The following report was read out at petition handover to the welsh assembly by MESiG 16th September 2014
Who We Are
MESIG( ME Support In Glamorgan). A support group for people with M.E. We have been established since 1988. Each member of the committee have been personally affected by M.E. in one way or another. We are not many but we represent many. A voice for the voiceless. We represent those who are unable to physically be here, those who are bedbound/ housebound. Those who are struggling to tackle each day, those who are in such pain, with no relief. Those who have been let down by the system.
Only yesterday I spoke to a lady from away for the first time. She had been suffering with M.E for many years but hadn’t told anyone. Said I was the first. Why? You may ask yourself. I met another lady who battled M.E for 10 years, was healed and didn’t tell anyone she was healed. When I asked her why, she said no one believed she was sick in the first place. I, myself battled M.E for 23 years, it took 5 years to get a diagnosis. That’s 5 years of ceasing to function normally on every level until the point of collapse and complete shutdown. I went from a successful business woman, independent from the age of 10, to someone who needed help to get to a toilet. This has an impact on oneself but more so is NOT BEING BELIEVED. Feeling ashamed to be ill because of the stigma attached to the label M.E. to the point where people pretend not to have it. I would know straight away which doctor, medical person was M.E friendly or not before they even spoke. That’s what 23 years experience gives you. We don’t say this to point fingers or blame, we love doctors and thank God for them. But it does highlight a need. A need for education. A need for research. A need for services. A need for change.
Quotes from members unable to attend
1.My thoughts are that we need more support – professionally and medically. For me I feel there is not enough being done and I am being left to cope on my own. I feel that when I go to the Doctors, they send me for bloods or up my meds or tell me there is nothing they can do.
- There needs to be some provision for us.
- There needs to be an acknowledgement of this syndrome.
- There needs to be an awareness.
- More needs to be done.
2.We’re Fed-Up of people in power Shutting-their-eyes & ears & PRETENDING we’re Alright – WHEN WERE NOT !!!!
3.Wish I could come but sorry just can’t. I’ve been flattened by this illness for 15 years….the first 7 spent entirely in my bedroom….recent years I’ve been a lot better but unable to get out much..and never on my own. Probably now up to 35%-40% of how I was 15 years ago, then I was a busy working mum of two, productive, and felt a valued member of society….now though..only valued by my family and friends.
There are many similarities to MS ….plus we have the complete exhaustion that is undescribable…and yet ME is so underfunded in comparison. We need specialists…we need a clinic….We need help.
We have been here before
In 2006 a previous petition was launched. A 7,000-signature petition handed to the then Welsh health minister Dr Brian Gibbons in 2006 – was started by the late Christine Llewellyn, shortly after she stepped down as MEA chairman. Christine died heart problem 2007 unexpected. Her daughter had ME.
Nearly a decade later we are still here asking for help!! Nothing has changed.
MESIG (ME Support In Glamorgan), know that early diagnosis delays harm. We have been running since 1988, that’s a lot of people and experiences we have come across. We have seen people come on board very unwell but in early stages, they take advice and some recover, some only enough to work part time but have better quality of life. Symptoms not so severe etc. The point is that the lack of services for people and the delay in diagnosis costs the government in the long run. With benefits, tests, long term illness, care etc. We are not saying all sufferers can be cured but all would benefit from appropriate care and especially from being believed. A clinic would save the Government money.
There is a clinic in Kent called Burrswood. They have a team who understand M.E and have had some success with bedbound patients. It is critical to have this understanding as pushing sufferers beyond their capacity can cause death.
What is M.E?
Myalgic Encephalomyelitis (M.E.) is a chronic, fluctuating illness affecting an estimated 250,000 people in the UK. It may be diagnosed as Chronic Fatigue Syndrome (CFS) or Post Viral Fatigue Syndrome (PVFS). For continuity and clarity we refer to the condition throughout this report as M.E./CFS.
The World Health Organisation classifies M.E / C.F.S as a neurological condition. The National Institute for Health and Clinical Excellence (NICE) emphasises that this is a real illness and that the physical symptoms can be as disabling as multiple sclerosis, systemic lupus erythematosus, rheumatoid arthritis and other chronic conditions.
M.E./CFS involves a complex range of symptoms which includes fatigue, malaise, headaches, sleep disturbance, difficulties with concentration and muscle pain. The pattern and intensity of symptoms vary between people, and during the course of each person’s illness.
People often have symptoms for many years before M.E./CFS is diagnosed. Some patients recover fully and most improve to a varying degree over time. However, a significant minority remains very ill and do not respond to the therapies available.
M.E./CFS is a major cause of long term school absence in children with potentially devastating impact on their social and educational development.
Up to 25 per cent of patients are so severely affected that they are unable to leave their homes or their beds for prolonged periods which for some can last for years. In addition to their medical symptoms, the large majority of M.E./CFS patients experience significant degradation in the quality of their life. Most of those in employment are unable to remain in their jobs and experience extreme financial hardship.
They also endure a significant degree of social isolation, skepticism and even disbelief, because the illness has yet to throw off the wholly undeserved stigma that prevails in some quarters due largely to our scientific ignorance about its biology. (Taken from Action For ME)
Health minister Mark Drakeford this May 2014 launched a plan to help people with neurological conditions. M.E is a neurological condition.
Key points taken from Mark Drakefords neurological delivery plan
Health Minister launches Neurological Conditions Delivery Plan
Health Minister Mark Drakeford has launched a plan setting out new commitments to help people with neurological conditions. Dated Thursday 8th May 2014. Welsh Government.
Neurological conditions affect approximately 500,000 people in Wales. The Neurological Conditions Delivery Plan provides a framework for action by health boards and their partners. It sets out the Welsh Government’s expectations for the planning and delivery of high-quality person-centred care for anyone affected by a neurological condition. It focuses on meeting population need, tackling variation in access to services and reducing inequalities across seven themes:
- Delivery theme one: Raising awareness of neurological conditions
- Delivery theme two: Timely diagnosis of neurological conditions
- Delivery theme three: Fast and effective care
- Delivery theme four: Living with a neurological condition
- Delivery theme five: Children and young people
- Delivery theme six: Improving information
- Delivery theme seven: Targeting research
Questions to Mark Drakesford
This report shows acknowledgement of a need. How is this going to be achieved for those with the neurological condition M.E when doctors currently don’t recognise, rarely diagnose and are even taught that M.E does not exist??
How are people with M.E going to be catered for when M.E is not recognised as a neurological condition??
Thank you Welsh Assembly for allowing us to present this petition to you asking for a dedicated consultant/clinic and medical support team for people with M.E.
We also have an added 1000 signatures on a paper petition.
We have spoken to many Health Ministers over the years Jane Hutt, Edwina Hart, Brian Gibbons, Lesley Griffiths, now Mark Drakeford. It’s good to talk but seriously, we need some action. Please end this ignorance.
This is a golden opportunity for Wales to be paramount in the fight to recognise and treat this terrible illness which effectively robs those of everyday life who fall foul of this vindictive ailment.
We commend this petition to you.