COVID-19 and Long haul COVID Resources

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Training opportunity to join our UK and Scotland social media teams

We have 6 places available on a digital marketing training course. Being able to communicate information effectively and efficiently is key to much of the work #MEAction does. We are looking for new volunteers to join us. If you’d like to help us reach and engage our target audiences, we’d ...

Good Morning Britain gets it wrong on post-COVID treatment and ME

#MEAction UK has written a letter of complaint to Good Morning Britain in response to recent statements from Dr Hilary Jones on the programme, regarding the rehabilitation of long COVID patients. In his interview with Kate Garraway yesterday, Dr Jones recommended graded exercise as a strategy for those recovering from ...

Open letter demands action to safeguard people with ME, not just post-COVID patients

#MEAction UK have once again written to the National Institute for Health and Care Excellence (NICE) imploring them to act to safeguard people with ME from harm, after their recent statement cautioning that the recommendation of graded exercise therapy should not be assumed to apply to patients with post-COVID symptoms ...
COVID viral particles float around a person wearing a facemask that says MillionsMissing

Take action: graded exercise harming people with ME and COVID long haulers

#MEAction UK has sent an open letter to Matt Hancock asking him to recognise the harm caused by graded exercise therapy. We are calling on him to ensure all advice for people with ME, and those at risk of developing ME post-COVID, warns of the harm from graded exercise therapy ...
Reflection of woman with COVID-19 virus imposed on top

Graded exercise therapy not recommended for post-COVID fatigue, say NICE

The National Institute for Health and Care Excellence (NICE) have released a document entitled “interim findings”, stating that the recommendation of graded exercise therapy for mild and moderate ME/CFS should not apply to people with fatigue following COVID-19. They note that the existing guideline was published in 2007, many years ...
DNA strands surround stamp that says Funded

£3.2million granted for largest ME/CFS DNA study ever

Funding for the world’s largest genetic study into myalgic encephalomyelitis (ME), led by a partnership of patients and scientists, has been announced. Thanks to £3.2 million funding, awarded jointly by the Medical Research Council and National Institute for Health Research, work can begin on DecodeME, the ME/CFS DNA study that ...
Take ME Seriously #MEAction UK

NICE continue to promote defunct treatment for post-viral illness

At the end of April, #MEAction UK sent the National Institute of Health and Care Excellence (NICE) a six-metre-long card containing thousands of your names and messages describing the harm caused by graded exercise therapy (GET). NICE continues to recommend graded exercise therapy in their existing ME/CFS guidelines, whilst these ...
APPG on ME AGM

APPG on ME – Next meeting scheduled

The All-Party Parliamentary Group (APPG) on ME will be resuming work on their report at a virtual meeting on Tuesday 16th June. This meeting will cover issues relating to children and adolescents with ME - including diagnosis, medical management, education and inappropriate social services interventions. There will be three presentations ...
UK ME/CFS Biobank CureME logo

The UK ME/CFS Biobank: a rich resource of samples and data

It is a strange time to be writing about the work of the UK ME/CFS Biobank (UKMEB); as I write, our office has been closed for over two months and clinical visits have been paused indefinitely; samples cannot currently be distributed. COVID-19 has created many challenges to our work and ...
ME medical education module

New ME education module available for healthcare professionals

A new education module designed to teach healthcare professionals about ME has been released. Send the new module to your GP, using our email template. The module was created by the CMRC Medical Education group, led by Dr Nina Muirhead, and is available for free online. The Group includes patients, ...