Flu, Pneumonia & Covid-19 Booster - National and Local Vaccination Information.
 
Updated information from the ME Association (MEA).
Free New Winter Vaccines Leaflet: Flu, Pneumonia, and Covid-19 Booster  
October 22, 2021
Dr Shepherd reviews the Winter 2021/22 Flu, Pneumonia, and Covid-19 booster vaccines in detail, and answers questions, such as if the Flu and Covid-19 booster are free for people with ME/CFS and the pros and cons of having them.
 
Winter vaccinations: Flu, Pneumonia, & Covid-19 Booster
Introduction  -  Dr Charles Shepherd, Hon. Medical Adviser, ME Association:
To link in with the launch of the NHS flu vaccination campaign this year I have updated our flu and pneumococcal vaccine leaflet. I have included some information about COVID-19 boosters as well.

• This new free leaflet can be download here or included with any purchases made via the website shop.

The key message from this year’s flu vaccine campaign is that having been isolating ourselves from respiratory infections for almost two years our natural immunity to flu viruses has decreased significantly. So, we are likely to see a large rise in the number of people catching flu this winter.
At the same time, flu viruses and COVID-19 virus are going to be circulating in combination – which makes the chances of serious illness far more likely, especially in the elderly and people with underlying health conditions.
COVID-19 is not going to go away in the foreseeable future and it looks as though high case numbers may well persist into early 2022 before hopefully starting to decline.
 
Questions answered in this leaflet include:

1. Are people with ME/CFS entitled to have a free NHS flu vaccine if they choose to do so?
2. Is it safe to have a flu vaccine and a COVID-19 booster vaccine together?
3. Will people with ME/CFS be automatically offered a COVID-19 booster jab?
4. Should I have a COVID-19 booster if I had a bad reaction to the first or second dose?
5. Can I get a COVID-19 booster at home if I cannot get to the surgery or vaccination hub?

 
Consequently, some experts are predicting that the number of deaths from flu this winter could even reach 60,000. So, the aim of this year’s campaign is to vaccinate around 40 million people. In addition to all the usual groups, anyone over the age of 50 can now have a free NHS flu jab and children up to the age of 16 will also be offered one.
All the key points relating to the 2021/2022 flu vaccine and eligibility criteria for the COVID-19 boosters are covered in the Questions and Answers section. More detailed information on flu vaccine, as well as the pneumococcal vaccine, can be found in the second part of this information leaflet.
 
Earlier this week, Covid Booster news from the Independent -
Covid-19: Jonathan Van-Tam defends speed of booster rollout but warns of potentially ‘problematic’ Christmas
November 3, 2021 9:43 am(Updated 2:45 pm)
England’s deputy chief medical officer, Professor Jonathan Van-Tam, has defended the Government’s Covid booster programme after i analysis found the scheme is running so late it may not be completed until February.
He said the booster scheme is picking up “considerable momentum” and suggested limited NHS capacity is preventing a more rapid roll-out of the third doses.
Professor Van-Tan continued to praise England’s roll-out of the scheme and noted the pace of vaccinations had increased in recent weeks.  “Yes of course everyone wants to go faster but we are picking up really quite considerable momentum and it’s really important when you get your call please come forward and get your booster.”
He said the Government will be making it easier for people to book their booster dose by giving patients a few weeks notice to book their slots, enabling them to get the third jab as soon as possible.
 
Covid Booster announcement from the BBC-
Covid: Booster jabs to open earlier for booking in England
6 November
People living in England will be able to book their coronavirus booster jabs a month in advance under government plans to speed up their rollout.
Currently, people cannot book their top-up vaccines until six months have elapsed since their second dose.  But from Monday, those aged 50 and over, plus those most at risk, will be able to book after five months.
It means they could receive their booster on the day they reach the six-month milestone.
NHS England is introducing the change to accelerate the rate of take-up of booster jabs, to help prolong protection against the virus.
 
