The ME Association is part of the ME Local Network – a network of representatives of local support groups who are currently seeking your views on PIP renewal problems. Below is an outline of the aims of the group together with links to the survey.
Who are MELN?
ME Local Network was set up last year to link together ME friendship and support groups across the UK. The aims of this network include strengthening mutual help between local support groups, sharing information and best practice, ensuring the grassroots voice is heard and feeding back to national charities and organisations.
- Please refer to the full aims of our network.
The network currently comprises 21 local groups and meets roughly every 6 weeks. We have created 2 subgroups around Clinics outreach and Benefits work, that meet in between the general sessions. We keep in touch via emails and a private online forum.
We are committed to support each other to better support our local communities, and to influence change on a local and wider level. If your group would like to be part of MELN, to benefit from the experience of other local groups and help create a strong grassroots voice, we would be delighted to hear from you.
- You can contact us by email: email@example.com
Please note that we are run by volunteers and most of us have ME so replies may take a few days, but we will get back to you. If you are able to volunteer to help, even in a small way, please do get in touch.
Personal Independence Payment (PIP) Survey: Renewal Issues 2019-2022
As part of our campaigning work ME Local Network is currently conducting a simple survey on PIP delays and would welcome your input if you have ME/CFS. We want to hear from as many people as possible who have experienced delays with new applications OR renewals for Personal Independence Payments.
The closing date for this survey is 31 December 2022
We are collating numbers of people affected by PIP delays so that we can lobby MPs and put pressure on the DWP to resolve these issues with delays. We therefore need as many people as possible to let us know about their experiences. We would welcome your anonymous input if you have ME/CFS.
The ME Association: Website Terminology
PVFS – Post-Viral Fatigue Syndrome
CFS – Chronic Fatigue Syndrome
ME – Myalgic Encephalomyelitis or Myalgic Encephalopathy
Long Covid – Post-Covid Fatigue Syndrome
PACS – Post-Acute Sequalae of Covid-19
MERC – ME Research Collaborative
NICE – National Institute for Health and Care Excellence
DHSC – Department of Health and Social Care
DWP – Department of Work and Pensions
RRF – Ramsay Research Fund
DecodeME – The world’s largest genetic study on ME/CFS
JLA PSP – James Lind Alliance Priority Setting Partnership on ME/CFS
UKRI – UK Research and Innovation
MRC – Medical Research Council
NIHR – National Institute for Health and Care Research