Action for ME (AfME) and the ME Association (MEA) give their immediate reactions. 
 
AfME reaction includes thoughts trom Sonya Chowdhury, AfME Chief Executive -
 
The resignation of Sajid Javid as Secretary of State -
July 06, 2022
Last night news broke that the Secretary of State for Health and Social Care Sajid Javid had resigned from his role. This has left people with M.E. feeling concerned because Mr Javid had initiated the development of a much-needed delivery plan for M.E.
 
Our Chief Executive Sonya Chowdhury who is working collaboratively with the Government shared her thoughts:  “I'm pleased to continue working with such a dedicated & personally committed team of civil servants across the Department of Health and Social Care and other organisations to drive work forward with the M.E. delivery plan and continue to make a real difference for all our community.”
 
Since the release of the written ministerial statement in May meetings have been held covering patient experience, education, training and research into cause and treatment of M.E./CFS including a roundtable that Sonya attended at the end of June.
We would like to welcome the new Secretary of State for Health and Social Care Steve Barclay and look forward to continuing this vital work alongside him at the other members of the Department.
 
 
MEA reaction includes thoughts trom Dr Charles Shepherd, Hon. MEA Medical Adviser
Sajid Javid, Secretary of State for Health and Social Care, resigns and is replaced by Stephen Barclay
July 6, 2022
 
The resignation of Sajid Javid, Secretary of State for Health and Social Security, is clearly bad news given his genuine concern and commitment to improve the care of people with ME/CFS and research into the cause and treatment of ME/CFS
 
Fortunately, the three ministerial groups covering patient experience, education and training, and research into cause and treatment of ME/CFS have all been set up and had their first meetings.  I attended the first meeting of the research group last week.
So I assume that these initiatives will all continue as planned under the new Secretary of State - the Rt Hon Stephen Barclay MP.
Dr Charles Shepherd, Hon. Medical Adviser ME Association
 
 
For further information, see our recent blog - Sajid Javid ‘Rethinking ME’ after young relative’s battles  including -  Rethinking ME – report launch
 
At the end of April our Worcestershire Social Group Blog announced - Decommissioned - ME/CFS Service at Worcestershire Acute Hospital .  If this has affected you, or you have any other concerns, inform your MP of your situation.
 
The Worcestershire M.E. Social Group’s website gives links to Social Media sites which maybe helpful to many people to discuss situations, or just to look and read other people’s postings.
 

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 See ME Awareness Week news items on M.E./Fibromyalgia Charities websites  - see 'M.E. /C.F.S. Organisations', and 'UK Research Organisations' websites links and become involved where you can.
 
International May 12th Awareness Day
This year, 2022, marks the 30th anniversary of International May 12th Awareness Day. The idea originated with Thomas Michael Hennessy, Jr., the founder of Repeal Existing Stereotypes about Chronic Immunological and Neurological Diseases (no longer active). Tom Hennessy was based in the USA but understood that it needed to be an international event; he designated the 12th of May 1992 as the International Awareness Day for the spectrum of illnesses he called Chronic Immunological and Neurological Diseases (CIND).
 
May 12 was chosen as it coincided with the birth date of Florence Nightingale, the celebrated English social reformer and statistician, and the founder of modern nursing. Nightingale became chronically ill in her mid-thirties after returning from the Crimean War; the M.E.-like illness often left her bedridden during the last 50 years of her life. You will find a more detailed account in A Short History of Myalgic Encephalomyelitis.

The ME Association ask you to -
Make a wish and join in ME Awareness Week 2022
May 8, 2022
ME Awareness Week starts tomorrow, Monday 9th May, and continues through to a fantastic finale on Sunday, 15th May. During the week, we will be asking you to make frequent use of the hashtag #JustOneWish.
It's the thirtieth anniversary of the event and – with Long Covid rampant round the world – the number of people being diagnosed with ME/CFS is growing exponentially day-by-day.
There are said to be 1.7m people in the UK alone who, months after being infected, still have symptoms of Long Covid - which in so many respects looks just like ME/CFS.
Please do something to help the ME Association meet the challenge of supporting these ever-growing numbers now and in the years ahead.
It's not too late to organise your own fundraiser to support us during ME Awareness Week. Download this little leaflet (pdf) which has lots of ideas for easy-to-arrange fundraising events.
 
