Explanations from M.E. Charities, plus recent news articles.

M.E. Association: article - Update: Post-Covid Fatigue, Post/Long-Covid Syndromes, and ME/CFS.
On 27 July Dr Charles Shepherd explained why the MEA has been devoting so much time and effort to covering issues relating to Post-COVID Syndromes.  The MEA article explained the particular reasons -

• the possibility that people with post-COVID fatigue and post/long-COVID syndromes are going to receive preferential treatment from the NHS for very similar health problems that occur in people with ME/CFS.
• people with post-COVID fatigue and post/long-COVID syndromes are being cautioned against the use of graded exercise treatment (GET) whereas NICE has refused to remove this treatment option from the current clinical guideline for ME/CFS.
• the considerable amount of research and research funding that is being directed at post-COVID fatigue and post/long-COVID syndromes compared to what has happened to government-funded research into ME/CFS.

There is a lot of overlap between post/long-COVID symptoms and the sort of Post-Viral Fatigue Syndrome (PVFS) that often precede a diagnosis of ME/CFS.  A number of post/long-COVID people are now developing post-COVID ME/CFS.   The MEA article gives MEA explanations on the ‘Key Principles of Management’, and ‘Post/Long Covid Groups’ - Post-COVID intensive care/hospital care syndrome;  Post/Long-COVID Self-Managed Syndrome;  plus Post/Long-COVID Fatigue Syndrome & Post-COVID ME/CFS.
 
Action for M.E. (AfME) CEO Sonya Chowdhury on the potential rise of M.E./CFS.
On 2nd July, AfME CEO Sonya Chowdhury spoke on BBC Points West about the potential rise in M.E./CFS following Coronavirus, and the number of people who are experiencing problematic or delayed recovery from COVID-19. She says:
"The ongoing exhaustion, and inability to return to previous activity, is something that has shocked many, including those who may have been asymptomatic or had relatively mild COVID, as they are now experiencing difficult and challenging symptoms."
We’ve seen a 30% increase in enquiries for information and often urgent support relating to the pandemic, from people with M.E. unable to access services and essential supplies. We have now begun formally recording numbers of those seeking support with post-Coronavirus symptoms that have not gone away.
 
MEAction give full details on Post-COVID-19 illness 
There have been some reports of long term illness in survivors of COVID-19; it is unclear how many people are affected at this stage.[1]  [2]  [3]
One small study from Wuhan, China, found that survivors of COVID-19 who tested negative twice before discharge from hospital still had some abnormalities in metabolism and liver function markers when discharged.[4]
Postviral fatigue syndrome and ME/CFS:
Myalgic encephalomyelitis, better known as ME, is a neurological disease that commonly begins after a virus, although other possible triggers include bacterial infections, injuries, surgery and other events.[15]  [14]  [25]
Some researchers and some patients use the term chronic fatigue syndrome (CFS), or ME/CFS to refer to ME, although CFS has different diagnostic criteria.[16]  [15]  [14] The older term Postviral fatigue syndrome (PVFS) is rarely used, although the World Health Organization recognize PVFS, ME, and CFS using the same diagnostic code. Some countries including the United States, deviate from this.[25]  [26]
 
BBC Spotlight: Covid-19 and Post-Viral Fatigue Syndrome with Dr Charles Shepherd.
BBC Spotlight (South-West) featured a report about people who had contracted Covid-19, survived the infection but had failed to fully recover their previous level of health.  Jenny Walrond, BBC Health and Science Correspondent, speaks with one woman whose functional improvement hasn’t materialised and says that thousands have joined social media sites to report a similar failure to recover.  The article gives a link to the two minute broadcast - "BBC Spotlight Report on the Long-Term Effects of Covid-19 Infection" (25 June 2020)
 
ITV News: "What is Long Covid?" - ITV News Interview featuring Dr Sarah Jarvis and Gez Medinger"
Six minute interview broadcast live on ITV at 1.40pm on 21st July.  News anchor Nina Hossain introduces the Long Covid SOS film  (https://www.youtube.com/watch?v=eYfDON0XsA8&feature=youtu.be), and speaks to Dr Sarah Jarvis and long hauler Gez Medinger about the condition.  Response from Dr Charles Shepherd amongst the comments.
 
M.E. Association: Coronavirus warning as victims staying sick for MONTHS with 'post-Covid syndrome'  On 7 July, The MEA’s article includes quotes from The Express article CORONAVIRUS sufferers may be experiencing a “post-COVID syndrome” according to expert Dr Charles Shepherd who warned that even “fit young adults” were being subjected to debilitating fatigue for months.  Thousands of Britons have reported a failure to recover from coronavirus infections despite surviving the virus.
The article included a link to a BBC Radio 5 Live discussion, when Dr Charles Shepherd was present, in which callers who revealed they had been ill for up to four months.
 
