Coronavirus (COVID-19/Cv19) - 13 November 2020 New information inside - The ME Association
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13 November 2020
New information inside
Coronavirus
(COVID-19/Cv19)
and ME/CFS
Coronavirus (COVID-19/Cv19) and ME/CFS
13TH NOVEMBER 2020 UPDATE
13th NOVEMBER 2020 UPDATE
The Covid situation continues to evolve rapidly. England
is currently back in lockdown and Scotland, Northern
Ireland, and Wales, are each observing their own
restriction measures. Local alert systems are also in place
in some areas and many people are advised to stay at
home and to work from home - with the notable exception
of those attending schools, colleges, and universities
where exceptions are applicable.
The death toll from Covid has
now passed 50,000 in the UK
which is more than for any other
country in Europe. The current
measures are designed to help
put a brake on the spread of
the virus and, while vaccines
are now in full development and
national inoculation programmes
may be available in early 2021,
the situation remains a significant
concern.
Most people with ME/CFS should be regarded as clinically
vulnerable and will need to stringently follow the latest
Government advice. However, there will be those who
have other serious medical conditions and may be
considered clinically extremely vulnerable and, in England
at least, will have been advised to adopt shielding
measures.
The ME Association will be updating this leaflet as soon
as it can, and will continue to share the latest news and
information on its website and social media platforms. If
you are in any doubt about what you should be doing,
especially if you develop symptoms that you suspect
might be Covid-19, please consult the Government
websites:
England: https://www.gov.uk/coronavirus
Northern Ireland: https://tinyurl.com/yby7h7h4
Scotland: https://tinyurl.com/vth7xtd
Wales: https://gov.wales/coronavirus
2 MEASSOCIATION.ORG.UK
Coronavirus (COVID-19/Cv19) and ME/CFS
THE CURRENT SITUATION
Having reached the peak So the whole country is going
of infection in mid April, the to have to live with COVID-19
number of people being for the foreseeable future. And
admitted to hospital with this means adjusting the way
COVID-19, along with the we all live according to the
number of deaths, is now level of individual risk we face.
gradually falling. We are all on a steep learning
Hopefully, this trend will curve here and at a national
continue for the next few policy level there is going to
to work, or choose to return
weeks and months until be quite a lot of trial and error to work, this has to be on the
we reach a very low level before we get this right. basis of people being able
of residual infection in the to travel to work safely. And
community. all aspects of the workplace
EASING THE must be safe in relation to
However, we are then going
LOCKDOWN hygiene and social distancing
to enter a position where a
measures.
low but hopefully manageable
level of infection persists, The second item of news, Employers have a clear duty
possibly with periodic spikes in which follows on from the under Health and Safety
certain parts of the country. progressive fall in numbers, legislation to provide a safe
This situation will almost is the way in which a very working environment and the
certainly remain for the rest of cautious easing of Lockdown Health and Safety Executive
2020, and probably well into has been announced. has opened a hotline for
2021 – until a vaccine becomes people to call if they are
The various items of relaxation
available, or the disease goes not happy about what an
announced by the Prime
away, or largely disappears. employer is proposing or doing:
Minister mean that changes in
0300 790 6787, Monday to
Although vaccine relation to exercise, education
Friday 8.30am to 10pm.
development research is and employment are moving
faster in England than If you have concerns about
proceeding at a very rapid
elsewhere in the UK. But none working arrangements you
rate in several centres, I don’t
of these changes are going should discuss them with your
think we are going to see a
to have any significant affect trade union or professional
safe and effective vaccine
on most people with ME/CFS - body representative. The MEA
being made available for
unless someone is planning to has produced more detailed
public use until 2021. And while
return to work or school. guidance on employment –
the chances of success appear
see our COVID-19 Resources.
to be fairly good, there is no As far as education in England
guarantee that we will have a is concerned, the key point Dr Charles Shepherd
vaccine. here in relation to ME/CFS is Hon Medical Adviser, MEA
that any return to school is not
compulsory - the government
has simply issued guidance
on returning to school for
certain groups of children. My
understanding is that nobody is
going to be in trouble, or even
fined, if they choose to continue
to keep their children at home.
