The ME Association (MEA) reported -
Parliamentary debate on Long-Covid:  What should be learned from ME/CFS?
The MEA’s announcement details the contribution from Carol Monaghan, MP - who chairs the All-Party Parliamentary Group (APPG) on M.E. - to the debate on Long Covid that was made in the House of Commons.  Hansard Transcript: Long Covid Volume 687: debated on Thursday 14 January 2021
The MEA has a full range of free leaflets relating to Covid-19, Long-Covid and ME/CFS. We have recently included a new leaflet about the Covid vaccine and ME/CFS. Leaflets can be downloaded from the website shop.
 
Action for M.E. publicised the debate -
M.E. referenced in House of Commons Long Covid debate.
A Long Covid debate was held yesterday in the House of Commons during which MPs highlighted M.E. and called for lessons to be learned from the illness when treating Long Covid patients.
We’ve summarised some key points from the debate below:

• Layla Moran MP highlighted that there are an estimated 300,000 people in the UK experiencing Long-Covid. She called for better reporting, more funding for research and recognition by employers and the welfare system.
• Carol Monaghan MP, Chair of the APPG for M.E./CFS, spoke about the similarities Long Covid has with M.E./CFS. She welcomed the caution against graded exercise therapy but noted issues with the National Institute for Health and Care Excellence (NICE) Guideline for Long Covid.
• Andrew Gwynne MP shared his experience of Long Covid and the exhaustion, dizziness and brain fog he experienced. He stated that he had to pace himself with over exertion making his symptoms worse.
• Debbie Abrahams MP said that she was hopeful that we would learn from the mistake made in how we provide care and treat people with M.E./CFS.
• Other MPs highlighted research that suggests 21% of those who get Covid will develop Long Covid. Attention was also given to children developing Long Covid and they called for greater information given to schools.
• Jo Gideon MP explained that the symptom brain fog causes a lack of clarity, inability to focus and poor concentration levels. She stated that some people find getting fresh air and going for walks help to relieve this. Action for M.E. will be writing to Ms Gideon to highlight the dangers of overexertion and that people suffering a post-viral illness must not push himself or herself to do more than they are able.
• Dr Rosena Allin-Khan MP, Shadow Health Minister, paid tribute to online support groups who are campaigning to raise awareness of Long-Covid. She said the symptoms could be severe and debilitating with many unable to return to work. Long-Covid patients are being denied referral and she called on the Government to ensure people do not miss out on the care and support they need.

In responding to the debate, the Health Minister Nadine Dorries MP, said that the Government has a five-point plan to deal with Long Covid. The NICE Guideline, which was published in December, describe common symptoms and the support they should receive. You can read about Action for M.E.’s response to this guideline on our Long Covid page. The Minister also referred to the research undertaken into the condition.
Many people with M.E./CFS will feel a sense of familiarity when reading this summary. They have experienced the injustice and neglect referenced throughout the debate without the recognition or attention that Long Covid is getting. We are pleased that some MPs reflected on the similarities with M.E./CFS and that M.E./CFS is being mentioned in the House of Commons. Nevertheless, without greater care many of those experiencing Long Covid could become even more ill if lessons are not learned from M.E./CFS.
 
Action for M.E. highlights the
NICE rapid response guideline on Long Covid. 
NICE has published its COVID-19 rapid guideline: managing the long-term effects of COVID-19.
Developed jointly by NICE, the Scottish Intercollegiate Guidelines Network and the Royal College of General Practitioners, it “makes recommendations about care in all healthcare settings for adults, children and young people who have new or ongoing symptoms 4 weeks or more after the start of acute COVID-19. It also includes advice on organising services for long COVID.”  Along with other stakeholders, Action for M.E. submitted a written response to the consultation on this guideline, which ran from Friday 23 to Tuesday 27 October. You can read more on our Long Covid page.
We are concerned to see no mention of the likelihood of developing M.E./CFS following Long Covid, despite the fact that there is clear evidence that many people with M.E./CFS developed it following viral infection.  Those who experience M.E./CFS symptoms need specific care and management, such as pacing. If those experiencing post-exertional malaise, a hallmark symptom of M.E./CFS, are treated following this guideline, they may experience a worsening of symptoms.  As this guideline claims to be a living document, we would expect there to be a further consultation and review in due course. Action for M.E. is working with another organisation to ensure patient voices are heard, and will share more about our work on this in the New Year.
 
