MAY BE REPOSTED
Version 3 of the latest updated information on swine flu in a Question and
Answer format can be found on the home page of the MEA website:
http://www.meassoci ation.org. uk >> quick links section on the home page
Swine flu and ME/CFS - latest advice (27 July) from the ME Association
SWINE FLU AND ME/CFS: QUESTIONS AND ANSWERS (Version 3)
The ME Association continues to receive a wide variety of questions about
swine flu (influenza A virus H1N1) and how the pandemic might affect people
The numbers affected in the UK are now rising quite rapidly - the current
official figure is around 100,000 cases - but the true total figure is
almost certainly much higher.
The most common age group to be affected is children under the age of 14.
Figures are much lower in the over 65s - suggesting a degree of resistance
The situation regarding management is constantly changing - so this is our
current advice and information on the most common questions we are
We will be updating this website posting at regular intervals to take
account of the latest official medical advice from the Dept of Health, as
well as feedback received from people with ME/CFS.
1 Are people with ME/CFS more at risk of catching swine flu?
Overall, the answer is probably no. However, if you belong to a sub-group
who easily pick up infections, especially coughs, colds and flu-like
infections, then the risk of catching swine flu may well be slightly higher
than for normal healthy people.
2 Can children and adolescents catch swine flu?
Yes, and the symptom pattern appears to be similar to that seen in adults
(see question 8). There are now some serious cases involving children -
whose immune systems obviously have no natural resistance to this infection.
Consequently, the use of antiviral medication (ieTamiflu) will also need to
be considered in this age group. Infected children should obviously remain
off school/college but the Dept of Health is not normally recommending the
closure of schools where cases exist. However, some experts are now
questioning whether schools and colleges, especially in high risk areas,
should remain closed after the summer holidays - as they are an important
route of transmission in this age group.
3 How can I avoid catching swine flu?
In very simple terms, the more people you come in contact with the higher
the risk - especially people who are coughing or sneezing. The highly
contagious time for people who have the virus is around the time when they
have first have symptoms. So try to keep away from crowded public areas and
public transport, including aeroplanes - if it's not really necessary. This
is particularly important if you have an 'at risk' condition (see point 7)
as well. Simple avoidance measures and hand washing will help to reduce the
risk but you cannot eliminate risk completely. Coughing and sneezing also
spreads viral droplets onto hard surfaces such as door handles, keyboards
and phones - where they can remain infective for up to 24 hours. This is
another important form of transmission. Wearing a cheap face mask isn't
thought to be a very effective form of protection!
People in high risk groups (see point 7), especially those with
respiratory/ lung disease, must make sure that their symptoms are under good
control, and that any chest infection is promptly treated. And stop smoking
if you do!
4 How can I build up my resistance to catching swine flu?
The media is full of advice from 'health experts' about how to 'boost your
immune system' using vitamin C, Echinacea and all kinds of expensive
supplements. However, there is no sound scientific evidence to show that
these products make any real difference.
5 How dangerous is swine flu?
At present, the virus appears to be of similar virulence to any other type
of flu virus - but it may be causing more severe respiratory symptoms in
some people. So the vast majority of people are experiencing a relatively
mild illness. If the virus starts to mutate (ie swap or change its genetic
make up) and different strains emerge then the situation could become more
serious quite quickly. As with any other flu like virus, there are going to
be occasional cases where perfectly healthy people develop severe
complications (such as pneumonia). People with 'at risk illnesses' - such as
asthma or cancer - are more likely to develop potentially serious
complications. This is the reality of any infectious disease.
6 Are people with ME/CFS more at risk of developing complications from
Overall, there is no evidence to indicate that people with ME/CFS are more
at risk from developing the serious complications that can occasionally
occur with swine flu. However, those who are more severely affected,
especially anyone who is bed-bound or prone to chest infections, may be more
at risk from respiratory complications. And as many people with ME/CFS
experience a relapse or exacerbation in symptoms whenever they catch a viral
infection, an episode of swine flu is highly likely to make ME/CFS worse.
7 Does it make any difference if you have other medical conditions?
Yes, it can make a significant difference. Because swine flu is an
infection that predominantly affects the respiratory tract/lungs, those with
any form of respiratory disease - asthma, chronic bronchitis and
COPD/chronic obstructive pulmonary disease in particular - are more at risk
from developing potentially serious respiratory complications. So if you
already have a chronic lung disease, it's important to make sure that you
are controlling symptoms with medication as well as possible.
