Action for M.E.

NHS healthcare for people with M.E.

The family doctor or General Practitioner (GP) is usually the first point of 
contact for health advice or treatment.  GPs work as part of a team, known as a 
primary healthcare team, which may also include practice nurses, community 
nurses, health visitors, pharmacists and other healthcare professionals.

Sometimes it may be necessary for your GP to refer you to a specialist.  A visit 
to a specialist is known as 'secondary' care and can only be arranged through 
your GP.

This information sheet is for people with M.E. (also known as Chronic Fatigue 
Syndrome or CFS). It explains what help is available from primary and secondary 
care and how to make the most of this.  For information on healthcare for 
children see Further Information at the end.

It is worth noting that the medical profession generally use the term Chronic
Fatigue Syndrome (CFS).  Even if you prefer the term M.E. it may be useful for 
you to use Chronic Fatigue Syndrome when visiting your doctor. 

What can I expect from my primary healthcare team?
Ideally your primary healthcare team should be able to manage your illness in 
the same way that they would other chronic health problems, such as diabetes or 
asthma. However some GPs are more confident and experienced with the diagnosis 
and management of this complex illness than others. 

A GP who has the experience of other patients with M.E./CFS may be able to 
provide an appropriate management programme together with other members of the
healthcare team. This might include treatments and strategies to help control 
symptoms and improve your quality of life. Complementary therapies such as 
acupuncture may be helpful in managing problems like pain and are sometimes 
available on the NHS.

If you suspect you may have M.E./CFS or you have already been given a 
provisional diagnosis and are looking for confirmation of this, your GP should 
be able to reach a firm diagnosis but it may take several appointments to 
achieve. Sometimes a referral to a specialist may be necessary.

If you have had a diagnosis of M.E./CFS for some time it is still important to 
visit your GP. This will help to ensure that your condition is monitored and 
that any medication you are taking is reviewed on a regular basis. If you 
experience significant setbacks or relapses, or need help or assistance with 
benefit and insurance claims, it is helpful if you and your GP have an 
established relationship.



If your GP has limited experience in the management of M.E./CFS, there is a 
helpful publication available for GPs, produced by Action for M.E. and endorsed 
by the Department of Health: Guidance on the management of CFS/M.E.
Alternatively there may be another GP within the same practice who is more 
experienced or interested in the management of M.E./CFS, so do ask. 

How can I make the most of appointments with my GP?
Because time will be limited, it is helpful to clarify the purpose of your visit 
and what you want to achieve at the beginning of the appointment.

When you visit your doctor you can choose to take a friend or relative with you. 
There can often be a lot of information to remember, so it can be helpful to 
have someone with you to listen to what is being said and to make notes. 
Sometimes it is possible to book a double appointment if you have a number of 
things you want to discuss.  

It can help to write down questions you want to ask your doctor. Be sure to tell 
your GP about all the symptoms you are experiencing, even if they seem 
unrelated.  They may be able to see a link which is not obvious to you.  
If you develop any new health problems it is important that you discuss these with your 
GP so that they can assess whether the symptoms are part of your M.E./CFS or are 
caused by something different. 

You could try keeping a simple diary of your symptoms and problems to help you 
and your GP see a pattern and assess how your condition may be fluctuating. This 
can also be a helpful prompt if you see another healthcare professional or if 
you are filling out forms for benefit claims.  

Make sure you understand everything your GP has told you before you leave the 
surgery.  Don't be afraid to ask them to explain anything you're not sure about.  
It is important that you understand how to manage your care.

Advice by telephone
GPs are often happy to give advice on the telephone as it can save time for both 
you and them.  Check with your surgery to find out if this is possible and if 
they have set times when they prefer patients to telephone.  This could be 
convenient if you need specific advice but don't feel well enough to visit the 
surgery.  If your GP is unavailable, you may be able to leave a message asking 
for them to call you back when they are able to. 

Seeing a different GP
There is often more than one GP in a practice and you can ask to see any of the 
GPs in the practice where you are registered.  However, it is a good idea to try 
and see the same GP each time so that you can build a relationship with them.  

Second opinion
You can ask to have a second opinion, but you are not automatically entitled to 
this.

Home visits
Your GP will decide if, and when, a home visit is required on the basis of your 
medical condition.  This can be particularly important if you are severely 
affected with M.E.  If you are unable to get to the surgery because you feel too
 ill to leave your home, it may be helpful to discuss this with your GP on the 
telephone or get a friend to do this for you.  It may be possible for the 
district nurse to visit you, or for a friend or relative to go to the surgery on 
your behalf to discuss your condition.  In this situation you would need to 
write a letter to your GP giving them permission to discuss your case.

Managing at home
Local social services departments are responsible for providing home care 
services (formerly called home help) for people who need help at home with 
personal care, for example washing and dressing.  There is normally a charge 
(which is means tested) for these services and the amount of help on offer 
varies across the UK.  You can find the details of your local social services in
the phone book, from Directory Enquiries, or you can ask at your local library 
or Citizens Advice Bureau.

Aids for people with disabilities are available from your doctor; other health 
care professionals involved in your care; local authority social services 
departments and a number of voluntary organisations, including the British Red 
Cross. If your problems are severe it may be appropriate for you to be assessed 
by a community occupational therapist in order to receive modifications to your 
home such as ramps and stairlifts.

If you are experiencing significant problems with your diet and struggling to 
maintain an adequate food intake, discuss the possibility of a referral to a 
dietician with your GP or hospital specialist.

