Post-COVID Syndrome (long COVID) Post Covid-19 Fatigue;  Post/Long Covid-19 Syndromes;  Post-Covid ME/CFS.
Explanations from ME charities plus recent news articles.
 
New Free ME Association (MEA) 24 page Leaflet: The ME Association Guide to Post-Covid Fatigue Syndromes and Post-Covid ME/CFS.
Dr Charles Shepherd, Hon. Medical Adviser, of the MEA writes -
Back in April the ME Association became aware of an increasing number of people who had been ill with COVID-19 and were not improving, even after several weeks.  Almost all had been self-managed at home with an illness that mostly varied from mild to moderate in severity, but did not require hospital admission.  Most had debilitating fatigue, sometimes with continuing COVID-19 symptoms involving the lungs or heart in particular. Some had symptoms that are more consistent with the sort of post-viral fatigue syndromes that may precede ME/CFS.
 
Five months on and we are now in a situation where some people are being given a diagnosis, or a possible diagnosis, of post-COVID-19 ME/CFS.  In April the ME Association published a free guide to post-COVID fatigue and post-COVID fatigue syndromes.  This information has now been fully updated to cover all the developments that have occurred since then.  The ME Association has longstanding experience in the management of post-viral debility, post-viral fatigue syndromes and post-infection ME/CFS.
 
This new and comprehensive leaflet should be of help to people in relation to the management of post-COVID fatigue and some aspects of post-COVID syndromes where they overlap with ME/CFS symptomatology.

• At present, we have no firm indication as to how many people are experiencing persisting ill health following COVID-19. However, if current estimates of around 10% of people who were home managed are accurate, this could translate into around 60,000 people with some form of post-COVID ill health that has persisted beyond a month.
• According to Tim Spector, professor of genetic epidemiology at King’s College London, around 12% of sufferers report symptoms to the Covid Tracker app for longer than 30 days. One in 200 says the effects last for more than 90 days.
• Long-COVID, post-COVID fatigue and post-COVID fatigue syndrome are all being used as diagnostic labels.
• Many have debilitating fatigue as a primary symptom.
• Some have respiratory, heart and other symptoms that are the same, or very similar, to the acute infection – i.e. breathlessness, palpitations, intermittent fevers, loss of taste or smell.
• Others have symptoms that are very similar to those seen in post-viral fatigue syndromes that can follow any infective illness and may precede ME/CFS.
• Some have a combination of post-viral fatigue syndrome symptoms and acute COVID-19 infection symptoms.
• In cases where post-COVID syndrome symptoms have persisted for more than three months, and are consistent with those of ME/CFS, a diagnosis of post-COVID ME/CFS should be considered.

 
Action for M.E. (AfME)’s article - M.E., long Covid and getting the right support. 
 
AfME explain -
Forward ME has published an open letter addressing concerns and highlighting best practice with regards to rehabilitation of people with long Covid who are experiencing post-viral fatigue.
UPDATE An Early Day Motion for debate has now been tabled on this: scroll down for more, including a template you can use to ask your MP to support this.
Since the start of the outbreak there have been many voices in our community warning about the possibility of a spike in cases of M.E./CFS, following Covid-19 infection. A previous spike in post-viral fatigue was seen following the SARS outbreak (also a type of coronavirus).
Action for M.E. and other charities have raised concerns about some of the newly-published guidance aimed at supporting people with long Covid, based on addressing "deconditioning" with graded exercise therapy (GET), despite the potential for long Covid to lead to post-viral fatigue, which may develop into M.E./CFS.
We are working as part of Forward ME to challenge such guidance wherever it appears, and highlight good practice. Led by Physios for M.E., the group has produced a joint open letter to support this.
It says: "Instead of the usual ‘reconditioning’, we recommend that these patients should be helped to adopt a paced approach to activity management. This is used to avoid symptom exacerbation or post exertional malaise, a primary symptom of M.E., which can result in greater incapacity and even relapse. Similar issues also seem present in people struggling to recover from Covid infection [...] We feel it is vital that they do not receive graded exercise therapy (GET) as a matter of course because M.E. research and patient experience has shown it to be ineffective and harmful in many cases."
 