For people with ME/CFS who
may now be asked to return
MEASSOCIATION.ORG.UK 3
Coronavirus (COVID-19/Cv19) and ME/CFS
WHAT THIS LEAFLET COVERS
This update contains all the
ME CONNECT CONTENTS
key information and guidance
that has emerged since the 4 Controlling the spread
last full MEA website summary We’re here to help 0344 576 5326 of the virus
on Cv19 that was published on Do you need to talk? 5 Hand and Respiratory
Tuesday 31st March. The MEA ME Connect is the telephone helpline
service of the ME Association. Hygiene
website summary contains It provides information and support for
people with ME and those
comprehensive information
who live with or care for them.
ME Connect provides a safe and
5 Vaccine Development
understanding environment for people
on all aspects of Cv19 as it with ME so that they know they are
being heard and understood.
5 Testing for the virus
applies to ME/CFS. Go to:
6
“Thank
you for being there,
What to do if you have
https://tinyurl.com/y9zb3o9j. you provide a wonderful
service”
symptoms suggestive of
Individual sections cover: “MEConnect gave me
information, reassurance
ME Connect is a member of the
and the tools to
cope” coronavirus infection
n The Coronavirus (Cv-19) –
Helplines Partnership
which promotes high standards.
6 Shopping – Food and
What it is, testing, treatment, CALL 0344 576 5326
10am-12noon, 2pm-4pm, 7pm-9pm Medicines
vaccine development etc. every day of the year
7 Employment
n What are the symptoms of
Calls cost the same as other standard landline numbers (starting 01 or 02).
If you have a call package for your landline or mobile phone then
calls will normally come out of your inclusive minutes.
the coronavirus infection? 7 Government Guidance:
We will continue to keep The vulnerable
n What should you do if you you up to date on all new and extremely
have a new onset of cold or developments via MEA social vulnerable
flu-like symptoms? media and answer any
8 ME/CFS Research
n Who is most at risk of questions, where we can, on
catching this infection? MEA Facebook. 8 Progress on the new
NICE clinical guideline
n Why people with ME/ Please look after yourself and
on ME/CFS
CFS should qualify as being stay safe. ME Connect – the
vulnerable MEA telephone helpline – is 8 Can pets transmit the
open morning, afternoon and infection?
n Why people with ME/CFS
evening every day of the week
are not considered extremely 9 Possible forms of
if you want to speak to someone
vulnerable treatment
for information or support.
n How can you prevent https://tinyurl.com/ydbfncvk 9 What should people
yourself from getting infected? with ME/CFS do if they
Dr Charles Shepherd
Can pets transmit the catch Cv19?
Hon Medical Adviser
infection? The ME Association. 9 Face Masks
n What contact can you still Regular Updates: 11 What should previously
have with other people? Social healthy people do
mobility, distancing, self- We have made this update
if they experience
isolation and shielding (and all future updates) into a
symptoms suggestive of
downloadable free leaflet. It
n What help is there for carers? post infectious fatigue
can also be found in the website
and/or ME/CFS?
n Education and Employment shop along with a ‘to whom it
may concern’ letter which might 11 Hospital based referral
n Shopping, food and be helpful when arguing your services for ME/CFS
medicine delivery case for additional support and 11 Further information
n Foreign Travel help as a vulnerable person. Our
welfare rights adviser has written 11 ME Association working
n Hospital and other medical arrangements
a new leaflet that covers all the
appointments
main DWP benefit changes that
n Further information relate to COVID-19.
4 MEASSOCIATION.ORG.UK
Coronavirus (COVID-19/Cv19) and ME/CFS
CONTROLLING
WHAT THIS LEAFLET
THE COVERS
SPREAD OF THE VIRUS
There are now consistent action is still needed to deal
indications from the daily with employers who are not
government statistics on new taking measures that help
cases and deaths, and from to ensure employees are
the bed occupancy figures not working closer than six
all round the UK (which are feet (two metres) apart and
falling) that we are well past are receiving appropriate
the peak and approaching a protective equipment.
situation where there is a very New research from America
low level of infection out in the suggests that to be perfectly
community. safe the space between
As a result there will continue n As of Wednesday 17th June people should be more than
to be a progressive easing 2020, a total of 298,136 people six feet (two metres). On a
of all lockdown measures - have tested positive for the personal basis, I am now trying
certainly for some healthy virus and 41,969 people in to keep my distance to nearer
groups in the population, and the UK who tested positive for twelve feet (four metres)
for certain occupations and coronavirus (COVID-19) have wherever possible.
