On May 1st at 4.30 pm, Sir Sajid Javid is to lead a debate on research into ME in Westminster Hall, Houses of Parliament, Lpndon.
Steve Topple has written the open letter (below) to Sir Sajid Javid for us all to sign. (This can be signed by anyone from all countries)
Please consider adding your name and don't forget to acknowledge the email or your name won't register.
Thank you!
https://openletter.earth/sajid-javi...ases-in-your-westminster-hall-debate-a0d1b905
26 April 2024
Sajid Javid: please raise very severe and severe ME cases in your Westminster Hall debate
Dear Sajid,
We welcome you leading a Westminster Hall debate on myalgic encephalomyelitis (ME) on Wednesday 1 May, and also thank you for your work on this devastating illness during your time as secretary of state for health and social care.
As a community, we are collectively extremely distressed by the situation of several ME patients in NHS hospitals.
Millie, Carla, and Karen - while being individual cases - are all currently being neglected, mistreated, and in some instances abused by medical professionals supposedly charged with their care.
Millie has been placed under Deprivation of Liberty Safeguarding (DoLS) measures - with medical professionals not believing her ME diagnosis.
Carla is in a similar situation - with the hospital's treatment leading to her having seizures for over two weeks, left untreated.
Karen has been plagued by the NHS refusing to treat her ME seriously - now forced into hospital which will make her even worse.
The common denominators in these women's cases is medical professionals refusing to believe their ME diagnoses or not following NICE guidelines, and then in all cases consequently worsening their health - to the point where they are at severe risk of potentially dying. This is thanks to decades of psychologisation of ME by a small but influential and vocal group of medical professionals - which has ended up toxifying how far too many people with ME are treated by the state and society.
Yet despite these three women having ME diagnoses, they and their families have been at best failed, and at worst subject to severe malpractice by the NHS.
Tragically, it is highly likely that Millie, Carla, and Karen's cases are just the tip of the iceberg. They only came to light because of social media, their families reaching our for help, and the hard work of chronic illness communities; people who are already sick themselves.
Plus, the way the NHS has treated these cases then makes other people living with ME feel unsafe in our public health service.
Moreover, people living with ME are dying. In January, one woman from the UK went to Dignitas to end her own life. In March, another woman living with ME died. Currently, an inquest into the death of Maeve Boothby-O'Neill is ongoing.
We feel that ME is not getting the priority focus from any area of government that it so desperately needs. We urge you to raise Millie, Carla, and Karen's cases during the Westminster Hall debate, along with how they have been treated - and reflect the lived reality of how ME patients feel about the NHS.
Yours gratefully,
The ME community, the Chronic Collaboration, and their allies.