 
Recent News Articles
 
BBC Radio 4 on Tuesday 29th.  Long Covid -
Adam Rutherford explores the emerging science behind what’s come to be known as ‘long covid’.
Radio 4 , 11.00 am on Tuesday 29 September, plus 4.00 pm on Tuesday 13 October 

The Mirror on 26 September -
Brits describe their long-Covid symptoms that cause crippling pain for months

The Guardian on 26 September - 
I used to be Ms Covid Casual. But with a sick sister, that’s changed.  What I’ve learned about long-term Covid-19 has forced me to mentally reframe the risk factors and the way the future could play out
 
Daily Mail on 24 September -
Boris Johnson is urged to take action on 'long Covid' and formally recognise debilitating side effects of the disease that can last for MONTHS after recovery

The BMJ blog on 23 September -
The health, wellbeing, and employment arrangements for people with Long Covid remain unaddressed.  Layla Moran, MP and chair of the APPG on Coronavirus, says that awareness of Long Covid, and its seriousness, is too low 
 
BBC on 21 September -
Long Covid: 'My fatigue was like nothing I've experienced before', By Natasha Lipman, BBC News
 
TVNZ on 20 September -
Long-term fatigue dubbed the 'hidden toll' of Covid-19.  They say some of the symptoms of what’s currently known as ‘long Covid’ mirror a debilitating condition, seen in other viruses in the past, known as chronic fatigue syndrome or ‘ME’.  The little-known and mysterious illness, myalgic encephalomyelitis, is usually preceded by a viral infection and can last for years.
 
Long Covid.Org -
On 28th August 2020, LongCovid.org and partners sent a letter to Jeremy Hunt, Chair of the Health & Social Care Committee, to ask for the UK Government to assemble a multi-disciplinary Long Covid taskforce
 
For further Coronavirus (Covid-19) information specifically for people affected by ME/CFS see further posts on the blog.
 
Take care, and stay safe everyone.

•  Action for ME  •  B.B.C.  •  Coronavirus (COVID 19)  •  Post COVID Syndrome (Long COVID)  •  M.E. Association  •  National Newspapers 

The ME Association (MEA) Flu Vaccine Information and Guidance for 2020 - 2021. 
 
Dr Charles Shepherd, Hon. Medical Adviser, ME Association writes-
Each year we fully update the ME Association information and guidance on flu vaccination in relation to ME/CFS.
We hope to publish the free 2020-2021 leaflet by early October - once flu vaccination programmes begin, and we have all the relevant information about the new vaccine.
In the meantime you might find the following information helpful should you be thinking about having the flu vaccine this year.
The current [2019-20] 'ME Association information for the 2019 - 2020 flu vaccine' is available as a free download.  Most of the content will apply to the 2020-2021 vaccine - apart from the changes to eligibility criteria for a free NHS jab and related Covid-19 precautions:
 
Can someone with ME/CFS have a free flu jab if they want one?
If your GP is querying whether you are eligible to have a free flu vaccination on the NHS you need to point out that the answer is YES because:

• People with a chronic neurological disease are eligible for an NHS flu jab
  (NHS Green Book – Chapter 19, page 14).
• NHS England definitely classifies M.E. as a neurological condition: Intermittent and Unpredictable conditions.

 
Chief Medical Officer
“As you know, the risk of serious illness from flu and consequent hospitalisation and death is higher among those with underlying health conditions such as M.E.
“We know that people with chronic neurological conditions are approximately 40 times more likely to die if they develop flu than individuals who have no other underlying health conditions.
“The best way for people at risk from flu to protect themselves and their families is to get the flu vaccine. People with clinical risk factors are eligible to receive the seasonal flu vaccine free each winter.”
Dame Sally Davies, Chief Medical Officer, Department of Health, (2014)
 
COVID-19 and flu vaccination
A very important additional issue this year is the impact of COVID-19 and the Dept of Health’s decision to encourage far more people to have this flu vaccine protection.
A dose of flu plus COVID is going to be a very nasty combination of infections to have. People with M.E. are going to have to take this additional factor into consideration when deciding whether they are going to have a flu vaccine this year.
On a personal basis, I normally choose not to have a flu vaccine.  But I may well change my mind this year in view of COVID-19 - as this infection isn’t going to go away and there won’t be a COVID-19 vaccine available for widespread public use until any 2020-2021 flu epidemic is over.
 
 
Further recent articles -
Have you tried to get a flu vaccination in the UK?  (Guardian article, 22 Sept).
The Guardian would like to find out from people who’re eligible for a free flu vaccination about their experiences of getting the vaccine.  This article includes a form to complete.
 