ME Association slams lack of recognition for ME/CFS in new guideline on Long Covid. MEA stakeholder response to the NICE guideline on the management of Long COVID, which is published today.
It is surprising and disappointing to find that the draft guideline: 
(1) Has no recognition that some of the common underlying clusters of symptoms being reported in people with Long/Post COVID are exactly the same as those found in people with a post viral fatigue syndrome (PVFS) or ME/CFS. 
The key overlapping symptoms include:  activity-induced fatigue;  myalgia;  cognitive dysfunction/’brain fog’;  dysautonomia – involving orthostatic intolerance,  postural orthostatic tachycardia, postural hypotension;  headache;  problems with thermoregulation unrefreshing sleep patterns and post exertional malaise/symptom exacerbation.  
It would be very surprising if this was not the case given the fact that any type of viral infection can trigger a post viral fatigue syndrome and research carried out following previous coronavirus infections has reported that 10% or more of those infected go on to develop a PVFS or an ME/CFS like illness.
(2) Contains almost no information on the pragmatic management of the symptoms that are being commonly reported - activity and energy management in particular.  This is also very surprising when a new draft guidance from NICE on the management of ME/CFS has just been published for stakeholder consultation.  This guidance contains detailed recommendations on the sort of energy and activity management that is applicable to people with a post viral fatigue syndrome (regardless of triggering infection) and ME/CFS in both the pre diagnosis and post diagnosis stages.  
 
There have been many Long Covid media articles, including recently -
 
On 21 January, the Guardian publicised -
We're about to see a wave of long Covid. When will ministers take it seriously?
The NHS must learn from its mistakes with other post-viral conditions such as ME/CFS – more research is vital.
Long Covid is shorthand for a range of conditions. Some scientists divide them into three broad categories, others into four. Of these, one seems to ring a bell. It’s a cluster of symptoms that bear a strong similarity to myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS). This is a devastating condition that affects roughly a quarter of a million people in the UK, and is often caused, like long Covid, by viral infection.
Among the common symptoms of ME/CFS are extreme fatigue that is not relieved by rest, and “post-exertional malaise”: even mild physical or mental effort can make patients extremely unwell. Many sufferers are confined to their home or even their bed, with their working life, social life and family life truncated. There is, so far, no diagnostic test and no cure. A study published in the journal Plos One found that, of the 20 conditions it assessed, including lung cancer, stroke, MS and schizophrenia, patients with ME/CFS reported the lowest health-related quality of life.

On 15 January, the Sun reported -
Our kids were left unable to eat or walk by Long Covid and treatment was ‘torture’- but docs don’t know how to help
Doctor's plea for compassion
Paediatrician Dr Nigel Speight is an expert in child Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS).  He sees parallels between Long Covid and ME/CFS -  also a post-viral condition which is possibly triggered by the body’s immune response.
Dr Speight said: “For many years, children and adults with ME have been subjected to disbelief by the medical profession.  The same thing might be beginning to happen with Long Covid children.
“The medical profession would be sensible to accept Long Covid as a post-viral, ME-like illness, and treat it open mindedly, believe in it, and be supportive.  Doctors don’t have too much to offer these children in terms of a cure, so the least they can do is support and protect them.”
 
 
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  •  N.I.C.E. •  Parliament U.K. 

The ME Association (MEA) Free Covid-19 Vaccine Leaflet, and MEA Covid-19 Vaccine Poll.
Action for M.E. (AfME) publish Forward-ME’s Statement on the Covid-19 Vaccine for people with ME/CFS.
Plus Covid-19 news for all Worcestershire residents.
 
Free Leaflet: Covid-19 Vaccine Update Options, eligibility, safety and ME/CFS - what we know so far.  Dr Charles Shepherd, Hon. Medical Adviser, of the ME Association explains in detail the latest situations.  This three page free leaflet will be updated as the situation continues to develop. Discussions include -

• Covid-19 vaccination priority and ME/CFS
• The safety of the Covid vaccines in general
• The safety of the Covid vaccines for people with ME/CFS
• Vaccine administration practicalities
• Making a decision whether to have the vaccine

You can download the leaflet here without registering via the MEA website shop.
 