Use the hashtag #JustOneWish whenever you can during the week.
The wish is what we have all been crying out for over the years - safe and effective treatments that make people with ME/CFS better.
With our links into the research community, the ME Association is well placed to generate funds that leverage new and promising biomedical research.
In the run-up to the week, we shall be highlighting lots of exciting fundraising going on all round the UK and putting up reminders about the big job of raising awareness of ME/CFS that still remains to be done.
This is your week. It's also the best time of the year to show that you are proud of your achievements and tell the world you're not yet prepared to be forgotten. Please make use of it.
Tony Britton, Fundraising and PR Manager
tony.britton@meassociation.org.uk Mob: 07946 760 811

Last week, Action for ME launched their new five-year strategy, Shaping our future together. -
Shaping our future together: our call for a national strategy for M.E.
May 05, 2022
As we approach the World ME Day on 12 May, we launch Action for M.E.’s new five-year strategy, Shaping our future together. We also have a simple-text version.  Developed in partnership with people with M.E. of all ages, carers and professionals, it sets out four ambitious outcomes which we believe will help us end the decades of ignorance, injustice and neglect faced by people with M.E.
 
Sonya Chowdhury, CEO, Action for M.E. says:
We are calling for a national strategy for M.E. led by the UK Government with a clear implementation plan and significant investment.  Action for M.E. alongside many from the M.E. community work hard behind the scenes to advocate for people with M.E. at all levels, and we hope that we will soon see a long overdue commitment to end the ignorance, injustice and neglect experienced by children and adults with M.E.  We will not stop until this happens.

Sunday 15 May
ME Research UK (MERUK) are publicising -
Blue Sunday- The Tea Party for M.E.
22 April 2022
Anna Redshaw’s ‘Blue Sunday’ Tea Party For M.E. in aid of various ME charities (including ME Research UK) will be held on Sunday 15th May 2022.
As Anna explains
On Sunday 15th May, people from all over the world will meet up online to chat and leave comments on each other’s posts. While doing so they’ll be enjoying tea and cake (or whatever their delicate digestive systems can manage) and donating what they can to M.E. charities and causes.
We are so often excluded from events because our symptoms can make it so difficult for us to leave the house, let alone spend an hour or two at an event. That’s why the Tea Party For M.E. has always had an online/virtual element running alongside any in-person tea parties.
 
The premise is simple.

• Wear something blue (pyjamas count!)
• Dig out your best cups and saucers
• Bake or buy your favourite cake
• Post a photo of you little tea party set-up to social media
• Invite your family and friends to enjoy tea and cake with you, in person or via video call
• Donate the price you’d pay in a café
• Connect with others online who are doing the same, by commenting on their photos and posts
• Feel a part of the in-person tea party as Anna uploads photos and videos from the event she host every ‘Blue Sunday’.

You can share your photos in the Blue Sunday 2022 Facebook Event or on Twitter and/or Instagram using the hashtags #TeaPartyForME2022 #BlueSunday2022
You can donate to ME Research UK directly via JustGiving.

Our local ME/CFS Service
Last month, we publicised the ME Association’s (MEA) request for news https://worcsmegroup.weebly.com/blog/me-awareness-week-2022-9-15-may about your local M/CFS Specialist Service and/or Long Covid Clinic.
Since then, we announced that the ME/CFS Service at Worcestershire Acute Hospital had been decommissioned.
 
How has this affected you?  Is there anything you would like to share, either on this website, or with the MEA?  Just get in touch 


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Today (27 April 2022), the Worcestershire ME Social Group received a copy of this notification (pdf).
 
We understand this letter was sent from Dr M Ling Consultant Physician in Infectious Diseases, Worcestershire Acute Hospitals NHS Trust, to Worcestershire GPs in April 2021.  The letter explained that “the chronic fatigue service run by infectious diseases with consultant input has been decommissioned last year at Worcestershire Acute Hospital, therefore we are unable to take patients for fibromyalgia or chronic fatigue syndrome.”
 
