tinacarroll27
Senior Member
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- 254
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- UK
I just got an email from my MP after I sent her a letter about the discussion in parliament about ME. I am not sure she actually went but at least she replied back to me and she does seem to recognise the issues with the PACE TRIAL. It is good that we are getting more MPs aware of the situation with ME in the UK. Here is her response.
Dear Christina,
Thank you for contacting me about treatment and support for people living with Myalgic Encephalomyelitis (ME).
I sympathise profoundly with anyone affected by ME. It is a highly complex condition and I believe it is vital that patients receive the best treatment and care that takes account of their particular needs. Despite so many people being affected by ME, it is little understood in the medical world, leaving patients feeling dismissed, neglected and stigmatised further by their condition. I believe that local and national Government, as well as public services, need to take this into account and improve our knowledge and treatment of the condition.
ME currently receives far less research funding than other neurological conditions of similar prevalence and it is therefore unsurprising that it is so little understood in the medical world. I am aware that the charity, Invest in ME, recently opened a centre of excellence at Norwich Research Park with the objective of maintaining high-quality biomedical research into ME and raising awareness of the effects of the condition on patients and families.
The National Institute for Health and Care Excellence (NICE) is responsible for establishing guidelines on diagnosis and management of ME. It sets out timeline markers for making an early and accurate diagnosis for children and adults. However, standard medical tests often find nothing wrong, which initially leads many doctors to dismiss ME as psychological. Patients with ME feel that they have been let down time and time again as research, such as the PACE Trial, have been found to be seriously flawed.
NICE has recognised concerns that existing guidance is outdated and that patients are not receiving the full picture on recommended treatments, such as studies that have shown inefficacy of cognitive behavioural therapy (CBT) or harms of graded exercise therapy (GET). In September 2017, NICE confirmed that it is planning a full update to its guidelines, including a review into the PACE trial and any implications for its current recommendations.
I will follow NICE's review closely and bear in mind the points you have raised. In the meantime, I believe the Government should consider funding research into ME to better our understanding of the condition, improve perceptions of ME and expand routes to diagnosis, care and treatment.
Yours sincerely,
Rachel Reeves
Member of Parliament for Leeds West
Dear Christina,
Thank you for contacting me about treatment and support for people living with Myalgic Encephalomyelitis (ME).
I sympathise profoundly with anyone affected by ME. It is a highly complex condition and I believe it is vital that patients receive the best treatment and care that takes account of their particular needs. Despite so many people being affected by ME, it is little understood in the medical world, leaving patients feeling dismissed, neglected and stigmatised further by their condition. I believe that local and national Government, as well as public services, need to take this into account and improve our knowledge and treatment of the condition.
ME currently receives far less research funding than other neurological conditions of similar prevalence and it is therefore unsurprising that it is so little understood in the medical world. I am aware that the charity, Invest in ME, recently opened a centre of excellence at Norwich Research Park with the objective of maintaining high-quality biomedical research into ME and raising awareness of the effects of the condition on patients and families.
The National Institute for Health and Care Excellence (NICE) is responsible for establishing guidelines on diagnosis and management of ME. It sets out timeline markers for making an early and accurate diagnosis for children and adults. However, standard medical tests often find nothing wrong, which initially leads many doctors to dismiss ME as psychological. Patients with ME feel that they have been let down time and time again as research, such as the PACE Trial, have been found to be seriously flawed.
NICE has recognised concerns that existing guidance is outdated and that patients are not receiving the full picture on recommended treatments, such as studies that have shown inefficacy of cognitive behavioural therapy (CBT) or harms of graded exercise therapy (GET). In September 2017, NICE confirmed that it is planning a full update to its guidelines, including a review into the PACE trial and any implications for its current recommendations.
I will follow NICE's review closely and bear in mind the points you have raised. In the meantime, I believe the Government should consider funding research into ME to better our understanding of the condition, improve perceptions of ME and expand routes to diagnosis, care and treatment.
Yours sincerely,
Rachel Reeves
Member of Parliament for Leeds West
