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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 COVID-19. There is now a
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. Development and publication of the new ME/CFS
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. Join us by asking your MP to write to Matt Hancock too and telling them about your experience of ME.
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 before the pandemic, and that they are aware of concerns around graded exercise therapy.
£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 hopes to reveal the tiny differences in a person’s DNA that may affect their risk of developing ME/CFS, and the underlying causes of the condition.
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 are under review. Despite #MEAction
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 from: Dr Nigel Speight –
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 the research of many others,
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, professionals, charities and organisations such
1000 Reps a Day for #MEAction – Fundraiser success!
Ellie Rushton, from Birmingham UK, recently raised an amazing £1000 for #MEAction UK, by doing 1000 bodyweight reps every day for 6 months! We are so thankful to Ellie for her determination to support #MEAction and people with ME. Please, find below a few words from Ellie about her experience! “When I started this fundraiser
Thousands add messages to 6m long card
In light of an oncoming wave of people experiencing post-viral complications and potentially post-viral ME, telling our story is more important than ever. “I would expect that people who have Covid-19 symptoms quite severely, of those, I would expect about 10% to have fatigue-like syndromes after 6 months, given current evidence.” – Professor Chris Ponting,
NICE suspend work on new ME guidelines
The National Institute of Health and Care Excellence (NICE) have suspended work on all guidelines currently in development due to the Covid-19 pandemic, including their update of the ME/CFS guideline, originally due to be published October 2020 and recently delayed by NICE to December 2020. We support NICE’s aim to keep healthcare professionals on the