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https://www.thetimes.co.uk/article/...BKfKgl7uxoS14Iqdsv-KV9qQpQoZ1TLl00v1UjKXAaJbg
SAJID JAVID
Sajid Javid
Thursday May 09 2024, 9.00pm, The Times
A once active, happy person, full of life, is now bedridden, too exhausted to eat and barely able to speak. What happens when you have a disease doctors can’t diagnose? Many with myalgic encephalomyelitis (ME) have faced this question for decades.
Since the NHS was founded 76 years ago, huge advances have been made in combating disease and illness. But those living with ME have been left behind. Little understood and often misdiagnosed, this complex condition causes debilitating symptoms including prolonged fatigue, dizziness, muscle pain and brain fog. For some, it can begin after a battle with illness. For others, the start can seem unexplainable.
For decades, patients have been routinely dismissed. Families were told that their loved ones suffered from a psychological condition or “yuppie flu”. I already knew about this condition before I was appointed health secretary, due to the painful experience of a family member. Then, as we battled the pandemic, the emergence of long Covid brought renewed public attention because of the similar symptoms. That is why I announced two years ago a radical new approach to combating this condition. It would focus on diagnosis, research and care, and produce the first cross-government strategy on ME. Two years later, it remains unpublished.
This Sunday, World ME Day, is an opportunity to refocus minds on how much more needs to be done. The first objective must be to increase understanding and awareness, including in the medical profession. Too often, patients with ME are misdiagnosed and in some cases they are dismissed by clinicians. Even getting basic information right can be difficult. New efforts are needed to establish proper data records and increase awareness across areas of government with which patients come into contact.
Second, more support is required to increase research into treatments and cures. Existing funding is welcome, but a step change is sorely needed. As a scientific superpower, the UK should lead efforts to collaborate with international partners to further research in this area. Third, to ensure better care for patients, every NHS trust needs to implement the latest ME support guidelines. Troubling reports suggest that only one in four trusts are complying. Ministers must investigate this and urgently address what is going wrong.
Every patient and family needs something that has been absent for too long: hope for the future. By raising awareness this weekend, we can all help increase support, but it must be for ministers to take decisive action.
Sir Sajid Javid MP was secretary of state for health and social care, 2021-22
SAJID JAVID
People with ME have been ignored for far too long
Sajid Javid
Thursday May 09 2024, 9.00pm, The Times
A once active, happy person, full of life, is now bedridden, too exhausted to eat and barely able to speak. What happens when you have a disease doctors can’t diagnose? Many with myalgic encephalomyelitis (ME) have faced this question for decades.
Since the NHS was founded 76 years ago, huge advances have been made in combating disease and illness. But those living with ME have been left behind. Little understood and often misdiagnosed, this complex condition causes debilitating symptoms including prolonged fatigue, dizziness, muscle pain and brain fog. For some, it can begin after a battle with illness. For others, the start can seem unexplainable.
For decades, patients have been routinely dismissed. Families were told that their loved ones suffered from a psychological condition or “yuppie flu”. I already knew about this condition before I was appointed health secretary, due to the painful experience of a family member. Then, as we battled the pandemic, the emergence of long Covid brought renewed public attention because of the similar symptoms. That is why I announced two years ago a radical new approach to combating this condition. It would focus on diagnosis, research and care, and produce the first cross-government strategy on ME. Two years later, it remains unpublished.
This Sunday, World ME Day, is an opportunity to refocus minds on how much more needs to be done. The first objective must be to increase understanding and awareness, including in the medical profession. Too often, patients with ME are misdiagnosed and in some cases they are dismissed by clinicians. Even getting basic information right can be difficult. New efforts are needed to establish proper data records and increase awareness across areas of government with which patients come into contact.
Second, more support is required to increase research into treatments and cures. Existing funding is welcome, but a step change is sorely needed. As a scientific superpower, the UK should lead efforts to collaborate with international partners to further research in this area. Third, to ensure better care for patients, every NHS trust needs to implement the latest ME support guidelines. Troubling reports suggest that only one in four trusts are complying. Ministers must investigate this and urgently address what is going wrong.
Every patient and family needs something that has been absent for too long: hope for the future. By raising awareness this weekend, we can all help increase support, but it must be for ministers to take decisive action.
Sir Sajid Javid MP was secretary of state for health and social care, 2021-22