MEA Monthly Poll: Will you have the COVID-19 vaccine? 
The MEA ask if you are going to have a Covid-19 vaccine when it is made available to you.
As well as taking part in the poll, the MEA would like to hear from anyone with ME/CFS who has had a COVID-19 vaccine:

• Why did you receive the vaccine at this time?
• How did you feel after the inoculation?
• Did you experience any discomfort?
• Did you experience any side effects that might have included an exacerbation of your ME/CFS symptoms?

Please include your comments in any of the discussions on COVID-19 vaccines that are taking place on ME Association Facebook, or send them direct to the ME Association via email: Feedback@meassociation.org.uk
 
Joint charity statement on Covid-19 vaccine. 
published by Action for M.E.
Many people with M.E. have contacted Action for M.E. and other M.E. charities for information about the Covid-19 vaccine. We thought it would be helpful to have an aligned position across charities to avoid adding to any confusion and anxiety about having the vaccine.
The 25% M.E. Group, Action for M.E. and the ME Association have collaborated to agree a joint statement for Forward ME, the coalition of charities led by the Countess of Mar. You can also read it on our vaccine information page. In summary:

• We have no data from clinical trials of Covid-19 vaccines specifically relating to M.E./CFS.
• This means that vaccination must be an individual decision based on a clear understanding of the risks and benefits associated with it.
• While it is possible there might be a minor reaction to the vaccine, this will almost certainly be much less severe than catching Covid 19 itself, particularly for those severely affected.
• Potential risks associated with having the Covid-19 vaccine include exacerbation of symptoms and, for a very small number of people, an allergic reaction.

Priority group 6 as listed by the Joint Committee on Vaccination and Immunisation (JCVI) includes people with “underlying health conditions which put them at higher risk of serious disease and mortality.” The main risk groups identified by the committee include “chronic neurological disease” and we believe this includes M.E. The ME Association has written to the Chief Medical Officer for England, Prof Chris Witty, to seek confirmation.
 
The Worcestershire County Council Coronavirus (COVID-19).
information now includes links to

• Worcestershire COVID-19 dashboard
• Coronavirus (COVID-19) Vaccinations

 
Dr Kathryn Cobain, the Director for Public Health in Worcestershire’s message published on 5th January 2021, included -
Worcestershire’s infection rates are at the highest we have ever seen.  I am concerned about this level of spread, and the risk it poses to our health and the lives of our vulnerable and elderly residents. We need to act now to protect one another, prevent the virus spreading further and reduce the demand on our hospitals. 
Please now stay at home, don’t go out unless you need to, for example to buy food or collect medicines. The Government has set out the clear limitations of the lockdown and I ask you to read the restrictions and follow the rules. You can read a full explanation of all the restrictions on the government’s website;
Once again, Worcestershire County Council’s Here2Help service is available to anyone who needs support or is clinically extremely vulnerable (shielding). If you have no-one to turn to for help, our service can respond and provide help such as collecting medicines and getting shopping. You can reach the Here2Help service online 
If you are on the Government’s shielding list, you will be receiving guidance about what to do now. It is key that you socially distance, and you reduce your physical contact with others. The governments webpages are updated regularly and you can read detailed guidance on shielding their website.
 
 
For further information on the Covid-19 vaccinations see our latest Covid-19 vaccine information and, also see the flu vaccine information. generally, see.  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  •  Coronavirus (COVID 19)  •  Forward ME  •  Local News  •  M.E. Association  •  Worcestershire  •  Worcestershire County Council 

This week, the ME Association (MEA)
gives further explanations on the forthcoming Covid-19 vaccinations.
 
COVID-19 vaccine eligibility, safety and ME/CFS - what we know so far. 
 
The Joint Committee on Vaccination and Immunisation (JCVI) has produced a list of different groups of people in the order that they are going to be offered one of the new COVID-19 vaccines. Find the JCVI list HERE.
 