Being able to book ahead will save receiving text invitations after the appointment time. 
This text was received during the evening of 20 October, and the appointment was anytime from 10.00 am to 3.00 pm on 20 October !! -

Flu Vaccination Information from Worcestershire County Council.
Where can you get the flu jab in Worcestershire?
Flu vaccination will be provided by your GP via flu clinics held in your practice or your local pharmacy.  Please download the list of pharmacies in Worcestershire who are providing flu vaccinations. 
 
For Worcester City Residents
If you’re eligible for a free flu jab on the NHS, your GP practice will invite you to attend our pop-up vaccination centre at Worcester Racecourse.
Worcester City Primary Care Network (PCN)  -
Tried and tested flu protection from your local GP.  Get your free NHS flu jab at Worcester Racecourse this winter.
Worcester City PCN covers -
• Albany House Surgery; • Haresfield Surgery;  • Barbourne Health Centre; 
• Severn Valley Medical Practice - Henwick Halt Health Centre; 
• Elbury Moor Medical Centre;  • Severn Valley Medical Practice - Lyppard
• Grange Health Centre;  • Farrier House Surgery;  • Spring Gardens Group Practice;  • St Johns House Medical Centre;  • St Martin’s Gate Surgery; 
• Thorneloe Lodge Surgery
 
Current flu jab information from the Worcester City PCN website (6 November)
If you’ve been invited to get your flu jab at our centre, you do not need to book an appointment - simply walk in during our opening times.
Vaccination Centre Opening Hours
Our centre at Worcester Racecourse is currently open
from 9am-5pm (Lunch break from 12pm-12:30pm) Mon-Wed,
12pm-8pm (Lunch break from 4pm-4:30pm) Thurs, and
9am-5pm (Lunch break from 12pm-12:30pm) Friday.
Please check back here before your visit - as any changes to opening hours or planned closures will be posted below.
Scheduled Closures  -  Friday 12th November - Closed all day.

•  B.B.C.  •  Coronavirus (COVID 19)  •  Government U.K.  •  Local News   •  M.E. Association  •  N.H.S.  •  Worcester City Council 
•  Worcestershire  •  Worcestershire County Council

Myalgic encephalomyelitis (or encephalopathy)/ chronic fatigue syndrome: diagnosis and management.
NICE guideline [NG206] Published: 29 October 2021.
 
This guideline covers Diagnosing and Managing Myalgic Encephalomyelitis (or Encephalopathy)/Chronic Fatigue Syndrome (ME/CFS) in children, young people and adults.  It aims to improve awareness and understanding about ME/CFS and when to suspect it, so that people are diagnosed earlier.  It includes recommendations on diagnosis, assessment and care planning, safeguarding, access to care and managing ME/CFS and its symptoms. 
These recommendations were developed based on evidence reviewed before the COVID-19 pandemic.  We have not reviewed evidence on the effects of COVID-19, so it should not be assumed that these recommendations apply to people diagnosed with post-COVID-19 syndrome.  NICE has produced a guideline on managing the long-term effects of COVID-19.
 
Recommendations.  This guideline includes recommendations on:

• suspecting ME/CFS and diagnosis
• information and support, including advice when ME/CFS is suspected
• assessment and care and support planning
• safeguarding
• access to care and support
• managing ME/CFS
• symptom management
• flare-ups and relapse
• care for people with severe or very severe ME/CFS

 
Also from the National Institute for Health and Care Excellence -
NICE ME/CFS guideline outlines steps for better diagnosis and management
NICE has today (29 October 2021) published its updated guideline on the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS).
28 October 2021
It is estimated that there are over 250,000 people in England and Wales with ME/CFS, with about 2.4 times as many women affected as men.
The guideline covers every aspect of ME/CFS in children, young people and adults from its identification and assessment before and after diagnosis to its management, monitoring and review.
NICE continued by giving statements from -
Paul Chrisp, director of the Centre for Guidelines at NICE, Peter Barry, Consultant Clinical Advisor for NICE and chair of the guideline committee, and Baroness Finlay, Consultant in Palliative Medicine, Clinical Lead for Palliative Care for Wales, Velindre NHS Trust, and vice-chair of the guideline committee.
 
