The York ME Community has been a hub of support for many people with ME in York and the surrounding areas since 2016. However, the group has reported a huge increase of people needing support and information during the COVID-19 pandemic. With around 1,000 people suffering from the disease in York the group is a lifeline to many.
The York ME Community Facebook group has seen an increase in traffic during lockdown as many people have highlighted that sufferers have been in their own personal ‘lockdown’ for years.
Bill Clayton, founder of The York ME Community, feels that the Facebook group has offered a safe space for many throughout the pandemic. He reports that many people with ME have contacted the group via Facebook and Twitter throughout these difficult times.
“One of the major topics has been the lack of support from GP’s in getting those with ME vaccinated in Group 6 along with those with other neurological conditions.Bill Clayton, York ME Community founder.
I had a long conversation with the Chairman of Nimbuscare, who runs 11 GP Surgeries in York, and as much as he sympathised with us, he said because the word from government was that it was down to GP’s to decide on behalf of individual patients, his hands were tied.”
As many charities and support groups have voiced similar struggles Bill feels it is important that people with ME fight to get their voices heard.
“We really do need a voice to ensure our case is heard much better, rather than being forever side-lined.Bill Clayton, York ME Community founder.
As much as a template letter from The ME Association helped, in the vast majority of cases it was ignored with patients told that they would have to await their age group being called forward. It seems many GPs still need to be educated with regard to ME.”
Bill reported that The York ME Community Facebook group was recieving round the clock requests for additional support and information from people with ME. The group’s rich depth of experience has tried to find answers to the many questions that are being asked.
Better support is urgently needed for people with the disease as many support groups and charities are becoming overwhelmed with similar questions.
As many charities and groups are preparing for ME Awareness month next month (May) many sufferers will hopefully feel united on the day.
The York ME Community does not have capacity to host their own Millions Missing event but Bill plans to celebrate the occassion in his own way. In previous years York ME Commuinity has discussed various ways to mark Millions Missing.
“As a group, it’s difficult to look to others to organise an event or action when you know that their energy and health is so poor. In previous years when we’ve discussed it, most are up to lending ideas but not to physically promise to be active on the day, and so previous ME Awareness Days have not been marked in the way that other groups have been so successful.
This year again, people are reluctant to come forward, but I totally understand, and it’s this lack of being able to join in that drives me to raise awareness. This is a major difficulty we have as a community, wanting to raise awareness, but not having the energy to do so.”Bill Clayton, York ME Community founder.
Bill appreciates that it’s difficult for people with ME to commit to events such as Millions Missing (12th May). The events take a huge amount of planning and preperation, something which many sufferers cannot afford to give.
Bill has his own plans for the day and is writing an article for ME Action, planning to share his ME poetry and will be raising awareness via ME Awareness Hour on Twitter.
He has also contacted the City of York Council in regard to having a public building lit up blue, something he has been successful in organising for previous years.
He’s also aiming to get ME on local radio stations and Facebook groups too.
To keep up to date with Bill and The York ME Community follow their social media.