businesses. died. News item:
However, for people with ME/ Source: UK Government: The Independent.ie: ‘Two
CFS, social distancing and https://tinyurl.com/sphwg2m metres not enough’ when
isolation is going to have Although the situation has social distancing: https://
to remain for many months been very serious in France, tinyurl.com/wqffujl
to come - until a vaccine Germany, Italy and parts of the Academic paper in Journal of
is developed (probable), a USA, the numbers of new cases American Medical Association:
successful antiviral treatment are all now falling to very low https://tinyurl.com/qnu3cjd
has been found (possible) or levels.
what is called herd immunity Turbulent Gas Clouds and
People who are vulnerable, Respiratory Pathogen Emissions:
has occurred (ie a large
including anyone with ME/ Potential Implications for
number of people are now
CFS, should try to stay at home Reducing Transmission of
immune to the infection) and
except for: COVID-19.
the virus can no longer spread
effectively. n Shopping for essential items
such as food and medicines
n A walk or some form of daily
exercise
n Medical appointments
n Travel to work/school if you
are able to do so
You should also ensure that you
are at least six feet (2 metres)
apart from anyone outside of
your household.
Source: NHS Choices:
https://tinyurl.com/vccz7ux
Judging from feedback to
the MEA Facebook page
MEASSOCIATION.ORG.UK 5
Coronavirus (COVID-19/Cv19) and ME/CFS
WHAT THIS
HAND ANDLEAFLET
RESPIRATORY
COVERS
HYGIENE TESTING FOR THE VIRUS
n As we explain in the main Following a very unsatisfactory
website summary, the virus initial approach to testing, it
can remain active on many does now appear that testing
different types of surface. If for evidence of current viral
you are going supermarket infection (the antigen test) is
shopping for example, one being rapidly increased with a
high risk item is that large Government aim of performing
numbers of people are 100,000 tests per day. This should
touching trolley handles. Some mean that health and other key
supermarkets are wiping down workers will know if they have the
handles before issuing them to virus. They will also know when
The two key points on reducing customers, but it is still worth they are no longer infective and
the risk of catching the virus using your own alcohol-based can go back to work.
remain the same: sanitizer to wipe the handle
However, problems do remain
n Avoid touching any surface down before use.
in finding an antibody test that
that other people have been
is sufficiently reliable for the
touching. Always wash your
hands, fingers and wrists in
VACCINE purpose of identifying people
soap and hot water for at least DEVELOPMENT who have had the infection
in the past and one that is not
20 seconds after touching
producing false positive results.
any surfaces that could have
Scientists in Oxford and Anyone who has symptoms that
the virus on them. Soap and
Imperial College London have are suggestive of COVID-19
water is more effective than
made really rapid progress in
sanitizers. This is because the should now be able to have a
developing a vaccine and
virus is protected by a thin test.
clinical trials have now started.
outer layer of fat. Soap causes
The Oxford trial will take 1000
this fat layer to disintegrate
people and split them into GENERAL
and the virus then decays.
two equal groups - one group MANAGEMENT
n Do not touch your face, being given the vaccine, the
eyes or mouth with your fingers other group receiving another
– especially when you have vaccine. They will then be As many people are no longer
been touching surfaces that followed up and asked to report going outside in the sunshine,
could be infected. if they develop any symptoms or only doing so for short
suggestive of Cv19 and tested periods, the risk of vitamin D
In addition to the very detailed
for the virus. If the Cv19 vaccine deficiency is increasing. So new
guidance on hand and
group are not catching the advice is for everyone to take
respiratory hygiene in section
infection and the other group a daily 10 microgram vitamin D
E of our main website summary
are this will be a good indicator supplement.
here are two more tips on this
of efficacy. The researchers will People with ME/CFS are already
vital aspect of preventing you
also want to make sure that the at risk of vitamin D deficiency -
catching Cv19:
vaccine is safe. so this is sound advice. Vitamin
n Careful hand washing is, not
All this will take time - at least D is also essential for bone and
surprisingly, leading to some
six months. The results will then muscle health. We have an MEA
people having dry cracked skin
have to be analysed and information leaflet covering
– which is another risk factor
manufacture of the vaccine vitamin D symptoms, prevention
as the virus can hide in small
started up. So a vaccine is not and treatment of deficiency.
skin cracks. Use a good hand
an immediate solution.