Dr Charles Shepherd, The MEA Medical Adviser, answers queries about where people with ME/CFS will be on the priority list, and gives detailed explanations to queries the MEA has received.
 
For further information on the Coviid-19 vaccinations see our latest Covid-19 vaccine information  and, also see our flu vaccine information. 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.

•  Coronavirus (COVID 19)  •  M.E. Association  •  N.H.S.

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

At the APPG on ME (All Parliamentary Group on ME) next week, MPs will be discussing diagnosis and management and the new draft of the NICE (National Institute for Health & Care Excellence) Guideline on ME/CFS CFS. 
 
The NICE Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management guideline is in development, with an expected publication date of 21 April 2021.
The NICE website explains that individuals can comment on the Draft Guidance.  See their website, as this must be done via their comments form, and you need to be a registered stakeholder.  Or, contact the stakeholder organisation that most closely represents your interests and pass your comments to them.  The consultation closes on 22 December 2020 at 5pm. 
 
Become involved in the response to the Draft of the NICE Guideline via national M.E. Charities.  The Worcestershire M.E. Support Group closed at the end of 2016, and the Social Group does not have membership so we are now unable to contact people with a diagnosis of M.E. in Worcestershire.  To give you an idea of the local situation, in 2003/2004 the Worcestershire ME Support Group received members’ helpful and unhelpful responses.  The information is taken from completed membership questionnaires in the year ending August 2004.

Members' helpful and unhelpful responses (pdf).

Recent articles following the publication of the Draft of the NICE Guideline -
 
The ME Association (MEA) gave their NICE Press Statement & Media Coverage of New Clinical Guideline on ME/CFS, including links to media articles, and the MEA’s Initial Reaction -
 “We are very pleased to find that NICE has addressed many of the defects in the current guideline on ME/CFS.
“In particular, we welcome the decision to no longer recommend graded exercise therapy (GET) as a treatment for ME/CFS and the decision to give heightened recognition to the many problems faced by people with severe ME/CFS.
“We do, however, have concerns about some of the diagnostic recommendations.  And there is a need to provide far more information on symptom management that is specific to ME/CFS.
“As NICE is now preparing a rapid guideline on Long COVID, a post viral syndrome that has a number of symptoms that overlap with ME/CFS, we hope that the new ME/CFS guidance on activity and energy management will also be used to help people with Long COVID.
“We will be consulting with our members on the draft and sending in a detailed stakeholder response to NICE in December.”
 
The MEA asked: What do you think about the new NICE Clinical Guideline on ME/CFS?
The MEA explained that the draft of the new NICE clinical guideline on ME/CFS is now available to read as part of the stakeholder consultation, and gave details on how to take part.
Please take your time to read the draft clinical guideline and then pass on your comments - preferably in very short statements with a reference to which part of the guideline you are commenting on.  You can do so by: 

• Completing the MEA Monthly Poll located to the right of the MEA website: What is your overall opinion of the draft NICE guideline on ME/CFS?
• Taking part in the discussions about the draft guideline on MEA Facebook,
• Contacting us by email at: feedback@meassociation.org.uk

 
Action for ME (AfME) announced - Draft NICE guideline for M.E.: have your say.
The National Institute for Health and Care Excellence (NICE) has published its draft guidance on the diagnosis, treatment and management of M.E./CFS.  Updated guidance has been long-awaited by people with M.E., advocates and charities, including Action for M.E., who have campaigned hard for much-needed changes.
We are reviewing the guideline in detail, as a priority. We are hugely encouraged to note the following, so far:

• "Do not offer people with ME/CFS any therapy based on physical activity or exercise as a treatment or cure for ME/CFS [or] any programme based on fixed incremental increases in physical activity or exercise, for example graded exercise therapy.”
• "Only offer cognitive behavioural therapy (CBT) to people with ME/CFS who would like to use it to support them in managing their symptoms of ME/CFS and to reduce the psychological distress associated with having a chronic illness. Do not offer CBT as a treatment or cure for ME/CFS."
• "Recognise that people with ME/CFS may have experienced prejudice and disbelief and feel stigmatised by people who do not understand their illness."

