Myalgic encephalomyelitis (ME)
Lancashire County Council unanimously supported a Green Party motion for better training and treatment about ME/CFS at its meeting on 23rd May 2024.
This is a summary of the background information provided by Cllr Gina Dowding when presenting the motion.
The aim of this motion is to encourage greater understanding of and improve the treatment and health outcomes of those affected by Myalgic Encephalomyelitis / Chronic Fatigue Syndrome and Long Covid in Lancashire. This condition is referred to as ME / CFS.
The ME Association estimates than more than 1.25 million people in the UK live with a diagnosis of ME / CFS and now Long Covid.*
The lack of research and treatment into this chronic illness is a national scandal.
Although still not well enough understood, ME / CFS is understood to be a post viral illness – affecting people after they have had a nasty virus or parasitic conditions.
People with ME / CFS become exhausted, experience pain and brain fog after minor exertion from routine activities.
It is a debilitating, long-term neurological condition with varying degrees of severity.
People struggle to get a diagnosis.
Because doctors and medics are poorly trained in this field, and because the diagnostic criteria to confirm ME / CFS is complex, there is a high likelihood that people who are suffering from it are wrongly assumed to be suffering from psychosomatic illness.
There are no effective drug treatments, so people are too often left to self-manage and search for their own solutions. Any treatment which is available focuses only on improving functional ability.
ME/CFS prevents people from functioning normally, stops or restricts ability to work or go to school, and leads to a lower quality of life.
Inevitably people with ME/CFS frequently suffer from severe isolation. This has both an emotional impact, and a practical impact – social networks reduce over time, there are fewer and fewer people to ask help with simple things like posting a letter or buying food.
A lack of understanding of the wide range of symptoms and the impact of the illness – by friends, family, medics, employers, colleagues, is hugely distressing and leads to people feeling let down, and disconnected from people around them.
This is why campaign groups organise awareness raising days called ‘Millions Missing’ (See https://millionsmissing.meaction.net/mm24/). We simply let those suffering from ME/CFS disappear from society.
Around 25% of people with ME/CFS are severely or very severely affected with some patients needing hospital care. Vulnerable patients and their families have received appalling treatment by the NHS -the lack of understanding about their condition is traumatising and can actually lead to further harm.
ME Action, the international campaign organisation, is calling for greater education in hospital systems and medical schools about ME / CFS, and for major hospitals to treat ME.
There is no doubt that we have a growing number of people in Lancashire with life changing symptoms living with this horrible illness.
As a result Lancashire County Council agreed to the following
asks the Health and Adult Services Scrutiny Committee to:
(i) Request information from the Lancashire and South Cumbria Integrated Care Board on numbers of people with ME/CFS and Long Covid and the treatment options available across Lancashire.
(ii) Investigate what ME/CFS and Long Covid training is given to existing and future staff on the updated NICE guidelines.
(iii) Consider how to approach the Secretary of State for Health and NHS England requesting further investment in research and training about ME/CFS and Long Covid.
*The exact number of people suffering from ME/ CFS and Long Covid is not known due to limited epidemiological research. See post on the ME Association website on 13 May for more information on the difficulties in collecting data.
Long Covid is not the same as ME. But there is an overlap. Many Long Covid patients meet the diagnostic criteria for ME of severe functional impairment. However others do not. There are also many additional symptoms with Long Covid, which can affect any organ and system of the body. Recent ONS figures show 3.3% of the population report symptoms continuing or emerging at least 4 weeks after a Covid infection. This is 2 million people affected in England and Wales alone. 74.7% of these report it adversely affects their day-to-day activities.
NOTE ON THE MEETING:
Although the focus of the motion was primarily about changes within the health service, Gina also added these points in summing up:
There are also implications for the county council itself. We are responsible for social care and special educational needs services. It goes without saying that our staff should also have greater knowledge and understanding of this condition, especially when involved those who are more severely ill: people with severe ME frequently have sensitivities to sound and light. Where good specialist medical services are available, they can advise social care staff – but they are frequently lacking.
Those who are trying to help need to understand that there are limits to what someone with ME/ CFS can accomplish in one day – and they may not be able to repeat that task for days or weeks due to post exertional malaise. These issues are crucial to making a good assessment or developing an appropriate care package.
The authorities always seem to express surprise that a young person may miss school on account of ME. However some years ago, well respected researchers published a paper showing that it was the largest cause of cumulative school loss in the UK. (See Consultant Microbiologist, Betty Dowsett and Jane Colby, Former Headteacher: Long Term Sickness Absence due to ME/CFS in UK schools. See https://www.tymestrust.org/pdfs/dowsettcolby.pdf )
We cannot let this state of ignorance continue. We in Lancashire must join those campaigning to help raise awareness of the desperate need for more research, better training and greater understanding of this terrible disease which is affecting so many of our residents.
The full text passed unanimously by Lancashire County Council at its meeting on 24th May is below. The original text submitted by Green Cllr Gina Dowding (Lancaster) and seconded by Green Cllr Scott Cunliffe (Burnley) was amended slightly by the Conservative Group.
The ME Association estimates that more than 1.25 million people in the UK live with a diagnosis of Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and Long Covid. ME/CFS is a debilitating, long-term neurological condition with varying degrees of severity.
People with ME/CFS experience delayed worsening of symptoms after minor activity. It prevents people from functioning normally, stops or restricts ability to work or go to school, and leads to a lower quality of life.
The ME Association believes there are no effective drug treatments available. Treatments focus on improving functional ability and self-management.ME Action, the international campaign organisation, calls for greater education in hospital systems and medical schools about ME/CFS, and for major hospitals to treat ME.
Lancashire County Council resolves:
To encourage greater understanding and improve the health outcomes of those affected by ME/CFS and Long Covid in Lancashire and asks the Health and Adult Services Scrutiny Committee to:
(iv) Request information from the Lancashire and South Cumbria Integrated Care Board on numbers of people with ME/CFS and Long Covid and the treatment options available across Lancashire.
(v) Investigate what ME/CFS and Long Covid training is given to existing and future staff on the updated NICE guidelines.
(vi) Consider how to approach the Secretary of State for Health and NHS England requesting further investment in research and training about ME/CFS and Long Covid.
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