News | The ME Association

Dr Charles Shepherd For people with ME/CFS who have been unsuccessful in obtaining a priority vaccination from approaches made to GPs, the next recourse of action is to reach out to local clinical commissioning groups (CCGs) in England or the health boards in Wales or Scotland.   Unfortunately, the MEA have received very mixed feedback from people who […]

The ME Association are asking our supporters to take part in the Captain Tom 100 Challenge, which will take place over the next Bank Holiday weekend – which would have been the weekend of his 101st birthday.  His daughter, Hannah Ingram-Moore, is urging people round Britain to create their own challenge themed around the number 100 to […]

From the Sunday Post in Scotland published April 11th 2021 Scots suffering Long Covid fear a postcode lottery means effective diagnosis and treatment depends on where you live and on which side of the border. Ewan Dale, from the MEA said: “People with Long Covid are approaching us but there is no place to send […]

New position statement from the American Autonomic Society on PoTS and Long Covid Abstract While the acute impacts of COVID-19 were the initial focus of concern, it is becoming clear that in the wake of COVID-19, many patients are developing chronic symptoms that have been called Long-COVID. Some of the symptoms and signs include those […]

With vaccination programmes underway across the globe, attention is turning to the longer-term impact of COVID-19 and in particular the condition termed ‘long Covid’. Very little is known about the condition at the moment, despite some studies estimating that 1 in 20 are affected. Large-scale research projects and population studies are now looking at the […]

Forward-ME is undergoing a reorganisation and considering how it would best serve the patient community in the future. After many years of dedicated service, the Countess of Mar is stepping down and will be replaced by Andrew Morris as Chair (see biography, statement and minutes below) with immediate effect. Forward-ME will be led by Andrew […]

Russell Fleming, Content Manager, ME Association Some people with ME/CFS have expressed concern about the new chronic pain guideline from NICE. But the recommendations contained in this guideline e.g., use of exercise and therapy instead of analgesic medications, are not aimed at people with ME/CFS.  The new draft of the NICE guideline for ME/CFS (due […]

Half a lifetime later, Jamie Rule talks about his recovery from M.E.

Dr Charles Shepherd, Hon. Medical Adviser, ME Association The Annual General Meeting of the All-Party Parliamentary Group on Myalgic Encephalomyelitis (ME) will take place on Monday 19 April between 11:00 – 12:00.  In addition to AGM business, this meeting will focus on the impact of the COVID-19 pandemic on the ME community. Points of discussion will include the clinical and pathological overlaps between […]

On March 30th 2021 Radio 5 ran a segment on Long COVID featuring stories from people with the condition, Professor Helen Stokes-Lampard and Dr Shepherd. The interview to highlighted similarities and differences between Long COVID and ME/CFS. The full transcript is shown below and you can listen to the broadcast from the link below. Full Transcript  […]

Russell Fleming, Content Manager, ME Association  Dear Stakeholder,  Because of the large number of comments received during consultation on the ME/CFS guideline, and the additional work needed to respond to them fully, the publication date has changed. The guideline will now publish on 18th August 2021.   29 March 2021  The ME Association was expecting NICE (The National Institute […]

On the 25 March, Jackie Brambles was standing in for Kay Adams on the BBC Radio Scotland Mornings show and held a phone-in with Dr Punam Krishnan around the issues of Long Covid.   The show was in general very helpful. It reviewed, for example, the recent Long Covid study from the University of Leicester last week which concluded that seven in ten patients hospitalised with COVID-19 were not […]

I could see there was going to be an issue with people with M.E. getting the Covid-19 vaccination because of the same issues we have had trying to get a free Flu Vaccine.   I didn’t have any success when I sent a letter to my GP asking whether I would be given the vaccine under […]

An article has appeared on the BBC website with research suggesting middle-aged women experience the most severe, long-lasting symptoms after being treated in hospital for Covid-19. This highlights some similarities with ME/CFS along with some differences. Some quotes are shown below and the full article can be seen here. The PHOSP-Covid study also found that […]

The full transcript is shown below 00:00:00 Vicky Gibbens   Here on UCB1. It is talking point and there’s more people continue to recover from coronavirus. Many is still reporting this idea of Long Covid, ongoing symptoms that they just can’t quite shake off for many weeks. However, at the same time, we’ve got some charities very concerned, as you know, the NHS seeks […]

Each condition has different symptoms and are very debilitating to live with. I have regular therapy to help me cope with these challenges.   I’ve suffered many different illnesses over the years including Campylobacter, recurring acute Tonsillitis, Shigella, Neuralgia, Paroxysmal Hemicrania, food intolerances, severe pre-cancerous cells, post-viral optic neuritis, burst cysts, and many more.   I’ve had 7 surgeries for […]

Dr Charles Shepherd, Hon. Medical Adviser, ME Association  For people with ME/CFS who have been unsuccessful in obtaining a priority vaccination from approaches made to GPs, the next recourse of action is to reach out to local clinical commissioning groups (CCGs) in England or the health boards in Wales.   Unfortunately, we are receiving very mixed feedback from […]

‘Long Covid’ has become shorthand for a wide range of post-viral symptoms experienced by some patients following a Covid-19 infection. Cases of chronic fatigue after acute respiratory illness are far from unprecedented, but the scale at which they are now occurring is unprecedented. Advocates for patients with similar illnesses are now hoping that the attention […]

Jennifer Rigby and Sarah Newey, The Telegraph Extracts The coronavirus vaccine may alleviate the symptoms of people suffering from long Covid, according to patient groups and scientists studying the condition.    Around one in 10 people who test positive for Covid-19 end up with ongoing symptoms for up to 12 weeks, with a smaller number facing problems […]

The ME Association response was published here in the Guardian Sun 14 March 2021. We have reproduced it below: Dr Alastair Miller, Professor Paul Garner and Professor Peter White are not correct when they state that graded exercise therapy (GET) is a safe and effective treatment for ME/chronic fatigue syndrome (Letters, 11 March). Having reviewed […]