It is essential that the views of people with M.E. continue to shape this consultation and that the final guideline has a patient-led approach to diagnosis and management.  To make sure this happens, we will be:

• Publishing, as soon as possible, short summaries of key chapters so those less able to read long documents have a clear overview of what the draft guideline says
• sharing a survey to gather views on the guidance; we will link to this ASAP on our website and social media, and in InterAction, our membership magazine, for those not online
• using your views, along with data from our Big Survey last year, to inform our response to NICE, by their deadline of Tuesday 22 December.

Huge thanks to those who have contributed to the draft guideline, particularly people with M.E. Please do check back for updates - we will be posting our summaries and survey on our NICE guideline page as they become available.
 
Invest in ME Research issued a press release on 'NICE Draft Updated Guideline on the Diagnosis and Management of Myalgic Encephalomyelitis (ME or ME/CFS)'. Invest in ME Research stated that until the charity is able to examine the full draft guidelines document their comments relate only to the NICE press release.
 
ME Research UK (MERUK), gave a NICE Guideline Update - Press Release.
MERUK explained that the NICE draft guidance addresses the continuing debate about the best approach to the diagnosis and management of ME/CFS
NICE has today (10 November 2020) published its draft updated guideline on the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS).
It covers the identification and assessment of ME/CFS before and after diagnosis, its management, monitoring and review, information, education, and support for people with suspected or diagnosed ME/CFS and their families and carers, as well as information, education and support for health and social care professionals.
 
Last month, on 8 October, the MEA gave a Statement on the NICE clinical guideline for ME/CFS and the NICE guideline for Post/Long Covid-19.
This detailed article included sections on - Explanation of Post/Long Covid-19 and ME/CFS; NICE Clinical Guidelines on ME/CFS and Post/Long Covid-19; and Illness Management
 
Earlier, in August - ME Research UK’s article - Forward-ME call to NICE. 
Building upon previous submissions to NICE in connection with NICE’s on-going ME/CFS Guideline review which included the ME Research UK and ME Association-funded patient survey on the efficacy and effects of Graded Exercise Therapy and Cognitive Behavioural Therapy, the Forward-ME Group  have contacted NICE as follows:
As charities supporting people with M.E. we have been actively campaigning for NICE to remove the recommendation of Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT) in the guideline for M.E./CFS.
Patient surveys conducted by charities and groups including Forward-ME have repeatedly shown the harm that can be caused by these therapies, even when delivered by an M.E. Specialist. While this guideline is under review we are calling for NICE to remove the recommendation and add a health warning stating the risks associated with GET and CBT.
One of the main considerations during the guideline review is the evidence for GET in particular. It is therefore appropriate that they take this action in response to the legitimate questions and concerns that have been raised over its safety and effectiveness.
 
For future updates:  see - UK National ME/CFS/Fibromyalgia Organisations., and M.E. Research Organisations.
 
 
Take care, and stay safe everyone.

•  Action for ME  •  A.P.P.G  •  Coronavirus (COVID 19)  •  Forward ME  •  M.E. Association  •  MERUK  •  MP  •  N.I.C.E. •  Research  •  Worcestershire M.E. Social Group  •  Worcestershire M.E. Support Group 

Warnings from Worcestershire MPs and Worcestershire’s Director for Public Health.

Followed by New National Restrictions from 5 November.
The Government website gives full information on the new national restrictions, including what they mean for working from home and business closures, why they are being introduced and the financial support available.  The new measures will apply nationally for four weeks up to Wednesday 2 December.  At the end of the period, we will look to return to a regional approach, based on the latest data.
 
‘UK lockdown update: Boris Johnson announces month-long lockdown for England. This evening, Saturday 31 October, the Worcester News put together a round-up of everything you need to know.
 
Today’s announcement, followed three Worcester News articles yesterday.  On 30 October, the same day that the Worcester News published a warning from Bromsgrove and Redditch MPs  , and a plea from the Worcestershire’s Public Health director the Worcester News also announced that a second national lockdown is being considered for England next week.
 
Boris Johnson 'considering' second national lockdown for England next week.
The Worcester News article states that Prime Minister Boris Johnson is reportedly set to place England under stringent national lockdown restrictions next week.  The article gives detailed explanations on new data published on Friday.
 
