Found: responses can lead to heat illness, including heat cramps (muscle cramps and spasms) and heat exhaustion (fatigue
May. 21 2024
Source Page: Our plan to improve the lives of people with ME/CFS (easy read)Found: fatigue syndrome (ME/CFS) Easy Read We say myalgic encephalomyelitis like this: “my - al - jick
May. 21 2024
Source Page: Our plan to improve the lives of people with ME/CFS (easy read)Found: fatigue syndrome (ME/CFS) What do you think?
Mentions:
1: Alec Shelbrooke (Con - Elmet and Rothwell) It can be a very isolating experience for women or anyone living with a chronic illness.As well as friendships - Speech Link
2: Alec Shelbrooke (Con - Elmet and Rothwell) When I hit 30 I started to have mid cycle pains and neurological symptoms and extreme fatigue, in which - Speech Link
3: Alec Shelbrooke (Con - Elmet and Rothwell) That is why it is vital to move this issue forward quickly.I did some research, which I am sure the Minister - Speech Link
4: Catherine McKinnell (Lab - Newcastle upon Tyne North) Endometriosis can also cause chronic bowel and bladder-related symptoms. - Speech Link
5: Catherine McKinnell (Lab - Newcastle upon Tyne North) expert-led curriculum and assessment review, which will learn from international best practice and research - Speech Link
Asked by: Fabian Hamilton (Labour - Leeds North East)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, if she will make an assessment of the adequacy of NHS provision of specialist ME or chronic fatigue syndrome services; and if she will take steps to increase the number of clinicians who specialise in ME or chronic fatigue syndrome.
Answered by Andrew Stephenson - Minister of State (Department of Health and Social Care)
The Department, through the National Institute for Health and Care Research (NIHR), provides funding for research projects which aim to understand the underlying causes of myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), and find new treatments for the condition. As part of this, the NIHR and the Medical Research Council have funded the world’s largest genome-wide association study of ME/CFS. This £3.2 million study, termed DecodeME, will analyse samples from 25,000 people with ME/CFS to search for genetic differences that may indicate underlying causes, or an increased risk of developing the condition. By helping us to understand ME/CFS better, this research has the potential to lead to new treatments for the condition.
Integrated care boards (ICBs) are responsible for commissioning specialist ME/CFS services that meet the needs of their population, subject to local prioritisation and funding. The process of commissioning services should take into account best practice guidance, such as the National Institute for Health and Care Excellence’s guidance on ME/CFS diagnosis and management, published in October 2021. In addition, in October 2023, the British Association of Clinicians in ME/CFS published the ME/CFS National Services Survey. This report provides insight into the services being delivered for adults, children, and young people with ME/CFS.
Asked by: Fabian Hamilton (Labour - Leeds North East)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, whether her Department (a) has and (b) plans to provide funding for new treatments for ME or chronic fatigue syndrome.
Answered by Andrew Stephenson - Minister of State (Department of Health and Social Care)
The Department, through the National Institute for Health and Care Research (NIHR), provides funding for research projects which aim to understand the underlying causes of myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), and find new treatments for the condition. As part of this, the NIHR and the Medical Research Council have funded the world’s largest genome-wide association study of ME/CFS. This £3.2 million study, termed DecodeME, will analyse samples from 25,000 people with ME/CFS to search for genetic differences that may indicate underlying causes, or an increased risk of developing the condition. By helping us to understand ME/CFS better, this research has the potential to lead to new treatments for the condition.
Integrated care boards (ICBs) are responsible for commissioning specialist ME/CFS services that meet the needs of their population, subject to local prioritisation and funding. The process of commissioning services should take into account best practice guidance, such as the National Institute for Health and Care Excellence’s guidance on ME/CFS diagnosis and management, published in October 2021. In addition, in October 2023, the British Association of Clinicians in ME/CFS published the ME/CFS National Services Survey. This report provides insight into the services being delivered for adults, children, and young people with ME/CFS.
Asked by: Daisy Cooper (Liberal Democrat - St Albans)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what progress her Department has made on the Interim Delivery Plan for ME/CFS.
Answered by Andrew Stephenson - Minister of State (Department of Health and Social Care)
In August 2023, the Department published My Full Reality, a cross-Government interim delivery plan on myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), which sets out a number of actions to improve the experiences and outcomes for people with the condition through an expansion of research, better education of professionals, improvements in attitudes towards the condition, and improvements to service provision.
Alongside the publication of the interim Delivery Plan, we ran a public consultation to gather the views and experiences of healthcare professionals, organisations, and individuals with lived experiences of ME/CFS. The aim of the consultation is to build a picture of how well the interim delivery plan identifies and meets the needs of the ME/CFS community, and to understand where there are any gaps where further action may be necessary.
The consultation received well over 3,000 highly detailed responses, which are in the process of being analysed. The consideration and analysis of these responses is progressing steadily, and we are on track to publish a summary of the consultation responses shortly. The consultation responses, along with continued close engagement with stakeholders, will inform the development of the final delivery plan, which we aim to publish later this year.
Oral Evidence May. 15 2024
Inquiry: Disability employmentFound: Mental Health Policy Institute, Crohn's and Colitis UK, MS Society, ME Association, Autistica, Down’s Syndrome
Asked by: Owen Thompson (Scottish National Party - Midlothian)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps her Department is taking to ensure myalgic encephalomyelitis receives a proportionate share of National Institute for Health and Care Research funding.
Answered by Andrew Stephenson - Minister of State (Department of Health and Social Care)
The Department funds research on health and social care through the National Institute for Health and Care Research (NIHR). The NIHR welcomes funding applications for research into any aspect of human health including myalgic encephalomyelitis. These applications are subject to peer review and judged in open competition, with awards being made based on the importance of the topic to patients and health and care services, value for money and scientific quality. In all areas, the amount of NIHR funding depends on the volume and quality of scientific activity.
Asked by: Owen Thompson (Scottish National Party - Midlothian)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, if she will instruct the National Institute for Health and Care Research to increase the level of funding available for myalgic encephalomyelitis research.
Answered by Andrew Stephenson - Minister of State (Department of Health and Social Care)
The Department funds research on health and social care through the National Institute for Health and Care Research (NIHR). The NIHR welcomes funding applications for research into any aspect of human health including myalgic encephalomyelitis. These applications are subject to peer review and judged in open competition, with awards being made based on the importance of the topic to patients and health and care services, value for money and scientific quality. In all areas, the amount of NIHR funding depends on the volume and quality of scientific activity.