moisturizer after washing and Helpful links: https://tinyurl.
drying hands to keep the skin This is a helpful news link: com/ybjmfubh and https://
hydrated. https://tinyurl.com/ya8fuf69 tinyurl.com/ycoqmf5l
6 MEASSOCIATION.ORG.UK
Coronavirus (COVID-19/Cv19) and ME/CFS
WHAT TO DO IF YOU SHOPPING - FOOD AND MEDICINES
HAVE SYMPTOMS
SUGGESTIVE OF
CORONAVIRUS for many people, home delivery
and supermarket access remains
The advice here remains the same problematic.
in that people with symptoms, It’s worth noting that there
or suspected symptoms, should are now a huge number of
contact NHS 111 for further community volunteer groups
advice: being set up all around the
NHS Coronavirus: Advice for country who can provide
everyone: https://tinyurl.com/ volunteers to do shopping,
vccz7ux collect prescriptions etc. – we
now have a very active one
n There is now a specific NHS
with over 100 volunteers in the
111 Coronavirus online service
Cotswold village where I live.
should you develop symptoms. Concerns about the delivery of
This helps the NHS monitor food and medicine to people Some local councils are also
occurrences and should help who are confined to their homes coordinating aid and some local
you to determine if you are likely – the vulnerable and extremely shops who don’t normally deliver
to have the coronavirus: https:// vulnerable – are still a major are now offering delivery.
tinyurl.com/y74arddj cause for concern. ME Charities and MPs send letter
Do not go to your GP surgery or The ME Association, along with to supermarkets asking for more
local hospital. Your GP can speak our charity colleagues in Forward support for people with M.E:
to you on the phone. If symptoms ME, have sent a letter to the https://tinyurl.com/v5g4ap3
worsen, especially if you become Government and the main Jo Moss – who has severe M.E. –
short of breath, have rapid supermarkets, to express our has written a fantastic blog with
breathing, or are drowsy, or deep concerns and requesting tips for those who are struggling
develop a very high temperature, urgent action to help those with supermarket home
you must get in contact again most in need. We are awaiting a deliveries: https://tinyurl.com/
with either your GP or NHS 111 – response. ya88stnj
as hospital admission may then
be necessary. Some people are now able If you are having problems
to access home delivery slots persuading a supermarket that
Finally, there are further reports to
or click and collect slots via ME/CFS is a vulnerable illness
indicate that loss or taste of smell
supermarkets online - especially and deserving of home delivery
is an important symptom of Cv19
if you let the supermarket know etc. you can make use of the
and can be one of the initial signs
you are vulnerable, or extremely MEA statement and a new ‘to
of infection. Some people are, not
vulnerable, or are a regular user whom it may concern letter’ on
surprisingly, losing several kgs of
of the service and pay monthly vulnerability.
weight during the active infection
for a delivery option.
stage. More information:
Most supermarkets are now
A more detailed summary of Which magazine on supermarket
opening specifically for
symptoms can be found in section shopping: https://tinyurl.com/
vulnerable people, and those
B of the main summary. yc73rds3
that care or support them,
during special times each week. Comprehensive list of community
Check supermarket websites for support groups: https://tinyurl.
more information. If you need com/yc5uuj4p
someone to shop for you, these
This website covers offering
might offer a good option.
and requesting help within
So, there are signs that things a neighbourhood: https://
might be improving. However, nextdoor.co.uk
MEASSOCIATION.ORG.UK 7
Coronavirus (COVID-19/Cv19) and ME/CFS
GOVERNMENT
WHAT THIS LEAFLET
GUIDANCE:
COVERSTHE VULNERABLE
AND EXTREMELY VULNERABLE
The two lists produced by One of the categories in the
the government have, extremely vulnerable list is:
not surprisingly, caused some
“People on immunosuppression
confusion. therapies sufficient to
VULNERABLE significantly increase risk of
infection”.
As we have made clear all
along in our main website It could be worth speaking
summaries, people with ME/ to your GP to see if they think
CFS should be regarded given your personal situation,
as vulnerable in relation to you are at increased risk of
coronavirus infection. infection.