Keep it local, limit your contacts and help keep Worcestershire at tier one.
Worcestershire County Council gives the plea from Dr. Kathryn Cobain, Director for Public Health in Worcestershire - “ Worcestershire does not want to face tougher restrictions. You can help prevent that, by staying local and really reducing who you mix with.  Cut down the number of contacts you have with people, keep your distance from others and remember to wash your hands and wear face coverings.  If you reduce where you go, consider who you are travelling with, who you mix with, stick to the rule of 6 and follow these rules, we will see the spread of Covid-19 reducing.  If we lower the numbers of cases, we reduce the risk of us being put into tier two measures.  Further restrictions will impact our lives, our businesses and our economy, if we want to stay at tier one, then we have to stick to the rules now more than ever. “
Also from the Worcestershire County Council -
Website: Prime Minister announces new local COVID Alert Levels 12 October 2020 (opens in a new window).
 
The Worcester News’ warning from Bromsgrove and Redditch MPs - Worcestershire MPs Sajid Javid and Rachel Maclean warn of tougher Covid restrictions.
Two county MPs have warned their constituents they could face tougher coronavirus restrictions if infection rates continue to rise.  Bromsgrove MP Sajid Javid and Redditch MP Rachel Maclean both warned residents a move to tier two restrictions may become inevitable unless action is taken.
Mr Javid tweeted: “The high COVID-19 infection rate in the Bromsgrove district means that further restrictions may be introduced.  “No one wants to see that happen. Let’s work together to keep this virus under control. Please remember to wash your hands, wear a face covering and make space.”
Mrs Maclean echoed Mr Javid, tweeting her own response, which said: “Sajid Javid is right and the same applies to Redditch.  “If the infection rate continues to rise here, then discussions over Tier 2 restrictions will become inevitable. Let’s avoid this situation by continuing to follow the rules to get that infection rate down.”
The warnings come amid fast-increasing coronavirus infection rates across Worcestershire.  Every part of the county has seen its infection rate rise this week with Bromsgrove remaining the highest.  We have previously reported how rising infection rates across Worcestershire could see the county moved into tier two "high".  In this tier, you must not meet socially with friends and family indoors in any setting unless you live with them or have formed a support bubble with them. This includes private homes, and any other indoor venues such as pubs and restaurants.
The next tier up, "very high" sees the same restriction on indoor meetings, but with a ban on mixing in most outdoor settings.  Shops, schools and workplaces will remain open even in this case.
 
Worried public health boss pleads with Worcester to follow Covid rules as infection rate surges.
The Worcester News give the plea from Worcestershire’s Public Health director Dr. Kathryn Cobain.
Concerned health bosses have asked the city to follow social distancing guidelines to stop a worrying rise in the infection rate.   Worcestershire’s Public Health director Dr. Kathryn Cobain said she was “really concerned” by the rising infection rate in Worcester as it was clear people were not socially distancing.  Latest figures show the infection rate in Worcester has risen by nearly 70 per cent in the last week and is now at 154 per 100,000 people.
“I am really concerned to see the rising infection rate in Worcester,” said Dr Cobain. “This is a clear indication that people are not social distancing and following the rules which can help prevent the virus spreading.  I am appealing to everyone in the city, it is in your hands to help us stop the virus spreading. The figures show that the virus is spreading rapidly. Everyone needs to think about how you are going about your daily lives; washing your hands regularly, and wearing face coverings where it is compulsory to do so and keeping at a social distance.
“The virus only moves around because we mix and socialise. This is how it spreads. It is really imperative that we break the chains of transmission, and continue to follow the guidance.
“You can reduce your own risk to the virus and protect those you love, by following the rules and keeping Covid-19 under control.”  Dr Cobain said a high number of cases were being transmitted within households and following the rules, such as the Rule of Six, would prevent many new cases.
Councillor Marc Bayliss, leader of Worcester City Council, said: “None of us want to see Worcester move to Tier Two.  “It will mean we all have to see less of our friends and family, and it would have an impact on our local businesses and economy.   “Please play your part in keeping us in Tier One by following the rules in every aspect of your daily lives - wash your hands regularly, wear a mask whenever it’s required and keep your distance.  “Together, we can reduce the spread of the virus.”