Other illnesses and situations that increase the likelihood of serious
* liver and kidney disease
* chronic neurological disease that affects respiratory function
* heart disease
* immune system deficiency caused by cancer, leukaemia, and drugs such
* pregnancy, - especially during the third trimester - where the
immune system is naturally suppressed
* young children under 5
* the over 65s - although people over the age of 60 may have some
partial immunity to the virus
Although a variety of immune system abnormalities can occur in ME/CFS, these
are not usually consistent with the sort of immune system deficiency that
makes people much more susceptible to this type of infection.
8 What are the main symptoms of swine flu?
At present, swine flu tends to present with an acute onset with some or all
of these typical flu like symptoms:
* a sudden onset of fever - 38 degrees centigrade or over (but not
* cough (can be dry) or shortness of breath
* sore throat
* sneezing and/or runny nose
* aching muscles
* loss of appetite
But this picture may change if the virus mutates and new strains emerge.
You can do a very helpful symptom check on www.nhs.uk < http://www.nhs. uk/ > .
9 How can you tell the difference between ME/CFS flu-like symptoms and
This may not always be easy as some of the symptoms clearly overlap. But
swine flu should always be considered where there is a new or sudden onset
of flu-like symptoms - especially if this includes sneezing and cold-like
symptoms, respiratory symptoms or a cough, and a definite fever. The key
advice here is to trust your instinct - if something different with flu-like
symptoms is clearly happening seek medical advice.
It's worth noting that a variety of plant pollens can cause sneezing,
coughing and other hay fever type symptoms at this time of year - which may
add to the confusion over diagnosis.
10 Can swine flu trigger ME/CFS in previously healthy people?
As infections are a very common trigger for ME/CFS, and we know that
ordinary flu can trigger ME/CFS, the answer is almost certainly yes. The
MEA contributed to a very helpful article in The Guardian on this issue::
http://www.guardian .co.uk/world/ 2009/jul/ 21/swine- flu-recovery- tips
11 What should I do if I have new flu-like symptoms that do not seem like
For the vast majority of people an episode of swine flu will not be that all
that different from any other type of flu. This can be normally treated at
home with rest, plenty of fluids and painkillers (paracetamol or ibuprofen).
Swine flu symptoms tend to last for no more than a week.
THE NATIONAL PANDEMIC FLU SERVICE
The Department of Health has now set up a specific National Pandemic Flu
Service telephone helpline and website to give diagnostic advice and take
some of the pressure off GPs.
Telephone helpline: 0800 1 513 100 (treatment) and 0800 1 513 513
Please note that this service is not manned by health professionals - a
decision on whether to issue Tamiflu will be made on your answers to a check
list of symptoms. If you are not happy with the advice being given you
should speak to your GP.
NPFS website: www.direct.gov. uk/pandemicflu
You can also obtain information by:
* calling your GP - who should be able to give a diagnosis over the
phone rather than you visiting the surgery. This is because visits to a
surgery by people with the infection will help to spread the infection to
vulnerable people in the waiting rooms who have illnesses such as cancer
* calling NHS Direct on 0845 4647 (England)
* calling NHS 24 on 08454 24 24 24 (Scotland)
* calling NHS Direct Wales on 0845 4647
* calling 0800 0514 142 (in Northern Ireland)
If symptoms are serious (ie breathing difficulties; drowsiness) or
deteriorating, and you are unable to obtain advice from the above, you
should phone the accident and emergency department at your local hospital.
12 What are Tamiflu and Relenza?
Tamiflu (oseltamivir) is an effective antiviral drug that works by reducing
the replication of the virus. Tamiflu will :
* relieve symptoms
* slightly shorten the duration of symptoms and infectivity
* reduce the chances of serious complications such as pneumonia
If you have an illness such as asthma that puts you at increased risk of
developing complications from swine flu it's important to start taking
Tamiflu as soon as possible. To be effective the drug really needs to be
used within 48 hours of the onset of symptoms. Antiviral drugs are being
given out by doctors in relation to individual clinical circumstances - they
are not necessary in every case. And they are not normally being given as a
prophylactic/ preventative measure to contacts of cases - unless there are
Tamiflu side-effects can include nausea, which appears to be the most
common. Nausea can be reduced by taking the drug with or immediately after
food, and drinking some water. Other possible side-effects include
vomiting, abdominal pain, dyspepsia, diarrhoea, headache, fatigue, insomnia,
dizziness, conjunctivitis, epistaxis (nose bleed) and a rash. Very rare but
more serious side-effects include hepatitis, Stevens-Johnson syndrome, toxic
epidermal necrolysis and neurospychiatric disorders. The drug should not be
taken by people with kidney disease and not normally during pregnancy (where
safety remains uncertain). It can be given to children. A liquid
preparation is available for children and people who cannot take tablets...