This is because there is a strong NICE reference: Postural
risk that they will suffer a hypotension in adults:
significant exacerbation of ME/ the extremely vulnerable list, fludrocortisone: summary of
CFS symptoms, or a relapse, if you will be at very high-risk of possible benefits and harms:
they catch the virus. developing serious respiratory https://tinyurl.com/ydfuz4ev
complications from the
n If you are having problems
persuading a medical
infection. EMPLOYMENT
professional, employer or If this is the case, then register
supermarket that ME/CFS as an extremely vulnerable We are receiving an increasing
is a vulnerable illness and person by visiting this number of queries relating to
deserving of additional Government website: https:// employment issues. As a result,
consideration you can make tinyurl.com/v473jbj. You will we have produced a separate
use of the MEA statement be entitled to additional help and more detailed guide to
and the new ‘to whom it may and support – including home employment, coronavirus and
concern letter’ on vulnerability. delivery of shopping and ME/CFS.
medications if you need them. This can be accessed here:
Anyone with a chronic
neurological condition, or You should also be practicing The ME Association: Key Points
another condition on the shielding measures and on Employment, ME/CFS and the
vulnerable list, or because of avoiding all contact with other Coronavirus: https://tinyurl.com/
their age, should be practicing people for 12 weeks from the ya3zhvuj
stringent social distancing date you receive your letter
from NHS England (if you didn’t If you are having problems in
measures:
receive a letter by 30 March persuading an employer that
Govt. Guidance on social ME/CFS is a vulnerable illness
you are advised to contact
distancing measures and you can make use of the MEA
your GP surgery).
vulnerable list: https://tinyurl. statement and a new ‘to
com/t6ssvqa Govt. Guidance on shielding whom it may concern letter’ on
and extremely vulnerable list: vulnerability.
EXTREMELY VULNERABLE
https://tinyurl.com/qv2xjzu
ME/CFS is not included as
Please note that if you are
a specific condition in the
taking the drug fludrocortisone
second Government list of
for Postural Orthostatic
people who are regarded as
Tachycardia Syndrome (PoTS),
being extremely vulnerable.
which helps to increase blood
However, if you have another volume, this drug can cause
medical condition that is on immune system depression.
8 MEASSOCIATION.ORG.UK
Coronavirus (COVID-19/Cv19) and ME/CFS
WHAT
ME/CFS
THIS
RESEARCH
LEAFLET COVERS
could be a simple and reliable
way of tracking the amount
of infection in the general
population.
FDA announcement on
FMTs: Fecal Microbiota for
Transplantation: Safety Alert
- Regarding Additional Safety
Protections Pertaining to SARS-
Research that is being funded CoV-2 and COVID-19: https:// CAN PETS TRANSMIT
through the MEA Ramsay tinyurl.com/yd7kprr6 THE INFECTION?
Research Fund is continuing
We are in contact with all
where possible. The view from the veterinary
the research groups that we
I am chairing or attending experts is that humans are
fund where patient contact
regular virtual meetings for the unlikely to catch the virus from
is involved and are discussing
ME Biobank and the ME/CFS pets and pets cannot catch the
how this affects the progress of
Research Collaborative virus from humans.
their research.
The ME Biobank is continuing However, this is another area
of scientific uncertainty and to
to operate at the Royal Free PROGRESS ON THE err on the side of caution, you
Hospital, but no patient contact NEW NICE CLINICAL should avoid touching cats
is being made in relation to new
blood sample collection.
GUIDELINE ON ME/CFS and dogs that belong to other
people (because the virus can
The MEA is funding a new persist on animal fur), and avoid
NICE has decided to halt all
research study involving your own pets licking you!
further work on the guideline
cardiopulmonary exercise
because many of the clinical There is also a report of tigers
testing at the University of
staff on the committee (myself in Bronx Zoo in America having
Leicester - although it remains
included) are heavily involved the infection – possibly from a
uncertain when this can
with our duties in relation to zookeeper.
commence as it will involve
coronavirus. However, work Government Guidance: Advice
patient recruitment. More
information can be found in the is now resuming with working for people with animals: https://
MEA website May news archive. groups on specific topics tinyurl.com/u4apd75
meeting in June and the full
A new warning from the FDA committee meeting again in
about the potential dangers July. DID YOU KNOW?
associated with coronavirus
and faecal microbiome My personal view is that we may NHS 111
transplants (FMTs) illustrates how not be able to meet the current
IS NOW AVAILABLE ONLINE
this infection is going to have target of publishing the new
AND OVER 30,000 PEOPLE USE
an impact on research activity NICE guideline in December 2020
IT EVERY DAY!
relating to ME/CFS, especially and a more realistic date might
be Spring 2021.
any studies that require patient
involvement.
