LIVE 3 HOUR DEBATE ON ME NOW (1.30 pm) IN PARLIAMENT

Countrygirl

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I think atranscript will be available tomorrow, meanwhile you can re-wind the vieo and watch the whole thing if you missed it.

Sharpe must be drowning his sorrows now his reputation has had a public crucifixion. What an idiot he was to send Carol M. that disgraceful and stupid email! Twitter should be an interesting place to be tonight! Wessley must be seeking divorce proceedings from Michael at this very moment.

Next step is a full HofC debate this autumn, hopefully.

I liked the emphasis on the fact that we can now sue these doctors who push GET. Be very careful Dr Crawley............or is it perhaps too late for you?
 

Alexi

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I think atranscript will be available tomorrow, meanwhile you can re-wind the vieo and watch the whole thing if you missed it.

Sharpe must be drowning his sorrows now his reputation has had a public crucifixion. What an idiot he was to send Carol M. that disgraceful and stupid email! Twitter should be an interesting place to be tonight! Wessley must be seeking divorce proceedings from Michael at this very moment.

Next step is a full HofC debate this autumn, hopefully.

I liked the emphasis on the fact that we can now sue these doctors who push GET. Be very careful Dr Crawley............or is it perhaps too late for you?

Will look forward to reading the transcript so I can digest it bit by bit. Be grateful for the heads up link if you spot it first !
 

Countrygirl

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Carol Monaghan
Interestingly, Professor Sharpe, one of the authors of the PACE trial whom I already mentioned, emailed me this week and told me that my behaviour is “unbecoming of an MP” :wide-eyed:. :whistle: :sluggish:I say to Professor Sharpe that if listening to my constituents, investigating their concerns and taking action as a result is “unbecoming”, I stand guilty. :woot::angel::hug: [Hon. Members: “Hear, hear!”] :thumbsup::cool::lol::trophy::heart: If Members of Parliament are not willing to stand up for the most vulnerable in society, what hope do any of us have? :rocket::heart: :hug:

Gavin Newlands (Paisley and Renfrewshire North) (SNP
I want to say to Professor Sharpe that it is not my hon. Friend’s conduct that is unbecoming; it is his. :p:D:D:lol: Sending such emails does nothing for the reputation of the scientific research community, and he should apologise. :angel::lol::heart::trophy::balloons::balloons::balloons::balloons:



 

Countrygirl

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  • [*]Carol Monaghan
    ME receives practically no biomedical research funding, which I will come back to. Because of the misunderstanding of the condition, the treatments available are often more damaging to the person than no treatment at all.

    Merryn Crofts was just 15 when she experienced hives and swelling in her joints after a family holiday in Majorca. Tests revealed that she had contracted glandular fever.

    Despite dozens of medical appointments, Merryn’s condition deteriorated; she suffered breathing problems, exhaustion and excruciating hypersensitivity to touch, light and sound. She was eventually diagnosed with ME. This once bright young woman was forced to wear an eye mask and suffered from severe migraines, brain fog, slurred speech and persistent infections. Stomach problems and difficulties swallowing meant that her weight plummeted to just 5½ stone. Merryn was eventually fitted with an intravenous nutrition line but was given a terminal diagnosis in 2016. Merryn wrote in her blog:

    “Having severe ME, is like being trapped in your own body every single day. There is no rest, you are bedbound all day every day. It snatches the most simple things away from you like being able to wash yourself, even in bed. Being cared for in every way possible. In terrible pain, from everything. Not being able to talk on the phone or have visitors, and feeling worse about saying no every time someone asks again. Months and months in hospital. Severe infections. Breathing problems. Low immunity. Problems anywhere and everywhere in the body. Paralysis. Severe hypersensitivity. The list is endless, and if I was physically able to type I would carry on. Spread awareness and remember all of us and all of those who have lost their lives.”

    Merryn died on 23 May 2017, just days after her 21st birthday.

    Why is the treatment for people with ME so poor? The lack of understanding shown by some healthcare professionals of a person’s suffering is one of the greatest frustrations to the ME community. Much of that stemmed from the publication of the controversial PACE trial. The treatments investigated in the PACE trial were based on the hypothesis that ME patients harbour “unhelpful” convictions about having a disease and that the continuation of their symptoms is the result of deconditioning.