However, Worcestershire GPs have been informed that
“at the time of writing this there is a therapy team with occupational therapists in Worcestershire, care of Malvern Community Hospital, who can deal with treatment of chronic fatigue syndrome and many rheumatology services will have physiotherapists who can deal with fibromyalgia which can be diagnosed normally via the GP using standard criteria which could be discussed with rheumatology if there were any doubt.”
 
The letter also explained
“At the time of writing this there are services at the Barberry in Birmingham, Edgbaston, Bath and Bristol with details on the CFS website which may be able to help where diagnosis and management is needed.”

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Omicron News, Covid-19 boosters and ME/CFS.
New poll to find out how the booster vaccine affected the ME/CFS community.
 
Latest information from the ME Association (MEA).
December Poll: how did the Covid-19 booster affect you? 
December 9, 2021
 
We have a new poll to find out how the booster vaccine affected the ME/CFS community. Details are below, together with the poll for you to complete.
To clarify the different reactions to the vaccines see below:
NO REACTION - No vaccine side-effects or exacerbation of ME/CFS symptoms
MILD REACTION - Vaccine related side-effects (eg sore arm, fatigue, muscle pain, headaches, fever, chills, nausea) and/or a mild exacerbation of ME/CFS symptoms lasting for up to 48 hours after vaccination but not causing any significant or prolonged deterioration in overall health
MODERATE REACTION - Vaccine related side-effects and/or exacerbation of ME/CFS symptoms and causing a more significant deterioration in overall health for up to 5 days
SEVERE REACTION - Vaccine related side-effects and/or an exacerbation of ME/CFS symptoms causing a more severe and/or persisting deterioration in overall health 
NB: A severe reaction or unusual adverse effects, should be reported on the Yellow Card reporting system
If you have had a Covid-19 booster how did it affect you....[complete the poll on the MEA website]
 
The MEA’s statement on -
Update on Omicron (B.1.1.529), Covid-19 boosters and ME/CFS 
December 6, 2021
 
On November 25th scientists in South Africa, where cases of Covid-19 have been rising very rapidly, announced that they had found a worrying new variant of the virus that causes Covid-19. Worrying because the new variant has over 30 mutations (changes in the genetic code) on what is called the spike protein. This is the part of the virus that enables it to gain entry into human cells. The spike protein is also the target area for antibodies that are produced by Covid-19 vaccines. The new variant is also now present in over 25 countries, including the UK - where there are over 200 cases with the numbers here rising quite rapidly as well.
Scientists from around the world are trying to find out whether this new variant is going to (a) be more infectious/transmissible than the delta variant and (b) produce more serious disease We also need to know whether Covid-19 vaccines are still going to provide a high degree of protection from developing serious disease if someone catches the new variant. At the moment there is a high degree of uncertainty about all three concerns. But we should have some fairly reliable answers within the next two to three weeks.
 
In the meantime, some preliminary information indicates that omicron:

• appears to be significantly more transmissible/infectious than the current delta variant - possibly twice as infectious
• is producing milder and slightly different symptoms in younger people who catch it in South Africa. But there is very little information on severity in older or medically vulnerable people and in people who live outside South Africa
• may be more resistant to current vaccines – as some early data from the UK has found that around half of people testing positive for omicron had been double vaccinated

 
The above MEA article includes a link to -
Free New Winter Vaccines Leaflet: Flu, Pneumonia, and Covid-19 Booster , covering -
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 …
 
Worcestershire County Council gives Omicron variant news,  including information specific to Worcestershire

• Worcestershire COVID-19 situation dashboard
• Worcestershire COVID-19 vaccinations dashboard

 
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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.

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Vaccinations for people with ME/CFS.
Flu & Covid-19 Boosters - National and Local Vaccination Information.

