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

Countrygirl

Senior Member
Messages
5,431
Location
UK
  • 2.39 pm
  • Kerry McCarthy (Bristol East) (Lab)
    Thank you, Mr Rosindell, for calling me to speak.

    I am here to speak today partly because constituents have been in touch to ask me to do so, but also because I have a very good friend who has been affected by myalgic encephalomyelitis, or ME, since about the age of 15 and she is in her early forties now. When I say “affected by” ME, that means that she did not go on to college and she has never held a job. She is not at the worst end of the spectrum of severity, but I think I can probably best describe her condition as just almost constantly feeling rough. So, it is like either having flu or migraines, or aches and pains.

    I am aware of my friend’s condition. Obviously, it is one thing to read up on the condition or to hear accounts from constituents who come to see me, and I have had constituents with ME and fibromyalgia, which is a similar condition, come and talk to me. However, when someone has a very close friend with ME, they know that every time they try to make a social engagement with them, it will always be, “Well, Lucy will come if she’s up to it that day.” My friends and I are all planning to watch the football together on Sunday. However, we will not know until Sunday morning whether Lucy is well enough to attend, and half the time that she does come along to events, it is possible to tell that she is struggling with a migraine or flu, but she just desperately wants to see her friends. That really brings home just how debilitating a condition ME is.

    As the hon. Member for Cheltenham (Alex Chalk) said, there is a cumulative effect with ME. People make such a big deal of having a cold, or just feeling a bit under the weather, or feeling hungover. Lucy feels like that most of the time and obviously there are other people with ME who are completely bedridden or who cannot bear bright lights. I had a member of staff whose younger brother came to her wedding in a wheelchair, because he had ME. So it affects people in many ways.

    However, in some ways the cruellest impact of ME is the fact that sufferers are not believed and that it is a hidden illness, so to speak. The ME campaign group, Millions Missing, recently held an event in Bristol, where friends and relatives of those with ME laid out pairs of shoes to represent some of those who are suffering from the illness, which effectively renders them invisible, and they also read out stories of the battles that their friends and family members had gone through, as well as expressing their determination to see real change happen.



  • The organisation Action for ME used to be based in the centre of Bristol but is now based just outside. What really hits home is its raison d’être, as set out on its website, which says the organisation exists



    “to take action to end the ignorance, injustice and neglect faced by people”



    who have ME. Most other campaign groups for medical conditions do not have to start from there; their starting point might be to raise awareness of the symptoms of a particular conditions, or to make calls for treatment. To have to start from the point of view of emphasising the injustice and neglect, because so many people deny that ME exists, just shows how much of a battle we have on our hands.



    It was an excellent speech by the hon. Member for Glasgow North West. As she said, ME affects around 250,000 people in the UK. I will just cite one of my constituents, who contacted me to stress the lack of support and understanding that had been experienced when dealing with medical professionals; there are many people with ME for whom it takes a long, long time to get a diagnosis, because of that lack of support and understanding.



    My constituent got in touch to share the story of her close friend’s 28-year-old son, who has had ME for last couple of years. She said that the impact on his life has been catastrophic. He was a highly skilled and highly valued journalist for a national newspaper, with a busy and vibrant professional and social life. Since contracting ME, he has been unable to work and is now living at home with his parents, who act as his carers. He has severely limited energy, he is in constant pain and he has obtained no relief or satisfaction from the treatments currently available through the NHS, his GP and the specialists to whom he has been referred. His parents have been left to research and self-fund investigations and treatment themselves, which is plainly not good enough.
    In Bristol, we have a chronic fatigue syndrome/ME centre, but it has no doctors and
    focuses primarily on training in activity management. One of my constituents who received treatment there was highly complimentary about the staff, but she echoes the view of many other patients that occupational therapy is an inadequate approach for people with a highly disabling, multi-systemic disease.

    The current National Institute for Health and Care Excellence guideline recommends treatment consisting of graded exercise therapy and cognitive behavioural therapy, but it has been criticised by all ME charities, patient organisations and representatives registered with NICE as stakeholders. We have already heard from a few people today about that.