    The PACE trial compared different treatments, including cognitive behaviour therapy—CBT—and graded exercise therapy, or GET. The results that were published in The Lancet in 2011 seemed to show that GET and CBT could bring about some improvements in a person with ME. Although that may seem positive, if we dig a little deeper we discover that the parameters for recovery were changed midway through the trail and the results depended on self-reporting. Patients have told me that they were pressurised to describe improvements they really did not feel. One participant in the original trial said:


    “After repeatedly being asked how severe...my symptoms were...I started to feel like I had to put a...positive spin on my...answers. I could not be honest about just how bad it was, as that would...tell the doctors I wasn’t trying and I wasn’t being positive enough.”


    Robert Courts (Witney) (Con)
    [*]The hon. Lady is making a powerful speech and is drawing attention to this much misunderstood but very serious condition. My constituents will be grateful to her for that. She made some powerful comments on the PACE trial; will she comment on the way that NICE guidelines have an impact on how the condition is viewed?
 

Countrygirl

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  • [*]For patients, the impact of PACE is severe. The recommendation of GET as a treatment for ME has provoked a backlash from patient groups, who report that many people with ME end up more severely disabled after a course of GET than before. I have spoken to people living with ME who have tried to do GET because they are so desperate to get better and have ended up in a wheelchair or bed-bound as a result of this programme.

    Patrick Grady (Glasgow North) (SNP)
    [*]I congratulate my hon. Friend on securing the debate. The turnout shows the significance of this issue to all our constituents. Her point about GET is important. It seems perverse that people should be forced to take a course of treatment that patently makes their condition worse. Does she agree that that must be reviewed?


    [*]Carol Monaghan
    Indeed. Many people have written to me about their experience of GET, but some of the most upsetting examples are of children who were forced through a programme of GET and ended up with life-changing disabilities as a result.
 

Countrygirl

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The PACE trial, which recommended CBT and GET, influences how health insurers and the DWP make their decisions. Insurance companies refuse to pay out unless a programme of GET has been undertaken, and many people who apply for benefits are told that they must carry out GET—or, indeed, that they appear well enough to work. PACE is unique in UK medical history, in that it was part-funded by the DWP. The links of some of its main authors to health insurance companies are troubling. One of those authors, Professor Michael Sharpe, states in his briefing for the debate:

“Several of the investigators had done small amounts of independent consultancy for insurance companies, but this was not relevant to the trial. The insurance companies played no part in the trial.”

I will leave hon. Members to make up their own minds about that.
 

Countrygirl

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  • [*]That protocol involves two identical tests separated by 24 hours, the collection of gas exchange data and the use of an exercise bike to measure work output accurately. That type of testing reveals a significant performance decrease on day two among people with ME, in terms of their workload and the volume of oxygen they consume before and during exercise. Results from a single test may be interpreted as deconditioning, which may lead to harmful exercise being prescribed. However, the objective measurements of the two-day test remove the issues of self-reporting bias and the question of effort—in other words, the results cannot be faked.

    Those results support the strong and consistent patient evidence of the harm that can occur as a result of inappropriate exercise programmes. However, there are moves afoot to categorise ME as a psychological condition. NHS guidelines on medically unexplained symptoms class ME as such a condition. The Royal College of Psychiatrists states:

    “Medically unexplained symptoms are ‘persistent bodily complaints for which adequate examination does not reveal sufficient explanatory structural or other specified pathology.’”

    Andrew Selous (South West Bedfordshire) (Con)
    [*]I just want to pick up on the hon. Lady’s point about ME being classified as a psychological condition. Does she agree that that is a little curious, given that the World Health Organisation states in its “International Classification of Diseases” that ME is a neurological condition? My understanding is that the United Kingdom is legally obliged to follow that classification.

    Carol Monaghan

    [*]I thank the hon. Gentleman for his intervention. Worryingly, the WHO is looking at reclassifying ME, too—we should all be aware of that—and its current classification of ME as a neurological condition has been ignored in terms of the treatment we have offered to patients here in the UK.


    The Royal College of Psychiatrists goes on to state that symptoms are

    “not due to a physical illness in the body. However, they can be explained, but to do this, we need to think about causes that are not just physical.”

    Under the new “Improving Access to Psychological Therapies” guidance for people with long-term conditions, patients who present with ME are classified as people with medically unexplained symptoms who should undergo CBT therapy, in conjunction with other treatments—in other words, graded exercise therapy. However, as ME is classified as a psychological condition, patients risk getting trapped in the psychological care pathway.