America’s top covid doctor turns ME/CFS into a subject for general discussion as the pandemic deepens
On 10 July, Tony Britton, Fundraising and PR Manager, of the MEA explain -
In a week in which we heard that cases of Covid-19 had doubled globally in the last six weeks to 12 million, President Trump’s top medical adviser on the coronavirus crisis has been showing a respect to ME/CFS that’s never been made so public before.
Dr Anthony Fauci, who has been striding the world pandemic stage usually in the shadow of the President, told a news conference organised by the International AIDS Society yesterday that the symptoms seen in long-haul Covid-19 recoverers resembled those seen in patients with M.E.
 
For some sufferers, Covid-19 doesn’t come with an end-by date – it just goes on and on   On 10 July, The MEA’s article includes quotes from The New Statesman article 
For #LongCovid sufferers - around 5 per cent of those who catch the disease - debilitating symptoms drag on interminably, with a quote from Dr Phil Whitaker’s - “Tantalisingly, what I hope will be an eventual research effort into #LongCovid patients may shed some light on other ill-understood conditions associated with a viral trigger, most notably chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME).”
 
PhysiosforME: Covid-19: Post Viral Fatigue Syndrome and Myalgic Encephalomyelitis
This 30 minute YouTube recording from PhysiosforME gives an overview of Post Viral Fatigue Syndrome, its link to ME and management priorities.   It is vital for physiotherapists (and any other treating health professional) to understand a potential complication of a viral infection - Post Viral Fatigue Syndrome (PVFS).  Further information on their website.

•  Action for ME •  B.B.C.
•  Coronavirus (COVID 19) •  #MEAction
•  M.E. Association •  National Newspapers

Severe M.E. was featured on BBC Radio 5 live - in the Afternoon Edition programme. 
You can listen to the ME/CFS feature at - www.bbc.co.uk/programmes/b0bd75rp  - it begins at 2hrs 8mins into the broadcast.  It followed the 3pm news and continued until about 3.35pm.

Dr Charles Shepherd, the ME Association Hon. Medical Adviser, was interviewed by presenter Nihal Arthanayake, along with a former university student suffering from severe M.E.  The feature also included pre-recorded interviews from Gary Burgess and Merryn Crofts' sister Amy Williams, and feedback from listeners about their experiences.

Around one in four people with M.E. are severely affected by the condition. They are house or bed bound, unable to properly care for themselves or even wash properly, with some even reliant on tube feeding.  Many people with M.E are light and sound sensitive, with people with Severe M.E. often forced to live their lives in darkened rooms.

Severe M.E. articles from Action for ME and the ME Association

Action for M.E. highlight their awareness-raising film, My life is over: the pain of severe M.E., explaining what it's like to live with severe M.E.  Plus, Emily Collingridge’s book Severe M.E./CFS: a guide to living offers guidance on every aspect of living with severe M.E.

M.E. Association’ press release concentrates on two teenagers hit by devastating severe M.E. who reveal the brutal reality of life with the disease. 

The MEA detailed article gives links to

• Daily Mail 'Teenager is left battling chronic fatigue after a parasite burrowed into her EYE: 19-year-old claims the bug was in tap water which ended up on her contact lens and could now kill her'
  
• Daily Mirror 'Girl’s life ‘ripped to pieces’ after parasite found in tap water burrows into eye where it is now sleeping'

BBC Radio 4 is running a series on Care in the UK see: http://www.bbc.co.uk/radio4/youandyours/careintheuk/index.shtml

Have you anything you would like to add to:
Radio 4 message boards > Care in the UK > Carers of people with ME, CFS, and FMS
at:
http://www.bbc.co.uk/dna/mbradio4/F9042615?thread=4963712     Radio 4 message boards > Care in the UK > Welcome to Care in the UK
Welcome to the Care in the UK message board. Throughout January, You and Yours, along with Woman’s Hour, will be examining social care – the care of elderly and disabled people – which has been described as one of the biggest unresolved issues of our time. As more of us live longer we're starting to realise that longevity comes at a price. It has been compared in scale with the pensions crisis.

On Monday January 7th at midday You and Yours will be launching the Care in the UK season with a special programme. We’ll be talking to the key figures including the minister Ivan Lewis, Niall Dickson of the King’s Fund thinktank and social services spokesperson John Dixon.

On January 14th we will be unveilling a Care Calculator on this website and a questionnaire which will help you to contribute your thoughts to the national debate surrounding how social care is provided and funded.

During the month we will be looking at many different aspects of social care including the history of care, alternatives to the conventional residential care home, how other countries organise their social care and how care businesses have changed over the last 20 years.

You will also be able to hear Tony Robinson and actress Laura Linney talk about their own experiences of social care.

On this message board you will be able to discuss the issues you hear on the programmes. Feel free to share your feelings, offer support and describe your experiences.
Victoria, You and Yours Team
   

Jill Pigott 
Patient/Carer Representative 
Worcestershire M.E. Support Group