  • Michelle Donelan
    On that point, one of my constituents is a 15-year-old who finds the graded exercises very debilitating; actually, they make her condition worse, which has been echoed by ME charities and the ME community. Does the hon. Member agree that we need to look at graded exercise again in the new NICE guidelines?

  • Kerry McCarthy
    Yes. So much concern has been expressed about graded exercise therapy and many patients prefer the concept of pacing, which is balancing activity and rest to help them to manage their ME and work towards recovery. However, that approach is not currently recommended by NICE. I very much hope that the Minister picks this issue up, because it is probably the most controversial issue around the treatment of ME at the moment. I welcome NICE’s decision to review its guidelines—the new guidelines are expected in October 2020, I think—and I urge NICE to listen to the voices of patients with ME.

    We have heard from other speakers about biomedical research and the decades of underinvestment in that research. We have also heard that the average research spend per person living with ME is less than £1 a year and that much of that money is provided by charities rather than Government. We can also consider the economic cost of not helping people at least to find a way to manage a condition such as ME; ideally, we would find the cause of ME and a cure for it. Clearly, that economic cost is unacceptable.
 

Countrygirl

Senior Member
Messages
5,431
Location
UK
Patients with ME feel that they have been let down time and again as research such as the PACE trial—which, sensibly, we heard about—have been found to be seriously flawed. In fact, Jonathan Edwards, emeritus professor of medicine, said that the PACE trial would be a great example

“in an undergraduate textbook as an object lesson in how not to design a trial”.

In addition, a petition signed by more than 12,000 individuals—mostly patients, but also more than 90 scientists and clinicians—and more than 50 patient groups worldwide have demanded a retraction of the results of that trial. Does the Minister agree that ME patients deserve a trial that they can trust not to dismiss their condition or recommend treatments that could make it worse? Do the Government have any plans to fund a proactive and co-ordinated piece of research on ME that patients can trust?

Given the lack of medical research into ME, healthcare professionals are, unsurprisingly, not sufficiently trained in diagnosing the condition, as hon. Members have told us today. According to several ME charities, coverage of ME in many medical textbooks remains inadequate and can be misleading or even non-existent. The chief medical officer’s report and the NICE guidelines on ME set out clear timeline markers for making an early and accurate diagnosis. Both recommend that adults should normally have had the diagnosis confirmed within four months of onset of symptoms, or within three months for children and young people. However, standard medical tests often find nothing wrong, which leads many doctors initially to dismiss ME as psychological.
 

Countrygirl

Senior Member
Messages
5,431
Location
UK
I was also a bit disappointed. The Minister, who is a compassionate person, talked about funding, and I think he said that the Medical Research Council is putting £2.6 million into ME research. Unfortunately, that is not for biomedical research—or little of it is. I quickly googled and found that a new research programme is taking place at Bath University, but, once again, it is at the department of psychology. That is where we have the trouble: it is not a psychology department that needs to be doing research, but a medicine or biomedical sciences department.

Members have spoken passionately on the ME community’s behalf, and once again I thank everyone here this afternoon. I do not see this as the end. The fight for people with ME both here and across the world continues.
 

Mary

Moderator Resource
Messages
17,335
Location
Southern California
Thanks so much @Countrygirl for bringing this to our attention! And it was great to see GET get hammered over and over, with implications of lawsuits for harm that it causes. I'm going to bring this to the attention of the Mayo Clinic. They ignored the CDC's actions last year in dropping GET, but maybe they will pay attention to the threat of lawsuits! :sluggish:
 

alkt

Senior Member
Messages
339
Location
uk
now I wish I had not spent 3 hrs watching this if I only knew that country girl was going to take the time and effort to post it here . thanks . I have seen other debates witch seem to go as well as this but then seen no real world outcomes . I am hopeful that the honourable m p miss carol monaghan has the stamina to take this to a full house of commons debate and the government has a full and proper inquiry into pacegate .