The ME Association’s (MEA) announcement -
The new NICE guideline on ME/CFS is published!
October 29, 2021
NICE have now published the final version of the new guideline.
READ NICE GUIDELINE
Dr Charles Shepherd, who was a member of the committee that prepared the new guideline, comments:
People with ME have had to live with a NICE guideline for almost 15 years that was unfit for purpose - because it recommended treatments that were either ineffective or harmful.
After a very thorough review of all the evidence - from clinical trials, experts and patients - we now have a new guideline that has reversed these recommendations and should be widely welcomed by people with ME
In particular the new guideline…..

• Recognises that ME is serious and complex medical disease
• Emphasises the need for early and accurate diagnosis – preferably within 3 months of the onset of symptoms, which normally follow an acute viral infection, and where there are important overlaps with Long Covid.
• Provides sensible guidance on activity and energy management in order to avoid symptom exacerbation and no longer recommends GET.
• Recognises the special problems faced by children and those with severe ME.

The next challenge involves educating and training all health professionals on how to diagnose and manage ME and setting up a full network of hospital-based referral services where GPs can refer for further help.  We will be issuing more detailed reaction in due course
Charles Shepherd,  Hon Medical Adviser MEA
 
Action for ME’s (AfME) Announcement -
NICE publish guideline 
October 29, 2021
Action for M.E. is delighted, as are the other members of Forward-ME, to see the long-awaited guideline on diagnosing and treating M.E be published by NICE. The publication follows a roundtable meeting held last week where Action for M.E. and other members of Forward-ME discussed the key issues.
Doctors, and people with ME* welcome the new NICE guideline on ME/CFS, which brings major improvements to the diagnosis, management, and support for people with ME.
 
The new guideline sets out a significant change in approach:

• Recommending ‘Energy Management’ techniques to avoid ‘Post-Exertional Malaise’ and exacerbation of symptoms. This approach recommends people with ME plan their physical and cognitive activities to stay within their energy limits, incorporating rest where necessary. This is also known as ‘Pacing’.
• Maintains the use of Cognitive Behavioural Therapy (CBT) only to help people cope with the distress which can accompany a long-term condition, but recognises that CBT cannot cure ME.
• Child safeguarding is significantly improved. Some parents of children with ME have been subjected to inappropriate child protection orders, and threatened with the removal of their children, in the belief that the parents had caused a ‘fabricated or induced illness’.

The recommendations on ‘Energy Management’ will also help people with Long-Covid who experience Post-Exertional Malaise (PEM), many of whom have reported that ‘Graded Exercise Therapy’ worsened their condition, and their symptoms were dismissed as anxiety
This recommendation is a clear break from the past. Previously, people with ME were offered ‘Graded Exercise Therapy’ (GET), based on a hypothesis that they were deconditioned. NICE found the evidence for this to be poor quality, and many people with ME reported that GET caused serious harm.
The new guideline on ME/CFS was due to be published in August, but NICE ‘paused’ the release following intervention from some clinicians. After a round-table with representatives from the ‘Royal Colleges’ and ME charities, NICE is now confident that the guideline can be fully implemented.
“The new NICE guideline is welcomed because it acknowledges the truth of people’s experiences, and creates a foundation for hope that future children and adults with ME will not repeat the anguish of the past.” (Sonya Chowdhury, CEO, Action for ME)
“The Guideline should drive better acceptance of ME as serious medical condition and encourage doctors to personalise care based on individual needs. It is a real opportunity for doctors to transform the care patients receive.” (Dr David Strain, Medical Advisor: Action for ME)
We have compared the 2007 versus the 2021 to share the differences and key points of the new guideline. You can read this comparison here.
NOTES:

• ME/CFS, short for ‘Myalgic Encephalomyelitis’/ ‘Chronic Fatigue Syndrome’, is a chronic disease characterised by long-term, debilitating loss of energy, often accompanied by pain. The defining symptom of ME is ‘Post-Exertional Malaise’, the disproportionate worsening of symptoms after exertion that can last days, months or years.
• People with ME often experience other symptoms such as cognitive dysfunction (known as ‘brain fog’), heart rhythm disorders and neurological effects. People with severe ME can be bed-bound for years, with hyper-sensitivity to light and sound. Some require tube-feeding.
• There is currently no cure for ME, but effective management can reduce symptoms.
• ME charities avoid the phrase ‘Chronic Fatigue Syndrome’ because ‘fatigue’ under-represents the severity of the disease and ignores many of the symptoms.
• Forward-ME represents national ME charities, co-ordinating activity to support people with ME.