111.NHS.UK
NICE has also been contacted
Some interesting new research about guidance on how people
from Australia, which links to with serious pre-existing health
the presence of the virus in problems should be managed
human faeces, is indicating if they have to be admitted
that monitoring the level of to hospital with coronavirus
coronavirus in sewage works infection.
MEASSOCIATION.ORG.UK 9
Coronavirus (COVID-19/Cv19) and ME/CFS
POSSIBLE FORMS WHAT SHOULD PEOPLE WITH ME/
OF TREATMENT CFS DO IF THEY CATCH CV19?
As noted in the full website
summary, several experimental FACE MASKS
treatments are now being
assessed and clinical trials
There is a great deal of debate
completed examining three
in the media about the value
drugs.
of wearing disposable or home-
The UK Recovery Trial is made face masks.
currently evaluating HIV drugs
Most doctors agree that these sort
lopinavir/ritonavir as well as
Not surprisingly, we are now of non medical face masks can
anti-inflammatory steroid
starting to receive occasional provide some protection when
dexamethasone and anti-
reports from people with ME/ it comes to the person wearing
malarial hydroxychloroquine.
CFS who are making a slow the mask and the spread of any
“Said to be the largest of its respiratory infection they may
recovery and/or experiencing
kind in the world, the study have. But these sort of cheap
a significant exacerbation of
is being conducted by the masks provide very little protection
their ME/CFS symptoms after
University of Oxford at more to the person wearing the mask
catching Cv19.
than 130 NHS hospitals across when it comes to prevention
the country.” People with ME/CFS have been of viral droplets from someone
describing their experiences of else who is coughing or sneezing
Large-scale trial for
COVID-19 infection in several entering their mouth or nose. They
coronavirus drugs launches
in UK: https://tinyurl.com/ discussions on MEA Facebook. may even be counter-productive
y9h88hp9 On a more positive note, I in that they become moist and
am not currently aware of trap viral particles during the day.
Preliminary results indicate anyone with ME/CFS who has
that dexamethasone could People also end up touching their
been admitted to hospital with
be a real breakthrough in face to fiddle with the mask and
severe respiratory problems.
the treatment of COVID-19 don’t properly clean them before
for people in hospital who In our current state of they are used again.
have severe respiratory knowledge we don’t know
In current circumstances NHS staff
complications: with any certainty whether
need all the high grade medical
people with ME/CFS are more
The Guardian: Coronavirus face and eye masks and visors
susceptible to catching Cv19 that do provide a high level of
survivors’ blood plasma could
as a result of their immune personal protection from the
be used to fight infection:
system dysfunction, which virus. The situation may therefore
https://tinyurl.com/r7m2mdy
includes low level immune change when these sort of masks
system activation, and whether can be purchased by the public.
they are more vulnerable to
developing the more serious To help prevent the spread of
respiratory complications. infection many shops are now
asking people to wear a face
What is becoming increasingly mask and wearing a mask
clear is that people with ME/ on public
CFS will probably develop an transport in
exacerbation of symptoms, England is now
or a relapse of symptoms – compulsory
because a new and significant - unless
infective episode is a common you have
cause of exacerbation/relapse a medical
in ME/CFS. exemption.
10 MEASSOCIATION.ORG.UKCoronavirus (COVID-19/Cv19) and ME/CFS
WHAT SHOULD
THIS LEAFLET
PREVIOUSLY
COVERS HEALTHY PEOPLE DO IF
THEY EXPERIENCE SYMPTOMS SUGGESTIVE OF POST
INFECTIOUS FATIGUE AND/OR ME/CFS?
I am aware, through personal develop prolonged fatigue, or sleep or increased sleep
and media reports, of of an a fatigue syndrome following (hypersomnia),
increasing number of previously Cv19 infection, e.g:
n Returning to the GP if new
healthy people who are now
“One possible route here symptoms develop, or a fever
experiencing what could be a
would be to make use of or chest symptoms continue, or
post-infection fatigue syndrome get worse.
following Cv19 infection. the baseline information
on people who already Health and care professionals
This is not surprising given often carry on working when
that fatigue is often a very have clinical data and
they are ill but in this case, they
prominent symptom of this blood samples stored
(and everyone else) should
infection and there are some at the UK Biobank but avoid any pressure to return to
good epidemiological studies did not have PVFS or work until they feel that they
(i.e. the Dubbo research that ME/CFS at the time of are fully capable of doing so.