Latest information from the ME Association (MEA).
Update on flu vaccinations and COVID-19 booster vaccinations for people with ME/CFS
September 22, 2021
 
Dr Charles Shepherd, Hon Medical Adviser, MEA, states -
Once the situation on booster vaccines for COVID-19 is absolutely clear I will be updating the current (2020) MEA information leaflet on flu vaccine and pneumococcal vaccine to also include information on the COVID-19 booster jabs.
In the meantime, almost all of the information in the current MEA leaflet on flu vaccine, which is available as a free download from the MEA website, applies to this year’s flu vaccine.
The only important addition to the eligibility criteria list is that everyone over the age of 50 can now have a free NHS flu vaccination.
The MEA information leaflet contains detailed information on how to weigh up the risks and benefits of having a flu vaccine if you have ME/CFS.
As in previous years, the type of flu vaccine given will largely depend on your age:

• The over 65s will be offered an adjuvated quadrivalent influenza vaccine (aQIV)
• Those aged 18 - 64 will be offered QIVc (cell cultured vaccine)
• Children aged 2 - 15 will be offered a live attenuated influenza vaccine (LAIV) unless this is contraindicated

The quadrivalent flu vaccines offer a fairly high degre of protection against the 4 strains of flu (two A strains and 2 B strains) that are most likely to be present this coming winter.

• Current (2020/21) MEA information leaflet on flu vaccination and ME/CFS
• Comprehensive information from the US CDC on current flu vaccines

 
The MEA’s article includes Questions and detailed Answers on flu vaccine and COVID-19 boosters:
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 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 booster jab at home if I cannot get to the surgery or vaccination hub?
 
 
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
 
Worcester News - Worcester's first mass flu-vaccination site to open at racecourse.

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The Worcestershire County Council’s recent Covid-19 announcement -
Coronavirus (COVID-19)
Update situation from the Worcestershire County Council -
Update - 30 June 2021 
Latest figures show Bromsgrove once again has the highest COVID-19 figures in the county.  Public Health in Worcestershire has been monitoring the situation. They have found cases are spreading in residents who are under 30.
Public Health advise everyone to keep following the rules, continue taking a regular rapid flow test and for anyone 18 and over, to get vaccinated.
Councillor Karen May, Leader of Bromsgrove District Council and cabinet member with responsibility for Health and Wellbeing said:
“We have come such a long way over the last year. Bromsgrove has worked hard to reduce the spread off the virus and keep everyone safe. We mustn’t let our hard work go to waste.  The numbers are rising in people who have not been vaccinated. Please don’t put off booking yours.  It's the best way to keep your family and friends safe.  I know, together we can do this, and get the numbers down."
The Worcestershire County Council also gives National Restrictions Update information following the Prime Minister’s announcement on 14 June.
 
The Worcestershire County Council’s Worcestershire COVID-19 situation dashboard -
The 7 day rate per 100,000 - given on the morning of 4 July:
Bromsgrove - 143
Worcester - 133
Malvern Hills - 119
Wychavon - 85
Wyre Forest - 81
Redditch - 79
 
The Worcestershire County Council Covid-19 website also gives Advice and Guidance on -
Get a test;  Self-isolation;  Vaccinations;  Traveling abroad;  Report cases;  NHS Test and Trace and using the App;  Test and trace support payment;  What is a contact?;  Face coverings;  Social distancing;  Advice for the clinically extremely vulnerable;  Need support?;  Help for businesses;  Easy read;  Information in other languages .
 
Plus our county’s two dashboards -  Worcestershire COVID-19 vaccinations dashboard , and Worcestershire COVID-19 situation dashboard
 
The ME Association’s (MEA) Covid-19 Free Resources.
MEA ME/CFS & COVID-19 Free Resources
During the unprecedented Covid-19/Coronavirus pandemic, we have ensured that people with ME/CFS - and those who continue to experience symptoms following infection - are kept informed of the latest guidance and related information.
All the leaflets and template letters relating to the Covid vaccination are free to download.  We periodically review and update them when new information emerges or the situation regarding the national restrictions are changed.  Please note these leaflets are downloads. You can read them on-screen and save to your computer, phone or other device and can attach them to any email you might need to send. But you will need access to a printer if you wish them printed.
 
See the MEA website for downloadable guidance leaflets and letter templates -
 
Covid-19 & ME/CFS Guidance:
Long Covid & ME/CFS: Information & Management May 2021
Covid-19 & ME/CFS Vaccine Update May 2021
Covid-19 & ME/CFS Reducing the Risk of Infection - November 2020
 
Letter Templates: Covid-19 & ME/CFS
Covid-19 & ME/CFS Clinical Vulnerability Adults
Covid-19 & ME/CFS Clinical Vulnerability Students
ME Association Covid Vaccine Eligibility Template Letter (V5) (19 March 2021)
MEA Letter to CCGs (England) & Health Boards (Wales) - 19 March 2021
 
Take care, and stay safe everyone.