 
ME Research UK’s (MERUK) Announcement -
Our response to the updated NICE guideline 
29 October 2021

• Download the new guideline here
• Read NICE’s official press release here
• Read Forward-ME’s response here

 
Today’s publication by NICE of its updated ‘Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management’ clinical guideline marks a significant step in both the acceptance of ME as a physical illness and the recognition of appropriate treatment needs of those affected by the condition.
We broadly welcome this significant update and improvement to the previous 14-year-old document, but it marks only the beginning of the transformation needed for ME to be more fully understood and, ultimately, for a cure to be found.
 
NICE’s recommendations highlight the need for research into diagnostic criteria and tests, as well as health-outcome measures, but these will not be fulfilled without researchers, healthcare professionals and funders working together to understand the causes of the illness and the effects it has on bodily systems.
Research from numerous studies informed the changes to the guideline, but it is clear that further progress depends on increased research and the availability of funding to make this work a reality. This is where ME Research UK stands ready.
Having invested over £2 million in worldwide research to date, with 10 ongoing studies, 2 newly funded projects starting this month and PhD funding available, we have funded more high-quality biomedical research into ME than any other charitable body outside the USA.
To date, the research we have funded has centred around the autonomic nervous system, the immune system, the circulatory system, the brain, genetics and mitochondrial dysfunction – all vital areas of research about the causes of ME. However, these results need to be built upon by those currently working in ME and those in other fields so that more vital breakthroughs can be made.
 
BACME’s announcement -
The new NICE Guideline on ME/CFS was published on 29th October 2021
This is BACME's response to the publication:
BACME welcomes the new NICE Guidance on ME/CFS in the hope that this will support continued progress in improving the quality of life of all people who have the complex illness ME/CFS.  Clinicians working in NHS specialist ME/CFS services strive to provide high quality care and support to people with ME/CFS while recognising that there is still a long way to go with our understanding of the condition and we do not yet have a robust evidence base on which to guide treatments and therapy approaches.
 
The new NICE guideline provides information regarding diagnosis including the importance of recognising the key symptom of Post-Exertional Malaise.  The guideline has also clarified the use of the term Graded Exercise Therapy (GET) and,in a change from the previous guideline, it has now restricted use of the term GET todescribe therapy programmes based on treating deconditioning. The symptoms of ME/CFS are not caused by deconditioning.
This guideline marks the move away from using GET programmes for treating ME/CFS.
This is a move the majority of BACME members working in NHS specialist services have already made.  BACME welcomes the fact the new NICE guideline specifies that clinicians from all disciplines delivering care to people with ME/CFS should have specialist knowledge of the condition.
BACME continues to support research which aims to provide further understanding of the underlying pathological processes that generate the symptoms experienced by people with ME/CFS in the hope this will also lead to more refined therapeutic approaches.
BACME recognises the importance of providing confident support to people with ME/CFS now and would like to see increased investment in specialist service provision to ensure equitable access for all people with ME/CFS.
BACME will use the new NICE guideline as a foundation on which to build further clinical guidance on the delivery of care to people with ME/CFS and work to ensure that the patient story is heard and embedded in the future of ME/CFS care.
 
Forward-ME Announcement -
New NICE Guidelines on ME: Forward-ME Statement & Media Support
Oct 29th 2021
NICE Publishes new Guideline on ME/CFS*, driving major improvements in care
Press Statement from Forward-ME, embargoed until publication of NICE guidelines.
Doctors, and people with ME* welcome the new NICE guideline on ME/CFS, which brings major improvements to the diagnosis, management and support for people with ME.
 