Ian Hickie et al. carried out in
enrolment and then go Two further items of interest
Australia) to show that post-
on to develop prolonged involve research from South
infection fatigue can affect
around 10% or people in this fatigue, or a fatigue Africa which indicates that
sort of situation. syndrome following Cv19 having had a BCG vaccination
infection” in the past (to protect from
Dubbo reference: Post-infective TB) may help to reduce the
and chronic fatigue syndromes Dr Shepherd was interviewed severity of the Cv19 infection.
precipitated by viral and non- for The New Scientist recently:
Could the coronavirus trigger And there is growing evidence
viral pathogens: prospective
post-viral fatigue syndrome?: to indicate that older people
cohort study: https://tinyurl.
https://tinyurl.com/yc4jwqyv who go on to develop
com/y8l44shb
more serious respiratory
As to how research might be As far as management is complications after a few
carried out to investigate what concerned, the guidance is days may be experiencing an
is happening to people after fairly similar when it comes overactive immune system/
the acute infection is over, this to people with ME/CFS who inflammatory response to the
was discussed at the recent experience an exacerbation or virus. This could be linked to
ME Biobank Steering Group relapse, and previously healthy the way in which they may
meeting (as there are plenty of people who are not getting have been in contact with
epidemiologists at the London better after 7 to 10 days and other coronavirus infections
School of Hygiene and Tropical go on to develop symptoms in the past, have developed
Medicine – some of whom are suggestive of a post viral antibodies, and are now
looking at Cv19) and at the last fatigue syndrome. producing an overactive
CMRC Board meeting – where The basics being: immune system response.
Prof Chris Ponting is taking a
special interest. n Old fashioned
convalescence involving very
One possible route here would careful pacing of physical and
be to make use of the baseline mental activities,
information on people who
n Attention to good nutrition –
already have clinical data and
as some people with Cv19 are
blood samples stored at the
experiencing weight loss,
UK Biobank but did not have
PVFS or ME/CFS at the time of n Good sleep management in
enrollment and then go on to relation to either unrefreshing
MEASSOCIATION.ORG.UK 11Coronavirus (COVID-19/Cv19) and ME/CFS
WHAT
HOSPITAL
THISBASED
LEAFLET
REFERRAL
COVERSSERVICES FOR ME/CFS
Hospital staff across many appointments. So, it looks as
disciplines have been retrained though these ME/CFS services
to work in other wards, will be operating with very
including the care of Cv19 limited capacity for at least the
patients, and this applies to next three months.
those working in the ME/CFS
If you have an urgent query
specialist clinics.
it is still worth contacting
As a result, some ME/ the service to see if there
CFS referral services have is someone available who
reduced their level of service can provide information or
or cancelled outpatient guidance over the phone.
FURTHER INFORMATION
If you are keen to keep up with the latest It continues to be an incredibly busy time for
developments, it’s worth watching the daily your charity and we’re doing all we can to help
Downing Street News Conference that takes address the many concerns that are reaching
place at 5pm each day and is broadcast live us. Responses may be delayed, but we will get
on the BBC news channel. back to you as soon as we possibly can.
We will also continue to do our very best to Please take care. Stay at home and stay safe.
keep you informed through MEA website and
social media announcements.
ME ASSOCIATION WORKING PVF AND PVFS
ARRANGEMENTS
We have a new MEA information leaflet
covering the diagnosis and management of
We issued a statement to provide information
Cv19 PVF and PVFS. This is now available as a
on all aspects of our work and the services
free website download.
we provide. Almost all key activities are
continuing as normal – the main change
being that we have now closed Head Office
in Buckingham and office staff are now
working from home.
The main impact here is that we will not be
able to send out any paper literature, purple
books, or merchandise from the office for the
foreseeable future. ME Connect – the MEA
telephone helpline – remains operational,
seven days a week, for information and
support: https://tinyurl.com/ydbfncvk
ME Association statement:
The ME Association and Coronavirus: New
working arrangements: https://tinyurl.com/
y9w9evr3
12 MEASSOCIATION.ORG.UKYou can also read