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JCVI Priority Vaccination List (Joint Committee on Vaccination and Immunisation).

Change.org petition: Please sign the Petition - "Specify ME/CFS on the list of neurological conditions under group 6 for UK Covid19 vaccine".
 
From the petition page:
ME (or CFS as some still call it) is a chronic neurological condition that affects around 250,000 people across the UK, 75% are too unwell to work or study, 25% are completely housebound or bedbound. It has a worse quality of life score than other common conditions like cancer, but only gets 5% of the research funding that similar conditions like MS receives.  There are no effective treatments available, and patients are left trying to manage symptoms often with little medical input.
When the JCVI published the 9 priority groups for the Covid19 vaccine rollout in the UK in late 2020, chronic neurological conditions were listed under group 6.  However, when the small print was published, ME was not specifically listed, and therefore when ME patients checked with their GPs that they were on the list, many (including me) were told “the computer system has not flagged you as someone who is vulnerable and in group 6”. The ME Association, Action for ME, and ME Action UK have been clear that there is good evidence that people with ME are vulnerable to Covid19 and should be included in group 6 (some of which is listed below).
 
The ME Association has been writing to the JCVI for many weeks, only to be told that it is a matter of clinical judgement for GPs as to whether people with ME are added to the list for vaccination.  This leaves it up to the decisions of individual doctors as to whether people with ME are vaccinated, creating a postcode lottery where only those who have the capacity to write to their doctors, and who have supportive doctors who have the time to do the research about the risks that Covid19 poses to ME patients, are able to get the vaccine under group 6.  Although some ME patients have been successful in gaining their GPs support, many have not been and are worried that they will need to continue to isolate for the best part of another year until the vaccine is rolled out across the healthy population.  With the publication of the ONS statistics showing people with disabilities are much more likely to die from Covid19 this week, it seems even more farcical that people with such a disabling illness should be left off the list.
 
Therefore, with groups 5 & 6 being offered the vaccine in the coming days, it is essential that the JCVI do the following as soon as possible:
1.  Apologise to ME/CFS patients for the distress they have caused during the past few weeks.
2. Immediately amend the guidance so that ME/CFS is listed under the list of chronic neurological conditions in group 6.
3. Speak to the NHS IT department to ensure that the coding on the computer system reflects this change so that people with ME/CFS are flagged as being in group 6.
 
The medical grounds for this are listed below (from Dr Shepherd of the ME Association):
https://meassociation.org.uk/2021/02/latest-covid-19-me-cfs-and-the-jcvi-priority-vaccination-list/
1. Infections are the main trigger factor for ME/CFS.
This is well recognised, and I can supply supportive research evidence if required.
We also know from previous published research that the SARS outbreak in Toronto back in 2003 resulted in cases of an ME/CFS-like illness:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3071317/
2. New infections are a very common cause of relapse or exacerbation of ME/CFS
Again, this is well recognised by doctors who are involved in managing people with ME/CFS.
Chu et al (2019) carried out an epidemiological study into the outcome of ME/CFS and reported that infections are the commonest factor for having a deleterious impact on the course of ME/CFS:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6370741/
The fact that new infections can cause a significant exacerbation or relapse of ME/CFS is also referred to in both the CMO Working Group Report on ME/CFS and in section 1.6.4 of the new (draft) NICE clinical guideline on ME/CFS:  CMO Working Group Report:
https://meassociation.org.uk/…/uploads/CMO-Report-2002.pdf
New NICE guideline (draft):
https://www.nice.org.uk/…/gid…/documents/draft-guideline
3. Evidence from people with ME/CFS who contracted COVID-19 infections.
The ME Association has been collecting patient evidence since April last year from people with ME/CFS who have suffered a significant and/or permanent relapse of their ME/CFS symptoms after catching Covid-19.  We can supply anonymised examples if required.
4. It has been estimated that around 10% of people who catch Covid-19 develop Long Covid - a post-viral condition that is very similar to, and in some cases the same, as ME/CFS

Further recent information. 
 