The new guideline on ME/CFS sets out a significant change in approach:

• Recommending ‘Energy Management’ techniques to avoid ‘Post-Exertional Malaise’ and exacerbation of symptoms. This approach recommends people with ME plan their physical and cognitive activities to stay within their energy limits, incorporating rest where necessary. This is also known as ‘Pacing’.
• Maintains the use of Cognitive Behavioural Therapy (CBT) only to help people cope with the distress which can accompany a long term condition, but recognises that CBT cannot cure ME.
• Child safeguarding is significantly improved. Some parents of children with ME have been subjected to inappropriate child protection orders, and threatened with the removal of their children, in the belief that the parents had caused a ‘fabricated or induced illness’.

The recommendations on ‘Energy Management’ will also help people with LongCovid who experience Post-Exertional Malaise (PEM), many of whom have reported that ‘Graded Exercise Therapy’ worsened their condition, and their symptoms were dismissed as anxiety.
This recommendation is a clear break from the past. Previously, people with ME were offered ‘Graded Exercise Therapy’ (GET), based on a hypothesis that they were deconditioned. NICE found the evidence for this to be poor quality, and many people with ME reported that GET caused serious harm.
The new guideline on ME/CFS was due to be published in August, but NICE ‘paused’ the release following intervention from some clinicians. After a round-table with representatives from the ‘Royal Colleges’ and ME charities, NICE is now confident that the guideline can be fully implemented.
 
COMMENT:  “The new NICE guideline is welcomed because it acknowledges the truth of people’s experiences, and creates a foundation for hope that in the future, children and adults with ME will receive an improved standard of care and support.” (Sonya Chowdhury, CEO, Action for ME)
“We hope and believe the Guideline will provide much needed stimulus for substantial, publicly funded biomedical research into the causes, consequences and treatment of this disease.” (Jonathan Davies, ME Research UK)
“This is a very special day for people with ME – publication of a new evidence-based NICE guideline which confirms that this is a serious and very debilitating medical disease. I welcome the emphasis on early and accurate diagnosis and the need to provide early guidance on symptom management when people are not recovering from a viral infection and a diagnosis of ME is suspected.” (Dr Charles Shepherd, Medical Advisor, ME-Association)
“The Guideline should drive better acceptance of ME as serious medical condition and encourage doctors to personalise care based on individual needs. It is a real opportunity for doctors to transform the care patients receive.” (Dr David Strain, Medical Advisor: Action for ME)
*NOTES:

• ME/CFS, short for ‘Myalgic Encephalomyelitis’/ ‘Chronic Fatigue Syndrome’, is a chronic disease characterised by long-term, debilitating loss of energy, often accompanied by pain. The defining symptom of ME is ‘Post-Exertional Malaise’, the disproportionate worsening of symptoms after exertion that can last days, months or years.
• People with ME often experience other symptoms such as cognitive dysfunction (known as ‘brain fog’), heart rhythm disorders and neurological effects. People with severe ME can be bed-bound for years, with hyper-sensitivity to light and sound. Some require tube-feeding.
• There is currently no cure for ME, but effective management can reduce symptoms.
• ME charities avoid the phrase ‘Chronic Fatigue Syndrome’ because ‘fatigue’ under-represents the severity of the disease and ignores many of the symptoms.
• Forward-ME represents national ME charities, co-ordinating activity to support people with ME.

 
Two further MERUK articles today
 
Updated NICE guideline: recommendations for research 
29 October 2021 (ME Research UK)
While the updated NICE guideline on ME/CFS is focused on the diagnosis and management of the illness, it acknowledges that there is still much to learn about it, and therefore makes some useful recommendations for research.
 
Top 10 takeaways from the updated NICE guideline
29 October 2021 (ME Research UK)
Today’s publication of the updated NICE guideline on ME/CFS marks a significant step in the acceptance of ME as a physical illness and the recognition of appropriate treatments for people affected by the condition. There are marked changes from the previous version in how people are to be diagnosed and what treatments can be offered. Here are our top ten takeaways from the new guideline.
 
 
Today’s Press:
 
BBC News: Chronic fatigue guidelines scrap ME exercise therapy advice
 
The Guardian | ME / Chronic fatigue syndrome:  ME exercise therapy guidance scrapped by Health watchdog Nice
 
INEWS:  Chronic fatigue syndrome: controversial exercise therapy removed from new treatment guidelines
 
Daily Mail:  Doctors are told NOT to prescribe exercise to patients with ME  - even though critics say it's the only therapy known to help.