Further Coronavirus (Covid-19) information specifically for people affected by ME/CFS.
 
The ME Association’s (MEA) recent Covid-19 leaflets and letters are all available to download,

• 12 page Covid-19 and ME/CFS Weekly Update -
• 4 page MEA information on Reducing the risk of infection - Reducing the risk of catching Coronavirus if you have ME/CFS leaflet by Dr Charles Shepherd.
• 8 page MEA information on PVF / PVFS / ME / CFS following Covid-19 Infection - Post-viral fatigue (PVF) and Post-viral fatigue syndrome (PVFS) following Coronavirus Infection.
• MEA statement, signed by Dr Charles Shepherd, in Letter: Asserting your vulnerable status.
• 4 page MEA detailed leaflet on Benefits - Your Benefits during the Coronavirus Crisis. 
• MEA Employment Guidance: Key points on Employment, ME/CFS and the Coronavirus.  
• 24 page leaflet on Post Covid-19 Fatigue;  Post/Long Covid-19 Syndromes;  Post-Covid ME/CFS  The ME Association Guide to Post-Covid Fatigue Syndromes and Post-Covid ME/CFS.

A few of the many recent news articles concerning Long Covid-19 specifically for people affected by ME/CFS.
 
Scottish Government Issue Caution Notice for Graded Exercise Therapy in ME/CFS & Post/Long-Covid
The MEA announce that the Scottish Health Department has posted an interim statement advising caution over the suitability of Graded Exercise Therapy (GET) in treating ME/CFS and has reiterated the earlier statement from NICE cautioning against use of GET in Post/Long-Covid.
 
News & Comment: The Long-Covid Crisis and £10 million on NHS Specialist Clinics for Post-Covid Sufferers.
The MEA’s article following the Government announcement 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.
 
Long COVID: let patients help define long-lasting COVID symptoms.
The terminology for long-lasting COVID symptoms - and the definition of recovery- must incorporate patients’ perspectives.
The Nature article explains -  In deciding how to act on long COVID, researchers and policymakers must take heed of what happened in the case of myalgic encephalomyelitis, also called chronic fatigue syndrome (ME/CFS).. The condition shares some of the symptoms of long COVID, and people with ME/CFS struggled for many years to be recognized as having a serious and debilitating medical condition that needed specialized treatment and research.
 
Extract from: "The Long Hauler Tragedy: More Frightening than Halloween Nightmares" by Leonard Jason and Vernita Perkins.
"For the past 30 years, still another group has suffered from the trauma of an illness and then society’s reaction to their disability.  The illness is chronic fatigue syndrome.  These patients, who prefer the less-stigmatizing term myalgic encephalomyelitis, have a very similar predicament to many COVID long-haulers.  Because most primary care physicians are unable to detect any biological abnormalities, patients with myalgic encephalomyelitis are often considered to suffer
from depression, and health care workers often prescribe anti-depressants and a recommendation to work out a few times a week, in order to overcome their illness.  Such treatments are often effective when a person has a primary depressive symptom, but when a person with myalgic encephalomyelitis, who already suffers extreme fatigue and post-exertional malaise is encouraged to engage in formal exercise, a relapse is very likely.  With primary care professionals expecting a quick resolution of their illness, and many work associates and family members subscribing to this false rendition of their illness, it is not too surprising that almost all patients feel demoralized, not depressed."
 
Virginia Water Magazine: Why aren’t people getting better from Covid-19? With Dr Charles Shepherd.
Why aren’t people getting better from COVID-19?  The article explains that Dr Charles Shepherd Medical Adviser to the ME Association, discuss with the editor of the Virginia Water magazine.
 
Four young women talk to ‘Cosmopolitan’ about their Long Covid (and Dr Charles joins in).
The MEA cover this story from the Cosmopolitan.  Four young women talked to ‘Cosmopolitan’ this week about their battles with Long Covid - months after going down with what they thought was a mild form of the virus.
 
 
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.

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) 
•  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.