Russell Fleming, Content Manager, ME Association
The Government announced last week that NHS England was to invest £10million in a network of clinic across England to help support people who have been unable to recover from Covid-19 infection.
This announcement followed the earlier NICE declaration that it was going to be working on a new clinical guideline with its Scottish counterpart that would detail assessment and treatment recommendations.
The guideline would also, presumably, help settle the ongoing discussion around a suitable name for Post/Long Covid Fatigue Syndromes.
Neil Riley, Dr Charles Shepherd, and Tony Britton from the ME Association expressed their thoughts on this latest development in The Times, Politico Europe, and GM online (see below).
The Guardian reported on the main announcement:
“The head of NHS England, Simon Stevens, announced the investment on Wednesday amid concern that hundreds of thousands of people may be unable to get the care they need to recover from prolonged and debilitating symptoms.
“Estimates have suggested that 10% of Covid patients may still experience symptoms more than three weeks after infection, and up to 60,000 people may suffer from long-term effects after more than three months…
“Respiratory consultants, physiotherapists, other specialists and GPs will assess, diagnose and treat patients who have reported symptoms ranging from breathlessness to chronic fatigue, “brain fog”, anxiety and stress.
“Patients will be able to get physical, cognitive and psychological assessments, which can identify chronic health issues, memory, attention and concentration problems and mental health conditions including PTSD.
“Post-assessment, they can be referred to specialist lung disease services, sleep clinics, cardiac or rehabilitation services, or signposted into mental health services…”
The Guardian, Haroon Siddique
Wednesday 07 Oct 2020
Neil Riley, Chairman of The ME Association, wrote to The Times about this development:
“Sir,
“We welcome the proposal to establish “long Covid” clinics within the NHS (report, Oct 8).
“There are thousands of people who will require their symptoms to be managed by specialists over the next few years. It is to be hoped that the lessons learnt from the experience of patients suffering long-term illness from the effects of viral infections will be taken on board.
“The use in NHS clinics of graded exercise and cognitive behaviour therapies in such cases is based on a fallacy. It is the idea that the overwhelming fatigue and brain fog stems from prolonged bed-rest and a misplaced illness belief. That holds as much water as a sieve, as long Covid patients will testify.
“Our charity has campaigned for years against this inaccurate view. It is sad that it has taken a pandemic to persuade the medical profession to take long-term viral infection seriously.”
Times letters: Long-term approach to living with Covid-19
Saturday 10 October 2020
Dr Charles Shepherd, Hon. Medical Adviser to The ME Association, was featured in Politico Europe:
“The need to get information out to family doctors is something that Charles Shepherd, medical adviser to the ME Association, is campaigning for. It’s also one of the recommendations he gave to British Health Secretary Matt Hancock’s office recently.
“In fact, the long-term effects of COVID-19 came as no surprise to Shepherd, who has spent 40 years studying post-viral fatigue syndromes.
“He worries that people with long COVID are falling into the same situation as those with myalgic encephalomyelitis (ME) or chronic fatigue syndrome, because “doctors don't know what to do with them.”
“For years ME has been misdiagnosed, dismissed as not a real illness and under-researched — something that Shepherd doesn’t want to see on a wider scale.”
Politico Europe, Ashleigh Furlong
Saturday 10 October 2020
And Tony Britton, PR and Fundraising Manger to the ME Association, was featured in GM online:
“Although this is not an isolated occurrence, for decades many people have been diagnosed with the ill-defined Chronic Fatigue Syndrome (ME/CFS), supposedly brought on after a viral infection.
“Chronic Fatigue Syndrome has been long debated within the medical community as to whether it is better defined as originating from a psychosomatic illness, being a response to psychological trauma, or if it is defined as a physical illness initiated by a viral infection, or has a genetic/hormonal basis.
“A spokesperson for the ME Association, a charity that advocates for people affected by ME/CFS, said that:
“For the past few months, more and more people with long covid tails – the inability to shake off some very distressing symptoms that have lingered since their infection – have been coming to the ME Association, either suspecting that their illness has tipped over into ME, or with actual medical diagnoses of post-Covid ME/chronic fatigue syndrome.
“We're meeting well over a hundred people a week who are extremely worried how their lives might shape out for the worse after a Covid-19 infection.
“We've never known a time like this. Because the timespan is so short between initial infection and chronic illness, there is now a once-in-a-lifetime opportunity for science to establish whether a brutal new infection is triggering long-term disability in people with ME/CFS, some of whom never recover their health.”
GM Supporting Healthcare Professionals in 50+ Medicine, Ed Brown
Friday 09 October 2020
ME Association Free Leaflets
The Lockdown, Reducing Risk of Infection, Employment Issues, Post-Covid Management, and ME/CFS. Visit the website shop to download or click the links below:
- Covid-19 and ME/CFS: A Lockdown Summary
- Covid-19 Reducing the Risk of Infection
- Covid-19 Key Points about Employment
- Covid-19, Post/Long-Covid, Post-Covid Fatigue Syndromes and ME/CFS
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