The ME Association continues to receive a wide variety of questions about swine flu (influenza A virus type H1N1) and how the pandemic might affect people with ME/CFS.
 
The numbers affected in the UK have been rising quite rapidly once again in October - especially in children under 14, which may be related to the return to school and college.  The current official weekly figure is around 53,000 cases last week with 99 people being admitted to hospital intensive care.  The true total figure is almost certainly much higher as many people are only having a very mild illness and not reporting it.
 
However, some serious cases are occurring – mainly in people with pre-existing medical conditions and women who are pregnant. A small number of fatalities have been reported in the UK, currently 99 in England – almost all in people with pre-existing medical conditions, and in small children.
 
The most common age group to be affected is children under the age of 14.  Figures are still much lower in the over 65s - suggesting a degree of resistance here.
 
There are no signs to indicate that the virus is changing, becoming more severe, or developing any resistance to antiviral medication (ie Tamiflu).
 
The situation regarding management is constantly changing – so this is our current advice and information on the most common questions we are receiving.
 
We will continue to update 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 ADOLESCENT 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 swine flu vaccine and the antiviral medication (ie Tamiflu) needs 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.
 
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 from 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 (asthma in particular) and that any chest infection is promptly treated.  And stop smoking if you do!
 
If you are working your employer should be taking sensible precautions to cut down the risk of transmission – ie advising sick employees to stay at home and providing antiseptic wipes to clean hard surfaces such as keypads which have multiple users.
 
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 unproven 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 appears to 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 SWINE FLU?
 
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.  Feedback so far (section 17) confirms both of these assumptions.
 
7  DOES IT MAKE ANY DIFFERENCE IF YOU HAVE ANY OTHER MEDICAL CONDITIONS?
 
Yes, it can make a very 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 complications include:

•  diabetes
• chronic liver and kidney disease
• chronic neurological disease, especially those that affect respiratory function.  NB  The Department of Health accepts the WHO classification of ME and CFS as being neurological.
• chronic heart disease
• immune system deficiency/suppression caused by cancer, leukaemia and drugs such as steroids
• 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

• a sudden onset of fever – 38 degrees centigrade or over (but not always present)
• fatigue
• cough (can be dry) or shortness of breath
• headache
• sore throat
• sneezing and/or runny nose
• aching muscles
• loss of appetite
• diarrhoea and sickness (occasionally)

Where mild, the illness tends to last for about a week.
 
You can do a very helpful symptom check on www.nhs.uk
 
9  HOW CAN YOU TELL THE DIFFERENCE BETWEEN ME/CFS FLU-LIKE SYMPTOMS AND SWINE FLU?
 
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.  Most people with ME/CFS who have had swine flu also report a 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 and tree 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::

11  WHAT SHOULD I DO IF I HAVE NEW FLU-LIKE SYMPTOMS THAT DO NOT SEEM LIKE ME/CFS?
 
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.
 
11b  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  or 0800 1 513 513 for general information
 
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 over the phone you should speak to your GP.
 
NPFS website

•  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 swine flu 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 the swine flu helpline on 0800 0514 142 (in Northern Ireland)

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

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 to the foetus remains uncertain).  Tamiflu 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 ('hives')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 a significant exacerbation of ME/CFS.
 
As noted in point 12, one of the rare side-effects is neuropsychiatric disorders – so this drug does need to be used with extra caution in anyone, especially children, who have a past or current history of significant mental health problems.
 
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  SHOULD PEOPLE WITH ME/CFS BE VACCINATED AGAINST SWINE FLU?
 
Now that the genetic make-up of the swine flu virus has been identified, scientists have been able to rapidly develop a vaccine that is based on a killed virus.  In simple terms it is comparable to the normal seasonal flu virus vaccine but only gives protection against the swine flu virus.  It does not offer any protection against common seasonal flu viruses.
 
There are two brands of swine flu vaccine now being used – Pandemrix and Celvapan.
 
Pandemrix only requires one dose.  This vaccine is prepared in hen's eggs so should not be given to people who are allergic to egg products.
 
Celvapan requires two doses.  This vaccine is not prepared using eggs – so it can be used in people with egg allergy.
 
The vaccine is first being offered to people who are more likely to become seriously ill if they develop swine flu – see the bullet point list in section 7.  In addition, it is being offered to health service staff and people who live in the same house as someone whose immune system is compromised by disease or treatment.  For the purpose of ME/CFS it can be argued, if necessary, that people with ME/CFS are in a high priority category as they have a chronic neurological disorder as classified by the World Health Organisation and accepted by the Department of Health.  However, GPs may not accept this reasoning on the grounds that people with ME/CFS are not at special risk from swine flu.
 
People who are not in one of the high priority groups will be offered the vaccine at a later stage - possibly during November.
 
All vaccines can produce side-effects.  Minor ones such as redness, soreness, fever and headache are quite common.  More serious ones do occur but they are rare.  Concern has been expressed about whether the clinical testing of swine flu vaccine prior to widespread use has been adequate.  The Department of Health is confident that the vaccine pre-use safety checks are adequate and that the vaccine is safe – but some health professionals are not yet convinced and will not be using it themselves.  Concern has also been raised about the risk of Guillain Barre syndrome – a rare and serious neurological reaction that was occasionally reported in the 1970's in America following a decision to rush out a swine flu vaccine (which is not the same as the one now being offered).
 
When it comes to swine flu vaccination and ME/CFS there isn't a simple yes/no answer. We know from a large number of anecdotal reports that vaccines, including ordinary flu vaccine, can sometimes trigger ME/CFS or cause an exacerbation or relapse of ME/CFS symptoms.  At the same time swine flu is likely to cause a significant relapse of ME/CFS symptoms.
 
Anyone with ME/CFS who also has one of the high risk medical conditions listed in section 7 should certainly discuss having the vaccination with their GP.  So should health workers who are likely to come in contact with swine flu patients.  For those who do not fall into these categories this is very much an individual decision - but as with any other vaccine it would be sensible to defer vaccination if you have an infection or a lot of flu-like ME/CFS symptoms.  Having an adverse reaction to flu vaccine in the past would also need to be taken into consideration.Feedback!  Please let us know if you have had the swine flu vaccine, which brand of vaccine was used if possible, and what happened afterwards - even if there were no side effects at all.  Regularly updated summaries of feedback from people with ME/CFS who have had swine flu vaccination - over 50 responses so far - can be found in the news section of the MEA website 28 (28 January update). Please use this This e-mail address is being protected from spambots. You need JavaScript enabled to view it  
 
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/travelor 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 that 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.  If you already have any lung problems, it's worth asking your GP if he/she will prescribe a broad spectrum antibiotic such as amoxicillin for use abroad in case you develop a chest infection.
 
17 FEEDBACK FROM PEOPLE WITH ME/CFS ON SWINE FLU AND TAMIFLU

We now have feedback from nearly 40 people with ME/CFS who have had swine flu.  All have had several swine flu symptoms and several report being quite poorly.  None have had any serious respiratory complications.  A minority have had a relatively mild week long illness with very little effect on their ME/CFS.  They all appear to be recovering slowly.  Overall, this feedback clearly indicates that swine flu is not a straightforward five-day illness if you have ME/CFS, and it is causing a significant degree of relapse in most.  

18 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.
 
19 YOUR FEEDBACK ON SWINE FLU
 
Please continue to let us know via This e-mail address is being protected from spambots. You need JavaScript enabled to view it if you want to draw 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 vaccine and taken Tamiflu.
 
We hope you find this information helpful and practical.
 
Dr Charles Shepherd
Hon Medical Adviser, MEA
 
Version 5: 23 October 2009