unit observed B unattended in the wheelchair, in constant pain, unable to sit upright, with her head hanging down the side and crying in distress. This treatment continued for five months. Her parents were threatened that if B did not progress, she would be transferred to a psychiatric unit or placed in foster care. Desperate, they turned to Dr Nigel Speight and the Young ME Sufferers Trust. B was finally allowed home, and her name was eventually removed from the at-risk register. However, by the age of 15, she was bedridden, paralysed, unable to feed or wash herself and utterly dependent on carers. Doctors, psychiatrists and social services all failed her when she was eight. As Dr Offord suggested, this is the case for one in five families living with a child with ME.

A firm diagnosis of ME protects the child from these proceedings, but unfortunately, paediatricians are often reluctant to give this, simply because they do not understand the condition. This leaves the child open to social service intervention. Often, paediatricians phone a so-called expert on ME, who immediately prescribes graded exercise, without even seeing the child in person. I say to the Minister that this is a national disgrace and it needs urgent action. Children who are already blighted by ME must not be subjected to this trauma. I ask him to consider this issue with the utmost seriousness, and to give the House an assurance that parents will not be prosecuted simply for caring for a sick child.

Steve Pound Shadow Minister N.I. 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.

 

[SilverbladeTE]

In the words of Oliver Cromwell to BOTH the Tories AND the psychs:

You have sat too long for any good you have been doing lately...
Depart, I say; and let us have done with you.
In the name of God, go!

 

[prioris]

Resolved,

That this House
calls on the Government to provide increased funding for biomedical research for 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 that they are equipped with clear guidance on the 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.

and support prioris becoming new ruler of the UK to kick butt of any GP ordering graded exercise