Relenza (zanamivir) is another antiviral drug. This drug is inhaled and is
suitable for use in pregnancy. However, it can cause bronchospasm (airways
spasm), urticaria and skin rashes. It needs to be used with caution in
anyone with asthma and lung disease.
13 Should people with ME/CFS take Tamiflu?
The simple answer at present is probably yes - but this is clearly a
decision that has to be made in relation to individual circumstances.
Tamiflu appears to be a generally safe and effective treatment with a low
level of side-effects. So Tamiflu is a drug that should be seriously
considered when a person with ME/CFS develops swine flu, or has symptoms
suggestive of swine flu - the main reason for use being that the swine flu
infection could well cause an exacerbation of ME/CFS.
14 How do I get Tamiflu?
Your GP can issue a prescription.
Or you obtain a diagnosis from the National Pandemic Flu Service - a member
of staff will issue you with a reference number. This is then taken -
preferably by someone who is healthy - to a pharmacy, or other collection
centre, where the drug will be dispensed.
15 When will a swine flu vaccine be available?
Now that the genetic make-up of the virus has been identified, scientists
are rapidly developing a vaccine that will be based on a killed virus. The
latest information we have is that this new vaccine may be available from
September or October onwards once it is licensed for use - probably without
all the normal very strict pre-marketing checks for safety. Once the
vaccine is ready for use (two doses will be required), and we know more
about it, we will issue further information in relation to its use in
people with ME/CFS. This will take account of the fact that ordinary flu
vaccine can sometimes cause an exacerbation or relapse of ME/CFS symptoms.
At the start of mass vaccination, top priority will obviously be given to
people with 'at risk' health conditions.
16 What is the situation regarding foreign travel?
If you are planning to travel abroad, check with the Foreign and
Commonwealth Office travel advice at: www.fco.gov. uk/travel or call 0845 850
2829. Do not travel abroad if you have symptoms suggestive of swine flu.
Make sure your travel insurance is up to date and you have an up to date
European Health Insurance Card (this used to be an E111) - which can be
obtained through an on-line application and should be back within a week.
This card will entitle you to the same standard of state health care that
you would normally receive under the NHS in the UK. If you cancel a trip
due to having swine flu, you should be covered by your travel insurance
policy - although some policies do have an exclusion clause relating to
pandemics. If you cancel because you are worried about swine flu, it's
unlikely that you will be covered for any financial losses.
It's worth noting that the UK is regarded as a high risk zone for swine flu
and some countries have now introduced thermal scanning at airports. This
could mean that people travelling with a fever or other flu like symptoms
will find themselves being refused, or quarantined on arrival. Some airlines
are now banning people with swine flu symptoms from travelling.
Most European countries have health facilities that are up to date with
swine flu management and Tamiflu may/should be available - if required. But
you do need to consider what would happen if you intending to travel to a
country with sub standard health facilities. Your GP may be willing to
prescribe Tamiflu on a 'just in case' basis if you want to take some with
you. And if you already have any lung problems, it's worth asking your GP
if he will prescribe a broad spectrum antibiotic such as amoxycillin for use
abroad in case you develop a chest infection.
FEEDBACK FROM PEOPLE WITH ME/CFS WHO HAVE HAD SWINE FLU
Feedback so far is from four people with ME/CFS who have had swine flu. All
four have had several swine flu symptoms and three have been quite poorly
but without any serious complications. One has had a relatively mild
illness. They are all recovering slowly. Two have taken Tamiflu with
nausea being reported by both as a side effect.
PREPARING FOR SWINE FLU
The Dept of Health recommends that everyone should have a network of 'flu
friends' in place who could help out if you fall ill. This is obviously
going to be far more important if you live alone or are housebound.
YOUR FEEDBACK ON SWINE FLU
Please continue to let us know via ME Connect (
meconnect@meassocia tion.org. uk This email address is being protected from
anything to our attention about swine flu or have a query/comment that can
be added to the next MEA website update. In particular, we want to hear
from people who have had swine flu and/or taken Tamiflu.
We hope you find this information helpful and practical.
Dr Charles Shepherd
Hon Medical Adviser, The ME Association
27 July 2009
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