 

Countrygirl

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  • [*]Carol Monaghan
    NICE has said that it will review its guidelines and talk to patient groups and ME charities in doing that. We must continue to urge it to ensure that that is the case, because those best placed to talk about the impact of the current guidelines and what should be in future guidelines are those living with ME.

    Sir Edward Davey (Kingston and Surbiton) (LD)
    [*]Should not graded exercise therapy be removed as a treatment option even before the NICE guidelines are reviewed, given the evidence that people are being harmed by it? The Minister is hearing that evidence today. Is there not a possibility that in future a court could compensate ME sufferers if they continue to be prescribed GET, given that we, the Minister and medical professionals know the evidence?
 

Countrygirl

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  • Sir Edward Davey (Kingston and Surbiton) (LD)
    I congratulate the hon. Member for Glasgow North West (Carol Monaghan) on securing the debate and all hon. Members who will participate in it. It is essential that we speak for the millions missing, and it is great to see so many people in the Public Gallery.

    What I find so shocking is that scientists seem not to want to have the debate. I hope that right hon. and hon. Members across the House find it shocking that the hon. Member for Glasgow North West was written to by a scientist and called out. I have seen scientists writing in journals such as the Journal of Health Psychology calling out the PACE trial, so the idea that the scientists who produced that work have gone unchallenged by other scientists is simply not true. A huge amount of evidence from eminent people in the science community questions the PACE trials, including the methodology, the evidence they used and how they treated their patients, as the hon. Lady said. Therefore, it has been proven not to be the case that the NICE guidelines, built on that questionable evidence, are the only way in which we should consider this disease, and she did that well in a previous debate.


    It is great that the NICE guidelines are to be reviewed, but my concern is that that will take some time. I am sure that is the right process; we must get it right and ensure that the voices of ME sufferers are heard.
 

Countrygirl

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Real harm is being caused by some of the therapies recommended in the guidelines. If that is the evidence from ME sufferers—I am not a scientist, but from what I have read, that experience is widely shared—it is up to the Minister, working with the chief medical officer and others, to question whether the NICE guidelines should be suspended, at least with respect to GET. If GPs, perhaps because they have not been trained, are making medical prescriptions for treatment following NICE guidelines because Ministers and the chief medical officer have not acted, if that treatment is harming people, and if that continues until October 2020 there will, as I said in my intervention, be a case for those who are harmed to go to court and seek compensation.

No one wants that. To avoid it, surely there must be a way in which Government Ministers, working with NICE and the CMO, can issue guidelines directly to GPs and medical professionals to say, “Be careful before you prescribe GET. Ensure that you have read the evidence. Ensure that you have talked properly to the patient.” With many drugs and pharmaceuticals, there are sometimes side effects. Therapy does not work for everybody. Where is the warning in the NICE guidelines of the side effects of GET? That is serious, because people could be seriously hurt in the period between now and the conclusion of the NICE review.

I will move on to research. Looking at the work that Invest in ME Research has done, for example, setting out the calls for research in this country over two decades or more, I find it quite disturbing that those calls have been ignored. Only charities have enabled a meagre amount of research to be done. Some £5 million was set aside for the PACE trial; if we could have a small amount of that money to start real, biomedical research into ME, we would be making a step forward.
 

Countrygirl

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ME is a serious illness, which seriously affects so many in our communities. These people are not lazy and they must not be made to feel like that. To say to an ME sufferer, “Get up and have a walk. You will be fine,” is tantamount to saying to someone with a bullet in his leg, “Stick a plaster on it, ignore the blood flowing down and soldier on.” We must send the message that that does not work and is not helpful. We in this place must ensure that diagnosis and care are appropriate, which is not the current situation, so I fully support the calls of the hon. Member for Glasgow North West.

On behalf of my constituents, and all constituents across the United Kingdom of Great Britain and Northern Ireland, I am asking not simply for words of understanding from the Minister, but for action to be taken to change the “Get up and get on with it” mentality to an “I will help you to get up and get on with it, and find a way to facilitate an easier way of living your life” mentality.

In this debate, we want to highlight ME and show what the problems are. We look to the Minister for action; we need his help to make it happen. We need something practical that can and will help, and that will give encouragement to our constituents and to all ME sufferers across this great nation of the United Kingdom of Great Britain and Northern Ireland.