Some of this information was taken from Dr Charles Shepherd’s guide on How to deal with your doctor. Dr Charles Shepherd is the medical advisor to the ME Association.
The guidelines for how health professionals should diagnose and treat ME are changing. Draft guidelines are available on the NICE website and are due to be published in April 2021. The key points are that graded exercise therapy (GET) will no longer be recommended as a suitable treatment for ME, and that cognitive behavioural therapy (CBT) should not be presented to patients as a cure for ME.
Finding the right GP
If you’re not happy with the support you’re getting from your GP, you could ask the practice manager or senior partner whether any of the GPs at your surgery have a special interest in ME or fibromyalgia. If you can’t find a suitable GP at your surgery, you could move to a different surgery. You can find out about what GP services are available through your local healthwatch. However, it can be difficult to find GPs who have an interest in, or understanding of, ME or fibromyalgia. You could ask a question on our Facebook group to see what experiences others have had of local GPs.
Having a conversation with your GP
If you think you need more time than the 10 minute appointment to discuss your symptoms with your GP, you can ask for a double or extended appointment. Longer appointments might not be available on busy days or at short notice. It can help to make a list of the symptoms you need to discuss in your appointment. This can be especially useful if you struggle with brain fog. You should think about what your main symptom is- which symptom causes you the most difficulty. You should also think about what you expect from the appointment, for example a change to your medication or advice about managing symptoms. If your GP doesn’t have a good understanding of ME, but is receptive to learning, you could point them to the 1 hour CPD accredited course by Dr Nina Muirhead, which gives an overview of the condition.
The medication which your GP is able to prescribe will usually be limited to treating symptoms like pain, sleep disturbance, irritable bowels or depression. You should tell your GP about any over the counter medication or supplements you take, as these might have interactions with prescribed medication.
Specialist clinics for ME
If your GP is not able to help you manage your symptoms, they can refer you to a specialist ME clinic. For South Yorkshire, this service is provided at the Michael Carlisle Centre in Nether Edge, south Sheffield. The service is open to adults and children with a provisional diagnosis of ME, who want help to manage their symptoms. The initial care package includes an assessment, education about self-management strategies and a review to look at options for further therapy. What therapy is provided depends on the severity of your symptoms and your preferred choice of therapy.
If you are not satisfied with the support you have received from your GP, and you can afford it, private healthcare is an option. You should be aware that, although a private doctor might have more time to spend with you, or more empathy, this doesn’t necessarily mean that they will have a better understanding of your health condition. There is currently no known cure for ME or fibromyalgia. Initial consultations cost at least £200, which doesn’t include the costs of any further investigations.
Under the Equality Act 2010, disabled people have the right to reasonable adjustments to allow them to access services. There is no list of what health conditions or disabilities are counted under the Equality Act, however, if your condition has a substantial and long term effect on your ability to carry out daily activities, it will be counted. Examples of reasonable adjustments could be longer appointments or for information to be communicated to you through a carer. You can ask your GP to add information about what reasonable adjustments would help you to your Summary Care Record.
Making a complaint
Patient Advice and Liaison Services (PALS) can help you understand the complaints process. They can be particularly useful to help you deal with urgent issues such as treatment you are currently receiving. You can also get help to make a complaint through the NHS complaints advocacy service.