Campaigning
M.E awareness for 2017
Awareness helps in several ways: it educates the public and healthcare providers, reducing stigma and promoting early diagnosis; it drives funding for research into causes and treatments, as there’s currently no cure; and it fosters empathy and support for those living with ME, who often feel isolated due to the condition’s impact on their daily lives. By shining a light on ME, we can improve quality of life for millions and push for better medical and social resources.
raising awareness for 2017
Raising awareness for Myalgic Encephalomyelitis (ME), also called Chronic Fatigue Syndrome (CFS), is vital because it’s a misunderstood and often invisible illness. ME is a severe, chronic condition that impacts multiple body systems, leading to extreme fatigue, pain, brain fog, and post-exertional malaise—where even small activities worsen symptoms.
This Years Focus
The ‘MUPS’ publication
About the pro forma letter to NHS England
The ‘MUPS’ publication relates to England only. If you live elsewhere in the UK it does not apply. We therefore advise that only members living in England send the letter.
Please remember to put your address on the letter for reply.
Letters can be more effective if they are personalised. You may wish to say something about your own situation / experience – particularly if you have already experienced medical neglect, or inappropriate attitudes or management due to your illness being viewed as a mental or behavioural disorder.
We will place this item at the ME Awareness 2017 section of the 25% ME Group website so that if you have web access, you can download a copy to edit.
The NHS continues to collude in the portrayal of Chronic Fatigue Syndrome / Myalgic Encephalomyelitis as a “functional somatic syndrome” under the guise of “medically unexplained symptoms”. As you may recall, this was the focus of last year’s ME Awareness campaign which involved writing to the Chief Executive Officer of NHS England (part of the Department of Health).
Form letter to NHS England
The care needs of people with Severe ME
With so much misinformation, misinterpretation and misunderstanding about ME in the public domain, it is important that Carers and Agencies providing care are in receipt of accurate and safe information on how to provide care in the best way.
Response to BACME paper
Follow-up to NHS England
Personal Independence Payment
The replacement of Disability Living Allowance with Personal Independence Payment (PIP) for adults of working age is underway.
So we are sending out this questionnaire, asking about your experiences of claiming PIP.