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Vaccinations for people with ME/CFS (Dec 2021)

15/12/2021

 
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
 
•  Coronavirus (COVID 19)  •  M.E. Association  •  Worcestershire  •  Worcestershire County Council

Vaccinations for people with ME/CFS (Updated)

6/11/2021

 
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 !! -
Picture
Screenprint from text message. 20 October 2021
Flu Vaccination Information from Worcestershire County Council.
Where can you get the flu jab in Worcestershire?
Flu vaccination will be provided by your GP via flu clinics held in your practice or your local pharmacy.  Please download the list of pharmacies in Worcestershire who are providing flu vaccinations. 
 
For Worcester City Residents
If you’re eligible for a free flu jab on the NHS, your GP practice will invite you to attend our pop-up vaccination centre at Worcester Racecourse.
Worcester City Primary Care Network (PCN)  -
Tried and tested flu protection from your local GP.  Get your free NHS flu jab at Worcester Racecourse this winter.
Worcester City PCN covers -
• Albany House Surgery; • Haresfield Surgery;  • Barbourne Health Centre; 
• Severn Valley Medical Practice - Henwick Halt Health Centre; 
• Elbury Moor Medical Centre;  • Severn Valley Medical Practice - Lyppard
• Grange Health Centre;  • Farrier House Surgery;  • Spring Gardens Group Practice;  • St Johns House Medical Centre;  • St Martin’s Gate Surgery; 
• Thorneloe Lodge Surgery
 
Current flu jab information from the Worcester City PCN website (6 November)
If you’ve been invited to get your flu jab at our centre, you do not need to book an appointment - simply walk in during our opening times.
Vaccination Centre Opening Hours
Our centre at Worcester Racecourse is currently open
from 9am-5pm (Lunch break from 12pm-12:30pm) Mon-Wed,
12pm-8pm (Lunch break from 4pm-4:30pm) Thurs, and
9am-5pm (Lunch break from 12pm-12:30pm) Friday.
Please check back here before your visit - as any changes to opening hours or planned closures will be posted below.
Scheduled Closures  -  Friday 12th November - Closed all day.

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

Flu & Covid-19 Boosters - National and Local Vaccination Information. Sept 2021.

27/9/2021

 
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.

•  Coronavirus (COVID 19) 
•  Local News 
•  M.E. Association
•  N.H.S.
•  Worcestershire
•  Worcestershire County Council

Covid-19 Situation Locally and Nationally - 18 July 2021.

18/7/2021

 
Grab a Jab Vaccination Clinics during July in Bromsgrove, Malvern and Worcester.
The Worcestershire County Council’s recent Covid-19 announcement .-
Grab a jab clinics now open during July 2021
If you are 18 or over you can grab a Jab at the following sites this July.  No need to book, simply turn up to get your vaccination.
•    Artrix, Bromsgrove, B60 1GN: Monday to Saturday 8.00am to 7.30pm and Sunday 8.00am to 1.30pm. (AstraZeneca and Pfizer vaccinations available)
•    Three Counties Showground, Malvern, WR13 6NW: Monday to Friday 8.00am to 5.00pm or Saturday 8.00am to 1.30pm (AstraZeneca and Moderna vaccinations available)
•    St Peter’s Baptist Church, Worcester, WR5 3TZ: Monday to Saturday 8.00am to 7.00pm (AstraZeneca and Moderna vaccinations available)

The Bromsgrove Advertiser -
HEALTH Secretary and Bromsgrove MP Sajid Javid is self-isolating after testing positive for Covid-19.  In a statement posted on Twitter, Mr Javid said he was awaiting the result of a full PCR test and had only mild symptoms.
“This morning I tested positive for Covid. I’m waiting for my PCR result, but thankfully I have had my jabs and symptoms are mild,” he said.
“Please make sure you come forward for your vaccine if you haven’t already.”
The Health Secretary’s announcement comes as the Government prepares to go ahead with the final lifting of lockdown restrictions in England on Monday, despite the misgivings of some scientists.

Number of Worcestershire Covid Cases currently rising rapidly.
The Worcestershire County Council’s Worcestershire COVID-19 situation dashboard gives the 7 day rate per 100,000.  Information below shows changes during the last fortnight.
7 day rate per 100,000 given on the morning of 4 July
(see our previous blog)   
Bromsgrove 143
Malvern Hills 119
Redditch 79
Worcester 133
Wychavon 85
Wyre Forest 81
7 day rate per 100,000 given this morning 18 July
Bromsgrove 447
Malvern Hills 276
Redditch 300
Worcester 590
Wychavon 283
Wyre Forest 321
The Worcestershire County Council also announces -
National restrictions update - 12 July 2021
The Prime Minister has confirmed we will be moving to Step 4 of the roadmap to end COVID-19 restrictions in England.
The decision to open up has been made in a balanced and careful way, with the Prime Minister being clear that we will need to follow the new guidance to help keep ourselves and each other safe while we learn to live with the virus.
Legal restrictions will end on Monday 19 July 2021
More information on the announcement can be found on the Government website (opens in a new window).  As Step 3 restrictions will remain in place until 19 July, you should continue to follow the guidance on what you can and cannot do from GOV.UK (opens in a new window).
Please see the blog post of 4 July for more Covid-19 Guidance from Worcestershire County Council and ME Association.