ME Association:
LATEST: COVID-19, ME/CFS and the JCVI Priority Vaccination List. 
This MEA blog includes a MEA template letter for you to download, amend and send to your GP (v2).
The blog explains that the MEA had received a reply from the JCVI (Joint Committee on Vaccination and Immunisation) to the two emails that were sent in January and February. The MEA had sought clarification as to whether people with ME/CFS are included in Group 6 of the JCVI priority list for vaccination against COVID 19.
The reply from the JCVI is available in the blog - followed by Dr Charles Shepherd’s  response which includes some of the recent feedback received from people with ME/CFS who have now managed to obtain a priority vaccination or are awaiting one.
 
The JCVI are not currently willing to state that ME/CFS should be included as a specific disease in Group 6 as an underlying health condition and neurological disease.
However, they have repeated an important statement from the ‘green book’ and clearly said it only contains examples of neurological diseases and that they are not exhaustive.
More importantly, the JCVI has emphasised the green book statement which says that GPs should (not can) apply their clinical judgement when it comes to patients who have underlying health conditions that are likely to be exacerbated by COVID-19 infection.
As ME/CFS is very likely to be exacerbated by COVID-19 infection, this means that doctors cannot simply state that they are unable to place someone with ME/CFS into Group 6 because the JCVI does not allow them to do so.
 
 ME Association:
Covid Vaccinations and ME/CFS: Community Feedback!
The MEA feedback blog includes  -
1. Summary of Covid vaccination feedback.
2. MEA Trustees describe their vaccine experiences.
3. Feedback from people re: ME/CFS priority vaccination. 
 
The COVID-19 immunisation programme
Extracts from of “COVID-19 - SARS-CoV-2” sections in The Green Book Chapter 14a. ('Coronavirus (COVID-19) vaccination information for public health professionals'.)
 
The COVID-19 immunisation programme
12 February 2021
Provisional recommendations for the use of the vaccine
The objectives of the COVID-19 immunisation programme is to protect those who are at highest risk from serious illness or death. The Joint Committee of Vaccination and Immunisation (JCVI) have set out a prioritisation for persons at risk. JCVI ranked the eligible groups according to risk, largely based on prevention of COVID-19-specific mortality.
Evidence from the UK indicates that the risk of poorer outcomes from COVID-19 infection increases dramatically with age in both healthy adults and in adults with underlying health conditions. Those over the age of 65 years have by far the highest risk, and the risk increases with age. Residents in care homes for older adults have been disproportionately affected by the COVID-19 pandemic. Table 2 sets out JCVI advice on priority groups for COVID-19 vaccination. Table 3 sets out JCVI advice on clinical risk groups for COVID-19 vaccination.
 
 
Covid-19 News from the Worcestershire County Council.
 
Extra testing to monitor and suppress spread of COVID-19 variant.  Extensive surveillance of COVID-19 has identified a small number of cases of the COVID-19 variant first discovered in South Africa, in localities across England, including the WR3 area of Worcestershire that cannot be traced back to international travel.
Working in partnership with NHS Test and Trace, every person living in the affected area over the age of 18 is strongly encouraged to take a PCR COVID-19 test as soon as possible, even if they are not showing symptoms. Testing will take place from midday Saturday 6 February and continue for two weeks.  Find out if your address is in the affected area.
 
 
For local Coronavirus (Covid-19) vaccination information see the Worcestershire County Council news items,  and for information specifically for people affected by ME/CFS see further posts on the blog.   
 
Take care, and stay safe everyone.

•  Coronavirus (COVID 19)  •  Government U.K. •  Local News  •  M.E. Association  •  N.H.S.  •  N.I.C.E. •  Worcestershire
•  Worcestershire County Council  •  Worcestershire M.E. Social Group

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.

Information on COVID-19 vaccination for eligible adults.
A person eligible to book a free NHS coronavirus (Covid-19) vaccine received a letter (below) plus ‘A Guide for Older Adults’ leaflet.
The Government’s COVID-19 vaccination Guidance is available online, plus the leaflet is downloadable.
For further Government information on the COVID-19 vaccination please visit: www.nhs.uk/covidvaccination.

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 

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.