Flu jabs limited due to high demand (from the BBC, 24 Sept 2020)
 
Boots stops taking flu jab bookings for under-65s as stocks run low (from the Guardian, 22 Sept 2020)
 
Worry over county’s flu vaccination statistics (from the Worcester News, Dec 2019)  
More than a third of the people eligible for free flu vaccines in Worcestershire did not take them up last winter, figures show.
 
Worcestershire NHS workers set the bar for flu jab uptake   (from Malvern Gazette, Feb 2020)
Frontline staff at Worcestershire Health and Care Trust have one of the country's best records for getting flu jabs to protect themselves and their patients, new figures reveal.
 
NHS Health Check, vaccinations and immunisations (Worcestershire County Council article)

•  B.B.C.  •  Coronavirus (COVID 19)  •  Local News  •  Malvern 
•  M.E. Association  •  National Newspapers  •  N.H.S.  •  Worcestershire County Council

Encourage your MP to sign Early Day Motion #863 and Early Day Motion #864.

• Post-Covid-19 Support EDM #863.
• Researching and Supporting People with Long Covid-19 symptoms EDM #864.

Worcestershire MPs’ contact information from our website.

"I was infected with coronavirus in March, six months on I’m still unwell.". The ME Association (MEA) highlight a recent Guardian/Observer article.
We’ve got this terrific emphasis at the moment on the idea that younger people will be OK and the main reason they shouldn’t go out is because they might infect their grannies,” said Charles Shepherd, medical adviser to the ME Association which supports people with myalgic encephalomyelitis or chronic fatigue syndrome. The association has seen substantial numbers of long-Covid patients turning to it for support.
“There is a risk that if younger people catch the disease, they may not end up in hospital but they could have an illness that leaves them exhausted with post-Covid syndrome. It’s not going to happen to the majority, but there is a real risk for a significant minority,” Shepherd said.
 
#EDM863 tabled by Carol Monaghan MP
That this House is concerned that many individuals who contracted covid-19 are continuing to be affected by the virus many months after their initial infection; notes that these post-viral symptoms can include: extreme fatigue, dizziness, severe headaches and muscular pain, inability to concentrate and post-exertional malaise; further notes that exercise can amplify these symptoms; recognises that many of these symptoms are familiar to those suffering from post-viral conditions, such as myalgic encephalomyelitis; calls on the Government to make a clear statement that increasing levels of exercise may have adverse long-term health effects for those recovering from covid-19; and urges the Government to make a statement on the financial support that will be made available for people who are currently unable to return to work as a result of post-Covid-19 symptoms.
#EDM 864 tabled by Andrew Gwynne MP
That this House recognises that around 10 per cent of people experience prolonged illness after covid-19 and calls upon the Government to urgently collect and regularly report on the number of those living with long covid by following up on those with confirmed or clinical diagnoses of covid-19; notes that research into the disease should encompass both those who were and were not hospitalised to understand the true scale of the morbidity of the virus; and calls on the Government to swiftly consider and implement measures to support those living with long covid, including offering information and incentives to employers to retain their recovering staff who may or may not have confirmed cases due to limitations in testing, and ensuring that the NHS can support patients in their longer term recovery.
 
Early Day Motion: Researching and supporting people with long Covid-19 symptoms.
Dr Charles Shepherd of the ME Association (MEA) explains that a significant proportion of people with post-Covid have symptoms that are very similar to those seen in post-viral fatigue syndrome that often precedes a diagnosis of ME/CFS.  Some of these people are now being diagnosed with a post-Covid ME/CFS.
Raising this issue in parliament will help to promote research into aspects of post/long-Covid that overlap with ME/CFS. This could lead to a better understanding of how a combination of infection and the resulting immune system response can lead to debilitating activity-induced fatigue, cognitive dysfunction and symptoms caused by dysfunction of the autonomic nervous system.   
These potential research initiatives could also lead to the assessment of new forms of treatment that could be relevant to ME/CFS.
The MEA article includes a suggested template to help with your request to your MP.
 
Action for ME’s article - M.E., long Covid and getting the right support covers -

• Forward ME’s open letter addressing concerns and highlighting best practice with regards to rehabilitation of people with long Covid who are experiencing post-viral fatigue.
• Interview on BBC Points West in June with Sonya Chowdhury, AfME’s Chief Executive.
• British Medical Journal blog - Paul Garner on long haul covid-19 - Don’t try to dominate this virus, accommodate it by Paul Garner, Professor, Liverpool School of Tropical Medicine; Director, Centre for Evidence Synthesis in Global Health.
• Leicester Biomedical Research Centre’s research into the long-term health impacts of Covid-19.
• National Institute of Clinical Excellence (NICE) issued a statement, linked to its guideline for M.E., acknowledging that GET may not be appropriate for treating post-viral fatigue in patients with long Covid.
• EDM template email/letter for Early Day Motion #863 and Early Day Motion #864.