•  Action for ME  •  B.B.C.  •  Forward ME  •  #MEAction  
•  M.E. Association  •  MERUK  •  National Newspapers  •  N.I.C.E.  
•  Research

Please encourage your local MP to join the next APPG (All Party Parliamentary Group) on ME meeting.
 
The ME Association announced -
APPG on ME: Annual General Meeting and the impact of COVID-19 on people with ME/CFS. 
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. 
Your MP should RSVP to carol.monaghan.mp@parliament.uk if they are hoping to attend this meeting so they can obtain the zoom link.
 
From the MEA article -
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 ME and Long Covid, the COVID-19 vaccination programme and JCVI guidance for ME patient prioritisation, and the general challenges facing the ME community at this difficult time.  
At this stage two guest speakers are confirmed who will share their expertise through short presentations and a Q&A discussion: 

1. Dr David Strain, a Senior Clinical Lecturer at the University of Exeter Medical School and Honorary Consultant in medicine for the older adult who is heavily involved in the British Medical Association COVID response team.
2. Dr Nina Muirhead, a Buckinghamshire Healthcare NHS Trust Dermatologist who is actively working to deliver better education for healthcare professionals on the topic of ME.

Background Information relating to the overlap between Long Covid and ME/CFS:
The overlap between ME/CFS and Long covid from a British Medical Association publication, including contributions from Dr David Strain, Dr Nina Muirhead, Dr Charles Shepherd and Dr Amy Small can be read here.

• Article in Pharma Technology Focus
• Dr David Strain talking on the BBC Horizon programme on Long Covid.

 
For local Covid-19 advice and guidance, see the Worcestershire County Council news items, and for Covid-19 information specifically for people affected by ME/CFS see further posts on the blog.

Take care, and stay safe everyone.

•  A.P.P.G  •  B.B.C.  •  Coronavirus (COVID 19)  •  Local News 
•  M.E. Association  •  MP   •  Parliament U.K.  •  Worcestershire County Council

Tomorrow - ME/CFS & Long Covid Radio Discussion.
BBC Radio Cornwall to host live discussion with Dr Shepherd on Monday 1st February. BBC Radio Cornwall will be hosting up to 45 minutes of discussion about ME/CFS and Long Covid with the M E Association’s medical adviser, Dr Charles Shepherd, from about 3.10pm on Monday (1st February).
LIVE LINKS (to BBC Radio Cornwall) and further information from the MEA website. 
 
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.
 
•  B.B.C.  •  Coronavirus (COVID 19)  •  M.E. Association

This week, the ME Association (MEA) and Action for ME (AfME)
give explanations on the forthcoming Covid-19 vaccinations.
 
The MEA article Covid-19 Vaccine Developments & ME/CFS from Dr Charles Shepherd, Hon. The MEA Medical Adviser, gives detailed explanations on:

• The Astra Zeneca/Oxford University Vaccine
  
• Covid-19 Vaccines and ME/CFS
• The Covid-19 Inoculation Programme
  

Plus, links to the BBC article - BBC News: Covid-19: Oxford University vaccine is highly effective | 23 November 2020, and the MEA leaflets -

• Free Leaflet on the 2020 - 2021 Flu & Pneumonia Vaccine for people with ME/CFS
• General information on vaccines as possible trigger factors for ME/CFS
• Free Leaflets on Covid-19, the restrictions, infection, Post-Covid Fatigue Syndromes & Management
• ME/CFS Disability Classification & Illness Severity Definitions
• ME/CFS Prognosis, Permanency, & Quality of Life

 
The AfME article - M.E. and Covid-19 vaccine: your questions answers some of the questions they have received relating to the Covid-19 vaccine, including -

• how safe it is for people with M.E. to have it?
• will/how will it work?
• will people with M.E. have priority access to it?
• will it be mandatory to have it?

 
 
For further information on vaccinations see our latest vaccine update plus, for news on Coronavirus (Covid-19) 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)  •  M.E. Association

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) 
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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

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