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Talking to your GP about M.E.

Talking to your GP about M.E.

In order to diagnose you as having M.E. – or send you to a specialist for a diagnosis – your GP will need to know what symptoms you've been experiencing. It can be hard to remember everything when you're put on the spot, especially given that there are a range of symptoms associated with M.E., including difficulties with memory.

By doing a little bit of preparation for your appointment with your GP, you can help yourself – and your doctor – feel more confident and comfortable.

  • Arrange appointments for your best time of day and rest beforehand so you feel as ready as possible. If you have a number of things you want to talk about, you could ask about booking a double appointment.
  • Write a short list of the things you want to say on a postcard before you go, so you don't have to keep it all in your head. Some people like to prepare for their GP visit by recording their symptoms as they experience them in the days leading up to the appointment. It can be useful to use a rating scale that doctors use to assess the diagnosis and severity of M.E. Our Medical Advisor, Dr Gregor Purdie, uses one published in the 2010 Scottish Good Practice Statement on ME-CFS; the rating scale used in the 2003 Canadian Consensus Criteria is also well-recognised.
  • Our booklet Newly diagnosed with M.E. has a list of key questions to ask your GP about M.E.
  • You can choose to take a parent, carer, other relative or friend into the appointment 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.

At the beginning of your appointment, it might be helpful to be clear about why you are there, and what you want to get out of the visit. It helps everyone if you are specific about the problems, then prioritise them, for example: "Of all these things the one that concerns me most is…" or "I think I would cope better if my sleep pattern improved."

It's really important to be yourself - don't perk up or put on a special effort if that's not how you usually are. Your doctor needs to see how you are really feeling. Some doctors might ask a lot of questions, because they are trying to build an accurate picture for themselves as quickly as possible. By answering them as fully as you can, he or she will get the best picture of how your symptoms affect you.

You can use our template letter to signpost your GP to Dr Nina Muirhead's CPD-accredited free online learning module on the diagnosis and management of M.E. It's based on clinical case studies, and reflects emerging biomedical evidence alongside patients' perspective. It's complemented by our Learn about M.E. podcast, with input from patients Anna and Craig, about the positive difference that good care and support has made for them, alongside insight from Dr Muirhead and GP Claire Wood.

Trusting your doctor

It's important for you to feel that you can trust people who have a significant role in your life.

If there is poor communication, or you doubt the doctor understands your condition, this can be confusing - your brain tells you that the professional knows better than you, but your gut feeling tells you otherwise.

If you feel let down by your doctor, this can make you begin to doubt yourself and stop trusting in your own instincts. This may affect the way you behave – you might become aggressive, withdrawn, angry or reckless – but this won't help you receive better care. Making your feelings clear can help you take control of the situation. You may still end up disappointed with your doctor, but making a plan and carrying it through is good for your self-esteem and will improve your psychological health.

Getting your point across

It can help to use names as a reminder that there are real people involved. Say "Doctor Smith" not "Doctor" and "Debra" not "my daughter" (if you are a parent/carer). Ask for the names of any specialists to whom your doctor refers you.

If a carer is talking on your behalf it's more effective for them to focus on their own needs, rather than speaking for you. For example, say: "I'm worried about Debra and would feel reassured if she saw a specialist," not "Debra needs to see a specialist" or "You need to refer her to a specialist." Few people respond well to being told what to do, but no-one can argue with your needs as you express them.

Don't be afraid to disagree with your doctor, or say you don't understand. Calmly explain why you disagree or ask questions to help you understand better. You can ask them to repeat or explain things to you more simply. Make sure you understand everything your doctor has told you before you leave the surgery. If you would like to try a symptom management approach you've heard about, ask your doctor what they think of it and listen to what they say before making a decision.

You have the right to turn down any treatment or symptom management approach if you think it is unsuitable for you. However, it is best to listen to your doctor's reasons for suggesting the treatment before you refuse. Conversely, don't just accept everything that is offered without taking time to think it through or researching the treatment. You might find it useful to say to your doctor: "I will think about that over the next week/month and tell you what I think next time."

If you are meeting unreasonable resistance, the "broken record" technique might be helpful. This involves repeating your key message while acknowledging any arguments your doctor raises:

  • You: "I'd feel reassured if I saw a specialist."
  • Doc: "A specialist still cannot cure M.E."
  • You: "I realise that but I'd still feel reassured if I saw a specialist."
  • Doc: "I doubt the specialist would find anything different to what I have found."
  • You: "I understand that but I'd still feel reassured if I saw a specialist."
  • When you have responded in this way three times and are still meeting resistance, you can change tack and ask: "What are you suggesting as an alternative if I do not see a specialist?"

Action for M.E. has information for professionals that you could share with your GP and other doctor - the most effective way to do this is to say: "There is an organisation that supports children and adults with M.E. that has useful, evidence-based information. To save you the trouble, I can leave the contact details for Action for M.E. with your receptionist."

If you're unhappy about something

Don't bottle it up. Calmly work out why you are unhappy (be specific) and write down the reasons (be concise). It is unreasonable to expect your doctor to guess that you are unhappy, so if you want your doctor to know you are upset, make an appointment to discuss it or contact them by phone or letter. Try to be diplomatic: you will only make the situation worse if you make your doctor feel like they are being criticised or attacked.

If it's not important in the long term and you don't want to talk to them about it, try to put it down to experience and move on. It can help to talk to someone else close to you who understands your illness, so that you can share your feelings. Try to have a laugh about it so that it doesn't build up into a bigger problem.

If you or your carer are thinking about making a complaint, someone from the independent NHS Complaints Advocacy service may be able to help.

Changing your doctor

You have the right to change doctor if yours isn't supportive, but bear in mind that doctors have the right to refuse to take you on as a patient. Don't search for the impossible – no doctor has a cure for M.E.

If you would like to look for a new doctor, your local M.E. support group might be a useful source of information and experience. And remember, changing doctors doesn't necessarily mean changing practices - doctors within the same practice often have different opinions and attitudes .Your own GP may suggest a colleague he/she knows who has an interest in M.E.

It might be possible to arrange preliminary appointments with a prospective doctor so that you can ‘check them out' first. It might be helpful to write a brief history of your illness and symptoms for your new doctor so you don't have so much to go through at the initial consultation.

Give your new doctor a chance – it takes time to build a relationship. Don't be put off if the doctor doesn't know about M.E. – it doesn't mean they are a bad doctor. If they are friendly, supportive and open-minded, they will learn as they go along. And if you are unfortunate enough to have had a bad experience with one doctor, remember that every doctor is different.