 
For further Coronavirus (Covid-19) information specifically for people affected by ME/CFS see further posts on the blog.
 
Take care, and stay safe everyone.


•  Action for ME  •  Coronavirus (COVID 19)  •  M.E. Association
•  MP  •  National Newspapers •  Parliament U.K.  •  Research

Face coverings - when to wear one, exemptions from wearing one, and how to make your own (including exemption badges to download onto your mobile and exemption cards to print).
 
Social distancing badges available for mobile or print
Action for ME explain that the UK government published optional badges that people can use to assist with maintaining social distancing from others. The badges can be used to show the carrier may have difficulties or concerns in maintaining social distancing.
There are currently three different options for people to use:

• a two-paged mobile phone option that reads “Please give me space. Be kind. Thank you for your understanding.”
• a single-page badge to print that reads “Please give me space.”
• a two-page card to print that reads “Please give me space” on one side, with “Be kind. Thank you for your understanding” on the other side.

With lockdown measures continuing to ease in many parts of the UK, these badges may increase the likelihood of others observing proper social distancing, as well as potentially helping to alleviate some anxieties that the carrier may have. If these badges are of interest to you, you can visit the page on the gov.uk website where all three documents are available to download for free.
 
The Government’s Guidance, updated on 27 August,  explains what face coverings are, their role in reducing the transmission of coronavirus (COVID-19), the settings in which they are recommended, and how they should be safely used and stored. This information is based on current scientific evidence and is subject to change.
This information relates to the use of face coverings in public spaces where social distancing is not always possible. It is important to follow all the other government advice on coronavirus (COVID-19) including staying safe outside your home.
The Guideline’s Contents -

1. What a face covering is
2. When to wear a face covering
3. When you do not need to wear a face covering
4. The reason for using face coverings
5. How to wear a face covering
6. Face coverings at work
7. Buying and selling face coverings
8. Making your own face covering
9. Maintaining and disposing of face coverings

 
Protecting yourself and others from Coronavirus - This Government Guidance page explains when to wear a face covering, exemptions from wearing one, and how to make your own face covering.  This Guidance includes pdf Documents for you to download
Face coverings: when to wear one, exemptions, and how to make your own
Exemption from face covering badge (for mobile phone)  PDF, 22.6KB, 4 pages
Exemption from face covering badge (to print)  PDF, 493KB, 2 pages
Exemption from face covering card (to print)  PDF, 34.7KB, 4 pages
 
 
For further Coronavirus (Covid-19) information specifically for people affected by ME/CFS see the previous post.
 
Take care, and stay safe everyone.

•  Action for ME
•  Coronavirus (COVID 19) 
•  Government U.K.

DecodeME Funding announcement gets a big response. We were blown away by the response when we announced funding for the DecodeME study in June. Thousands of people shared and posted on social media, and both The Times (paywall) and the Guardian ran articles.
 
The first DecodeME webinar Q&A
You can watch the full webinar, or view answers to individual questions here.
On 6 July, over 2,000 people joined our live webinar on Zoom and Facebook. Professor Chris Ponting, Dr Eliana Lacerda, Andy Devereux-Cooke and host Sonya Chowdhury answered questions such as “I registered online, what happens next?”, “How are you identifying people to take part?” and “Can those outside the UK take part?”.
 
See the DecodeME website to find out how to Get Involved in DecodeME, and read  the FAQs, The Science plus the news Updates
 
At the end of July, the ME Association’s published an in-depth interview with Chris Ponting, lead investigator for DecodeME
Meet The Scientist: Professor Chris Ponting - DecodeME. Professor Ponting took time out from his busy schedule to talk to the ME Association about the DecodeME study that seeks to understand the causes of M.E. In turn, it could help advance the discovery of effective treatments for M.E. which are so desperately needed.
 
For further background information, including information from Action for ME, The Medical Research Council, the National Institute for Health Research, the ME Association, and press articles go to our group’s previous blog ME/CFS Biomedical Partnership - Genetics Research. , and our January blog -  Biomedical Genetics Research: The ME/CFS Biomedical Partnership.

•  Research • DecodeME