Covid-19 Situation Locally and Nationally - July 2021

4/7/2021

 
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.


•  Benefits  •  Coronavirus (COVID 19)  •  Local News  •  M.E. Association  •  N.H.S.  •  Worcestershire  •  Worcestershire County Council

APPG on ME to discuss impact of Covid-19 on people with ME/CFS -19 April

10/4/2021

 
Please encourage your local MP to join the next APPG (All Party Parliamentary Group) on ME meeting.
 
The ME Association announced -
APPG on ME: Annual General Meeting and the impact of COVID-19 on people with ME/CFS. 
The Annual General Meeting of the All-Party Parliamentary Group on Myalgic Encephalomyelitis (ME) will take place on Monday 19 April between 11:00 - 12:00. 
Your MP should RSVP to carol.monaghan.mp@parliament.uk if they are hoping to attend this meeting so they can obtain the zoom link.
 
From the MEA article -
In addition to AGM business, this meeting will focus on the impact of the COVID-19 pandemic on the ME community. 
Points of discussion will include the clinical and pathological overlaps between ME and Long Covid, the COVID-19 vaccination programme and JCVI guidance for ME patient prioritisation, and the general challenges facing the ME community at this difficult time.  
At this stage two guest speakers are confirmed who will share their expertise through short presentations and a Q&A discussion: 
  1. Dr David Strain, a Senior Clinical Lecturer at the University of Exeter Medical School and Honorary Consultant in medicine for the older adult who is heavily involved in the British Medical Association COVID response team.
  2. Dr Nina Muirhead, a Buckinghamshire Healthcare NHS Trust Dermatologist who is actively working to deliver better education for healthcare professionals on the topic of ME.
Background Information relating to the overlap between Long Covid and ME/CFS:
The overlap between ME/CFS and Long covid from a British Medical Association publication, including contributions from Dr David Strain, Dr Nina Muirhead, Dr Charles Shepherd and Dr Amy Small can be read here.
  • Article in Pharma Technology Focus
  • Dr David Strain talking on the BBC Horizon programme on Long Covid.
 
For local Covid-19 advice and guidance, see the Worcestershire County Council news items, and for Covid-19 information specifically for people affected by ME/CFS see further posts on the blog.

Take care, and stay safe everyone.

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

Priority Covid-19 Vaccinations for Worcestershire's Carers (UPDATED)

3/3/2021

 
Worcestershire Association of Carers updated their notification on 2nd March.
Covid vaccination for carers.  Unpaid carers have begun to be called forward for their first jab of the Covid vaccine.
Anyone in Worcestershire already identified as a carer in their GP records, or in receipt of Carer's Allowance, or those already known to be carers will be automatically invited for a vaccination in the next few weeks. All carers currently on Worcestershire Association of Carers register will be contacted by the Worcestershire County Council offering a priority booking for a Covid-19 vaccination.
However, with an estimated 63,000+ carers in Worcestershire, there are still many people at risk of missing out because their carer status is unknown to services.  If you are a carer, please complete the short form HERE to ensure you are offered the priority Covid vaccination.
 
The quarterly Worcestershire Association of Carers magazines "The magazine for the county’s Carers" are available to download from their website. 
 
Worcestershire County Council Coronavirus (COVID-19) information for unpaid carers. Information for people who are caring, unpaid, for friends or family during the coronavirus outbreak.
 
For further Covid-19 Vaccinations, and ME/CFS news. 
 
For Coronavirus (Covid-19) local 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.

•  Carers  •  Coronavirus (COVID 19)  •  Local News  
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Priority Covid-19 Vaccinations for Worcestershire's Carers

28/2/2021

 
Post updated on later post.

Members of the Worcestershire Association of Carers are being contacted by the Worcestershire County Council offering a priority booking for a Covid-19 vaccination.
 
Worcestershire Association of Carers Covid-19 Announcement. 
Carers added to Covid vaccine priority list.
New Covid vaccination advice from the Joint Committee on Vaccination and Immunisation (JCVI) published last week (30th December 2020) has revised its recommendations to include unpaid carers in the vaccine priority list.
It now recommends unpaid carers who get Carers Allowance or who are the main carer of an elderly or disabled person whose welfare may be at risk if the carer falls ill should be prioritised alongside people with underlying health conditions. This means unpaid carers are now in Priority Group Six.
Receiving the Covid vaccine:
You will not need to ring your GP surgery to arrange having your vaccine - the NHS will contact you when it's your turn.
If you have not already registered with your GP as a carer, we suggest giving us a call on 0300 012 4272.  We can advise you on the best steps to take to ensure you are on the priority list.
 
The quarterly Worcestershire Association of Carers magazine "The magazine for the county’s Carers" is available to download from their website. 
 
Worcestershire County Council Coronavirus (COVID-19) information for unpaid carers.
 
For further Covid-19 Vaccinations, and ME/CFS news. 
 
For Coronavirus (Covid-19) local 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.

•  Carers  •  Coronavirus (COVID 19)  •  Local News  
•  Worcestershire County Council  •  Worcestershire M.E. Social Group



Covid-19 Vaccinations, and ME/CFS

14/2/2021

 
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

Covid-19 Vaccine & ME/CFS, plus local Covid-19 News

21/1/2021

 
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.
NHS coronavirus (Covid-19) vaccine letter for older adults (text)
File Size: 14 kb
File Type: docx
Download File

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 
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