Earlier this year #MEAction UK wrote, distributed and analysed a survey in response to The National Institute for Health and Care Excellence (NICE) releasing a call for evidence as they rewrite the ME guideline. Our full report from that survey found that ME/CFS services in the UK are not fit for purpose. Results identified that there was a failure of services to provide ongoing support or follow up which left respondents feeling abandoned and without help. Moreover, the experience of respondents showed that many ME services are providing unsuitable advice and treatments that often have a negative impact on patients’ health.
The survey asked respondents which service they attended, and whilst results showed worse outcomes for children and young people’s services, it also showed wide variation even within regions and the services themselves around the advice and input people with ME were receiving.
In order to break this down further, #MEAction UK advocates Sian Leary and Paul Duley have put together a dynamic dashboard, allowing anyone to view the data gathered for a specific region or service.
Some services had very few responses, so we advise caution in assessing these results, however, we felt it helpful for those newly diagnosed or referred to a service, or those being re-referred after many years of illness, to be able to see what experience respondents near them had through these services.
- We recommend viewing the dashboard on a laptop or computer, using a common browser such as Chrome, Mozilla Firefox or Edge. Unfortunately, the dashboard may not work on all phones and tablets.
- To choose a specific region/service first click where the button says “All”, then click “Clear” in blue. Click the service you wish to view results for, and finally scroll down to click the larger green “Ok” button. Wait a few seconds for the results to load and scroll to see all the charts.
3 thoughts on “How did your local ME service perform?”
How come the M.E. Community is so much stronger in the U.K. than in the U.S? All of the reports, testing, etc. all comes from the U.K. I have joined every advocacy group that exists. I receive emails regularly from Cort Johnson who helps to interpret what is going on all over the world with M.E./Fibro. Yet just 3 years ago the head of the Rheumatology dept at our State’s teaching hospital had never heard of M,E. Or myalgia Encephalomyelitis. When I told her the symptoms were like Chronic Fatigue ~she quickly said “everybody gets chronic fatigue at one time or another”. She then left the room.
I am now completely bedridden and can’t make it to the bathroom ~let alone a Dr. Appt. So now I’ve been 3 years with no healthcare of any kind. No dental care. Nothing. Yet I am still forced to pay $1,000 per month for health care insurance which doesn’t include prescriptions.
There is something terribly wrong with the way M.E. Patients are treated.
Am not sure that we are much better off in UK. GPs are not well trained in chronic illness of any kind.
My daughter received the best medical advise from Dr Sarah Mayhill and was fortunate to be one of her online patients. She slowly tried out Dr S’s recommendations (good routine, diet, supplements, infra red saunas) to find her way through this illness. After 5 years there was little progress and then Dr SM suggested a toxicity test. High levels of mercury were found in the body (dental amalgam to blame). After a long and tentative detox the levels dropped to normal and daughter is no longer bed ridden but can walk. After almost 6 years in bed with few visitors she is now trying to live a life. It is never easy with this complex illness. Daughter has recently been diagnosed with acute adjustment disorder which we have been assured is transient. For me, her mum, I have to adjust too – from being a carer to a role of safe guarding. We are all on a learning curve here and it is not easy.
Three cheers for Sarah Myhill. Her website is amazing and her books are well worth a read. She is not always right, but she is definitely going in the right direction, We need a lot more like her and a lot more resources devoted to research – and that money will not come from big pharma. Not yet.
Best Wishes in your journey towards health, Kathareine.
We have no M.E services at all in Oldham or Manchester.
All due to lack of interest of off NHS who claim M.E doesn’t Exist.
So we don’t get ANY SERVICES and no resources
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