Prescription costs
Most people have to pay for their prescriptions although there are some 
exemptions.  Leaflet HC11, available from your main post office, will tell you 
whether you need to pay.  If you need medication on a regular basis you can 
reduce costs with a pre-payment certificate.  You can find out more about this 
in Leaflet HC12 which is also available from main post offices, or visit 
www.doh.gov.uk/nhscharges.

Complaints
If you have concerns, speak to someone directly involved in your care (GP, 
nurse, practice manager, receptionist), as they may be able to sort out the 
problem quite easily.  If this doesn't resolve the matter, each GP surgery has a 
complaints procedure and you can speak or write to the person who deals with 
complaints. 

Sometimes you might want to talk to someone who is not directly involved in your 
care.  The new Patient Advice and Liaison Services (PALS) that is available in all 
NHS and Primary Care Trusts should be able to help you.  Alternatively, you can 
phone NHS Direct on 0845 4647 for advice on how to make your complaint or visit 
www.nhsdirect.nhs.uk.

Will I need specialist care?
If your GP has any doubt about your diagnosis or the management of your illness, 
a referral to a specialist in secondary care may be appropriate.  You may also 
be referred to a specialist if you have severe or long-standing symptoms, or if 
your case is particularly complex.  Discuss with your GP whether referral to a 
specialist would be helpful.  

Specialists are usually based in hospital outpatient departments. They may be a 
specialist in other medical conditions but have an interest in M.E./CFS.  Your 
referral may not be to your nearest hospital and it is also very likely that 
there will be a waiting list.  


How can I prepare for my visit to a specialist?
To reduce stress and minimise the delayed fatigue that can so often be 
experienced with M.E. try to allow plenty of time for the journey to your 
hospital appointment. It is also important to allow yourself time to rest 
afterwards.  

It is often helpful to be accompanied, for some or all of the appointment, by a 
carer or friend. They can help provide additional information or perspective 
during the consultation if needed. They can also make notes of any key points 
discussed during the appointment. 

Your GP should send any relevant test results and other related information with 
your referral letter. You might find it helpful to prepare for the appointment 
by writing a simple summary of what has happened to you medically. This can be 
particularly helpful if your story is complicated and will be a useful prompt 
for you. A list of your main symptoms and how they affect you; an outline of 
your current level of activity and of your main concerns can help to focus 
discussion and make best use of the available time. 

It is important to have a record of any other health professionals you have seen 
or are seeing.  Also a list of the medication you are taking currently and in 
the past, the dose and whether you have felt any benefit or experienced side 
effects. It is also a good idea to ensure that the specialist is aware of any 
complementary therapies you are using or have tried.

What can I expect at the appointment?
The specialist will want to make a full assessment of your situation, leading to 
a diagnosis. They should also outline an overall plan of management and how it 
will be achieved, and provide a rough idea of what the initial timescale and 
goals will be. This will be given as advice to you in person and in a letter to 
your GP. The plan may include advice on managing physical and mental activity, 
lifestyle changes and adjustment and coping. The details will depend on 
individual circumstances.  

The specialist may discuss treatments. This may be medication or the use of 
other approaches that can help alleviate symptoms such as pain, sleep 
disturbance, mood disturbance, gut symptoms, dizziness, etc. If medication is 
suggested, this may be prescribed at the appointment or recommended to your 
GP for you to try later.

They may discuss the necessity of a referral to another specialist or 
professional for some specific aspect of your symptoms or condition. This could 
involve professionals such as physiotherapists, occupational therapists, 
dieticians, social workers, counsellors or clinical psychologists. Depending on 
the nature of the problem and the best options for treatment, any further 
referrals might not be conducted at the same hospital and there may be a waiting 
period for the first visit.  If you do see another professional they will assess 
you and then plan further visits if necessary. They will also keep your GP and 
specialist updated.

Issues about benefits, employment and/or education may need to be addressed. The 
specialist may be able to write letters in support, if appropriate.

What can I expect after my appointment with a specialist?
The specialist will decide with you and your GP the most appropriate medical 
supervision and follow-up arrangements. Your GP will be the main person for 
supervising your ongoing care, and will normally be the first point of contact 
for any problems that arise. 

Please remember that if you decide to see a specialist privately it is important 
that they keep your GP and any NHS specialist informed so that your treatment is 
managed effectively.  Action for M.E. has a free Code of conduct for private 
practitioners and complementary therapists which highlights issues you need to 
be aware of before starting any private treatment. 

Where can I find further information?
Action for M.E. produces a range of information sheets and booklets on M.E. 
including A guide to symptoms, causes and treatments. Contact Action for M.E. on 
01749 670799 for further details, or for information on the benefits of becoming 
a member of the charity.   

We can also provide your GP with Action for M.E.'s Guidance on the management of 
CFS/M.E. and more detailed information about M.E. services.  Your GP can email 
admin@afme.org.uk to request a copy of the guide.  

Important differences exist between children and adults in the nature and impact 
of the M.E. and its management.  However, the principles of care of children and 
young people with M.E. are common to many chronic conditions.  For further 
information see Action for M.E.'s Children and Young People's Guide to The Chief 
Medical Officer's Working Group Report on CFS/M.E. and our guide for GPs.
 
The Action for M.E. Support Line offers people with M.E. and their carers 
support, advice and information.  The telephone support workers are trained 
volunteers who understand the illness or have personal experience of M.E./CFS.  
You can call the Support Line between 11am and 1pm Monday to Friday on 0117 
9046641.  Calls are charged at normal rates.

Support Groups can be a valuable source of informal local information, advice 
and help.  Contact Action for M.E. on 01749 670799 for details of your nearest group.





NHS healthcare for people with M.E.			2
Copyright Action for M.E. March 2003 Registered charity number 1036419